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Relationships between Temperament Type and Perceived Self-Efficacy among Informal Caregivers

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 Title Page
 Dedication
 Acknowledgement
 Table of Contents
 List of Tables
 List of Figures
 Abstract
 Introduction
 Review of the literature
 Methods
 Results
 Summary, conclusions, and...
 Appendices
 References
 Biographical sketch
 

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1 RELATIONSHIPS BETWEEN TEMPER AMENT TYPE AND PERCEIVED SELF-EFFICACY AMONG INFORMAL CAREGIVERS By TERESA A. TOZZO LYLES A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLOR IDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY UNIVERSITY OF FLORIDA 2006

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2 Copyright 2006 by Teresa A. Tozzo Lyles

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3 This document is dedicated to my parents, Carmen and Donald Tozzo; my children, Leslie, Brianna, and Morgann Lyles; and the Tozzo, Julian, and Clark Families

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4 ACKNOWLEDGMENTS Wisdom is a gift of God, is the basis of a verse in the Ol d Testaments Book of Wisdom. During the past five years, this quote has always proven true. Without my faith, and of course, the prayers and support of family and friends, I would not have been able to complete this miraculous endeavor. First, I want to thank my Lord for His gui dance and ultimate mercy, His wisdom is great and His forgiveness is never ending. My committee has been the backbone and driv ing force behind the success and completion of this study. Without th em, I would not have been able to put one foot in front of the other. Dr. R. Morgan Pigg, Jr., my chair, has the pati ence of a saint and for that I thank him wholeheartedly. He has encouraged me to conti nue on in the most caring and wise way. I thank Drs. Kim Walsh-Childers and Christine Stopka, wh om I have known for more than a decade, for the spiritual guidance, the elec tric energy, the brainstorming on horseback, the experiences with Sidney Lanier and Adapted Aquatics, and most importantly, the hugs. I thank Drs. Jiunn-Jye Sheu and Virginia Dodd, for sticking with me an d not letting me lose my footing when I was slipping. I also appreciate that everyone overlooked my often quirky behavior. My parents, Carmen and Donald Tozzo, brought me to this earth to experience all my gifts and graces. Although I had to lose my wonderful father in 1999, he is the reason that I became interested in social support and caregiving in th e first place. From his perch in Heaven, he has watched diligently over our family. He has gui ded me when I had no clue, and taught me to do what makes me happy. My mother, who is my prim ary spiritual guide, has been my rock and my light. I thank mommy and daddy for their love, gift s, and prayers. I also want to thank two wonderful and special people who have been in my life since birth, my aunt and uncle, Blanca

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5 and Frank Tozzo. They have always given me everything that two parents can, and for this, I love and cherish them dearly. I want to tell my three beau tiful, dear and wonderful da ughters, Leslie, Brianna, and Morgann, that they will always be a piece of my own heart and soul. My children helped me to get up and start every day, even when I did not have the energy or the will. I want to thank them for their many smiles and tears. I want to tha nk my other family members, especially the two most awesome and beautiful sisters anyone can possibly have, and who were supportive beyond belief, Carmen and Elena I thank them for always being on my side, regardless if our opinions differed. I also want to exte nd my special thanks to my niece and nephews Adam, Matt, Miranda, and Danny Clark, and Mark and John Julian. This paper is also dedicated to all my riding gi rlfriends who kept me a ddicted to riding and endurance. I thank them for the drumming, the ri de camp parties at the party tent and also because they never let up on me for one minute, especially Kathy, Colette, Elaine, Brenda, Roxanne and many others I have met on the trai ls. My moments of sanity would not have transpired if it were not for my special best fri end, my horse J. Darby, who has carried me for many miles of joy and provides positiv e energy despite his odd behavior. My two childhood friends, Mayte Rodriguez Regan and Felicia Garcia, helped me weather the storm by just listening and he lped me through many tearful days. I want to send heart-felt thanks to two incr edibly spiritual indivi duals who provided many prayers, guidance, lunches, spiritual talks, and support Drs. Mary Hughes and Dr. Jane Emmeree. I want to thank some incredibly w onderful individuals who allowed me to interview them, before I began to write, about their insight s, feelings, thoughts, feedback and reflections on caregiving that came from their heart and soul. Without them, I would not have been able to

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6 focus and guide my thoughts in the direction that became the final product for this dissertation Evelyn Cairns, Kathy Mladinich, Diane Gatsch e, Keith Meneskie, and Dale Rimkunas. I want to thank my incredibly large and suppor tive family at Invivo Corporation who have been incredibly kind during the past five year s, especially Dr. Randy Duensing, who was patient, worked around my crazy school sche dule, and helped me get to the end. I also want to thank my work family from the Department of Radiology at Shands, especially Drs. Kate Scott and Jeff Fitzsimmons who always supported and enc ouraged me in my academic endeavors. I want to thank two wonderful people, John a nd Susie Bauer, who showed me what true caring and caregiving is all abou t. Susie was always with me through these final and difficult steps, and even though she left this Earth for a mo re ethereal place, her presence from above kept me centered. Finally, I want to thank the University of Florida and the Gator Nation for the honor of graduating from this phenomenal academic institution.

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7 TABLE OF CONTENTS page ACKNOWLEDGMENTS...............................................................................................................4 LIST OF TABLES................................................................................................................. ........10 LIST OF FIGURES................................................................................................................ .......11 ABSTRACT....................................................................................................................... ............12 CHAPTER 1 INTRODUCTION................................................................................................................. .14 Research Problem............................................................................................................... ....15 Rationale...................................................................................................................... ...........16 Research Questions............................................................................................................. ....17 Delimitations.................................................................................................................. .........17 Limitations.................................................................................................................... ..........18 Assumptions.................................................................................................................... .......18 Definition of Terms............................................................................................................ ....19 Summary........................................................................................................................ .........20 2 REVIEW OF THE LITERATURE........................................................................................22 Informal Caregivers and Fact ors Affecting Their Roles........................................................22 Informal Caregiving........................................................................................................22 Changes in the Caregiver Role........................................................................................23 Medical Costs of Caregiving...........................................................................................26 Health Risks of Caregiving.............................................................................................29 Relationship between caregiver h ealth and level of caregiving...............................31 Care receivers with cancer/terminal illness..............................................................34 Care receivers with mental illness............................................................................36 Care receivers with dementia...................................................................................37 Degree of Support and Caregiver Distress......................................................................39 Caregiving and health risks......................................................................................39 Caregivers and family support.................................................................................41 Cultural and Ethnic Factors in Caregiving......................................................................42 Temperament Type............................................................................................................... ..50 Self-Efficacy and Outcome Expectancies..............................................................................57 Self-Efficacy and Effect on Health and Disease.............................................................57 Self-Efficacy Among Health Professionals.....................................................................59 Self-Efficacy and Caregivers...........................................................................................60 Summary........................................................................................................................ .........63

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8 3 METHODS...................................................................................................................... .......65 Research Design................................................................................................................ .....65 Research Variables............................................................................................................. ....66 Instruments.................................................................................................................... .........67 Caregiving Self-Efficacy Scale.......................................................................................68 Keirsey Temperament Indicator II..................................................................................69 Caregiver Profile Information.........................................................................................71 Pilot Study.................................................................................................................... ..........71 Preliminary Review.........................................................................................................71 Procedures..................................................................................................................... ..72 Informed Consent............................................................................................................74 Findings....................................................................................................................... ....75 Final Study.................................................................................................................... ..........77 Instrumentation................................................................................................................ 77 Procedures..................................................................................................................... ..78 Data Analysis.................................................................................................................. .81 Univariate Procedures.....................................................................................................82 Bivariate Analyses...........................................................................................................82 Multivariate Analyses......................................................................................................83 Instrument Reliability......................................................................................................84 Summary........................................................................................................................ .........85 4 RESULTS...................................................................................................................... .........90 Participant Characteristics.................................................................................................... ..90 Caregiver Group Type, Gender, and Race......................................................................91 Temperament Type, Age, Overall Health, and Duration of Care...................................91 Temperament and Self-Efficacy.............................................................................................93 Research Questions............................................................................................................. ....94 Research Question One...................................................................................................94 Research Question Two...................................................................................................95 Research Question Three.................................................................................................96 Research Question Four..................................................................................................97 Research Question Five...................................................................................................98 Research Question Six.....................................................................................................98 Summary........................................................................................................................ .......100 5 SUMMARY, CONCLUSIONS AND RECOMMENDATIONS.......................................107 Summary........................................................................................................................ .......108 Conclusions.................................................................................................................... .......111 Recommendations................................................................................................................ .117 APPENDIX A LETTER OF INVITATION TO ORGANIZATIONS.........................................................120

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9 B SOLICITATION POSTER FOR VO LUNTEERS IN PILOT STUDY...............................121 C ORGANIZATIONAL CONT ACTS AND PROFILES.......................................................122 D CAREGIVER SELF-EFFICACY SCALE...........................................................................124 E KEIRSEY TEMPERAMENT INDICATOR II....................................................................126 F CAREGIVER PROFILE INFORMATION (DEMOGRAPHICS)......................................128 G SCRIPT FOR RECRUITING VOLUNTEER CAREGIVERS............................................130 H PANEL OF CAREGIVERS TO REVIEW PROTOCOL....................................................131 I UNIVERSITY OF FLORIDA INST ITUTIONAL REVIEW BOARD...............................134 LIST OF REFERENCES............................................................................................................. 139 BIOGRAPHICAL SKETCH.......................................................................................................151

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10 LIST OF TABLES Table page 2-1 Incremental caregiving hours and incrementa l cost of informal care attributable to dementia....................................................................................................................... ......64 2-2 Adjusted weekly hours and yearly costs of informal caregiving.......................................64 3-1 Instrument specification table............................................................................................8 6 3-2 Keirsey Temparament Indicator II Item to total correlation...........................................87 3-3 Caregiving Self-Efficacy Scale Item to total correlation................................................88 3-3 Caregiving Self-Efficacy Scale Item to total correlation................................................89 4-1 Distribution of participants by group type, gender, and race...........................................102 4-2 Distribution by temperament type, age, overall health, and duration of care..................103 4-3 Distribution of Gender by Temperament Type................................................................104 4-4 Distribution of Particip ants by Temperament Type.........................................................104 4-5 ANOVA Table Association between total score for Caregiving Self-Efficacy Scale and Keirsey Temperament Indicator II............................................................................104 4-6 Spearmans rank correlation Associati on between total scor e on Caregiving SelfEfficacy Scale and daily duration of care........................................................................105 4-7 ANOVA Table Association between total score for Caregiving Self-Efficacy Scale and total duration of care in four duration ranges............................................................105 4-8 Spearmans Rank Correlation Associati on between total score on Caregiving SelfEfficacy Scale and difficu lty of care provided................................................................105 4-9 Spearmans Rank Correlation Associati on between total score on Caregiving SelfEfficacy Scale and caregiver health.................................................................................106 4-10 Stepwise multiple linear regression analysis of temperament, self-efficacy, total duration of care, and relati onship to care receiver...........................................................106

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11 LIST OF FIGURES Figure page 3-1 ANOVA Equation Model..................................................................................................89 3-2 Multiple Linear Regression Model....................................................................................89

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12 Abstract of Dissertation Pres ented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy RELATIONSHIPS BETWEEN TEMPER AMENT TYPE AND PERCEIVED SELF-EFFICACY AMONG INFORMAL CAREGIVERS By Teresa A. Tozzo Lyles December 2006 Chair: R. Morgan Pigg, Jr. Major: Health and Human Performance This study examined the relationship between four temperament types, as defined by The Keirsey Temperament Indicator II, and self-effi cacy, as defined by the Caregiving Self-Efficacy Scale, among informal caregivers. The study also examined relationships between self-efficacy and daily duration of care, total dur ation of care, caregiver health, a nd degree of difficulty in care among informal caregivers. Par ticipants included 25 informal caregivers who completed the instrument for the pilot study, a nd 160 who completed the final st udy. Participants in the study were 18 years or older and caring part-time or fu ll-time for someone 21 years of age or older. Most caregivers were White (85.6%), female (82 %), and older than age 50 (83.2%). Most male and female caregivers were categorized unde r the temperament type of Guardians. No significant association existed in the leve l of self-efficacy among the four categories of temperament types. However, using biva riate analysis methods (One-way ANOVA and Spearmans Correlation), when comparing total self -efficacy score with total duration of time in caregiving, caregiver health, and difficulty of care, significan t associations existed (p=.017, p=.020, and p=.045 respectively) Results of a Stepwise Multiple Linear Regression Analysis of temperament, self-efficacy, total duration of care, and relationship to care receiver showed significance in a negative

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13 direction between self-efficacy and total durati on of care, for Artisans (p=.029; coeff b =.882), if the care receiver wa s a friend (p<.001; coeff b =-2.136), and if the care receiver fit the Other response option (p=<.001; coeff b =-1.652). No significance existed between level of self-efficacy, the four temperament types, and duration of care provided by caregivers. If caregivers were Artisans they we re more likely to stay in the car egiver role longer, but if the care receiver was either a friend or another relationship other than the ones listed in the survey (i.e., hospice volunteer), caregivers were more lik ely to spend less time in the caregiver role. Findings from this study will assist friends, family members, health care facility staff, and formal health care providers in (1) assessi ng self-efficacy among caregivers with different temperament types, (2) selecting methods to re ach and assist informal caregivers in their caregiving role more effectively, and (3) iden tifying peer advocates to assist individuals identified as those just entering the caregiver role.

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14 CHAPTER 1 INTRODUCTION With the increase in the numbers of baby boomer s reaching retirement age, the increase in average life span, and the populatio n of older Americans increasi ng dramatically, more spouses, family members, and others provide care to older adults with a chronic or terminal illness. Informal caregiving, defined as care provided by a family member, close friend, or volunteer assistant, has been estimated at $196 billion annually (Arno, Levine & Memmott, 1999). During the latter part of the 1990s, so me 28.8% of persons aged 65 to 74 reported a limitation caused by a chronic condition, and 54.4% repor ted at least one physical or medical disability (Wright, 1997; Arno et al., 1999). Spouses represent more than 30% of caregivers, with an estimated 75% aged 65 and older. Many younger family members also provide part-t ime care and support. Studies show that caring for a spouse with a serious illness, dementia, or other p hysical ailments decreases the caregivers focus on their own preventive health smoking cessation, prop er nutrition, regular exercise, and stress reducti on (Connell, 1994; Cameron, Franche, Cheung, & Stewart, 2002). For example, after assuming caregiving responsib ilities, 39% of informal caregivers ate less nutritionally, 32% decreased thei r exercise regimen, and 43% in creased the amount of smoking (Wright, 1997). The stress and burden of informal caregiving of ten become the responsibility of females in the care receivers family (i.e., mothers, da ughters, daughters-in-law, wives), resulting in negative emotional and physical consequences a nd health risks for female caregivers (Wright, 1997; Sawatzky & Fowler-Kerry, 2003). Female car egivers, specifically car egiver wives, report the highest levels of depressi on in the caregiver popul ation, typically ranging from 28% to 55% in this population. The amount of time spent in the caregiver role infl uences health status,

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15 evidenced by more than 60% of caregivers de veloping health problems after 18 months of providing care for a family member or friend (Wright, 1997). Many men and women aged 65 years and older are retired, but many others continue to work part-time or full-time. Approximately 4.2 million people aged 65 and older remained in the labor force in 2000 (U.S. Department of Health & Human Services, Administration on Aging, 2001). These employed seniors continue to worry about their own health, yet more than 75% of caregivers do not focus on their own health behavior. Caregivers tend to engage more in self-care than in seeking formal health serv ices (American Association of Retired Persons, 2002). Female caregivers tend to seek personal health care only when absolutely necessary and when it does not interfere with caregiving for their spouse (American Association of Retired Persons, 2002). Research Problem In the health care environmen t, formal caregivers (i.e., physicians, nurses, counselors) inquire about patient health status, but they seld om ask caregivers or care receivers about their personal lives. However, personal characteristics of caregivers, such as temperament type, can help explain environmental dynamics, social nor ms, and influence behavior patterns and stress levels of persons receiving care. For exam ple, although the individua l characteristic of temperament type generally remains stable thro ughout life, self-efficacy changes with a new life role or life situation (i .e., becoming a parent or taking on the care of an ill family member). Therefore, it is likely that caregiver temperament can predict levels of overa ll self-efficacy in the care and well-being of the care receiver. Age, ge nder, time in the caregiver role, and overall health of the caregiver may determine medical decisions made for the care receiver and in general for the care giver. This study exam ined relationships between specific temperament types and perceived self-efficacy of ma les and females in a caregiver role.

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16 Rationale Temperament, or the emotional disposition of an indi vidual, rather than personality, relates more closely to the emotional make-up of an i ndividual, and can better predict and determine personality, decision-making, and co ping skills (Morris, 2000). Th e study of temperament dates back to the ancient Greeks w ith the Theory of Humors in 5 B.C. (Heineman, 1995, para 2). Contemporary studies on temperament and pers onality generally appear in business and managerial settings, and also have been used to determine medical and dental student study habits and the ability to work with and interact with others (Morris, 2000). Following extensive research, Katherine Bri ggs identified four dominant personality dimensions: Extroversion-Introversion (E-I), a pers ons focus of attention; Sensing-Intuition (SN), how one gathers information; Thinking-Fe eling (T-F), decision-making process of the individual; and Judging-Perception (J-P), interaction with th e outside world. The four main temperament t ypes used by Keirsey include 16 sub-types (Myers-Briggs, 1985; Daley, 2000; Morris, 2000). Keirsey and Ba tes (1984) re-conceptual ized the personality types envisioned by Myers-Briggs into four temp eraments artisans, guardians, idealists, and rationals that focus on how indi viduals react to and perceive their surroundings. Based on the analysis of the Myers-Briggs Temperament I ndicator, Keirsey created a less complicated and easier method for respondents (Heineman, 1995, para 23; Differen t drums: Kiersey.com, 1998, para. 10). Self-efficacy, a construct first conceptu alized by Bandura as part of his Social Cognitive Theory reflects the belief that an individual can perfor m specific tasks or make intelligent decisions. Self-efficacy, which varies according to situations and life events, also involves the belief that individuals can complete a task or ma ke the best decision for oneself or a loved one. The Caregiver Self-Efficacy Scale used in this study, was conceptualized for the purpose of

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17 assessing self-efficacy in the caregiver ro le (Bandura, 1977; Steffen, McKibbin, Zeiss, Gallagher-Thompson, & Bandura, 2002). Researcher s only recently have begun to study selfefficacy in the caregiver role (Steffen et al., 2002; Gignac & Gottlieb, 1996). To date, few research designs have combined the three variables temperament, selfefficacy, and caregiving. This study will determine if individual temperament type affects perceived self-efficacy in the caregiver role (i.e ., does one temperament type show higher levels of self-efficacy than the other f our types). Lack of such studi es and the plausible relationship between these variables establis hes a need and provides the ra tionale for conducting this study. Research Questions 1. Does a significant association exist between Total Scale Scores on the Caregiving SelfEfficacy Scale and temperament type as determined by the Keirsey Temperament Indicator II? 2. Does a significant association exist between Total Scale Scores on the Caregiving SelfEfficacy Scale and daily duration of care pr ovided by the caregiver? 3. Does a significant association exist between Total Scale Scores on the Caregiving SelfEfficacy Scale and total duration of care pr ovided by the caregiver? 4. Does a significant association exist between Total Scale Scores on the Caregiving SelfEfficacy Scale and intensity/difficulty of care provided by the caregiver? 5. Does a significant association exist in self-effi cacy scores as determined by Total Scale Scores on the Caregiving Self-Efficacy Scale and caregiver health status? 6. Does a significant association exist among overall duration of care and temperament type as determined by the Keirsey Temperament Indicator II self-efficacy scores as determined by Total Scale Scores on the Caregiving Self-Efficacy Scale and relationship to care receiver? Delimitations 1. Participants, aged 18 and older, were volunteers from caregiver support organizations serving the North Central Florida geographical area. 2. Data were collected in calendar years 2005-2006. 3. The Keirsey Temperament Indicator II was us ed to determine temperament type of participants as caregivers.

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18 4. The Caregiving Self-Efficacy Scale was used to determine perceived self-efficacy of participants as caregivers. 5. The Caregiver Information Profile was used to obtain demographic information about participants as caregivers. 6. Participants had served in a caregiving role fo r at least one month for someone with a chronic or terminal illness as defined in this study. Limitations 1. Volunteers who participated in the study may not represent all members of the organizations involved in the study. 2. Data collected during calendar years 2005-2006 may differ from data collected during other time periods. 3. The Keirsey Temperament Indicator II may not address all aspects of temperament among participants as caregivers. 4. The Caregiving Self-Efficacy Scale may not determ ine all aspects of perceived self-efficacy of participants as caregivers. 5. Demographic information obtained by the Caregi ver Information Profile may not capture all pertinent information about pa rticipants as caregivers. 6. The experiences of individuals serving as caregiv ers for different time frames or durations, or for different types of illnesses, may differ from the experiences of par ticipants in this study. Assumptions 1. Volunteers who agreed to particip ate in the study were consider ed adequate to represent the membership of their respective organizations. 2. Data collected during calendar years 2005-2006 were considered adequate for the purpose of the study. 3. The Keirsey Temperament Indicator II was consid ered adequate to address temperament type among participants as caregivers. 4. The Caregiving Self-Efficacy Scale was consider ed adequate to determine perceived selfefficacy of participants as caregivers. 5. Demographic information obtained by the Care giver Information Profile was considered adequate to describe study participants as caregivers. 6. Individuals serving in a caregivi ng role for at least one month for someone with a chronic or terminal illness as defined in the study were considered adequate as participants for the purpose of the study.

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19 Definition of Terms Activities of Daily Living (ADLs) Emotional, spiritual, a nd medical needs provided by a caregiver to a care receiver such as bathing and assistance with eati ng (Arno et al., 1999). Artisans . A temperament type under the Keirsey Indicators, Artisans are concrete in communicating and utilitarian (pra ctical) in implementing goals, a nd they can be highly skilled in tactics, and finding multiple solutions to a problem. Artisans are gifted with tools, such as language, a computer, thoughts or a paint brus h (Artisans: Keirsey.com, 1996, para. 1; Understanding the Four Temperamen t Patterns: The why, 2001, para 7). Care receiver An individual who receives car e from an informal caregiver. Formal caregivers Individuals in a health prof ession, such as primary physicians, specialists, nurses, therapists, and counselors, who provide care for an individual in a formal care setting such as a hospital, privat e practice, or medical facility. Guardians . A temperament type under the Keirse y Indicators. Guardians are concrete in communicating and cooperative in implementi ng goals, and they can be highly skilled in logistics (Heineman, 1995, para 23; Understanding the four temper ament patterns, 2001, para 7). Idealists . A temperament type under the Keirsey Indicators. Idealists are abstract in communicating and cooperative in implementing goals, and they can be highly skilled in diplomatic integration (Heinema n, 1995, para 21; Different dr ums: Kiersey.com, 1998, para. 10). Informal caregiver An individual vol untarily caring for anothe r person (care receiver) including friends or relatives. The individua l needing care experiences health problems or disabilities, and needs assistan ce with grocery shopping, bathing, eat ing, and dressing. Informal caregiving includes care provided by spouses, chil dren, other family members, and friends in a home or other informal setting.

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20 Instrumental activity of daily living (IADLs ). Tasks performed by a caregiver for a care receiver such as helping w ith finances and helping to prepare meals (A rno et al., 1999). Rationals. A temperament type under the Keirsey Indicators, Rationals are abstract in communicating and utilitarian in implementing goals, and they can be highly skilled in strategic analysis (Heineman, 1995, para. 20; Understandi ng the four temperament patterns: The why, 2001, para 7). Self-efficacy. A component or construct of several health behavior and health education theories that addresses individua ls personal beliefs that they can perform a specific behavior or action, or that they can overcome temptations, ba rriers, or negative beha viors created by others in their environment (Steffen et al., 2002). Social support The process of seeking or receiving emotional, instrumental, medical, or monetary provisions to increase an individuals self-esteem or e fficacy. Social support can be formal, as in support from health care providers or informal as from family and friends. Temperament The emotional dispos ition of an individual which, in turn, directs personality and choices in term s of behavior (Heineman, 1995, pa ra 20; Understanding the four temperament patterns: The why, 2001, para. 7). Summary As the U.S. population continues to age, more individuals are becoming informal caregivers for family members and friends with ch ronic and terminal illn esses. Much of the expenses that caregivers incur are out-of-pocket. Caregiver stress causes individuals to neglect their own health, potentially creating more seriou s health problems for the future. While all caregivers encounter stress, indivi duals respond differently to the initial experience and to the experience over time. To date few studies have explored the rela tionships existing among

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21 temperament, self-efficacy, and caregiving. This study examined those relationships among individuals serving as informal caregivers in the northeast Florida geographical area.

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22 CHAPTER 2 REVIEW OF THE LITERATURE This study explored relationships among te mperament, self-efficacy, and caregiving among individuals serving as informal caregivers in the northeast Florid a geographical area. This chapter presents a review of literature related to these topics, factors that influence individuals serving in the informal caregiver ro le, research that defi nes and describes each temperament type, and research that examines se lf-efficacy in relation to disease as applied to formal and informal caregivers. Informal Caregivers and Factors Affecting Their Roles Informal Caregiving Informal caregiving refers to care provided by family and friends and represents a part of our nations multiple medical solutions and problem s. Most individuals who become informal caregivers assume the role due to a traumatic event, catastrophic illness, progressive chronic illness (e.g., Alzheimers Disease), or death of one parent where the surviving parent needs care. Caregiving situations vary because of family dynamics (i.e., younger versus older caregivers), disease diagnosed (i.e., heart disease versus Alzheimers Disease), time spent in the caregiving role, and intensity of care required. Fo r example, intensity of caregiving varies from driving the care receiver to physician appointment s to changing a catheter bag. Apart from the primary caregiver, caregiving often involves a circle of extended family or friends, who may first notice subtle changes in the pers on needing care. Caregiver dist ress often results from erratic behavior of care receivers rath er than the disease itself (Heb ert, Levesque, Vezina, Lavoie, Ducharme, Gendron, Preville, Voyer, & D ubois, 2003; Small, McDonnell, Brooks, & Papadopoulos, 2002; Gottlieb & Rooney, 2004; K. Meneskie, Personal Communication via email, February 18, 2005; D. Rimkunas, Personal Communication via email, February 25, 2005).

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23 For example, subtle changes in someone with early onset of Alzheimers Disease may include intact long-term memory but poor short-term memory, confusion, fear and anger at loved ones. Emotional, spiritual, and medical needs, assi stance with activities of daily living (bathing, dressing, transferring in and out of bed, assistance with eating) and instrumental activities of daily living (assistance with finances, prepar ing meals, housekeeping, la undry) increasingly are met by family and friends, including assistance by minor children, adol escents, and young adults who may live in the home with th e care receiver. Although difficult to assess, the monetary value of services provided by these caregivers is substantial. Researchers predict that the value of family caregiving will exceed that of nur sing home care by a 2:1 margin in the new millennium (Arno et al., 1999; University of Te xas, School of Nursing at Houston, Center on Aging, 2005; D. Gatsche, personal communica tion, September 22, 2004; E. Cairns, personal communication, September 22, 2004). Changes in the Caregiver Role While advances in health and medical care have increased the lifespan for adult citizens, financial provisions for the elderly have not a dvanced at the same pace. When the Medicare system took effect in the 1960s, medical costs we re projected and estab lished for those aged 50 and older. However, costs and provisions to a ssist those living into th eir 80s and beyond did not fit into the long-term vision for the original syst em. The current health care system does not meet the needs of elderly individuals who suffer from chronic and terminal illnesses (Arno et al., 1999). Nationwide, as the population ages, informal car egiving represents an essential asset. More than 75 million baby boomers will be age 65 and older in the 21st century with the fastest growing segment of the elderl y population, those aged 80 and ol der, increasing from 122,000 at the beginning of the 20th Century to more than 4.3 million in 2000 (Adler, 2002; Partnership for

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24 Solutions, 2002; American Association for Geriat ric Psychiatry: Health care professionals, 2004, para. 1). In 1995, Floridas populat ion of elderly of those age 65 and older made up 19% of the total population the largest propo rtion of any state and the pe rcentage of this population was projected to increase to 26% of the total population by 2025. Ther efore, Florida is a focus of future concern for the states health ca re system (Goulding, Rogers, & Smith, 2003). Currently, between 40% and 80% of caregivers live with the care receiver. Almost half of caregivers serve in that role for at least five ye ars, with eight years as the average time spent in caregiving because the progression of the care re ceivers illness often is slow. The elderly population, those aged 65 and older, numbered 35 million in 2000, or approximately 12.4% of the U.S. population. The same population group is expected to increase by more than 20% by 2030, with about 70 million individuals aged 65 a nd older who will be alive in the U.S. by 2030 (Goulding et al., 2003; National Family Caregive rs Association: Caregiving Statistics, 2000, para. 1; U.S. Department of Health & Human Services, Administration on Aging, 2001; National Family Caregivers Association: Family Ca regivers and Caregiving Families 2001, 2001, pg. 4, para. 2). According to the National Family Caregive rs Association (George & Kansas, 2001, para. 7), approximately 54 million Americans, or abou t 27% of the total population, were involved in family caregiving in 1999, but le ss than 19% of caregivers felt they had received adequate training to deal with the new role (National Fa mily Caregivers Association, Family Caregivers and Caregiving Families, 2001, pg. 12, para. 1). Because womens status in the home and workplace has changed during the past 50 years, the impact of caregiving disproportionately affects womens roles and duties. While 35 % to 40% of men age 40 and older actively participate in caregiving, women most often fill the role of primary caregiver. Approximately

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25 70% of primary caregivers are women aged 60 or ol der, and 33% of female caregivers aged 36 to 50 are raising minor children while caring for an elderly parent or family member (National Family Caregivers Association, Caregivers A ssociation, Family Caregivers and Caregiving families, 2001, pg. 4, para. 4; National Family Ca regivers Association, Education and Resources, Yes, I am a Family Caregiver, Ca regiver Resource, 2002, para. 7). The number of individuals with chronic conditions also cont inues to increase. In 2000, approximately 50 million individuals with terminal or chronic illnesses received some type of care from a family member or friend. By 2030, an estimated 150 million people, or 48% of the population, will be living with a chronic condition (U.S. Department of Health & Human Services, Administration on Agi ng, 2001; Partnership for Solutions 2002). Of individuals aged 65 and older, 80% will have at least one chr onic illness, and 50% will have two or more (Goulding, et al., 2003). Currently, about 20% of individuals in the U.S. have multiple chronic illnesses. Most of the emotional and financial burden of caring for the chronically ill falls outside the health care system. The chronically ill, who often n eed long-term care, may receive mixed advice about medications, treatments, and health care regimens from formal caregivers (physicians, nurses), thereby incr easing the cost of managing their illness and increasing the stress on informal caregivers (Partnerships for Solutions, 2002). Early in the caregiver role, de pending on the type (chronic vers us terminal) and duration of disease or illness, caregiver responsibilities can be overwhelming. When a care receiver has been diagnosed with cancer, researchers report that the months immediately following an initial hospitalization for surgery or treatment prove the most difficult. However, caregivers for those with dementia or Alzheimers Disease report th at stress increases as the disease progresses (Weitzner, Jacobsen, Wagner, Friedland, & C ox, 1999; Alzheimers Caregiver Support Online,

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26 2002, para. 6). In a 1997 study of caregivers, 37 % reported they receive d no paid assistance, 35% of caregivers indicated they did not fi nd enough time for themselves, and 29% needed assistance in managing physical or emotional stress (Wagner, 1997; National Alliance for Caregiving & AARP, 2004, pg. 18, para. 1). On average, 41% of caregiving duties require constant care, which means at least eight hours of daily full-time care. Family careg ivers often experience depressive symptoms, characterized by anxiety, which is usually accomp anied by a decrease in caregiver healthy eating and exercise habits. The National Family Care giver Association (2001) reports a decline in healthy eating behavior from 70% to 59%, and a decline in regul ar exercise from 61% to 30%, from before becoming a caregiver to after beco ming a caregiver. Caregivers also reported a decline from 70% to 47% in consulting a physic ian about their own health (National Family Caregivers Association, Who are family caregivers?, 2001, para. 5). Caregiver quality of life can be as bad as, or worse than, that experienced by the care receiver, especial ly when the caregiver also experiences chronic or terminal illness. Caregivers may experience an increase in emotional and financial difficulties as the disease or i llness of the care receiver progresses. Many caregivers are forced to decrease their workload or quit work entirely to manage caregiver responsibilities (Weitz ner, et al., 1999). Medical Costs of Caregiving Society generally underestimates and under-appr eciates the value of caregiver time, lost wages, and medical costs for their own medical need s. As an example of government attempts to address this need, the Clinton Administration proposed a $6 bil lion package for long-term care solutions of chronically ill patients and their families. The U.S. spends more than any other country on the health care of individuals 65 and older ($12,100 per person). Currently, health care by in formal caregivers represents an estimated $196

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27 billion (approximately 18%) of to tal national health care spending, currently at about $1 trillion. However, informal caregiving is not calculated in the national health care budget. Caregiver financial burden increases as the disease/illness progresses and as caregiver demands increase (Goulding et al., 2003; Chou, 2000; Yun, Rhee, Kang, Lee, Bang, Lee, Kim, Kim, Shin, & Hong, 2004; Arno, et al., 1999). Florida has traditionally been known as a state with a large elderly population. Many elderly people retire to the stat e, thus requiring medical care and at tention for end-of-life years. Florida ranks fourth in the nation for number of informal caregivers (more than 1.6 million), fourth for annual informal caregi ver hours per billion (1.7), and f ourth for annual dollar value of informal caregiver hours (about $15 billion). Ca lifornia (first), Texas (second) and New York (third) are ranked above Florida in all three categories (National Family Ca regivers Association and the Albert Einstein College of Medicine, 2002). Costs of medication and treatment for the ch ronically ill are often paid out-of-pocket. Expenses are absorbed by family members or friends who eventually become informal caregivers. These unexpected expenses can become part of the total ca regiving burden (Scholte op Reimer, de Haan, Rijnders, Limburg, & va n den Bos, 1998). Out-of-pocket expenses multiply incrementally with the number of chronic conditions, such as $130 per year for prescription drugs for one chronic condition vers us $930 annually for five or more conditions (Partnership for Solutions, 2002). Some nationa l estimates of the value of annual home care services provided by caregivers are close to $200 billion (National Family Caregivers Association, Who are family caregivers?, 2004, pg. 2, para. 4). Caregiving affects the U.S. health care system and caregivers personal health. Caregivers with chronic illnesses report higher levels of st ress and have a 63% higher mortality rate than

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28 same-age counterparts who are not caregivers (Schultz & Beach, 1999) Individuals who provide care in excess of 30 hours a week experien ce more symptoms of stress and anxiety. Two studies reported that intensity and difficulty of care required by cancer and dementia patients dictates the number of week ly hours and amount of out-of-poc ket medical and other costs provided by family to the sick individual (H ayman, Langa, Kabeto, Katz DeMonner, Chernew, Slavin, & Fendrick, 2001; Langa, Chewnew, Kabet o, Herzog, Ofstedal,l Willis, Wallace, Mucha, Straus, & Fendrick, 2001). Alzheimers Disease is probably the most e xpensive long-term dis ease to treat, with current annual expenses estimated as high as $29. 1 billion, and with approximately 50% of those with Alzheimers Disease or dementia living at home (Small, et al., 2002 ; Hebert, et al., 2003). In addition to Alzheimers Disease, other forms of dementia, such as those associated with stroke and Parkinsons disease will create a greater need and increased stress among informal caregivers (Vitaliano, Zhang, & Scanlan, 2003). Care givers for those with Alzheimers Disease miss about five days of work during a six-mont h period and average about 85 hours of care each week (85 + 60.2). Caregivers for those with more severe symptoms miss correspondingly more work. Researchers in this study found that in tervention (home health care assistance) and its costs depend on stage of the disease and othe r factors such as when interventions are implemented (Small et al., 2002, p. 323). Within the past few years, researchers have assessed benefits and costs of informal caregiving. Results showed that as time spent in the informal caregiver role increased, the marginal benefits decreased and the marginal costs increased. When asked what type of assistance they would most appreciate, most car egivers indicated that they needed assistance with housework (Smith & Wright, 1994; van de n Berg, Brouwer, Exel, Koopmanschap, 2004).

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29 Lost income of caregivers, out-of-pocket expens es, and additional health care costs figure into estimating total co sts of informal caregiving for some one with dementia (Moore, Zhu, & Clipp, 2001). Researchers calculate d the total annual costs of info rmal care for dementia patients coming from lost wages of caregivers at $10,709 a nd the cost of caregiver time at $6,295. These calculations included assistance with all types of services (i.e., Activities of Daily Living and Instrumental Activities of Daily Living) provide d to care receivers (Moo re, et al., 2001). A study of Korean caregivers caring for those w ith cancer, showed that caregivers quality of life decreased incrementally with the amount of family savings that were depleted, which included loss of a job or other source of income (p<0.0001) (Yun et al., 2004). In a study based in Arkansas that expl ored easing caregiver burden, nursing home placement, and caregiver-care recipient relationshi ps, researchers found that caregivers in the treatment group, who were paid by the researchers to participate in the st udy, seemed to be less stressed and reported better physical and emotional health than those who were not paid (Foster, Brown, Phillips, & Carlson, 2005). Health Risks of Caregiving Many factors influence the health behavior and health status of careg ivers, including the type and severity of the care receivers illness and the physical and mental restrictions of both caregiver and care r eceiver. About one-third of caregivers of an elderly in dividual will suffer some physical or emotional distress, more than 10% will have some mental or health problems, and many will also experience chronic fatigue (National Alliance for Caregiving & AARP, 2004; Foster et al., 2005; T eel & Press, 1999). Caregiver wives report higher le vels of depression and lower levels of self-esteem than caregiver daughters or daughters-in-law (Collin s & Jones, 1997; Pinquart & Sorensen, 2005). Rates of depression among caregiv er women range from 28% to 55% versus 14% to 16% among

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30 the general population of women. While male and female caregivers differ in their coping mechanisms, caregiver wives are usually more emotionally involved than caregiver husbands. As time progresses, women develop and adopt mo re problem-solving coping strategies similar to those used by husband caregivers (Wright, 1997, p. 272). Coping strategi es in the caregiver role include drawing on a networ k of individuals for social su pport and using different methods and sources to learn more about th e disease or disorder. However, during the course of a chronic disease, available social support can dec line over time (Glanz, Reimer, & Lewis, 2002). Compared to depressed individu als in the general population, most careg ivers report fewer visits to physicians and other he alth care professionals, greater use of psychotropic medications for anxiety, use of alcohol and tobacco as c oping mechanisms, and eating and exercising less after assuming the caregiver role (Collins & Jones, 1997; Wright, 1997). Even when a caregiver had previously discussed his or her mental health concerns before the care recipients diagnosis, less than half (46%) were willing to use mental health services and, as stated above, used more drugs (Vanderweker, Laff, Kadan-Lottick, Mc Coll, & Prigerson, 2005). However, some caregivers increase the number of self-visits to a physician, a nd increase the amount of drugs used, perhaps to restore a balance in healthy sleeping, and decrease exercise and leisure time (Wright, 1997). Placement of the care receiver in a caregivi ng facility, such as a nursing home, may precede a significant decline in both the care receivers and the ca regivers health. The decline can include lack of sleep and improper rest. Ca regivers with more health problems are more likely to serve less time in the caregiving role. The study also found that individuals caring for those with a form of dementia (i .e., Alzheimers Disease) are at gr eater risk of declining health (Scharlach, Midanik, Runkle, & Soghikian, 1997).

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31 The progression of symptoms and overall declin e in health of the care receiver may leave caregivers feeling helpless and confused, especially when the caregivers own health begins to decline, and as work and other family obligations increase (Sch arlack, et al., 1997; K. Mladinich, personal communication, August 25, 2004). Once a caregiver is placed in assisted living, sp ousal caregivers continue to function in a caregiver role by visiting the spouse almost da ily. Not surprisingly, th e health of spousal caregivers can continue to declin e even after their significant othe r enters a care facility because this population of caregivers tend to be older than age 65 (Wright, 1997). Most care recipients with dementia are institutionalized, on average, from two to six years after diagnosis (Mausbach, Coon, Depp, Rabinowitz, Wilson, Arias, Kr aemer, Thompson, Lane, Gallagher-Thompson, 2004). However, most studies on caregivers a nd care recipients with dementia focus on the Caucasian population. This observation about the literature on caregivers is relevant because many Caucasian caregivers and care receivers ha ve access to better health care, and a different type of support system than Hispanic or African American caregivers. Minority caregivers tend to keep family members in the home longer ev en though the care recipient may have more debilitating illnesses. Therefore, other studies should focu s on a culturally diverse population to assist with needs and demands of caregiv ers helping with those with dementia. Relationship between caregiver health and level of caregiving. Other studies show that individuals providing m oderate to high levels of caregiving, when compared to non-caregivers, are less likely to maintain adequa te health behaviors or use preventive services, such as remembering physicians appointments getting prescriptions refilled, and getting adequate rest (Burton, Newsom, Schultz Hirsch, & German, 1997). Those providing a high level of care reported not getting enough sleep (24%), not getting enough exercise (29%), and not resting adequately when sick (14%) were all significant at the

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32 p<.0001 level. Those providing higher levels of car e also were more likely to forget to take medications (19%, p<.001) and less likely to make medical appointments (7%, p<.05). The relationship between perceived sense of control and personal preventive health behaviors was significant at all levels of careg iving and at both levels for sens e of control under variables such as not getting enough rest (P<0.0001) (Burton, et. al., 1997). For the population in this study, confidence, which is defined as sense of control, in the caregiver role seems to influence health behaviors for the caregiver when a caregivers feelings more powerless, their personal care decreases. Even if care receivers have insurance that provides long-term care, studies confirm that approximately 50% of caregivers show no change in the care they provide indicating that even with formal caregiving options, the informal careg iver continues to provide essential assistance to the care receiver. Essential assistance incl uded daily visits to the care receiver, feeding, bathing, dressing, and providing pres cription medications. These out-o f-pocket expenses are part of the overall caregiver burden and contribute to caregiver stress (C ohen, Miller, & Weinrobe, 2001). A five-year study assessing tran sitions in caregiver roles f ound that about 50% experienced some type of change, including the death of a spouse or a spouse being placed in a long-term facility (Burton, Zdaniuk, Schulz, Jackson, & Hirsch, 2003). Individu als who changed from non-caregiver status to heavy caregiver status involving m eeting the most basic physical functions showed more depres sive symptoms and were more likely to exhibit unhealthy behaviors (5.59 vs. 6.94, p < .01) (Burton, et al., 2003). Schultz and Beach (1999) explored the associ ation between caregiving and mortality in sub-groups of caregivers physiologically comp romised and exposed to varying levels of

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33 caregiving strain (p. 2216). Af ter four years of follow-up, d eaths among those providing care and those who had reported physical strain (31 of 179, 17.3%) were si gnificant (p<.025). When assessing stress levels preand postbereavement among caregivers, those in the control group (non-caregivers ) recorded higher post-bereav ement rates of depression. Depression remained unchanged for caregivers with high levels of strain during the caregiver role. African-American caregivers had signifi cantly lower depression symptom scores than Whites at both pre-bereavement and post-bereav ement (Schultz, Beach, Lind, Martire, Hirsch, Jackson, & Burton, 2001). Another study (N=52) measured sociodemographic, physical, and psychosocial characteristics of family caregivers for stroke survivors including satisfaction with health care resources, social support, activi ties of daily living, and instrument al activities for daily living (Grant, Weaver, Elliott, Bartoluc ci, & Giger, 2004). The study found Caucasians at about four times higher risk for depression compared to th eir minority counterparts (i.e., African American and Hispanic individuals). Results suggest that caregivers who experience a decrease in their sense of belonging with others may be at high er risk of distress in the weeks af ter the care receiver returns home from a hospital stay from stroke-related complicatio ns (Grant et al., 2004). In a study exploring predisposing, enabling, and need components of caregivers use of care services, caregivers aged 65 years or older showed higher depressive symptoms and used more formal services, such as in-home care services than younger caregivers (Bookwala, Zdaniuk, Burton, Lind, Jackson, Schulz, 2004). Percei ved sense of mastery of formal services related positively to self-efficacy am ong caregivers (Bookwala et al., 2004). With chronic illnesses, such as heart disease or heart failure, caregiver quality of life may be compromised. Caregivers, and care receivers with heart failure, reported their overall quality

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34 of life, measured as sense of well being. Care receivers rated their quality of life lower than their caregivers prior to being hospitalized (p-0.035) (Luttik, Jaarsma, Veeger, & van Veldhuisen, 2005). Caregiver quality of life was seen as fairly st able during the course of the study, while care receiver quality of life fluctu ated with the decline of health and their subsequent stabilization. Care receivers with cancer/terminal illness. Losing a family member to a terminal illness is a stressful life event, but if an individual is a caregiver of the terminally ill family member, the time leading up to the loss can be an added stressor as well. End of life issues and expe riences may involve hospital care and Hospice care (Haley, LaMonde, Han, Burton, & Schonwetter, 2003). Caregiver distress was examined as it relate d to amount of time spent assisting advanced cancer patients (those estimated to have less than six months of life remaining). Caregivers with less than a high school education reported significantly more depr ession, more tension, and more total mood disturbances. In general, caregiver s of cancer patients experience more physically debilitating symptoms in addition to depression (Cameron et al., 2002). Caregivers of patients with terminal illne ss were recruited for a study on bereavement (Ferrario, Cardillo, Vicario, Balzar ini, & Zotti, 2004). Caregivers who were asked to complete an instrument with scales that measured care giver strain, cognitive func tion, and life satisfaction, were assessed at three, six and 12 months after th e death of their loved one. Results showed that caregivers who perceived more emo tional burden were more likely to indicate less satisfaction with life overall. Satisfaction with life decreased significantly from three months to 12 months (P=0.001). The relationship the caregiver had with the spouse was al so a predictor of bereavement maladjustment after 12 months (P< 0.001) (Ferrario et al., 2004) if the

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35 caregiver reported a more positive relationship with their spouse, they tended to report higher levels of life satisfaction post-bereavement. In another study, caregivers we re recruited to assess the impact for caregiving of a terminally ill individual who recently had di ed (Brazil, Bedard, Willison, & Hode, 2003). Caregivers were asked to iden tify ADLs and how long they had provided assistance for specific tasks. Most of the caregivers in this study were female, the spouse of the patient, lived in the home with the care receiver, a nd did not work outside the home. The number of visits to a general practitioner and caregiver age were significant determinants of high caregiver burden (p=0.043). Caregivers tending to terminally ill individuals especially those in palliative care or hospice care, experience different levels of distre ss and seek different levels of support. In palliative care, caregivers anti cipate the death of their loved ones. When caregivers were presented with a support interven tion (i.e., learning how to c ope and exchanging information with others and in seeking formal or informal support), caregivers who were employed full-time were less likely to accept the support inte rvention (P=0.006) (Harding, Higginson, Leam, Donaldson, Pearce, George, Robinson, & Taylor, 2003). Spousal caregivers of patients with end-stag e lung cancer and dementia (diagnosed with less than six months of life remaining) were in terviewed to assess daily duration of care, total time in the caregiving role, caregi ver self-reported health, self-re ported (perceived) benefits of caregiving, and level of care receiver impairment (i.e., abi lities to perform ADLs and IADLs) (Haley et al., 2003). The only variable that was significantly associ ated with caregiver depression was behavioral problems of the care receiver (p<0.05). No other variables, including

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36 patient diagnosis and hours of care each week, were significan tly associated with caregiver stress. Caregivers for patients diagnosed with metast atic breast cancer were assessed for financial burden for palliative and other treatment (G runfeld, Coyle, Whelan, Clinch, Reyno, Earle, Willan, Viola, Coristine, Janz, Glossop, 2004). Care givers who were depressed at the start of the terminal period, as defined in th is study, were equally as depressed at the start of the palliative period (p=0.02). The amount of money spent on prescription drugs was the best indicator of financial burden among caregivers, especially thos e without additional health insurance coverage (p=0.04) (Grunfeld et al., 2004). Similarly, researchers studied caregiving during the terminal phase of illness for the care receiver (Brazil, et al., 2002). The last three months of life prove d to be the most critical due to the need for increased patient care and an increas e in the need for outside services, such as nursing care assistance. Caregiver burden was attributed to the impact caregiving has on the personal health of caregivers and on the extent to which caregiving interrupts the usual activities of the caregiver (Brazi l et al., 2002, p. 381). Among caregivers with partners who were can cer patients, the impact of caregiving on disrupted schedules and caregiver self-esteem decreased in the six months following the care receivers discharge from a health care facility. As th e care receivers health improved, so did the health of the caregiver (Nijboer, Tempelaar, Sa nderman, Triemstra, Spruijt, van den Bos, 1998). Care receivers with mental illness. Those caring for individuals with any kind of mental illness may carry the stigma of their loved one and experience difficult care management which include factors such as caring for an older individual with mental illn ess and living in the home with the care receiver (Groff, Burns, Swanson, Swartz, Wagner, & Tompson, 2004).

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37 Caregivers of care recipients diagnosed with schizophrenia were assessed for stress and stress-related symptoms. Interviews were provi ded at baseline, then four, eight and twelve months after baseline. Unlike most caregiver stud ies, almost half (41%) of the caregivers were male and 63% were Black. Results of the st udy indicate that those who lived with the care recipient were more likely to have higher self-r eported levels of strain (p<0.001), and the more days the care receiver spent in outpatient care, the le ss strain on the caregiver (Groff et al., 2004). Care receivers with dementia Well-documented studies of caring for someone with dementia have shown that the caregiver is at greater risk of having a psychological disorder than those in other caregiving roles and in the same age-group population (McCona ghy & Caltabiano, 2005; Covinsky, Newcomer, Fox, Wood, Sands, Dane, & Yaffe, 2003) Dementia is a debilitati ng disease with an often longterm progression. While care receivers may be physically capable, their mental health deteriorates gradually. Acknowledging the risks to caregivers of dementia patients is important for clinicians and formal caregivers because me ntal and physical debilitation is complex and affected by many factors (De Frias, Tuokko, Rosenberg, 2005; Covi nsky et al., 2003). Caregiver wives of Alzheimers Disease pa tients showed lower overall morale than caregiver husbands (Collins & Jones, 1997; Wright, 1997; Eis dorfer, Czaja, Loewenstein, Rubert, Arguelles, Mitrani, Szapocznik, 2003). In general, caregivers of those with any form of dementia (i.e., Alzheimers Disease) are more likely than non-caregiver s to experience higher levels of depression, anxiety, and poo rer health (Mausbach et al., 2004). Caregivers and care receivers who had been diagnosed with dementia were assessed for health in the paired relationship. Caregive rs who reported higher caregiver burden were more likely to be in poorer psychological health (P < 0.05) (McC onaghy & Caltabiano, 2005).

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38 In a longitudinal study of individuals cari ng for someone diagnosed with dementia, researchers examined the use of a physician by ca regivers (Baumgarten, Battista, Infante-Rivard, Hanley, Becker, Bilker, & Gaut hier, 1997). Caregivers need psychiatric assistance 10 times more often than non-caregivers (p=.008), but they did not necessa rily seek physician care at a higher rate than non-caregivers. Caregivers self-reported hea lth status and the relationshi p between caregiver and care receiver mental health, were assessed to comp are demands on caring for older individuals with dementia (De Fries et al., 2005). Older caregi vers had higher self-esteem and had more support from family members. Caregivers who were ol der, physically healthier, and who reported fewer health issues from being a caregiver, were more likely to report having poore r health if the care recipient was male (p<0.05) (De Fries, et al., 2005). Few studies have assessed the characteristics of both caregivers and care receivers with dementia to predict depressive symptoms among th e caregivers. Patient tr aits associated with caregiver depression include le ss education, being younger, being male, being Hispanic, and depending more on the caregiver for Activities of Daily Living (ADLs) (P<.001). Caregiver characteristics significantly associated with their depression include their re lationship to the care receiver (significant for being a wife versus husband), hours spent caregiving each week, and caregiver health (Covinsky et al., 2003). Hispanic caregive rs displayed higher rates of depression, possibly due to expect ations of the caregiving role, denial about care receiver disease, and language barriers with formal care providers. Wackerbarth and Johnson (2002) studied essentia l information and support needs of family caregivers for individuals with Alzheimers Dise ase and dementia. Respondents reported a need for information: general information (i.e., how to plan), diagnosis and treatment information

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39 (i.e., results of tests, help with treatment decisions), and legal information relating to financial issues (i.e., health plan coverage, legal term s). When compared to men, women used more emotion-focused coping strategies, which are asso ciated with higher levels of negative health outcomes (Wackerbarth & Johnson, 2002). Also, fe male caregivers experienced more stress and poorer overall health than male caregivers (Nijboer, Triemstra, Tempelaar, Mulder, Sanderman, & van den Bos, 2000; Dilworth-Anderson, et al., 2004). Degree of Support and Caregiver Distress Caregiving and health risks Biochemically and psychologically, caregiving pr oduces a great deal of stress. One study determined that individuals under stress have lower antibody response to vaccinations and lower counts of natural killer cell act ivities (Davis, Weaver, Zamr ini, Stevens, Kang., & Parker, 2004, p. 91). When looking at biochemical cha nges, specifically cortisol production in caregivers of individuals with Alzheimers Dis ease, significant differences occurred between those in a non-caregiving role compared to ca regivers (P=0.006). Cortisol levels were determined through saliva samples in caregiver wives. Approximately 46% of total caregiver wives were taking psychotropic me dications, but 80% of total careg iver wives said their overall health was good or excel lent (Davis et al., 2004). Caregiving especially can affect functioni ng of the immune response and heart rate reactivity, blood pressure levels and mortality among some olde r spousal caregiv ers (DilworthAnderson, Goodwin, & Williams, 2004). In a meta-a nalysis that assessed stress hormones as a measure of physiological function in caregivers, researchers f ound that some hormones affect cardiac functioning (cortisol, epin ephrine, norepinephrine), and ot hers affect immune response (norepinephrine, prolactin) (Vitali ano et al., 2003). Therefore, th e longer individuals are in the caregiving role, the longer they are exposed to stress hormones that affect cardiac and immune

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40 function. Some studies ha ve defined primary stressors as those associated with the health of the care recipient, while secondary st ressors were associated with be ing a caregiver apart from the caregiving role (i.e., dealing w ith workplace situations and de aling with family members) (Amirkhanyan & Wolf, 2003). With the growing number of individuals livi ng well into their 80s and more individuals separated from their elderly family members, more older individuals are car ing for those in their same age group or even older (Ekwall, Sivber g, & Hallberg, 2004). In a Swedish research study on older informal caregivers (age, M=81.8 years) researchers found that women who had higher levels of involvement in supervising care for an other individual (p<0.001), and assisting with Instrumental Activities of Daily Living (IADLs) wa s positively associated with better quality of life for the older caregiver (Amirkhanya & Wolf, 2003). Caregiving compromises ones mental and phys ical health, including depression, low selfesteem, and possible substance abuse, all of whic h can be indicators of potential frustration and possible care receiver abuse. In a study assess ing potentially harmful behavior (Beach, Schultz, Williamson, Miller, Weiner, & Lance, 2005), inform al caregivers and their care recipients were asked how often help was needed. For example, caregivers were asked how often they had to provide assistance with Activities of Daily Living (ADLs) or IADLs to the care recipient, and the care recipients were asked how often they asked for assistance for the same tasks (Beach et al., 2005). Care recipients who reported needing mo re ADL and IADL assistance and who were in poorer health were more likely to be the recipien ts of harmful behavior from the caregiver (i.e., yelling, insulting) (Beach et al., 2005). Logsdon and Robinson (2000) suggested five essent ial characteristics of social support that may influence ones ability to effectively ma tch recipient needs and expected support from

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41 someone with whom the caregiver may share an intimate relationship. Negative support or nonsupport among women caring for t hose with dementia had a negative impact on caregiver health. Women cited unmet expectations for support as the most pervasive difficulty (Neufeld & Harrison, 2003, p. 327), a nd their responses were influe nced by type of relationship between caregiver and helper. Negative support from family or friends included conflict between the caregiver and others in determini ng the health status of the care receiver and criticism of caregivers decisions in caring for care recipients. Caregivers and family support Family systems and family dynamics play an important role in determining caregiver emotional function (Mitrani, Feaster, McCabe Czaja, & Szapoczni k, 2005). Using the structural family theory, Hispanic and non-Hispan ic caregivers (N=177) were assessed at three intervals after starting in the caregiver role (6, 12, and 18 months) based on consistent and repeated patterns of interactions within the family unit. Researchers tested items for an effective measure of family and caregiving. Cultural dynami cs plays an important role in the Hispanic population, especially those invol ved in caregiving. Enmeshme nt, or the interference and boundary violations between family members, is an example of cultural dynamics assessed in this study. Hispanic family members often use enme shment as a protective factor, so as not to deal with certain issues as a ca regiver, such as stress levels a nd difficulty of care it is assumed that Hispanic men and women will care for sick and elderly family members, regardless of their social or economic status (Mitrani et al., p. 452). Caregiver employment status outside the home and informal caregiver burden were predictors of caregivers level of mental health (Cannuscio, Cold itz, Rimm, Berkman, Jones, & Kawachi, 2004). The correlation was observe d among women who do not work outside the home, who were caring for a spouse, and had high levels of stress. Si milarly, the association

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42 between women who do work and provide spousal ca re were also at high stress levels. Stress levels were not as high among car egivers of parents. The gro up with the highest risk for depression was women who provide d more than 36 hours a week of care and who had few social ties (Canniscio et al., 2004). One predictor of caregiver burden is the ease with which care recipients can follow and adhere to health care regimens. Perceived pressure in the care giving role correlated with more psychological distress (Pott, Deeg, Van Dyc k, & Jonker, 1998, p. 47). In a similar study on caregiver burden and how well care receivers gave attention to their own health care, a positive correlation was found between care givers personal resources, self-esteem, general social support, and caregiver burden (Greenberger & Litwin, 2003). St udies assessing those individuals who cared for Alzheimers diseas e patients showed that, when outside support increased in dealing with patient problem behavi or, negative reactions to the behavior by the caregiver decreased (Heber t, et al., 2003). In a study of patient-caregiver groupings, w ith patients in advanced stages of cancer, researchers found that elevated levels of anxiet y in patients were dir ectly associated with higher levels of anxiety in th eir caregivers and that caregive rs felt they were concerned for their mental health after the cancer diagnosis of the patient (Harding, Higginson, & Donaldson, 2003, p. 640; Vanderwerker, et al., 2005). This study showed a direct relationship between decline in informal caregiver psychological hea lth and increased caregiver burden with patient pain and anxiety. Cultural and Ethnic Factors in Caregiving Research on caregivers has traditionally focused on White (Caucasian) individuals. Minorities in the United States experience at leas t twice the rate of ch ronic illness, including dementia, possibly due to the lack of adequate he alth care, financial resources, medical choices,

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43 and information about their care (Neary & Ma honey, 2005). African Am ericans historically have extended the caregiving ro le to relatives and friends outside the immediate family to survive generations of racial oppression and economic hardships (Hamilton & Sandelowski, 2003, p. 665). Cultural rituals, relig ious experience, and traditions (i.e., normative experience) affect those in the caregiver role and those who require care (Koffm an & Higginson, 2003; Roff, Burgio, Gitlin, Nichols, Ch aplin, & Hardin, 2004). When compared to their White counterpart s, African Americans have a lower life expectancy and were more like ly to be in poorer physical health (69.6 years for African Americans versus 76.4 years for Whites) (Kim Bramlett, Wright, & Poon, 1998; Pinquart & Sorensen, 2005). Minority caregivers are also more likely to be younger, si ngle, an adult child, a cousin, a grandchild, provide l onger care time in the home, and be female (Pinquart & Sorensen, 2005; Neary & Mahoney, 2005). When dealing with those in the caregive r role, Hispanics a nd African Americans demonstrate different health communication issu es and barriers than Caucasians. Hispanics experience language barriers with those who are formal health care providers, lack of information about the illness/disease, and i ssues involving accultura tion. Proficiency of caregivers in using the English la nguage was significant if the el derly disabled person receiving care attempted to use formal health care se rvices (Wright, 1997; Calderon-Rosado, Morrill, Chang, & Tennstedt, 2002; Neary & Mahoney, 2005). Cultural socialization in African American communities helps them better deal with stressors in the caregiver role, as well as extended e xposure to caregiving as children, teenagers, and eventually as adults. This socialization is more prevalent in the African American and Hispanic/Latino communities, thereby presenting a higher propensity for family involvement.

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44 This socialization is less prev alent in Caucasian households because of different types of socialization and smaller family units (i.e., due to lower birth rates a nd higher divorce rates) (Dilworth-Anderson, et al., 2004; Pin quart & Sorensen, 2005; Ayalong, 2004). Based on a study of Latina and Caucasian care givers of individuals with Alzheimers Disease, researchers found that Latina caregivers tend to be younger, less educated, had lower incomes, and provided more care on a daily basis than their Caucasian counterparts (Coon, Rubert, Solano, Mausbach, Kraemer, Arguelles, Haley, Thompson, Gallagher-Thompson, 2004). Using the Resources for Enhancing Alzheimers Caregiver Health (REACH program), Latina caregivers reported having more positive experien ces and participating in more prayer and religious activity than their Caucasian counterparts (p<.001), even though the care recipient seemed to have more behavior problems and had more impairments. In a study using REACH data with a similar Latino population and length in the caregiver role, ethnicity was assessed as a possible factor to determine time to institutionalization (Mausbach et al., 2004). Latina wo men have more days of survival in the caregiver role than Caucasians, from time of diagnosis to instituti onalization, but Latinas wh o viewed caregiving as less positive did not feel as c onfident in their role compared to other Latina women who felt more confident as caregivers (P= .044) (Mausbach et al., 2004, p. 1080). How an individual is socialized to view car egiving represents anot her important factor when studying race and ethnicity among caregiver s (Roff et al., 2004). Research on the resources for REACH program assessed differences in positive attitudes in the caregiver role and what contributed to these positive experiences among African Americans and Caucasians. As predicted, African American caregivers reported more positive aspects as caregivers (p<.001),

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45 were lower in SES, reported lower anxiety le vels, and tended to be more religious than Caucasians (Roff et al., p. P188). Studying cultural values and be liefs among informal caregiver s, researchers found that no differences existed between African Americans and Whites in gender a nd education (DilworthAnderson, Brummett, Goodwin, Williams, Willia ms, & Siegler, 2005). However, African Americans were more likely to adhere more st rongly to cultural reasons for providing care, and females in this group were more likely to adhere to providing care (Dilworth-Anderson, et al., 2005, p. S259). The researchers concluded that differences in cultural sociali zation within the African American community created strong beliefs, traditional values, and attitudes about caring for dependent family members. They al so found that African Americans with a higher level of education were le ss likely to adhere to these traditional values. This finding suggests education and income may have a significant impact on caregivers in several ways. First, those with higher levels of education ha ve better jobs with health insura nce benefits and therefore have better access to health care benefits. Second, Af rican Americans who have better jobs may also have the means to provide in-home care or assi sted living care for older family members. African American caregivers were less likely than Whites to place the older adult in a nursing home or similar facility, regardless of illness, although both groups experienced similar stressors in their caregiving roles (Stevens Owen, Roth, Clay, Bart olucci, & Haley, 2004; Wolinsky, Callahan, Fitzgerald, & Johnson, 1992; Gaugler, Leach, Clay, & Newcomer, 2004). For those African American individuals who we re placed in a nursing home with Alzheimers Disease or some form of demen tia, contributing factors included being a caregiver of males, higher caregiver burden, and care re ceivers who were more cogniti vely impaired (Gaugler et al., 2004).

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46 African American careg ivers reported less stress in cari ng for an elder with dementia, although their White counterparts had higher family income and tended to be older (M=72.2 for Whites vs. M=55.2 for African Americans; P < .0001) (Stevens et al., 2004). Caregivers with higher income and who were older tended to pla ce chronically ill family members in a nursing home at a higher rate. Therefore, literature on African American and Hispanic caregivers suggests it is important to evalua te and assess how they cope with stress effectively in specific situations. African Americans recorded significantly lower mental health rating scores than Caucasians, and Caucasians were more likely to perceive their overall he alth as good or excellent compared to their African American counterpa rts (Kim, et al., 1998). When controlling for education level, this difference decreased dramat ically for both groups. Age, gender, education, income, physical health status, and self-perceived level of health were significant predictors of health behavior. African Americans particip ated less in regular phys ical activity, but the researchers operationally defined physical activity as playing te nnis, jogging, and hiking; not typical exercises for many ethnically diverse groups. Age of African American caregivers also aff ected the degree of depression, with younger caregivers showing higher rates of depressive symptoms (W right, Hickey, Buckwalter, Hendrix, & Kelechi, 1999). However, while caregivers us ually decrease their daily exercise after assuming the caregiver role (Wright, 1997), it is important to present mi nority caregivers with exercise regimens pertinent to their culture and lifestyle. Wallsten (2000) compared gender, race, and in come as factors in caregiving based on a cross-sectional study. The averag e time spent caregiving was at 5.29 years; with mean income for African American caregivers at $9,226 annually, and $16,111 for Caucasian caregivers

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47 annually. For health symptoms reported by caregi vers, Caucasian females recorded the highest rate of health symptoms compared to African American females. African Americans and Caucasians reported equal numbers of indi viduals in their soci al support circles. In a qualitative study of 28 African American men and women diagnosed with prostate and breast cancer, respectively, all individuals had pa rticipated in reciprocal giving and receiving relationships (Hamilton & Sandelowski, 2003, p. 656). Social support circles among African American families are considered kinship sy stems. The common ground for most African American individuals seemed to be seeking info rmation and consolation through people in their church or immediate family community, and thro ugh religion in general. Most individuals participated in reciprocal rela tionships throughout their illness, increased their self-esteem and overall positive attitudes in deal ing with their illness (p. 670). Few studies have examined Asian caregive rs. Researchers conducting a multiethnic study of family caregivers (African American, As ian Americans, Latino, and Anglo EuropeanAmerican) studied how ethnically diverse populations view dementia (i.e., in medical versus non-medical terms) (Hinton, Franz, Yeo, & Le vkoff, 2005). The majority of caregivers described dementia to care re ceivers in both biomedical and folk models. Although most caregivers in this study used both models to de scribe dementia, a signi ficant association was found between ethnicity, education, and model type. Implications of this study for a group of ethnically diverse caregivers in clude having formal care provid ers learn more about family dynamics and traditions in communicating with care receivers. Folk model explanations among caregivers dealing with care of those with dementia could hinder and influence treatment and medical decisions.

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48 Picots caregiver rewards scale (PCRS) assess ed cross-cultural Chin ese adult caregivers, who were born abroad but were currently living in the U.S. (Hseueh, Phillips, Cheng, & Pico, 2005). Caregivers in this study ha d lived in the U.S. for a mean of 19 years (range from two to 58 years). Most caregivers were women (70% ) and had annual incomes that ranged from $40,000 to $149,000 (84%). Rewards in the caregiver ro le were the primary focus of the scale. Results showed that Chinese caregivers in the st udy felt that their role as caregivers achieved personal growth, fulfilling payback and close bonds with family members (Hseueh et al., 2005, p. 768). These findings are fairly consistent with similar studies among Chinese families and their caregivers. Formal and non-formal (i.e., trad itional) long-term health care preferences were assessed among a population of older Korean Americans who had sustained a hip fracture or suffered a stroke (Min, 2005). Care recipien ts in this study were older than 65 years. Factors used to assess health care preference included traditiona l family values, degree of acculturation, and level of informal support that incorporated Activities of Daily Living and Instrumental Activities of Daily Living (p. 373). Those who we re married and had sustai ned a hip fracture, or who had previously sustained a hip fracture, we re more likely to choose a mixed health care format (i.e., combination of formal and non-formal health care). For those who reported having strong traditional values and had suffered a st roke, individuals were not as likely (15%) to choose a mixed health care format. However, older individuals who ha d experienced a stroke were more likely to choose the all-formal hea lth care option. Overall, individuals who were female, reported being in better health, and who had higher levels of education were more likely to choose a mixed health care format (Min, 2005).

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49 In a qualitative study of Thai caregivers living in the U.S., several important aspects of caregiving emerged (Limpanichkul & Magilvy, 2004). Caregivers had a considerable degree of family support, which helped with emotional an d financial well being. Social support from neighbors and friends also was prevalent among this group of caregivers. Coping strategies included strong religious beliefs (Buddhism) and participation in activities such as praying. Finally, a strong partnershi p with the care receiver was essent ial, and included using humor and understanding the care recipient (p. 22). Two studies based in the Un ited Kingdom assessed needs of informal caregivers among a South Asian population caring for those with dementia (Adamson & Donovan, 2005), and a South Asian and African/Caribbe an population caring for those w ith a variety of disabilities (Katbamna, Ahmad, Bhakta, Baker, & Parker, 2004). One study used qualitative methods (Adamson & Donovan, 2005) and the other study used a combination of qualitative and quantitative methods. Both studies confirmed it is expected that adult sons and daughters, including daughters-in-law, will car e for elderly family members. When care recipients had a variety of disabi lities (Katbamna et al., 2005), husbands of female caregivers were rarely re sponsible for intimate forms of care (p. 400), but did assist in tasks such as taking children to school or c linical appointments. Many female caregivers of children with disabilities stated that their husbands provided the only source of emotional support they needed for continuation of care. Most caregivers lived in an extended household environment, and many adults relied on younger child ren to interpret questions and concerns to formal health care providers because they spoke little or no English. Many caregivers reported that caregiving skills were part of their lif estyle since childhood (Adamson & Donovan, 2005), and often described thei r current caregiving role as being natural

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50 (p. 39). Again, lack of support from family me mbers influenced the degree of satisfaction and stress among caregivers. Caregiver responsibil ities were mandated according to what the study states as hierarchy of caring re sponsibilities (p. 45). Female married caregivers viewed their roles as an extension of their other marital roles. In summary, it is important to assess multiple factors involved in caregiving. These factors include current health status of th e caregiver, current health status of the care recipient, age of the caregiver, age of the care recipient, race/ethnicity of the caregiver, and type of disease or illness of the care recipient. The rese arch shows minority caregivers (i .e., Latino/Hispanic and African Americans) have lower SES, have less quality access to health car e, and care for individuals who present more severe symptoms, but they tend to in stitutionalize less, feel more positive and feel less depressed than their Caucasian counterparts. In the African American culture, caring for a family member is considered normative and th erefore more engrained than in the Caucasian culture. For Latinos, the concept of la familia, which basically places family above the self, is a deterrent to institutionalizing family member s sooner and motivation for continued care. For all cultural groups (i.e., African Americans, Latino, and Asians), it is important for formal care providers to acknowledge how individual groups and families frame the disease (biomedical versus folk models), which could potentiall y influence the well-being and care for the care recipient. Temperament Type Temperament, personality, and character are not only three distinct part s of an individuals persona, but they work together in a manner that predisposes individuals to certain attitudes and actions. According to research in this area, temperament is desc ribed as a pre-disposing factor, and as Keirsey states (1998), our brain is a sort of computer with temperament for its hardware, and character as its software (p. 20).

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51 In general, the basic characteristics of personality include the manner in which an individual uses words and ideas (abstract vers us concrete), and how we accomplish tasks (i.e., tools we use), which can be either cooperative versus utilitarian (Kei rsey, 1998). Individuals who are cooperative in nature essentially follo w the approved guidelines and procedures, while those following a more utilitarian path will us e any method that can promise success with minimum cost and effort (Keirsey, 1998, p. 28). The concept of distinguishing temperament dates back to ancient Greek and Roman times to Hippocrates (370 BC), Plato ( 340 BC), Aristotle (325 BC), and Galen (190 A.D.). Galen, a Roman physician, believed that the balance on our bodi es is dependent in th e balance of our four bodily fluids: Sanguine (lively, upbeat), Choleric (excitable, quick-tempered), Melancholic (worrisome, sad), and Phlegmatic (slow-moving, de jected). Plato categorized people similarly. Early philosophers focused on individual predispo sitions toward certain behaviors (Keirsey, 1998, p. 23). These four bodily fluids as desc ribed by Galen, and the four attributes an individual can contribute to th e social order as described by Plato, are described by the four Keirsey temperament types (Keirsey, 1998). Other researchers, such as Pavlov and Freud, in the field of personality and character, which is closely related to the field of psychiat ry, focused more on stimuli and basic instincts of humans (Biological Aspects of Personality: PSY 230 Theories of Personality, 2000, para. 6; Keirsey, 1998, p. 20). In the 1920s, Carl Jung be gan to formulate the basis for the modern Temperament Theory. Jung stated that individua ls have basic archetype s, which are derived from four psychological functions thinking, feeling, sensation, and intuition (Jung, 1926). Temperament, which is consistent over time, re lates to why people behave a certain way and the

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52 motivations for their behavior (Keirsey, 1998, p. 26; Understanding the Four Temperament Patterns, 2000, para. 1). During the 1940s, Katherine Cook Briggs and her daughter Isabel Br iggs Myers created the Myers-Briggs Type Indicator, which extende d Jungs theories and categorized different dimensions of temperament into discrete functi ons. The MBTI was specifically designed to identify 16 patterns that proj ected action and attitude (Kei rsey, 1998, p. 3). The receiving functions include Sensing (S usi ng the five senses to focus on r ealism, details, and practicality) and Intuition (N using insight beyond senses, creativity, and being future-oriented). Judgment functions involve evaluation of circumstances a nd include Thinking (T evaluating situations through a cause and effect process and a more impersonal and objective ou tlook) and Feeling (F focused more on personal values, humanism, ha rmony). How individuals deal with energy is described as either Extrovert (E energy goi ng into external objects in the environment, communicating easily, open to ne w experiences, and sociable) or Introvert (I energy comes from environment, more solitary and private, an d thinking before expressing feelings) (Calahan, 1996; Daley, 2000). Myers and Briggs also examined orienta tion to the outside world through the characteristics of Judging (J preferring more or ganized and decisive activities, close-ended) and Perceiving (P information gathering contin uing as long as possible, more spontaneous, open to new ideas and experiences ) (Calahan, 1996; Daley, 2000). Myers and Briggs felt that the perceiving or judging preferen ce revealed a persons attitude or orientation to life and aptly determined how individuals dealt with their exte rnal environment. Thus, temperament type (a predisposing factor) represents an important indicator of how caregivers will define and respond to their caregiving role. For example, a perceivi ng caregiver, identified as an Idealist, may

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53 often look for meaning and significance in making a decision in a given situation. Idealists more likely will value the opinion of family members. During the transition from childhood to adol escence, and into adulthood, individuals display what Jung called dominant and auxiliar y characteristics (Daley, 2000, p. 21). With auxiliary characteristics or func tions, an individual de velops a balance betw een the internal and external worlds. This transition is important in caregiving because, for instance, a caregiver who is considered an Introverted temperament t ype may use both self-knowledge and knowledge from the Internet to make the best medical and quality-of-life decisions for the care receiver. Psychologist David Keirsey (K eirsey & Bates, 1984; Ke irsey, 1998) developed an instrument to determine individual temperament based on the work of Myers and Briggs. Each temperament has characteristics of the 16 patter ns conceptualized by Myers and Briggs. The Keirsey Temperament Sorter was created base d on the belief that temperament can be manifested from how an individual uses la nguage and tools (i.e., computers), and that temperament is defined by differentiation not integration as Myers and Briggs proposed (Calahan, 1996). Keirseys temperament types include Artisans (SP), Guardians (SJ), Idealists (NF), and Rationals (NT) (Daley, 2000). McCarley and Carskaden (1987) compared the Keirsey Temperament Sorter and the Myers-Briggs Type Indicator for va lidity and found both instruments comparable in construct validity (i.e ., some types were low and some types were high). The four Artisan types are ESTP (Promoter ), ISTP (Crafter), ESFP (Performer), and ISFP (Composer) (Keirsey, 1998, p. 11). The four Guardian types are ESTJ (Supervisor), ISTJ (Inspector), ESFJ ( Pr ovider), and ISFJ (Pr otector) (Keirsey, 1998, p.

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54 11). The four Idealist types are ENFJ (Teac her), INFJ (Counselor), ENFP (Champion), and INFP (Healer) (Keirsey, 1998, p. 12). The four Rational types are ENTJ (Fieldmarshal), INTJ (Mastermind), ENTP ( Inventor), and INTP ( Architect) (Keirsey, 1998, p. 12). Artisans are talented at using tools such as language and computer s, as well as being skilled and creative. In decision-making skills, Ar tisans tend to be the most impulsive of the four types and trust their impulses wit hout reserve (Keirs ey, 1998, p. 56). Guardians are more rule-oriented, use more r easoning skills and are described as stable, secure, and following protocol. The best way to describe Guardians is as administrators; their first instinct is to take char ge and tell others what to do (K eirsey, 1998, p. 84). Guardians feel responsible for the morality of those around them. Rationals are more analytical, they value ex pertise and seek progress and are most likely to think more abstractly. The four Rational role s tend to be more strategic in nature, tend to remain calm, tend to seek knowledge, and most often trust their ow n reasoning. The most famous Rational was Albert Einstein (Keirsey, 1998, p. 161). Idealists focus on cooperative interactions th at deal with moral and ethical issues. Idealists are more diplomatic in nature, and are more adept at interpersonal communication skills (Understanding the Four Temperaments, 2000, para. 9) Idealists are the most abstract of the four temperaments, and tend to be inductive in th eir thought process, whic h signifies that they will take a few particulars to sweeping genera lities (Keirsey, 1998, p. 121). Because Idealists usually process in the abstract, their thought and speech patterns tend to be interpretive, which means that certain comments are how one thi ng is really something else (Keirsey, 1998, p. 121).

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55 Individuals display a predispos ition or affinity for certain functions (Understanding the Four Temperaments, 2000, para. 1). As indivi duals progress through th e life cycle, these predispositions become more evident in decision making and skill development. Refinement of ones preferences into adulthood can assist in he lping make decisions about professions, family, health care, and children. When individuals move into the caregiver ro le, they experience diffe rent stressors that cause a state of arousal, thereby setting the in dividual into a coping mode regarding that stressor (Morris, 2000). Temperament, an indi viduals propensity to act in a certain manner, when combined with confidence and determination, may predict how a caregiver will cope with, and respond to, stressors. Temperament is impor tant among caregivers as a function of what motivates and drives decisions, in teractions with others, and ac tions. In the caregiver role, decisions and actions regarding the care receiver a nd the caregiver, him or herself will affect the health and quality of life for both individuals and those in the immediate fa mily. Therefore, it is important to determine the temperament of the car egiver to help assist in the facilitation of information flow, awareness, and communication between formal (medical staff) and informal caregivers. Morris (2000) examined temperament types among students selected for dental school using the Keirsey Temperament Sorter II (N=299 ). Extroversion (84.3% ) exceeded Introversion (15.7%) among dental school applicants. No si gnificant proportional differences existed between male and female students. Most (9 4%) preferred judging ove r perceiving (6.4%). Feelings were preferred more by females than by males in the mental function category, and the comparison showed statistical significance. Findings for dental stude nts were similar to results from studies involving me dical students. Although this st udy did not focus on the role of

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56 caregivers, it depicts the percentage of males a nd females who have different temperament traits more women have the feeling trait. In addition, one rese arch study suggested that some temperament types are more likely to engage in unhealthy behaviors and take more risks (Daley, 2000). In a study that assessed caregiver character istics inherent in temperament types, researchers showed that if caregivers displayed a higher propensity for de pression during the first year of caregiving, there was a higher rate of pa tient admission to a nursing home. The number of activities of daily liv ing provided by the caregiver, the ca regivers age, and the caregivers health were used as indicating factors in th e study (Yaffe, Fox, Newcomer, Sands, Lindquist, Dane, & Covinsky, 2002). Hadley (2003) combined Banduras cons truct of self-efficacy and the Keirsey Temperament Indicator II, and applied both of th ese concepts to determine if they related directly to job performance. The Keirsey Temp erament Indicator II and the Myers-Briggs Type Indicator usually are used to assess job perfor mance standards in the workplace or in schools. In summary, temperament is a predisposing f actor that changes litt le throughout the lifetime, although certain aspects, such as deci sion-making skills, develop during adolescence and adulthood. Temperament is important in the car egiving role because it often defines ones natural preferences (i.e., formal ve rsus traditional health care ). It is important for those in formal health care fields to understand how diffe rent temperaments process and communicate. Temperament types are found in all races, cultures and ethnicities, therefore, this aspect can bring insight into how health educators, doctors, and other health care pr oviders get their point across for optimum benefits and quality of life among caregiver and care receiver.

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57 Self-Efficacy and Outcome Expectancies Self-Efficacy, conceptualized by Albert Bandura, is a construct of the Social Cognitive Theory which extends to the Social Learning Theory and helps to predict and understand behavior (Glanz, et al, 2002) Originally, Bandura applied Social Cognitive Theory to childrens behavior in a laboratory setting. According to Bandura (1986), se lf-efficacy influences how we make choices, the motivation or effort put fort h toward an action, how we accept or reject life changes, and how we feel about our choices, actions, and changes. Social relationships enhance feelings of self-worth, self-esteem, and a sens e of well-being when individuals feel valued by meaningful others (Miller, Townsend, Ca rpenter, Montgomery, Stull, & Young, 2001). Self-efficacy involves ones cap abilities to organize and ex ecute the sources of action required to manage prospectiv e situations (Bandura, 1986, p 5). Self-efficacy develops over time and is influenced by ones failures and ac hievements, influenced by significant others, by observing others, and by a persons emotional stat e while performing a behavior or taking an action. An important determinant of how self -efficacy develops involves self-reflection, defined as the ability of individuals to analyz e their experiences, think about their own thought processes, and alter their thinking accordingly (Brown, 1997, para. 21). Four factors influence the development of se lf-efficacy: mastery experiences (balance of successes and failures in tasks), vicarious experiences (watchin g others similar to oneself perform and succeed in various behaviors), soci al persuasion (verbal persuasion about ones capabilities), and positive mood enhancement a nd stress reduction (inc reasing efficacy at reducing stressors in life-changi ng situations) (Bandura, 1994). Self-Efficacy and Effect on Health and Disease Researchers examined enhancement of s upport for health behavior change among postmenopausal women younger than 75, diagnosed with Type II diabetes, and who were at risk

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58 for heart disease (Toobert, Stry cker, Glasgow, Barrera, and Bagda de, 2002). Participants were randomly assigned to three groups: usual care (N=123), lay-led peer group (N=78), and computer-based support involving community resources (N=78). Measures included behavior changes (diet and eating ha bits), physiological cha nges (carotid artery in timal-media thickness), psychosocial changes (quality of life and depression), and process measures (perceived social support, perceived stress, obstacles barriers) (p. 578). Participants attended retreats to assist them in preparing meals and eating healthier, to learn stress management techniques such as yoga, and to study exercise guidelines for thei r lifestyles. Support group leaders scheduled interventions during the follow-up period. Resu lts indicated that those who had a follow-up intervention tended to respond more positively to the information and resources provided to them. Conn, Burks, Pomeroy, Ulbrich, and Cochron (2003) studied older women (N=203) and the health benefits of exercise designed to reduce their risk s for cardiovascular disease. Individuals with high self-efficacy maintained hi gher exercise expectations and continued their routines. Self-efficacy emerged as a strong indi cator for primary care intervention. Exercise self-efficacy expectations had a direct significant effect on exercise behavior and on processes of change (p < .0001). The Arthritis, Diet, and Activity Promoti on Trial (ADAPT) tested self-efficacy for behavior change in lifestyles of overweight, non-active men a nd women with osteoarthritis (Miller, Rejeski, Williamson, Morgan, Sevick, Loes er, Ettinger, & Messier, 2003). This study was designed to test the effect of diet and exer cise on self-reported physic al function (Miller et al., p. 473). Women were randomized into four groups healthy controls, dietary weight loss with no structured exercise, structured exercise with no dietary loss, and exercise and weight

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59 loss. The study included an 18-month follow-up evaluation. In addition, physical functioning and four different BMI levels (p=0.0062) were di rectly related to women who were in different BMI categories as described above. Therefore, how well an individual co uld perform (physical functioning) was directly related to how c onfident he or she felt about themselves. Northouse, Mood, Kershaw, Schafenacker, Me llon, Walker, Galvin, and Decker (2002) found that quality of life among wo men with recurring breast cancer (N=189) related directly to levels of self-efficacy, social s upport systems, and cohesiveness or strength of the family unit, and support with the patient. Women with fewer current concerns gave le ss negative appraisals of the illness and caregiving and subsequently report ed a higher quality of life. Self-efficacy had a direct and positive effect on patients mental health. Death of a spouse greatly affects the widowed i ndividuals self-esteem, quality of life, and other self-efficacy issues, especia lly after an extended period of ca regiving (Fry, 2001). In one study, widows showed lower self-esteem, while e ducation and income predicted widows quality of life. Widows who reported great er levels of quality of life al so reported greater levels of perceived self-efficacy in the categories of spir ituality, interpersonal relationships, and social support (Fry, 2001). Similarly, other research indicated that careg ivers who showed no significant strain in the pre-bereavement period we re more likely to experi ence a higher level of depression post-bereavement (P=0.002), and Afri can Americans recorded significantly lower depression symptom scores than Whites in the pr eand post-bereavement period (Schultz, et al., 2001, p. 3127). Self-Efficacy Among Health Professionals The relationship between the informal caregive r and the care receiv er is important to understanding the role of the formal caregiver. Although expos ure of the care receiver and caregiver to formal caregivers is minimal co mpared to family and friends, health care

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60 professionals should understand the impact they can have on basic daily functioning, overall mental health, and self-efficacy of the caregiver and care receiver. Pinto, Friedman, Marcus, Kelley, Tennstedt and Gillman (2002) examined telephonebased interventions by formal caregivers to promote physical activity among health professionals. Sedentary adu lts (72% women, 45% African Am erican) were placed in two groups, both requiring telephone-based interventi ons. One group received a healthy eating promotion and the other group received a physi cal activity promotion. Both groups were assessed at baseline, at thr ee months, and at six months after the beginning of phone interventions. Self-efficacy with physical activity represented the degree of confidence one feels in being a physically active individual. Mode rate physical activity for energy expenditure at three months showed the only statistically signif icant interaction (p=0.02) with self-efficacy. Follow up by formal health care providers and de gree of concern were part of the intervention. Health professionals can play an important role in reducing effect s of depression among cancer patients. Health professionals can in crease their own self-efficacy in the formal caregiving role by understanding factors involved with patient diagnosis, such as their own supportive role, attitudes, and beliefs about comm unicating with cancer pati ents (Parle, Maguire, & Heaven, 1997). After completing a skills workshop on dealing w ith cancer patients emotional well-being, health care professionals rated the likely outcome of a discussion of psychological concerns for a terminally ill pati ent as more positive (P < .001) (Parle, et al., 1997, p. 239). Although health professionals may feel confidence or high self-efficacy in dealing with patient emotions, they do not f eel as confident in managing these feelings. Self-Efficacy and Caregivers Gottlieb and Rooney (2004) studied coping a nd self-efficacy regarding mental health among caregivers for persons with dementia (N=141). Optimism and relational self-efficacy

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61 (i.e., degree of emotional involvement with the care receiver) predicted coping effectiveness. Caregiver exposure to dementia symptoms, bei ng less optimistic, and holding weaker beliefs in ones coping effectiveness were significant predic tors of a negative health effect (p < 0.01). In addition, coping had a major impact on the caregive rs mental health even after controlling for outcome expectancies. In a study on self-efficacy of family caregiv ers who were helping cancer patients manage end-of-life pain (Keefe, Ahles, Porter, Sutt on, McBride, Pope, McKinstry, Furstenberg, Dalton, & Baucom, 2003), caregiver self-efficacy was signif icant when correlated with caregiver strain, positive mood, negative mood, and the patients phys ical well being. In situations where caregivers reported higher sel f-efficacy, care receiver reported having more energy, feeling less ill, and spending less time in bed. Similarly, Tang, and Chen (2002) examined hea lth promotion behaviors of Chinese family caregivers for stroke patients. Regression analysis revealed the variable of caregivers health status as the only positive predic tor of caregiver self-efficacy. Satisfaction with social support was the strongest predictor of caregiver health promotion behavior (p. 331). Gitlin, Corcoran, Winter, Boyce, and Hauck (2001) studied the effects of a home environmental intervention on self-efficacy and up set in caregivers and the daily function of dementia patients (N=171). Caregivers were ra ndomly assigned to a treatment group in which they were exposed to a home environmental inte rvention. Caregivers assigned to a control group were exposed to a usual care setting and were ed ucated on how to adjust their environment to simplify caregiver workloads and reduce stress. Most caregivers (5 9%) were daughters or daughters-in-law. In addition, 126 (74%) were White, and 43 (25%) were African American. Among the respondents, the mean number of months spent in the caregiver role was 45 months.

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62 The largest interaction occurred for caregiver be havior self-efficacy and behavior upset (p=.04). In this study, caregivers reporte d managing Instrumental Activiti es of Daily Living (IADL) and Activities of Daily Living (ADL) on a moderate self -efficacy level. Minority participants in the treatment group showed greater improvement in IADL and ADL self-efficacy. In a similar study using skills tr aining interventions for female caregivers of relatives with dementia (N=169), those in anger and depres sion management groups showed significant reductions in levels of anger, and depressi on decreased significantly, while self-efficacy increased between the first and second data collections (T1, T2, respectively) (Coon, Thompson, Steffen, Sorocco, & Gallagher-Thompson, 2003). Fortinsky, Kercher, and Burant (2002) compar ed measurement and correlates of family caregiver self-efficacy for managing dementia (N =197). They sought to develop a strategy to measure family caregiver self-efficacy for ma naging dementia, incorporating domains of symptom management and use of community suppor t services. More than 80% of caregivers were female, and about 20% classified themse lves as African American. Caregivers who reported a higher level of dementia symptommanagement self-efficacy also reported fewer depressive symptoms. This study suggests that self-efficacy represents a coping mechanism in response to the stress of caring for a relative with dementia. Expectancies (or incentives) differ from expectations, both Social Cognitive Theory constructs because they reflect the value an i ndividual places on a particular outcome (Glanz et al., 2002, p. 172-173). In the caregiver role, expectan cies influence the beha vior of individuals in determining choices for themselves and for th e care receivers for the most positive outcome. For example, if the care receiver has a terminal illness, the care giver will make decisions that

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63 seem best to optimize quality of life for that individual regardless of his or her own personal health (Wright, 1997). Summary Chapter 2 presented a review of literature related to various aspects of informal caregiving including health, stress, and ethni city. The review also addressed the importance of the role of self-efficacy, and how temperament can act as an important determinant of decision-making. Temperament is considered to be fairly stable through the life span, with each individual predisposed to certain characterist ics within that temperament. Although no known literature to date has a ssessed temperament using the Keirsey Temperament Indicator II and self -efficacy among informal caregiv ers, studies using the MyersBriggs Type Indicator and self-e fficacy primarily focused on issues such as self-assessment of schizophrenics, first-time mothers, work place ri sks, and career decisions. Studies reviewed in this chapter imply that certain temperament types interact with self-efficacy to influence risk taking in personal care and deci sions, including health care decisions, interactions in a group setting, degree and dynamics of so cial support systems, and relationship dynamics with the care recipient. The review included factors that influence indi viduals serving as informal caregivers such as cost and personal risks, resear ch that defines and describes type s of temperament, and research that examines self-efficacy in re lation to disease as a pplied to formal and informal caregivers. Though temperament and self-efficacy can influe nce how individuals re spond to the caregiver role, the literature review produced few studies th at directly examined the relationships existing among temperament and self-efficacy among informal caregivers. In this study, self-efficacy combined with expectancies, is pr esented as an enabling factor.

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64 Because of the intense nature and diversit y of tasks involved in caregiving, and the growing population of caregivers in the U.S ., a better understanding of how temperament influences self-efficacy regarding attitudes and beliefs about caregiving, can present health care providers and researchers in the field a better und erstanding of how to assist caregivers. Chapter 3 describes the research design, instruments, and process used to gather information about informal caregivers Table 2-1. Incremental caregiving hours and incremental cost of informal care attributable to dementia Incremental Cost per Year Dementia Incremental Hours Using Low-range Es timated Using Mid-range Estimated Using High Severity Estimated Cost of Informal Care Cost of Informal Care Cost of Per Week Informal Care Normal Cognition Reference Reference Reference Reference Mild dementia 8.5 $2,610 $3,630 $4,780 Moderate dementia 17.4 $5,340 $7,420 $9,770 Severe dementia 41.5 $12,730 $17,700 $23,310 Langa, et al., 2001, pg. 775 Table 2-2. Adjusted weekly hours and y early costs of informal caregiving Hrs. per 95% CI Cost per Week (hours) Year 95% CI No history of cancer 6.9 6.5-7.2 $3,000 $2,800-$3,100 History of cancer, no recent treatment 6.8 6.4-7.1 $2,900 $2,700-$3,000 History of cancer, recent treatment 10.0+ 9.6-10.5 $4,200+ $4,100-$4,500 Hayman et al., 2001, p. 3222; + denotes P< .05

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65 CHAPTER 3 METHODS This study examined relationships that exis t between different temperament types and perceived self-efficacy among individuals serving in an informal caregiver role. The effects of self-efficacy on several caregiver characteristics we re also examined. This chapter describes the methodology used in this study, which includes the research design, re search variables, instruments, the pilot study, and the final study. Research Design The study used a cross-sectiona l survey research design to explore possible relationships between temperament and self-efficacy among inform al caregivers. With this design, a standard protocol can be administered to a group of participants using standardized procedures that require a reasonable amount of time. Likewise, data can be analyzed uniformly and objectively (McDermott & Sarvela, 1999). Participants includ ed individuals 18 years or older who provided part-time or full-time caregiver care for at least one individual 21 years or older. Participants also participated in support gr oups, health forums, and health fa irs. Two models provided a theoretical framewor k for this study. Social Cognitive Theory (SCT), originally called Social Learning Theory was conceptualized by Bandura in the 1960s (Bandur a, 1986). Self-efficacy, the most often used construct in the SCT helps determine an individuals confid ence level in performing an action or series of actions. Combined with outcome exp ectancies (i.e., will others also perceive my action as beneficial), self-effi cacy can determine duration of performing an action, such as serving in a caregiver role. In studies on understanding the careg iver role, self-efficacy helps determine caregiver reactions to stressors and ot her psychosocial factors. Self-efficacy also plays a role in overcoming environmental barriers in performing the behavior or in not starting a

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66 negative behavior (i.e., cigarette smoking). This study used the constructs of self-efficacy and outcome expectancies from SCT to examine how temperament type interacts with self-efficacy in the caregiver role (Wilson, Friend, Teasley, Gree n, Reaves, & Sica, 2002; Glanz et al., 2002, p. 173-174). Temperament Theory defined by Carl Jung, posits th at seemingly random behavior actually reflects ones natural pr eferences, and that certain peopl e are predisposed to display different behaviors (temperament types). In one study of employee motivation (Burke, 200 4), the factors of choice, competence, and meaningfulness represented the primary intrinsic motivators for the Artisan, Rational, and Idealist, respectively. Choice, competence, a nd meaningfulness scales were significantly different among three temperaments Artisan s, Rationals, and Idealists. The Keirsey Temperament Indicator II, as used in this study, applied Jungs theory to identify four temperament types: Rationals, Idealists, Artisa ns, and Guardians (Temperament: Temperament versus character, 1998, para. 1). No previ ous study combining the Keirsey Temperament Indicator II with a self-efficacy scale among informal caregivers was found in the literature. Research Variables The study included one explanatory (independent ) variable (temperament type) from the Keirsey Temperament Indicator II, with four re sponse options: Artisans Idealists, Rationals, Guardians. The Keirsey Temperament Indicator II has 70 qu estions and is similar to the MyersBriggs Temperament Indicator in that it uses a series of forced-choice responses. Each of the 70 questions for the Keirsey Temperament Indicat or II did not reflect any of the other dichotomies (Daley, 2000). For example, the 10 specific questions for the dyad characteristic of E/I were grouped and did not re flect on any of the questions fo r the dyad characteristics of S/N, T/F, or J/P. Each question for this inst rument has two response options: a or b. The 16

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67 temperament types, as originally defined by Myer s and Briggs, are combined into four discreet temperaments defined by Keirsey. These four te mperaments were discussed in Chapter 2. The Caregiving Self-Efficacy Scale was used as a depe ndent (outcome) variable for research question 1, and as an explanatory (cont inuous) variable in research questions 2 through 5. The study also included several outcome (depen dent) variables: (1 ) the Caregiving SelfEfficacy Scale, a continuous variable, included scale options ranging from 0 to 100 displayed in increments of 10, but respondents were free to answ er with any number in the scale range that accurately indicated thei r degree of confidence; (2) intensity of care a categorical variable, asked how difficult or how demanding is it for you to care fo r this person (not diffi cult at all, a little difficult, difficult, very difficult, and ex tremely difficult; (3) total duration of care a categorical variable, asked how long have you provided care for this person (6 months or less, 6-12 months, 1 year, 2 years, 3 years, 4 years, 5 years or more); (4) daily duration of care a categorical variable, asked on average, how mu ch time do you spend each day caring for this person (1 hour or less, 1-3 hours, 4-6 hours, 7-9 hours, 10-12 hours, 12 hours or more); and (5) relationship to the care receiver a categorical variable, asked your relationship to the person you care for (my parent, my spouse, my child, a grandparent, an in-law, my friend, my partner, other). To provide consistency in data analysis for some of the variables listed above, several categories were collapsed. For example, for tota l duration of care, the first two categories (6 months or less and 6-12 months) were combined to produce categories at one-year intervals. Instruments Instruments for the study were selected by c onducting an extensive literature review of instruments previously used by researchers to examine self-efficacy, temperament, and other functions and aspects of caregiving. The protocol for this study included two main instruments

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68 and caregiver population demographics: (1) Ca regiving Self-Efficacy Scale (Steffen et al., 2002), (2) Keirsey Temperament Indicator II, and (3) Caregiver Profile Information. Caregiving Self-Efficacy Scale After extensively reviewing the literature, th is scale was deemed most appropriate to measure self-efficacy among caregivers. The instrume nt was created original ly for caregivers of dementia patients. The scale was designed specif ically to measure perceived efficacy among this population of caregivers. The 15-item scale in cludes three sub-scales : Obtaining Respite Care, Controlling Upsetting Thoughts About Caregiving, and Res ponding to Disruptive Behaviors (Appendix D). Res pondents rated their perceived c onfidence on a 0 to 100 scale, with 0 as cannot do at all and 100 as certain can do. Ba ndura, who conceptualized the construct of self-efficacy, used in both SCT and SLT in the 1970s, contributed to the development of this scale for adequate reliabil ity and validity. After reviewing the 15 items, the researcher determined that the items would pert ain to caregivers providing care to terminally ill or chronically ill individuals, including all types of dementia. The development process for the Caregiving Self-Efficacy Scale in cluded rigorous item analysis procedures. The original scale produced reliability coefficients of .80 or higher for each of the three sub-scales, and for the total scale. This total scale, whic h represented one of the dependent variables for the study, was considered a continuous variable because the scores from the three sub-scales were averaged to pr oduce an overall score from 0 to 100 (ex., 85.4). For the purpose of this study, only the total self -efficacy score was used (i.e., total number for the three sub-scales). Permission was obtained fr om the first author to use the scale and the instrument was used as originally published for the current research stud y (Steffen et al., 2002).

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69 Keirsey Temperament Indicator II The Keirsey Temperament Indicator II instrument uses four bipolar scales to sort individuals into 16 personality t ypes. These four scales includ e Extroversion/Intr oversion (E/I), Thinking/Feeling (T/F), Sensi ng/Intuition (S/N), a nd Judging/Perceiving (J/P) (Alpine Media Corporation, 2003, p. 6-7). Keirsey extended th e process to sort in dividuals into four temperament types with four dis tinct personality attributes with in each temperament, using a 70item scale (Appendix E). The four types are: Artisans (ESTP, ESFP, ISTP or ISFP), Guardians (ESTJ, ESFJ, ISTJ, or ISFJ), Idealists (ENFJ, ENFP, INFJ, or INFP), and Rationals (ENTJ, ENTP, INTJ, or INTP). The Keirsey Temperament Indicator II re sembles the Myers-Briggs Temperament Indicator in format and approach, though it is mo re limited in scope. David Keirsey modeled the Keirsey Temperament Indicator II after the work of Myers and Briggs. The Keirsey Temperament Indicator II has been applied in assessing temperament among dental and medical students, in a classroom setting, and in business settings, but not specific ally among caregivers or in any other health behavior venue known to this researcher. No peer reviewed journal publications provided adequate estimates of valid ity and reliability for the Keirsey Temperament Indicator II, so validity and reli ability of the instrument were assessed using the final population data. The print version of the Keirsey Temper ament Indicator II instrument was used for both the pilot and final study populations because that version better suit ed the nature and age of the study population. Each of the four Keirsey temperaments is considered continuous in nature. Statistical analyses were previously conducted on a wide scal e of the computerized version of the Keirsey Temperament instrument (Alpine Media Corporati on, 2003). Reliability for this instrument was previously measured using several methods including Item-Response Theory method (ranging

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70 from .33 to .76), internal consistency coefficients alpha (.80 and higher), and test-retest methods (.80 and higher). For example, using Item-Response Theory amon g males and females in each group, for the four bipolar scales, reliability estimations ranged from .81 to .83: E/I total sample=.83, males=.83, females=.83; S/N total sample=.82, males=.82, females=.82; T/F total sample=.83, males=.82, females=.82; J/P total sample=.82, males=.81, females=.82. (Alpine Media Corporation, 2003, p. 38). Using Pearsons correlation to compare the Myers-Briggs Temperament Indicator and the Keirsey Temperament Indicator II, correlation coefficients of .62 and higher for the eight temperaments, E/I, S/N, T/F, J/P were repor ted (Hadley, 2003). Another study produced Pearson correlation coefficients ranging from .68 to .84 (Ludy, 1999; Calahan, 1996). Validity measures also were conducted by th e Alpine Media Cor poration (2003) on the Keirsey Temperament Indicator II The 140 variables coincided with the 70 items. Factor analysis of the Keirsey Temperam ent Indicator II identif ied 11 factors with eigenvalues of 1.0 or greater. These 11 factors included, but limited to, Factor 1 (sensing versus intuition), Factor 2 (thinking versus feeling), Factor 3 (extroversion versus introver sion), Factor 4 (judging versus perceiver). Factors 10 and 11, wh ich were the weakest, included a variation of S/N, but also included T/F and J/P. Factor 9 was closely relate d to Factor 1, Factor 6 was closely related to Factor 2, and Factors 5, 7, and 8 we re closely related to Factor 4. The Alpine Media Corporation analysis included scores from more than 77,000 i ndividuals who completed the instrument. The analysis used SPSS and factor anal ysis statistical procedures to determine the number of unique factors or constructs that accounted for significant variance in the population data set (Alpine Media Corporation, 2003, p. 50). Of 11 factors me ntioned previously, nine showed significant

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71 loadings with some greater than .24, and with mo st greater than .35. This finding indicates that the instrument validity and relations hips among factors is fairly strong. Other studies used regression analysis to examine extroversion/introversion, self-efficacy, and other demographic study variables, including satisfaction in the field of cardiopulmonary care (Hadley, 2003; Ludy, 1999). Other than the validity study mentioned previously (Alpine Media Corporation, 2003), the lit erature review did not locate other studies that addressed validity as extensively. Caregiver Profile Information A 17-item caregiver profile was developed to obtain demographic information about caregivers such as age, gender, marital status, race/ethnicity, income level, relationship to the care receiver, and items related to the frequency, durat ion, and difficulty of the care provided. Additional profile items included age and gender of the person receiving care, and medical resources or information used before and after becoming a caregiver (Appendix F). The revised profile information used with the final study population included one additional question (#21) based on suggestions from the pilot study partic ipants (Do you care for more than one individual? If yes, how many). Some caregiv ers provide care for more than one individual, which influences multiple factors in the caregiving role. Pilot Study Preliminary Review A draft version of the study protocol was pr epared to include a script for prospective participants (Appendix G), the Caregiving Se lf-Efficacy Scale (Appendix D), the Keirsey Temperament Indicator II (Appendix E), and the Ca regiver Profile Information (Appendix F). The researcher contacted four individuals who were currently car egivers (Appendix H), and asked them each to complete the entire inst rument. These same individuals assessed the

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72 instrument for readability, comprehension, and cu ltural sensitivity. They also noted the time required to complete the entire instrument. Th e four individuals also offered comments or suggestions about the structure a nd questions of the instrument. One suggestion was to copy and enlarge the Keirsey Temperament Indicator II fo r caregivers who had difficulty reading smaller print. Acting on this suggestion, the researcher provided this option at al l meetings, forums, and seminars where data were collected. As an addi tional check of the protocol and procedures, the researcher asked four non-caregiver graduate students to read the instrument and answer all items as quickly and accurately as possible. Th e researcher compared co mpletion times of four caregivers and completion times of the non-caregivers in orde r to accurately present a completion time estimation to volunteers for the pilot study and fi nal population. The completion time for the four panel members was longer than the completion time by the graduate students. The time participants in both the p ilot study and final populatio n took to complete the instrument ranged from 15 to 35 minutes. Procedures Beginning in Summer 2005, social support organizations were contacted and requested to participate in the study (Appendices A and B). Participants fo r the pilot study (N=25) were recruited from meetings of so cial support groups facilitated by the Family Caregiver Support Program (Appendix C). Although circumstances di ffer, pilot studies usually include a small number of subjects, often selected for convenien ce (Alreck & Settle, 1995) Caregiver meetings for the pilot study were held in North Centra l Florida counties, othe r than Alachua County, during August and September 2005 (Appendix C). Participants were recruited at a caregiver support group mee ting with the group facilitator present. The group facilitator previously had been contacted and the researcher had received permission to attend the meeting and ask for volunt eers. Participants for the pilot study, as well

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73 as the final study population, were caring for an indi vidual in their homes or at another facility (hospital, assisted living or nur sing home), and on a full-time or part-time basis. Participants provided care that included some Activities of Daily Living ( ADLs) such as bathing, changing and feeding, or some Instrumental Activities of Daily Living (IADLs) such as shopping, paying bills, cooking, and helping to clean a house or apartment (Arno et al., 1999). A codebook was set up before data were collected Each item in the instrument was coded for data management purposes. Surveys for the pilot study population were numbered from 1 to 25. The Keirsey Temperament Indicator II items were coded according to temperament type as outlined in the test manual. The information was recorded in an Excel spreadsheet, followed by information from the remainder of the survey. At the meetings, the researcher introduced he rself and briefly described the survey and its contents, and her affiliation with the University of Florida. She indicated that a gift card incentive would be provided upon completion of th e entire survey. Volunteers who agreed to participate received two copies of the Informed Consent, a Keirsey Temperament Indicator II booklet, the Caregiving Self-Efficacy Scale, and th e Caregiver Profile Information questions. Each participant kept a copy of the Informed Consent form with contact information, and a signed copy was given to the researcher. At the meetings, the researcher instructed part icipants to answer all items in the best way possible, and to answer each item as it pertained to them at the present time. For example, a frequent comment about some items on the Keir sey Temperament Indicator II was, Both of these apply; how do I answer it? The resear cher was present during the completion of the survey if any questions arose about instrument items. The researcher always instructed participants to choose the better response for their cu rrent caregiving situation.

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74 While the survey was being completed, some participants discusse d the questions with other participants or made comments to the re searcher about the survey. Therefore, a noise factor evolved during survey completion, perhaps due to the fact that ma ny caregivers were close friends, regardless of age and ethnicity. As one caregiver said, We are like a family. During other meetings in the pilot study, some particip ants arrived 10-15 minutes after the meeting began. Therefore, a lag time occurred between completion of the survey by participants who arrived on time and those who arrived late. Du ring the time the latecomers were completing their survey, other group members chatted among themselves or queried the researcher further about her study. All surveys were checked to ensure that all se ctions were completed. Only one survey was not fully completed. Participants who complete d the protocol received their choice of a 60minute telephone card or a $5.00 gift certificate from Publix or WalM art. Most of the requests were for gift certificates from Publix or WalMart and both were equally popular. Completed surveys were returned to the researcher who pres ented participants with the gift card of their choice. Participants who chose not to finish and complete the surv ey, did not receive a gift card. When all surveys had been collected from particip ants, the researcher thanked the group for their assistance and left the meeting. Groups for the pilot study ranged from three to 10 participants. Pilo t study participants required an average of 25 minutes to complete the protocol. Participan ts who wanted to know their temperament type were assured confidential ity by the researcher an d contacted by mail at a later date with the information. Informed Consent The University of Florida Institutional Revi ew Board (IRB) approved the data collection procedures for the pilot study and for the final study population (Appendix I). Participation in

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75 the pilot testing and final study was voluntary. Al l participants received a description of study procedures and information regard ing their rights as a participant, and complete confidentiality was guaranteed and protected. Participants were informed that they could discontinue answering questions at any time during th e process without penalty. Because volunteers were recruited from speci fic caregiver support meetings, only the support group name was used to identify part icipants on the Excel spreadsheet. The only identification of participants was by type of group for the data collected and by number on the survey for analysis purposes (i.e., Hospice, Ca regiver meeting, Health Fair/Forum). Only the researcher had full access to identification of participant names through the signed informed consent forms. Findings Descriptive statistics were calculated to determine baseline frequency rates in each temperament category, average self-efficacy scores frequency rates for race/ethnicity, frequency rates for self-reported health, and frequency of se lf-reported difficulty in caring for their friend or family member. Females comprised 92% of the pilot study population (n=23), w ith the percent of White/Caucasian and African American participan ts at 60% and 40%, respectively. These were the only two races represented in the pilot study. Most caregivers (72%) were aged 50 or older (n=18) and married (52%, n=13). Most caregivers reported their overall health as excellent, very good, or good (68%, n=17). Guardians were the most frequently reporte d temperament type (72%, n=18), followed by Idealists (16%, n=4), and Artisans (12%, n=3). No participants in the pilot study were reported in the Rational type.

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76 The majority of care receivers were aged 60 or older (80%, n=20) with most being a parent (28%, n=7) or a spouse (24%, n=6). Regarding degree of difficulty in caring for the individual, caregivers most often reported a li ttle difficult (44%, n=11) or difficult (28%, n=7). The most often reported il lness of the care receiver was some form of dementia (i.e., Alzheimers Disease), which participants wrot e in under the Other response option. The exclusion of dementia as an option was an oversight when crea ting the instrument. Potential bias was controlled in four ways. Fi rst, the same data protocol was followed at almost all meetings, health fairs, and health fo rums. Meetings usually were about one hour in duration, while health fairs and health forums were at least four hours in duration (i.e., 10 a.m. to 2 p.m.). Second, the researcher was present to assi st with questions or co ncerns at all meetings for the pilot study and almost all meetings for the final population. The only exception where the researcher was not present was with the Hospice volunteers. This proce ss is discussed in the Final Study section. Third, the researcher wa s able to assess, at the time of completion, whether the caregiver had inadvert ently missed or skipped any items. Fourth, data analyses were limited to responses from volunteer participants who were 18 years or older, who were currently caring full-time or part-time for a friend or family member 21 y ears of age or older, and who were caring for the individual in their home or at a nother facility with frequent access. Based on results from pilot testing, some adjustments were made to the data collection procedures, instruments, and car egiver profile demogr aphic information. In the pilot study, the self-efficacy scale and demographics portions of th e instrument were printed on both sides of the survey (i.e., front and back of the paper). This created confusion among some pilot study participants because caregivers did not notice the questions on the back side of the paper, missed some questions and left them unanswered. Howeve r, because the researcher was present at all

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77 Pilot Study caregiver meetings and reviewed the su rvey before presenting the gift card, she was able to return the unanswered portions to volun teers and they were asked to complete the unanswered portion. For the final population, particip ants received surveys printe d on one side only. Also, for the pilot study, the researcher did not seal th e 70 Keirsey Temperament Indicator II questions from the coding portion of the booklet (see Appendi x E), and some participants turned to the coding portion of the booklet after completing the 70 questions. For the final study, the researcher stapled or taped th e question portion of the booklet from the coding portion of the booklet and wrote Do Not Open to prevent confusion among partic ipants. The researcher also verbally asked participants to stop immedi ately after completing the 70 questions. Likewise, on the self-efficacy scale, some participants in the pilot study attempted to calculate their own total scores. The researcher instructed partic ipants for the p ilot study and the final population to leave the total score line blank. Final Study Instrumentation The final version of the study protocol was pr epared to include a script for prospective participants (Appendix G), the Caregiving Se lf-Efficacy Scale (Appendix D), the Keirsey Temperament Indicator II (Appendix E), and the Caregiver Profile Information (Appendix F). The Caregiver Profile Information included one add itional item suggested during the pilot study: 21. Do you care for more than one individual? This item required a yes or no answer from participants. If no then the researcher coded the number of care receiver s as . If yes, then the caregiver was asked If yes, how ma ny total? Below item 21, the caregiver responded to the subsequent items NOTE: If you are caring for more than ONE person, please answer the following questions for ONE of the individuals you care for. The researcher did not prompt

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78 caregivers to answer regarding the most (or least) difficult care rece iver. Therefore, caregivers may have responded for the person that occupies more of their time. Procedures Data for the final study were collected duri ng Fall 2005 and Spring 2006. Participants for the final population were recruited from caregiver meetings, health forums of social support groups facilitated by the Family Caregiver Support Program, health fairs sponsored by various organizations including the county Aging Care Services, health fairs sponsored by county Hospice organizations, Haven Hosp ice volunteer base, and support groups at various assisted living facilities (Appendix B). To collect information from the volunteer base at North Central Florida Hospice organization, the researcher submitted documents for review by the research board at Hospice, met with the board to address questions or conc erns, and ultimately received approval. Finally, the researcher met with voluntee r group facilitators and discussed appropriate procedures and options to distribute the survey to their volunteers to c ontrol bias in this group. The researcher instructed volunteer group facili tators how to answer general que stions regarding the survey, and how to answer questions unique to their particular s ituations. Hospice vol unteers were unique in that some were currently caregivers to a family or close friend, but all Hospice volunteers were providing frequent and continuing respite caregi ving to families, or family members, and caring for someone with a terminal illness. Wh en the researcher received permission to use the Hospice volunteers, information regarding the process of recruitment was not provided. However, the researcher was able to use this volu nteer base after providin g careful instruction to group facilitators, a detailed set of instructions and a precise script presenting any concerns. Participants for the final study (N=160) came from some 10 counties in the North Central Florida region, including Alachua County. The researcher traveled north to the Florida-Georgia

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79 border, south to Weeki Wachi, as well as east and west between these locations to recruit caregivers. At least 10 meetings were cancelled during the course of data collection due to facilitators being unavailable or facilitators not having enough caregivers (participants) who could attend. The original group of participating organizations grew in number during the course of data collection due to referrals from the original organizations and from individuals. Only the original organizations contacted before the pilot study began are listed (Appendix B) due to the large number of organizations ultimately involv ed. One of the origin al organizations, the Alzheimers Association of North Central Florida, decided not to permit th e researcher to attend meetings and recruit volunteers. Sample size was set by effect size and Type I error rate. Effect size in this study was interpreted as meaning that no association existe d among variables. Effect size was estimated at 10 participants per treatment. Type 1 error rate was set at =05, and effect size (designated as 2) was set conservatively (~.10) for a projecte d pool of up to 200 participants (Cohen, 1988; Practical Introduction to Power and Effect Size, pg. 1). Definitions of effect size are small (r = + .20); medium (r = + .30), and large (r = + .50). Estimation of power for a statistical test allows the researcher to determine how many participants are necessary in each group to show adequate probability to assess significance, if any. Power of a statistical test depends on alpha level or Type 1 error rate, effect, and sample size. In general, sample sizes of more th an 100 individuals are considered to have good statistical power (Kaplan, 2006, para 1). The rese archer attended meetings until 160 participants had responded to the survey. This number wa s sufficient to support the data analyses and provide adequate validity and reliability.

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80 Participants in the final study completed the inst rument in the same manner as in the pilot study (i.e., at support group meetings health forums, etc.). The number of social support groups, health fair groups, and health forum particip ant groups ranged in size from three to 25, depending on type of group and county in which the group or event took place. During the pilot study, most surveys were completed at the beginn ing of a caregiver meeting. During the final study, when the researcher attende d meetings, health fairs, and forums, participants completed the survey at the beginning of an event, during a lunch break, at th e end of a meeting, or at other times during the event. As in the pilot study, talking by participants a nd non-participants created a noise factor. At health fairs and health forums, the researcher sat at a designated table with chairs available for participants to complete the survey. During these events, participants talked with the researcher throughout the day. At adjoining tables, other health care providers offered blood pressure checks, bone density tests, and other screening ex ams, often causing a distra ction for participants completing the instrument. This distraction ofte n caused participants to take longer at their responses. At some health fairs and forums, par ticipants requested to ta ke the survey to other chairs and tables in the room to complete them Some participants opted to sit outside the building or at a quieter location to complete the instrument, which meant that the researcher was not always in close proximity to the participan ts for questions regarding the survey. Some participants (about 10%) declined the gift card incentive offered to them for completing the survey. Each completed instrument was assigned a num ber and recorded by type of group in the codebook at the time of data co llection. The number coincided with the specific support group

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81 (i.e., 1=Alzheimers group, 2=general social supp ort group, etc.). Other than the group code, no other means existed to identify participants. Data Analysis Data were obtained from volunteer participan ts who were 18 years or older, who were currently caring full-time or part-t ime for a friend or family member 21 years of age or older, and who were caring for the individual in their home or at another f acility with frequent access. The Keirsey Temperament Indicator II was c oded according to temperament type in the booklet as outlined in the test manual. Originally, each temperament type was coded as for not having the temperament, and for having the temperament. For example, if a volunteer was a Guardian temperament, only this temperament would have a and the other three would have a . When analyz ing the significance of the research question, temperament types were recoded. One temperament was recoded as 1, and then the others were recoded as , and . Finally, the four types were combined under one variable for analyses (Meyer, McGrath, & Rosenthal, 2003). Respons es that were left blank (i.e., not answered) were coded as for items on the Keirsey Temperament Indicat or II, and Caregiver Demographics. Blank responses on the Caregiving Self-Efficacy Scale were also coded as . Other categorical variables, such as total time in the caregiver role and daily time spent in the caregiver role, also were r ecoded. After examining frequenc y tables for these variables, categories were collapsed and recoded for a more accurate calculation in data analyses. All Keirsey Temperament information was recorded on an Excel spreadsheet, followed by information from the remainder of the survey, including the Caregiving Self-Efficacy Scale total score, and caregiver demographic informati on, and then transferred to SPSS v. 14.0 for statistical analysis.

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82 After determining that the data set was norma lly distributed, descrip tive statistics were calculated to determine baseline frequency ra tes in each temperament category, average selfefficacy scores, frequency rates for race/ethnicity, frequency rates for self-reported health status, and frequency of self-reported difficulty in caring for the friend or family member. Several types of data analyses were conducted on the final data set to determine a profile of participants in the study. Bivariate analyses included 1-way analysis of variance (ANOVA) and Spearman Rank Correlation measures that were us ed to analyze research questions one through five. Analyses for all research questions were tested at a .05 significance level for Multiple Linear Regression was used to examine associati ons between each of the four temperament types (explanatory variable), total self-efficacy score, total duration of care (outcome variables), and relationship to the care receiver (covariate). Univariate Procedures Univariate analyses can be used to present primary statistical information and to assess patterns within a data set (McDermott & Sarvel a, 1999; Noland, 2000). In this study, frequency distributions and descriptive stat istics were calculated to obta in baseline information about frequency of gender, race/ethnicity, temperamen t type, mean self-efficacy scores, and all other variables. These descriptive statistics were al so used to determine a general profile of the caregiver population for the study. Bivariate Analyses One-Way Analysis of Variance (ANOVA), an infere ntial statistic, can be used with more than one independent variable, each of which ma y include two or more conditions. When only two conditions exist in a single independent variable, using a On e-Way ANOVA is equivalent to a T-test. However, ANOVA has an advantage becau se it generalizes to experiments with more

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83 than one independent variable, and may include more than two levels or conditions for each independent variable (Weaver, 2003, pa ra. 1; BBN Corporation, 1997, para 5). ANOVA compares variance of scores within conditions. Variance of condition produces the sum of squares within groups (SSwg), and sum of squares between groups (SSbg), respectively. Output from each observation (exper iment) consists of variations from an overall mean value (Reliasoft Corporation, para. 2). These variations are due to factor or level, or to variation due to random error. The ANOVA model used is, where, = the overall mean, = the level effect, and = the random error component. Spearman Rank Correlation measures correlatio n between two value sequences, usually with one ordinal and one continuous variable. Each sequence is ranked separately, with rank differences calculated at each position, i A nonparametric (distribution-free) rank sta tistic measures strength of association between two variables (Wei sstein, page 1, para. 3). Multivariate Analyses A Stepwise multiple linear regression model was used to conduct multivariate analyses for the outcome (DV) and explanatory (IV) variables, and for any covariates. A multiple regression model can be used when explanatory (IV) variab les are continuous when we enter temperament type as separate entities, as in the Keirsey Temperament Indicator II and when the outcome variable is continuous, as in the Caregiving Se lf-Efficacy Scale, and with a normal distribution, as was indicated in this populat ion. The four temperament type s in the Keirsey Temperament Indicator II were treated as four different explanator y (continuous) variables

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84 Multiple regression can be used to predict, or learn, about the relationship between a dependent variable and several independent variables (StatSoft, 2006; PA765, 2006). Multiple regression examines the relationship between eac h of the IVs and the DV after taking into account the remaining IVs (Rosner, 2000, p. 466-467). Y = b1x1+b2x2 +bnxn + c Where Y is the dependent variable and 1z1 + 2z2 + 3z3 is the dependent variable, the bs are regression coefficients, which represent the change in the dependent variable (y) when the independent variable changes 1 unit. The c is the constant. Multiple regression is similar to assumptions given in correlations in that th e relationship linearity is observed with the absence of outliers (PA 765, 2006). Th e error is assumed (PA 765, 2006). Stepwise multiple regression, or statistical regr ession, computes the ordinary least squares, used for the best fit of the re gression line. In this process, the independent variable that correlates best with the dependent variable is factored into the equation. Then, the rest of the independent variables with the highest partia l correlation with the dependent variable, are computed after controlling for the first independent variable. Stepwise re gression is most often used to explore and predict research questions (PA765, 2006). Instrument Reliability Instrument reliability for the Caregiving Self-Efficacy Scale and the Keirsey Temperament Indicator II was generated based on final study population data us ing Cronbachs alpha measure of internal consistency (Cronbach, 1951; Traub, 1994; Crocker & Algina, 1986). The Caregiving Self-Efficacy Scale produced a total reliability of .90 (Table 3-1). Although not included in the analysis of data for this study, reliability coefficien ts also were generated for the

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85 three subscales of the Caregiving Self-efficacy Scale: .85 (Obtaining Respite), .87 (Controlling Upsetting Thoughts about Caregiving), and .93 (Res ponding to Disruptive Patient Behavior). To estimate reliability for the Keirsey Temperament Indicator II, each of the 70 items completed by all 160 participants was coded as for a and for b. This process generated a Cronbachs alpha of .86 for the instrument total score. Although not included in the analysis of data for this study, reliability coeffici ents also were also ge nerated for E/I (.77), S/N (.73), T/F (.70), and J/P (.72). Questions for each dyad characteristic were grouped as follows: questions for E/I are numbers 1, 8, 15, 22, 29, 36, 43, 50, 57, and 64; ques tions for S/N are numbers 2, 3, 9, 10, 16, 17, 23, 24, 30, 31, 37, 38, 44, 45, 51, 52, 58, 59, 65, and 66; questions for T/F are 4, 5, 11, 12, 18, 19, 25, 26, 32, 33, 39, 40, 46, 47, 53, 54, 60, 61, 67, and 68, and questions for J/P are 6, 7, 13, 14, 20, 21, 27, 28, 34, 35, 41, 42, 48, 49, 55, 56, 62, 63, 69, and 70. Summary Chapter 3 described the methods used to examine associations between different temperament types and perceived self-efficacy among individuals serving in an informal caregiver role. The chapter incl uded a description of the resear ch design, research variables, instruments, the pilot study, the final study, and data analysis pro cedures. Data were collected from informal caregivers for the pilot study during August and September 2005 and for the final population from October 2005 through January 2006. A total of 25 caregivers participated in the pilot study and 160 caregivers particip ated in the final population. Descriptive statistics were calculated to determine baseline frequency rates in each temperament category, average self-efficacy scores frequency rates for race/ethnicity, frequency rates for self-reported health status, and frequenc y of self-reported difficulty in caring for the friend or family member. Bivariate analyses included 1-way analysis of variance (ANOVA),

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86 and Spearman Rank Correlation measures were used to analyze research questions one through five. Analyses for all six research questions were tested at a .05 significance level for Multiple Logistic Regression was used to exam ine associations betw een each of the four temperament types (explanatory variable), tota l self-efficacy score, to tal duration of care (outcome variables), and relationship to the care receiver (covariate). Chapter 4 discusses results from analyses of the six resear ch questions posed in the study. Table 3-1. Instrument specification table Scale Variable Type of Item Possible Responses Reliability Variable Number For Each Item Coefficient Keirsey Temperament Explanatory/ 70 2 .86 Indicator Outcome Caregiving Self-Efficacy Explanatory/ 15 100 .90 Outcome

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87 Table 3-2. Keirsey Temparament Indicat or II Item to total correlation Item Corrected It em-Total Correlation Cronbachs Alpha if Item Deleted Q1 .024 .86 Q2 .176 .86 Q3 .024 .86 Q4 .288 .85 Q5 .033 .86 Q6 .226 .86 Q7 .069 .86 Q8 .147 .86 Q9 .454 .85 Q10 .108 .86 Q11 .418 .85 Q12 .226 .86 Q13 .337 .85 Q14 .178 .86 Q15 .112 .86 Q16 .382 .85 Q17 .187 .86 Q18 .434 .85 Q19 .250 .86 Q20 .333 .85 Q21 .192 .86 Q22 .084 .86 Q23 .182 .86 Q24 .175 .86 Q25 .239 .86 Q26 .409 .85 Q27 .246 .86 Q28 .219 .86 Q29 .331 .85 Q30 .111 .86 Q31 .284 .85 Q32 .278 .85 Q33 .205 .86 Q34 .269 .85 Q35 .288 .85 Q36 .229 .86 Q37 .398 .85 Q38 .326 .85 Q39 .300 .85 Q40 .310 .85 Q41 .543 .85 Q42 .316 .85 Q43 .066 .86 Q44 .342 .85 Q45 .401 .85 Q46 .168 .86 Q47 .226 .86 Q48 .432 .85 Q49 .275 .85 Q50 .204 .86

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88 Table 3-2. Continued Item Corrected It em-Total Correlation Cronbachs Alpha if Item Deleted Q51 .238 .86 Q52 .224 .86 Q53 .288 .85 Q54 .245 .86 Q55 .392 .85 Q56 .319 .85 Q57 .110 .86 Q58 .481 .85 Q59 .414 .85 Q60 .370 .85 Q61 .355 .85 Q62 .422 .85 Q63 .369 .85 Q64 .164 .86 Q65 .230 .86 Q66 .324 .85 Q67 .166 .86 Q68 .196 .86 Q69 .138 .86 Q70 .483 .85

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89 Table 3-3. Caregiving Self-Efficacy Scale Item to total correlation Item Corrected Item-Total Correlation Cronbachs Alpha if Item Deleted Item 1 (Respite) .57 .89 Item 2 (Respite) .55 .89 Item 3 (Respite) .50 .89 Item 4 (Respite) .47 .89 Item 5 (Respite) .53 .89 Item 6 (Upset) .55 .89 Item 7 (Upset) .59 .89 Item 8 (Upset) .55 .89 Item 9 (Upset) .56 .89 Item 10 (Upset) .48 .89 Item 11 (Disregard) .65 .89 Item 12 (Disregard) .68 .89 Item 13 (Disregard) .58 .89 Item 14 (Disregard) .69 .88 Item 15 (Disregard) .66 .89 Figure 3-1: ANO VA Equation Model Y = b1x1+b2x2 +bnxn + c Figure 3-2: Multiple Linear Regression Model

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90 CHAPTER 4 RESULTS This study examined relationships that exis t between different temperament types and perceived self-efficacy among individuals serving in an informal caregiver role. This chapter discusses characteristic s of study participants including group type, gender, race, temperament type, caregiver and care receiver age, overall health status, an d duration of care. The chapter also presents results from data analyses used to address the six research questions posed in the study. Participant Characteristics Study participants included caregivers 18 years of age or older. All participants were caring for an individual 21 years of age or older; caring for an individual with a chronic illness, terminal illness, or other debilita ting illness; caring for an indivi dual on a fullor part-time basis; and caring for an individual in their home or at a facility with frequent access by the caregiver. Data collection procedures produced 160 usable su rveys (64%), which was considered adequate to support statistical tests used in data analyses. The final population had a greater number of female caregivers (n=131, 82%), than of male caregivers (n=29, 18%). Most of the literat ure on caregivers indicate a greater number of female caregivers (about 70%), but the current p opulation had a higher rate of female caregivers possibly because approximately one-third of careg ivers were single, divorced or widowed and possibly husbands of caregivers were still working and not av ailable to attend meetings. Most participants were either White/Cau casian (85.6%) or African American (13.1%), which is not an equitable representation of et hnicities in the United States, but possibly an accurate indication of caregivers in the North Central Florida region. Only a few Hispanic individuals and only one Native American caregiver completed the survey. The population in

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91 the Pilot Study portion was about equal Caucasians and African Americans. It seems that few Hispanic caregivers attended the meetings possibl y because meetings were in rural areas, during times of the day that were not convenient, or tr ansportation was not availa ble. Individuals may not have had sufficient notice, may not have been able to drive to the location (i.e., sharing vehicles in the family), or there may have b een a language barrier in the case of Hispanic caregivers. Therefore, results focused on male s and females who reported their ethnicities as White/Caucasian and African American. Caregiver Group Type, Gender, and Race Table 4-1 provides a summary of participants by type of group where information was collected, gender, and race/ethnicity The characteristics in Table 4-1 reflect the distribution of participants affiliated with various organizations contacted by the researcher prior to collecting information. The researcher sought an even distri bution of participants fro m these organizations. Distribution by gender and race were chosen based on similar studies in the literature, and these variables were discussed and analyzed in this study. Most caregiver information was collected at health fairs and forums (58.1%), followed by general caregiver meetings (28.1%). Health fairs and forums attr acted a larger and more diverse population of caregivers. Caregiver meetings usually ranged in size from three to 10 participants. Most participants were female (82%) and White/Cau casian (85.6%). The literature confirms that more females than males serve in a caregiver role (Cannuscio et al., 2004; Collins et al., 1997). Some researchers estimate that as much as one -third (33%) of men serve as caregivers. The male population of car egivers was much smaller in this study. Temperament Type, Age, Overall Health, and Duration of Care Table 4-2 shows frequency and distribution of temperament type, age, overall health, total duration of time as a caregiver, a nd daily duration of time required in the caregiver role. Most

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92 caregivers were aged 50 or older (n=133, 83.2%), and had provided care for at least two years (n=129, 64.4%). On average, they provided less than a full day of care, defined as 6 hours or less of care each day (n=97, 60.6%). Most caregivers generally described themselves as in good health or better (n=134, 83.8%). In terms of temperament type, the 160 participants were categorized as follows: Guardians (n=120, 75%), Artisans (n=22, 13.8%), Idealists (n=16, 10%), and Rationals (n=2, 1.3%). Most caregivers, re gardless of gender, were Guardians possibly because some characteristics of this temperament include that they are mo re apt to take care of themselves and others around them. Guardians are first and foremost seen as administrators take charge and get things done. Guardians are also cooperative and seek solutions. Similar to the general population (Alpine Media, 2003), mo st individuals seem to be Guardians. Variables in Table 4-2 were selected based on a review of related studies from the literature. These variables were also used for comparisons in the current population of caregivers. Although not used for comparison for data analysis in the current study, age emerged as a particularly important variable because ma ny caregivers were still caring for minor children, parents, and other family members. When comp aring caregiver age, caregiver health and total duration of care (all three ordina l variables), age and health ha d a significant correlation, and total duration of care an d health had a significant correl ation. The younger the age of the caregiver, the better heal th reported by that caregiver, and the longer the caregiver was providing informal care, poorer health was reported. Keirsey presented a distribution of temperam ents drawn from a much larger population, and these participants completed the online versi on of the Keirsey Temperament Indicator II. A number of caregivers in this study had some de gree of access to computers, but most probably could not have completed the online version of the instrument due to inadequate computer

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93 access, time constraints, and lack of assistance in completing the protocol. Future studies on caregiving and self-efficacy may address the issu e of first time parenting, although a different type of self-efficacy scale is required because of levels of expectations and pressures from family and friends to achieve skills. The dynamics in the home, especially among two working professionals, change with the addition of a child. Temperament and Self-Efficacy Temperament and self-efficacy were the inde pendent variables used in the study. Among caregivers in this population, all temperaments showed similar levels of self-efficacy. No significant differences existed in how confident caregivers felt about providing assistance to the care receiver. Table 4-2 shows a comparison of frequency of temperament types for caregivers in this study and those in a separate study of the gene ral population. Table 4-3 shows a comparison of frequency of gender in each temperament type. Table 4-4 provides freq uency and distributions of Temperament Type for the general population, not just those who served as caregivers (Alpine Media Corporation, 2002). Table 4-4 shows the distribution of temperam ent type in this study compared to the national database compiled from individuals who completed the online version of the Keirsey instrument. This distribution is presented onl y for the purpose of visual inspection. Although the frequencies vary between the two groups, Guardians emerged as the most prevalent temperament type in both populations. Conve rsely, Rationals were the least prevalent temperament type in both populations. The mean self-efficacy score of 973.03 (SD=280.39) indicated that caregivers were above average in their confidence in th e caregiver role, perhaps because many of the caregivers in this

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94 study were spiritual and had excellent social supp ort systems. Self-efficacy scores ranged from 350 for the lowest score to 1,500 for the highest score, from a possible maximum score of 1,500. A one-sample Kolmogorov-Smirnov Test for populati on distribution indicated that the test distribution was normal (D=.33). Therefore, the distribution for th e current population was normal (i.e., no distin guishable outliers). Research Questions Research Question One Does a significant association exist in T otal Scale Scores on the Caregiving SelfEfficacy Scale between temperament type as determined by the Keirsey Temperament Indicator II? No significant association existed in self-e fficacy among the four temperament types. To address this question, a oneway ANOVA was conducted on temper ament type self-efficacy. No significant association existed in the level of self-efficacy among the four temperament groups (F=1.96, p=.122) (Table 4-5). Lack of a significant association may be explained in part by the fact that each temperament category included both extrovert or e xpressive (E), and introvert or reserved (I) characteristics. The E/I relations hip dictates how indivi duals deal with significant others in the outside world. In this population, whether a pers on is E/I may determine how that person relates to those outside of the caregive r role, such as asking questions of physicians and other formal health care providers, and in making medical decisions about the car e recipient based on interactions with formal health care providers (Keirsey, 1998). The E/I factor was not analyzed in this population and should pr obably be analyzed separately. Since no temperament type emerged as significantly different in level of self-efficacy, self-efficacy was used as an independent variable (explanatory) to a ddress research questions two through five.

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95 Research Question Two Does a significant association exist between Total Scale Scores on the Caregiving Self-Efficacy Scale and daily duration of care provided by the caregiver? A Spearman Rho Correlation was used, and no significant association existed in selfefficacy for any of the six ranges (Appendix F) of time spent caring on a daily basis. To address this question, a Spearmans rank order correla tion was conducted with self-efficacy and daily duration of care. No significant association wa s found in self-efficacy for any of the six ranges (Appendix F) of time spent caring on a daily basis (r=-.048, P=.545) (Table 4-6). For comparison purposes only, no significant associati on existed when a one-way ANOVA was used (F=1.344, p=.249). Self-efficacy was not a factor in how long an in dividual cares for someone on a daily basis. Thus, an individual who spends a brief amount of time each day in the caregiving role feels as confident as those who spend more time in the caregiving role. Several factors may help explain this finding. Based on the review of literature and the characteristics of the study popul ation, caregivers who care for indi viduals for more time during the day (i.e, 6 or more hours) often feel more confident because they have less difficulty in caring for that person, compared to caregivers who spend a brief amount of time (i.e., 1 or 2 hours) with someone with a more severe illne ss. Also, those who spend fewer hours in the caregiving role may also hold full time jobs out side the home, whereas those spending more daily hours in caregiving may not work outside the home. In addition, caregivers who spend more time each day with the care receiver may have found an adequate social support system (i.e., caregiver meetings), as we ll as other sources of informal support, such as close friends, neighbors, and family members.

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96 Although not part of the analysis for resear ch question (see Question #6), multivariate analysis indicated that caregivers who were not re lated to the care receiver tended to have shorter durations as a caregiver. The variable of duration of care was combined with self-efficacy, temperament, total duration of care and relationship to care receiver. Research Question Three Does a significant association exist between Total Scale Scores on the Caregiving Self-Efficacy Scale and total duration of care provided by the caregiver? A one-way ANOVA was used to show that a si gnificant association existed between selfefficacy and total duration of care, both with the seven original duration ranges (F=2.504, p=.024), and with the four duration ranges (F= 3.49, p=.017) (Table 4-7). For comparison, a Spearman Rho correlation was used with the four original duration ranges (r=-.002, P=.982). Due to low number of selections for some of the response options, the category for total duration of care was recoded from seven ranges to four ranges. The first two variables, months, and -12 months, were measured as time less than 12 months. Categories three and four were combined, as were categories five and six, based on freque ncy distributions. As individuals continued in the caregiver role, se lf-efficacy waned similarly during the first and second years, and similarly during the third and f our years. Category seven, years or more, was retained as a discreet category. Caregive r self-efficacy was highest before one year, and after five years, of caregiving. A one-way ANOVA with LSD post hoc analysis conducted on self-efficacy and the total duration of care, showed signi ficance both with the seven original ranges (F=2.504, p=.024), and with the four recoded ranges (reported below, F=3.49, p=.017). Individuals often feel less stre ssed as they enter the caregi ver role. Over time, stress increases and caregivers often feel depressed, an d a decline occurs in their health. Their

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97 involvement in friendship circles may decrease because caregivers cannot leave their homes to socialize. Also, during the first few years, care givers may quit jobs to provide full-time care. Eventually, they may decide to pl ace the care receiver in an assisted living facility. A transition occurs in getting to know the facility staff and helping the staff understand the needs of the care receiver, which creates new stressors for caregiver s. Caregivers generall y reach their limit of caregiving in the home after about five years, so tr ansitioning into an assi sted living facility may be viewed as getting the situation under control. Whether the care receiver resided in the hom e or not was not addressed as a research question but, a t-test showed si gnificance. Caregivers who care d for care receivers outside the home had higher levels of self-efficacy. Research Question Four Does a significant association exist between Total Scale Scores on the Caregiving Self-Efficacy Scale and intensity/difficulty of care provided by the caregiver? A Spearman Rho Correlation was used to show a significant relationship between selfefficacy and the degree of intensity/difficulty (ord inal) using the five original response options from the instrument (two-ta iled, r=-.184, p=.020) (Table 4-8). For comparison a one-way ANOVA was used (F=1.480, p=.211). Caregivers who reported low degrees of di fficulty caring for their loved ones showed higher levels of self-efficacy. Mo st caregivers described their res ponsibilities as not difficult at all, a little difficult, or difficult. Only a few described their responsibilities as very difficult or extremely difficult. However, as difficulty increased in the caregiving role, selfefficacy declined. Caregivers usually feel personall y responsible for their loved ones Even if they feel some level of stress in the caregiver role, they feel a personal obligation and em pathy to provide care.

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98 Caregivers who provide care, su ch as assistance with Activities of Daily Living (ADL) versus Instrumental Activities of Daily Living (ADL), of ten do not consider this type of assistance as difficult or even as providing care, but merely as part of their role as a spouse, child, or close family member (Arno et al., 1999). Research Question Five Does a significant association exist in self -efficacy scores as determined by Total Scale Scores on the Caregiving Self-Effic acy Scale and caregiver health status? A Spearman Rho Correlation was used to id entify a significant relationship existed between self-efficacy and caregiver health, using the five original ranges from the instrument (two-tailed, r=-.159, P=.045) (T able 4-9). For comparis on, a one-way ANOVA was used (F=2.075, p=.106). Caregivers who feel healthier cope better in the caregiver role, and they feel more confident making important decisions for the care receiver. When caregiver health declines, caregivers do not feel as confiden t that they can provide the qualit y of care needed for their loved one. They may also feel that they cannot meet their own health needs du e to the amount of time required in the caregiving role. As their health d eclines, especially if th eir health was poor when they began the caregiver role, caregivers may deci de to place the care receiver in an assisted living facility sooner than anticipated. This decision may produce both relief and guilt for not continuing to care for their loved on e. Caregivers may also feel fairly healthy compared to the care receiver. Research Question Six Does a significant association exist betw een overall duration of care and temperament type as determined by the Keirsey Temperament Indicator II self-efficacy scores as

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99 determined by Total Scale Scores on the Caregiving Self-Efficacy Scale and relationship to care receiver? Significant associations existed between leve l of self-efficacy, one temperament type, and two separate relationship categories to the care receiver (Table 4-10). Among the four temperament types, self-efficacy level did not influence daily duration of care. In terms of the four temp erament types, Artisans were most likely to remain the longest in the caregiver role. Among this population of caregivers, Artisans were the second most frequent among the four temperaments, but small in number (n=22). Among the other three temperaments, total duration in the caregiver ro le was not significantly different. As one characteristic of the Artisan pe rsonality, they are more likely to follow a philosophy of living in the moment. Artisans enjoy life and seek resour ces that suit their needs (Keirsey, 1998). Therefore, Artisans may be more resourceful in finding outlets for their st ress in the caregiving role, may not need formal types of support (i.e., attending caregiver meet ings) and they may be more willing to accept assistance from friends and family in managing care for the care receiver. Two relationships between care receiver and ca regiver also were significant, but in the negative direction. First, if the care receiver was a friend or had a relationship other than the options listed (spouse, parent, ch ild, grandparent, in-law, or part ner), duration of care tended to be briefer. Perhaps some form of regret or a different level of frustration exists when the care receiver is not a family member. Second, rela tionships in the other category included those who provided respite care to families or to neighbors. The other category of relationships seemed to indicate a more emotional attachment to the care receiver; therefore, care provided was longer in duration.

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100 Financial support may be a pred ictor of total duration of car e. If the caregiver has adequate financial resources, th eir total duration of care may be longer because of access to formal caregivers (i.e., home care nurses). Caregiver satisfaction and confidence may be implications to understanding careg ivers for health care providers and their recommendations for care receivers. Summary This chapter reported the results from examin ing responses of individuals serving in an informal caregiver role by group type, gender, ra ce, temperament type, age overall health status, and duration of care. A population profile was gene rated showing the distri bution of participants by temperament type, total self-efficacy score, and di stribution of total time in the caregiver role. Most caregivers were White/Caucasian females, older than age 50, who cared for at least one individual. Bivariate analysis indicated al l four temperament types showed comparable self-efficacy levels. No one temperament produced a higher level of self-efficacy than any of the other three. Total level of self-efficacy did not affect amount of time spent on a daily basis in the caregiver role, perhaps because some individuals caring for a person one or two hours each day also held full time jobs outside the home, creating an added stressor. Total level of self-efficacy was significantly a ffected by total time (duration of care) in a caregiver role, degree of intensity/difficulty in the caregiver role, and self-reported caregiver health. Caregivers felt more confident very ea rly on, possibly because of higher levels of social support, and also after five years in the caregiv er role, perhaps due to comfort level and other assistance received in caring for th eir loved one. Most caregivers did not report that caring for a loved one was very difficult or extremely difficult, but the more difficulty in the caregiver

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101 role, the lower the self-efficacy level. The poorer the health status of the caregiver, the lower the level of self-efficacy. Multivariate analysis indicated that the temper ament type, Artisans, served in the caregiver role the longest of the four types. However, one implication could be that Artisans may need greater assistance as more time passes in the caregiver role, and Guardians may need more assistance at early onset in the caregiver role. Caregivers in a short-te rm relationship with the care receiver seemed to have less long-term emo tional attachment and were caregivers for briefer durations. Chapter 5 presents a summary, conc lusions, and recommendations from the study for future research in this field.

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102 Table 4-1. Distribution of particip ants by group type, gender, and race % Group Caregiver Meetings 45 28.1 Health Fairs and Forums 93 58.1 Hospice Group 20 12.5 Alzheimers Association 1 6 Assisted Care Facilities 1 .6 Gender Male 29 18.1 Female 131 81.0 Race African American 21 13.1 Native American 1 .6 White/Caucasian 137 85.6 Hispanic/Latino 1 .6

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103 Table 4-2. Distribution by temperament type age, overall health, and duration of care % Temperament Type Artisan 22 13.8 Guardian 120 75.0 Idealist 16 10.0 Rational 2 1.3 Caregiver Age 19 or under 7 4.4 20-29 3 1.9 30-39 6 3.8 40-49 11 6.9 50-59 34 21.3 60-69 52 32.5 70-79 47 29.4 Overall Health Excellent 38 23.8 Very Good 48 30.0 Good 48 30.0 Fair 24 15.0 Poor 2 1.3 Total Duration of Care 6 months or less 16 10.0 6-12 months 10 6.3 1 year 15 9.4 2 years 23 14.4 3 years 21 13.1 4 years 15 9.4 5 years or more 60 37.5 Daily Duration of Care 1 hour or less 31 19.4 1-3 hours 49 30.6 4-6 hours 17 10.6 7-9 hours 15 9.4 10-12 hours 11 6.9 12 hours or more 37 23.1 Relationship to Care Receiver Parent 56 35.0 Spouse 51 31.9 Child 8 5.0 Grandparent 8 5.0 In-law 8 5.0 Friend 12 7.5 Partner 1 .6 Other 16 10.0

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104 Table 4-3. Distribution of Gender by Temperament Type Keirsey Temperament Type Male () Female () Total Guardian 23 97 120 Artisan 4 18 22 Idealist 2 14 16 Rational 0 2 2 Table 4-4. Distribution of Par ticipants by Temperament Type KEIRSEY TEMPERAMENT TYPE NATIONAL DATA BASE DISTRIBUTION STUDY POPULATION DISTRIBUTION Guardian 45.9% 74.2% Artisan 17.6% 13.8% Idealist 28.2% 10.1% Rational 8.4% 1.3% Table 4-5. ANOVA Table Associ ation between total score for Caregiving Self-Efficacy Scale and Keirsey Temperament Indicator II Sum of Square df Mean Square F Sig. Between Groups Within Groups Total 454051.5 12046498 12500550 3 156 159 151350.494 77221.143 1.960 .122

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105 Table 4-6. Spearmans rank correlation Associ ation between total sc ore on Caregiving SelfEfficacy Scale and daily duration of care Caregiving SelfEfficacy Scale Daily Duration of Care Spearman's rho CAREGIVING SELF-EFFICACY SCALE Correlation Coefficient 1.000 -.048 Sig. (2-tailed) .545 N 160 160 DAILY DURATION OF CARE Correlation Coefficient -.048 1.000 Sig. (2-tailed) .545 N 160 160 Table 4-7. ANOVA Table Associ ation between total score for Caregiving Self-Efficacy Scale and total duration of care in four duration ranges Sum of Squares df Mean Square F Sig. Between Groups Within Groups Total 785936.8 11714613 12500550 3 156 159 261978.946 75093.673 3.489 .017 Table 4-8. Spearmans Rank Correlation Associ ation between total score on Caregiving SelfEfficacy Scale and difficulty of care provided Caregiving SelfEfficacy Scale Difficulty of Care Spearman's rho CAREGIVING SELF-EFFICACY SCALE Correlation Coefficient 1.000 -.184* Sig. (2-tailed) .020 N 160 160 DIFFICULTY OF CARE Correlation Coefficient -.184* 1.000 Sig. (2-tailed) .020 N 160 160 *.Correlation is significant at the 0.05 level (2-tailed)

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106 Table 4-9. Spearmans Rank Correlation Associ ation between total score on Caregiving SelfEfficacy Scale and caregiver health Caregiving SelfEfficacy Scale Caregiver Health Spearman's rho CAREGIVING SELF-EFFICACY SCALE Correlation Coefficient 1.000 -.159* Sig. (2-tailed) .045 N 160 160 CAREGIVER HEALTH Correlation Coefficient -.159* 1.000 Sig. (2-tailed) .045 N 160 160 *.Correlation is significant at the 0.05 level (2-tailed) Table 4-10. Stepwise multiple linear regression analysis of temperament, self-efficacy, total duration of care, and rela tionship to care receiver Variable b SE t p Artisan .882 .400 2.204 .029 Friend -2.136 .525 -4.066 <.001 Other (Volunteer) -1.652 .461 -3.584 <.001

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107 CHAPTER 5 SUMMARY, CONCLUSIONS, AND RECOMMENDATIONS Our nation must face the medical, economic, and personal realities of caring for an aging population. The elderly in the U.S. currently a ccount for about 12.4% of the population, with an expected increase of more than 20% by 2030. I ndividuals aged 65 and older will number about 70 million by 2030 (Goulding et al., 2003; National Fam ily Caregivers Association: Caregiving Statistics, 2000, para. 1; U.S. Department of Health & Human Services, 2001; National Family Caregivers Association: Family Caregive rs and Caregiving Families 2001, 2001, pg. 4, para. 2). This trend is changing the dynamics of our economic and healthcare systems. The mental and physical well-being of caregivers must be prot ected because these indivi duals play a key role in providing care for minor children and for agin g family members, often at the same time. With the increase in average life span and in the populati on of older Americans reaching retirement age, more spouses, family members, a nd others must provide car e to older adults with a chronic or terminal illness. Personal ch aracteristics of caregivers may help explain environmental dynamics, social norms, and influen ces on persons receiving care. Temperament, or the emotional disposition of an individual, rather than personali ty, relates more closely to the emotional make-up of an individual, and can be tter predict and determin e personality, decisionmaking, and coping skills (Morris, 2000). The i ndividual characteristic of temperament type generally remains stable throughout life, while self-efficacy change s with a new life role or life situation. Self-efficacy reflects the belief that an i ndividual can perform specific tasks or make intelligent decisions, as well as the belief that indi viduals can complete a task or make the best decision for oneself or a loved one. Resear chers have begun to study self-efficacy in the

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108 caregiver role (Steffen et al., 2002; Gignac & Go ttlieb, 1996), but few research designs have combined the three variables of temperament, self-efficacy, and informal caregiving. Summary During Summer 2005, social support organizatio ns in the northeas t Florida area were contacted and requested to participate in the st udy. A draft version of the study protocol was prepared that included a script for prospective participants, Caregiver Profile Information, the Caregiving Self-Efficacy Scale, and the Keirsey Temperament Indicator II. A panel of four individuals currently serving as caregivers reviewed the instrume nt for clarity and readability. Pilot testing was conducted on 25 caregivers to assess administration procedures. Based on results from pilot testing, adjustments were made to the script and Caregiver Profile Information A total of 160 individuals made up the fina l study population. Data for the final study were collected during Fall 2005 and Spring 2006. Pa rticipants for the final study were recruited at meetings of social suppor t groups including the Family Ca regiver Support Program, North Central Florida Haven Hospice, and other county and local organizations. Some groups operated in Gainesville and Alachua County, while others provided services th roughout the northeast Florida geographical area. Participants for both the pilot testing and fi nal study were at leas t 18 years of age and currently caring for an ill friend or family me mber aged 21 and older. Participants were providing recipients with care that included activities such as shopping, paying bills, cooking, bathing, and helping to clean a house or apartmen t. Participants were caring for an older individual, such as a sibling, a parent or gr andparent, not a young child or adolescent. Participants completed the instruments at th e support group meetings, health fairs, health forums, and similar support gath erings. The researcher explai ned the study to caregivers, including their rights as a volunt eer, and guarantee of confiden tiality in the study. Before

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109 participating in the pilot testing or final study, participants were asked to sign an informed consent form indicating they understood the nature of the questions aske d and that they were willing to participate. Participants were remi nded that their participation was voluntary, that they were not required to answer any questions they did not wish to answer, and that they could withdraw from the study at any time. Informed consent forms were collected separately from the surveys so participants could not be identified with their responses. A ll participants received a description of the study procedures and information regarding their ri ghts as a partic ipant. Only the researcher knew the id entity of participants. The instruments were number coded to iden tify specific support groups. Other than the code, no means existed to identify individual part icipants. Participants received the instruments and responded directly on these forms. Th e researcher answered questions and provided assistance to participants as need ed to facilitate the process. Those who completed the protocol received as an incentiv e their choice: a $5.00 telephone card (o r approximately 60 minutes), or a $5.00 gift certificate from WalMart or Publix. If participants chose to withdraw from the study prior to completing the survey, th ey did not receive a gift card. In terms of data analysis, two explanatory va riables (temperament type and self-efficacy), four outcome variables (daily duration of care, total duration of care, difficulty of care, and caregiver health), and one covari ate (caregiver relationship to ca re receiver) were chosen through research in Temperament Theory and Social Cognitive Theory (self-efficacy and outcome expectancies) to test for significant associati ons. One-way analysis of variance (ANOVA) and Spearman Rank Correlations analyzed the explan atory variables (IV) a nd dependent variables (DVs). A multiple linear regression model was used to conduct multivariate analysis for the outcome (DV) and explanatory (IV) variables. Multiple regression examined the relationship

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110 between each of the IVs and DVs after taking in to account the remaining IVs (Rosner, 2000, p. 466-467). Instrument reliability for the Caregiving Self-efficacy Scale and the Keirsey Temperament Indicator II was ge nerated based on final study population data using Cronbachs alpha measure of internal consistency (Cr onbach, 1951; Traub, 1994; Crocker & Algina, 1986). Descriptive statistics were calc ulated for caregiver demographics including percent of caregivers in each of the four temperament categories, av erage self-efficacy score, percent of each age category, and gender distribution. One main outcome from the data analysis conf irmed no significant associ ations in the level of self-efficacy among the four temperament types. Therefore, regardless of age, gender, race, or other caregiver characteristics, no one particular temperament type proved more self-efficacious than the other three. When looking at associations between total dur ation of care (with the seven original and four recoded variables), degree of intensity/difficulty (using the fi ve original response options), and caregiver health, significant associations exis ted. If caregivers were just beginning in the caregiver role or had been a caregiver for more than five years, their level of self-efficacy was higher than those with ca regiver experience from two to four years. If caregivers reported a higher degree of intensity, then their self-efficacy tended to be lower, and if caregivers reported that they had poorer health, then their self-efficacy also tended to be lower. Finally, no significant associa tion existed between level of self-efficacy, the four temperament types, and duration of care provided by caregivers wh en using a Multiple Linear Regression approach. Findings from this study can help friends, fam ily members, health care facility staff, and health care providers in assessing self-efficacy among caregivers with different temperament

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111 types, selecting methods and messages to effectivel y reach and assist informal caregivers in their caregiving role, and assisting individuals as they enter the caregiver role Although some of the association between variables used in multivariate analysis to a ssess this population of caregivers showed no significance, future studies can combin e more demographic variables (i.e., gender of caregiver and care rece iver) to understand how this populat ion thinks, makes decisions, and reacts (i.e., personal health) is important for fu ture decisions in the health behavior field. Conclusions The study addressed six research questions: 1. Does a significant association exist in Total Scale Scores on the Caregiving Self-Efficacy Scale between temperament type as determined by the Keirsey Temperament Indicator II? No significant association existed in the le vel of self-efficacy among the four temperament types (F=1.96, p=.122). 2. Does a significant association exist between Total Scale Scores on the Caregiving SelfEfficacy Scale and daily duration of car e provided by the caregi ver? No significant association existed in self-efficacy for any of the six categories (Appendix F) of time spent caring on a daily basi s (r=-.048, P=.545). 3. Does a significant association exist between Total Scale Scores on the Caregiving SelfEfficacy Scale and total duration of care pr ovided by the caregiver? A significant association existed between the independent variable of self-efficacy (continuous) and the dependent variable of total duration of care, both with the seven or iginal variables (F=2.504, p=.024), and with the four recode d variables (F=3.49, p=.017). 4. Does a significant association exist between Total Scale Scores on the Caregiving SelfEfficacy Scale and intensity/difficulty of car e provided by the caregiver? A significant

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112 association existed between the independent variable of self-efficacy (continuous) and the dependent variable of degree of intensity/difficulty (ordinal) us ing the five original response options from the instrument (two-tailed, r=-.184, p=.020). 5. Does a significant association exist in self-effi cacy scores as determined by Total Scale Scores on the Caregiving Self-Efficacy Scale a nd caregiver health status? A significant association existed between the independent variable of self-efficacy (continuous) and the dependent variable of caregiver health (ordin al), using the five or iginal response options from the instrument (two -tailed, r=-.159, P=.045). 6. Does a significant association exist between ove rall duration of care and temperament type as determined by the Keirsey Temperament Indicator II self-efficacy scores as determined by Total Scale Scores on the Caregiving Self-Efficacy Scale and relationship to care receiver? No significant associations exis ted among level of self-efficacy, the four temperament types, and duration of care provided by caregivers. Examining self-efficacy, temperament, total time in the caregiving role, and relationship to caregiver revealed both signifi cant and non-significant a ssociations. Several aspects of the study provided useful information abou t this population of caregivers. For example, the study found significant associations between self-efficacy and several ca regiver characteristics and demographics caregiver health, total duration of care, and difficulty in the caregiver role. Temperament type among participants did not s how significant differences in self-efficacy (i.e., caregivers felt fairly confident in caring for their loved ones) regardless of temperament type. Several reasons may explain why caregiv ers in this population showed no significant difference in self-efficacy levels. For exampl e, many caregivers who completed the surveys

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113 regularly attended the caregiver gr oup meetings. Caregivers unable to attend the meetings with consistency may not have been ad equately represented in the study. Results from analyzing the research questions indicated that levels of self-efficacy were not significant in determining how long caregiv ers provided care on a daily basis, perhaps because those who cared for an individual for s horter durations during the day also had added stressors such as a job outside th e home or caring for minor childre n. However, higher levels of self-efficacy determined how long an individual provided total care. Those who were caregivers for shorter periods of total time (6 months or le ss) and longer periods of tim e (5 years or greater) had higher levels of self-efficacy (p=.017) than t hose who were caregivers for 2, 3 or 4 years. Only caregivers of the temperament type, Artisa ns, served in the care giver role longer. Conversely, those with less emotional attachment in their relationship with the care receiver served for the shortest periods In addition, individuals who cared for more than one person (#21) were not cued (i.e., longer versus shorter time caring for the person) how to answer several questions about the care r eceiver (#22 and #23). Consistent with the literature on caregiving, most pa rticipants in this study were women (82%), but the number exceeded the approximately 60-70% often reported in related research studies (National Family Caregive rs Association, Caregivers Asso ciation, Family Caregivers and Caregiving families, 2001, pg. 4, para. 4; National Fa mily Caregivers Association, Education and Resources, Yes, I am a Family Caregiver, Care giver Resource, 2002, para. 7). The majority of caregivers in this study were older than age 50, and care receivers were older than age 60 (88.2%). Care receivers also were more frequently women (58%) than men (42%). The age and gender of care receivers were c onsistent with current trends in the aging population. More

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114 individuals are living into their 80s, more individuals live longer with multiple chronic illnesses, and women outlive men by an average of a bout seven years (Schultz & Beach, 1999). Among participants, the most frequently repor ted illness of care receivers involved some form of dementia (60%), with heart disease and hypertension the next most often reported illnesses (21%). Caregivers were asked to report all diagnosed illnesses of the care receiver, if known. The literature shows that individuals w ho care for those with Alzheimers or related forms of dementia may experience more mental debilitation than thos e in other populations (Vanderwerker, et al., 2005). Ho wever, this fact did not seem to affect the overall confidence (self-efficacy) level expresse d by caregivers in this study. The majority of caregivers (75%) cared fo r one individual, but 20% cared for two individuals at least part time. More than half (56%) of the pa rticipants cared fo r the individual in their own home. Most caregiver s (60.6%) cared for an individual six hours or less a day, with 50% caring for three hours or less a day. However, about one-fourth of the volunteers in this study (23%) were full-time caregivers (12 hours or more each day). Caregivers often began by providing care part time, and they became more involved in the process as the disease progressed. Spouses usually spend more hours in caregiving than do non-spousal caregivers (Cannuscio, et al., 2004). Most caregivers described demands of the caregiving role as not difficult at all, a little difficult, or difficult regardless of illness or disease of the care receiver (90.6%). Less than 10% felt the demands were very difficult or e xtremely difficult. However, as the time spent in caregiving became more difficult and demand ing, self-efficacy decreased up to 5 years. Research shows that as stress and demands incr ease, the caregiver may feel more angry and resentful, sometimes lashing out or verbally ch astising the care receive r (Beach et al., 2005).

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115 These changes may indicate lack of family or ot her support in caring for the individual, or poor health of the caregiver. Research has shown that more than 50% of indi viduals serve as caregiv ers for at least five years, with eight years as the average time sp ent in caregiving, but depending on the illness, caregiver stress and physiological symptoms can a ppear after one year of caregiving (National Alliance for Caregiving & AARP, 2 004; Foster et al., 2005; Teel & Press, 1999; National Family Caregivers Association: Family Caregive rs and Caregiving Families 2001, 2001, pg. 4, para. 2). Findings for total duration of care indicated that caregivers show grea ter confidence at the beginning ( months or less) and after a longer period of time in the caregiver role ( years or more). Approximately 10% of part icipants had been in the caregive r role for six months or less, while more than 37% had been in the role for five years or more. Studies show that as time in the caregiver role passes, caregiver health decl ines and psychological st ress increases (National Alliance for Caregiving & AARP, 2 004; Foster et al., 2005; Teel & Press, 1999). Participants in this study had higher self-efficacy when caring for an individual after five years, than those who had been caring for an individual two to four y ears, perhaps because they hired assistants for help in the home, or they placed the care receiver in an assisted living facility. Additional data analysis revealed a significant difference betwee n those who cared for individuals in their home and those who did not. Caregivers who cared for care recipients in the home had lower levels of self-efficacy. While individuals are rarely pr epared for the caregiver role, chronic stress (i.e., stress over an extended period of time) is usually not a factor when one begins to care for an individual. The majority of caregivers (73.8 %) reported their health as ex cellent, very good, or good.

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116 Caregivers may feel more effi cacious after the initial caregiving period begins, but over time they feel more stressed and less able to fulfill thei r tasks as a caregiver effectively. As caregiver health declines, they feel less able to provide ba sic tasks (IADLs) for the care receiver. Research shows that caregiver mental health declines more rapidly, and that caregivers need more mental health services when they care for individua ls with dementia (McConaghy & Caltabiano, 2005; Covinsky, et al., 2003). Caregivers who reported themselves as be ing less healthy also felt less confident in providing care for their loved one Similarly, individuals who reported that caregiving was more difficult and demanding al so reported lower levels of self-efficacy. The researcher did not anticipate the exte nt of bonding among individuals attending caregiver meetings. Most caregivers felt a se nse of unity and cohe sion with other group members, regardless of race or age. Almost all caregivers displayed a high sense of spirituality, and many of the groups met in houses of worshi p. The positive energy and the spirituality among caregivers may have increased the self-e fficacy among this population. Overall, this population of caregivers was fairly self-efficaciou s and attended caregiver meetings, and they also felt comfortable attending othe r events that required leaving th e care receiver or attending the event with the care receiver if possible. Study limitations should be noted when interp reting results from the study. The caregiver population for this study was drawn from the No rth Central Florida region and may not be generalized to other geographical regions of the United States. Therefore, caregiver temperament, self-efficacy levels, and other co nclusions about caregive r characteristics should not be generalized to other popul ations, although similarities di d exist between the current study population and other populations from similar st udies as described in the literature.

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117 Recommendations 1. Expand the scope of the current study by using a larger, more geographically and ethnically diverse study population that would extend to other parts within the state and surrounding states as well. 2. Recruit a broader range of indi viduals and organizations involved with caregiving such as assisted living facilities, lo cal and state agencies on ag ing, houses of worship, and physicians offices. 3. Focus on specific characteristics that affect the extent and effectiveness of caregiving such as an analysis of components affecting caregiver health, more specific ity in recording and analyzing factors that determine degree of difficulty in the care giver role, and interaction of these factors with the amount of tim e spent in the caregiver role. 4. Apply qualitative research methods involving info rmal caregivers to gain richer and more personal insight into the medical care and pers onal care needs required by their loved ones. 5. Identify sources of health and medical info rmation consulted by caregivers, and determine how caregivers and care rece ivers use such information. 6. Examine the relationship between self-efficacy, the types of resources, and the sources of social support consulted by an i ndividual before and after the i ndividual begins the caregiver role. 7. Explore the interactions that occur between caregive r and care receiver in various public settings such as health screenings, medica l appointments, or at support group meetings.

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118 8. Determine the effect of combining the variable of caregiver spirituality with self-efficacy, duration of care, degree of diffi culty, and other caregiver demogr aphics, on the level of selfefficacy among different temperament types. 9. Analyze data collected during the current st udy on level of self-efficacy among the four dyads, especially the Extroversion/Introversion dyad, identified as a characteristic among all four temperament types. 10. Use temperament type as the basis for planning interventions and creating health messages directed toward individuals serving in a caregiv er role in order to reach a wider and more ethnically diverse population base. For example, us e places of worship to identify and assist caregivers and others unable to attend regular caregiver suppor t meetings, forums, and health fairs. Also, identify needs of caregivers who may need assistance at the onset of the caregiving role and at different times during in the caregiving role. Regardless of race or ethnicity, each temperament type acts similarl y. Therefore, base information on how a particular temperament likely makes decisions ab out their health and th e health of the care receiver. The current study findings suggest ed important implications fo r professionals in health education and behavior. Indi viduals of the same temperament type behave similarly regardless of gender and ethnicity, so self-efficacy is an important factor to consider when assessing behaviors and planni ng interventions for informal caregivers. For example, a positive relationship existed between Artisan s, self-efficacy, duration of care, and relationship to the care receiver. Artisans al so were more likely to remain longer in the caregiver role.

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119 11. Develop training protocols for management and staff of assisted living facilities that emphasize caregivers needs fo r assistance and support, espe cially during periods of transition, such as when care receivers must be relocated from home into care facilities. 12. Assess caregiver self-efficacy as it rela tes to care receiver satisfaction.

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120 APPENDIX A LETTER OF INVITATION TO ORGANIZATIONS Dear [ Organization Name, Address, and Contact ]: I am writing to request your assistance in completing my doctoral dissertation research project, Relationships Between Temperament Ty pe and Perceived Self-Efficacy Among Informal Caregivers. I am requesting your permission to recruit volunteers, specifically those individuals in a caregiving role, who are caring for someone part time or full time and who are 21 years of age and older. As per our previous conversations regarding this matter, I can now provide proper information and U.F. Institutional Review Board (IRB) approval, which is attached, in addition to a copy of an Informed Consent form, and a copy of the questionna ire the caregivers will be asked to complete. I understand that your organization must review all pertinent information to recruit volunteers. If you have any questions or need further information, please do no t hesitate to contact me at the numbers listed below. Thank you in advance for assisting me in this endeavor. Sincerely, Teresa Lyles, M.A., CHES Doctoral Candidate Department of Health Education and Behavior University of Florida Gainesville, FL 32611-8210 352-219-5166 352-528-3398

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121 APPENDIX B SOLICITATION POSTER FOR VO LUNTEERS IN PILOT STUDY ARE YOU A CAREGIVER OF AN ADULT AGE 21 OR OLDER? Have you been a caregiver for at least one month? Are you a part-time or full-tim e caregiver, age 18 or older? IF SO, I NEED YOUR HELP! *I am a doctoral student at the University of Florida, and I would like to ask you some questions about your care giving experience. *You will complete a survey that takes about 25 minutes. The survey will not pose any risks to you. *If you complete the survey, you will receive a $5.00 gift card. IF YOU ARE INTERESTED, please contact me at these numbers before December 1st: Teresa Lyles, M.A., CHES Doctoral Candidate Department of Health Education and Behavior University of Florida Gainesville, FL 32611-8210 352-219-5166 352-528-3398

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122 APPENDIX C ORGANIZATIONAL CONT ACTS AND PROFILES Alachua County Caregiver Organization Ms. Kathleen Luzier-Bogolea, M.A., M.A.H.S., Director Family Caregiver Support Program 1215 N.W. 14th Avenue Gainesville, FL 32601 Telephone: 352-377-3352 Website: Mission : To improve the quality of life for caregiver s and enable them to provide consistent and loving care. Service Area : Alachua, Bradford, Citrus, Columbia, Dixi e, Gilchrist, Hamilton, Lafayette, Lake, Levy, Marion, Putnam, Sumter, Suwann ee, and Union Counties, Florida Funding : Alzheimers Disease and Related Disord ers Association, Cent ral & North Florida Chapter, Inc., and the State of Flor ida, Department of Elder Affairs Membership : Approximately 1,000 including health professionals Alzheimers Disease & Related Disorders Asso ciation, Central & North Florida Chapter, Inc. Richard Mitchell, Re gional Director 1215 N.W. 14th Avenue Gainesville, FL 32601 Telephone: 352-372-6266; 1-800-272-3900 Website: www.alz.org or www.alzorlando.org Mission : Community outreach program providing suppor t, education and comm unity referrals to individuals and families dealing with potentially life-limiting illnesses. Service Area : Central and North Flor ida (Alachua, Marion, Levy, Di xie, Gilchrist Counties) Funding : Private and Public Membership : Approximately 750 North Central Florida Hospice Transitions (Haven Hospice) Tim Bowan, Director 4200 N.W. 90th Boulevard Gainesville, FL 32606 Telephone: 352-378-2121; 1-800-330-2858 Website: http://www.hospicecares.org/ Mission : To assist individuals with life-limiting illness and their caregi vers before seeking Hospice support. Service Area : Hamilton, Columbia, Baker, Suwannee, Lafayette, Dixie, Levy, Gilchrist, Union, Bradford, Nassau, Duval, Clay, St. Johns, Pu tnam, and Alachua Counties in Florida (Same service area as North Ce ntral Florida Hospice) Funding: Hospice is a 501 (c) 3 not-for-profit orga nization. Medicare, Me dicaid, and some private insurance plans cover some or all of hospice services. Th e provision of Hospice care is based on a person's need rather than the abil ity to pay. Donations, gifts, and memorial contributions to Hospice help provide significant support for hospice services. Membership : Approximately 1,000

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123 Better Living Resource, Inc. Linda Henderson, Private Care Man ager and Geriatric Consultant 5012 N.W. 18th Place Gainesville, FL 32605 Telephone: 352-374-9118 Website: None Mission : Managed care facility provide support and assistance from referred individuals Service Area : Alachua County, Florida Funding: State Membership : Approximately 500 Senior HealthCare Center at Pecan Park Deborah Jervis, Director 810 N.W. 16th Avenue, Suite A Gainesville, FL 32601 Telephone: 352-371-9777 Website: None Mission : Managed care facility providing suppor t and assistance from referred individuals Service Area : Alachua County, Florida Funding: State Membership: Approximately 200 TimberRidge Nursing and Rehabilitation Center Carol Scheftic, Volunteer Services OR Darlene Goddard, Human Resources 9848 S.W. 110th Street Ocala, FL 34481 Telephone: 352-854-8200 Website: None Mission: Managed care facility the provides supp ort and assistance from referred individuals. Service Area : Alachua, Marion, Citrus County, Florida Funding: Private, State Membership: estimate not available

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124 APPENDIX D CAREGIVER SELF-EFFICACY SCALE We are interested in how confident you are that you can keep up your own activities and also respond to caregiving situations. Please THINK about the questions carefully, and be as frank and honest as you can about what you really think you can do. Rate your degree of confidence from 0 to 100 using the scale given below: Not Very Confident Moderate ly Confident Very Confident 0 10 20 30 40 50 60 70 80 90 100 Self-Efficacy-Obtaining Respite How confident are you that you can do the following activities: Confidence 0 -100 1. Ask someone to stay with the care recipient for a day when you have errands _____________ to be done 2. Ask someone to stay with the care recipien t for a day when you feel the need _____________ for a break 3. Ask someone to stay with the care recipien t for a day when you need to see _____________ your physician. 4. Ask someone to do errands for you _____________ 5. Ask someone to stay with the care recipien t for a week when you need time _____________ for yourself Self-Efficacy Controlling Upsetting Thoughts About Caregiving How confident are you that you can control thinking: Confidence 0 100 6. What a good life you had before the care recipien ts illness and how _____________ much youve lost. 7. What you are missing or giving up because of the care recipient _____________ 8. Future problems that might come up with the care recipient _____________ 9. Unpleasant aspects of taking care of the care recipient _____________ 10. How unfair it is that you have to put up with this situation _____________

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125 Self-efficacy Responding to disruptive patient behaviors How confident are you that you can: Confidence 0 100 11. Answer without raising your voice, when th e care recipient asks multiple _____________ time in a short period of time after lunch when lunch is. 12. Respond without raising your voice when s/he interrupts you multiple _____________ times while you are making dinner 13. Say things to yourself to calm down when you get angry because s/he _____________ repeats the same question over and over 14. Answer without raising your voice when s/he forgets your daily routine _____________ and asks when lunch is right after youve eaten 15. Respond without arguing back when s/he complains to you about how _____________ youre treating him/her. TOTAL SCORE _____________

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126 APPENDIX E KEIRSEY TEMPERAMENT INDICATOR II

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127

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128 APPENDIX F CAREGIVER PROFILE INFORMATION (DEMOGRAPHICS) 16. Gender of caregiver: male female 17. Age of caregiver: 19 or under 20-29 30-39 40-49 50-59 60-69 70 or over 18. Marital status of caregiver: single married and living together married but separated divorced widow/widower other (please specify: _______________________________ ) 19. Estimated combined household annual income: $19,999 or less $20,000-$29,999 $30,000-$39,999 $40,000-$49,999 $50,000-$59,999 $60,000-$69,999 $70,000-$79,999 $80,000 or more

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129 20. Race/Ethnicity of Caregiver (X one or more, if applicable)*: American Indian/Alaska Native Asian Indian Black/African American Chinese Filipino Japanese Korean Pacific Islander Spanish/Hispanic/Latino Vietnamese White Multi-Ethnic/Multi-Racial *Categories obtained from 2000 U.S. Census 21. Do you care for more than one individual? Yes (if YES, how many TOTAL __________________) No ( NOTE : If you are caring for more than ONE person, please answer the following questions for ONE of the individuals you care for ). 22. Gender of person you care for: male female 23. Age of person you care for: 18-19 20-29 30-39 40-49 50-59 60-69 70-79 80 or over 24. Your relationship to the person you care for: my parent my spouse my child a grandparent an in-law my friend my partner other (please specify: _______________________ )

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130 25. Do you live at the same loca tion with this person? yes no 26. How long have you provided care for this person? 6 months or less 6-12 months 1 year 2 years 3 years 4 years 5 years or more 27. On average, how much time do you spend each day caring for this person? 1 hour or less 1-3 hours 4-6 hours 7-9 hours 10-12 hours 12 hours or more 28. Overall, how difficult (how hard or how demanding) is it for you to care for this person? not difficult at all a little difficult difficult very difficult extremely difficult 29. If known, what is the disease/illness of the person you care for : cancer diabetes heart disease/disorder hypertension (high blood pressure) respiratory disease/illness (e.g., asthma) other (please specify: _________________________________ ) do not know 30. How would you rate your overall health status NOW? excellent very good good fair poor

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131 31. As best as you can remember, what was your primary source of medical information BEFORE you began your caregiver role? books magazines newspaper Internet/email/chat rooms family or friends doctor/nurses/other medical professional 32. As best as you can remember, what ha s been your primary source of medical information AFTER you began your caregiver role? books magazines newspaper Internet/e-mail/chat rooms family or friends doctor/nurses/other medical professional

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132 APPENDIX G SCRIPT FOR RECRUITING VOLUNTEER CAREGIVERS Good (morning/afternoon/evening), my name is Te resa Lyles. I am a doctoral candidate in the Department of Health Educati on and Behavior at the University of Florida. As part of my dissertation research project, I am recruiting caregivers at least 18 years of age, who care for an individual at least 21 years of age, with a phys ical or mental need. I would appreciate your assistance in completing a survey as part of my dissertation research. You will not directly benefit from completing this survey, but findi ngs from your answers may assist in helping individuals like you in the near future who are in a caregiver ro le. The survey takes about 25 minutes, and I am asking you to complete the survey before you leave this meeting. As a gesture of appreciation for completing the survey, I will give you your choice of a $5.00 telephone card or a $5.00 gift card from Publix or WalMart. Your participation in this study is completely voluntary. If you deci de to participate, you may decline to answer any question that you do no t want to answer, and you can withdraw from the study at any time without any consequence. Your identity and your responses will remain confidential. If you agree to complete the su rvey, you will receive an informed consent form, which is a document that requires your signature for participation. You may keep a copy of the consent form, and I will keep the signed copy. All the information I just read to you is also written on the informed consent form. Thank you for your attention. I appreciate your as sistance with the survey. I will return to this meeting at the same time next week. Pleas e invite any friends or family members who are caregivers, and who you think might be willing to participate in the study, to come to the meeting with you. If you are intere sted in receiving a summary of the research findings or if you are interested in knowing your temperament type your identity will remain confidential. However, I will need a current addre ss in order to send the information. Have a good day.

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133 APPENDIX H PANEL OF CAREGIVERS TO REVIEW PROTOCOL Ms. Jill Miller Ms. Kathy Mladinich 1403 NW 31st Street 2615 NW 20th Street Gainesville, FL 32605 Gainesville, FL 32605 Ms. Diane Gatsche Mr. Keith Meneskie 2157 NW 43rd Place 11514 SW 89th Terrace Gainesville, FL 32605 Ocala, FL 34481

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134 APPENDIX I UNIVERSITY OF FLORIDA INSTITUTIONAL REVIEW BOARD Informed Consent Form Relationships Between Temperament Type a nd Perceived Self-Efficacy Among Informal Caregivers Please read this document carefully before you decide to participate in this study. My name is Teresa Lyles and I am a doctoral candidate in th e Department of Health Education and Behavior, College of Health and Human Perfo rmance, at the University of Florida. The name of my research project is Relationships Between Temperament Type and Perceived SelfEfficacy Among Informal Caregivers. Thank you for your interest in my study. I understand that you are currently a caregiver for someone with either physical or mental needs. My study focuses on how individuals feel about serving in the careg iver role. Your participation is important so we can better understand the needs of caregivers and care receivers. My survey will ask you about your role as a caregiver. The survey will take about 25 minutes to complete. There are no risks or benefits to you from par ticipating in the study, othe r than the benefit of helping me gain knowledge about caregivers. You must be at least 18 years old to participate in the survey. The person you care for must be at least 21 years of age. Your part icipation is completely voluntar y. You may decline to answer any question you do not want to answer. You can w ithdraw from the study at any time without any negative consequences. Your responses and your identity will remain confidential. The information gathered from this study will be used for my dissertation research. Depending on information received about caregivers in this study, other publications may be submitted from the information. Your name will never be used in any document or reports associated with this study. The surveys are coded only for the purpose of analyzing the information. Your name will never appear on the survey. If you have questions about the st udy, contact Teresa A. Lyles, Ph. D. candidate, Department of Health Education and Behavior, University of Florida, 352-392-0583 (ext. 1285) or Dr. R. Morgan Pigg, Jr., Professor, Department of Health Education and Behavior, 352-392-0583 (ext. 1281). For more information about your rights as a rese arch participant, contact the UFIRB Office, Box 112250, University of Florida, Gainesville, FL 32611-2250; ph 352-392-0433. Thank you very much for your consideration! Teresa A. Lyles, Doctoral Candidate _____________________________________________________________________________ I have read the procedure described above for the In formal Caregiver Survey. I attest that I am at least 18 years of age, voluntarily agree to particip ate in the survey, and ha ve received a copy of the project description.

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135 Participant: ______________________________ Date: _______________________ Principal Investigator: ______________________ Date: _______________________

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136 1. TITLE OF PROJECT: Relationships Between Temperament Type and Perceived SelfEfficacy Among Informal Caregivers 2. PRINCIPAL INVESTIGATOR: Ms. Teresa A. Lyles, M.S., CHES, Ph.D. Candidate Department of Health Education and Behavior Room 5 FLG PO Box 118210 University of Florida Gainesville, FL 32611-8210 352-392-0583 (ext. 1285) 352-219-5166 (cell) Tlyles0814@aol.com FAX: 352-392-1909 3. SUPERVISOR: Dr. R. Morgan Pigg, Jr. Department of Health Education and Behavior Room 5 FLG PO Box 118210 University of Florida Gainesville, FL 32611-8210 392-0583 (ext. 1281) rmpigg@hhp.ufl.edu FAX: 352-392-1909 4. DATES OF PROPOSED PROJECT: June 1, 2005 May 31, 2006 5. SOURCE OF FUNDING FOR THE PROJECT: Personal Funds 6. SCIENTIFIC PURPOSE OF THE INVESTIGATION: Research suggest s that two factors temperament and self-efficacy can influen ce how individuals respond to the informal caregiver role, but few studies have explored relationships ex isting among temperament, selfefficacy, and caregiving. This study will examine those relationships among individuals serving as informal caregivers in the north east Florida geographical area. 7. DESCRIBE THE RESEARCH M ETHODOLOGY IN NON-TECHNICAL LANGUAGE (Pilot Study): During the Summer 2005, social support organizations in the northeast Florida area will be contacted and requeste d to participate in the study. A draft version of the study protocol will be prep ared that includes a script for prospective partic ipants, caregiver profile information, the Caregiving Self-Efficacy Scale and the Keirsey Temperament Indicator II A panel of four individuals cu rrently serving as caregivers, or who served as caregivers in the past, will review the instrument for clarity and readability. Pilot testing will be conducted to assess administration procedures and instrument reliability with no more than 25 individuals. Based on results from pilot testing, adjustments w ill be made to the script and caregiver profile information. Data for the final study will be coll ected during the Fall of 2005. Participants will

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137 complete the instruments at the support group m eetings. The researcher and research assistant will read the script explaining the study to caregiv ers, including their rights, and the guarantee of confidentiality in the st udy. The instruments will be numbe r coded to identify specific support groups. Other than the code, no means will exist to identify individual partic ipants. Participants will receive the instruments and an optical scanning form to record their answers. The researcher and research assistant will answer questions and pr ovide assistance to partic ipants as needed to facilitate the process. 8. DESCRIBE THE RESE ARCH METHODOLOGY IN NON-TECHNICAL LANGUAGE (Final Study Population): During the Summer 2005, social support organizations in the northeast Florida area will be contacted and requested to participate in the study. A draft version of the study protocol w ill be prepared that includes a script for prospective participants, careg iver profile information, the Caregiving Self-Efficacy Scale and the Keirsey Temperament Indicator II A panel of four indivi duals currently serving as caregivers, or who served as caregivers in the past, will review the instrument for clarity and readability. Pilot testing will be conducted to assess administration procedures and instrument reliability with 250 individuals for the final study population. Based on results from pilot testing, adjustments will be made to the script and caregiver profile information. Data for the final study will be collected during Fall 2005 and Sp ring early 2006. Participants will complete the instruments at the support group meetings. The re searcher and research assistant will read the script explaining the study to caregivers, including their rights, and the guarantee of confidentiality in the study. The instruments will be num ber coded to identify specific support groups. Other than the code, no means will exist to identify individual partic ipants. Participants will receive the instruments and an optical scanning form to record their answers. The researcher and research assistant will answer questions and pr ovide assistance to partic ipants as needed to facilitate the process. 9. POTENTIAL BENEFITS AND ANTICIPATED RISK: The research methods involve using paper-and-pencil tests that pose no physic al or economic harm to participants. Psychological risks will be no greater th an those experienced in daily life. 10. DESCRIBE HOW PARTICIPANTS WILL BE RECRUITED, THE NUMBER AND AGE OF THE PARTICIPANTS, AND PROPOSED COMPENSATION (if any) (Pilot Study): Approximately 25 participants for the pilo t test and 250 individuals for the final study will be recruited at meetings of several soci al support groups including the Family Caregiver Support Program, Alzheimers Association, North Central Florida Hospice Transitions, and organizations affiliated with the University of Fl orida Center for Aging. Some groups operate in Gainesville and Alachua County, while others provi de services throughout the northeast Florida geographical area. Participants for both the pilo t testing and final study will be at least 18 years of age and currently caring for an ill friend or fam ily member age 21 and older. Participants will be providing recipients with care that includes activities su ch as shopping, paying bills, cooking, bathing, and helping to clean a house or apartmen t. Participants will be caring for an older individual, such as a sibling, a parent or gr andparent, not a young child or adolescent. All participants will receive a descri ption of the study procedures and information regarding their rights as a participant. Particip ants who complete the protocol w ill receive as an incentive their

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138 choice of a $5.00 telephone card or a $5.00 gift certifi cate from WalMart or Publix. If participants chose to discontinue, th ey will not receive an incentive. 11. DESCRIBE HOW PARTICIPANTS WILL BE RECRUITED, THE NUMBER AND AGE OF THE PARTICIPANTS, AND PROPOSED COMPENSATION (if any) (Final Study Population): Approximately 250 participants for the final study will be recruited at meetings of several social support groups including the Fam ily Caregiver Support Program, Alzheimers Association, North Central Florid a Hospice Transitions, and organizations affiliated with the University of Florida Center for Aging. Some groups operate in Gainesville and Alachua County, while others provide services throughout the northeas t Florida geographical area. Participants for both the pilot testing and final study will be at least 18 years of age and currently caring for an ill friend or family member age 21 and older. Participants will be providing recipients with care that include activities such as shopping, paying bills, cooking, bathing, and helping to clean a house or apartmen t. Participants will be caring for an older individual, such as a sibling, a parent or gr andparent, not a young child or adolescent. All participants will receive a descri ption of the study procedures and information regarding their rights as a participant. Particip ants who complete the protocol w ill receive as an incentive their choice of a $5.00 telephone card or a $5.00 gift certifi cate from WalMart or Publix. If participants chose to discontinue, th ey will not receive an incentive. 12. DESCRIBE THE INFORMED CONSENT PROCESS. INCLUDE A COPY OF THE INFORMED CONSENT DOCUMENT: The researcher and research assistant will read a script explaining the study to caregivers, including their rights, and the guarantee of confidentiality in the study. Be fore participating in either th e pilot testing or final study, participants will be asked to si gn a consent form indicating they understand the nature of the questions to be asked and that they are willing to participate. Participants will be reminded that their participation is vol untary, that they can choose not to answer any questions they do not wish to answer, and that they can withdraw from the study at any time. Informed consent forms will be collected separately from the surveys so participants may not be identified with their responses. All participants w ill receive a description of the study procedures and information regarding their rights as a participant. (Please see attached copies of the cons ent form and other project materials.) _______________________________ Principal Investigator's Signature _______________________________ Supervisor's Signature I approve this protocol for submission to the UFIRB: ________________________________ Department Chair/Cent er Director, Date

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139 LIST OF REFERENCES Adamson, J., & Donovan, J. (2005). Normal disr uption: South Asian and African/Caribbean relatives for an older family member in the UK. Social Science & Medicine, 60 37-48. Adler, R. (2002). The age wave meets the t echnology wave: Broadband and older Americans. Senior Net. Retrieved May 15, 2004, from http:// www.seniornet.org Alpine Media Corporation. (2003). The Temperament Sorter II: A statistical study 1st Ed. Orem, Utah: Alpine Media Corporation Alreck P.L. & Settle, R. B. (1995). The survey research handbook: Guidelines and strategies for conducting a surve y. 2nd Ed. Irwin: Chicago. Alzheimers Caregiver Support Online. (2002). Florida Program Gives Online Support to Alzheimer's Caregivers. Retrieved May 13, 2003, from http://alzonline.net/ en/about/media/UF.php American Association for Geriatric Psychiat ry. (2004). Sustaining the commitment: 2003 report from the task force on aging resear ch finding Retrieved April 28, 2006, from http://www.agingresearch.org/broc hures/taskforce/taskforce/pdf American Association of Retired Persons ( AARP), The Magazine. Caregiving: Changing Needs: What you should know, planning ah ead (2002). Retrieved February 26, 2002, from http://www.aarpmagazine.org/family/Artic les/a2003-02-25-meformeresources.html. Amirkhanyan, A. A., & Wolf, D. A. (2003). Caregiver stress and noncaregiver stress: Exploring the pathways of psychiatric morbidity. The Gerontologist, 43 817-827. Arno, P. S., Levine, C., & Memmott, M. M. (1999). The economic value of informal caregiving, Health Affairs, 18 182-188. Artisans: Keirsey.com, (1996) Retrieved May 15, 2004, from http://keirsey.com/personality/sp.html Ayalong, L. (2004). Cultural variants of caregiving or the cult ure of caregiving. Journal of Cultural Diversity, 11 131-138. Bandura, A. (1977). Social learning theory Englewood Cliffs, NJ: Prentice Hall. Bandura, A. (1986). Social foundations of thought and ac tion: A social cognitive theory Englewood Cliffs, NJ: Prentice Hall. Bandura, A. (1994). Encyclopedia of human behavior Vol. 4). In V.S. Ramachaudran (Ed.), New York: Academic Press, pp. 71-81.

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140 Baumgarten, M., Battista, R. N., Infante-Rivard, C ., Hanley, J. A., Becker, R., Bilker, W. B., & Gauthier, (1997). Use of physician serv ices among family caregivers of elderly persons with dementia. Journal of Clinical Epidemiology, 50 1265-1272. BBN Corporation. PROPHET StatGu ide: Analysis of variance (ANOVA) testing equality of means. Retrieved January 10, 2006, from http://www.basic.northwestern.e du/statguidefiles/anova.html Beach, S. R., Schulz, R., Williamson, G. M., Miller L. S., Weiner, M. F., & Lance, C. E. (2005). Risk factors for potentially ha rmful informal caregiver behavior. Journal of the American Geriatric Society, 53 255-261. Biological Aspects of Personal ity: PSY 230, Theories of pers onality. Retrieved July 8, 2005, from http://www.coping.org/adultlink /theories/lectur es/psy230-5th.ppt Bookwala, J., Zdaniuk, B., Burton, L., Lind, B., Jack son, S., & Shultz, R. (2004). Concurrent and long-term predictors of ol der adults use of community-bas ed long-term care services: The caregiver health effects study Journal of Aging and Health, 16 88-115. Brazil, K., Bedard, M., Willison, K., & Hode, M. (2002). Caregiving and its impact on families of the terminally ill. Aging & Mental Health, 7 376-382. Brown, K. M. (1997). Social Cognitive Theory. University of South Florida, Community and Family Health. Retrieved April, 18, 2002, from http://Hsc.usf.edu//~kmbrown/Soci al_Cognitive_Theory_Overview.htm. Burke, M. M. (2004). Exploring differences in intrinsic motivation based on Keirseyan temperament type. Dissertation, Alliant In ternational University, San Francisco Bay, California. Burton, L. C., Newsom, J. T., Schultz, R., Hirsch C. H., & German, P. S. (1997). Preventive health behaviors among spousal caregivers. Preventive Medicine, 26 162-169. Burton, L. C., Zdaniuk, B., Schulz, R., Jackson, S., & Hirsch, C. (2003). Transitions in spousal caregiving. The Gerontologist, 43 230-241. Calahan, C. A. (1996). The relationship of Keirseys temperament types in marr/iage: Do wives perceptions of marital quality predict marital satisfaction in a conservative church setting? Dissertation, Kansas St ate University, Manhattan, Kansas. Calderon-Rosado, V., Morrill, A., Chang, B-H., & Tennstedt, S. (2002). Service utilization among disabled Puerto Rican elders and their caregivers Journal of Aging and Health, 14 3-23. Cameron, J. I., Franche, R-L., Cheung, A. M., & St ewart, D. E. (2002). Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer, 94 521527.

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141 Cannuscio, C. C., Colditz, G. A., Rimm, E. B., Be rkman, L. F., Jones, C. P., & Kawachi, I. (2004). Employment status, social ties and caregivers mental health. Social Science & Medicine, 58 1247-1256. Chou, K-R., (2000). Caregiver burden: A concept analysis. Journal of Pediatric Nursing, 15 398-407. Cohen, J. (1988). Statistical power an alysis for the behavioral sciences (2nd ed.). Hillsdale, NJ: Lawrence Earlbaum Assoc. Cohen, M. A., Miller, J., & Weinrobe, M. (2001). Patterns of informal and formal caregiving among elders with private l ong-term care insurance. The Gerontologist, 41 180-187. Collins, C. C., & Jones, R. (1997). Emotional distress and morbidity in dementia carers: A matched comparison of husbands and wives International Journal of Geriatric Psychiatry, 12 1168-1173. Conn, V.S., Burks, K. M., Pomeroy, S. H., Ulbr ich, S. L., & Cochron, J. E. (2003). Older women and exercise: Explanatory concepts. Womens Health Issues, 13 158-166. Connell, C. M. (1994). Impact of spouse car egiving on health behaviors and physical and mental health status. The American Journal of Alzheime rs Care and Related Disorders & Research, January/February 26-36. Coon, D. W., Rubert, M., Solano, N., Mausbach, B ., Kraemer, H., Arguelles, T., Haley, W. E., Thompson, L. W., & Gallagher-Thompson, D. (2004). Well-being, appraisal, and coping in Latina and Caucausian female dementia car egivers: Findings from the REACH study. Aging & Mental Health, 8 330-345. Coon, D. W., Thompson, L., St effen, A., Sorocco, K., & Gallagher-Thompson, D. (2003). Anger and depression management: Psychoeduc ational skill training interventions for women caregivers of a relative with dementia. The Gerontologist, 43 678-689. Covinsky, K. E., Newcomer, R., Fox, P., Wood, J ., Sands, L., Dane, K., & Yaffe, K. (2003). Patient and caregiver characteristics associated with depression in caregivers of patients with dementia. Journal of General Internal Medicine, 18 1006-1014. Crocker, L. A., & Algina, J. (1986). Introduction to classical and modern test theory New York: Holt, Rinehart, and Winston. Cronbach, L. J. (1955). Text materials in modern educa tion: A comprehensive theory and platform for research Urbana: University of Illinois Press. Daley, E. M. (2000). The relationship between temperament type and se lf-reported health risktaking behaviors in selected co llege students. Dissertation, Un iversity of South Florida, College of Public Health.

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142 Davis, L. L., Weaver, M., Zamrini, E., Stevens, A., Kang, D-H., & Parker, C. R., Jr. (2004). Biopsychological markers of dist ress in informal caregivers Biological Research for Nursing, 6 90-99. De Frias, C. M., Tuokko, H., & Rosenberg, T. (2005). Caregiver physical and mental health predicts reactions to caregiving. Aging & Mental Health, 9 331-336. Dilworth-Anderson, P., Goodwin, P. Y., & Williams, S. W. (2004) Can culture help explain the physical health effects of caregiving over time among Afri can American caregivers? Journal of Gerontology: Social Sciences, 59B S138-S145. Dilworth-Anderson, P., Brummette, B. H., Good win, P., Williams, S. W., Williams, R. B., & Siegler, I. C. (2005). Effect of race on cultural justificati ons for caregiving. Journal of Gerontology: Social Sciences, 60B S257-S262. Different Drums: Kiersey.com. ( 1998). Retrieved June 15, 2004, from http://keirsey.com/Drummers.html Ekwall, A., Sivberg, B., & Hallberg, I. R. (2004). Dimensions of informal care and quality of life among elderly family caregivers. Scandanavian Journal of Caring Science, 18 239248. Eisdorfer, C., Czaja, S. J., Loewenstein, D. A., Rubert, M. P., Arguelles, S., Mitrani, V. B., & Szapocznik, J. (2003). The effect of a fa mily therapy and technology-based intervention on caregiver depression. The Gerontologist, 43 521-531. Ferrario, S. R., Cardillo, V., Vicario, F., Balzarini, E., & Zotti, A. M. (2004). Advanced cancer at come: Caregiving and bereavement. Palliative Medicine, 18 129-136. Fortinsky, R. H., Kercher, K., & Burant, C. J. (2002). Measurement and correlates of family caregiver self-efficacy for managing dementia. Aging & Mental health, 6 153-160. Foster, L., Brown, R., Phillips, B., & Carlson, B. L. (2005). Easing the burden of caregiving: The impact of consumer direction on pr imary informal caregivers in Arkansas. The Gerontologist, 45 474-485. Fry, P. S. (2001). Predictors of health-related quality of life perspectiv es, self-esteem, and life satisfactions of older adults following spousal loss: An 18-month follow-up study of widows and widowers. The Gerontologist, 41 787-798. Gaugler, J. E., Leach, C. R., Clay, T., & Newcom er, R. C. (2004). Predictors of nursing home placement in African Americans with dementia Journal of the American Geriatric Society, 52 445-452. Gignac, M. A., & Gottlieb, B. H. (1996). Caregi vers appraisals of efficacy in coping with dementia. Psychology and Aging, 11 214-225.

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151 BIOGRAPHICAL SKETCH Originally from Hawthorne, New Jersey, Tere sa A. Tozzo-Lyles grew up in Miami, Florida. She eventually moved to the North Central Florida area, which she has called home to her family and her beloved animals for more than 20 years. Teresa is of Italian and Cuban descent, and she speaks both E nglish and Spanish fluently. Teresa graduated from the University of Flor ida with a bachelors degree in newswriting and editing in 1981. After graduating, Teresa worked as a staff reporter on a small daily newspaper in the Central Florida area. She then returned to Gainesville and began work at the University of Florida, where she was employed for more than 10 years, including administrative work in the Department of Radiology, Shands T eaching Hospital at the University of Florida, until 1997, thus completing her first exposure to working in a health care setting. Teresa completed a masters degree in mass communicati on in 1994 from the Univ ersity of Florida, while working full time at Shands Teaching Hospita l. During the early 1990s, Teresa actively began volunteering in her church community. Teresa received a Ph.D. in health behavior fr om the University of Florida, in December 2006. Her interest areas include health communi cation, health behavior, and caregiving. She plans to continue her career in th e field of health behavior and h ealth education. Teresas family includes three loving daughters Leslie, Brianna and Morgann and a large supportive and extended family, as well as a network of caring friends.


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Title: Relationships between Temperament Type and Perceived Self-Efficacy among Informal Caregivers
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Copyright Date: 2008

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Source Institution: University of Florida
Holding Location: University of Florida
Rights Management: All rights reserved by the source institution and holding location.
System ID: UFE0016460:00001

Permanent Link: http://ufdc.ufl.edu/UFE0016460/00001

Material Information

Title: Relationships between Temperament Type and Perceived Self-Efficacy among Informal Caregivers
Physical Description: Mixed Material
Copyright Date: 2008

Record Information

Source Institution: University of Florida
Holding Location: University of Florida
Rights Management: All rights reserved by the source institution and holding location.
System ID: UFE0016460:00001


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Table of Contents
    Title Page
        Page 1
        Page 2
    Dedication
        Page 3
    Acknowledgement
        Page 4
        Page 5
        Page 6
    Table of Contents
        Page 7
        Page 8
        Page 9
    List of Tables
        Page 10
    List of Figures
        Page 11
    Abstract
        Page 12
        Page 13
    Introduction
        Page 14
        Page 15
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    Review of the literature
        Page 22
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    Methods
        Page 65
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    Results
        Page 90
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    Summary, conclusions, and recommendations
        Page 107
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    Appendices
        Page 120
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    References
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    Biographical sketch
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Full Text





RELATIONSHIPS BETWEEN TEMPERAMENT TYPE AND PERCEIVED
SELF-EFFICACY AMONG INFORMAL CAREGIVERS




















By

TERESA A. TOZZO LYLES


A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY

UNIVERSITY OF FLORIDA

2006


































Copyright 2006

by

Teresa A. Tozzo Lyles




























This document is dedicated to my parents, Carmen and Donald Tozzo;

my children, Leslie, Brianna, and Morgann Lyles;

and the Tozzo, Julian, and Clark Families









ACKNOWLEDGMENTS

"Wisdom is a gift of God," is the basis of a verse in the Old Testament's Book of Wisdom.

During the past five years, this quote has always proven true. Without my faith, and of course,

the prayers and support of family and friends, I would not have been able to complete this

miraculous endeavor.

First, I want to thank my Lord for His guidance and ultimate mercy, His wisdom is great

and His forgiveness is never ending.

My committee has been the backbone and driving force behind the success and completion

of this study. Without them, I would not have been able to put one foot in front of the other. Dr.

R. Morgan Pigg, Jr., my chair, has the patience of a saint and for that I thank him

wholeheartedly. He has encouraged me to continue on in the most caring and wise way. I thank

Drs. Kim Walsh-Childers and Christine Stopka, whom I have known for more than a decade, for

the spiritual guidance, the electric energy, the brainstorming on horseback, the experiences with

Sidney Lanier and Adapted Aquatics, and most importantly, the hugs. I thank Drs. Jiunn-Jye

Sheu and Virginia Dodd, for sticking with me and not letting me lose my footing when I was

slipping. I also appreciate that everyone overlooked my often quirky behavior.

My parents, Carmen and Donald Tozzo, brought me to this earth to experience all my gifts

and graces. Although I had to lose my wonderful father in 1999, he is the reason that I became

interested in social support and caregiving in the first place. From his perch in Heaven, he has

watched diligently over our family. He has guided me when I had no clue, and taught me to do

what makes me happy. My mother, who is my primary spiritual guide, has been my rock and my

light. I thank mommy and daddy for their love, gifts, and prayers. I also want to thank two

wonderful and special people who have been in my life since birth, my aunt and uncle, Blanca









and Frank Tozzo. They have always given me everything that two parents can, and for this, I

love and cherish them dearly.

I want to tell my three beautiful, dear and wonderful daughters, Leslie, Brianna, and

Morgann, that they will always be a piece of my own heart and soul. My children helped me to

get up and start every day, even when I did not have the energy or the will. I want to thank them

for their many smiles and tears. I want to thank my other family members, especially the two

most awesome and beautiful sisters anyone can possibly have, and who were supportive beyond

belief, Carmen and Elena I thank them for always being on my side, regardless if our opinions

differed. I also want to extend my special thanks to my niece and nephews Adam, Matt,

Miranda, and Danny Clark, and Mark and John Julian.

This paper is also dedicated to all my riding girlfriends who kept me addicted to riding and

endurance. I thank them for the drumming, the ride camp parties at the party tent and also

because they never let up on me for one minute, especially Kathy, Colette, Elaine, Brenda,

Roxanne and many others I have met on the trails. My moments of sanity would not have

transpired if it were not for my special best friend, my horse J. Darby, who has carried me for

many miles of joy and provides positive energy despite his odd behavior.

My two childhood friends, Mayte Rodriguez Regan and Felicia Garcia, helped me weather

the storm by just listening and helped me through many tearful days.

I want to send heart-felt thanks to two incredibly spiritual individuals who provided many

prayers, guidance, lunches, spiritual talks, and support Drs. Mary Hughes and Dr. Jane

Emmeree. I want to thank some incredibly wonderful individuals who allowed me to interview

them, before I began to write, about their insights, feelings, thoughts, feedback and reflections on

caregiving that came from their heart and soul. Without them, I would not have been able to









focus and guide my thoughts in the direction that became the final product for this dissertation -

Evelyn Cairns, Kathy Mladinich, Diane Gatsche, Keith Meneskie, and Dale Rimkunas.

I want to thank my incredibly large and supportive family at Invivo Corporation who have

been incredibly kind during the past five years, especially Dr. Randy Duensing, who was patient,

worked around my crazy school schedule, and helped me get to the end. I also want to thank my

work family from the Department of Radiology at Shands, especially Drs. Kate Scott and Jeff

Fitzsimmons who always supported and encouraged me in my academic endeavors.

I want to thank two wonderful people, John and Susie Bauer, who showed me what true

caring and caregiving is all about. Susie was always with me through these final and difficult

steps, and even though she left this Earth for a more ethereal place, her presence from above kept

me centered.

Finally, I want to thank the University of Florida and the Gator Nation for the honor of

graduating from this phenomenal academic institution.









TABLE OF CONTENTS

page

A C K N O W L E D G M E N T S ..............................................................................................................4

L IS T O F T A B L E S .........................................................................................10

LIST OF FIGURES ............ ...................................... .....................11

ABSTRAC T ................................................... ............... 12

CHAPTER

1 INTRODUCTION ............... ................. ........... .............................. 14

R e se arch P ro b lem ........................................................................................................1 5
R atio n a le ................... ...................1...................6..........
R e se arch Q u e stio n s ........................................................................................................... 17
D e lim ita tio n s ..................................................................................................................... 1 7
L im itatio n s ................... ...................1...................8..........
A s su m p tio n s ..................................................................................................................... 1 8
D efin itio n o f T erm s ................................................................................................................ 19
S u m m ary ................... ...................2...................0..........

2 REVIEW OF THE LITERATURE ........................................ ........ .........22

Informal Caregivers and Factors Affecting Their Roles ................. ................. ....22
Inform al C aregiving ................................................................22
Changes in the Caregiver R ole ................................................................. 23
M medical Costs of Caregiving ................................. .......................... .. ....... 26
H health R isks of C aregiving ......................... ... .................. .........................29
Relationship between caregiver health and level of caregiving ............................31
Care receivers with cancer/terminal illness................................. ........ 34
Care receivers w ith m ental illness .................................................. ..........36
Care receivers with dementia ........................................... ............... 37
Degree of Support and Caregiver Distress ..........................................39
Caregiving and health risks ........ ................................ .. ...... .. ... .. ...... .... 39
C aregivers and fam ily support .............................................................. ..41
Cultural and Ethnic Factors in Caregiving ..........................................42
T em peram ent T ype ............................................... ..........................................50
Self-Efficacy and Outcome Expectancies ................ ............................. ...............57
Self-Efficacy and Effect on Health and Disease ................................................... 57
Self-Efficacy Among Health Professionals.................................... 59
Self-E efficacy and C aregivers................................................................ ............... 60
S u m m a ry ................................... .............................................................................................. 6 3
Summary ............... ........................... ...............63











3 M E T H O D S ....................................................... 65

R e se a rc h D e sig n ............................................................................................................... 6 5
Research Variables ..................................... ..... .......... .......... .... 66
Instrum ents ........................... ....................................... ........ 67
C aregiving Self-Efficacy Scale ............................................... ............................ 68
Keirsey Tem peram ent Indicator II ............................................................................ 69
C aregiver P rofile Inform ation .............................................................. .....................7 1
P ilo t S tu d y ..........................................................................7 1
Prelim inary R review ................................................................ .... ... .....71
P ro c e d u re s ................................................................................................................. 7 2
Informed Consent .............. ....................................................... 74
F in d in g s ..................................................................................................................... 7 5
F in al S tu d y ................... ...................7...................7..........
In stru m entation ............................................................................... 77
P ro c e d u re s ................................................................................................................. 7 8
D ata A n a ly sis ............................................................................................................. 8 1
U n iv ariate P ro cedu res ............................................................................................... 82
B iv ariate A n aly se s ..................................................................................................... 8 2
M u ltiv ariate A n aly ses ................................................................................ 83
Instrum ent Reliability ..................................................................... ......... 84
S u m m ary ................... ...................8...................5..........

4 R E SU L T S .............. ... ................................................................90

Participant Characteristics ...........................................................90
Caregiver Group Type, Gender, and Race ...................................... ............... 91
Temperament Type, Age, Overall Health, and Duration of Care .................................91
Tem peram ent and Self-Efficacy ................................................................................ 93
R e search Q u e stio n s........................................................................................................... 9 4
R research Q u estion O n e ............................................................................................. 94
R research Q u estion T w o ............................................................................................. 9 5
R research Q u estion T three ........................................................................................... 96
Research Question Four ................................... .. .. .....................97
Research Question Five ..................................... ..................... .. ........ .... 98
Research Question Six ....................................................... .............. ... 98
Summary ....................................... .. ... .............................100

5 SUMMARY, CONCLUSIONS, AND RECOMMENDATIONS ............... .................107

S u m m ary ...................................................................................................................10 8
Conclusions..................................... ...................... 111
R ecom m endations.....................................................................................................117

APPENDIX

A LETTER OF INVITATION TO ORGANIZATIONS ..................... ................. ................... 120


8









B SOLICITATION POSTER FOR VOLUNTEERS IN PILOT STUDY.............................121

C ORGANIZATIONAL CONTACTS AND PROFILES ............................. ................122

D CAREGIVER SELF-EFFICACY SCALE ...... ... ..................... ......... .....................124

E KEIRSEY TEMPERAMENT INDICATOR II..................... ........................................126

F CAREGIVER PROFILE INFORMATION (DEMOGRAPHICS)..................................... 128

G SCRIPT FOR RECRUITING VOLUNTEER CAREGIVERS ........................... .........130

H PANEL OF CAREGIVERS TO REVIEW PROTOCOL .................................... ...............131

I UNIVERSITY OF FLORIDA INSTITUTIONAL REVIEW BOARD.............................134

L IST O F R E F E R E N C E S ......................................... .. .. .......................................................... 139

B IO G R A PH IC A L SK E TCH ........... ................................................................. ............... 151









LIST OF TABLES


Table page

2-1 Incremental caregiving hours and incremental cost of informal care attributable to
d em en tia ......................................................................................................6 4

2-2 Adjusted weekly hours and yearly costs of informal caregiving................... ..............64

3-1 Instrum ent specification table .......................... ................... ................................... 86

3-2 Keirsey Temparament Indicator II Item to total correlation................ ..................87

3-3 Caregiving Self-Efficacy Scale Item to total correlation..............................................88

3-3 Caregiving Self-Efficacy Scale Item to total correlation..............................................89

4-1 Distribution of participants by group type, gender, and race ................ ................102

4-2 Distribution by temperament type, age, overall health, and duration of care................03

4-3 Distribution of Gender by Temperament Type........................................................ 104

4-4 Distribution of Participants by Temperament Type ....................................................... 104

4-5 ANOVA Table Association between total score for Caregiving Self-Efficacy Scale
and K eirsey Tem peram ent Indicator II .......................................................... .... ........ 104

4-6 Spearman's rank correlation Association between total score on Caregiving Self-
Efficacy Scale and daily duration of care .............. .... .......................................... 105

4-7 ANOVA Table Association between total score for Caregiving Self-Efficacy Scale
and total duration of care in four duration ranges...................................................... 105

4-8 Spearman's Rank Correlation Association between total score on Caregiving Self-
Efficacy Scale and difficulty of care provided ............................................105

4-9 Spearman's Rank Correlation Association between total score on Caregiving Self-
Efficacy Scale and caregiver health...................................................... .................. 106

4-10 Stepwise multiple linear regression analysis of temperament, self-efficacy, total
duration of care, and relationship to care receiver..........................................................106









LIST OF FIGURES

Figure page

3-1 A N O V A E equation M odel ......................................................................... ...................89

3-2 Multiple Linear Regression Model ..............................................................................89









Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy

RELATIONSHIPS BETWEEN TEMPERAMENT TYPE AND PERCEIVED
SELF-EFFICACY AMONG INFORMAL CAREGIVERS

By

Teresa A. Tozzo Lyles

December 2006

Chair: R. Morgan Pigg, Jr.
Major: Health and Human Performance

This study examined the relationship between four temperament types, as defined by The

Keirsey Temperament Indicator II, and self-efficacy, as defined by the Caregiving Self-Efficacy

Scale, among informal caregivers. The study also examined relationships between self-efficacy

and daily duration of care, total duration of care, caregiver health, and degree of difficulty in care

among informal caregivers. Participants included 25 informal caregivers who completed the

instrument for the pilot study, and 160 who completed the final study. Participants in the study

were 18 years or older and caring part-time or full-time for someone 21 years of age or older.

Most caregivers were White (85.6%), female (82%), and older than age 50 (83.2%). Most male

and female caregivers were categorized under the temperament type of "Guardians."

No significant association existed in the level of self-efficacy among the four categories of

temperament types. However, using bivariate analysis methods (One-way ANOVA and

Spearman's Correlation), when comparing total self-efficacy score with total duration of time in

caregiving, caregiver health, and difficulty of care, significant associations existed (p=.017,

p=.020, and p=.045 respectively)

Results of a Stepwise Multiple Linear Regression Analysis of temperament, self-efficacy,

total duration of care, and relationship to care receiver showed significance in a negative









direction between self-efficacy and total duration of care, for "Artisans" (p=.029; coeff b=-

.882), if the care receiver was a friend (p<.001; coeff b=-2.136), and if the care receiver fit the

"Other" response option (p=<.001; coeff b=-1.652). No significance existed between level of

self-efficacy, the four temperament types, and duration of care provided by caregivers. If

caregivers were "Artisans" they were more likely to stay in the caregiver role longer, but if the

care receiver was either a friend or another relationship other than the ones listed in the survey

(i.e., hospice volunteer), caregivers were more likely to spend less time in the caregiver role.

Findings from this study will assist friends, family members, health care facility staff, and

formal health care providers in (1) assessing self-efficacy among caregivers with different

temperament types, (2) selecting methods to reach and assist informal caregivers in their

caregiving role more effectively, and (3) identifying peer advocates to assist individuals

identified as those just entering the caregiver role.









CHAPTER 1
INTRODUCTION

With the increase in the numbers of baby boomers reaching retirement age, the increase in

average life span, and the population of older Americans increasing dramatically, more spouses,

family members, and others provide care to older adults with a chronic or terminal illness.

Informal caregiving, defined as care provided by a family member, close friend, or volunteer

assistant, has been estimated at $196 billion annually (Arno, Levine & Memmott, 1999). During

the latter part of the 1990s, some 28.8% of persons aged 65 to 74 reported a limitation caused by

a chronic condition, and 54.4% reported at least one physical or medical disability (Wright,

1997; Arno et al., 1999).

Spouses represent more than 30% of caregivers, with an estimated 75% aged 65 and older.

Many younger family members also provide part-time care and support. Studies show that

caring for a spouse with a serious illness, dementia, or other physical ailments decreases the

caregivers' focus on their own preventive health smoking cessation, proper nutrition, regular

exercise, and stress reduction (Connell, 1994; Cameron, Franche, Cheung, & Stewart, 2002).

For example, after assuming caregiving responsibilities, 39% of informal caregivers ate less

nutritionally, 32% decreased their exercise regimen, and 43% increased the amount of smoking

(Wright, 1997).

The stress and burden of informal caregiving often become the responsibility of females in

the care receiver's family (i.e., mothers, daughters, daughters-in-law, wives), resulting in

negative emotional and physical consequences and health risks for female caregivers (Wright,

1997; Sawatzky & Fowler-Kerry, 2003). Female caregivers, specifically caregiver wives, report

the highest levels of depression in the caregiver population, typically ranging from 28% to 55%

in this population. The amount of time spent in the caregiver role influences health status,









evidenced by more than 60% of caregivers developing health problems after 18 months of

providing care for a family member or friend (Wright, 1997).

Many men and women aged 65 years and older are retired, but many others continue to

work part-time or full-time. Approximately 4.2 million people aged 65 and older remained in

the labor force in 2000 (U.S. Department of Health & Human Services, Administration on

Aging, 2001). These employed seniors continue to worry about their own health, yet more than

75% of caregivers do not focus on their own health behavior. Caregivers tend to engage more in

self-care than in seeking formal health services (American Association of Retired Persons,

2002). Female caregivers tend to seek personal health care only when absolutely necessary and

when it does not interfere with caregiving for their spouse (American Association of Retired

Persons, 2002).

Research Problem

In the health care environment, formal caregivers (i.e., physicians, nurses, counselors)

inquire about patient health status, but they seldom ask caregivers or care receivers about their

personal lives. However, personal characteristics of caregivers, such as temperament type, can

help explain environmental dynamics, social norms, and influence behavior patterns and stress

levels of persons receiving care. For example, although the individual characteristic of

temperament type generally remains stable throughout life, self-efficacy changes with a new life

role or life situation (i.e., becoming a parent or taking on the care of an ill family member).

Therefore, it is likely that caregiver temperament can predict levels of overall self-efficacy in the

care and well-being of the care receiver. Age, gender, time in the caregiver role, and overall

health of the caregiver may determine medical decisions made for the care receiver and in

general for the care giver. This study examined relationships between specific temperament

types and perceived self-efficacy of males and females in a caregiver role.









Rationale

Temperament, or the emotional disposition of an individual, rather than personality, relates

more closely to the emotional make-up of an individual, and can better predict and determine

personality, decision-making, and coping skills (Morris, 2000). The study of temperament dates

back to the ancient Greeks with the "Theory of Humors" in 5 B.C. (Heineman, 1995, para 2).

Contemporary studies on temperament and personality generally appear in business and

managerial settings, and also have been used to determine medical and dental student study

habits and the ability to work with and interact with others (Morris, 2000).

Following extensive research, Katherine Briggs identified four dominant personality

dimensions: Extroversion-Introversion (E-I), a person's focus of attention; Sensing-Intuition (S-

N), how one gathers information; Thinking-Feeling (T-F), decision-making process of the

individual; and Judging-Perception (J-P), interaction with the outside world.

The four main temperament types used by Keirsey include 16 sub-types (Myers-Briggs,

1985; Daley, 2000; Morris, 2000). Keirsey and Bates (1984) re-conceptualized the personality

types envisioned by Myers-Briggs into four temperaments artisans, guardians, idealists, and

rationals that focus on how individuals react to and perceive their surroundings. Based on the

analysis of the Myers-Briggs Temperament Indicator, Keirsey created a less complicated and

easier method for respondents (Heineman, 1995, para 23; Different drums: Kiersey.com, 1998,

para. 10).

Self-efficacy, a construct first conceptualized by Bandura as part of his Social Cognitive

Theory, reflects the belief that an individual can perform specific tasks or make intelligent

decisions. Self-efficacy, which varies according to situations and life events, also involves the

belief that individuals can complete a task or make the best decision for oneself or a loved one.

The Caregiver Self-Efficacy Scale, used in this study, was conceptualized for the purpose of









assessing self-efficacy in the caregiver role (Bandura, 1977; Steffen, McKibbin, Zeiss,

Gallagher-Thompson, & Bandura, 2002). Researchers only recently have begun to study self-

efficacy in the caregiver role (Steffen et al., 2002; Gignac & Gottlieb, 1996).

To date, few research designs have combined the three variables temperament, self-

efficacy, and caregiving. This study will determine if individual temperament type affects

perceived self-efficacy in the caregiver role (i.e., does one temperament type show higher levels

of self-efficacy than the other four types). Lack of such studies and the plausible relationship

between these variables establishes a need and provides the rationale for conducting this study.

Research Questions

1. Does a significant association exist between "Total Scale Scores" on the Caregiving Self-
Efficacy Scale and temperament type as determined by the Keirsey Temperament Indicator
II?

2. Does a significant association exist between "Total Scale Scores" on the Caregiving Self-
Efficacy Scale and daily duration of care provided by the caregiver?

3. Does a significant association exist between "Total Scale Scores" on the Caregiving Self-
Efficacy Scale and total duration of care provided by the caregiver?

4. Does a significant association exist between "Total Scale Scores" on the Caregiving Self-
Efficacy Scale and intensity/difficulty of care provided by the caregiver?

5. Does a significant association exist in self-efficacy scores as determined by "Total Scale
Scores" on the Caregiving Self-Efficacy Scale and caregiver health status?

6. Does a significant association exist among overall duration of care and temperament type as
determined by the Keirsey Temperament Indicator II, self-efficacy scores as determined by
"Total Scale Scores" on the Caregiving Self-Efficacy Scale, and relationship to care
receiver?

Delimitations

1. Participants, aged 18 and older, were volunteers from caregiver support organizations serving
the North Central Florida geographical area.

2. Data were collected in calendar years 2005-2006.

3. The Keirsey Temperament Indicator II was used to determine temperament type of
participants as caregivers.









4. The Caregiving Self-Efficacy Scale was used to determine perceived self-efficacy of
participants as caregivers.

5. The Caregiver Information Profile was used to obtain demographic information about
participants as caregivers.

6. Participants had served in a caregiving role for at least one month for someone with a chronic
or terminal illness as defined in this study.

Limitations

1. Volunteers who participated in the study may not represent all members of the organizations
involved in the study.

2. Data collected during calendar years 2005-2006 may differ from data collected during other
time periods.

3. The Keirsey Temperament Indicator II may not address all aspects of temperament among
participants as caregivers.

4. The Caregiving Self-Efficacy Scale may not determine all aspects of perceived self-efficacy
of participants as caregivers.

5. Demographic information obtained by the Caregiver Information Profile may not capture all
pertinent information about participants as caregivers.

6. The experiences of individuals serving as caregivers for different time frames or durations, or
for different types of illnesses, may differ from the experiences of participants in this study.

Assumptions

1. Volunteers who agreed to participate in the study were considered adequate to represent the
membership of their respective organizations.

2. Data collected during calendar years 2005-2006 were considered adequate for the purpose of
the study.

3. The Keirsey Temperament Indicator II was considered adequate to address temperament type
among participants as caregivers.

4. The Caregiving Self-Efficacy Scale was considered adequate to determine perceived self-
efficacy of participants as caregivers.

5. Demographic information obtained by the Caregiver Information Profile was considered
adequate to describe study participants as caregivers.

6. Individuals serving in a caregiving role for at least one month for someone with a chronic or
terminal illness as defined in the study were considered adequate as participants for the
purpose of the study.









Definition of Terms

Activities of Daily Living (ADLs). Emotional, spiritual, and medical needs provided by a

caregiver to a care receiver such as bathing and assistance with eating (Arno et al., 1999).

"Artisans." A temperament type under the Keirsey Indicators, Artisans are concrete in

communicating and utilitarian (practical) in implementing goals, and they can be highly skilled

in tactics, and finding multiple solutions to a problem. Artisans are gifted with tools, such as

language, a computer, thoughts or a paint brush (Artisans: Keirsey.com, 1996, para. 1;

Understanding the Four Temperament Patterns: The why, 2001, para, 7).

Care receiver. An individual who receives care from an informal caregiver.

Formal caregivers. Individuals in a health profession, such as primary physicians,

specialists, nurses, therapists, and counselors, who provide care for an individual in a formal care

setting such as a hospital, private practice, or medical facility.

"Guardians." A temperament type under the Keirsey Indicators. Guardians are concrete

in communicating and cooperative in implementing goals, and they can be highly skilled in

logistics (Heineman, 1995, para 23; Understanding the four temperament patterns, 2001, para 7).

"Idealists." A temperament type under the Keirsey Indicators. Idealists are abstract in

communicating and cooperative in implementing goals, and they can be highly skilled in

diplomatic integration (Heineman, 1995, para 21; Different drums: Kiersey.com, 1998, para.

10).

Informal caregiver. An individual voluntarily caring for another person (care receiver)

including friends or relatives. The individual needing care experiences health problems or

disabilities, and needs assistance with grocery shopping, bathing, eating, and dressing. Informal

caregiving includes care provided by spouses, children, other family members, and friends in a

home or other informal setting.









Instrumental activity of daily living (IADLs). Tasks performed by a caregiver for a care

receiver such as helping with finances and helping to prepare meals (Arno et al., 1999).

"Rationals." A temperament type under the Keirsey Indicators, Rationals are abstract in

communicating and utilitarian in implementing goals, and they can be highly skilled in strategic

analysis (Heineman, 1995, para. 20; Understanding the four temperament patterns: The why,

2001, para, 7).

Self-efficacy. A component or construct of several health behavior and health education

theories that addresses individuals' personal beliefs that they can perform a specific behavior or

action, or that they can overcome temptations, barriers, or negative behaviors created by others

in their environment (Steffen et al., 2002).

Social support. The process of seeking or receiving emotional, instrumental, medical, or

monetary provisions to increase an individual's self-esteem or efficacy. Social support can be

formal, as in support from health care providers, or informal as from family and friends.

Temperament. The emotional disposition of an individual which, in turn, directs

personality and choices in terms of behavior (Heineman, 1995, para 20; Understanding the four

temperament patterns: The why, 2001, para. 7).

Summary

As the U.S. population continues to age, more individuals are becoming informal

caregivers for family members and friends with chronic and terminal illnesses. Much of the

expenses that caregivers incur are out-of-pocket. Caregiver stress causes individuals to neglect

their own health, potentially creating more serious health problems for the future. While all

caregivers encounter stress, individuals respond differently to the initial experience and to the

experience over time. To date few studies have explored the relationships existing among









temperament, self-efficacy, and caregiving. This study examined those relationships among

individuals serving as informal caregivers in the northeast Florida geographical area.









CHAPTER 2
REVIEW OF THE LITERATURE

This study explored relationships among temperament, self-efficacy, and caregiving

among individuals serving as informal caregivers in the northeast Florida geographical area.

This chapter presents a review of literature related to these topics, factors that influence

individuals serving in the informal caregiver role, research that defines and describes each

temperament type, and research that examines self-efficacy in relation to disease as applied to

formal and informal caregivers.

Informal Caregivers and Factors Affecting Their Roles

Informal Caregiving

Informal caregiving refers to care provided by family and friends and represents a part of

our nation's multiple medical solutions and problems. Most individuals who become informal

caregivers assume the role due to a traumatic event, catastrophic illness, progressive chronic

illness (e.g., Alzheimer's Disease), or death of one parent where the surviving parent needs care.

Caregiving situations vary because of family dynamics (i.e., younger versus older

caregivers), disease diagnosed (i.e., heart disease versus Alzheimer's Disease), time spent in the

caregiving role, and intensity of care required. For example, intensity of caregiving varies from

driving the care receiver to physician appointments to changing a catheter bag. Apart from the

primary caregiver, caregiving often involves a circle of extended family or friends, who may first

notice subtle changes in the person needing care. Caregiver distress often results from erratic

behavior of care receivers rather than the disease itself (Hebert, Levesque, Vezina, Lavoie,

Ducharme, Gendron, Preville, Voyer, & Dubois, 2003; Small, McDonnell, Brooks, &

Papadopoulos, 2002; Gottlieb & Rooney, 2004; K. Meneskie, Personal Communication via e-

mail, February 18, 2005; D. Rimkunas, Personal Communication via email, February 25, 2005).









For example, subtle changes in someone with early onset of Alzheimer's Disease may include

intact long-term memory but poor short-term memory, confusion, fear, and anger at loved ones.

Emotional, spiritual, and medical needs, assistance with activities of daily living (bathing,

dressing, transferring in and out of bed, assistance with eating) and instrumental activities of

daily living (assistance with finances, preparing meals, housekeeping, laundry) increasingly are

met by family and friends, including assistance by minor children, adolescents, and young adults

who may live in the home with the care receiver. Although difficult to assess, the monetary

value of services provided by these caregivers is substantial. Researchers predict that the value

of family caregiving will exceed that of nursing home care by a 2:1 margin in the new

millennium (Arno et al., 1999; University of Texas, School of Nursing at Houston, Center on

Aging, 2005; D. Gatsche, personal communication, September 22, 2004; E. Cairns, personal

communication, September 22, 2004).

Changes in the Caregiver Role

While advances in health and medical care have increased the lifespan for adult citizens,

financial provisions for the elderly have not advanced at the same pace. When the Medicare

system took effect in the 1960s, medical costs were projected and established for those aged 50

and older. However, costs and provisions to assist those living into their 80s and beyond did not

fit into the long-term vision for the original system. The current health care system does not

meet the needs of elderly individuals who suffer from chronic and terminal illnesses (Arno et al.,

1999).

Nationwide, as the population ages, informal caregiving represents an essential asset.

More than 75 million baby boomers will be age 65 and older in the 21st century with the fastest

growing segment of the elderly population, those aged 80 and older, increasing from 122,000 at

the beginning of the 20th Century to more than 4.3 million in 2000 (Adler, 2002; Partnership for









Solutions, 2002; American Association for Geriatric Psychiatry: Health care professionals, 2004,

para. 1). In 1995, Florida's population of elderly of those age 65 and older made up 19% of the

total population the largest proportion of any state and the percentage of this population was

projected to increase to 26% of the total population by 2025. Therefore, Florida is a focus of

future concern for the state's health care system (Goulding, Rogers, & Smith, 2003).

Currently, between 40% and 80% of caregivers live with the care receiver. Almost half of

caregivers serve in that role for at least five years, with eight years as the average time spent in

caregiving because the progression of the care receiver's illness often is slow. The elderly

population, those aged 65 and older, numbered 35 million in 2000, or approximately 12.4% of

the U.S. population. The same population group is expected to increase by more than 20% by

2030, with about 70 million individuals aged 65 and older who will be alive in the U.S. by 2030

(Goulding et al., 2003; National Family Caregivers Association: Caregiving Statistics, 2000,

para. 1; U.S. Department of Health & Human Services, Administration on Aging, 2001; National

Family Caregivers Association: Family Caregivers and Caregiving Families 2001, 2001, pg. 4,

para. 2).

According to the National Family Caregivers Association (George & Kansas, 2001, para.

7), approximately 54 million Americans, or about 27% of the total population, were involved in

family caregiving in 1999, but less than 19% of caregivers felt they had received adequate

training to deal with the new role (National Family Caregivers Association, Family Caregivers

and Caregiving Families, 2001, pg. 12, para. 1). Because women's status in the home and

workplace has changed during the past 50 years, the impact of caregiving disproportionately

affects women's roles and duties. While 35% to 40% of men age 40 and older actively

participate in caregiving, women most often fill the role of primary caregiver. Approximately









70% of primary caregivers are women aged 60 or older, and 33% of female caregivers aged 36 to

50 are raising minor children while caring for an elderly parent or family member (National

Family Caregivers Association, Caregivers Association, Family Caregivers and Caregiving

families, 2001, pg. 4, para. 4; National Family Caregivers Association, Education and Resources,

Yes, I am a Family Caregiver, Caregiver Resource, 2002, para. 7).

The number of individuals with chronic conditions also continues to increase. In 2000,

approximately 50 million individuals with terminal or chronic illnesses received some type of

care from a family member or friend. By 2030, an estimated 150 million people, or 48% of the

population, will be living with a chronic condition (U.S. Department of Health & Human

Services, Administration on Aging, 2001; Partnership for Solutions, 2002). Of individuals aged

65 and older, 80% will have at least one chronic illness, and 50% will have two or more

(Goulding, et al., 2003). Currently, about 20% of individuals in the U.S. have multiple chronic

illnesses. Most of the emotional and financial burden of caring for the chronically ill falls

outside the health care system. The chronically ill, who often need long-term care, may receive

mixed advice about medications, treatments, and health care regimens from formal caregivers

(physicians, nurses), thereby increasing the cost of managing their illness and increasing the

stress on informal caregivers (Partnerships for Solutions, 2002).

Early in the caregiver role, depending on the type (chronic versus terminal) and duration of

disease or illness, caregiver responsibilities can be overwhelming. When a care receiver has been

diagnosed with cancer, researchers report that the months immediately following an initial

hospitalization for surgery or treatment prove the most difficult. However, caregivers for those

with dementia or Alzheimer's Disease report that stress increases as the disease progresses

(Weitzner, Jacobsen, Wagner, Friedland, & Cox, 1999; Alzheimer's Caregiver Support Online,









2002, para. 6). In a 1997 study of caregivers, 37% reported they received no paid assistance,

35% of caregivers indicated they did not find enough time for themselves, and 29% needed

assistance in managing physical or emotional stress (Wagner, 1997; National Alliance for

Caregiving & AARP, 2004, pg. 18, para. 1).

On average, 41% of caregiving duties require "constant care," which means at least eight

hours of daily full-time care. Family caregivers often experience depressive symptoms,

characterized by anxiety, which is usually accompanied by a decrease in caregiver healthy eating

and exercise habits. The National Family Caregiver Association (2001) reports a decline in

healthy eating behavior from 70% to 59%, and a decline in regular exercise from 61% to 30%,

from before becoming a caregiver to after becoming a caregiver. Caregivers also reported a

decline from 70% to 47% in consulting a physician about their own health (National Family

Caregivers Association, Who are family caregivers?, 2001, para. 5). Caregiver quality of life can

be as bad as, or worse than, that experienced by the care receiver, especially when the caregiver

also experiences chronic or terminal illness. Caregivers may experience an increase in emotional

and financial difficulties as the disease or illness of the care receiver progresses. Many

caregivers are forced to decrease their workload or quit work entirely to manage caregiver

responsibilities (Weitzner, et al., 1999).

Medical Costs of Caregiving

Society generally underestimates and under-appreciates the value of caregiver time, lost

wages, and medical costs for their own medical needs. As an example of government attempts to

address this need, the Clinton Administration proposed a $6 billion package for long-term care

solutions of chronically ill patients and their families.

The U.S. spends more than any other country on the health care of individuals 65 and older

($12,100 per person). Currently, health care by informal caregivers represents an estimated $196









billion (approximately 18%) of total national health care spending, currently at about $1 trillion.

However, informal caregiving is not calculated in the national health care budget. Caregiver

financial burden increases as the disease/illness progresses and as caregiver demands increase

(Goulding et al., 2003; Chou, 2000; Yun, Rhee, Kang, Lee, Bang, Lee, Kim, Kim, Shin, & Hong,

2004; Arno, et al., 1999).

Florida has traditionally been known as a state with a large elderly population. Many

elderly people retire to the state, thus requiring medical care and attention for end-of-life years.

Florida ranks fourth in the nation for number of informal caregivers (more than 1.6 million),

fourth for annual informal caregiver hours per billion (1.7), and fourth for annual dollar value of

informal caregiver hours (about $15 billion). California (first), Texas (second) and New York

(third) are ranked above Florida in all three categories (National Family Caregivers Association

and the Albert Einstein College of Medicine, 2002).

Costs of medication and treatment for the chronically ill are often paid out-of-pocket.

Expenses are absorbed by family members or friends who eventually become informal

caregivers. These unexpected expenses can become part of the total caregiving burden (Scholte

op Reimer, de Haan, Rijnders, Limburg, & van den Bos, 1998). Out-of-pocket expenses

multiply incrementally with the number of chronic conditions, such as $130 per year for

prescription drugs for one chronic condition versus $930 annually for five or more conditions

(Partnership for Solutions, 2002). Some national estimates of the value of annual home care

services provided by caregivers are close to $200 billion (National Family Caregivers

Association, Who are family caregivers?, 2004, pg. 2, para. 4).

Caregiving affects the U.S. health care system and caregivers' personal health. Caregivers

with chronic illnesses report higher levels of stress and have a 63% higher mortality rate than









same-age counterparts who are not caregivers (Schultz & Beach, 1999). Individuals who

provide care in excess of 30 hours a week experience more symptoms of stress and anxiety. Two

studies reported that intensity and difficulty of care required by cancer and dementia patients

dictates the number of weekly hours and amount of out-of-pocket medical and other costs

provided by family to the sick individual (Hayman, Langa, Kabeto, Katz, DeMonner, Chernew,

Slavin, & Fendrick, 2001; Langa, Chewnew, Kabeto, Herzog, Ofstedal,l Willis, Wallace, Mucha,

Straus, & Fendrick, 2001).

Alzheimer's Disease is probably the most expensive long-term disease to treat, with

current annual expenses estimated as high as $29.1 billion, and with approximately 50% of those

with Alzheimer's Disease or dementia living at home (Small, et al., 2002; Hebert, et al., 2003).

In addition to Alzheimer's Disease, other forms of dementia, such as those associated with stroke

and Parkinson's disease will create a greater need and increased stress among informal

caregivers (Vitaliano, Zhang, & Scanlan, 2003). Caregivers for those with Alzheimer's Disease

miss about five days of work during a six-month period and average about 85 hours of care each

week (85 + 60.2). Caregivers for those with more severe symptoms miss correspondingly more

work. Researchers in this study found that intervention (home health care assistance) and its

costs depend on stage of the disease and other factors such as when interventions are

implemented (Small et al., 2002, p. 323).

Within the past few years, researchers have assessed benefits and costs of informal

caregiving. Results showed that as time spent in the informal caregiver role increased, the

"marginal benefits" decreased and the "marginal costs" increased. When asked what type of

assistance they would most appreciate, most caregivers indicated that they needed assistance

with housework (Smith & Wright, 1994; van den Berg, Brouwer, Exel, Koopmanschap, 2004).









Lost income of caregivers, out-of-pocket expenses, and additional health care costs figure

into estimating total costs of informal caregiving for someone with dementia (Moore, Zhu, &

Clipp, 2001). Researchers calculated the total annual costs of informal care for dementia patients

coming from lost wages of caregivers at $10,709 and the cost of caregiver time at $6,295. These

calculations included assistance with all types of services (i.e., Activities of Daily Living and

Instrumental Activities of Daily Living) provided to care receivers (Moore, et al., 2001).

A study of Korean caregivers caring for those with cancer, showed that caregivers' quality

of life decreased incrementally with the amount of family savings that were depleted, which

included loss of a job or other source of income (p<0.0001) (Yun et al., 2004).

In a study based in Arkansas that explored easing caregiver burden, nursing home

placement, and caregiver-care recipient relationships, researchers found that caregivers in the

treatment group, who were paid by the researchers to participate in the study, seemed to be less

stressed and reported better physical and emotional health than those who were not paid (Foster,

Brown, Phillips, & Carlson, 2005).

Health Risks of Caregiving

Many factors influence the health behavior and health status of caregivers, including the

type and severity of the care receiver's illness and the physical and mental restrictions of both

caregiver and care receiver. About one-third of caregivers of an elderly individual will suffer

some physical or emotional distress, more than 10% will have some mental or health problems,

and many will also experience chronic fatigue (National Alliance for Caregiving & AARP, 2004;

Foster et al., 2005; Teel & Press, 1999).

Caregiver wives report higher levels of depression and lower levels of self-esteem than

caregiver daughters or daughters-in-law (Collins & Jones, 1997; Pinquart & Sorensen, 2005).

Rates of depression among caregiver women range from 28% to 55% versus 14% to 16% among









the general population of women. While male and female caregivers differ in their coping

mechanisms, caregiver wives are usually more emotionally involved than caregiver husbands.

As time progresses, women develop and adopt more "problem-solving coping strategies similar

to those used by husband caregivers" (Wright, 1997, p. 272). Coping strategies in the caregiver

role include drawing on a network of individuals for social support and using different methods

and sources to learn more about the disease or disorder. However, during the course of a chronic

disease, available social support can decline over time (Glanz, Reimer, & Lewis, 2002).

Compared to depressed individuals in the general population, most caregivers report fewer

visits to physicians and other health care professionals, greater use of psychotropic medications

for anxiety, use of alcohol and tobacco as coping mechanisms, and eating and exercising less

after assuming the caregiver role (Collins & Jones, 1997; Wright, 1997). Even when a caregiver

had previously discussed his or her mental health concerns before the care recipient's diagnosis,

less than half (46%) were willing to use mental health services and, as stated above, used more

drugs (Vanderweker, Laff, Kadan-Lottick, McColl, & Prigerson, 2005). However, some

caregivers increase the number of self-visits to a physician, and increase the amount of drugs

used, perhaps to restore a balance in healthy sleeping, and decrease exercise and leisure time

(Wright, 1997).

Placement of the care receiver in a caregiving facility, such as a nursing home, may

precede a significant decline in both the care receiver's and the caregiver's health. The decline

can include lack of sleep and improper rest. Caregivers with more health problems are more

likely to serve less time in the caregiving role. The study also found that individuals caring for

those with a form of dementia (i.e., Alzheimer's Disease) are at greater risk of declining health

(Scharlach, Midanik, Runkle, & Soghikian, 1997).









The progression of symptoms and overall decline in health of the care receiver may leave

caregivers feeling helpless and confused, especially when the caregiver's own health begins to

decline, and as work and other family obligations increase (Scharlack, et al., 1997; K. Mladinich,

personal communication, August 25, 2004).

Once a caregiver is placed in assisted living, spousal caregivers continue to function in a

caregiver role by visiting the spouse almost daily. Not surprisingly, the health of spousal

caregivers can continue to decline even after their significant other enters a care facility because

this population of caregivers tend to be older than age 65 (Wright, 1997). Most care recipients

with dementia are institutionalized, on average, from two to six years after diagnosis (Mausbach,

Coon, Depp, Rabinowitz, Wilson, Arias, Kraemer, Thompson, Lane, Gallagher-Thompson,

2004). However, most studies on caregivers and care recipients with dementia focus on the

Caucasian population. This observation about the literature on caregivers is relevant because

many Caucasian caregivers and care receivers have access to better health care, and a different

type of support system than Hispanic or African American caregivers. Minority caregivers tend

to keep family members in the home longer even though the care recipient may have more

debilitating illnesses. Therefore, other studies should focus on a culturally diverse population to

assist with needs and demands of caregivers helping with those with dementia.

Relationship between caregiver health and level of caregiving.

Other studies show that individuals providing moderate to high levels of caregiving, when

compared to non-caregivers, are less likely to maintain adequate health behaviors or use

preventive services, such as remembering physician's appointments, getting prescriptions

refilled, and getting adequate rest (Burton, Newsom, Schultz, Hirsch, & German, 1997).

Those providing a high level of care reported not getting enough sleep (24%), not getting

enough exercise (29%), and not resting adequately when sick (14%) were all significant at the









p<.0001 level. Those providing higher levels of care also were more likely to forget to take

medications (19%, p<.001) and less likely to make medical appointments (7%, p<.05). The

relationship between perceived sense of control and personal preventive health behaviors was

significant at all levels of caregiving and at both levels for sense of control under variables such

as "not getting enough rest" (P<0.0001) (Burton, et. al., 1997). For the population in this study,

confidence, which is defined as sense of control, in the caregiver role seems to influence health

behaviors for the caregiver when a caregiver's feelings more powerless, their personal care

decreases.

Even if care receivers have insurance that provides long-term care, studies confirm that

approximately 50% of caregivers show no change in the care they provide, indicating that even

with formal caregiving options, the informal caregiver continues to provide essential assistance

to the care receiver. Essential assistance included daily visits to the care receiver, feeding,

bathing, dressing, and providing prescription medications. These out-of-pocket expenses are part

of the overall caregiver burden and contribute to caregiver stress (Cohen, Miller, & Weinrobe,

2001).

A five-year study assessing transitions in caregiver roles found that about 50% experienced

some type of change, including the death of a spouse or a spouse being placed in a long-term

facility (Burton, Zdaniuk, Schulz, Jackson, & Hirsch, 2003). Individuals who changed from

non-caregiver status to heavy caregiver status involving meeting the most basic physical

functions showed more depressive symptoms and were more likely to exhibit unhealthy

behaviors (5.59 vs. 6.94, p < .01) (Burton, et al., 2003).

Schultz and Beach (1999) explored the association between caregiving and mortality in

sub-groups of caregivers "physiologically compromised and exposed to varying levels of









caregiving strain" (p. 2216). After four years of follow-up, deaths among those providing care

and those who had reported physical strain (31 of 179, 17.3%) were significant (p<.025).

When assessing stress levels pre- and post-bereavement among caregivers, those in the

control group (non-caregivers) recorded higher post-bereavement rates of depression.

Depression remained unchanged for caregivers with high levels of strain during the caregiver

role. African-American caregivers had significantly lower depression symptom scores than

Whites at both pre-bereavement and post-bereavement (Schultz, Beach, Lind, Martire, Hirsch,

Jackson, & Burton, 2001).

Another study (N=52) measured socio-demographic, physical, and psychosocial

characteristics of family caregivers for stroke survivors including satisfaction with health care

resources, social support, activities of daily living, and instrumental activities for daily living

(Grant, Weaver, Elliott, Bartolucci, & Giger, 2004). The study found Caucasians at about four

times higher risk for depression compared to their minority counterparts (i.e., African American

and Hispanic individuals). Results suggest that caregivers who experience a decrease in their

"sense of belonging with others" may be at higher risk of distress in the weeks after the care

receiver returns home from a hospital stay from stroke-related complications (Grant et al., 2004).

In a study exploring predisposing, enabling, and need components of caregivers' use of

care services, caregivers aged 65 years or older showed higher depressive symptoms and used

more formal services, such as in-home care services than younger caregivers (Bookwala,

Zdaniuk, Burton, Lind, Jackson, Schulz, 2004). Perceived sense of mastery of formal services

related positively to self-efficacy among caregivers (Bookwala et al., 2004).

With chronic illnesses, such as heart disease or heart failure, caregiver quality of life may

be compromised. Caregivers, and care receivers with heart failure, reported their overall quality









of life, measured as "sense of well being." Care receivers rated their quality of life lower than

their caregivers prior to being hospitalized (p-0.035) (Luttik, Jaarsma, Veeger, & van

Veldhuisen, 2005). Caregiver quality of life was seen as fairly stable during the course of the

study, while care receiver quality of life fluctuated with the decline of health and their

subsequent stabilization.

Care receivers with cancer/terminal illness.

Losing a family member to a terminal illness is a stressful life event, but if an individual is

a caregiver of the terminally ill family member, the time leading up to the loss can be an added

stressor as well. End of life issues and experiences may involve hospital care and Hospice care

(Haley, LaMonde, Han, Burton, & Schonwetter, 2003).

Caregiver distress was examined as it related to amount of time spent assisting advanced

cancer patients (those estimated to have less than six months of life remaining). Caregivers with

less than a high school education reported significantly more depression, more tension, and more

total mood disturbances. In general, caregivers of cancer patients experience more physically

debilitating symptoms in addition to depression (Cameron et al., 2002).

Caregivers of patients with terminal illness were recruited for a study on bereavement

(Ferrario, Cardillo, Vicario, Balzarini, & Zotti, 2004). Caregivers who were asked to complete

an instrument with scales that measured caregiver strain, cognitive function, and life satisfaction,

were assessed at three, six and 12 months after the death of their loved one. Results showed that

caregivers who perceived more "emotional burden" were more likely to indicate less satisfaction

with life overall. Satisfaction with life decreased significantly from three months to 12 months

(P=0.001). The relationship the caregiver had with the spouse was also a predictor of

"bereavement maladjustment after 12 months" (P< 0.001) (Ferrario et al., 2004) if the









caregiver reported a more positive relationship with their spouse, they tended to report higher

levels of life satisfaction post-bereavement.

In another study, caregivers were recruited to assess the impact for caregiving of a

terminally ill individual who recently had died (Brazil, Bedard, Willison, & Hode, 2003).

Caregivers were asked to identify ADLs and how long they had provided assistance for specific

tasks. Most of the caregivers in this study were female, the spouse of the patient, lived in the

home with the care receiver, and did not work outside the home. The number of visits to a

general practitioner and caregiver age were significant determinants of high caregiver burden

(p=0.043).

Caregivers tending to terminally ill individuals, especially those in palliative care or

hospice care, experience different levels of distress and seek different levels of support. In

palliative care, caregivers anticipate the death of their loved ones. When caregivers were

presented with a support intervention (i.e., learning how to cope and exchanging information

with others and in seeking formal or informal support), caregivers who were employed full-time

were less likely to accept the support intervention (P=0.006) (Harding, Higginson, Leam,

Donaldson, Pearce, George, Robinson, & Taylor, 2003).

Spousal caregivers of patients with end-stage lung cancer and dementia (diagnosed with

less than six months of life remaining) were interviewed to assess daily duration of care, total

time in the caregiving role, caregiver self-reported health, self-reported (perceived) benefits of

caregiving, and level of care receiver impairment (i.e., abilities to perform ADLs and IADLs)

(Haley et al., 2003). The only variable that was significantly associated with caregiver

depression was behavioral problems of the care receiver (p<0.05). No other variables, including









patient diagnosis and hours of care each week, were significantly associated with caregiver

stress.

Caregivers for patients diagnosed with metastatic breast cancer were assessed for financial

burden for palliative and other treatment (Grunfeld, Coyle, Whelan, Clinch, Reyno, Earle,

Willan, Viola, Coristine, Janz, Glossop, 2004). Caregivers who were depressed at the start of the

"terminal" period, as defined in this study, were equally as depressed at the start of the palliative

period (p=0.02). The amount of money spent on prescription drugs was the best indicator of

financial burden among caregivers, especially those without additional health insurance coverage

(p=0.04) (Grunfeld et al., 2004).

Similarly, researchers studied caregiving during the terminal phase of illness for the care

receiver (Brazil, et al., 2002). The last three months of life proved to be the most critical due to

the need for increased patient care and an increase in the need for outside services, such as

nursing care assistance. Caregiver burden was attributed to the impact "caregiving has on the

personal health of caregivers and on the extent to which caregiving interrupts the usual activities

of the caregiver" (Brazil et al., 2002, p. 381).

Among caregivers with partners who were cancer patients, the impact of caregiving on

disrupted schedules and caregiver self-esteem decreased in the six months following the care

receiver's discharge from a healthcare facility. As the care receiver's health improved, so did the

health of the caregiver (Nijboer, Tempelaar, Sanderman, Triemstra, Spruijt, van den Bos, 1998).

Care receivers with mental illness.

Those caring for individuals with any kind of mental illness may carry the stigma of their

loved one and experience difficult care management, which include factors such as caring for an

older individual with mental illness and living in the home with the care receiver (Groff, Burns,

Swanson, Swartz, Wagner, & Tompson, 2004).









Caregivers of care recipients diagnosed with schizophrenia were assessed for stress and

stress-related symptoms. Interviews were provided at baseline, then four, eight and twelve

months after baseline. Unlike most caregiver studies, almost half (41%) of the caregivers were

male and 63% were Black. Results of the study indicate that those who lived with the care

recipient were more likely to have higher self-reported levels of strain (p<0.001), and the more

days the care receiver spent in outpatient care, the less strain on the caregiver (Groff et al., 2004).

Care receivers with dementia

Well-documented studies of caring for someone with dementia have shown that the

caregiver is at greater risk of having a psychological disorder than those in other caregiving roles

and in the same age-group population (McConaghy & Caltabiano, 2005; Covinsky, Newcomer,

Fox, Wood, Sands, Dane, & Yaffe, 2003). Dementia is a debilitating disease with an often long-

term progression. While care receivers may be physically capable, their mental health

deteriorates gradually. Acknowledging the risks to caregivers of dementia patients is important

for clinicians and formal caregivers because mental and physical debilitation is complex and

affected by many factors (De Frias, Tuokko, Rosenberg, 2005; Covinsky et al., 2003).

Caregiver wives of Alzheimer's Disease patients showed lower overall morale than

caregiver husbands (Collins & Jones, 1997; Wright, 1997; Eisdorfer, Czaja, Loewenstein,

Rubert, Arguelles, Mitrani, Szapocznik, 2003). In general, caregivers of those with any form of

dementia (i.e., Alzheimer's Disease) are more likely than non-caregivers to experience higher

levels of depression, anxiety, and poorer health (Mausbach et al., 2004).

Caregivers and care receivers who had been diagnosed with dementia were assessed for

health in the "paired relationship." Caregivers who reported higher "caregiver burden" were

more likely to be in poorer psychological health (P < 0.05) (McConaghy & Caltabiano, 2005).









In a longitudinal study of individuals caring for someone diagnosed with dementia,

researchers examined the use of a physician by caregivers (Baumgarten, Battista, Infante-Rivard,

Hanley, Becker, Bilker, & Gauthier, 1997). Caregivers need psychiatric assistance 10 times

more often than non-caregivers (p=.008), but they did not necessarily seek physician care at a

higher rate than non-caregivers.

Caregivers' self-reported health status and the relationship between caregiver and care

receiver mental health, were assessed to compare demands on caring for older individuals with

dementia (De Fries et al., 2005). Older caregivers had higher self-esteem and had more support

from family members. Caregivers who were older, physically healthier, and who reported fewer

health issues from being a caregiver, were more likely to report having poorer health if the care

recipient was male (p<0.05) (De Fries, et al., 2005).

Few studies have assessed the characteristics of both caregivers and care receivers with

dementia to predict depressive symptoms among the caregivers. Patient traits associated with

caregiver depression include less education, being younger, being male, being Hispanic, and

depending more on the caregiver for Activities of Daily Living (ADLs) (P<.001). Caregiver

characteristics significantly associated with their depression include their relationship to the care

receiver (significant for being a wife versus husband), hours spent caregiving each week, and

caregiver health (Covinsky et al., 2003). Hispanic caregivers displayed higher rates of

depression, possibly due to expectations of the caregiving role, denial about care receiver

disease, and language barriers with formal care providers.

Wackerbarth and Johnson (2002) studied essential information and support needs of family

caregivers for individuals with Alzheimer's Disease and dementia. Respondents reported a need

for information: general information (i.e., how to plan), diagnosis and treatment information









(i.e., results of tests, help with treatment decisions), and legal information relating to financial

issues (i.e., health plan coverage, legal terms). When compared to men, women used more

emotion-focused coping strategies, which are associated with higher levels of negative health

outcomes (Wackerbarth & Johnson, 2002). Also, female caregivers experienced more stress and

poorer overall health than male caregivers (Nijboer, Triemstra, Tempelaar, Mulder, Sanderman,

& van den Bos, 2000; Dilworth-Anderson, et al., 2004).

Degree of Support and Caregiver Distress

Caregiving and health risks

Biochemically and psychologically, caregiving produces a great deal of stress. One study

determined that individuals under stress have lower antibody response to vaccinations and lower

counts of "natural killer cell activities" (Davis, Weaver, Zamrini, Stevens, Kang., & Parker,

2004, p. 91). When looking at biochemical changes, specifically cortisol production in

caregivers of individuals with Alzheimer's Disease, significant differences occurred between

those in a non-caregiving role compared to caregivers (P=0.006). Cortisol levels were

determined through saliva samples in caregiver wives. Approximately 46% of total caregiver

wives were taking psychotropic medications, but 80% of total caregiver wives said their overall

health was "good" or "excellent" (Davis et al., 2004).

Caregiving especially can affect functioning of the immune response and heart rate

reactivity, blood pressure levels, and mortality among some older spousal caregivers (Dilworth-

Anderson, Goodwin, & Williams, 2004). In a meta-analysis that assessed stress hormones as a

measure of physiological function in caregivers, researchers found that some hormones affect

cardiac functioning (cortisol, epinephrine, norepinephrine), and others affect immune response

(norepinephrine, prolactin) (Vitaliano et al., 2003). Therefore, the longer individuals are in the

caregiving role, the longer they are exposed to stress hormones that affect cardiac and immune









function. Some studies have defined primary stressors as those associated with the health of the

care recipient, while secondary stressors were associated with being a caregiver apart from the

caregiving role (i.e., dealing with workplace situations and dealing with family members)

(Amirkhanyan & Wolf, 2003).

With the growing number of individuals living well into their 80s and more individuals

separated from their elderly family members, more older individuals are caring for those in their

same age group or even older (Ekwall, Sivberg, & Hallberg, 2004). In a Swedish research study

on older informal caregivers (age, M=81.8 years), researchers found that women who had higher

levels of involvement in supervising care for another individual (p<0.001), and assisting with

Instrumental Activities of Daily Living (IADLs) was positively associated with better quality of

life for the older caregiver (Amirkhanya & Wolf, 2003).

Caregiving compromises one's mental and physical health, including depression, low self-

esteem, and possible substance abuse, all of which can be indicators of potential frustration and

possible care receiver abuse. In a study assessing potentially harmful behavior (Beach, Schultz,

Williamson, Miller, Weiner, & Lance, 2005), informal caregivers and their care recipients were

asked how often help was needed. For example, caregivers were asked how often they had to

provide assistance with Activities of Daily Living (ADLs) or IADLs to the care recipient, and the

care recipients were asked how often they asked for assistance for the same tasks (Beach et al.,

2005). Care recipients who reported needing more ADL and IADL assistance and who were in

poorer health were more likely to be the recipients of harmful behavior from the caregiver (i.e.,

yelling, insulting) (Beach et al., 2005).

Logsdon and Robinson (2000) suggested five essential characteristics of social support that

may influence one's ability to effectively match recipient needs and expected support from









someone with whom the caregiver may share an intimate relationship. Negative support or

nonsupport among women caring for those with dementia had a negative impact on caregiver

health. Women cited "unmet expectations" for support as the "most pervasive difficulty"

(Neufeld & Harrison, 2003, p. 327), and their responses were influenced by type of relationship

between caregiver and helper. Negative support from family or friends included conflict

between the caregiver and others in determining the health status of the care receiver and

criticism of caregivers' decisions in caring for care recipients.

Caregivers and family support

Family systems and family dynamics play an important role in determining caregiver

emotional function (Mitrani, Feaster, McCabe, Czaja, & Szapocznik, 2005). Using the

"structural family theory," Hispanic and non-Hispanic caregivers (N=177) were assessed at three

intervals after starting in the caregiver role (6, 12, and 18 months) based on consistent and

repeated patterns of interactions within the family unit. Researchers tested items for an effective

measure of family and caregiving. Cultural dynamics plays an important role in the Hispanic

population, especially those involved in caregiving. Enmeshment, or the interference and

boundary violations between family members, is an example of cultural dynamics assessed in

this study. Hispanic family members often use enmeshment as a "protective factor," so as not to

deal with certain issues as a caregiver, such as stress levels and difficulty of care it is assumed

that Hispanic men and women will care for sick and elderly family members, regardless of their

social or economic status (Mitrani et al., p. 452).

Caregiver employment status outside the home and informal caregiver burden were

predictors of caregivers' level of mental health (Cannuscio, Colditz, Rimm, Berkman, Jones, &

Kawachi, 2004). The correlation was observed among women who do not work outside the

home, who were caring for a spouse, and had high levels of stress. Similarly, the association









between women who do work and provide spousal care were also at high stress levels. Stress

levels were not as high among caregivers of parents. The group with the highest risk for

depression was women who provided more than 36 hours a week of care and who had few social

ties (Canniscio et al., 2004).

One predictor of caregiver burden is the ease with which care recipients can follow and

adhere to health care regimens. Perceived pressure in the caregiving role correlated with "more

psychological distress" (Pott, Deeg, Van Dyck, & Jonker, 1998, p. 47). In a similar study on

caregiver burden and how well care receivers gave attention to their own health care, a positive

correlation was found between caregiver's personal resources, self-esteem, general social

support, and caregiver burden (Greenberger & Litwin, 2003). Studies assessing those

individuals who cared for Alzheimer's disease patients showed that, when outside support

increased in dealing with patient problem behavior, negative reactions to the behavior by the

caregiver decreased (Hebert, et al., 2003).

In a study of patient-caregiver groupings, with patients in advanced stages of cancer,

researchers found that "elevated levels of anxiety in patients" were directly associated with

"higher levels of anxiety in their caregivers" and that caregivers felt they were concerned for

their mental health after the cancer diagnosis of the patient (Harding, Higginson, & Donaldson,

2003, p. 640; Vanderwerker, et al., 2005). This study showed a direct relationship between

decline in informal caregiver psychological health and increased caregiver burden with patient

pain and anxiety.

Cultural and Ethnic Factors in Caregiving

Research on caregivers has traditionally focused on White (Caucasian) individuals.

Minorities in the United States experience at least twice the rate of chronic illness, including

dementia, possibly due to the lack of adequate health care, financial resources, medical choices,









and information about their care (Neary & Mahoney, 2005). African Americans historically

have extended the caregiving role to relatives and friends outside the immediate family to

survive "generations of racial oppression and economic hardships" (Hamilton & Sandelowski,

2003, p. 665). Cultural rituals, religious experience, and traditions (i.e., normative experience)

affect those in the caregiver role and those who require care (Koffman & Higginson, 2003; Roff,

Burgio, Gitlin, Nichols, Chaplin, & Hardin, 2004).

When compared to their White counterparts, African Americans have a lower life

expectancy and were more likely to be in poorer physical health (69.6 years for African

Americans versus 76.4 years for Whites) (Kim, Bramlett, Wright, & Poon, 1998; Pinquart &

Sorensen, 2005). Minority caregivers are also more likely to be younger, single, an adult child, a

cousin, a grandchild, provide longer care time in the home, and be female (Pinquart & Sorensen,

2005; Neary & Mahoney, 2005).

When dealing with those in the caregiver role, Hispanics and African Americans

demonstrate different health communication issues and barriers than Caucasians. Hispanics

experience language barriers with those who are formal health care providers, lack of

information about the illness/disease, and issues involving acculturation. Proficiency of

caregivers in using the English language was significant if the elderly disabled person receiving

care attempted to use formal health care services (Wright, 1997; Calderon-Rosado, Morrill,

Chang, & Tennstedt, 2002; Neary & Mahoney, 2005).

Cultural socialization in African American communities helps them better deal with

stressors in the caregiver role, as well as extended exposure to caregiving as children, teenagers,

and eventually as adults. This socialization is more prevalent in the African American and

Hispanic/Latino communities, thereby presenting a higher propensity for family involvement.









This socialization is less prevalent in Caucasian households because of different types of

socialization and smaller family units (i.e., due to lower birth rates and higher divorce rates)

(Dilworth-Anderson, et al., 2004; Pinquart & Sorensen, 2005; Ayalong, 2004).

Based on a study of Latina and Caucasian caregivers of individuals with Alzheimer's

Disease, researchers found that Latina caregivers tend to be younger, less educated, had lower

incomes, and provided more care on a daily basis than their Caucasian counterparts (Coon,

Rubert, Solano, Mausbach, Kraemer, Arguelles, Haley, Thompson, Gallagher-Thompson, 2004).

Using the Resources for Enhancing Alzheimer's Caregiver Health (REACH program), Latina

caregivers reported having more positive experiences and participating in more prayer and

religious activity than their Caucasian counterparts (p<.001), even though the care recipient

seemed to have more behavior problems and had more impairments.

In a study using REACH data with a similar Latino population and length in the caregiver

role, ethnicity was assessed as a possible factor to determine time to institutionalization

(Mausbach et al., 2004). Latina women have "more days of survival" in the caregiver role than

Caucasians, from time of diagnosis to institutionalization, but Latinas who viewed caregiving as

less positive did not feel as confident in their role compared to other Latina women who felt

more confident as caregivers (P=.044) (Mausbach et al., 2004, p. 1080).

How an individual is socialized to view caregiving represents another important factor

when studying race and ethnicity among caregivers (Roff et al., 2004). Research on the

resources for REACH program assessed differences in positive attitudes in the caregiver role and

what contributed to these positive experiences among African Americans and Caucasians. As

predicted, African American caregivers reported more positive aspects as caregivers (p<.001),









were lower in SES, reported lower anxiety levels, and tended to be more religious than

Caucasians (Roff et al., p. P188).

Studying cultural values and beliefs among informal caregivers, researchers found that no

differences existed between African Americans and Whites in gender and education (Dilworth-

Anderson, Brummett, Goodwin, Williams, Williams, & Siegler, 2005). However, African

Americans were more likely to "adhere more strongly to cultural reasons for providing care,"

and females in this group were more likely to adhere to providing care (Dilworth-Anderson, et

al., 2005, p. S259). The researchers concluded that differences in cultural socialization within

the African American community created strong beliefs, traditional values, and attitudes about

caring for dependent family members. They also found that African Americans with a higher

level of education were less likely to adhere to these traditional values. This finding suggests

education and income may have a significant impact on caregivers in several ways. First, those

with higher levels of education have better jobs with health insurance benefits and therefore have

better access to health care benefits. Second, African Americans who have better jobs may also

have the means to provide in-home care or assisted living care for older family members.

African American caregivers were less likely than Whites to place the older adult in a

nursing home or similar facility, regardless of illness, although both groups experienced similar

stressors in their caregiving roles (Stevens, Owen, Roth, Clay, Bartolucci, & Haley, 2004;

Wolinsky, Callahan, Fitzgerald, & Johnson, 1992; Gaugler, Leach, Clay, & Newcomer, 2004).

For those African American individuals who were placed in a nursing home with Alzheimer's

Disease or some form of dementia, contributing factors included being a caregiver of males,

higher caregiver burden, and care receivers who were more "cognitively impaired" (Gaugler et

al., 2004).









African American caregivers reported less stress in caring for an elder with dementia,

although their White counterparts had higher family income and tended to be older (M=72.2 for

Whites vs. M=55.2 for African Americans; P < .0001) (Stevens et al., 2004). Caregivers with

higher income and who were older tended to place chronically ill family members in a nursing

home at a higher rate. Therefore, literature on African American and Hispanic caregivers

suggests it is important to evaluate and assess how they cope with stress effectively in specific

situations.

African Americans recorded significantly lower mental health rating scores than

Caucasians, and Caucasians were more likely to perceive their overall health as good or excellent

compared to their African American counterparts (Kim, et al., 1998). When controlling for

education level, this difference decreased dramatically for both groups. Age, gender, education,

income, physical health status, and self-perceived level of health were significant predictors of

health behavior. African Americans participated less in regular physical activity, but the

researchers operationally defined physical activity as "playing tennis, jogging, and hiking;" not

typical exercises for many ethnically diverse groups.

Age of African American caregivers also affected the degree of depression, with younger

caregivers showing higher rates of depressive symptoms (Wright, Hickey, Buckwalter, Hendrix,

& Kelechi, 1999). However, while caregivers usually decrease their daily exercise after

assuming the caregiver role (Wright, 1997), it is important to present minority caregivers with

exercise regimens pertinent to their culture and lifestyle.

Wallsten (2000) compared gender, race, and income as factors in caregiving based on a

cross-sectional study. The average time spent caregiving was at 5.29 years; with mean income

for African American caregivers at $9,226 annually, and $16,111 for Caucasian caregivers









annually. For health symptoms reported by caregivers, Caucasian females recorded the highest

rate of health symptoms compared to African American females. African Americans and

Caucasians reported equal numbers of individuals in their social support circles.

In a qualitative study of 28 African American men and women diagnosed with prostate and

breast cancer, respectively, all individuals had participated in reciprocal "giving and receiving"

relationships (Hamilton & Sandelowski, 2003, p. 656). Social support circles among African

American families are considered "kinship systems." The common ground for most African

American individuals seemed to be seeking information and consolation through people in their

church or immediate family community, and through religion in general. Most individuals

participated in reciprocal relationships throughout their illness, increased their self-esteem and

overall positive attitudes in dealing with their illness (p. 670).

Few studies have examined Asian caregivers. Researchers conducting a multiethnic study

of family caregivers (African American, Asian Americans, Latino, and Anglo European-

American) studied how ethnically diverse populations view dementia (i.e., in medical versus

non-medical terms) (Hinton, Franz, Yeo, & Levkoff, 2005). The majority of caregivers

described dementia to care receivers in both "biomedical and folk models." Although most

caregivers in this study used both models to describe dementia, a significant association was

found between ethnicity, education, and model type. Implications of this study for a group of

ethnically diverse caregivers include having formal care providers learn more about family

dynamics and traditions in communicating with care receivers. "Folk model" explanations

among caregivers dealing with care of those with dementia could hinder and influence treatment

and medical decisions.









Picot's caregiver rewards scale (PCRS) assessed cross-cultural Chinese adult caregivers,

who were born abroad but were currently living in the U.S. (Hseueh, Phillips, Cheng, & Pico,

2005). Caregivers in this study had lived in the U.S. for a mean of 19 years (range from two to

58 years). Most caregivers were women (70%) and had annual incomes that ranged from

$40,000 to $149,000 (84%). Rewards in the caregiver role were the primary focus of the scale.

Results showed that Chinese caregivers in the study felt that their role as caregivers achieved

"personal growth, fulfilling payback and close bonds with family members" (Hseueh et al., 2005,

p. 768). These findings are fairly consistent with similar studies among Chinese families and

their caregivers.

Formal and non-formal (i.e., traditional) long-term health care preferences were assessed

among a population of older Korean Americans who had sustained a hip fracture or suffered a

stroke (Min, 2005). Care recipients in this study were older than 65 years. Factors used to

assess health care preference included traditional family values, degree of acculturation, and

"level of informal support" that incorporated Activities of Daily Living and Instrumental

Activities of Daily Living (p. 373). Those who were married and had sustained a hip fracture, or

who had previously sustained a hip fracture, were more likely to choose a mixed health care

format (i.e., combination of formal and non-formal health care). For those who reported having

strong traditional values and had suffered a stroke, individuals were not as likely (15%) to

choose a mixed health care format. However, older individuals who had experienced a stroke

were more likely to choose the all-formal health care option. Overall, individuals who were

female, reported being in better health, and who had higher levels of education were more likely

to choose a mixed health care format (Min, 2005).









In a qualitative study of Thai caregivers living in the U.S., several important aspects of

caregiving emerged (Limpanichkul & Magilvy, 2004). Caregivers had a considerable degree of

family support, which helped with emotional and financial well being. Social support from

neighbors and friends also was prevalent among this group of caregivers. Coping strategies

included strong religious beliefs (Buddhism) and participation in activities such as praying.

Finally, a strong partnership with the care receiver was essential, and included "using humor and

understanding the care recipient" (p. 22).

Two studies based in the United Kingdom assessed needs of informal caregivers among a

South Asian population caring for those with dementia (Adamson & Donovan, 2005), and a

South Asian and African/Caribbean population caring for those with a variety of disabilities

(Katbamna, Ahmad, Bhakta, Baker, & Parker, 2004). One study used qualitative methods

(Adamson & Donovan, 2005) and the other study used a combination of qualitative and

quantitative methods. Both studies confirmed it is expected that adult sons and daughters,

including daughters-in-law, will care for elderly family members.

When care recipients had a variety of disabilities (Katbamna et al., 2005), husbands of

female caregivers were "rarely responsible for intimate forms of care" (p. 400), but did assist in

tasks such as taking children to school or clinical appointments. Many female caregivers of

children with disabilities stated that their husbands provided the only source of "emotional

support" they needed for continuation of care. Most caregivers lived in an extended household

environment, and many adults relied on younger children to interpret questions and concerns to

formal health care providers because they spoke little or no English.

Many caregivers reported that caregiving skills were part of their lifestyle since childhood

(Adamson & Donovan, 2005), and often described their current caregiving role as being natural









(p. 39). Again, lack of support from family members influenced the degree of satisfaction and

stress among caregivers. Caregiver responsibilities were mandated according to what the study

states as "hierarchy of caring responsibilities" (p. 45). Female married caregivers viewed their

roles as an extension of their other marital roles.

In summary, it is important to assess multiple factors involved in caregiving. These factors

include current health status of the caregiver, current health status of the care recipient, age of the

caregiver, age of the care recipient, race/ethnicity of the caregiver, and type of disease or illness

of the care recipient. The research shows minority caregivers (i.e., Latino/Hispanic and African

Americans) have lower SES, have less quality access to health care, and care for individuals who

present more severe symptoms, but they tend to institutionalize less, feel more positive and feel

less depressed than their Caucasian counterparts. In the African American culture, caring for a

family member is considered "normative" and therefore more engrained than in the Caucasian

culture. For Latinos, the concept of"la familiar which basically places family above the self, is

a deterrent to institutionalizing family members sooner and motivation for continued care. For

all cultural groups (i.e., African Americans, Latino, and Asians), it is important for formal care

providers to acknowledge how individual groups and families frame the disease (biomedical

versus folk models), which could potentially influence the well-being and care for the care

recipient.

Temperament Type

Temperament, personality, and character are not only three distinct parts of an individual's

persona, but they work together in a manner that predisposes individuals to certain attitudes and

actions. According to research in this area, temperament is described as a pre-disposing factor,

and as Keirsey states (1998), "our brain is a sort of computer with temperament for its hardware,

and character as its software" (p. 20).









In general, the basic characteristics of personality include the manner in which an

individual uses words and ideas (abstract versus concrete), and how we accomplish tasks (i.e.,

tools we use), which can be either cooperative versus utilitarian (Keirsey, 1998). Individuals

who are cooperative in nature essentially follow the approved guidelines and procedures, while

those following a more utilitarian path will use any method that can "promise success with

minimum cost and effort" (Keirsey, 1998, p. 28).

The concept of distinguishing temperament dates back to ancient Greek and Roman times

to Hippocrates (370 BC), Plato (340 BC), Aristotle (325 BC), and Galen (190 A.D.). Galen, a

Roman physician, believed that the balance on our bodies is dependent in the balance of our four

bodily fluids: Sanguine (lively, upbeat), Choleric (excitable, quick-tempered), Melancholic

(worrisome, sad), and Phlegmatic (slow-moving, dejected). Plato categorized people similarly.

Early philosophers focused on individual predispositions toward certain behaviors (Keirsey,

1998, p. 23). These four bodily fluids as described by Galen, and the four attributes an

individual can "contribute to the social order" as described by Plato, are described by the four

Keirsey temperament types (Keirsey, 1998).

Other researchers, such as Pavlov and Freud, in the field of personality and character,

which is closely related to the field of psychiatry, focused more on stimuli and basic instincts of

humans (Biological Aspects of Personality: PSY 230 Theories of Personality, 2000, para. 6;

Keirsey, 1998, p. 20). In the 1920s, Carl Jung began to formulate the basis for the modern

Temperament Theory. Jung stated that individuals have basic archetypes, which are derived

from four psychological functions thinking, feeling, sensation, and intuition (Jung, 1926).

Temperament, which is consistent over time, relates to why people behave a certain way and the









motivations for their behavior (Keirsey, 1998, p. 26; Understanding the Four Temperament

Patterns, 2000, para. 1).

During the 1940s, Katherine Cook Briggs and her daughter Isabel Briggs Myers created

the Myers-Briggs Type Indicator, which extended Jung's theories and categorized different

dimensions of temperament into discrete functions. The MBTI was specifically designed to

identify 16 patterns that projected action and attitude (Keirsey, 1998, p. 3). The receiving

functions include Sensing (S using the five senses to focus on realism, details, and practicality)

and Intuition (N using insight beyond senses, creativity, and being future-oriented). Judgment

functions involve evaluation of circumstances and include Thinking (T evaluating situations

through a cause and effect process and a more impersonal and objective outlook) and Feeling (F

- focused more on personal values, humanism, harmony). How individuals deal with energy is

described as either Extrovert (E energy going into external objects in the environment,

communicating easily, open to new experiences, and sociable) or Introvert (I energy comes

from environment, more solitary and private, and thinking before expressing feelings) (Calahan,

1996; Daley, 2000).

Myers and Briggs also examined "orientation" to the outside world through the

characteristics of Judging (J preferring more organized and decisive activities, close-ended)

and Perceiving (P information gathering continuing as long as possible, more spontaneous,

open to new ideas and experiences) (Calahan, 1996; Daley, 2000). Myers and Briggs felt that

the perceiving or judging preference revealed "a person's attitude or orientation to life" and aptly

determined how individuals dealt with their external environment. Thus, temperament type (a

predisposing factor) represents an important indicator of how caregivers will define and respond

to their caregiving role. For example, a perceiving caregiver, identified as an "Idealist," may









often look for meaning and significance in making a decision in a given situation. Idealists more

likely will value the opinion of family members.

During the transition from childhood to adolescence, and into adulthood, individuals

display what Jung called "dominant and auxiliary characteristics" (Daley, 2000, p. 21). With

auxiliary characteristics or functions, an individual develops a balance between the internal and

external worlds. This transition is important in caregiving because, for instance, a caregiver who

is considered an "Introverted" temperament type may use both self-knowledge and knowledge

from the Internet to make the best medical and quality-of-life decisions for the care receiver.

Psychologist David Keirsey (Keirsey & Bates, 1984; Keirsey, 1998) developed an

instrument to determine individual temperament based on the work of Myers and Briggs. Each

temperament has characteristics of the 16 patterns conceptualized by Myers and Briggs. The

Keirsey Temperament Sorter was created based on the belief that temperament can be

manifested from how an individual uses language and tools (i.e., computers), and that

temperament is defined by "differentiation not integration" as Myers and Briggs proposed

(Calahan, 1996).

Keirsey's temperament types include Artisans (SP), Guardians (SJ), Idealists (NF), and

Rationals (NT) (Daley, 2000). McCarley and Carskaden (1987) compared the Keirsey

Temperament Sorter and the Myers-Briggs Type Indicator for validity and found both

instruments comparable in construct validity (i.e., some types were low and some types were

high).

The four "Artisan" types are ESTP ("Promoter"), ISTP ("Crafter"), ESFP ("Performer"),

and ISFP ("Composer") (Keirsey, 1998, p. 11). The four "Guardian" types are ESTJ

("Supervisor"), ISTJ ("Inspector"), ESFJ (" Provider"), and ISFJ ("Protector") (Keirsey, 1998, p.









11). The four "Idealist" types are ENFJ ("Teacher"), INFJ ("Counselor"), ENFP ("Champion"),

and INFP ("Healer") (Keirsey, 1998, p. 12). The four "Rational" types are ENTJ

("Fieldmarshal"), INTJ ("Mastermind"), ENTP ("Inventor"), and INTP ("Architect") (Keirsey,

1998, p. 12).

Artisans are "talented at using tools" such as language and computers, as well as being

skilled and creative. In decision-making skills, Artisans tend to be the most impulsive of the four

types and "trust their impulses without reserve" (Keirsey, 1998, p. 56).

Guardians are more rule-oriented, use more reasoning skills and are described as "stable,

secure, and following protocol." The best way to describe Guardians is as administrators; their

"first instinct is to take charge and tell others what to do" (Keirsey, 1998, p. 84). Guardians feel

responsible for the morality of those around them.

Rationals are more analytical, they "value expertise and seek progress" and are most likely

to think more abstractly. The four Rational roles tend to be more strategic in nature, tend to

remain calm, tend to seek knowledge, and most often trust their own reasoning. The most

famous Rational was Albert Einstein (Keirsey, 1998, p. 161).

Idealists focus on "cooperative interactions" that deal with moral and ethical issues.

Idealists are more diplomatic in nature, and are more adept at interpersonal communication skills

(Understanding the Four Temperaments, 2000, para. 9). Idealists are the most abstract of the

four temperaments, and tend to be inductive in their thought process, which signifies that they

will take a "few particulars to sweeping generalities" (Keirsey, 1998, p. 121). Because Idealists

usually process in the abstract, their thought and speech patterns tend to be interpretive, which

means that certain comments are "how one thing is really something else" (Keirsey, 1998, p.

121).









Individuals display a predisposition or affinity for certain functions (Understanding the

Four Temperaments, 2000, para. 1). As individuals progress through the life cycle, these

predispositions become more evident in decision making and skill development. Refinement of

one's preferences into adulthood can assist in helping make decisions about professions, family,

health care, and children.

When individuals move into the caregiver role, they experience different stressors that

cause a state of arousal, thereby setting the individual into a "coping" mode regarding that

stressor (Morris, 2000). Temperament, an individual's propensity to act in a certain manner,

when combined with confidence and determination, may predict how a caregiver will cope with,

and respond to, stressors. Temperament is important among caregivers as a function of what

motivates and drives decisions, interactions with others, and actions. In the caregiver role,

decisions and actions regarding the care receiver and the caregiver, him or herself will affect the

health and quality of life for both individuals and those in the immediate family. Therefore, it is

important to determine the temperament of the caregiver to help assist in the facilitation of

information flow, awareness, and communication between formal (medical staff) and informal

caregivers.

Morris (2000) examined temperament types among students selected for dental school

using the Keirsey Temperament Sorter II (N=299). Extroversion (84.3%) exceeded Introversion

(15.7%) among dental school applicants. No significant proportional differences existed

between male and female students. Most (94%) preferred judging over perceiving (6.4%).

Feelings were preferred more by females than by males in the "mental function" category, and

the comparison showed statistical significance. Findings for dental students were similar to

results from studies involving medical students. Although this study did not focus on the role of









caregivers, it depicts the percentage of males and females who have different temperament traits

- more women have the "feeling" trait. In addition, one research study suggested that some

temperament types are more likely to engage in unhealthy behaviors and take more risks (Daley,

2000).

In a study that assessed caregiver characteristics inherent in temperament types,

researchers showed that if caregivers displayed a higher propensity for depression during the first

year of caregiving, there was a higher rate of patient admission to a nursing home. The number

of activities of daily living provided by the caregiver, the caregiver's age, and the caregiver's

health were used as indicating factors in the study (Yaffe, Fox, Newcomer, Sands, Lindquist,

Dane, & Covinsky, 2002).

Hadley (2003) combined Bandura's construct of self-efficacy and the Keirsey

Temperament Indicator II, and applied both of these concepts to determine if they related

directly to job performance. The Keirsey Temperament Indicator II and the Myers-Briggs Type

Indicator usually are used to assess job performance standards in the workplace or in schools.

In summary, temperament is a predisposing factor that changes little throughout the life-

time, although certain aspects, such as decision-making skills, develop during adolescence and

adulthood. Temperament is important in the caregiving role because it often defines one's

natural preferences (i.e., formal versus traditional health care ). It is important for those in

formal health care fields to understand how different temperaments process and communicate.

Temperament types are found in all races, cultures and ethnicities', therefore, this aspect can

bring insight into how health educators, doctors, and other health care providers "get their point

across" for optimum benefits and quality of life among caregiver and care receiver.









Self-Efficacy and Outcome Expectancies

Self-Efficacy, conceptualized by Albert Bandura, is a construct of the Social Cognitive

Theory, which extends to the Social Learning Theory and helps to predict and understand

behavior (Glanz, et al, 2002). Originally, Bandura applied Social Cognitive Theory to children's

behavior in a laboratory setting. According to Bandura (1986), self-efficacy influences how we

make choices, the motivation or effort put forth toward an action, how we accept or reject life

changes, and how we feel about our choices, actions, and changes. Social relationships enhance

feelings of self-worth, self-esteem, and a sense of well-being when individuals feel valued by

meaningful others (Miller, Townsend, Carpenter, Montgomery, Stull, & Young, 2001).

Self-efficacy involves "one's capabilities to organize and execute the sources of action

required to manage prospective situations" (Bandura, 1986, p. 5). Self-efficacy develops over

time and is influenced by one's failures and achievements, influenced by significant others, by

observing others, and by a person's emotional state while performing a behavior or taking an

action. An important determinant of how self-efficacy develops involves "self-reflection,"

defined as the ability of individuals to "analyze their experiences, think about their own thought

processes, and alter their thinking accordingly" (Brown, 1997, para. 21).

Four factors influence the development of self-efficacy: mastery experiences (balance of

successes and failures in tasks), vicarious experiences (watching others similar to oneself

perform and succeed in various behaviors), social persuasion (verbal persuasion about one's

capabilities), and positive mood enhancement and stress reduction (increasing efficacy at

reducing stressors in life-changing situations) (Bandura, 1994).

Self-Efficacy and Effect on Health and Disease

Researchers examined enhancement of support for health behavior change among

postmenopausal women younger than 75, diagnosed with Type II diabetes, and who were at risk









for heart disease (Toobert, Strycker, Glasgow, Barrera, and Bagdade, 2002). Participants were

randomly assigned to three groups: usual care (N=123), lay-led peer group (N=78), and

computer-based support involving community resources (N=78). Measures included behavior

changes (diet and eating habits), physiological changes (carotid artery intimal-media thickness),

psychosocial changes (quality of life and depression), and process measures (perceived social

support, perceived stress, obstacles, barriers) (p. 578). Participants attended retreats to assist

them in preparing meals and eating healthier, to learn stress management techniques such as

yoga, and to study exercise guidelines for their lifestyles. Support group leaders scheduled

interventions during the follow-up period. Results indicated that those who had a follow-up

intervention tended to respond more positively to the information and resources provided to

them.

Conn, Burks, Pomeroy, Ulbrich, and Cochron (2003) studied older women (N=203) and

the health benefits of exercise designed to reduce their risks for cardiovascular disease.

Individuals with high self-efficacy maintained higher exercise expectations and continued their

routines. Self-efficacy emerged as a strong indicator for primary care intervention. Exercise

self-efficacy expectations had a direct significant effect on exercise behavior and on processes of

change (p < .0001).

The Arthritis, Diet, and Activity Promotion Trial (ADAPT) tested self-efficacy for

behavior change in lifestyles of overweight, non-active men and women with osteoarthritis

(Miller, Rejeski, Williamson, Morgan, Sevick, Loeser, Ettinger, & Messier, 2003). This study

was designed to "test the effect of diet and exercise on self-reported physical function" (Miller et

al., p. 473). Women were randomized into four groups healthy controls, dietary weight loss

with no structured exercise, structured exercise with no dietary loss, and exercise and weight









loss. The study included an 18-month follow-up evaluation. In addition, physical functioning

and four different BMI levels (p=0.0062) were directly related to women who were in different

BMI categories as described above. Therefore, how well an individual could perform (physical

functioning) was directly related to how confident he or she felt about themselves.

Northouse, Mood, Kershaw, Schafenacker, Mellon, Walker, Galvin, and Decker (2002)

found that quality of life among women with recurring breast cancer (N=189) related directly to

levels of self-efficacy, social support systems, and cohesiveness or strength of the family unit,

and support with the patient. Women with fewer current concerns gave less negative appraisals

of the illness and caregiving and subsequently reported a higher quality of life. Self-efficacy had

a direct and positive effect on patients' mental health.

Death of a spouse greatly affects the widowed individual's self-esteem, quality of life, and

other self-efficacy issues, especially after an extended period of caregiving (Fry, 2001). In one

study, widows showed lower self-esteem, while education and income predicted widows' quality

of life. Widows who reported greater levels of quality of life also reported greater levels of

perceived self-efficacy in the categories of spirituality, interpersonal relationships, and social

support (Fry, 2001). Similarly, other research indicated that caregivers who showed no

significant strain in the pre-bereavement period were more likely to experience a higher level of

depression post-bereavement (P=0.002), and African Americans recorded significantly lower

depression symptom scores than Whites in the pre- and post-bereavement period (Schultz, et al.,

2001, p. 3127).

Self-Efficacy Among Health Professionals

The relationship between the informal caregiver and the care receiver is important to

understanding the role of the formal caregiver. Although exposure of the care receiver and

caregiver to formal caregivers is minimal compared to family and friends, health care









professionals should understand the impact they can have on basic daily functioning, overall

mental health, and self-efficacy of the caregiver and care receiver.

Pinto, Friedman, Marcus, Kelley, Tennstedt, and Gillman (2002) examined telephone-

based interventions by formal caregivers to promote physical activity among health

professionals. Sedentary adults (72% women, 45% African American) were placed in two

groups, both requiring telephone-based interventions. One group received a healthy eating

promotion and the other group received a physical activity promotion. Both groups were

assessed at baseline, at three months, and at six months after the beginning of phone

interventions. Self-efficacy with physical activity represented the degree of confidence one feels

in being a physically active individual. Moderate physical activity for energy expenditure at

three months showed the only statistically significant interaction (p=0.02) with self-efficacy.

Follow up by formal health care providers and degree of concern were part of the intervention.

Health professionals can play an important role in reducing effects of depression among

cancer patients. Health professionals can increase their own self-efficacy in the formal

caregiving role by understanding factors involved with patient diagnosis, such as their own

supportive role, attitudes, and beliefs about communicating with cancer patients (Parle, Maguire,

& Heaven, 1997). After completing a skills workshop on dealing with cancer patients'

emotional well-being, health care professionals "rated the likely outcome of a discussion of

psychological concerns for a terminally ill patient as more positive" (P < .001) (Parle, et al.,

1997, p. 239). Although health professionals may feel confidence or high self-efficacy in

dealing with patient emotions, they do not feel as confident in managing these feelings.

Self-Efficacy and Caregivers

Gottlieb and Rooney (2004) studied coping and self-efficacy regarding mental health

among caregivers for persons with dementia (N=141). Optimism and relational self-efficacy









(i.e., degree of emotional involvement with the care receiver) predicted coping effectiveness.

Caregiver exposure to dementia symptoms, being less optimistic, and holding weaker beliefs in

one's coping effectiveness were significant predictors of a negative health effect (p < 0.01). In

addition, coping had a major impact on the caregiver's mental health even after controlling for

outcome expectancies.

In a study on self-efficacy of family caregivers who were helping cancer patients manage

end-of-life pain (Keefe, Ahles, Porter, Sutton, McBride, Pope, McKinstry, Furstenberg, Dalton,

& Baucom, 2003), caregiver self-efficacy was significant when correlated with caregiver strain,

positive mood, negative mood, and the patient's physical well being. In situations where

caregivers reported higher self-efficacy, care receiver reported having more energy, feeling less

ill, and spending less time in bed.

Similarly, Tang, and Chen (2002) examined health promotion behaviors of Chinese family

caregivers for stroke patients. Regression analysis revealed the variable of caregiver's health

status as the only positive predictor of caregiver self-efficacy. Satisfaction with social support

was the strongest predictor of caregiver health promotion behavior (p. 331).

Gitlin, Corcoran, Winter, Boyce, and Hauck (2001) studied the effects of a home

environmental intervention on self-efficacy and upset in caregivers and the daily function of

dementia patients (N=171). Caregivers were randomly assigned to a treatment group in which

they were exposed to a home environmental intervention. Caregivers assigned to a control group

were exposed to a usual care setting and were educated on how to adjust their environment to

simplify caregiver workloads and reduce stress. Most caregivers (59%) were daughters or

daughters-in-law. In addition, 126 (74%) were White, and 43 (25%) were African American.

Among the respondents, the mean number of months spent in the caregiver role was 45 months.









The largest interaction occurred for caregiver behavior self-efficacy and behavior upset (p=.04).

In this study, caregivers reported managing Instrumental Activities of Daily Living (IADL) and

Activities of Daily Living (ADL) on a moderate self-efficacy level. Minority participants in the

treatment group showed greater improvement in IADL and ADL self-efficacy.

In a similar study using skills training interventions for female caregivers of relatives with

dementia (N=169), those in anger and depression management groups showed significant

reductions in levels of anger, and depression decreased significantly, while self-efficacy

increased between the first and second data collections (T T2, respectively) (Coon, Thompson,

Steffen, Sorocco, & Gallagher-Thompson, 2003).

Fortinsky, Kercher, and Burant (2002) compared measurement and correlates of family

caregiver self-efficacy for managing dementia (N=197). They sought to develop a strategy to

measure family caregiver self-efficacy for managing dementia, incorporating domains of

symptom management and use of community support services. More than 80% of caregivers

were female, and about 20% classified themselves as African American. Caregivers who

reported a higher level of dementia symptom-management self-efficacy also reported fewer

depressive symptoms. This study suggests that self-efficacy represents a coping mechanism in

response to the stress of caring for a relative with dementia.

Expectancies (or incentives) differ from expectations, both Social Cognitive Theory

constructs because they reflect the value an individual places on "a particular outcome" (Glanz et

al., 2002, p. 172-173). In the caregiver role, expectancies influence the behavior of individuals

in determining choices for themselves and for the care receivers for the most positive outcome.

For example, if the care receiver has a terminal illness, the caregiver will make decisions that









seem best to optimize quality of life for that individual regardless of his or her own personal

health (Wright, 1997).

Summary

Chapter 2 presented a review of literature related to various aspects of informal caregiving

including health, stress, and ethnicity. The review also addressed the importance of the role of

self-efficacy, and how temperament can act as an important determinant of decision-making.

Temperament is considered to be fairly stable through the life span, with each individual

predisposed to certain characteristics within that temperament.

Although no known literature to date has assessed temperament using the Keirsey

Temperament Indicator II and self-efficacy among informal caregivers, studies using the Myers-

Briggs Type Indicator and self-efficacy primarily focused on issues such as self-assessment of

schizophrenics, first-time mothers, work place risks, and career decisions. Studies reviewed in

this chapter imply that certain temperament types interact with self-efficacy to influence risk

taking in personal care and decisions, including health care decisions, interactions in a group

setting, degree and dynamics of social support systems, and relationship dynamics with the care

recipient.

The review included factors that influence individuals serving as informal caregivers such

as cost and personal risks, research that defines and describes types of temperament, and research

that examines self-efficacy in relation to disease as applied to formal and informal caregivers.

Though temperament and self-efficacy can influence how individuals respond to the caregiver

role, the literature review produced few studies that directly examined the relationships existing

among temperament and self-efficacy among informal caregivers. In this study, self-efficacy

combined with expectancies, is presented as an enabling factor.










Because of the intense nature and diversity of tasks involved in caregiving, and the

growing population of caregivers in the U.S., a better understanding of how temperament

influences self-efficacy regarding attitudes and beliefs about caregiving, can present health care

providers and researchers in the field a better understanding of how to assist caregivers. Chapter

3 describes the research design, instruments, and process used to gather information about

informal caregivers

Table 2-1. Incremental caregiving hours and incremental cost of informal care attributable to
dementia
Incremental Cost per Year

Dementia Incremental Hours Using Low-range Estimated Using Mid-range Estimated Using High
Severity Estimated Cost of Informal Care Cost of Informal Care Cost of
Per Week Informal
Care

Normal Reference Reference Reference Reference
Cognition
Mild 8.5 $2,610 $3,630 $4,780
dementia
Moderate 17.4 $5,340 $7,420 $9,770
dementia
Severe 41.5 $12,730 $17,700 $23,310
dementia
Langa, et al., 2001, pg. 775

Table 2-2. Adjusted weekly hours and yearly costs of informal caregiving
Hrs. per 95% CI Cost per
Week (hours) Year 95% CI
No history of cancer 6.9 6.5-7.2 $3,000 $2,800-$3,100
History of cancer, 6.8 6.4-7.1 $2,900 $2,700-$3,000
no recent
treatment
History of cancer, 10.0+ 9.6-10.5 $4,200+ $4,100-$4,500
recent treatment
Hayman et al., 2001, p. 3222; + denotes P< .05









CHAPTER 3
METHODS

This study examined relationships that exist between different temperament types and

perceived self-efficacy among individuals serving in an informal caregiver role. The effects of

self-efficacy on several caregiver characteristics were also examined. This chapter describes the

methodology used in this study, which includes the research design, research variables,

instruments, the pilot study, and the final study.

Research Design

The study used a cross-sectional survey research design to explore possible relationships

between temperament and self-efficacy among informal caregivers. With this design, a standard

protocol can be administered to a group of participants using standardized procedures that

require a reasonable amount of time. Likewise, data can be analyzed uniformly and objectively

(McDermott & Sarvela, 1999). Participants included individuals 18 years or older who provided

part-time or full-time caregiver care for at least one individual 21 years or older. Participants

also participated in support groups, health forums, and health fairs. Two models provided a

theoretical framework for this study.

Social Cognitive Theory (SCT), originally called Social Learning Theory, was

conceptualized by Bandura in the 1960s (Bandura, 1986). Self-efficacy, the most often used

construct in the SCT, helps determine an individual's confidence level in performing an action or

series of actions. Combined with outcome expectancies (i.e., "will others also perceive my

action as beneficial"), self-efficacy can determine duration of performing an action, such as

serving in a caregiver role. In studies on understanding the caregiver role, self-efficacy helps

determine caregiver reactions to stressors and other psychosocial factors. Self-efficacy also

plays a role in overcoming environmental barriers in performing the behavior, or in not starting a









negative behavior (i.e., cigarette smoking). This study used the constructs of self-efficacy and

outcome expectancies from SCTto examine how temperament type interacts with self-efficacy in

the caregiver role (Wilson, Friend, Teasley, Green, Reaves, & Sica, 2002; Glanz et al., 2002, p.

173-174).

Temperament Theory, defined by Carl Jung, posits that seemingly random behavior

actually reflects one's natural preferences, and that certain people are predisposed to display

different behaviors (temperament types).

In one study of employee motivation (Burke, 2004), the factors of choice, competence, and

meaningfulness represented the "primary intrinsic motivators" for the Artisan, Rational, and

Idealist, respectively. Choice, competence, and meaningfulness scales were significantly

different among three temperaments Artisans, Rationals, and Idealists. The Keirsey

Temperament Indicator II, as used in this study, applied Jung's theory to identify four

temperament types: Rationals, Idealists, Artisans, and Guardians (Temperament: Temperament

versus character, 1998, para. 1). No previous study combining the Keirsey Temperament

Indicator II with a self-efficacy scale among informal caregivers was found in the literature.

Research Variables

The study included one explanatory (independent) variable (temperament type) from the

Keirsey Temperament Indicator II, with four response options: Artisans, Idealists, Rationals,

Guardians. The Keirsey Temperament Indicator II has 70 questions and is similar to the Myers-

Briggs Temperament Indicator in that it uses a "series of forced-choice" responses. Each of the

70 questions for the Keirsey Temperament Indicator II did not "reflect any of the other

dichotomies" (Daley, 2000). For example, the 10 specific questions for the dyad characteristic

of E/I were grouped and did not reflect on any of the questions for the dyad characteristics of

S/N, T/F, or J/P. Each question for this instrument has two response options: a or b. The 16









temperament types, as originally defined by Myers and Briggs, are combined into four discreet

temperaments defined by Keirsey. These four temperaments were discussed in Chapter 2. The

Caregiving Self-Efficacy Scale was used as a dependent (outcome) variable for research question

1, and as an explanatory (continuous) variable in research questions 2 through 5.

The study also included several outcome (dependent) variables: (1) the Caregiving Self-

Efficacy Scale, a continuous variable, included scale options ranging from 0 to 100 displayed in

increments of 10, but respondents were free to answer with any number in the scale range that

accurately indicated their degree of confidence; (2) intensity of care, a categorical variable, asked

"how difficult or how demanding is it for you to care for this person" (not difficult at all, a little

difficult, difficult, very difficult, and extremely difficult; (3) total duration of care, a categorical

variable, asked "how long have you provided care for this person" (6 months or less, 6-12

months, 1 year, 2 years, 3 years, 4 years, 5 years or more); (4) daily duration of care, a

categorical variable, asked "on average, how much time do you spend each day caring for this

person" (1 hour or less, 1-3 hours, 4-6 hours, 7-9 hours, 10-12 hours, 12 hours or more); and (5)

relationship to the care receiver, a categorical variable, asked "your relationship to the person

you care for" (my parent, my spouse, my child, a grandparent, an in-law, my friend, my partner,

other).

To provide consistency in data analysis for some of the variables listed above, several

categories were collapsed. For example, for total duration of care, the first two categories (6

months or less and 6-12 months) were combined to produce categories at one-year intervals.

Instruments

Instruments for the study were selected by conducting an extensive literature review of

instruments previously used by researchers to examine self-efficacy, temperament, and other

functions and aspects of caregiving. The protocol for this study included two main instruments









and caregiver population demographics: (1) Caregiving Self-Efficacy Scale (Steffen et al.,

2002), (2) Keirsey Temperament Indicator II, and (3) Caregiver Profile Information.

Caregiving Self-Efficacy Scale

After extensively reviewing the literature, this scale was deemed most appropriate to

measure self-efficacy among caregivers. The instrument was created originally for caregivers of

dementia patients. The scale was designed specifically to measure perceived efficacy among this

population of caregivers. The 15-item scale includes three sub-scales: "Obtaining Respite

Care," "Controlling Upsetting Thoughts About Caregiving," and "Responding to Disruptive

Behaviors" (Appendix D). Respondents rated their perceived confidence on a 0 to 100 scale,

with 0 as "cannot do at all" and 100 as "certain can do." Bandura, who conceptualized the

construct of self-efficacy, used in both SCT and SLTin the 1970s, contributed to the

development of this scale for adequate reliability and validity. After reviewing the 15 items, the

researcher determined that the items would pertain to caregivers providing care to terminally ill

or chronically ill individuals, including all types of dementia.

The development process for the Caregiving Self-Efficacy Scale included rigorous item

analysis procedures. The original scale produced reliability coefficients of .80 or higher for each

of the three sub-scales, and for the total scale. This total scale, which represented one of the

dependent variables for the study, was considered a "continuous" variable because the scores

from the three sub-scales were averaged to produce an overall score from 0 to 100 (ex., 85.4).

For the purpose of this study, only the total self-efficacy score was used (i.e., total number for

the three sub-scales). Permission was obtained from the first author to use the scale and the

instrument was used as originally published for the current research study (Steffen et al., 2002).









Keirsey Temperament Indicator II

The Keirsey Temperament Indicator II instrument uses four "bipolar scales" to sort

individuals into 16 personality types. These four scales include Extroversion/Introversion (E/I),

Thinking/Feeling (T/F), Sensing/Intuition (S/N), and Judging/Perceiving (J/P) (Alpine Media

Corporation, 2003, p. 6-7). Keirsey extended the process to sort individuals into four

temperament types with four distinct personality attributes within each temperament, using a 70-

item scale (Appendix E). The four types are: Artisans (ESTP, ESFP, ISTP or ISFP), Guardians

(ESTJ, ESFJ, ISTJ, or ISFJ), Idealists (ENFJ, ENFP, INFJ, or INFP), and Rationals (ENTJ,

ENTP, INTJ, or INTP).

The Keirsey Temperament Indicator II resembles the Myers-Briggs Temperament

Indicator in format and approach, though it is more limited in scope. David Keirsey modeled the

Keirsey Temperament Indicator II after the work of Myers and Briggs. The Keirsey

Temperament Indicator II has been applied in assessing temperament among dental and medical

students, in a classroom setting, and in business settings, but not specifically among caregivers or

in any other health behavior venue known to this researcher. No peer reviewed journal

publications provided adequate estimates of validity and reliability for the Keirsey Temperament

Indicator II, so validity and reliability of the instrument were assessed using the final population

data. The print version of the Keirsey Temperament Indicator II instrument was used for both

the pilot and final study populations because that version better suited the nature and age of the

study population.

Each of the four Keirsey temperaments is considered continuous in nature. Statistical

analyses were previously conducted on a wide scale of the computerized version of the Keirsey

Temperament instrument (Alpine Media Corporation, 2003). Reliability for this instrument was

previously measured using several methods including Item-Response Theory method (ranging









from .33 to .76), internal consistency coefficients alpha (.80 and higher), and test-retest methods

(.80 and higher).

For example, using Item-Response Theory among males and females in each group, for the

four "bipolar scales," reliability estimations ranged from .81 to .83: E/I, total sample=.83,

males=.83, females=.83; S/N, total sample=.82, males=.82, females=.82; T/F, total sample=.83,

males=.82, females=.82; J/P, total sample=.82, males=.81, females=.82. (Alpine Media

Corporation, 2003, p. 38).

Using Pearson's correlation to compare the Myers-Briggs Temperament Indicator and the

Keirsey Temperament Indicator II, correlation coefficients of .62 and higher for the eight

temperaments, E/I, S/N, T/F, J/P were reported (Hadley, 2003). Another study produced Pearson

correlation coefficients ranging from .68 to .84 (Ludy, 1999; Calahan, 1996).

Validity measures also were conducted by the Alpine Media Corporation (2003) on the

Keirsey Temperament Indicator II. The 140 variables coincided with the 70 items. Factor

analysis of the Keirsey Temperament Indicator II identified 11 factors with eigenvalues of 1.0 or

greater. These 11 factors included, but limited to, Factor 1 (sensing versus intuition), Factor 2

(thinking versus feeling), Factor 3 (extroversion versus introversion), Factor 4 (judging versus

perceiver). Factors 10 and 11, which were the weakest, included a variation of S/N, but also

included T/F and J/P. Factor 9 was closely related to Factor 1, Factor 6 was closely related to

Factor 2, and Factors 5, 7, and 8 were closely related to Factor 4. The Alpine Media Corporation

analysis included scores from more than 77,000 individuals who completed the instrument. The

analysis used SPSS and factor analysis statistical procedures to determine the number of unique

factors or constructs that accounted for significant variance in the population data set (Alpine

Media Corporation, 2003, p. 50). Of 11 factors mentioned previously, nine showed significant









loadings with some greater than .24, and with most greater than .35. This finding indicates that

the instrument validity and relationships among factors is fairly strong.

Other studies used regression analysis to examine extroversion/introversion, self-efficacy,

and other demographic study variables, including satisfaction in the field of cardiopulmonary

care (Hadley, 2003; Ludy, 1999). Other than the validity study mentioned previously (Alpine

Media Corporation, 2003), the literature review did not locate other studies that addressed

validity as extensively.

Caregiver Profile Information

A 17-item caregiver profile was developed to obtain demographic information about

caregivers such as age, gender, marital status, race/ethnicity, income level, relationship to the

care receiver, and items related to the frequency, duration, and difficulty of the care provided.

Additional profile items included age and gender of the person receiving care, and medical

resources or information used before and after becoming a caregiver (Appendix F). The revised

profile information used with the final study population included one additional question (#21)

based on suggestions from the pilot study participants ("Do you care for more than one

individual? If yes, how many"). Some caregivers provide care for more than one individual,

which influences multiple factors in the caregiving role.

Pilot Study

Preliminary Review

A draft version of the study protocol was prepared to include a script for prospective

participants (Appendix G), the Caregiving Self-Efficacy Scale (Appendix D), the Keirsey

Temperament Indicator II (Appendix E), and the Caregiver Profile Information (Appendix F).

The researcher contacted four individuals who were currently caregivers (Appendix H),

and asked them each to complete the entire instrument. These same individuals assessed the









instrument for readability, comprehension, and cultural sensitivity. They also noted the time

required to complete the entire instrument. The four individuals also offered comments or

suggestions about the structure and questions of the instrument. One suggestion was to copy and

enlarge the Keirsey Temperament Indicator II for caregivers who had difficulty reading smaller

print. Acting on this suggestion, the researcher provided this option at all meetings, forums, and

seminars where data were collected. As an additional check of the protocol and procedures, the

researcher asked four non-caregiver graduate students to read the instrument and answer all

items as quickly and accurately as possible. The researcher compared completion times of four

caregivers and completion times of the non-caregivers in order to accurately present a

completion time estimation to volunteers for the pilot study and final population. The

completion time for the four panel members was longer than the completion time by the graduate

students. The time participants in both the pilot study and final population took to complete the

instrument ranged from 15 to 35 minutes.

Procedures

Beginning in Summer 2005, social support organizations were contacted and requested to

participate in the study (Appendices A and B). Participants for the pilot study (N=25) were

recruited from meetings of social support groups facilitated by the Family Caregiver Support

Program (Appendix C). Although circumstances differ, pilot studies usually include a small

number of subjects, often selected for convenience (Alreck & Settle, 1995). Caregiver meetings

for the pilot study were held in North Central Florida counties, other than Alachua County,

during August and September 2005 (Appendix C).

Participants were recruited at a caregiver support group meeting with the group facilitator

present. The group facilitator previously had been contacted and the researcher had received

permission to attend the meeting and ask for volunteers. Participants for the pilot study, as well









as the final study population, were caring for an individual in their homes or at another facility

(hospital, assisted living or nursing home), and on a full-time or part-time basis. Participants

provided care that included some Activities of Daily Living (ADLs) such as bathing, changing

and feeding, or some Instrumental Activities of Daily Living (IADLs) such as shopping, paying

bills, cooking, and helping to clean a house or apartment (Arno et al., 1999).

A codebook was set up before data were collected. Each item in the instrument was coded

for data management purposes. Surveys for the pilot study population were numbered from 1 to

25. The Keirsey Temperament Indicator II items were coded according to temperament type as

outlined in the test manual. The information was recorded in an Excel spreadsheet, followed

by information from the remainder of the survey.

At the meetings, the researcher introduced herself and briefly described the survey and its

contents, and her affiliation with the University of Florida. She indicated that a gift card

incentive would be provided upon completion of the entire survey. Volunteers who agreed to

participate received two copies of the Informed Consent, a Keirsey Temperament Indicator II

booklet, the Caregiving Self-Efficacy Scale, and the Caregiver Profile Information questions.

Each participant kept a copy of the Informed Consent form with contact information, and a

signed copy was given to the researcher.

At the meetings, the researcher instructed participants to answer all items in the best way

possible, and to answer each item as it pertained to them at the present time. For example, a

frequent comment about some items on the Keirsey Temperament Indicator II was, "Both of

these apply; how do I answer it?" The researcher was present during the completion of the

survey if any questions arose about instrument items. The researcher always instructed

participants to choose the better response for their current caregiving situation.









While the survey was being completed, some participants discussed the questions with

other participants or made comments to the researcher about the survey. Therefore, a noise

factor evolved during survey completion, perhaps due to the fact that many caregivers were close

friends, regardless of age and ethnicity. As one caregiver said, "We are like a family." During

other meetings in the pilot study, some participants arrived 10-15 minutes after the meeting

began. Therefore, a "lag" time occurred between completion of the survey by participants who

arrived on time and those who arrived late. During the time the latecomers were completing

their survey, other group members chatted among themselves or queried the researcher further

about her study.

All surveys were checked to ensure that all sections were completed. Only one survey was

not fully completed. Participants who completed the protocol received their choice of a 60-

minute telephone card or a $5.00 gift certificate from Publix or WalMart. Most of the requests

were for gift certificates from Publix or WalMart and both were equally popular. Completed

surveys were returned to the researcher who presented participants with the gift card of their

choice. Participants who chose not to finish and complete the survey, did not receive a gift card.

When all surveys had been collected from participants, the researcher thanked the group for their

assistance and left the meeting.

Groups for the pilot study ranged from three to 10 participants. Pilot study participants

required an average of 25 minutes to complete the protocol. Participants who wanted to know

their temperament type were assured confidentiality by the researcher and contacted by mail at a

later date with the information.

Informed Consent

The University of Florida Institutional Review Board (IRB) approved the data collection

procedures for the pilot study and for the final study population (Appendix I). Participation in









the pilot testing and final study was voluntary. All participants received a description of study

procedures and information regarding their rights as a participant, and complete confidentiality

was guaranteed and protected. Participants were informed that they could discontinue answering

questions at any time during the process without penalty.

Because volunteers were recruited from specific caregiver support meetings, only the

support group name was used to identify participants on the Excel spreadsheet. The only

identification of participants was by type of group for the data collected and by number on the

survey for analysis purposes (i.e., Hospice, Caregiver meeting, Health Fair/Forum). Only the

researcher had full access to identification of participant names through the signed informed

consent forms.

Findings

Descriptive statistics were calculated to determine baseline frequency rates in each

temperament category, average self-efficacy scores, frequency rates for race/ethnicity, frequency

rates for self-reported health, and frequency of self-reported difficulty in caring for their friend or

family member.

Females comprised 92% of the pilot study population (n=23), with the percent of

White/Caucasian and African American participants at 60% and 40%, respectively. These were

the only two races represented in the pilot study. Most caregivers (72%) were aged 50 or older

(n=18) and married (52%, n=13). Most caregivers reported their overall health as excellent, very

good, or good (68%, n=17).

Guardians were the most frequently reported temperament type (72%, n=18), followed by

Idealists (16%, n=4), and Artisans (12%, n=3). No participants in the pilot study were reported

in the Rational type.









The majority of care receivers were aged 60 or older (80%, n=20), with most being a

parent (28%, n=7) or a spouse (24%, n=6). Regarding degree of difficulty in caring for the

individual, caregivers most often reported "a little difficult" (44%, n=l 1) or "difficult" (28%,

n=7). The most often reported illness of the care receiver was some form of dementia (i.e.,

Alzheimer's Disease), which participants wrote in under the "Other" response option. The

exclusion of dementia as an option was an oversight when creating the instrument.

Potential bias was controlled in four ways. First, the same data protocol was followed at

almost all meetings, health fairs, and health forums. Meetings usually were about one hour in

duration, while health fairs and health forums were at least four hours in duration (i.e., 10 a.m. to

2 p.m.). Second, the researcher was present to assist with questions or concerns at all meetings

for the pilot study and almost all meetings for the final population. The only exception where the

researcher was not present was with the Hospice volunteers. This process is discussed in the

"Final Study" section. Third, the researcher was able to assess, at the time of completion,

whether the caregiver had inadvertently missed or skipped any items. Fourth, data analyses were

limited to responses from volunteer participants who were 18 years or older, who were currently

caring full-time or part-time for a friend or family member 21 years of age or older, and who

were caring for the individual in their home or at another facility with frequent access.

Based on results from pilot testing, some adjustments were made to the data collection

procedures, instruments, and caregiver profile demographic information. In the pilot study, the

self-efficacy scale and demographics portions of the instrument were printed on both sides of the

survey (i.e., front and back of the paper). This created confusion among some pilot study

participants because caregivers did not notice the questions on the back side of the paper, missed

some questions and left them unanswered. However, because the researcher was present at all









Pilot Study caregiver meetings and reviewed the survey before presenting the gift card, she was

able to return the unanswered portions to volunteers and they were asked to complete the

unanswered portion.

For the final population, participants received surveys printed on one side only. Also, for

the pilot study, the researcher did not seal the 70 Keirsey Temperament Indicator II questions

from the coding portion of the booklet (see Appendix E), and some participants turned to the

coding portion of the booklet after completing the 70 questions. For the final study, the

researcher stapled or taped the question portion of the booklet from the coding portion of the

booklet and wrote "Do Not Open" to prevent confusion among participants. The researcher also

verbally asked participants to stop immediately after completing the 70 questions.

Likewise, on the self-efficacy scale, some participants in the pilot study attempted to

calculate their own total scores. The researcher instructed participants for the pilot study and the

final population to leave the total score line blank.

Final Study

Instrumentation

The final version of the study protocol was prepared to include a script for prospective

participants (Appendix G), the Caregiving Self-Efficacy Scale (Appendix D), the Keirsey

Temperament Indicator II (Appendix E), and the Caregiver Profile Information (Appendix F).

The Caregiver Profile Information included one additional item suggested during the pilot study:

21. "Do you care for more than one individual?" This item required a "yes" or "no" answer from

participants. If "no" then the researcher coded the number of care receivers as "1." If "yes,"

then the caregiver was asked "If yes, how many total?" Below item 21, the caregiver responded

to the subsequent items "NOTE: If you are caring for more than ONE person, please answer the

following questions for ONE of the individuals you care for." The researcher did not prompt









caregivers to answer regarding the most (or least) difficult care receiver. Therefore, caregivers

may have responded for the person that occupies more of their time.

Procedures

Data for the final study were collected during Fall 2005 and Spring 2006. Participants for

the final population were recruited from caregiver meetings, health forums of social support

groups facilitated by the Family Caregiver Support Program, health fairs sponsored by various

organizations including the county Aging Care Services, health fairs sponsored by county

Hospice organizations, Haven Hospice volunteer base, and support groups at various assisted

living facilities (Appendix B).

To collect information from the volunteer base at North Central Florida Hospice

organization, the researcher submitted documents for review by the research board at Hospice,

met with the board to address questions or concerns, and ultimately received approval. Finally,

the researcher met with volunteer group facilitators and discussed appropriate procedures and

options to distribute the survey to their volunteers to control bias in this group. The researcher

instructed volunteer group facilitators how to answer general questions regarding the survey, and

how to answer questions unique to their particular situations. Hospice volunteers were unique in

that some were currently caregivers to a family or close friend, but all Hospice volunteers were

providing frequent and continuing "respite" caregiving to families, or family members, and

caring for someone with a terminal illness. When the researcher received permission to use the

Hospice volunteers, information regarding the process of recruitment was not provided.

However, the researcher was able to use this volunteer base after providing careful instruction to

group facilitators, a detailed set of instructions, and a precise script presenting any concerns.

Participants for the final study (N=160) came from some 10 counties in the North Central

Florida region, including Alachua County. The researcher traveled north to the Florida-Georgia









border, south to Weeki Wachi, as well as east and west between these locations to recruit

caregivers. At least 10 meetings were cancelled during the course of data collection due to

facilitators being unavailable or facilitators not having enough caregivers (participants) who

could attend.

The original group of participating organizations grew in number during the course of data

collection due to referrals from the original organizations and from individuals. Only the

original organizations contacted before the pilot study began are listed (Appendix B) due to the

large number of organizations ultimately involved. One of the original organizations, the

Alzheimer's Association of North Central Florida, decided not to permit the researcher to attend

meetings and recruit volunteers.

Sample size was set by effect size and Type I error rate. Effect size in this study was

interpreted as meaning that no association existed among variables. Effect size was estimated at

10 participants per treatment. Type 1 error rate was set at &=05, and effect size (designated as

6d2) was set conservatively (-.10) for a projected pool of up to 200 participants (Cohen, 1988;

Practical Introduction to Power and Effect Size, pg. 1). Definitions of effect size are small (r =

+.20); medium (r = +.30), and large (r = +.50).

Estimation of power for a statistical test allows the researcher to determine how many

participants are necessary in each group to show adequate probability to assess significance, if

any. Power of a statistical test depends on alpha level or Type 1 error rate, effect, and sample

size. In general, sample sizes of more than 100 individuals are considered to have good

statistical power (Kaplan, 2006, para 1). The researcher attended meetings until 160 participants

had responded to the survey. This number was sufficient to support the data analyses and

provide adequate validity and reliability.









Participants in the final study completed the instrument in the same manner as in the pilot

study (i.e., at support group meetings, health forums, etc.). The number of social support groups,

health fair groups, and health forum participant groups ranged in size from three to 25,

depending on type of group and county in which the group or event took place. During the pilot

study, most surveys were completed at the beginning of a caregiver meeting. During the final

study, when the researcher attended meetings, health fairs, and forums, participants completed

the survey at the beginning of an event, during a lunch break, at the end of a meeting, or at other

times during the event.

As in the pilot study, talking by participants and non-participants created a noise factor. At

health fairs and health forums, the researcher sat at a designated table with chairs available for

participants to complete the survey. During these events, participants talked with the researcher

throughout the day. At adjoining tables, other health care providers offered blood pressure

checks, bone density tests, and other screening exams, often causing a distraction for participants

completing the instrument. This distraction often caused participants to take longer at their

responses. At some health fairs and forums, participants requested to take the survey to other

chairs and tables in the room to complete them. Some participants opted to sit outside the

building or at a quieter location to complete the instrument, which meant that the researcher was

not always in close proximity to the participants for questions regarding the survey. Some

participants (about 10%) declined the gift card incentive offered to them for completing the

survey.

Each completed instrument was assigned a number and recorded by type of group in the

codebook at the time of data collection. The number coincided with the specific support group









(i.e., l=Alzheimer's group, 2=general social support group, etc.). Other than the group code, no

other means existed to identify participants.

Data Analysis

Data were obtained from volunteer participants who were 18 years or older, who were

currently caring full-time or part-time for a friend or family member 21 years of age or older, and

who were caring for the individual in their home or at another facility with frequent access.

The Keirsey Temperament Indicator II was coded according to temperament type in the

booklet as outlined in the test manual. Originally, each temperament type was coded as "0" for

not having the temperament, and "1" for having the temperament. For example, if a volunteer

was a "Guardian" temperament, only this temperament would have a "1" and the other three

would have a "0." When analyzing the significance of the research question, temperament types

were recorded. One temperament was recorded as "1," and then the others were recorded as "2,"

"3' and "4." Finally, the four types were combined under one variable for analyses (Meyer,

McGrath, & Rosenthal, 2003). Responses that were left blank (i.e., not answered) were coded as

"0" for items on the Keirsey Temperament Indicator II, and Caregiver Demographics. Blank

responses on the Caregiving Self-Efficacy Scale were also coded as "0."

Other categorical variables, such as total time in the caregiver role and daily time spent in

the caregiver role, also were recorded. After examining frequency tables for these variables,

categories were collapsed and recorded for a more accurate calculation in data analyses. All

Keirsey Temperament information was recorded on an Excel spreadsheet, followed by

information from the remainder of the survey, including the Caregiving Self-Efficacy Scale total

score, and caregiver demographic information, and then transferred to SPSS v. 14.0 for

statistical analysis.









After determining that the data set was normally distributed, descriptive statistics were

calculated to determine baseline frequency rates in each temperament category, average self-

efficacy scores, frequency rates for race/ethnicity, frequency rates for self-reported health status,

and frequency of self-reported difficulty in caring for the friend or family member.

Several types of data analyses were conducted on the final data set to determine a profile of

participants in the study. Bivariate analyses included 1-way analysis of variance (ANOVA) and

Spearman Rank Correlation measures that were used to analyze research questions one through

five. Analyses for all research questions were tested at a .05 significance level for 6. Multiple

Linear Regression was used to examine associations between each of the four temperament types

(explanatory variable), total self-efficacy score, total duration of care (outcome variables), and

relationship to the care receiver (covariate).

Univariate Procedures

Univariate analyses can be used to present primary statistical information and to assess

patterns within a data set (McDermott & Sarvela, 1999; Noland, 2000). In this study, frequency

distributions and descriptive statistics were calculated to obtain baseline information about

frequency of gender, race/ethnicity, temperament type, mean self-efficacy scores, and all other

variables. These descriptive statistics were also used to determine a general profile of the

caregiver population for the study.

Bivariate Analyses

One-Way Analysis of Variance (ANOVA), an inferential statistic, can be used with more

than one independent variable, each of which may include two or more conditions. When only

two conditions exist in a single independent variable, using a One-Way ANOVA is equivalent to

a T-test. However, ANOVA has an advantage because it generalizes to experiments with more









than one independent variable, and may include more than two levels or conditions for each

independent variable (Weaver, 2003, para. 1; BBN Corporation, 1997, para 5).

ANOVA compares variance of scores within conditions. Variance of condition produces

the sum of squares within groups (SSwg), and sum of squares between groups (SSbg),

respectively. Output from each observation (experiment) consists of "variations from an overall

mean value" (Reliasoft Corporation, para. 2). These variations are due to factor or level, or to

variation due to random error. The ANOVA model used is,


y1/I- + Ti+ fij
where, P= the overall mean, r,= the level effect, and l-- the random error component.

Spearman Rank Correlation measures "correlation between two value sequences," usually

with one ordinal and one continuous variable. Each sequence is ranked separately, with rank

differences calculated at each position, i.

A nonparametric (distribution-free) rank statistic measures "strength of association

between two variables" (Weisstein, page 1, para. 3).

Multivariate Analyses

A Stepwise multiple linear regression model was used to conduct multivariate analyses for

the outcome (DV) and explanatory (IV) variables, and for any covariates. A multiple regression

model can be used when explanatory (IV) variables are continuous when we enter temperament

type as separate entities, as in the Keirsey Temperament Indicator II, and when the outcome

variable is continuous, as in the Caregiving Self-Efficacy Scale, and with a normal distribution,

as was indicated in this population. The four temperament types in the Keirsey Temperament

Indicator II were treated as four different explanatory (continuous) variables









Multiple regression can be used to predict, or learn, about the relationship between a

dependent variable and several independent variables (StatSoft, 2006; PA765, 2006). Multiple

regression examines the relationship between each of the IVs and the DV after "taking into

account the remaining IVs" (Rosner, 2000, p. 466-467).

Y = blXl+b2X2 ...+bnxn + c

Where Y is the dependent variable and "61z1 + 62z2 + 63z3" is the dependent variable, the

"b's" are regression coefficients, which represent the change in the dependent variable (y) when

the independent variable changes 1 unit. The "c" is the constant. Multiple regression is similar

to assumptions given in correlations in that the "relationship linearity is observed with the

absence of outliers" (PA 765, 2006). The error is assumed (PA 765, 2006).

Stepwise multiple regression, or statistical regression, computes the ordinary least squares,

used for the best fit of the regression line. In this process, the independent variable that

correlates best with the dependent variable is factored into the equation. Then, the rest of the

independent variables with the highest partial correlation with the dependent variable, are

computed after controlling for the first independent variable. Stepwise regression is most often

used to explore and predict research questions (PA765, 2006).

Instrument Reliability

Instrument reliability for the Caregiving Self-Efficacy Scale and the Keirsey Temperament

Indicator II was generated based on final study population data using Cronbach's alpha measure

of internal consistency (Cronbach, 1951; Traub, 1994; Crocker & Algina, 1986). The

Caregiving Self-Efficacy Scale produced a total reliability of .90 (Table 3-1). Although not

included in the analysis of data for this study, reliability coefficients also were generated for the









three subscales of the Caregiving Self-efficacy Scale: .85 (Obtaining Respite), .87 (Controlling

Upsetting Thoughts about Caregiving), and .93 (Responding to Disruptive Patient Behavior).

To estimate reliability for the Keirsey Temperament Indicator II, each of the 70 items

completed by all 160 participants was coded as "1" for "a" and "2" for "b." This process

generated a Cronbach's alpha of .86 for the instrument total score. Although not included in the

analysis of data for this study, reliability coefficients also were also generated for E/I (.77), S/N

(.73), T/F (.70), and J/P (.72).

Questions for each dyad characteristic were grouped as follows: questions for E/I are

numbers 1, 8, 15, 22, 29, 36, 43, 50, 57, and 64; questions for S/N are numbers 2, 3, 9, 10, 16,

17, 23, 24, 30, 31, 37, 38, 44, 45, 51, 52, 58, 59, 65, and 66; questions for T/F are 4, 5, 11, 12,

18, 19, 25, 26, 32, 33, 39, 40, 46, 47, 53, 54, 60, 61, 67, and 68, and questions for J/P are 6, 7,

13, 14, 20, 21, 27, 28, 34, 35, 41, 42, 48, 49, 55, 56, 62, 63, 69, and 70.

Summary

Chapter 3 described the methods used to examine associations between different

temperament types and perceived self-efficacy among individuals serving in an informal

caregiver role. The chapter included a description of the research design, research variables,

instruments, the pilot study, the final study, and data analysis procedures. Data were collected

from informal caregivers for the pilot study during August and September 2005 and for the final

population from October 2005 through January 2006. A total of 25 caregivers participated in the

pilot study and 160 caregivers participated in the final population.

Descriptive statistics were calculated to determine baseline frequency rates in each

temperament category, average self-efficacy scores, frequency rates for race/ethnicity, frequency

rates for self-reported health status, and frequency of self-reported difficulty in caring for the

friend or family member. Bivariate analyses included 1-way analysis of variance (ANOVA),









and Spearman Rank Correlation measures were used to analyze research questions one through

five. Analyses for all six research questions were tested at a .05 significance level for 6.

Multiple Logistic Regression was used to examine associations between each of the four

temperament types (explanatory variable), total self-efficacy score, total duration of care

(outcome variables), and relationship to the care receiver (covariate). Chapter 4 discusses results

from analyses of the six research questions posed in the study.

Table 3-1. Instrument specification table

Scale Variable Type of Item Possible Responses Reliability
Variable Number For Each Item Coefficient

Keirsey Temperament Explanatory/ 70 2 .86
Indicator Outcome

Caregiving Self-Efficacy Explanatory/ 15 100 .90
Outcome











Table 3-2. Keirsey Temparament Indicator II Item to total correlation

Item Corrected Item-Total Correlation Cronbach's Alpha
if Item Deleted


Q1
Q2
Q3
Q4
Q5
Q6
Q7
Q8
Q9
Q10
Q11
Q12
Q13
Q14
Q15
Q16
Q17
Q18
Q19
Q20
Q21
Q22
Q23
Q24
Q25
Q26
Q27
Q28
Q29
Q30
Q31
Q32
Q33
Q34
Q35
Q36
Q37
Q38
Q39
Q40
Q41
Q42
Q43
Q44
Q45
Q46
Q47
Q48
Q49
Q50


.024
.176
.024
.288
.033
.226
.069
.147
.454
.108
.418
.226
.337
.178
.112
.382
.187
.434
.250
.333
.192
.084
.182
.175
.239
.409
.246
.219
.331
.111
.284
.278
.205
.269
.288
.229
.398
.326
.300
.310
.543
.316
.066
.342
.401
.168
.226
.432
.275
.204











Table 3-2. Continued


Corrected Item-Total Correlation


Cronbach's Alpha
if Item Deleted


Item


Q51
Q52
Q53
Q54
Q55
Q56
Q57
Q58
Q59
Q60
Q61
Q62
Q63
Q64
Q65
Q66
Q67
Q68
Q69
Q70


.238
.224
.288
.245
.392
.319
.110
.481
.414
.370
.355
.422
.369
.164
.230
.324
.166
.196
.138
.483









Table 3-3. Caregiving Self-Efficacy Scale Item to total correlation

Item Corrected Item-Total Correlation Cronbach's Alpha if
Item Deleted
Item 1 (Respite) .57 .89
Item 2 (Respite) .55 .89
Item 3 (Respite) .50 .89
Item 4 (Respite) .47 .89
Item 5 (Respite) .53 .89
Item 6 (Upset) .55 .89
Item 7 (Upset) .59 .89
Item 8 (Upset) .55 .89
Item 9 (Upset) .56 .89
Item 10 (Upset) .48 .89
Item 11 (Disregard) .65 .89
Item 12 (Disregard) .68 .89
Item 13 (Disregard) .58 .89
Item 14 (Disregard) .69 .88
Item 15 (Disregard) .66 .89


Yj-=- + + ij

Figure 3-1: ANOVA Equation Model




Y = blxl+b2X2 ...+bnxn + c

Figure 3-2: Multiple Linear Regression Model









CHAPTER 4
RESULTS

This study examined relationships that exist between different temperament types and

perceived self-efficacy among individuals serving in an informal caregiver role. This chapter

discusses characteristics of study participants including group type, gender, race, temperament

type, caregiver and care receiver age, overall health status, and duration of care. The chapter

also presents results from data analyses used to address the six research questions posed in the

study.

Participant Characteristics

Study participants included caregivers 18 years of age or older. All participants were

caring for an individual 21 years of age or older; caring for an individual with a chronic illness,

terminal illness, or other debilitating illness; caring for an individual on a full- or part-time basis;

and caring for an individual in their home or at a facility with frequent access by the caregiver.

Data collection procedures produced 160 usable surveys (64%), which was considered adequate

to support statistical tests used in data analyses.

The final population had a greater number of female caregivers (n=131, 82%), than of

male caregivers (n=29, 18%). Most of the literature on caregivers indicate a greater number of

female caregivers (about 70%), but the current population had a higher rate of female caregivers

possibly because approximately one-third of caregivers were single, divorced or widowed and

possibly husbands of caregivers were still working and not available to attend meetings.

Most participants were either White/Caucasian (85.6%) or African American (13.1%),

which is not an equitable representation of ethnicities in the United States, but possibly an

accurate indication of caregivers in the North Central Florida region. Only a few Hispanic

individuals and only one Native American caregiver completed the survey. The population in









the Pilot Study portion was about equal Caucasians and African Americans. It seems that few

Hispanic caregivers attended the meetings possibly because meetings were in rural areas, during

times of the day that were not convenient, or transportation was not available. Individuals may

not have had sufficient notice, may not have been able to drive to the location (i.e., sharing

vehicles in the family), or there may have been a language barrier in the case of Hispanic

caregivers. Therefore, results focused on males and females who reported their ethnicities as

White/Caucasian and African American.

Caregiver Group Type, Gender, and Race

Table 4-1 provides a summary of participants by type of group where information was

collected, gender, and race/ethnicity. The characteristics in Table 4-1 reflect the distribution of

participants affiliated with various organizations contacted by the researcher prior to collecting

information. The researcher sought an even distribution of participants from these organizations.

Distribution by gender and race were chosen based on similar studies in the literature, and these

variables were discussed and analyzed in this study.

Most caregiver information was collected at health fairs and forums (58.1%), followed by

general caregiver meetings (28.1%). Health fairs and forums attracted a larger and more diverse

population of caregivers. Caregiver meetings usually ranged in size from three to 10

participants. Most participants were female (82%) and White/Caucasian (85.6%). The literature

confirms that more females than males serve in a caregiver role (Cannuscio et al., 2004; Collins

et al., 1997). Some researchers estimate that as much as one-third (33%) of men serve as

caregivers. The male population of caregivers was much smaller in this study.

Temperament Type, Age, Overall Health, and Duration of Care

Table 4-2 shows frequency and distribution of temperament type, age, overall health, total

duration of time as a caregiver, and daily duration of time required in the caregiver role. Most









caregivers were aged 50 or older (n=133, 83.2%), and had provided care for at least two years

(n=129, 64.4%). On average, they provided less than a full day of care, defined as 6 hours or

less of care each day (n=97, 60.6%). Most caregivers generally described themselves as in

"good" health or better (n=134, 83.8%). In terms of temperament type, the 160 participants were

categorized as follows: Guardians (n=120, 75%), Artisans (n=22, 13.8%), Idealists (n=16, 10%),

and Rationals (n=2, 1.3%). Most caregivers, regardless of gender, were Guardians possibly

because some characteristics of this temperament include that they are more apt to take care of

themselves and others around them. Guardians are first and foremost seen as administrators -

take charge and get things done. Guardians are also cooperative and seek solutions. Similar to

the general population (Alpine Media, 2003), most individuals seem to be Guardians.

Variables in Table 4-2 were selected based on a review of related studies from the

literature. These variables were also used for comparisons in the current population of

caregivers. Although not used for comparison for data analysis in the current study, age emerged

as a particularly important variable because many caregivers were still caring for minor children,

parents, and other family members. When comparing caregiver age, caregiver health and total

duration of care (all three ordinal variables), age and health had a significant correlation, and

total duration of care and health had a significant correlation. The younger the age of the

caregiver, the better health reported by that caregiver, and the longer the caregiver was providing

informal care, poorer health was reported.

Keirsey presented a distribution of temperaments drawn from a much larger population,

and these participants completed the online version of the Keirsey Temperament Indicator II. A

number of caregivers in this study had some degree of access to computers, but most probably

could not have completed the online version of the instrument due to inadequate computer









access, time constraints, and lack of assistance in completing the protocol. Future studies on

caregiving and self-efficacy may address the issue of first time parenting, although a different

type of self-efficacy scale is required because of levels of expectations and pressures from family

and friends to achieve skills. The dynamics in the home, especially among two working

professionals, change with the addition of a child.

Temperament and Self-Efficacy

Temperament and self-efficacy were the independent variables used in the study. Among

caregivers in this population, all temperaments showed similar levels of self-efficacy. No

significant differences existed in how confident caregivers felt about providing assistance to the

care receiver.

Table 4-2 shows a comparison of frequency of temperament types for caregivers in this

study and those in a separate study of the general population. Table 4-3 shows a comparison of

frequency of gender in each temperament type. Table 4-4 provides frequency and distributions

of Temperament Type for the general population, not just those who served as caregivers (Alpine

Media Corporation, 2002).

Table 4-4 shows the distribution of temperament type in this study compared to the

national database compiled from individuals who completed the online version of the Keirsey

instrument. This distribution is presented only for the purpose of visual inspection. Although

the frequencies vary between the two groups, Guardians emerged as the most prevalent

temperament type in both populations. Conversely, Rationals were the least prevalent

temperament type in both populations.

The mean self-efficacy score of 973.03 (SD=280.39) indicated that caregivers were above

average in their confidence in the caregiver role, perhaps because many of the caregivers in this









study were spiritual and had excellent social support systems. Self-efficacy scores ranged from

350 for the lowest score to 1,500 for the highest score, from a possible maximum score of 1,500.

A one-sample Kolmogorov-Smirnov Test for population distribution indicated that the test

distribution was normal (D=.33). Therefore, the distribution for the current population was

normal (i.e., no distinguishable outliers).

Research Questions

Research Question One

Does a significant association exist in "Total Scale Scores" on the Caregiving Self-

Efficacy Scale between temperament type as determined by the Keirsey Temperament

Indicator II?

No significant association existed in self-efficacy among the four temperament types. To

address this question, a one-way ANOVA was conducted on temperament type self-efficacy. No

significant association existed in the level of self-efficacy among the four temperament groups

(F=1.96, p=. 122) (Table 4-5).

Lack of a significant association may be explained in part by the fact that each

temperament category included both extrovert or expressive (E), and introvert or reserved (I)

characteristics. The E/I relationship dictates how individuals deal with significant others in the

outside world. In this population, whether a person is E/I may determine how that person relates

to those outside of the caregiver role, such as asking questions of physicians and other formal

health care providers, and in making medical decisions about the care recipient based on

interactions with formal health care providers (Keirsey, 1998). The E/I factor was not analyzed

in this population and should probably be analyzed separately. Since no temperament type

emerged as significantly different in level of self-efficacy, self-efficacy was used as an

independent variable (explanatory) to address research questions two through five.









Research Question Two

Does a significant association exist between "Total Scale Scores" on the Caregiving

Self-Efficacy Scale and daily duration of care provided by the caregiver?

A Spearman Rho Correlation was used, and no significant association existed in self-

efficacy for any of the six ranges (Appendix F) of time spent caring on a daily basis. To address

this question, a Spearman's rank order correlation was conducted with self-efficacy and daily

duration of care. No significant association was found in self-efficacy for any of the six ranges

(Appendix F) of time spent caring on a daily basis (r=-.048, P=.545) (Table 4-6). For

comparison purposes only, no significant association existed when a one-way ANOVA was used

(F=1.344, p=.249).

Self-efficacy was not a factor in how long an individual cares for someone on a daily basis.

Thus, an individual who spends a brief amount of time each day in the caregiving role feels as

confident as those who spend more time in the caregiving role.

Several factors may help explain this finding. Based on the review of literature and the

characteristics of the study population, caregivers who care for individuals for more time during

the day (i.e, 6 or more hours) often feel more confident because they have less difficulty in

caring for that person, compared to caregivers who spend a brief amount of time (i.e., 1 or 2

hours) with someone with a more severe illness. Also, those who spend fewer hours in the

caregiving role may also hold full time jobs outside the home, whereas those spending more

daily hours in caregiving may not work outside the home. In addition, caregivers who spend

more time each day with the care receiver may have found an adequate social support system

(i.e., caregiver meetings), as well as other sources of informal support, such as close friends,

neighbors, and family members.









Although not part of the analysis for research question (see Question #6), multivariate

analysis indicated that caregivers who were not related to the care receiver tended to have shorter

durations as a caregiver. The variable of duration of care was combined with self-efficacy,

temperament, total duration of care and relationship to care receiver.

Research Question Three

Does a significant association exist between "Total Scale Scores" on the Caregiving

Self-Efficacy Scale and total duration of care provided by the caregiver?

A one-way ANOVA was used to show that a significant association existed between self-

efficacy and total duration of care, both with the seven original duration ranges (F=2.504,

p=.024), and with the four duration ranges (F=3.49, p=.017) (Table 4-7). For comparison, a

Spearman Rho correlation was used with the four original duration ranges (r=-.002, P=.982).

Due to low number of selections for some of the response options, the category for total

duration of care was recorded from seven ranges to four ranges. The first two variables, "6

months," and "6-12" months," were measured as time less than 12 months. Categories three and

four were combined, as were categories five and six, based on frequency distributions. As

individuals continued in the caregiver role, self-efficacy waned similarly during the first and

second years, and similarly during the third and four years. Category seven, "5 years or more,"

was retained as a discreet category. Caregiver self-efficacy was highest before one year, and

after five years, of caregiving.

A one-way ANOVA with LSD post hoc analysis, conducted on self-efficacy and the total

duration of care, showed significance both with the seven original ranges (F=2.504, p=.024), and

with the four recorded ranges (reported below, F=3.49, p=.017).

Individuals often feel less stressed as they enter the caregiver role. Over time, stress

increases and caregivers often feel depressed, and a decline occurs in their health. Their









involvement in friendship circles may decrease because caregivers cannot leave their homes to

socialize. Also, during the first few years, caregivers may quit jobs to provide full-time care.

Eventually, they may decide to place the care receiver in an assisted living facility. A transition

occurs in getting to know the facility staff and helping the staff understand the needs of the care

receiver, which creates new stressors for caregivers. Caregivers generally reach their limit of

caregiving in the home after about five years, so transitioning into an assisted living facility may

be viewed as getting the situation under control.

Whether the care receiver resided in the home or not was not addressed as a research

question but, a t-test showed significance. Caregivers who cared for care receivers outside the

home had higher levels of self-efficacy.

Research Question Four

Does a significant association exist between "Total Scale Scores" on the Caregiving

Self-Efficacy Scale and intensity/difficulty of care provided by the caregiver?

A Spearman Rho Correlation was used to show a significant relationship between self-

efficacy and the degree of intensity/difficulty (ordinal) using the five original response options

from the instrument (two-tailed, r=-.184, p=.020) (Table 4-8). For comparison a one-way

ANOVA was used (F=1.480, p=.211).

Caregivers who reported low degrees of difficulty caring for their loved ones showed

higher levels of self-efficacy. Most caregivers described their responsibilities as "not difficult at

all," "a little difficult," or "difficult." Only a few described their responsibilities as "very

difficult" or "extremely difficult. However, as difficulty increased in the caregiving role, self-

efficacy declined.

Caregivers usually feel personally responsible for their loved ones. Even if they feel some

level of stress in the caregiver role, they feel a personal obligation and empathy to provide care.









Caregivers who provide care, such as assistance with Activities of Daily Living (ADL) versus

Instrumental Activities of Daily Living (ADL), often do not consider this type of assistance as

difficult or even as providing care, but merely as part of their role as a spouse, child, or close

family member (Arno et al., 1999).

Research Question Five

Does a significant association exist in self-efficacy scores as determined by "Total

Scale Scores" on the Caregiving Self-Efficacy Scale and caregiver health status?

A Spearman Rho Correlation was used to identify a significant relationship existed

between self-efficacy and caregiver health, using the five original ranges from the instrument

(two-tailed, r=-.159, P=.045) (Table 4-9). For comparison, a one-way ANOVA was used

(F=2.075, p=.106).

Caregivers who feel healthier cope better in the caregiver role, and they feel more

confident making important decisions for the care receiver. When caregiver health declines,

caregivers do not feel as confident that they can provide the quality of care needed for their loved

one. They may also feel that they cannot meet their own health needs due to the amount of time

required in the caregiving role. As their health declines, especially if their health was poor when

they began the caregiver role, caregivers may decide to place the care receiver in an assisted

living facility sooner than anticipated. This decision may produce both relief and guilt for not

continuing to care for their loved one. Caregivers may also feel fairly healthy compared to the

care receiver.

Research Question Six

Does a significant association exist between overall duration of care and temperament

type as determined by the Keirsey Temperament Indicator II, self-efficacy scores as









determined by "Total Scale Scores" on the Caregiving Self-Efficacy Scale, and relationship

to care receiver?

Significant associations existed between level of self-efficacy, one temperament type, and

two separate relationship categories to the care receiver (Table 4-10).

Among the four temperament types, self-efficacy level did not influence daily duration of

care. In terms of the four temperament types, Artisans were most likely to remain the longest in

the caregiver role. Among this population of caregivers, Artisans were the second most frequent

among the four temperaments, but small in number (n=22). Among the other three

temperaments, total duration in the caregiver role was not significantly different. As one

characteristic of the Artisan personality, they are more likely to follow a philosophy of living "in

the moment." Artisans enjoy life and seek resources that suit their needs (Keirsey, 1998).

Therefore, Artisans may be more resourceful in finding outlets for their stress in the caregiving

role, may not need formal types of support (i.e., attending caregiver meetings) and they may be

more willing to accept assistance from friends and family in managing care for the care receiver.

Two relationships between care receiver and caregiver also were significant, but in the

negative direction. First, if the care receiver was a friend or had a relationship other than the

options listed (spouse, parent, child, grandparent, in-law, or partner), duration of care tended to

be briefer. Perhaps some form of regret or a different level of frustration exists when the care

receiver is not a family member. Second, relationships in the "other" category included those

who provided respite care to families or to neighbors. The other category of relationships

seemed to indicate a more emotional attachment to the care receiver; therefore, care provided

was longer in duration.









Financial support may be a predictor of total duration of care. If the caregiver has

adequate financial resources, their total duration of care may be longer because of access to

formal caregivers (i.e., home care nurses). Caregiver satisfaction and confidence may be

implications to understanding caregivers for health care providers and their recommendations for

care receivers.

Summary

This chapter reported the results from examining responses of individuals serving in an

informal caregiver role by group type, gender, race, temperament type, age overall health status,

and duration of care. A population profile was generated showing the distribution of participants

by temperament type, total self-efficacy score, and distribution of total time in the caregiver role.

Most caregivers were White/Caucasian females, older than age 50, who cared for at least one

individual.

Bivariate analysis indicated all four temperament types showed comparable self-efficacy

levels. No one temperament produced a higher level of self-efficacy than any of the other three.

Total level of self-efficacy did not affect amount of time spent on a daily basis in the caregiver

role, perhaps because some individuals caring for a person one or two hours each day also held

full time jobs outside the home, creating an added stressor.

Total level of self-efficacy was significantly affected by total time (duration of care) in a

caregiver role, degree of intensity/difficulty in the caregiver role, and self-reported caregiver

health. Caregivers felt more confident very early on, possibly because of higher levels of social

support, and also after five years in the caregiver role, perhaps due to comfort level and other

assistance received in caring for their loved one. Most caregivers did not report that caring for a

loved one was "very difficult" or "extremely difficult," but the more difficulty in the caregiver