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Family Caregiver Quality of Life in a Pediatric Oncology Setting

Permanent Link: http://ufdc.ufl.edu/UFE0022628/00001

Material Information

Title: Family Caregiver Quality of Life in a Pediatric Oncology Setting
Physical Description: 1 online resource (126 p.)
Language: english
Creator: Mueller, Michael
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2008

Subjects

Subjects / Keywords: cancer, caregiver, caregiving, children, demands, hassles, life, parents, quality, stress
Pharmaceutical Outcomes and Policy -- Dissertations, Academic -- UF
Genre: Pharmaceutical Sciences thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: Research in the field of family caregiver quality of life (QOL) is growing but few studies have addressed family caregivers of children with cancer and few have been guided by a theoretical framework. This research looked to examine what factors may influence QOL of family caregivers of children with cancer. Specific focus was placed on how demands of caregiving, hassles of patient medication administration and the appraisal of caregiving stress affect the family caregiver?s QOL. The variables tested in the study were driven by a cognitive appraisal model of stress. Family caregivers filled out questionnaires that included subscales from (1)the Caregiver Quality of Life Index--Cancer, (2) the Care of My Child With Cancer (demands), (3) the Family Caregiver Medication Administration Hassles Scale (hassles) and (4) the Appraisal of Caregiving Scale (stress). Demographics were also collected on the caregivers, the patients and the patient's disease state. The response rate was 90.91% (50 out of 55 who were told about the study). A 3-step multistage path analysis determined the path coefficients for the final model. The first regression showed that demands and hassles accounted for 51% of the variance in stress. The second regression showed demands and hassles accounted for 47% of the variance in family caregiver QOL. The final regression showed demands, hassles and stress accounted for 71% of the variance in family caregiver QOL with demands and stress each contributing significantly. The final model was partially mediated. Hassles effect on QOL was fully mediated through stress. Demands had some mediation through stress along with a direct effect on QOL. Stress had a direct effect on QOL. Hassles have a negative influence on QOL mediated through the caregiver's stress appraisal. Demands of caregiving and stress were both found to have direct negative impacts on QOL. This questionnaire can be used to help health care professionals identify areas of stress impacting the family caregivers. It will then allow for focused education or support that may be needed to help the family caregivers reduce their stress and make them an integral part of the patient's health care team.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Statement of Responsibility: by Michael Mueller.
Thesis: Thesis (Ph.D.)--University of Florida, 2008.
Local: Adviser: Kimberlin, Carole L.
Electronic Access: RESTRICTED TO UF STUDENTS, STAFF, FACULTY, AND ON-CAMPUS USE UNTIL 2010-08-31

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2008
System ID: UFE0022628:00001

Permanent Link: http://ufdc.ufl.edu/UFE0022628/00001

Material Information

Title: Family Caregiver Quality of Life in a Pediatric Oncology Setting
Physical Description: 1 online resource (126 p.)
Language: english
Creator: Mueller, Michael
Publisher: University of Florida
Place of Publication: Gainesville, Fla.
Publication Date: 2008

Subjects

Subjects / Keywords: cancer, caregiver, caregiving, children, demands, hassles, life, parents, quality, stress
Pharmaceutical Outcomes and Policy -- Dissertations, Academic -- UF
Genre: Pharmaceutical Sciences thesis, Ph.D.
bibliography   ( marcgt )
theses   ( marcgt )
government publication (state, provincial, terriorial, dependent)   ( marcgt )
born-digital   ( sobekcm )
Electronic Thesis or Dissertation

Notes

Abstract: Research in the field of family caregiver quality of life (QOL) is growing but few studies have addressed family caregivers of children with cancer and few have been guided by a theoretical framework. This research looked to examine what factors may influence QOL of family caregivers of children with cancer. Specific focus was placed on how demands of caregiving, hassles of patient medication administration and the appraisal of caregiving stress affect the family caregiver?s QOL. The variables tested in the study were driven by a cognitive appraisal model of stress. Family caregivers filled out questionnaires that included subscales from (1)the Caregiver Quality of Life Index--Cancer, (2) the Care of My Child With Cancer (demands), (3) the Family Caregiver Medication Administration Hassles Scale (hassles) and (4) the Appraisal of Caregiving Scale (stress). Demographics were also collected on the caregivers, the patients and the patient's disease state. The response rate was 90.91% (50 out of 55 who were told about the study). A 3-step multistage path analysis determined the path coefficients for the final model. The first regression showed that demands and hassles accounted for 51% of the variance in stress. The second regression showed demands and hassles accounted for 47% of the variance in family caregiver QOL. The final regression showed demands, hassles and stress accounted for 71% of the variance in family caregiver QOL with demands and stress each contributing significantly. The final model was partially mediated. Hassles effect on QOL was fully mediated through stress. Demands had some mediation through stress along with a direct effect on QOL. Stress had a direct effect on QOL. Hassles have a negative influence on QOL mediated through the caregiver's stress appraisal. Demands of caregiving and stress were both found to have direct negative impacts on QOL. This questionnaire can be used to help health care professionals identify areas of stress impacting the family caregivers. It will then allow for focused education or support that may be needed to help the family caregivers reduce their stress and make them an integral part of the patient's health care team.
General Note: In the series University of Florida Digital Collections.
General Note: Includes vita.
Bibliography: Includes bibliographical references.
Source of Description: Description based on online resource; title from PDF title page.
Source of Description: This bibliographic record is available under the Creative Commons CC0 public domain dedication. The University of Florida Libraries, as creator of this bibliographic record, has waived all rights to it worldwide under copyright law, including all related and neighboring rights, to the extent allowed by law.
Statement of Responsibility: by Michael Mueller.
Thesis: Thesis (Ph.D.)--University of Florida, 2008.
Local: Adviser: Kimberlin, Carole L.
Electronic Access: RESTRICTED TO UF STUDENTS, STAFF, FACULTY, AND ON-CAMPUS USE UNTIL 2010-08-31

Record Information

Source Institution: UFRGP
Rights Management: Applicable rights reserved.
Classification: lcc - LD1780 2008
System ID: UFE0022628:00001


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8861d3d61945add2bf39f73e4125c4ae
7eb860a63b9a1a966a1c68fd85a1a8810b48eec5







FAMILY CAREGIVER QUALITY OF LIFE INT A PEDIATRIC ONCOLOGY SETTLING


By

MICHAEL JOHN MUJELLER



















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

2008





































O 2008 Michael John Mueller




































This dissertation is dedicated to my beautiful daughter, Olivia Grace, and my loving wife,
Brooke, who I love now, forever, always.









ACKNOWLEDGMENTS

I would like to thank my wife, Brooke for her unending love and undying support; she has

been an inspiration to me since day one. I would also like to thank my family: my parents, Louis

and Candy Mueller; my brother, Stephen; my older sister Tina and her family; as well as my

younger sister, Sarah; for their love and support throughout this entire process. This could also

not have been accomplished without the support of my in-laws, Joyce Conner Eary and John and

Donna Loud.

For their assistance, I would like to thank the students, faculty and staff of the

Pharmaceutical Outcomes and Policy Department. I would especially like to thank Drs. Richard

Segal, David Brushwood, and John Graham-Pole for their advice and encouragement. Without

the guidance of Dr. Carole Kimberlin, I would not have completed this great accomplishment -

for this I am deeply indebted to her.












TABLE OF CONTENTS


page

ACKNOWLEDGMENT S .............. ...............4.....


LI ST OF T ABLE S ............ ...... ..__ ...............8...


LIST OF FIGURES .............. ...............10....


AB S TRAC T ............._. .......... ..............._ 1 1..


1 INTRODUCTION ................. ...............13.......... ......


Problem Statement ................. ...............13.................

Background .................. ...............13.......... .....
Shifts in Health Care .............. ...............13....
Value of Caregiving .............. .....................14
Pediatric Cancer Impact .............. ...............15....
Significance of the Study ................. ...............16................
Research Objectives............... ...............1


2 THEORETICAL FRAMEWORK ................. ...............18........... ....


Introducti on ................... ..... ...... .... ...............18.......

Cognitive Appraisal Model of Stress ................. ........... ...............18.....
Lazarus and Folkman Appraisal Model of Stress ................. .............................19
Modified Model of Stress ................. ...............21................

Cognitive Appraisal of Stress Research ..................... ... .... ....... .......2
Cognitive Appraisal of Stress in Caregivers of Pediatric Oncology Patients ................... ......3 1
Research Questions............... ...............3


3 LITERATURE REVIEW ................. ...............36................


Cancer Caregiver Quality of Life Research ................. ...............36...............
Quality of Life .................. ...............37................
Measuring Quality of Life ................. ...............3.. 8.............
Global instruments .............. ...............38....
Generic instruments................ .............3
Disease-Specific instruments .............. ...............39....
Additional Study Characteristics ................ ... ............ ...............40......
Factors Associated with Caregiver Quality of Life ................. ................. ..........41
Patient characteristics ................. ...............41........... ....
Disease related factors ................. ...............42........... ....

Caregiver characteristics .............. ...............43....
Limitations in the Current Research ................. ............. ...............44.....

Caregiver Quality of Life in a Pediatric Oncology Setting ................. ................ ...._..46












4 METHODOLOGY ................. ...............51..._.__ ......


Introducti on ................... .. ....... .. .......... .............5

Caregiver Quality of Life Index Cancer ............... ...............51.......... ...
Family Caregiver Quality of Life ........._._. .......... ...............56...
The Care of My Child With Cancer ................... ... .....__ ........ .......... ..... 5
The Family Caregiver Medication Administration Hassles Scale ................. ...............58
Appraisal of Caregiving Scale..................... .... ..... .........5
Study Constructs Dependent and Independent Variables............... ...............6
Family Care giver Burden .............. ...............61....
Family caregiver demands .............. ...............62....
Medication administration hassles .............. ...............62....
Stress Appraisal .............. .. ...... ...............62
Family Caregiver Quality of Life ................ ....___ ...............63.....
Subj ects ............ ..... .. ...............63...
Proc edure s............ ..... .._ ...............63...
Statistical Analysis......................... ...........6
Internal Consistency Reliability .............. ...............65....
Convergent Validity ..................... ...............65.
Path Analysis and Mediation Testing ....__ ......_____ .......___ ...........6
Tests of association .............. ...............65....
Path analy si s............... ...............66
Sam ple Size .............. ...............68....

5 RE SULT S ............ _...... ._ ...............71...


Family Caregiver Demographics ............_ ..... ..__ ...............71...
Patient and Disease Characteristics .............. ... ...............72..

Cognitive Appraisal of Stress Model Components .............. ...............73....
Family Caregiver Quality of Life ............ .....___ ...............73.
Demands of Caregiving ............ _....... .._ ...............75...
Hassles of Medication Administration ................ .....___............... ........ ...77

Appraisal of Care giving ................. ...............77...
Psychometric Properties of the CQOLC ............ .....___ ...............79..
Internal Consistency Reliability .............. ...............79....
Convergent Validation................... ..... ...............7
Evaluation of the Cognitive Appraisal of Stress Model ............__.....___ ...............80
Evaluating CQOLC Correlations .............. ........ ...... .............8
Stress Regressed on Demands and Hassles Hypothesis 1 .............. ....................8
Quality of Life Regressed on Demands and Hassles Hypothesis 2. ...........................81
Quality of Life Regressed on Demands, Hassles and Stress Hypothesis 3 .................8 1
Construction of the Final Model ........ ................. ...............82 ....
Summary of Results............... ...............8

6 DI SCUS SSION ................. ...............92................


Overview. ........_................. ...............92 .....












Discussion of Findings .............. .............. .............9
Psychometric Testing of the CQOLC ................. ...............92........... ...
Caregiver Quality of Life ................. ...............93.......... ....
Demand s of Care giving ................. ...............94................
Medication Administration Hassles .............. ...............95....
Stress Appraisal .............. ...............96....
Family Caregivers .............. ...............96....
Theoretical Framework .............. ...............97....
Study Limitations............... .. ..................9
Implications for Health Care Providers ................. ...............100........... ...
Future Research .............. ...............10 1...


APPENDIX


A FAMILY CAREGIVER QUALITY OF LIFE AND THE IMPACT OF THE
CAREGIVING ROLE QUESTIONNAIRE ................. ...............103................

B CONSENT FORM FOR STUDY PARTICIPANTS ................. .............................114


LIST OF REFERENCES ................. ...............122................


BIOGRAPHICAL SKETCH ................. ...............126......... ......










LIST OF TABLES


Table page

Table 3-1. Studies of quality of life of care givers of cancer patients .............. ....................4

Table 4-1. List of items from the original CQOLC that were amended to fit the target
popul ati on of family caregivers of pedi atri c oncology pati ents ................. ................ ...69

Table 4-2. Study constructs and sources for data collection. ................. ....___ ................ 69

Table 5-1. Family caregiver demographics .............. ...............84....

Table 5-2 Patient and disease characteristics ........._.. ............ ...............85.

Table 5-3. Caregiver perceptions on the primary components of the cognitive appraisal of
stress model............... ...............86.

Table 5-4. Mean, standard deviation, and median score for each item on the modified
CQOLC. Higher scores suggest a lower quality of life. All items range from 0 to 4......86

Table 5-5. Mean, standard deviation, and median score for the total demand score of each
item ((effort time)1/2) On The Care of My Child With Cancer. Higher scores
suggest higher demands. Item scores ranged from 1 to 5. ................ ..................8

Table 5-6. Mean, standard deviation, and median score for the time component of each item
on The Care of My Child With Cancer. Higher scores suggest higher demands. Item
scores ranged from 1 to 5 ................. ...............87...............

Table 5-7. Mean, standard deviation and median score for the effort/difficulty component of
each item on The Care of My Child With Cancer. Higher scores suggest higher
demands. Item scores ranged from 1 to 5. ............. ...............88.....

Table 5-8. Mean, standard deviation and median for each item on Family Caregiver
Medication Administration Hassles Scale. ............. ...............88.....

Table 5-9. Mean, standard deviation and median score for each item on the Appraisal of
Caregiving instrument ................. ...............88.................

Table 5-10. Cronbach's alpha results for this study and the original instrument development
and validation by Weitzner et al. ............. ...............89.....

Table 5-11. Correlations and p values among family caregiver quality of life and the patient,
caregiver and disease characteristics. ............. ...............89.....

Table 5-12. Path coefficients for Hypothesis 1............... ...............89...

Table 5-13. Path coefficients for Hypothesis 2............... ...............90...











Table 5-14. Path coefficients for Hypothesis 3............... ...............90...

Table 5-15. Decomposition of the total associations of predictor variables with quality of
life ............. ..................9 1.











LIST OF FIGURES


Figure page

Figure 2-1. Cognitive appraisal model of stress for caregivers of pediatric oncology patients....34

Figure 2-2. Exogenous antecedent variables in the model .............. ...............34....

Figure 2-3. Endogenous antecedent variables added to the model. ................ ............ .........35

Figure 2-4. Mediator variable (caregiver appraisal) added to the model ................. ................. 35

Figure 4-1. Proposed model of family caregiver quality of life ................. ......_.. ........._...70

Figure 5-1. Summary of path model of family caregiver quality of life. .........._.__... .................90









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

FAMILY CAREGIVER QUALITY OF LIFE INT A PEDIATRIC ONCOLOGY SETTLING

By

Michael John Mueller

August 2008

Chair: Carole Kimberlin
Major: Pharmaceutical Sciences

Research in the Hield of family caregiver quality of life (QOL) is growing but few studies

have addressed family caregivers of children with cancer and few have been guided by a

theoretical framework.

This research looked to examine what factors may influence QOL of family caregivers of

children with cancer. Specific focus was placed on how demands of caregiving, hassles of

patient medication administration and the appraisal of caregiving stress affect the family

caregiver' s QOL. The variables tested in the study were driven by a cognitive appraisal model

of stress.

Family caregivers filled out questionnaires that included subscales from (1)the Caregiver

Quality of Life Index Cancer, (2) the Care of My Child With Cancer (demands), (3) the Family

Caregiver Medication Administration Hassles Scale (hassles) and (4) the Appraisal of

Caregiving Scale (stress). Demographics were also collected on the caregivers, the patients and

the patient' s disease state. The response rate was 90.91% (50 out of 55 who were told about the

study).

A 3-step multistage path analysis determined the path coefficients for the Einal model. The

first regression showed that demands and hassles accounted for 5 1% of the variance in stress.









The second regression showed demands and hassles accounted for 47% of the variance in family

caregiver QOL. The final regression showed demands, hassles and stress accounted for 71% of

the variance in family caregiver QOL with demands and stress each contributing significantly.

The final model was partially mediated. Hassles effect on QOL was fully mediated

through stress. Demands had some mediation through stress along with a direct effect on QOL.

Stress had a direct effect on QOL.

Hassles have a negative influence on QOL mediated through the caregiver's stress

appraisal. Demands of caregiving and stress were both found to have direct negative impacts on

QOL. This questionnaire can be used to help health care professionals identify areas of stress

impacting the family caregivers. It will then allow for focused education or support that may be

needed to help the family caregivers reduce their stress and make them an integral part of the

patient' s health care team.









CHAPTER 1
INTTRODUCTION

Problem Statement

One of the most significant shifts in health care in recent years has been the migration of

care from the hospital setting to the home or ambulatory setting. A number of factors have

contributed to this shift, including pressures by managed health care organizations to limit

hospital days as well as improved treatment options that no longer require in-patient stays. With

this shift out of the hospital and into the home or outpatient setting there generally comes a

transfer of care for the patient from trained professionals to the family or guardian(s) of the

patient, with one or more individuals taking on the role of the patient' s primary family caregiver.

This transfer of care can often have a profound effect on a number of aspects of the family

caregiver' s life including their overall quality of life.

Research is growing in the field of family caregiver quality of life, but few studies have

addressed the effects of caregiving on family caregivers of children with cancer. The maj ority

of studies have included adult patient populations with a maj or focus on Alzheimer and dementia

patients. A theoretical foundation to help bring together the constructs of the study into a

meaningful conceptual framework has guided even fewer studies. This proj ect looked at the

quality of life of family caregivers of children with cancer and used a cognitive appraisal model

of stress to identify how antecedent and mediating variables combine to affect the family

caregiver' s quality of life.

Background

Shifts in Health Care

The shift in the care of patients from the hospital to the home has forced family caregivers

to face tasks that many are ill prepared to handle. Arno, Levine and Memmott (1999) noted that









not only are caregivers unprepared for their new roles but most are never "offered appropriate

follow-up services, reevaluation of care arrangements or referrals to community services."

The roles of the family caregiver can include symptom management, administration of

medications, equipment management, assistance with activities of daily living and acting as a

patient advocate to name just a few (Laizner, Yost, Barq & McCorkle, 1993; Schoenfelder,

Swanson, Specht, Maas & Johnson, 2000; Given, Given & Kozachik, 2001; Aranda & Hayman-

White, 2001; Haley, 2003; Glajchen, 2004). Tasks undertaken by family caregivers can be

identified as either direct care or indirect care. Direct care encompasses tasks that are carried out

with the patient directly while indirect care tasks are done on behalf of the patient by the family

caregiver, such as paying bills (Given et al., 2001). The role of the family caregiver changes as

the condition and treatment strategies of the patient change.

Family caregivers, along with assuming their new roles and undertaking these new tasks,

must also deal with their usual daily life responsibilities as well. This collision of caregiving

roles and daily life responsibilities can often have a detrimental effect on the family caregivers,

affecting their quality of life including their physical, social, financial and psychological well-

being (Edwards & Ung, 2002).

Value of Caregiving

Aside from the assistance that family caregivers offer to the patient they also bring relief to

the health care system in terms of the freeing up of provider time and financial constraints on the

health care system that often accompany the treatment of chronic conditions. Neglecting the

needs of the family caregiver and ignoring their quality of life ultimately affects the caregiver,

the patient and the health care system. Because of this, treatment strategies need to address not

only the concerns of the patient but those of the family caregiver as well. The World Health

Organization has noted in their work on palliative care of cancer patients that psychological









support should be provided to both the patient and the family (World Health Organization

[WHO], 1990).

The financial impact that family caregivers have on the medical field is difficult to assess.

Arno and colleagues (1999) and Arno during a lecture on the economic value of informal

caregivers (2002) attempted to place a dollar figure on the value of informal caregiving. Mid-

range estimates suggested that there were approximately 27.3 million family caregivers

(providing assistance to adult patients) in the United States during the time of their analysis.

Based on their calculations, they estimated that family caregivers provided the health care field

with $257 million in "free" health care services. This was well above the estimates for

professional care provided in the home setting ($32 million) or in nursing home environments

($92 million). While these figures represent family caregivers of adult patients, the impact of

family caregivers of children with chronic conditions can be assumed to be as significant if not

greater since children will often require more around the clock care compared to adult patients.

Pediatric Cancer Impact

Children (those under the age of 20) account for approximately 30% of the population in

the United States (Ries, Percy & Bunin, 1999). When it comes to children, cancer is the leading

disease in terms of mortality rates. In children aged 1 to 14, cancer is the second leading cause

of death behind accidents (American Cancer Society, 2002).

Projections for 2007 suggest that approximately 10,000 children under age 15 will be

diagnosed with cancer. Of those diagnosed nearly 80 percent will become long-term survivors

of 5 years or more. This number has risen dramatically since before the 1970s when the 5 year

survival rate was below 50% (American Cancer Society, 2007).

The maj ority of cancers found in children are a form of leukemia. Other cancers that

children face include; brain tumors and neuroblastomas, bone cancers, lymphomas and kidney









and liver cancers. While adult cancers have been attributed mostly to lifestyle factors, little is

known about the cause of children cancers.

The incidence for genders is fairly similar when looking at all cancers for children. Data

indicate that one in every 300 boys will develop cancer while girls have an incidence rate of one

in 333. When broken down by ethnic groups, the rates for white children are higher than all

other races (Ries et al., 1999).

The importance of the role that family caregivers provide to the health care community and

their impact on the care of the patient is undeniable. While the number of children afflicted with

cancer is low compared to disease states affecting adults, the need remains to provide them the

best care possible, including care by parents and other family members. A desire to understand

the needs of children with cancer and their family caregivers provided the catalyst for the

development and execution of this study.

Significance of the Study

There are a number of reasons why this study is needed and what contributions it will

bring to the family caregiving and pediatric oncology communities. The first of these is to give

the family caregivers of children with cancer a voice regarding what impact the Eight for their

child's health is having on their lives both physically and mentally. Research has shown how

family caregivers of adults with Alzheimer' s, dementia and other disease states are impacted by

their roles; but there is little literature to paint the same picture for family caregivers of children,

specifically those family caregivers of children with cancer. This study will begin to bring to the

forefront the types of activities family caregivers handle and struggle with by understanding the

demands and hassles these caregivers face and how these impact the daily stress in their lives and

their quality of life.









Secondly this study provides a theoretically based look at the impact that caregiving has on

family caregivers who have not been studied by previous research. While a cognitive appraisal

of stress model has been tested in adult patient populations, it has not been utilized in a pediatric

setting.

Thirdly this study adds a component that has not been well studied in family caregivers -

the stress involved in managing medication therapy of the patient. The review of literature found

that none of the studies identified contained a measure of medication administration hassles

included in this study, as a predictor of family caregiver quality of life.

Research Objectives

This research examined the quality of life of family caregivers of children diagnosed with

cancer. To better understand the quality of life of family caregivers of children with cancer and

how their quality of life is influenced by various stressors, we established two primary obj ectives

for this study. The first obj ective was to establish the validity and reliability of a quality of life

instrument for use in a population of family caregivers of children with cancer. The second

obj ective was to test a cognitive appraisal model of stress in the same population in order to

identify factors that influence family caregiver quality of life. Specific focus will be on how

demands of caregiving, hassles of medication administration and the appraisal of stress related to

caregiving affect the family caregiver's quality of life.









CHAPTER 2
THEORETICAL FRAMEWORK

Introduction

The purpose of this chapter is to establish the theoretical framework used to better

understand how the quality of life of family caregivers of children with cancer is influenced by

selected factors. The first part of the chapter looks at how models of cognitive appraisal of stress

have evolved over the years. The next section will be a review of studies that have used models

of cognitive appraisal of stress as their foundation. The third section of the chapter will provide

in detail the model that was used in this study and the specific variables that were included in the

model for measurement purposes. After describing the model used in this study, the final section

outlines the five research questions that were established in order to meet the two obj ectives of

this study which were 1) to validate an instrument to measure the quality of life of family

caregivers of children with cancer and 2) to identify factors that predict a caregiver' s overall

quality of life based on a cognitive appraisal model of stress.

Cognitive Appraisal Model of Stress

The conceptual framework for this study was a cognitive appraisal model of stress.

Origins of the model come from the combined works of Lazarus (1966), Lazarus and Folkman

(1984), Lazarus (2000), Scott, Oberst and Dropkin (1980) and finally the model proposed by

Carey, Oberst, McCubbin and Hughes (1991). The various formulations of the Lazarus model

posit that individuals (in the case of this study family caregivers) are constantly evaluating

relationships with the environment with respect to implications for personal well-being (Lazarus,

2000). This evaluative process is the "cognitive appraisal" component of the model and it allows

individuals to ascertain how well they have responded to environmental events, such as a cancer










diagnosis. The cognitive appraisal process is continuous and leads to an individual's

psychological or physiological response to the environmental event.

Lazarus and Folkman Appraisal Model of Stress

The initial model developed by Lazarus (1966) and then revised by Lazarus and Folkman

(1984) identified a set of antecedent variables that influence a person's appraisal of a given

situation or event. These antecedent (or causal) variables were broken into two main sets;

environmental and personal variables. Person variables are tied to an individual's values, their

commitments and beliefs and what Lazarus and Folkman called an existential sense of control.

Environmental variables focus on demands (situational), constraints, resources, ambiguity of

harm and imminence of harm. Together the effects of these person and environment variables

have an influence on how an individual appraises an event or situation.

Lazarus and Folkman identified appraisal as operating in a mediating fashion between the

person/environment factors and the immediate and long-term effects that individual's

experience. Lazarus defined appraisal as the evaluative product of appraising which itself was

defined as the act of making an evaluation (2000). In their initial work Lazarus and Folkman

(1984) separated appraisals into primary and secondary appraisals.

Primary appraising answers the question of "what does this mean to me?" Each person

reacts differently to a particular situation and must decide whether or not it is necessary for them

to react or respond to that situation or event. Lazarus identified that in order for a person to

decide whether what is happening to them is relevant or not they weigh it against their values,

goal commitments, beliefs about self and world and situational intentions (2000). Of these

values, beliefs, commitments and intentions, Lazarus saw goal commitments as the most

influential. He noted that if "there is no goal commitment, there is nothing of adaptational

importance at stake in an encounter to arouse emotions" (2000).









The idea of goal commitments is a relevant concept that has significant meaning to family

caregivers of pediatric patients fighting cancer or any other chronic condition. Lazarus viewed

goal commitments as the inner drive of a person to work hard at achieving a goal no matter the

obstacles or adversity that individual faced. This view of goal commitments, as doing whatever

it takes, goes hand in hand with a parent' s need to protect their child or help them when in need,

no matter the cost, both personally and financially.

While primary appraising answers the question of "what does this mean to me", secondary

appraising asks the questions of "Do I need to respond to this situation and if so what can be

done?" This component of the cognitive appraisal model of stress is focused on what can be

done to handle what Lazarus called a "troubled person-environment relationship" (2000).

Individuals must decide what coping options are available to them and at the same time also

decide whether or not those options can be acted upon or whether there are social and/or

intrapsychic constraints in place that do not allow the individual to react to the situation/event.

In his writings Lazarus was clear to point out that the designations of "primary" and

"secondary" do not signify a level of increased importance between the two types of appraising.

Thus primary does not signify that it is more important than secondary. Together the two types

of appraising allow for a complete understanding of the situation that will allow for the

individual to cope with the situation in the most efficient manner possible. Lazarus spoke of an

"active interplay" between the two appraisals.

The appraising process that individuals go through leads to a reaction to, or appraisal of,

the situation. Lazarus distinguished between appraising, which is the process of making an

evaluation of an event/situation, and appraisal which is the resulting reaction born from the










appraising process. In terms of appraisals there are three main classifications: benign, beneficial

and stressful.

Benign appraisals have no impact on the individual as the event is viewed as neither

positive nor negative. A positive reaction leads to a beneficial appraisal of the situation/event.

Finally the reaction can be viewed in a negative connotation leading to what is termed a stressful

appraisal. A stressful appraisal can itself fall into one of three classifications. The classifications

are (1) harm or loss, (2) threat and (3) challenge. Harm or loss corresponds to damage that has

already been done. Threats signify that damage may occur but at the present it has not. Finally,

challenges are obstacles or events that may be difficult to overcome but are not immediately

viewed as impossible to surmount.

Modified Model of Stress

Following in the footsteps of Lazarus and other stress and coping researchers Scott, Oberst

and Dropkin (1980) developed their own cognitive appraisal model of stress. Their goal was to

develop a theoretical framework to be used for studies within an acute care cancer center focused

on both patients and caregivers (Scott et al., 1980). The model has similar components to that of

the models by Lazarus (1966) and Lazarus and Folkman (1984) but has some maj or differences

as well.

One of the most important components of the Scott, Oberst, Dropkin (SOD) model that ties

it to that of Lazarus and Folkman' s work is the underlying assumption that the entire process of

stress-coping is an ever-changing process that is continually adjusting to the event or situation

based on the individual's appraising and coping. Backer et al (2000) point out additional

similarities between the two theories and the maj or assumptions inferred by the researchers.

They note that the works of Lazarus and Folkman and that of Scott et al. infer that the experience

of stress is the result of a cognitive process and that this cognitive process leads to an assessment









that the demands of a given situation or event exceed current resources available to the

individual and therefore produce stress.

A maj or difference in the models that Backer and colleagues (2000) identified has to do

with an individual's perception of anxiety. They point out that in the eyes of SOD model,

anxiety is initially experienced by every individual and then transformed into more specific

emotions following the appraisal of the situation/event while Lazarus and Folkman felt that

anxiety was just one of many emotions that individuals experienced after the appraisal process.

To Lazarus and Folkman anxiety may or may not occur while Scott and colleagues felt everyone

experiences anxiety when under stress.

Along with these similarities and differences in the maj or assumptions of both of these

theoretical models there are also differences in the components included in the SOD model and

some of the definitions of variables that are found in the SOD model and the model developed by

Lazarus and Folkman.

As described above the maj or components of the Lazarus and Folkman model of stress-

coping include an initial event or situation, person and environmental variables, primary and

secondary appraising, coping and then finally an immediate or long term effect. In their work,

Scott, Oberst and Dropkin had most of these variables within their model but the model was later

expanded. Oberst and team (1991) included a "self care burden" variable for patients while

Carey and colleagues (1991) added a "caregiver burden" variable for caregivers. Even though

many of the variables appear to be similar in the separate models, definitions have some

variability

Like the Lazarus and Folkman model, the SOD model begins with the occurrence of an

event or situation that an individual must react to or appraise to determine its relevance and need









for response by the individual. The appraising process is influenced by what Oberst et al. (1991)

identified as three initial antecedent categories. These three categories encompassed illness

factors, personal factors and resources (Lazarus and Folkman had only "personal" and

"environmental" categories).

In the study by Oberst, Hughes, Chang and McCubbin (1991), they identified illness

factors as those tied specifically to the disease, including how distressing the patient felt the

symptoms were, how dependent the patients felt, the perceived level of seriousness of the disease

and the length of time the patient had been ill. Personal factors identify demographics of the

patients including such measures as their age, education and gender. The Einal category of

resources was comprised of socioeconomic status of the patient and the level of family hardiness.

Family hardiness was conceptualized as "the family's internal strengths and durability" (1991).

Lazarus and Folkman showed the initial antecedent variables in their model directly

impacting the appraising process while in the SOD model that Oberst and colleagues used in

their 1991 work they added a mediating factor between the initial antecedent variables and the

appraising process. This new variable was identified as self-care burden and was defined as the

product of both self care demands, that is demands related to taking care of oneself, and the

difficulty associated with dealing with these demands.

The next component of the SOD model is the appraising process itself. Like Lazarus and

Folkman, the work of Scott, Oberst and Dropkin subdivided appraising into primary and

secondary forms. Scott and colleagues however had a different concept for how primary and

secondary appraising were defined. They also believed that coping was a part of the appraising

process rather then a separate variable as Lazarus and Folkman conceptualized it.









Primary appraising focuses on the evaluation of the stressor itself and its personal meaning

to the individual. The primary appraising process results in one of three appraisals of stress.

These results are identical to the ones outlined by Lazarus and Folkman: 1) irrelevant/benign

(that is having no impact on the individual), 2) positive (beneficial to the individual) and 3)

stressful (having a possible negative impact on the individual). Primary appraisals resulting in a

stressful perception of the stressor can be further broken down into harm or loss, threats or

challenges. These categories follow the Lazarus and Folkman model.

While primary appraising in the SOD model is similar to that of Lazarus and Folkman' s

work, secondary appraising is different. Scott and colleagues identified secondary appraising as

focusing on the "initial coping strategies and their effectiveness in neutralizing the stress

situation" (1980). While Lazarus and Folkman saw secondary appraising as asking the question

"what can be done?", Scott Oberst and Dropkin saw the question being asked during secondary

appraising as "how well did this coping strategy work and what if anything needs to be done next

to alleviate the stress?"

The outcome of the model is an adaptation of the individual to the stressor. Scott and

colleagues saw three potential outcomes to the entire stress-coping process a fluctuation of

emotion, a fluctuation of endocrine profile or a behavioral response. They also noted "the

ultimate adaptation is unique for each individual and occurs within a range of effectiveness from

maintenance of ideal integrity to death" (1980).

Cognitive Appraisal of Stress Research

A number of researchers have conducted studies using models based on the work of

Lazarus and Folkman and their stress model. Northouse and colleagues conducted a study based

on this model with a focus on both cancer patient quality of life and caregiver quality of life

(2002). Additionally there have been a number of studies that have based their theoretical

24









framework on the works of both Lazarus and Folkman and Scott, Oberst and Dropkin that have

focused on either caregivers alone or patients and caregivers within the same study (Carey et al.,

1991; Northouse, Mood, Templin, Mellon, & George, 2000; Northouse, Templin, & Mood,

2001).

In a study based on the theoretical work of Lazarus and Folkman, Northouse and

colleagues (2002) looked at the quality of life of women with recurrent breast cancer and also the

quality of life of their family caregivers. In the study a total of 189 women and their caregivers

completed a battery of instruments.

The antecedent variables included person factors (demographics, self-efficacy and current

concerns), social factors (family hardiness and social support) and illness-related factors

(symptom distress, stage of disease and disease-free interval). Appraisal was the mediating

factor in the study and included measures of appraisal of illness/caregiving, uncertainty and

hopelessness. The outcome variable was the quality of life of both the patient and the caregiver.

In a slight change from Lazarus and Folkman's original model, Northouse predicted that the

illness-related factors "would have a direct effect on each person's QOL and an indirect effect on

their quality of life through the appraisal variables" (2002).

In this study the models accounted for 80.6% of the patient' s mental health quality of life

and 81.2% of the caregiver' s mental health. Looking at physical quality of life the model

accounted for 71.5% in the patient population and 71.7% in the caregiver population. Focusing

specifically on caregiver QOL, the results of the study showed that personal factors (family

member' s education, caregiving efficacy and current concerns) had a significant direct effect on

at least two of the appraisal variables, while caregiver efficacy and current concerns had a direct

effect on all three appraisal variables. Each of these factors also had a significant indirect effect









on mental QOL. Only caregiving efficacy had an indirect effect on physical QOL while current

concerns had a significant direct effect on physical QOL.

Of the social factors measured, only the caregiver' s assessment of family hardiness showed

any significant results, having a direct effect on caregiver hopelessness and uncertainty along

with direct and indirect effects on both mental and physical QOL. Illness-related factors did not

have a significant impact on the mediating factors (only caregiver symptoms and patient

symptoms significantly predicted negative appraisal of caregiving). Of the effects of the illness-

related factors on caregiver QOL, only caregiver symptoms had a significant predictive effect

with both a direct and indirect effect on mental QOL and a direct effect on physical QOL.

Carey, Oberst, McCubbin and Hughes (1991) conducted research that combined the

models of Lazarus and Folkman and that of SOD. This study looked at caregivers of patients

receiving chemotherapy to explore what variables were predictive of caregiver mood.

Unlike the Northouse model discussed above which only had exogenous antecedent

factors, two sets of antecedent factors (exogenous and endogenous) were included in this model.

The exogenous factors in this model included patient/illness characteristics (seriousness of the

disease, length of the illness, dependency of the patient and symptom control), caregiver

characteristics (age, education, gender and health) and resources (socioeconomic and family

hardiness). The endogenous antecedent factor included in the study was caregiving burden,

which included measures of demand and difficulty of the caregiving role.

The mediating factor was again appraisal, this time measured on Hyve levels including

harm/loss, threat, challenge, benefit and benign. For analysis purposes harm/loss and threat were

grouped together as negative appraisal because of high multicollinearity. The outcome factor

was caregiver mood with only total mood disturbance included in the Einal study analysis.









Included in the study were 49 family caregivers caring for cancer patients currently

receiving outpatient chemotherapy. Results of the analysis show that 47% of variance of

caregiver burden was related to patient dependency. None of the other exogenous antecedent

variables predicted caregiving burden.

Negative appraisal was directly influenced by the health of the caregiver (those with worse

health had a more negative appraisal of caregiving), family hardiness (higher levels of family

hardiness likely leads to fewer reports of negative appraisal of caregiving) and caregiving burden

(those who perceived caregiving to be a burden were also likely to appraise caregiving as being a

negative stressor). Patient dependency did not have a direct influence on negative appraisal of

caregiving but because of its direct effect on caregiver burden it did have an indirect effect,

accounting for 50% of the variance in negative appraisal.

Finally, stepwise regression analysis showed that 49% of the variance in mood dysfunction

was accounted for by negative appraisal and age of the caregiver. Younger caregivers were more

likely to experience higher levels of mood disturbance as compared to older caregivers.

Additionally, those who had a negative perception of their caregiving role also were more likely

to have greater levels of mood disturbance. The fact that negative appraisal was one of only two

variables with a direct effect on caregiver mood helped to support the model that identifies

appraisal as a mediating factor between the outcome variable and the two sets of antecedent

variables.

Northouse and colleagues conducted two studies (2000 & 2001) focused on caregivers that

used a model from the combined works of Lazarus and Folkman and Scott, Oberst and Dropkin.

The first study looked at how well both patients and caregivers adjusted to a diagnosis of colon

cancer. A total of 112 subjects participated in the study with 56 patients and 56 spouses.









Surveys were filled out during three different time frames (one week following diagnosis, 60

days post surgery and one year post surgery). In this study the model predicted that adjustment

to the disease would be influenced by person, social and illness-related factors and that the

effects of these three factors would be mediated by an individual's appraisal of the situation.

Person factors included variables measuring demographics, role of the participant (either

patient or caregiver) and concurrent stress (the degree of stress in a variety of areas). Social

factors included measures of family functioning, social support and marital satisfaction. The

final antecedent factor was illness-related factors, which identified whether or not the patient had

received a colostomy or not. The assessment of appraisal involved two separate variables:

uncertainty about the nature and course of the illness and hopelessness about the future. The

outcome factor in this study was psychological adjustment and consisted of measures of level of

emotional distress and number of role adjustment problems.

Results of surveys completed one year after surgery supported the predicted model.

Caregiver uncertainty had a direct effect on the caregiver' s role adjustment problems at one year

post-surgery. Uncertainty also acted as predicted, mediating the effects of caregiver age,

caregiver concurrent levels of stress and the presence of a colostomy. Certain predicted

antecedent variables were found to have direct effects on role adjustment rather then predicted

indirect effects. Specifically caregiver marital satisfaction and presence of a colostomy both had

direct effects (as previously noted colostomy also had a significant indirect effect) on caregiver

role adjustment when it was expected that their effects would only be indirect.

Caregiver' s age and concurrent stress both had direct effects on caregiver hopelessness but

these effects did not carry on to role adjustment, as the direct effect of hopelessness was not

found to be significant. The final predictive variable was caregiver role problems assessed at









time one. These had a direct effect on role adjustment at time two. Overall the model accounted

for 64% of the caregiver' s role adjustment.

The second study by Northouse and colleagues (2001) again looked at couples. The

specific focus was couples' adjustment to breast cancer during the first year following diagnosis.

Subj ects in the study were 13 1 couples with 58 having a breast cancer diagnosis and 73 having a

benign diagnosis. Data were collected from participants at 1 week, 60 days and 1 year after

diagnosis. The focus of this review will be on both the husband' s adjustment to the diagnosis

and emotional distress at one year post-diagnosis.

The model used in the 2001 study was similar to the 2000 study previously discussed

regarding three maj or components making up the model: antecedents, mediators and outcomes.

Antecedent factors again included person, social and illness-related factors. The mediating

factor was appraisal of the stressor and the outcome was adjustment to the diagnosis.

Person factors measured were demographics of the subj ects and concurrent stress (impact

of other stressors the subj ect is currently facing while also facing the cancer diagnosis). The

variable included within the social factor was marital satisfaction. The illness-related factor was

defined as severity of the illness. Severity was classified as benign, malignant with no lymph

node involvement and malignant with lymph node involvement.

Appraisal of the diagnosis was measured by two variables, hopelessness and uncertainty.

The final outcome of adjustment was also measured using two variables. The variables were

measures of emotional distress and role problems. Because this model was longitudinal

Northouse and colleagues also included in their model the measure of adjustment at baseline

(one week post-diagnosis) as a predictor of adjustment at one year post-diagnosis.









Following other stress models, Northouse and colleagues predicted that the three

antecedent factors would have an indirect effect on adjustment. The effect of these factors would

be mediated through the appraisal factor, which would have a direct influence on adjustment to

the diagnosis. The model in this study contained two changes that were not included in the

Northouse model discussed above. The first change saw one of the antecedent factors (illness-

related) hypothesized to have not only an indirect effect on the outcome but also a direct effect

on adjustment to the diagnosis. Because of the longitudinal nature of the study they also

predicted that baseline adjustment (measure one week post-diagnosis) would have a direct effect

on how adjustment to the diagnosis was perceived at the final survey time. The model also

suggested an interaction between the patients' perception of adjustment and the perception of the

husband.

In their analysis, Northouse and colleagues ran two separate models, one for each of the

outcome variables measured. The first model looked at how role adjustment problems were

predicted by the model. Overall, the significant variables accounted for 59% of the variance in

the husbands' role adjustment problems one year after diagnosis. As predicted, uncertainty,

baseline role problems, illness severity and the patients' role problems all had direct effects on

the husbands' role adjustment problems at one year post-diagnosis. Additional variables that had

not been predicted to have direct effects were identified from the analysis and included

concurrent stress and marital satisfaction. These variables were only predicted to have indirect

effects through either uncertainty and/or hopelessness. Two factors did have indirect effects;

education and marital satisfaction and both had their effects mediated through uncertainty. Both

concurrent stress and marital satisfaction were significantly related to hopelessness, but










hopelessness failed to significantly predict role adjustment problems and therefore did not act as

a mediating factor as predicted.

The second model that Northouse and colleagues ran considered the husbands' emotional

distress one year after diagnosis as the outcome variable. As predicted, direct effects on

emotional distress were found for husbands' baseline emotional distress, hopelessness and the

patients' emotional stress one year after diagnosis. An indirect effect was found for husbands'

baseline emotional distress with hopelessness acting as the mediating variable. Husbands'

education level and concurrent stress were significantly related to uncertainty but as with

hopelessness, uncertainty failed to significantly predict role adjustment problems and therefore

did not act as a mediating factor.

All the studies reviewed that used models based on the concept of cognitive appraisal

suggested that there was always some mediation between the measured antecedent variables and

the appraisal component of the model leading to the emotional outcome of the participants.

While no models showed full mediation of the antecedents through the appraisal component,

they all suggested that a large portion of the variance in the emotional outcomes were attributed

to the appraisal component. The next section of this chapter will explore the model proposed for

this study and will identify how the variables chosen to measure fit into the concept of a

cognitive appraisal of stress model.

Cognitive Appraisal of Stress in Caregivers of Pediatric Oncology Patients

The model used in this study contains elements of the models put forth by Lazarus and

Folkman (1984), Scott, Oberst and Dropkin (1980) and Carey, Oberst, McCubbin and Hughes

(1991). The complete model is presented in figure 2-1.

In any cognitive appraisal model of stress there is an initial event or situation that initiates

the stress appraisal process. The focus stimulus for this proj ect was the diagnosis of cancer in










pediatric patients. Family caregivers of these children were the population of interest that were

surveyed to see what factors influence their appraisal of their caregiving role and how their

quality of life is affected by their role as a caregiver.

Like the modified SOD model introduced by Carey and colleagues (1991), this model has

two sets of antecedent variables. The first variable set is exogenous variables while the second

set is endogenous in nature. The exogenous set of antecedent variables (Fig 2-2) fell into the two

main categories: environmental and personal. Environmental variables in this study were those

that were tied specifically to the disease itself. Measures included the time since the patient was

last diagnosed and the number of medications the patient was currently taking. The personal

variables were classified as either caregiver variables or patient specific variables. Measures

related to the patient were gender and age. Caregiver variables included gender, age, marital

status, employment status, ethnicity, education level, relationship to the patient, SES, presence of

social support, employment status and source of medical expense coverage.

The next step in the model involved the endogenous variables that were first included in

the work of Oberst and colleagues (1991). The current model considers caregiver burden

including medication hassles along with more general caregiving demands (Fig 2-3). Demands

will focus on both the intensity and time devoted to caregiving while the medication hassles

measurement will look at the intensity of the hassles associated with management of a patient' s

medication regimen.

Appraisal of stress was included in this model in the role of a mediating factor between the

already discussed exogenous and endogenous antecedent variables and the outcome of interest,

caregiver quality of life (fig 2-4). In this study, appraisal as stressful was the focus of analysis.










In particular, level of appraisal of stress as a threat was examined using an established instrument

assessing caregiver stress.

The final outcome variable in the model is quality of life. Quality of life is a

multidimensional measure that encompasses a number of concepts including physical

functioning, emotional functioning, family functioning and social functioning. The complete

model is included in Figure 2-1 below.

Research Questions

The obj ectives of this study were to (1) validate a quality of life instrument for use in a

population of caregivers of children with cancer and (2) to test a cognitive appraisal model of

stress in the same population to identify factors that influence caregiver quality of life with

specific focus on demands and hassles and the appraisal of stress related to caregiving. The

following research questions were established for the purpose of meeting the above obj ectives.

Question 1 focuses on Objective 1, while questions 2 through 7 are focused on Objective 2.

1. Is the Caregiver Quality of Life Index Cancer Scale a reliable and valid instrument to
use to measure quality of life in a population of caregivers of children with cancer?

2. Will the exogenous antecedent variables in the model being tested (patient characteristics,
caregiver characteristics and illness characteristics) predict the demands placed on the
caregiver?

3. Will the exogenous antecedent variables in the model being tested predict the caregiver' s
assessment of hassles related to medication administration?

4. Will the exogenous antecedent variables and endogenous antecedent variables (demands
and medication administration hassles) predict the caregiver' s stress appraisal?

5. Will the exogenous antecedent variables and endogenous antecedent variables (demands
and medication administration hassles) predict the caregiver' s quality of life?

6. Will the exogenous antecedent variables and endogenous antecedent variables and
caregiver' s stress appraisal predict the caregiver' s quality of life?










7. Will the final model be a fully mediated model with only stress appraisal having a direct
effect on CQOL or will it be a partially mediated model with some other variables aside
from stress appraisal having a direct effect?


Figure 2-1. Cognitive appraisal model of stress for caregivers of pediatric oncology patients



Exog~enous
Variables


Patient
Characteri sti cs


Cancer Diagnosis


Figure 2-2. Exogenous antecedent variables in the model


Caregiver
Characteri sti cs


Caregiver
Characteri sti cs









Exogenous
Variables


Endogenous
Antecedent
Variables


Figure 2-3. Endogenous antecedent variables added to the model.


Exogenous
Variables


Endogenous
Antecedent
Variables


Mediator
Variable


Caregiver Burden
Demands
o Intensity
0 Time
Hassles
o Intensity


Figure 2-4. Mediator variable (caregiver appraisal) added to the model









CHAPTER 3
LITERATURE REVIEW

The focus of this chapter is to provide insight into what type of research has been done to

date with regards to caregiver quality of life. To keep in line with the current research proj ect

the studies reviewed are all studies that include cancer as the primary or one of the primary

disease states. Areas that will be addressed will be the type of instruments that have been used to

study caregiver quality of life (QOL), the type of caregiver populations that have been studied,

the theoretical frameworks that have guided these studies, the findings of the studies with regard

to caregiver QOL and the limitations of past research. Finally the chapter will conclude with a

discussion of how the current proj ect builds on the studies that have already been conducted.

Cancer Caregiver Quality of Life Research

The author performed a literature search of the PubMed, CINAHL and ISI Web of Science

electronic databases using key words: caregiver, caregiving, quality of life, cancer, child,

pediatrics) and parent. Inclusion criteria for articles were that they had to be in English, a

primary measure of the study had to be caregiver quality of life, the caregivers were to be unpaid

family caregivers and not paid professionals, data analysis had to look at identifying factors

related to QOL. Patients being cared for by the caregivers had to have a diagnosis of cancer.

Along with the database search, reference lists for identified articles were culled as well for

additional studies not identified in the database searches.

The literature search netted a total of 26 usable articles that met the inclusion criteria.

Sixteen of the articles were based in North America, while the other ten articles came from

countries outside North America. Articles were published as recently as 2007 and dated back to

1994. The fact that all the studies were conducted within the past 13 years coincides with that

fact that caregiver quality of life research is a fairly young field of research that is primed for









great expansion over the next few years. It is also a topic that crosses over numerous health care

fields as studies were conducted in disciplines including nursing, psychology, and medicine.

Table 3-1 contains a summary of the articles included in this review along with some of the facts

regarding each of the studies.

Quality of Life

When it comes to the study of quality of life, a review of literature focused on either

patients or caregivers will show that in most respects there is little agreement as to an explicit

definition of quality of life (Le et al., 2003). What is consistent is an understanding that quality

of life itself is a multidimensional concept that can include a range of domains. Domains often

included are physical, social and psychological domains. Other domains that have been included

but are not seen as often in studies include financial, spiritual, anxiety, burden, family

functioning and depression (Edwards & Ung, 2002).

The lack of a consistent and agreed upon definition of quality of life is clear in the 26

articles that were reviewed here. In all, only four out of the 26 articles clearly defined quality of

life outright while others simply hinted at the concept of what it was they were measuring. The

four studies found to define quality of life all used a different definition to identify what

ultimately is assumed to be the same concept. Wagner and colleagues (2006) saw QOL as "a

multi-dimensional construct measuring overall enj oyment of life", while Yamazaki and

colleagues (2005) viewed QOL as "perceived health status and daily functioning associated with

changes in health status, including physical and mental health and role and social functioning."

Witt Sherman and colleagues (2006) combined several concepts to come up with their perception

of QOL that is "the impact of sickness and health care on a person's daily activities and sense of

well-being, and is related to an individual's ability to cope, which is highly individualized." The

fourth article found to clearly define QOL relied on what would be viewed as the most accepted









definition as it is the definition designated by the World Health Organization Quality of Life

Group (WHOQOL). Chien and colleagues (2003) conceptualized QOL as "individuals'

perceptions of their position in life within the context of the culture and value systems in which

they live and in relation to their goals, expectations, standards and concerns."

Measuring Quality of Life

Tied into the fact that there is little agreement as to how researchers define quality of life,

there is also little agreement as to how QOL should be measured. Of the 26 articles reviewed

there were at least 15 different instruments used to measure caregiver QOL with some studies

using more then one instrument to measure QOL. The instruments identified were classified into

one of three measurement categories: global, generic and disease specific.

Global instruments

Global instruments are single item instruments (generally a visual analogue scale) that

measure QOL across any population. They leave it up to the individual to conceptualize what

they consider QOL to be. Because of this individual assignment of QOL these instruments are

difficult to use to compare QOL scores across different populations. Global instruments were

the sole means of QOL measurement in four of the 26 studies reviewed. Hagedoorn and team

(2000) had caregivers rate their QOL on a scale of 0 to 10 with higher scores indicative of the

best imaginable life. The other three global instruments were all 100mm visual analog based

instruments (Nijboer, Triemstra, Tempelaar, Sanderman, & van den Bos, 1999; Iconomou, Viha,

Kalofonos, & Kardamakis, 2001; Clark et al., 2006).

Generic instruments

Generic instruments are multiple item instruments or multiple instruments that measure

multiple concepts of quality of life. Just over half (15) of the studies reviewed here used some

type of generic instrument to measure quality of life. The most prevalent generic instrument









used in these studies was the Medical Outcomes Study Short From 36 (MOS SF-36). This

instrument has been validated in numerous populations and countries so it allows for some

comparison of scores across studies.

The MOS SF-36 consists of 36 items that fall into eight multi-item scales (physical

functioning, role-physical, bodily pain, general health, vitality, social functioning, role-emotional

and mental health). The eight subscales are clustered into two summary measures of physical

health and mental health. Studies reviewed here based their results on the two summary scores

only (Kershaw, Northouse, Kritpracha, Schafenacker, & Mood, 2004; Northouse et al., 2002;

Weitzner, Jacobsen, Wagner, Friedland, & Cox, 1999; Kim, Baker, & Spillers, 2007) or on the

scale score and summary scores (Wagner et al., 2006; Yamazaki et al., 2005; Boyle et al., 2000;

Tuinman, Fleer, Hoekstra, Sleijfer, & Hoekstra-Weebers, 2004). Other generic instruments used

in the studies reviewed included the Quality of Life Index (Gaston-Johansson, Lachica, Fall-

Dickson, & Kennedy, 2004), the Profile of Mood States-Short Form and Caregiver Strain Index

(Campbell et al., 2004; Kim et al., 2007), Assessment of Quality of Life at the End of Life

(Axelsson & Sjoden, 1998), World Health Organization Questionnaire on Quality of Life:

BREF-Taiwan Version (Chien et al., 2003 and Chang, Tsai, Chang, & Tsao, 2007), the Quality

of Life-Family (Borneman et al., 2003), the Mental Health Inventory-1 7 (Kornblith et al., 2001),

the Quality of Life Scale (Family Version) (Witt Sherman et al., 2006) and the Functional

Assessment of Chronic Illness Therapy-Spirituality (Kim et al., 2007). That is seven additional

studies using eight different generic instruments to measure what is conceptually the same

outcome.

Disease-Specific instruments

Disease-specific quality of life instruments are similar to generic instruments in that they

are multi-item instruments that measure multiple concepts. They can either provide overall










quality of life scores or a combination of subscale scores and overall scores. Unlike generic

instruments that are viable across multiple populations, disease-specific instruments, as their

name implies, are designed to measure quality of life within a specific disease state. The items

of measurement have been developed with specific activities and outcomes associated

specifically with a given disease state. The instruments can be focused even more specifically on

populations within disease states, like patients or caregivers. Nine of the studies reviewed used

some type of cancer-specific instrument to measure quality of life. Five of the nine studies used

the Caregiver Quality of Life Index Cancer (CQOLC) or a language-adapted version of the

instrument. The CQOLC is the same instrument used in this study so it is discussed in more

detail in the Methods chapter.

The other four instruments included the Functional Assessment of Cancer Therapy

(Northouse et al., 2002), the Cancer Caregiver Quality of Life Index Chinese Version (Chen et

al., 2004), the Functional Assessment of Cancer Therapy-BMT (Boyle et al., 2000) and the

EORTC Prostate Cancer Quality of Life Questionnaire (Kornblith et al., 1994).

Additional Study Characteristics

Twenty four of the studies reviewed included caregivers of adult cancer patients while only

two were found that looked at the caregivers of children with cancer. Convenience samples were

used in 20 of the studies while six studies used longitudinal study techniques to track quality of

life over an extended period. Twenty one studies identified what the types of cancer the patients

had while Hyve did not. Of the 21 studies, the maj ority focused on breast or prostate cancer while

the others focused on other specific cancer types or included patients covering a wide range of

cancer types. Sample sizes ranged from 20 to 270 across the studies and nine studies compared

the caregiver results to the patients, healthy matched subjects or other caregivers. Looking at

whether or not the study was guided by a theoretical foundation, ten studies identified some

40









theoretical model as their basis while the remaining 16 did not. Caregivers in the studies

included spouses/partners only in seven studies and a combination of individuals in the other 19

studies including children, parents, siblings, family friends, in-laws or other relative.

Factors Associated with Caregiver Quality of Life

Current research in caregiver quality of life has identified a number of factors that are

associated with or predictive of caregiver quality of life. In an effort to organize the findings of

the studies identified for this review and to keep in line with the theoretical framework used in

this current study, factors that were found to be significantly associated with caregiver quality of

life in the reviewed studies were organized into one of three categories: patient factors, disease-

related factors and caregiver factors.

Patient characteristics

Patient factors were those related specifically to the patient. Factors ranged from general

demographic information like age and gender to factors such as performance status and activities

of daily living.

The impact that cancer had on a patient was measured in a number of studies. Impact was

measured by the patient' s ability to perform overall activities of daily living (Wagner et al.,

2006), to perform specific daily activities (Axelsson & Sjoden, 1998) and as a measure of the

patient' s overall physical status and ambulatory ability (Weitzner & McMillan, 1999; Weitzner

et al. 1999a; Weitzner et al., 1999b). Of the items related to the patient's ability to lead a

"normal" life, all but one study identified a negative relationship between these patient measures

and caregiver QOL, which suggests that as the patient physically deteriorates and becomes more

reliant on others to function physically the caregiver' s quality of life declines. While two of

Weitzner' s studies (Weitzner et al. 1999a and Weitzner et al., 1999b) showed a negative









relationship between physical status of the patient and caregiver QOL, Weitzner & McMillan

(1999) identified a slightly positive relationship.

Patient gender was identified in only one study as having a significant relationship to QOL.

In this case Chien and colleagues (2003) identified that caregivers of females reported a

significantly lower measure of social relationships (one of four QOL domains measured) than

caregivers of male patients. Patient depression was another factor identified as negatively

influencing caregiver QOL (Nijboer et al., 1999). Finally personal factors related to patients

were identified by Kornblith and colleagues (1994) as having an influence on caregiver QOL.

Four factors identified as having a negative impact on caregiver QOL were patient pain level,

frequent urination by the patient, decreased sexual interest and patient lack of energy. As these

factors all increased for the patient (that is they got worse) the caregivers saw a negative impact

in certain factors related to their QOL. Clark and colleagues (2006) looked at what effect an

intervention to improve the patient' s overall quality of life would have on the caregiver' s quality

of life. In the end they saw no effect when comparing longitudinal results for caregivers of

patients who had received the intervention and caregivers of patients who received standard care.

Disease related factors

A handful of the studies reviewed identified disease specific factors as potential predictors

of caregiver QOL. Disease related factors were those tied specifically to the disease and

included factors ranging from disease type to time since diagnosis and stage of the disease.

Reviewing the results of the studies showed that when disease specific factors were measured

they often had no effect on caregiver QOL (Wagner et al., 2006; Kershaw et al., 2004; Iconomu

et al., 2001; Northouse et al., 2002).

One study (Chien et al., 2003) identified two disease-specific factors as having an

influence on caregiver QOL. The time since diagnosis had a negative impact (as time since

42










diagnosis increased caregiver QOL decreased). Treatment stage of the child also had an impact

with parents of deceased children reporting the lowest QOL scores, while parents of children

who were just under surveillance reporting the highest QOL. Caregivers of children who had

relapsed reported scores that fell between the other two stages discussed.

Disease site was also found to have an influence on reported caregiver QOL scores

(Weitzner et al., 1999b). The site of cancer diagnosis (lung, breast or prostate in this study)

suggested that caregivers of patients with certain types of cancer were impacted more than

caregivers of patients with other types of cancer. Caregivers of patients with lung cancer

reported lower QOL scores than caregivers of patients with prostate cancer and caregivers of

breast cancer patients had higher assessments of their QOL compared to caregivers of patients

with prostate cancer.

Caregiver characteristics

The final breakdown of categories from the reviewed studies included factors that were

associated with the caregivers themselves. Caregiver characteristics included factors that ranged

from basic demographics to factors related to their caregiving roles such as level of self-efficacy

and symptom management. The coping skills of the caregiver (both emotion-focused and

problem-focused) were shown to have a negative relationship with caregiver quality of life while

the presence of social support was found to have a positive impact on caregiver QOL (Wagner et

al., 2006). Social support was found to be positively related to caregiver QOL in other studies as

well (Northouse et al., 2002; Yamazaki et al., 2005; and Chang et al., 2007). Kim and colleagues

(2007) found that caregiver' s self-esteem had positive effects on three of four quality of life

dimensions that they measured (it had no effect on the fourth dimension). Other factors that

were found to be positively related to caregiver quality of life included caregiver age, caregiver

efficacy, family hardiness, higher education level, higher self-reported health status, relationship









with the patient, employment status, caregiver income level, quality of the relationship with the

patient, self-esteem, marital status and county of residence population (Kershaw et al., 2004;

Northouse et al., 2002; Chien et al., 2003; Weitzner et al., 1999b; Nijboer et al., 1999; Meyers &

Gray, 2001; Witt Sherman et al., 2006).

Along with coping skills having a negative impact on caregiver QOL, others factors were

also identified as having a similar effect. Demographic factors that lowered caregiver QOL

included age and education level (Kershaw et al., 2004; Campbell et al., 2004) along with

relationship to the patient, with spouses and partners reporting lower QOL compared to other

caregivers (Witt Sherman et al., 2006). Looking beyond simple demographics, caregiver quality

of life was negatively influenced by fatigue, depression, anxiety, burden of care, coping strategy,

impact of caregiving on life, negative appraisal of caregiving, feelings of hopelessness, health

status and caregiving stress (Gaston-Johansson et al., 2004; Kershaw et al., 2004; Iconomou et

al., 2001; Northouse et al., 2002; Chien et al., 2003; Nijboer et al., 1999; Kim et al., 2007).

Chang and colleagues (2007) looked at what effects sleep quality had on the caregiver QOL and

identified a number of factors that had negative effects on QOL assessment including, daytime

dysfunction, sleep disturbance and subjective sleep quality

Individual components of QOL itself also had effects on other QOL domains and overall

quality of life. Nijboer and colleagues (1999) found that caregivers with high levels of quality of

life at baseline reported higher QOL at 6 months. Higher mental health was found in multiple

articles to be positively related to caregiver QOL (Weitzner et al., 1999a; Rhee at el., 2005).

Limitations in the Current Research

One of the most significant limitations discussed earlier is the lack of a consensus on what

makes up quality of life. A total of 26 articles were reviewed and only four had a clear definition

of quality of life. This lack of a consensus leads to two other issues. The first is the wide-
44










ranging types of instruments used to measure quality of life. Instruments were found to be

global, generic or disease specific. The second other issue that is spawned from the lack of a

consensus for defining QOL is that the use of so many different types of instruments leads to the

inability to be able to compare results across different studies and therefore different populations.

Another fault found in many of these studies and in most psychological studies, for that

matter, is that the participants are drawn from convenience samples and there is little

longitudinal work done to look at the true impact of caregiving. Cancer is a chronic disease that

generally requires long term care by the caregiver. Studies that are only taking a snapshot of the

caregivers live face the possibility of not capturing a true picture of what impact the disease is

actually having on the caregiver.

While the researchers of these reviewed studies looked at a number of factors that

influence caregiver quality of life, none of the studies here looked at the impact that the

administration of the patient' s medication had on the caregiver' s QOL. Proper pain control

depends on proper medication dosing which often becomes the responsibility of the caregiver.

A final limitation of the studies reviewed centers on the minimal focus on caregivers of

children with cancer. Two of the 26 articles had a pediatric focus, while the others were all

focused on caregivers of adult patients (at least 18 years of age). While the number of pediatric

incidences of cancer is below that of adult cases, the fact remains that family caregivers of

pediatric patients face many of the same difficulties as family caregivers of adult patients.

However, caregivers of pediatric patients also face many different obstacles, that are not

experienced by caregivers of adult patients and it is imperative that health care professionals

understand these challenges.









Caregiver Quality of Life in a Pediatric Oncology Setting

The current research proj ect set out to address many of the limitations identified from the

current literature on the quality of life of caregivers of patients with cancer. The focus

population was caregivers of children with cancer, which to this point has been mostly ignored in

current quality of life research. This study was driven by a cognitive appraisal of stress model,

which was outlined in detail in chapter 2. This model helped to establish both the factors that

were measured and the statistical techniques that were used to analyze the data collected. While

some of the factors that were tested in this proj ect have been incorporated into previous studies,

newer variables were also added including a measure of the impact of medication administration.

While this proj ect was not able to address all of the limitations that have been found in the

current caregiver quality of life issue, it did address many of them. An effort was made to

further identify how family caregivers are impacted by their roles and to remind health care

professionals of the impact that a disease like cancer has on not only the patient but also their

loved ones who play a maj or, but often ignored role in the health care process.












Table 3-1. Studies of quality of life of caregivers of cancer patient:




Sample (Spouse, Patients
Type of QOL parent, family, (adults or Definintion of
Title Authors IYear Design QOL Instrument Instrument other) C~hildren)l QOL (e/o
Quality of Life of
Husbands of Women IChristina D I Cross- IMedical Outcomes Short-
with Breast Cancer IWagner, et al. 12006 Isectional IForm (SF-36) Igeneric Ihusbands IAdult IYes


Psychological
distress, fatigue,
burden of care and
QOL in primary I No conceptualizedd
caregivers of patients I as 4 domains -
with breast cancer I Majority were I health &
undergoing IFannie I Cross- I husbands (90%), 1 functioning,
autologous bone IGaston- I Sectional I others not I socioeconomic,
marrow IJohansson, et I Convenience I specifically I psychologicallspriti
transplantation lal. 12004 ISample IQuality of Life Index IGeneric identified IAdult lual, family




Coping strategies and
QOL in women with Cos
advanced breast ITrace I sectional I Husbands, sisters,
cancer and their IKershaw, et I convenience IMedical Outcomes Short- I daughters, sons and
family caregivers lal. 12004 Isamples IForm 36 (SF-36) IGeneric Irelatives/friends IAdult n



Prostate cancer in
African Americans: Crs- Profile of Mood States-
Relationship of patientLs C Scinl hotForm (POMS-SF) Partners of prostate
and partner self- Capbell, et Covnience and Caregiver Strain Gnrcand cncer patients
efficacy to QOL al04 smpl Index Geei adults) Adut n


Couples dealing with
cancer: role and
gender differencesCrs
regarding Mrietsetoa
psychological distress Haeorn, et Covnience Quality of life ladder prtners of cancer
and QOL al00 Smpl scale Glbl ptients. Adut NO


Quality of life of Bri
cancer patients and Aelsson and moified Assessment of
their spouses in Per-Olow qaiyof life at the end prtners of cancer
palaiehome care Sldn 1998 Lnitudinal of life (AQEL) Gnrcatients Adut No


Impact of Cancer on Cos
primary caregivers of Grgrsscinal
patients receiving Iconomou, et cnvenience 100~mm visual analogue spue(54.5%
radiation therapy al 01 sml scle Goafemale) Adut No













Table 3-1. Cont nued





Sample (Spouse, Patients
Type of QOL parent, family, (adults or Definintion of
Title Authors Year Design QOL Instrument Instrument other) C~hildren)l QOL (e/o




Tecaregiver quality I family caregivers of
oflife index-cancer I adult cancer patients
(CQOLC) Scale: IMichael A I Cross- I in a hospice setting
validation in a IWeitzner, I sectional ICaregiver Quality of life I (spouse, mother,
hoehospice ISusan C I convenience Ilndex-cancer Scale Disease Idaughter, son,
setingMcillan 1999 Isample I(CQOLC) ISpecific Isibling and other) IAdult INo


Tecaregiver quality
oflife index- cancer
(CQOLC) scale:
deelopment and
vaiainofan
isrmnt to
mesure quality of life Cos
ofthe family caregiver Michael A I Sectional, I Spouse, mother,
patients with IWeitzner, et I convenience Disease Idaughter, son sister
cacr lal. 1999 Isample ICQOLC Ispecific land other IAdult n



Korean Version of theCrs
Caregiver Quality of I Sectional,
lieindex- IYoung Sun I Convenience Icaregiver Quality of Life Disease ISpouse, child, parent
cacrCQOLC-K) IRhee, et al. 2005 ISample Ilndex Cancer (QOLC-K) ISpecific land other IAdult n





Quality of life of I cross- I FACT-G =
wmn with recurrent ILaurel L I sectional, IFunctional Assessment Idisease IHusband, children,
best cancer and Northouse, et I convenience lof Cancer Therapy Ispecific, SF-36 Isister or other friend
ter family members lal. 2002 Isample I(FACT-G) and the SF-36 I= generic Irelative adult n


Health-related Quality Cos
ofLife of Mothers of IShin I Sectional,
Chlrnwith IYamazaki, et I Convenience I Mothers of leukemia
Leukemia in Japan lal. 2005 ISample IShort-Form 36 (SF-36) IGeneric patients IChildren IYes





Cobntion IWorld Health
Quality of Life Among I of randomly IOrganization I Caregivers (mothers,
Primary Caregivers I selected IQuestionnaire on Quality I fathers and
ofTaiwanese I strata and a lof Life: BREF-Taiwan I grandmother) of
Chlrnwith Brain ILi-Yin Chien, I convenience IVersion (WHOQOL- I children with brain
Tumor let al. 2003 Isample IBREF-TAlWAN) IGeneric Itumor IChildrenye












Table 3-1. Cont nued





Sample (Spouse, Patients
Type of QOL parent, family, (adults or Definintion of
Title Authors Year Design QOL Instrument Instrument other) C~hildren)l QOL (e/o
Family Caregiver
Quality of Life: IMichael A
Differences Between IWeitzner, I Cross- ICaregiver Quality of Life
Craieand ISusan C I sectional, Ilndex-Cancer and SF-36 Disease
Palliative Cancer IMcMillan, Paull Iconvenience overall physical health ISpecific and
Treatment Settings IB Jacobsen 1999 Isample Iscores Igeneric ISpouse, child, other lAdults n

Determinants of
Caregiving
Experiences and
Metal Health of I one-item linear visual
Partners of Cancer IChris Nijboer, Longitudinal analogue self- I Partner of patient
Patients let al 1999 IStudy assessment scale IGlobal I(spouse, lover, etc) lAdults n


Impact ofCancer Cos
ptets quality of life I sectional,
onthat of spouse IMei-Ling I convenience Icaregiver Quality of Life Idisease IPartners, children,
crivrs. IChen, et al. 2004 Isample Index (chinese Version) ISpecific other IAdult INo




Cocrsof family
crgvrs of patients
wihcancer facing
palaiesurgery for ITami
advanced IBorneman, et I Quality of Life- Family I Spouse, child, parent Adults (18
mlignancies lal. 2003 Longitudinal I(QOL-F) IGeneric land other land ole)n



Caegiver Quality of I Cross- ISF-36 and Functional
Life after autolongous I Sectional, lAssessment of Cancer IGeneric and I Adults
boemarrow IDeborah I Convenience ITreatment-BMT (FACT- Idisease ISpouse, parents, I(older then
taslntation IBoyle, et al. 2000 ISample IBMT) Ispecific Ifriends and other 119) No

TeRelationships
btenfamily
pnaycaregiver
chracteristics and Cos
saifcinwith IJudy L Scinl
hsiecare, quality IMeyers, Louis I Convenience Icaregiver Quality of Life Disease ISpouse, child, in-law,
oflife an burden IN Gray 2001 ISample Ilndex-Cancer (CQOL-C) ISpecific other lAdults INo


Quality of life of Cos
painswith prostate IAlice B I Sectional, IEORTC Prostate cancer
cacr and their IKornblith, et I Convenience IQuality of Life Disease I Adults over
spuses lal. 1994 ISample IQuestionnaire ISpecific Ispouses/partners 150 INo














Table 3-1. Cont nued





Sape(Spouse, IPatients
Type of QOL Iparent, family, I(adults or IDefinition of QOL
Title AuthorsYear IDesign IQOL Instrument Ilnstrument other) IChildren)(eno







Quality of life and
stesresponse I spouses during
syptoms in long- I Cross- I diagnosis and
temand recent IMarrit A I Sectional, I treatment and
spuses of testicular ITuinman, et I Convenience IRAND-36 (Dutch version I spouses after lAdults over
cacrsurvivors lal. 2004 ISample lof the SF-36) IGeneric Itreatment 120 INo


Teimpact of

esrmstine and low
doehydrocortisone
onthe quality of life of
mnwith hormone
rfractory prostate
cacr and their
prnr:a feasibility IAB Kornblith, I Mental Health Inventory- I Spouse, siblings,
stdyetal. 2001 ILongitudinal 117 goeneric Ichildren and friend lAdults INo

Quality of life of
painswith
advanced cancer and
acquired immune
deiinysyndrome IDebroah Witt I Spouse, siblings,
adtheir family ISherman, et I Quality of Life Scale I children, relative,
crgvrs lal. 2006 Longitudinal I(Family Version) Igeneric Ipartner and other lAdults Yves



Quality of life of
crgvrs of patients I Spouse, siblings,
wihadvanced-stage IMatthew Longitudinal Analog Self- I children, parent, and
cacr IClark, et al. 2006 ILongitudinal lAssessment Item IGlobal Isignificant other lAdults INo


Wrld Health
Ognization
Quality of sleep and I Cross- IQuestionnaire on Quality
qulity of life in IEdward Wei- I Sectional, lof Life: BREF-Taiwan
crgvrs ofbreast IChung Chang,l Convenience IVersion (WHOQOL-
cacr patient let al. 2007 ISample IBREF-TAlWAN) IGeneric ISpouse, or children lAdults INo

Profile of Mood States-
SotForm (POMS-SF),
Cancer Caregivers' I Short-Form 36 (SF-36)
Quality of life: effects I Cross- land Functional
ofgender, I Sectional, lAssessment of Chronic
rlationship, and IYoungmee I Convenience Illlness Therapy- I Spouse, children
appaisl Kmet al 2007 ISample ISpirituality (FA-CIT-SP) IGeneric land other lAdults INo









CHAPTER 4
IVETHODOLOGY

Introduction

This chapter discusses the process that was used for establishing reliability and validity of

the Caregiver Quality of Life Index Cancer Scale (CQOLC) in a pediatric oncology setting,

describes the dependent and independent variables and their corresponding measurement

instruments and lists inclusion criteria for subj ects. The chapter then moves on to identifying the

data analysis strategies and concludes with the list of the study hypotheses.

Caregiver Quality of Life Index Cancer

The first goal of this study was to establish validity and reliability of using the CQOLC to

measure quality of life of family caregivers who are caring for children with cancer. There are

currently a number of generic instruments available to measure quality of life of family

caregivers but to date there is no disease specific instrument focused on family caregivers of

children with cancer. A review of literature by Edwards and Ung (2002) identified four

instruments that had been used to measure family caregiver quality of life specifically designed

for those in a cancer setting, one of which was the CQOLC. All four instruments had been used

to look at family caregivers of adult cancer patients (patients over the age of 18).

The CQOLC is a 35-item instrument that uses a 5-point Likert-type scale to assess the

quality of life of family caregivers of cancer patients. The instrument has a maximum score of

140 with higher scores representing a higher quality of life. Development of the instrument

occurred over three phases that included patient, family caregiver and expert interviews, pilot

testing and extensive psychometric testing to establish reliability and validity of the instrument

(Weitzner et al., 1999a). The instrument, like most quality of life instruments, is









multidimensional with items measuring physical, emotional, family and social functioning as

well as spirituality and financial issues (Boling, Macrina, & Clancy, 2003)

Psychometric testing was conducted using a sample of 263 family caregivers of adult

cancer patients diagnosed with lung, breast or prostate cancer currently receiving active/curative

care. Testing showed that the instrument had an internal consistency of oc =0.91 and test-retest

reliability correlation coefficient of 0.95. Convergent reliability testing results ranged from

r=0.49 to r=0.65 when correlation coefficients were examined between the CQOLC and the

mental composite score (MCS) of the SF-36 and the subscale scores that make-up the MCS.

Additional convergent reliability was established by looking at the correlations between the Beck

Depression Inventory (BDI) and the CQOLC and also the State Trait Anxiety Inventory (STAI).

These tests resulted in high correlations of -.50 and -.52 respectively. This indicated that lower

anxiety and depression scores were associated with more positive quality of life. Weitzner and

colleagues also looked at how well the CQOLC correlated to family caregiver burden using the

Caregiver Burden Scale (CBS). Results showed as expected a highly significant correlation of -

0.65. Discriminant validity was established by looking at the correlations between the CQOLC

and the physical composite score (PCS) of the SF-36, the subscale scores of the PCS, scores

from the Multidimensional Scale of Perceived Social Support (MSPSS) and finally scores from

the Marlowe-Crowne Social Desirability Scale (MCSDS). Results showed that low significant

correlations were found between the CQOLC and the subscales of the PCS, and the MSPSS

score (range = 0.20-0.37). Results were not significant when looking at the correlation between

CQOLC and the PCS score and the results of the MCSDS (Weitzner et al., 1999a).

Weitzner and McMillan (1999b) followed up the initial development and validation study

of the CQOLC with a study that validated the instrument within a population of family









caregivers of cancer patients in a home hospice setting. Convergent validity was established in a

similar fashion by looking at correlations between the CQOLC and MCS score and the subscale

scores of the MCS of the SF-36. As before correlations were high and significant (range = 0.48-

0.67). CQOLC scores were also compared to the total score and subscale scores of the Caregiver

Quality of Life Index (CQLI). Results showed low to moderate correlation results (range = 0.27-

0.48). Comparing scores between the CQOLC and the CQLI identified that while the two

instruments were related they do not necessarily measure the same elements allowing the

CQOLC to stand-alone as an independent measure of family caregiver quality of life.

Along with the two studies that Weitzner and colleagues (1999a,b) and Weitzner and

McMillan (1999) conducted, the CQOLC has been revalidated in another disease state Cystic

Fibrosis (Boling et al., 2003) and another language Korean (Rhee et al., 2005). Like the two

Weitzner studies, these two revalidation studies followed the same procedures for establishing

validity by looking at the strength and significance of correlations between scores on the

modified CQOLC and the composite and sub scale scores of the SF-36. Both studies also looked

at the relationship between the modified CQOLC and the BDI. Results were similar in both

studies with moderate to high correlations found between the modified CQOLC and the

mental/emotional measures (MCS and corresponding subscales and the BDI) and low

correlations to physical measures (PCS and corresponding sub scales).

In an effort to reduce any burden on the family caregivers that chose to participate in this

study, only subscales of each of the instruments were used in this study. To measure family

caregiver quality of life, we chose to focus on the burden and financial concerns subscales. The

burden subscale items were chosen because of their focus on the emotional impact of the

caregiving role on the family caregiver and the family unit of the caregiver. The financial









subscale items were selected to help us better understand the financial impact that the caregiving

role was having on the family caregiver and their family, given the amount of time that often is

devoted to the care of a child being treated for cancer, and the fact that it often limits the

employment of one or both parents. All items for each subscale were used to keep them as the

original author intended. The total number of items from these two scales that were used in this

study was 13. Appendix A contains a complete copy of the questionnaire packet that the

caregivers filled out. Section 1 contains the 13 items that were used to measure family caregiver

quality of life. The burden subscale items were 1, 2, 3, 4, 5, 7, 8, 9, 10 and 11. The financial

concerns subscale included items 6, 12 and 13.

Validation of the CQOLC in a pediatric oncology population occurred in a two-phase

process. The first phase of the instrument validation involved the convening of an expert panel

to review the instrument for content validity. The panel was made up of members of the

Hematology/Oncology Division in the Department of Pediatrics at the University of Florida. In

order to establish content validity of the instrument the role of the panel was to review the

CQOLC to assess the clarity and relevance of the items to the target population of family

caregivers of children with cancer. Content validation allows for the assessment of whether the

items adequately represent a performance domain or construct of specific interest (Crocker &

Algina, 1986). The panel also determined if any items should be removed or modified. Before

presenting the instrument to the panel minor grammatical changes were made to the instrument

to make the wording relevant to family caregivers of children with cancer. Table 4-1 shows the

four items, used in this study, that were changed along with the original items as they appear in

the original version of the CQOLC.









Along with the review and modification of items the expert panel was also asked to advise

on the actual administration of the instrument. They looked at response options for the family

caregivers, time specification for recall (only back 7 days), administration strategy (interview or

self-completion), time to complete, readability of the instrument (including order of the items)

and scoring for possible changes that need to be made to accommodate the target population.

The only recommendation by the panel was to change the order of the items as they were

originally presented to them. This change meant removing the item "I am frightened my

child/infant will die" as the first item the caregivers would see and moving it to later in the

survey. The panel did not feel comfortable with asking the caregivers to think about the

potential death of their child as the first item they would complete related to this study.

The second phase of the validation process was to establish reliability and validity

estimates for the CQOLC within a population of family caregivers of children with cancer.

Family caregivers were recruited from the pediatric oncology department of the University of

Florida Shands Cancer Center (UFSCC) located in Gainesville, Florida. The clinic is in

operation five days per week and sees approximately 15 patients a day. Eighty to ninety new

patients a year seek treatment.

Reliability was established by measuring the internal consistency reliability of the overall

instrument along with the two subscales as well. Internal consistency is a reflection of "the

extent to which items measure various aspects of the same characteristic and nothing else"

(Portney & Watkins, 2000). Cronbach's coefficient alpha (u) was used as the measure of

internal consistency, which ranges from 0.00 to 1.00. Higher levels of a are expected to be

found for instruments that show high internal consistency with acceptable levels above 0.70.









Convergent validity was established by looking at how the well the family caregiver's

quality of life, as measured by the modified CQOLC, correlated with the measures for demands,

medication administration hassles and appraisal of stress. To establish the presence of

convergent validity, Pearson's correlations were expected to be high between the scores on the

CQOLC and the scores for demands, hassles and stress appraisal.

Family Caregiver Quality of Life

The second obj ective of this proj ect was to study how the quality of life of family

caregivers of children with cancer is influenced by factors associated with a cognitive appraisal

model of stress. Primary factors of interest included measures of family caregiver burden (the

demands of family caregiving and the level of hassles associated with medication management

of a child with cancer) and the family caregiver' s appraisal of stress associated with caregiving.

Secondary variables of interest in terms of their role in predicting family caregiver quality of life

were sociodemographic variables tied to patient characteristics (age and gender), family

caregiver characteristics (age, gender, level of social support, marital status, employment status,

ethnicity, education level, relationship to the patient, household income and medical expense

coverage) and illness character stics (time since diagnosis s/re-diagnosi s and number of current

medications).

Instruments used to meet this obj ective included the CQOLC, the Care of My Child with

Cancer (CMCC), the Family Caregiver Medications Administration Hassles Scale (FCMAHS)

and the Appraisal of Caregiving Scale (ACS) along with questions used to collect demographic

information.

The Care of My Child With Cancer

The Care of My Child with Cancer (Keegan Wells et al., 2002) was used to measure

caregiving demands. The instrument consists of 28 items with which family caregivers identify









both the time spent in caregiving activities, and the difficulty/effort associated with these various

caregiving activities. Items are scored on a 5-point Likert-type scale with time broken down as

none, <1 hour/week, 1-2 hours/week, 2-5 hours/week and >5 hours/week. Effort/difficulty is

also scored on a 5-point Likert-type scale including none, a small amount, moderate, quite a lot

and a great deal as the response choices. Individual demand scores are calculated by taking the

square root of the product of reported time score and effort score for each item and then

summing the scores for all the items. Overall scores are a sum of the individual calculated

demand scores with a total range of 28 to 140. Higher scores estimate higher levels of demand

associated with caregiving.

Items for the instrument were developed through a two-step process including a review of

literature and feedback from pediatric oncology nurses. An expert panel was formed of eight

leading pediatric oncology nurses to assist in the initial formation of items. The panel was used

to establish content validity of the instrument. The instrument was validated by a sample of 158

primary family caregivers (153 provided complete usable data) of children being treated at one

of nine participating Pediatric Oncology Group institutions. Internal consistency was established

through the calculation of Cronbach' s alpha, which was 0.93. Test-retest reliability was reported

using Pearson's product-moment coefficient. A value of 0.90 was calculated following a retest

interval of 3 to 7 days (Keegan Wells et al., 2002).

As described earlier, there was a concerted effort to reduce the amount of burden placed on

caregivers who agreed to participate in this study. For measurement of the demands of

caregiving a 13 item subscale identified in the initial development of the instrument was used

rather than using the entire instrument. Like the burden subscale used from the CQOLC, the

items in the demands of caregiving sub scale that was used were focused primarily on the









emotional impact of the family caregiver and that of the caregiver' s immediate family. The

items used can be found in the complete questionnaire included as appendix A. The 13 demands

items are all in section 3 of the questionnaire.

The Family Caregiver Medication Administration Hassles Scale

The Family Caregiver Medication Administration Hassles Scale (Travis, Bernard,

McAuley, Thornton, & Kole, 2003) is a multidimensional measure of the hassles family

caregivers face when dealing with medication administration. The FCMAHS was used to

measure the second component of family caregiver burden being measured, which was family

caregivers' assessment of how much of a hassle it was to be responsible for administering

patients' medication.

The complete instrument consists of 24 items that make up four subscales (information

seeking/information sharing, safety issues, scheduling logistics and polypharmacy). The items

within the four subscales address areas of caregiving that are specifically tied to medications use

and that cover responsibilities that fall within the role of the family caregiver. Along with the

four subscale scores the instrument also allows for an overall score of medication administration

hassles. The overall score will be used in the analysis phase for this project.

Items are scored on a 6-point Likert-type scale (0=no hassles 5=worst of all hassles) and

the instrument has a maximum score of 120 for the overall hassle rating. Higher scores represent

higher hassle assessment for medication administration. A three-phased approach was used to

develop and validate the instrument including instrument development, pilot testing and field

testing/instrument evaluation.

A total of 158 family caregivers providing medication administration support to

chronically ill adult patients were recruited to help with psychometric testing of the FCMAHS.

Internal consistency reliabilities for the four subscales ranged from a=0.80 to a=0.92. An









overall internal consistency reliability score of oc=0.95 was also calculated. Two-week test-retest

reliabilities were calculated for each of the subscales with scores ranging from 0.78 to 0.85. The

overall instrument test-retest reliability was 0.84. Construct validity was also analyzed by

examining correlations of the total scale score and subscale scores with scores on the Medication

Complexity Index (MCI) and the Modified Caregiver Strain Index (MCSI). Subscale scores

significantly correlated with the MCI and MCSI and ranged from r=0. 19 to r-0.29 and r=0.34 to

r=0.40 respectively. Overall scale scores were significantly related to the MCI (r-0.19) and the

MCSI (r=0.44) as well suggesting modest construct validity (Travis et al., 2003).

For this study only items from the safety issues sub scale were used. The items used can be

found in the complete questionnaire included as appendix A. The five medication administration

hassles items are all in Section 4 of the questionnaire.

Appraisal of Caregiving Scale

Family caregiver appraisal of stress was measured using the Appraisal of Caregiving Scale

(Oberst 1991). The current version of the instrument consists of 27 items that look at family

caregiver appraisal responses to five situations associated with caring for a sick family member.

The situations covered include: 1) caregiving tasks and responsibilities, 2) relationships and

interpersonal support, 3) lifestyle, 4) emotional and physical health and 5) overall personal

impact. Two types of stressful appraisal (threat and general stressfulness) and one type of

positive appraisal (benefit) are measured by the instrument making up three sub scales. Family

caregivers respond to each of the 27 items using a 5-point Likert-type scale with choices ranging

from "very false" (1) to "very true" (5). Scores are calculated for each of the three types of

appraisal measure. There is no overall score of appraisal.









The threat appraisal sub scale consists of 13 items with scores ranging from a low of 13 to a

high of 65. The general stressfulness subscale is made up of eight items with scores ranging

from 8 to 40. All items in this subscale are reverse scored. The final subscale of benefit

appraisal is made up of six items with scores ranging from 6 to 30. For all of the subscales,

higher scores correspond to higher levels of appraisal for the given subscale, that is, greater

levels of threat appraisal, higher levels of general stressfulness and higher benefit appraisal.

Instrument validation was established using an aggregated sample of 240 family

caregivers. Validation was established using construct validity and internal consistency.

Construct validity of the ACS subscales was established by testing theoretically generated

hypotheses about the correlation between the two stressful appraisal subscale scores and a

number of family caregiver and illness/caregiving situation antecedents. Negative and

significant relationships were found between threat appraisal and family hardiness (r=-0.36),

economic status (r--0.20) and family caregiver health (r--0.29). Results were as hypothesized

with threat appraisal decreasing as family hardiness, economic status and family caregiver health

improved. General stressfulness was significantly correlated only to family hardiness (r=-0.36).

Four additional antecedents tested for significant relationship with threat and general

stressfulness appraisal were caregiving demands, caregiving difficulty, seriousness of illness and

patient dependency. Positive and significant relationships were found between all four

antecedent variables and both threat appraisal (r range = 0.13 to 0.58) and general stressfulness

(r range = 0.20 to 0.35). The results supported the proposed theories that as family caregiver

demands, family caregiving difficulty, seriousness of illness and patient dependency get worse,

the levels of negative stress increase (Oberst, 1991).









Correlations between benefit appraisal and the same seven antecedent variables discussed

above were also calculated. In looking at these correlations there was no initial hypothesized

expectations before testing the relationships. Results showed that benefit appraisal was

significantly correlated only to family hardiness (r-0.25), suggesting that as family hardiness

improves caregiving is viewed as more beneficial (Oberst, 1991).

Reliability of the ACS was established by calculating internal consistency (Cronbach' s

alpha) for each of the three subscales of the instrument. The threat appraisal subscale had a

Cronbach's alpha of 0.90. General stressfulness appraisal subscale had a calculated Cronbach's

alpha of 0.73. The benefit appraisal subscale had an internal consistency value of 0.74 (Oberst,

1991).

The focus of this study was solely on the negative effects of caregiving. Because of this

specific focus, only the items from the threat appraisal sub scale were used to measure appraisal

of stress. For a complete review of the 13 items used in the study, the complete questionnaire

can be found in Appendix A. The items for stress appraisal make up Section 5 of the

questionnaire.

Study Constructs Dependent and Independent Variables

Listed in Table 4-2 below are the variables that were collected in the study along with their

operationalization and a source for the data. The purpose of measuring the endogenous

antecedent variables, the mediating variable and the outcome variable are discussed in more

detail below.

Family Caregiver Burden

Family caregiver burden is a multidimensional measure of the impact that providing

caregiving has on the family caregiver. Given and colleagues (2001) identified burden as a

"multidimensional biopsychosocial reaction resulting from an imbalance of care demands









relative to family caregivers' personal time, social roles, physical and emotional states, financial

resources and formal care resources given the other multiple roles they fulfill." For this study

burden was looked at via two different aspects, family caregiver overall demands and family

caregiver hassles associated with medication administration management.

Family caregiver demands

Demands of caregiving reflect the amount of difficulty and time that family caregivers

must devote to taking care of their child with cancer. Tasks fall within a number of categories

and require different levels of commitment from the family caregiver. Demands will be

measured using The Care of My Child With Cancer instrument. Included in the instrument are

demands related to physical care, emotional care, finances, family/interpersonal relationships and

communication.

Medication administration hassles

Hassles reflect what are considered minor events that individuals appraise as threatening to

their well-being (Lazarus & Folkman, 1984). Individually the threat associated with hassles is

considered fairly weak. However as hassles begin to accumulate over time their impact becomes

more significant and their effects on an individual become more noticeable. Medication hassles

were identified by Travis and colleagues as "minor daily irritants that family caregivers

experience when they assist a dependent family member with medication regimens" (2003). The

Family Caregiver Medication Administration Hassles Scale was used to quantify the overall

measure of daily hassles in family caregiving related to medication administration in this study.

Stress Appraisal

Oberst defined appraisal as "the evaluation of potentially stressful person-environment

encounter in terms of its personal meaning or significance to well-being" (Oberst, 1991). These

potentially stressful events can be evaluated by family caregivers into one of three categories: (1)










benign no impact on well-being, (2) beneficial enhancing well-being and (3) stressful-

negative impact on well-being. Stressful appraisal can then be classified as a (1) harm/loss -

damage has already been done, (2) threat potential for damage or harm and (3) challenge -

potential for gain or growth. The focus in this study will be solely on threat appraisal associated

with caregiving for a patient with cancer. Threat appraisal will be measured using the threat

appraisal subscale items of the Appraisal of Caregiving Scale.

Family Caregiver Quality of Life

The outcome variable for this proj ect is the family caregiver' s self-reported quality of life.

Measurement of this outcome involved using two of the subscales of the Caregiver Quality of

Life Index -Cancer Scale as described in detail above.

Subj ects

To be included in this study, participants had to identify themselves as the primary family

caregiver for a child with cancer. A primary family caregiver, as defined for this study, is an

individual who is responsible for assisting the patient the maj ority of the time in handling both

their physical and emotional needs related to their illness. Along with being the primary family

caregiver the participant had to also meet the following inclusion criteria: 1) be the parent or

legal guardian of the pediatric (under 21 years of age) oncology patient, 2) be at least 18 years of

age, and 3) be proficient in English for both reading and speaking.

Procedures

Following check-in at the pediatric cancer center infusion room, the primary investigator

approached family caregivers to explain the purpose of the study. Family caregivers that met the

inclusion criteria and elected to participate in the study completed a consent form and were then

given a questionnaire packet to complete. A copy of the consent from is in Appendix B while

the questionnaire can be found in Appendix A. Family caregivers were asked to complete the










packets while in the clinic during the patient' s appointment. It was not uncommon for the

patient' s infusion session to last for many hours. All caregivers that participated in the study by

completing a questionnaire in full were given a Publix $20 gift card as a sign of thanks.

If more than one caregiver was present and identified themselves as sharing in the

caregiving responsibilities, then both family caregivers were allowed to participate and were

included in the study sample. Each family caregiver filled out their own survey.

Questionnaire packets were manually, numerically stamped with random numbers

allowing all item results, could be combined later on should they become separated. It also

helped to identify which consent form went with which questionnaire. A list identifying family

caregiver to questionnaire packet was kept in a separate computer database that was password

protected. Only the primary investigator had access to the list.

Data from the survey were all entered into a Microsoft Excel spreadsheet that was

password protected and then stored on a networked computer within the University Of Florida

College Of Pharmacy. This spreadsheet had a separate login that only the primary investigator

had access to.

Statistical Analysis

Basic descriptive statistics were run for all variables to establish means and standard

deviations for variables measured on continuous scales and frequencies for categorically

measured variables. The focus then shifted to establishing reliability and validity of the CQOLC

for use in a pediatric oncology setting to go along with the content validation already carried out.

Following the tests for validity and reliability the focus of the statistical analyses then shifts to

looking at how the data fit the proposed model of family caregiver quality of life through a path

analysis procedure based on the works of Baron and Kenny (1986).









Internal Consistency Reliability

To meet obj ective one of this study, we first established the internal consistency reliability

score for the overall score of the CQOLC. The reliabilities of the two subscales of the

instrument were also established. We also ran item-total statistics to determine if the instrument

would perform better by removing items identified in the analysis that were potentially reducing

the overall reliability.

Convergent Validity

The second step to confirm the validity of the instrument was to run convergent validity

tests to see how well the CQOLC correlated with the other three main instruments used to

measure caregiving demands (CMCC), medication administration hassles (FCMAHS) and stress

appraisal (ACS). Pearson' s correlations were run during this phase of the validation process to

look for convergence.

Path Analysis and Mediation Testing

Meeting obj ective two of this study was a four step process that occurred in two separate

phases.

Tests of association

The first phase of this process involved establishing the relationships between each of the

demographic variables (for patients, caregiver and the disease) and the family caregiver quality

of life assessment via either point bi-serial correlations or Pearson correlations for most of the

analyses. Analysis of variance was used to look for relationships between family caregiver QOL

and education level, income and ethnicity. This was done since these three variables were all

measured using multiple categories rather than two. This phase was done to identify which of

the demographic variables were significantly related to family caregiver quality of life in an









effort not to flood the path analysis regressions with variables that were not related to the

outcome.

Only variables that were significant were to be included in the final steps of the process.

As outlined in the next chapter none of the variables were significantly related to family

caregiver QOL and therefore were not included in any further analysis.

Path analysis

The second phase of the process to meet obj ective two involved a three-step multistage

regression analysis based on the work of Baron and Kenny (1986). These regressions served two

main functions. The first was to determine the path coefficients for the final model enabling us

to show how each of the variables influenced family caregiver QOL. The second purpose for

these regressions was to determine whether or not the model was a fully mediated model with the

effects of demands and hassles on family caregiver QOL passing through stress appraisal. All

data analyses were conducted using SPSS version 15.0 for Windows (6 Sep 2006). Attempting

to establish that the model was fully mediated the following hypotheses were tested:

H1. Regressing stress appraisal on both caregiving demands and medication
administration hassles will result in both demands and hassles contributing
significantly to stress appraisal.

H2. Regressing family caregiver quality of life on both caregiving demands and
medication administration hassles will result in both demands and hassles contributing
significantly to family caregiver quality of life.

H3. Regressing family caregiver quality of life on caregiving demands, medication
administration hassles and stress appraisal will result in only stress appraisal
contributing significantly to family caregiver quality of life.

The first regression equation run was to test Hypothesis 1 that demands of caregiving (X1)

and hassles of medication administration (X2) which were the independent variables had a

significant effect on stress appraisal (Y1), the mediator variable:

E(Y1) = P1X1 + P2X2









The second regression, which tested Hypothesis 2, looked at whether or not demands of

caregiving (X1) and hassles of medication administration (X2) had a significant effect on family

caregiver quality of life (Y2), the dependant variable:

E(Y2)= -2X1 + P2X2

The final regression that tested Hypothesis 3 looked at the effects of demands of caregiving

(X1), hassles of medication administration (X2) and stress appraisal (X3) On family caregiver

quality of life (Y2):

E(Y2) = P3X1 + P3X2 + 3X3

Once all the models were run the significant standardized Beta coefficients (oc < 0.05) from

the first and third model were plugged into the depiction of the theoretical model to look at direct

and indirect effects of all the variables in the model to better understand the influence of each of

the variables on family caregiver quality of life. The initial model proposed is represented by

figure 4-1.

The direct effects are the standardized Beta coefficients, while the indirect effects had to be

calculated. Based on the final model, indirect effects were calculated only for demands of

caregiving and hassles of medication administration. This calculation was done by multiplying

the direct effect coefficients of demands or hassles respectively on stress to the direct effect

coefficient of stress on family caregiver quality of life.

Once the direct and indirect effects of the variables were calculated, the total effect of each

of the three variables on family caregiver quality of life was determined. For demands and

hassles, total effect was the sum of the direct effect plus the product of all the indirect effects for

each variable. Total effect for stress appraisal was strictly the direct effect coefficient to family

caregiver quality of life.









Along with determining the effects of the independent variable and mediating variable on

family caregiver quality of life, the three regressions also assisted in establishing whether or not

the final model was fully mediated or partially mediated.

A mediated model would meet the following conditions to show full mediation. First, the

independent variables in equation one listed above would have an effect on the mediator

variable. In the second equation listed, the two independent variables would have an effect on

the dependent variable. Finally for the third equation listed the mediating variable would have

an effect on the dependent variable while the effects of the two independent variables would no

longer be present (Baron and Kenny, 1986).

Sample Size

In order to establish an appropriate sample size required for this study a number of sample

size estimates were calculated using value estimates from previous studies based on a cognitive

appraisal model of stress. The calculations were done using NCSS and PASS (2004, Number

Cruncher Statistical Systems).

To determine sample size requirements, estimates for total variance (R2) Of the final model

ranged from 0.4 to 0.9. A conservative alpha value of 0.01 was used along with a beta estimate

of 0.2 (equating to a power level of 0.8). At a minimum there will be three independent

variables (the mediator and both of the endogenous antecedents) in the final model predicting

family caregiver quality of life. Estimates of sample size for a model with three independent

variables ranged from 30 for a low R2 Of 0.4 to 13 for a high R2 Of 0.7. At a maximum, the final

predictive model for family caregiver quality of life will contain 12 independent variables (the

mediator and all antecedent variables). Estimates for sample sizes using 12 independent

variables ranged from 50 for a low R2 Of 0.4 to 26 for a high R2 Of 0.7. Based on these estimates




















Original CQOLC items Reworded items for the pediatric
oncology setting
I worry about the impact my loved one's illness has I worry about the effect of this illness on
had on my children or other family members my other children
I fear the adverse effects of treatment on my loved I am worried about the harmful effects of
one the treatments on my child/infant
It upsets me to see my loved one deteriorate It upsets me to see my child/infant get
sicker
I fear my loved one will die I am frightened my child/infant will die


Table 4-2. Study constructs and sources for data collection.
Exogenous Antecedent Variables Source of
Oprational Definition Data
Patient Characteristics:
Female=1 Patient
Gender
Male=0 Chart
Patient
Age Age in months Chart
[Illness Characteristics:
Total number of prescription Patient
Number of medications medications currently being Chart
taken
.Number of months since Patient
Time since diagnosis
diagnosis Chart
Family Caregiver Characteristics:
Female=1 Caregiver
Gender
Male=0
Age Age in Years Caregiver
Married = 1 Caregiver
Marital Status.
Not Marnied = 0
Part/Full Time=1 Caregiver
Employment Status
Unemployed=0
Yes=1 Caregiver
Presence of Social Support N=


a sample of 50 family caregivers will be used for this study. This size sample should allow for

sufficient power in both reduced and full predictive models while not being overly powerful.


Table 4-1.


List of items from the original CQOLC that were amended to fit the target population
of family caregivers of pediatric oncoloa tins


Asian/Pacific Islander-0
Caucasian=1
Black (non-Hispanic)=2
Hispamic/Latino= 3
Native American=4
Refused=9


Caregiver


Ethnicity










Table 4-2. Continued
Grade School=0 Caregiver
Some High School=1
High School=2
Some College=3
Education Level
College Degree=4
Some Graduate School=5
Graduate School=6
Refused=9
Parent=1 Caregiver
Relationship to patient
Other-0
Under $14,999=0 Caregiver
$15,000-$24,999=1
$25,000-$34,999=2
$35,000-$49,999=3
$50,000-$74,999=4
Household Income
$75,000-$99,999=5
$100,000-$149,999=6
$150,000-$199,999=7
Over $200,000=8
Refused=9
Endogenous Antecedent Variables
5-point Likert-type scale (13 Caregiver
Demand (Effort/Difficulty & Time)
items)
6-point Likert-type scale (5 Caregiver
Medication Hassles
items)
Mediating. Variable
5-point Likert-type scale (13 Caregiver
Stress Appraisal
items)
Outcome Variable
5-point Likert-type scale (13 Caregiver
Caregiver Quality of Life
items)


Demands of caregiving


Caregiver quality
Stress appraisal of life

Medication
administration hassles


Figure 4-1. Proposed model of family caregiver quality of life









CHAPTER 5
RESULTS

This chapter presents the results of the study. It presents the descriptive characteristics of

the family caregivers that were surveyed. Descriptive data for patient and disease characteristics

are also presented. Results from the surveys items tied to the four main variables in the cognitive

appraisal of stress model will be described and finally the results tied specifically to the research

hypotheses will be presented.

Family Caregiver Demographics

A total of 50 caregivers completed questionnaires for this study. In all 55 caregivers were

approached with five declining to participate. One caregiver declined to participate because she

was the patient' s grandmother and did not feel comfortable answering the questions. Another

caregiver began the survey but never completed it. The other three who declined were part of a

family unit. This equates to a response rate of 91% for all caregivers that were approached.

Demographic characteristics of the family caregivers are shown in table 5-1. Seventy-

eight percent of the respondents were female with a mean age for all responding of 37.82 years

old (SD=9.36). The youngest caregiver was 22 while the oldest was 61. Of those who

responded, approximately 67% stated they were married and 51% said they were either working

part-time or full time. Ninety-four percent of the caregivers were the parent of the child with

cancer while three (6%) of those that filled out a questionnaire were the grandparent of the child.

The family caregivers were asked whether or not there was a presence of social support for

them, which was defined as family or friends assisting with caregiving duties on a consistent

basis. Seventy-two percent responded that they were receiving social support.









A breakdown of ethnic background revealed that those who participated, 74% were

Caucasian, 22% were African American and 2% were Hispanic. One person refused to identify

their ethnic background.

In terms of education level, 46% of the caregivers had an education level of high school or

less. Sixty-two percent identified their annual household income during the previous year at less

than $35,000. Coverage for the child's medical expenses indicated, 48% relied on private

insurance, 40% relied on some form of government insurance while only one caregiver said they

paid for the care out of private funds.

Patient and Disease Characteristics

The patient and disease characteristics were all obtained from chart reviews conducted by

the primary investigator and research assistants. Chart reviews could only be conducted on

patients under the age of 18 for whom the caregiver could grant access to the patients chart.

Patients who were at least 18 years old at the time their family caregiver filled out their

questionnaire packet were not asked for consent and therefore data was not pulled from their

chart. There were eight caregivers that participated whose child was 18 or older.

Some of the patients (n=6) in the study had two caregivers fill out surveys. These units

were all husband and wife pairs that saw themselves as sharing in the role of primary caregiver.

Data about patients who had multiple caregivers fill out a survey was entered into the database

only once. Because of the limited age restrictions and the fact that some patients had multiple

caregivers fill out surveys, the results of the patient and disease characteristics are not the same

N as in the family caregiver results described above. For one of the patients we could not clearly

identify their date of diagnosis so the N for time since diagnosis is lower than the other three

variables presented in Table 5-2.









On average the patients under 18 years of age who were being treated in the cancer center

and whose family caregiver participated in this study had an age of 86.64 months (approximately

7 years) (SD=51.40 month). The youngest patient being treated at the time was 16 months old (1

year and 4 months) while the oldest being treated for whom we collected data was 17 years and 9

months. The maj ority of patients (61%) that were being cared for and that we collected data on

were boys.

Looking at the disease characteristics it was found that it had been an average of 10.03

months (SD= 8.56; range 1-34 months) since the children had been diagnosed or re-diagnosed

with cancer. The average number of medications that the family caregivers were assisting the

children in taking was 3.61 (SD=2.48). Some patients were currently taking no medications at

home while one was currently on 11 different medications.

Cognitive Appraisal of Stress Model Components

The main components of the cognitive appraisal of stress model that were measured were,

the family caregiver' s perceived quality of life, the level of demands associated with the

caregiving role, the measure of hassles associated with administering medication to the sick child

and the caregiver' s appraisal of their stress level associated with their caregiving role. Table 5-3

outlines the results for the overall scores that were calculated for each of these components. The

subsections that follow take a closer look at how the caregivers reacted to certain items within

each of the scales used to measure the cognitive appraisal of stress model components.

Family Caregiver Quality of Life

Family caregivers answered 13 items that were used to measure their current quality of

life. These 13 items accounted for two (burden and financial) of the four factors associated with

the original CQOLC. All items were scored on a 5 point Likert scale ranging from 0 (not at all)

to 4 (very much).









Most researchers consider a Cronbach's alpha (a) value of at least 0.70 to suggest

reliability of the instrument therefore that is what we set as the criterion with the instruments

used in this study. With regards to the CQOLC, the overall instrument had an alpha of 0.86

which suggested strong reliability. The subscale data produced alpha values of 0.85 for the

burden component and 0.77 for the financial component indicating that the subscales also

demonstrated good reliability. The results for the CQOLC reliability will be discussed in more

detail later in the chapter.

Table 5-4 shows the results for each item on the modified CQOLC and includes the mean,

standard deviation and median.

The average family caregiver had an estimated quality of life score of 31.04 (SD = 10.43).

The maximum score possible was 52 (0 was the lowest score possible) with higher scores

suggesting a better quality of life. The lowest score recorded for this group of caregivers was a

five, suggesting that this caregiver had low reported quality of life.

A closer look at the individual items revealed three items that appeared to have the most

impact on reducing the family caregivers overall quality of life. Individual items were reverse

coded when the overall quality of life score was calculated. This was not done when looking at

the items individually, therefore, higher scores on the individual items suggest a lower quality of

life. The item that had the most negative contribution to quality of life scores was "It upsets me

to see my child/infant get sicker". The average score for this item was 2.90 (SD = 1.34). Nearly

50% of the caregivers surveyed rated this item as a 4 (very much true) on the 0 to 4 Likert-type

scale used.

The next item that seemed to have the greatest impact on reducing a caregiver's quality of

life was "I am worried about the harmful effects of the treatment on my child". The average









score for this item was 2.42 (SD = 1.18). More than a quarter of the caregivers felt this statement

was very much true. Both of these items were part of the burden factor from Weitzner' s original

CQOL factor analysis.

In terms of the financial factor, only one item appeared to stand out from the other two

with regards to having a negative impact on the family caregiver's quality of life. Caregivers

reported an average score of 1.94 for the item "I am under financial strain", with 36% feeling

this item was quite a bit true or very much true when they thought about the impact of their

caregiving role over the past seven days.

On the opposite side of the spectrum, one item stood out among the others as the one

having the least negative impact on the family caregiver's quality of life and that was "I am

discouraged about the future". The average score for this item was only 0.94 (SD = 0.98).

Eighty percent felt that this item was only a little bit true or not at all true.

Demands of Caregiving

The reliability results showed that the instrument had strong reliability with an alpha value

of 0.84. The average score reported by the family caregivers in terms of how demanding they

felt it was to handle some of the activities tied to their caregiving role was 37.37 (SD = 9.71).

The lowest score reported was 16.90 while the highest assessment of demands was 54.69. All of

the 13 items included from the original instrument, The Care of My Child with Cancer, were

scored on a 5-point Likert-type scale. For each activity the family caregivers scored both the

time they took to complete each activity (1 = did not do, 5 = >5 hours/week) and how much

effort/difficultly was tied to completing the task (1 = none, 5 = a great deal). The instrument had

a range of possible scores from 13 to 65 with higher scores suggesting the demands of

caregiving to be more time consuming and difficult.









Table 5-5 contains the individual item results for the Care of My Child with Cancer

demands instrument. Results listed include the mean, standard deviation and median score for

each item. Tables 5-6 and 5-7 contain the means, standard deviations and medians for the time

and effort/dimfculty component of each item on the instrument respectively.

A closer look at individual item scores showed three caregiving activities that were rated in

the "moderate" range of demanding. The most demanding task was "providing emotional

support for your child with cancer," which had an average score of 3.34 (SD = 1.19). Just over

50% of the caregivers stated they spent more than 5 hours a week providing emotional support to

their child. Seventy-two percent saw the task to be at least moderately dimfcult to a great deal

dimfcult.

The other two demanding tasks were "planning activities for your child around the

treatment and illness" and "taking care of discipline and/or behavior problems of the child with

cancer". They each had overall means of 3.30 (SD = 1.30) and 3.02 (SD = 1.42) respectively.

The time commitments for each activity were fairly high with 68% of the caregivers spending

more than 2 hours a week planning activities for their child, while 48% spend the same amount

of time taking care of discipline of their child. In terms of the dimfculty completing each task,

64% found planning activities to be at least moderately diffcult while 56% found discipline to

be at least moderately demanding.

The least demanding task of all those scored was "communicating information about

cancer to schools, day care, babysitters, extended family and friends". On average this activity

had a total demand score of 2.16 (SD = 1.31). Other tasks that were viewed as only slightly

demanding included "getting information on your child's illness and treatment", 2.34 (SD =

1.17) and "providing emotional support for your spouse/partner," 2.38 (SD = 1.31).









Hassles of Medication Administration

For this study, only the items from the safety issues subscale of the Family Caregiver

Medication Administration Hassles Scale were used to measure hassles. Reliability results tested

produced an alpha value of 0.78 which suggested that the instrument measuring medication

administration hassles had strong reliability. The overall average for the total hassles score was

3.92 (SD = 4.02). The highest score reported was 14 while almost one fourth of the caregivers

had a total score of 0 suggesting medication administration was no hassle at all. The instrument

had a possible range of scores of 0 to 25, with higher scores suggesting more hassles associated

with medication administration.

Table 5-8 contains the results for each item on the Family Caregiver Medication

Administration Hassles Scale and includes the mean, standard deviation and median.

Details with regard to the individual items do not show much of an impact of medication

administration on the caregiving role. On every item, between 44% and 66% of the family

caregivers did not see any hassle associated with the specific task listed. Two items showed

slightly higher reported scores at the upper ends of the scale. Both "recognizing adverse (bad)

side effects" and "knowing when to hold, increase, decrease a dose or discontinue the

medication" had 12% of the respondent reporting that these activities were a moderate hassle to

one of the worst hassles of all. The other three items measured showed only between 4% and

6% of the respondents in this high range of scoring medication administrative activities as being

a hassle.

Appraisal of Caregiving

The final instrument used was the threat subscale of the Appraisal of Caregiving. Like the

other instruments used testing was also done for the Appraisal of Caregiving items to establish

the reliability of the instrument. The results for this test like the others before suggested that the










instrument did in fact show high reliability (a = 0.93). The 13 items in this subscale had a

total mean score of 28.26 (SD = 12.33). The scale had a potential range of scores between 13

and 65. The lowest score recorded from this sample was 13 while the person with the highest

perception of their caregiving role as threatening had a score of 56. Higher scores indicated a

higher level of stress appraisal for the family caregiver.

Table 5-9 contains the results for each item on the Appraisal of Caregiving and includes

the mean, standard deviation and median.

The item that had the biggest impact on the caregiver' s perceived stress was "I feel a sense

of loss at not being able to meet all my responsibilities". The item carried an average score of

2.64 (SD = 1.3 8). Just over a quarter of the caregivers felt that for them this statement was more

true than false or very true.

Another item that indicated higher levels of perceived stress was "I'm concerned that this

situation will cause financial hardship for me in the future." The mean score was 2.48 (SD =

1.5 1). For this item 28% of the caregivers indicated that this statement was more true than false

or very true. Looking at the frequencies for each response option, this item had the highest

number of caregivers (n=8) indicate that this statement was appraised as very true.

Two items also had just over a quarter of the caregivers agree that they were more true

than false or very true. The two items were "This situation threatens to overwhelm me" and "I'm

afraid my own physical health will begin to suffer."

One other significant item was "I'm afraid that in the future I won't have the energy and

endurance I have now." While the average score was not high, 2.30 (SD = 1.49), this particular

item had the second highest frequency of responses (n=7) in terms of appraising the situation as

very true.









The item that appeared to have the smallest impact on overall stress appraisal was "I worry

that I won't be able to help the person needing my care in the future." The average score was

1.70 (SD = 1.22) and 82% of the caregivers saw this item as either more false than true or very

false.

Psychometric Properties of the CQOLC

The first obj ective of this study was to establish the reliability and validity of the modified

CQOLC in a population of family caregivers of children with cancer to measure overall

caregiver quality of life. The following sections will describe the results of these analyses.

Internal Consistency Reliability

The overall instrument had a Cronbach' s alpha of 0.86. Looking at the subscales, the

burden subscale (items 1, 2, 3, 4, 5, 7, 8, 9, 10 and 1 1) had a Cronbach's alpha of 0.85. The

Cronbach's alpha for the Einancial concerns subscale (items 6, 12 and 13) was calculated at 0.77.

Item-total statistics were reviewed for the complete scale and no items were identified as

improving the instrument should they be removed.

Table 5-10 contains the Cronbach's alphas calculated for this study and also the results

from the initial Cronbach' s alpha calculations that Weitzner and colleagues (1999a) calculated

during the initial instrument development. The table shows the consistency in scores between

the original data that Weitzner reported and what was found in this newly tested population of

family caregivers of children with cancer.

Convergent Validation

The second step to confirm the validity of the instrument was to run convergent validity

tests to see how well the CQOLC correlated with the other three main instruments used to

measure caregiving demands (CMCC), medication administration hassles (FCMAHS) and stress









appraisal (ACS). Pearson' s correlations were run during this phase of the validation process to

look for convergence.

The correlation between the modified CQOLC and The Care of My Child With Cancer

(measuring level of care giving demands) was -0.61 (p < 0.01). The Pearson correlation between

the modified CQOLC and the Appraisal of Caregiving (measuring level of threat) was -0.82 (p <

0.01) which as expected was highly negative and significant.

The calculated Pearson correlation between the modified CQOLC and the Family

Caregiver Medication Administration Hassles Scale was -0.43 (p = 0.01). While the result was

significant it is only moderately negative.

Evaluation of the Cognitive Appraisal of Stress Model

The goals of the next sections are to look at the results that focused on the research

questions 2 through 6. These questions examine how well the data fit the predicted model.

Evaluating CQOLC Correlations

Before delving into how well the data collected fit the proposed model we first tested for

relationships between the total CQOLC scores and the variables related to patient, caregiver and

disease characteristics. The purpose of this step was to identify which of these factors had a

significant relationship with the family caregiver' s quality of life so that those variables could

then be included in the final model testing.

The results from the analyses are included in Table 5-11. A look at the data shows that

none of the variables tested had a significant relationship with the family caregiver' s quality of

life and therefore none of them were included in the testing of the final model.

Stress Regressed on Demands and Hassles Hypothesis 1

As outlined in the methods section three separate regressions were run to establish whether

or not the proposed mediated model was supported and to also establish the path coefficients for









the final model. The first equation involved regressing the mediator (stress) on the two

independent variables (demands and hassles) to confirm if they were related. The results of the

analysis show that demands and hassles accounted for 5 1% of the variance in stress appraisal.

Both independent variables made significant contributions to the regression which offers support

for Hypothesis 1. The path coefficients for the regression are in Table 5-12. These coefficients

will be used in the final path model.

Quality of Life Regressed on Demands and Hassles Hypothesis 2

The second equation tested saw the family caregiver' s quality of life being regressed on

both demands and hassles. This step allowed for us to determine if a significant relationship

existed between the dependent variable and the two independent variables. The analysis showed

that the two independent variables accounted for 47% of the variance in quality of life. Both

variables contributed significantly to the regression which offers support to Hypothesis 2. The

path coefficients from this regression can be found in Table 5-13.

Quality of Life Regressed on Demands, Hassles and Stress Hypothesis 3

The third equation that was run was to establish how much variance in quality of life was

accounted for by demands, hassles and stress. Hypothesis 3 suggested that while the regression

equation would be significant, only stress would have a significant influence on quality of life

since it was hypothesized that it would fully mediate the effects of demands and hassles.

Overall, the three variables accounted for 71% of the variance in quality of life.

As predicted, stress contributed significantly to the regression and hassles did not.

Demands of caregiving also contributed significantly to the regression which was not predicted.

These results suggest that instead of a fully mediated model through stress, that the model is only

partially mediated with demands having some direct effect on quality of life along with stress.

These results fail to provide support for Hypothesis 3. The path coefficients from this regression









can be found in Table 5-14. The coefficient for stress and demands are used in the Einal path

model .

Construction of the Final Model

The Einal step in this proj ect was to put together the Einal Cognitive Appraisal Model of

Stress based on the data collected. Figure 5-1 is the revised model based on the shift in results

from a fully mediated model to a partially mediated model. The Eigure contains the path

coefficients to show the impact of the variables within the model.

Decomposition of the direct and indirect effects: To better understand the influence of

each of the variables on family caregiver quality of life we took a closer look at the direct,

indirect and total effects of the variables. Medication administration hassles had a significant

indirect effect on family caregiver quality of life via appraisal of stress (P=-0.332) as

hypothesized. Demands of caregiving had a fairly large total effect on family caregiver quality

of life but nearly 60% of that effect was indirect via appraisal of stress. As expected the direct

effect of appraisal of stress was significant and largest in the model. The results all suggest that

quality of life is negatively affected as family caregivers see higher levels of demands, hassles

and stress associated with caregiving. Table 5-15 contains the decomposition of the three

predictor variables with quality of life.

Summary of Results

This chapter presented the results of the validation of the modified Caregiver Quality of

Life Index Cancer as a measure of family caregiver quality of life in a pediatric oncology

setting. Also presented in the chapter was a test of the fit of the cognitive appraisal model of

stress to predict family caregiver quality of life.

The analysis of the modified CQOLC indicated that it is a valid instrument for measuring

family caregiver quality of life in caregivers of pediatric patients. The internal consistency of the









instrument (a = 0.86) and the sub scales (a = 0.85 and a = 0.77) were all high suggesting that the

instrument and the subscales were reliably measuring the constructs. Convergent validity testing

suggested that the modified CQOLC had, as expected, a significant negative relationship with

both the demands of caregiving and the stress associated with caregiving. Hypotheses 2a and 2c

were also supported with the correlations between the modified CQOLC and the measures of

demands and stress appraisal being highly negative and significant. When looking at the

relationship of the modified CQOLC and the hassles associated with medication management the

results were not as expected as the correlation between the modified CQOLC and the measure of

medication administration hassles was only moderately negative although significant.

None of the variables related to patient, caregiver or disease characteristics was

significantly correlated to family caregiver quality of life so none of these variables was included

in the Einal model test. The analyses confirmed that medication administration hassles and

demands of caregiving were significantly related to both stress appraisal and family caregiver

quality of life which supported both Hypotheses 1 and 2. Hypothesis 3 had predicted that when

the independent and mediating variable were all regressed on family caregiver quality of life,

only stress appraisal would significantly contribute to the regression. The results however

showed that not only did stress appraisal significantly contribute but demands of caregiving also

had a significant direct effect.

The final model ended up being modified from the proj ected model as the results

suggested a partially mediated model through stress appraisal rather than a fully mediated model.

Stress appraisal and demands of caregiving each had negative direct effects on family caregiver

quality of life with stress appraisal having the largest total effect of the three variables tested.

Along with its direct effect, demands of caregiving also had a significant indirect effect on










family caregiver quality of life through stress appraisal. The indirect effect accounted for the

majority of the demands effect on quality of life. Medication administration hassles had only an

indirect effect on family caregiver quality of life through stress appraisal. It contributed the least

to the prediction of family caregiver quality of life, with the lowest total effect of the three

variables tested. As expected all three variables in the model to predict family caregiver quality

of life had negative total effects.





Table 5-1. Family caregiver demographics
Value Percent N*
Gender 50
Female 39 78
Male 11 22
Age (in years) 49
Mean (SD) 37.82 (9.36)
Median 34
Range (low to high) 22 to 61
Marital Status 48
Married 32 66.7
Not married 16 33.3
Employment Status 49
Part/Full Time 25 51
Unemployed 24 49
Presence of Social Support 50
Yes 36 72
No 14 28
Ethnicity 50
Caucasian 37 74
African American 11 22
Hispanic 1 2
Refused to answer 1 2
Education (highest level) 50
Grade School 1 2
Some High School 4 8
High School 18 36
Some College 12 24
College Degree 8 16
Some Graduate School 1 2
Graduate School 6 12
Relationship to the patient 50
Parent 47 94
Grandparent 3 6










Table 5-1. Continued
Value Percent N*
Income 50
Under $14,999 9 18
$15,000 -$24,999 10 20
$25,000 $34,999 12 24
$35,000 $49,999 3 6
$50,000 $74,999 7 14
$100,000 $149,999 3 6
$150,000 $199,999 4 8
Over $200,000 2 4
Primary Medical Expense 50
Coverage
Private Insurance 24 48
Government Insurance 20 40
Personal Finances 1 2
Personal & Government 2 4
Government & Private 3 6
*Not all subjects answered every demographic item on the survey accounting for differences in
N.


Table 5-2 Patient and disease characteristics


Value


Patient Age (in months)
Mean (SD)
Median
Range (low to high)


86.64 (51.40)
61.5
16 to 213


Number of Medications (home use) 36
Mean (SD) 3.61 (2.48)
Median 3.00
Range (low to high) 0 to 11
Time since diagnosis (in months) 35
Mean (SD) 10.03 (8.56)
Median 6
Range (low to high) 1 to 34
*Family caregivers could not consent for all the patients and time since
diagnosis for one patient could not be identified so the patient N is lower
than the family caregiver N.










Table 5-3. Caregiver perceptions on the primary components of the cognitive appraisal of stress
model .
Scale Mean SD Range N = 50

Quality of life 31.04 10.43 5 49

Demands 37.37 9.71 16.90 54.69

Hassles 3.92 4.02 0 -14

Stress 28.26 12.33 13 -56


Table 5-4. Mean, standard deviation, and median score for each item on the modified CQOLC.
Higher scores suggest a lower quality of life. All items range from 0 to 4.
Item* Mean SD Median
I feel nervous 1.36 1.10 1.00
Increased stress and worries 1.56 1.42 1.50
I feel sad 1.24 1.21 1.00
Discouraged about the future 0.94 0.98 1.00
I feel frustrated 1.54 1.42 1.00
Under financial strain 1.94 1.43 2.00
Worry about other children 1.86 1.44 2.00
Harmful effects on child 2.42 1.18 2.00
Upset to see child sicker 2.90 1.34 3.00
I feel guilty 1.12 1.21 1.00
Frightened child will die 1.46 1.42 1.00
Concerned about insurance 1.18 1.41 1.00
Economic future uncertain 1.44 1.34 1.00
*Exact item wording can be found in appendix A
4=very much 3=quite a bit 2=somewhat 1=a little bit O=not at all









Table 5-5. Mean, standard deviation, and median score for the total demand score of each item
((effort time)1/2) On The Care of My Child With Cancer. Higher scores suggest
higher demands. Item scores ranged from 1 to 5.
Item* Mean SD Median
Emotional support for child w/ cancer 3.34 1.19 4.00
Emotional support for other children 2.70 1.25 2.50
Emotional support for extended family 2.38 1.31 2.00
Emotional support for spouse/partner 2.68 1.49 2.00
Meeting own emotional needs 2.46 1.20 2.00
Comforting child through pain 2.90 1.39 3.00
Planning activities for child with cancer 3.30 1.30 3.50
Planning activities for your family 2.92 1.31 3.00
Communicating information about cancer 2.16 0.98 2.00
Watching for and reporting symptoms 2.58 1.20 2.00
Getting information on illness 2.34 1.17 2.00
Discipline and behavior problems 3.02 1.42 3.00
Finances, bills and forms 2.70 1.23 3.00
*Exact item wording can be found in appendix A


Table 5-6. Mean, standard deviation, and median score for the time component of each item on
The Care of My Child With Cancer. Higher scores suggest higher demands. Item
scores ranged from 1 to 5.
Item* Mean SD Median
Emotional support for child w/ cancer 4.08 1.18 5.00
Emotional support for other children 3.16 1.42 3.00
Emotional support for extended family 2.80 1.40 3.00
Emotional support for spouse/partner 3.16 1.50 3.00
Meeting own emotional needs 2.56 1.37 2.00
Comforting child through pain 3.28 1.50 3.50
Planning activities for child with cancer 3.84 1.38 4.00
Planning activities for your family 3.26 1.38 3.00
Communicating information about cancer 2.58 1.25 2.00
Watching for and reporting symptoms 3.10 1.36 3.00
Getting information on illness 2.72 1.36 2.00
Discipline and behavior problems 3.42 1.57 3.00
Finances, bills and forms 3.04 1.40 3.00
*Exact item wording can be found in appendix A










Table 5-7. Mean, standard deviation and median score for the effort/difficulty component of
each item on The Care of My Child With Cancer. Higher scores suggest higher
demands. Item scores ranged from 1 to 5.
Item* Mean SD Median
Emotional support for child w/ cancer 3.10 1.23 3.00
Emotional support for other children 2.66 1.29 2.50
Emotional support for extended family 2.38 1.31 2.00
Emotional support for spouse/partner 2.60 1.53 2.00
Meeting own emotional needs 2.68 1.33 3.00
Comforting child through pain 2.86 1.43 3.00
Planning activities for child with cancer 3.12 1.47 3.00
Planning activities for your family 3.00 1.41 3.00
Communicating information about cancer 2.08 0.99 2.00
Watching for and reporting symptoms 2.50 1.28 2.00
Getting information on illness 2.40 1.28 2.00
Discipline and behavior problems 3.00 1.47 3.00
Finances, bills and forms 2.74 1.38 3.00
*Exact item wording can be found in appendix A


Table 5-8. Mean, standard deviation and median for each item on Family Caregiver Medication
Administration Hassles Scale.
Item* Mean SD Median
Admitting made a mistake 0.56 0.93 0.00
Knowing about medication 0.84 1.18 0.00
Understanding medications 0.66 0.96 0.00
Recognizing adverse effects 1.16 1.41 1.00
Giving medication safely 0.70 0.93 0.00
*Exact item wording can be found in appendix A


Table 5-9. Mean, standard deviation and median score for each item on the Appraisal of
Caregiving instrument.
Item* Mean SD Median
Things going to get worse 2.06 1.19 2.00
Haven't been doing well 2.22 1.06 2.00
Feel sense of loss 2.64 1.38 3.00
Worry I'll give up things 2.12 1.27 2.00
Won't have energy in the future 2.30 1.49 2.00
No longer anything I can do 1.94 1.28 1.00
Situation threatens to overwhelm me 2.50 1.27 2.00
Afraid my physical health will suffer 2.34 1.41 2.00
Worry less able to do things 1.94 1.17 1.00
Worry I won't be able to help 1.70 1.22 1.00
Worry emotional health will suffer 2.22 1.28 2.00
Concerned about financial hardship 2.48 1.52 2.00
Not sure can handle in the future 1.80 1.07 1.00
*Exact item wording can be found in appendix A









Table 5-10. Cronbach's alpha results for this study and the original instrument development and
validation by Weitzner et al.
Number of Cronbach's Alpha
Items
Modified CQOLC
Burden 10 0.85
Financial Concerns 3 0.77
Total 13 0.86

Initial Weitzner Instrument
Validation
Burden 10 0.89
Financial Concerns 3 0.81
Total 35 0.90


Table 5-11. Correlations and p values among family caregiver quality of life and the patient,
caregiver and disease characteristics.
Correlation with Quality of life


Table 5-12. Path coefficients for Hypothesis 1
Regression Coefficients
Predictors Unstandardized (SE) Standardized Significance R2 N
Demands 0.576 (0.132) 0.453 0.000 0.509 50
Hassles 1.433 (0.320) 0.467 0.000


Caregiver Characteristics:
Gender
Marital Status
Age
Employment Status
Social Support
Race
Education Level
Relationship to patient
Income
Patient Characteristics:
Gender
Age
Disease Characteristics:
Time since diagnosis
Number of medications


-0.021 (p=0.88)
0.201 (p=0.17)
0.004 (p=0.98)
0.022 (p=0.88)
0.257 (p=.07)
-0.179 (p=0.21)
0.085 (p=0.56)
0.219 (p=0.13)
0.118 (p=0.42)

0.287 (p=0.9)
-0.161 (p=0.35)

0.168 (p=0.34)
0 .033 (p=0.85)









Table 5-13. Path coefficients for Hypothesis 2
Regression Coefficients
Predictors Unstandardized (SE) Standardized Significance R2 N
Demands -0.580 (0. 117) -0.540 0.000 0.509 50
Hassles -0.833 (0.283) -0.321 0.005


Table 5-14. Path coefficients for Hypothesis 3
Regression Coefficients
Predictors Unstandardized (SE) Standardized Significance R2 N
Demands -0.233 (0.103) -0.217 0.027 0.713 50
Hassles 0.30 (0.250) 0.011 0.906
Stress -0.602 (0.095) -0.712 0.000


-0.217 (p = 0.027)


p = 0.453 (p < 0.001





p = 0.467 (p < 0.001


p = -0.712 (p < 0.001)


Figure 5-1. Summary of path model of family caregiver quality of life.









Table 5-15. Decomposition of the total associations of predictor variables with quality of li e
Predictor Variable Quality of Life
Medication Direct Effect--
Administration Hassles Indirect Effect via Appraisal of Stress -0.332*
Total Effect -0.332*

Demands of Caregiving Direct Effect -0.217
Indirect Effect via Appraisal of Stress -0.322*
Total Effect -0.540*

Appraisal of Stress Direct Effect -0.712

* p < 0.001
**p = 0.027









CHAPTER 6
DISCUSSION

Overview

This study had two main obj ectives. The first was to establish the reliability and validity

of using the Caregiver Quality of Life Index-Cancer to measure the quality of life in family

caregivers of children with cancer. The second obj ective was to then test a cognitive appraisal

model of stress in this same population of family caregivers in order to identify factors that

influence their quality of life. Specific focus was placed on how demands of caregiving, hassles

of medication administration and the appraisal of stress related to caregiving affect the family

caregiver' s quality of life. This chapter provides a discussion of the study findings, addresses

limitations of the study, suggests implications for health care providers and concludes with

recommendations for future research.

Discussion of Findings

Psychometric Testing of the CQOLC

Establishing reliability and validity in using the CQOLC to measure the quality of life of

family caregivers of children with cancer was ascertained through various techniques. The

results from the internal consistency reliability calculations suggested that the items in the

instrument were measuring not only their respective domains but together were measuring the

family caregiver quality of life construct. The overall items along with the two subscales all met

the apriori value of Cronbach' s alpha of greater than 0.70. While the results suggested high

reliability in the measures they were not so high as to suggest that the items were redundant in

what they were measuring.

Convergent validity was established between the CQOLC and the demands of caregiving,

hassles of medication administration and stress appraisal. All the results suggested significant










negative relationships between the family caregiver' s quality of life and the other three variables

measured. As the caregivers saw increases in their demands of caregiving, the hassles associated

with medication administration and their level of stress associated with caregiving, they saw a

decline in their perceived quality of life. The results from reliability and validity testing were

not unexpected based on the previous studies that have used or adapted the CQOLC and shown it

to be a reliable instrument (Weitzner, et al., 1991ab; Boling, Macrina, & Clancy, 2003;Rhee et

a., 2005).

Caregiver Quality of Life

Overall the family caregivers that participated in this study appeared to have a slightly

more positive perception of their quality of life. The median score for all caregivers was 3 1

which was just above the mid-point in the overall range of 0 to 52. Looking at the midpoint in

the range of possible scores shows that 28% of the caregivers had a neutral or negative

perception of their quality of life while the remaining 72% had a more positive leaning

perception.

The items that contributed most to a lower perceived quality of life were not surprising

when considering the patient population. Three of the four items that most contributed to lower

quality of life were all focused on the child receiving treatment or the caregivers' other children

and not on the caregivers themselves. These items included the statements, "I am worried about

the harmful effects of the treatments on my child/infant," "It upsets me to see my child/infant get

sicker," and "I worry about the effect of this illness on my other children." The only item

focused on the caregiver was their concern that they were under financial strain.

Parents will generally do what they can to put their children's needs before their own and

that is likely why the responses ended up as they did with 3 of the 4 most impactful items

focused on the child/children and not on the caregiver. One item that did not score higher, that









was somewhat surprising when the results were reviewed, was the minimal impact that the

statement "I am frightened my child/infant will die" had on the family caregiver quality of life.

A number of factors contributing to this could include the possibility that the caregivers did not

want to admit to such a negative thought. And that the caregivers had been properly educated

about the improved treatments for children and the rise in survival rates due to these improved

treatments.

Demands of Caregiving

Family caregivers of children with cancer face many demands in providing support to their

child, their family and themselves during their child's illness. Overall the caregivers who were

participants in this proj ect perceived their level of demands to be somewhat high with an average

score of 37.37 and a median score of 38.52 out of a possible score of 65. Assuming moderate

demand levels around 32 to 33 then almost 68% of the participants had a high leaning perception

of the amount of time and effort they put into the activities surrounding their child' s care.

The most demanding activity (combined effort and time commitment) reported,

providing emotional support for your child with cancer, was also the one activity focused

squarely on providing a level of care to the child. As with the highest ranking quality of life

items being focused on the patient, this item for demands was also the most patient centric.

These results mirror the original testing of the instrument by Keegan Wells and colleagues

(2002) when their test of the complete 28 item instrument revealed that their test population of

family caregivers of children with cancer also identified "providing emotional support for your

child with cancer" as the most demanding task they faced. It also turns out that providing

emotional support to the child with cancer ended up being the item that required the largest time

commitment for our study participants, with an average commitment of at least two to five hours









a week with 50% of the family caregivers saying they spent over five hours a week on this one

activity.

When it came to task difficulty in terms of completing the activity, the task that required

the most effort turned out to be planning activities for your child with cancer around the

treatment and illness. This was actually witnessed firsthand on numerous occasions while

conducting surveys, as the family caregivers were constantly working with the staff to identify

what activities the children could or could not do based on where they were in their treatment

cycle. Common activities like swimming in a pool or going back to school were questioned,

along with more complex activities like when to begin planning for a family vacation so as not to

interfere with the patient's treatment schedule.

Medication Administration Hassles

When it came to assessing the family caregivers hassles associated with medication

administration, the results were unexpected. It was anticipated based on previous research with

regard to medications and pain management for children with cancer that in fact dealing with

medications would be more difficult than the results suggested. Overall the level of hassles was

very low with an average score of just under 4 for a scale that ranged from a low of 0 for no

hassles to a high of 25 being considered very much a hassle.

Individual items were considered not a hassle at all by the maj ority of caregivers.

However, every item was viewed as at least a severe hassle, if not one of the worst of all hassles,

by one or more of the caregivers. Because the focus of these items was on the safety of

medication administration it was encouraging that overall most found these item not a hassle.

At least one caregiver found it a severe hassle to admit to their physician or others that a

mistake had been made in medication administration. Another caregiver considered knowing

when to hold, increase, decrease a dose or discontinue a medication to be one of the worst









hassles of all. Finally, four of the caregivers interviewed categorized recognizing adverse effects

of medications as a severe hassle or one of the worst of all hassles. All three of these examples

suggest a need to reevaluate the education that caregivers are being provided with regards to

medication administration.

Stress Appraisal

The caregivers interviewed perceived their level of stress to be moderate to low with

approximately 80% of the caregivers at or below the midpoint (39) of the overall range of

possible scores (13-65). These data suggest that while the caregivers did identify that there are

some significant demands and hassles that they face in their roles as family caregiver they were

not viewed as necessarily threatening to the family caregivers. Additionally, the results suggest

that the caregivers perceived their ability to handle these demands and hassles as satisfactory.

While overall the caregivers perceived little stress associated with their caregiving duties, a

closer look at the items, shows that in fact for every item measured there were family caregivers

that categorized the items as more true than false or very true. These suggest that some family

caregivers saw each item as being very stressful which in turn suggests that they were having

some difficulty handling some of the demands and/or hassles they were facing. Of the 13 items

measured, 25% of family caregivers indicated that four of the items were highly stressful. The

item indicating the most family caregivers stress was "I'm concerned that this situation will

cause financial hardship for me in the future."

Family Caregivers

The response rate for this study was just over 90% which is fairly high when compared

with other studies that looked at family caregivers of pediatric patients (Fedewa & Oberst, 1996;

Yamazaki, Sokejima, Mizoue, Eboshida & Fukuhara, 2005) both of which had response rates of

around 60%. While it was suggested by health care providers working within the Pediatric









Oncology Department at Shands UF that a high response rate could be expected, one this high

was not anticipated. A number of factors likely contributed to such a high response rate.

The first considered was that all the surveys were filled out by the family caregivers while

their child was receiving treatment. No surveys were sent home with the caregivers, so there was

no chance of them forgetting to either fill out the survey or to return it once they completed it.

Another factor that helped contribute to the response rate was the support of the study by

the nursing staff working in the infusion room and by the lead nurse in particular along with the

child life specialist that worked with the families. Often they informed the family caregivers

about the fact that we were there looking for individuals to complete surveys for this proj ect and

by the time the family caregivers were approached to see if they wanted to participate in the

study they were already versed on the proj ect and ready to participate. It should be noted that

not all caregivers approached had been versed by any member of the staff so that was not a sole

reason for participation.

Theoretical Framework

The underlying assumption for the cognitive appraisal model of stress used in this study

was that as the family caregivers dealt with both the demands of caregiving and the hassles of

medication administration they would periodically assess their situation and how they were

responding to it. With this assessment they would then adapt how they were reacting to the

situation and then ultimately this assessment would manifest into how they perceived their

quality of life to be.

While the fully mediated model that was hypothesized was not realized, the results of the

study still offered valuable insight into how the caregivers are affected by the roles they assume

during their child's care and how health care professionals could use this information to improve

the lives of both the patients and their family caregivers.









The total effect of administering the medications to the patient on family caregiver quality

of life was fully mediated through stress appraisal. The influence of the demands of caregiving

had the maj ority of its influence on family caregiver quality of life mediated through stress

appraisal with some minor direct influence on family caregiver quality of life. As predicted,

stress appraisal of the caregiving situation had the most influence on family caregiver quality of

life.

Looking at the results, the findings suggest a number of things. Health care professionals

need to be aware of the rising stress that family caregivers may be experiencing during their

child's treatment. This rise in stress is an indication that the demands of the caregiving role

and/or the administration of the patient' s medications is beginning to overwhelm the family

caregivers. By catching the increase in distress the family caregivers are experiencing early on,

health care professionals can more closely work with the families to identify what factors are

causing the most stress and to either eliminate them from the family caregivers functions or

provide them with education to reduce their stress. Thereby making them more beneficial

members of the child' s health care team.

Because of the influence of the demands of caregiving on the caregiver' s quality of life it

behooves health care professionals to follow-up with the family caregivers about how they are

handling certain demands. While this study identified some of the more demanding tasks the

family caregivers are dealing with in terms of time and effort (providing emotional support for

the child with cancer, planning activities for the child with cancer and comforting the child

through pain) future studies may help to more closely pinpoint the activities that continue to be

the most demanding overall.









Understanding which tasks are the most demanding for caregivers will afford health care

professionals the opportunity to provide educational materials to the family caregivers as soon as

their child enters into the treatment cycle to better prepare them for the role they will assume. It

also gives the health care professionals areas to follow-up with the family caregivers on a

continual basis to see how they are handling tasks to make sure they are not being negatively

impacted to the point that they no longer effective members of the child' s health care team.

Study Limitations

While this study provides some valuable information about the effect that caregiving has

on the family caregivers of children with cancer the study also has some limitations that need to

be taken into account when reviewing the results.

Overall, this study lacks generalizability to other caregivers of other children with cancer

based on the family caregivers that filled out surveys. The protocol for this project focused only

on family caregivers of children being treated in the infusion room of the Shands Medical Plaza.

This specific focus limited the different types of cancer that the patients had and also limited the

primary treatment strategy to chemotherapy. In turn this could have had an effect on what types

of demands, hassles and stresses these family caregivers were facing and then ultimately how

they impacted their quality of life.

Another limitation to consider is that the analysis implies that there is causality among the

variables. While the results of the analysis suggest that the data fit the cognitive appraisal model

of stress it is important to understand that the use of path analysis does not establish true

causality among the variables.

A final limitation to consider is the fact that the items used to measure the primary

variables of interest were all subsections of their complete instruments. The impact of this

limitation is likely greatest on the measurement of quality of life. Only items making up two of









the four factors from the instrument were used and additionally other items from the instrument

that did not fall into one of the four factors were also not used. While the results reflect some

level of quality of life measurement they do not fully measure quality of life as Weitzner had

intended and so the scores may not be a true reflection of the quality of life of the family

caregivers that participated in this study.

Implications for Health Care Providers

While this study had some specific research oriented goals it also had some "soft" goals

that were not included in the actual obj ectives of the study. All these "soft" or unmentioned

goals had to do with improving the care that both the patients and family caregivers were

receiving from all the health care team members that touch them during their visits to the cancer

center.

First and foremost is the hope that other health care providers will begin to see the impact

that the family caregivers have on the health care system and the need to follow the

recommendation of the World Health Organization to treat not only the patient but the family

caregiver as well (and the whole family unit for that matter). The family caregivers are a

valuable asset that needs to be relied upon and therefore cared for as well.

Health care providers that can take the time to listen to the family caregivers and identify

what areas the family caregivers are comfortable or good at handling are areas that the health

care providers can ask them to focus on more specifically. The areas that the family caregivers

are not comfortable handling are areas that the health care providers can remove from their plate

of responsibilities or are areas that the health care providers can offer resources to increase the

family caregivers ability to comfortably handle these situations.

The Einal area for health care providers to consider is asking all caregivers to fi11 out on a

regular basis an instrument similar to the one used in this study to give the family caregivers the









chance to voice their thoughts and feelings. The instrument took approximately 20 minutes for

each family caregiver to complete and can give the health care providers insight into the impact

of the roles on the family caregivers. Tracking results over time can help health care providers

identify areas that need to be focused on before they the family caregiver is overwhelmed to the

point where they are no longer a valuable asset to the health care team.

Future Research

This study lends itself to numerous future research proj ects. The first such proj ect would

be to conduct a series of roundtable discussions or one-on-one qualitative interviews with the

family caregivers to make sure that the current instrument measures all the areas that the family

caregivers feel are most important to them. While the instrument was reviewed for content

validity, the review did not include any actual family caregivers.

Future proj ects could be expansion of studies to others areas within the Shands UF

network. These studies could capture family caregivers of children with cancer over multiple

cancer types, receiving different primary treatments aside from chemotherapy- and to include

those that have yet to start outpatient treatment or have finished their outpatient care but are still

being seen for follow-up.

Another study to consider that could evolve from this proj ect is a multi-site study that

involves other facilities within the Children's Oncology Group (COG) network both here in

Florida and outside the state. Expanding the study to additional sites will help to improve not

only the amount and depth of information but the overall generalizability of the results. This

would ultimately give health care providers a way to anticipate the needs of family caregivers in

advance so that they can be addressed more efficiently and allow the family caregivers to

continue to be active members of the health care team rather than passive bystanders.









Finally it makes sense to consider a longitudinal study to follow family caregivers during

their child's treatment. This study would offer a number of benefits including understanding

how the family caregiver quality of life changes over the course of treatment and how their

perceptions of the demands, hassles and stresses associated with caregiving change over time.

This study would also allow for an analysis of how responsive to change the quality of life

instrument and other instruments in use are over time as none have been tested in this population

of caregivers over an extended period of time.















APPENDIX A
FAMILY CAREGIVER QUALITY OF LIFE AND THE IMPACT OF THE CAREGIVING
ROLE QUESTIONNAIRE






ID #


Family Caregiver
Quality of Life and the
Impact of the
Caregiving Role







yHealth Care Admms n
Coilelee of Pharmacy
University of Florida.













ID #



5&~~~~~~~~~~~srfin 1
Below is a list of statements that other parents of ill ch ildren have said are important. By circling one number
per line, please indicate how true each statement has been for you in the past 7 days.


Notatall A little bit S;mewhat t a bit Very much


During the past 7 days:
1. I am frightened my childfinfant will die
0 1f 2 3 4

2. My level of stress and wrnies has increased
0 1f 2 3 4

S3. I feel sad

0 1 2 3 4

4. I feel guilty
0 1t 2 3 4
5. I feel fnrstrated

0 1t 2 3 4

B. I feel nervous

0 1 2 3 4

7. I worry about the effect of this illness on my other children
0 1 2 3 4

8. I am worried about the harmful effiecs of the treatments on my chikdinfanrt
0 1 2 3 4

9~ It upsets me to see my childlinfant get sicker
0 1 2 3 4

10 lo am disouraged aboutthefuture
0 1 2 3 4

11i. I am under financial strain

8 1 2 3 4

12l I am caemed bainrab~out n rance vrg
0 12 3 4


0 1 2 3 4




IRB# 191-2006














105













ID #

Sefiakn 2
The purpose of this section is to collect demographic data on yourself. Please answer the questions
to the best of your ability by either choosing the most appropriate response or by filling in the blank.
Additional information about your child and your child's condition will be pulled from their patient
chart.


1i. Gender. ......... ........... ..................... Male
Female


2. Age in years ......................._._ ....._. (years)


3. Marital Status.................. .............. Married
Not Married


14. Work Status. .. ..~..~....~....~.. ....... .



5Presence of srcial support (Family
or friends assisting wvith caregiving
duties on a constant basis] .................... ...



S6. Race................... .......... .. ............ ...


PatrtFull Timle
Unemployed~


Yes
No


Whtite/Caucasiarn
Black (non-Hispan c)
HispanicLatinoi
Native American
Asian/Pacific Islander
Refused


Section 2 continued next page>>>



IRB# 191-2006












ID #


7.What is the highest level of school
you have cornpleted?.......................... .....










8. Wat is your relationship to the patients...................




9 Whrat was your approximate househcold
income last year?..................... .............. ..


Grade School
Sorne High School
High School
Sorne College
College Degree__
Sorne Graduate Sc 00l
Graduate School
Refused


Parent
Grandparentt
Other



Under 614,999~
$1i5,f000-524,999
$25,0DD-534,999
$35,000-549,999
$50,000-574,999
$75,000-599,999
$100),000-5149 399
$150,000-51 99,999~
Over 52D00.00
Refused


Priv~at In~surance
Govemment Insurance
(Meldicalo~lledicaire]
Personal Finances


10. Pnrnary source of medical expense coverage?.....


IRB#1 1 91-2006















































3. Providing emotional support for the extended family (examples include: grandparents, aunts, uncles,
friends, etc)


SSaction 3
Parrents/Guardians put time and effort i nto taking care of their child with cancer. We want to better
understand how much time and effort certain care-giving tasks require. Please indicate below the
amount of time and effort during the prast week that these tasks have required of you.

1. Providing emotional support for your child with cancer.

Tim~e Effort/Dlifficult
> 5 hours/wreek _A great deal
>2-5 hours/week Quite a lot
1-2 hrours/wreek Moderate
< 1 hourtweek A small amount
Did not do None


2. Providing emotional support for other children in the family


Trmle
> 5hours/week
>2-5 hours/week
1-2 horurs/w~eek
< 1 hourtweek
Did not do


~Efort/Difficulty
_A great deal
Quite a lot
Moderate
A small amoaunt
None


Time
> 5 hoursweek
>2-5 hours/wenek
1-2 ho~urs/week
< 1hourweek
Did not do


EL~fforLatDdfiulty
_A great deasl
Quite a lot
Moderate
A small anwunt
None


4. Providing emotional sUPPort for your spoulse/partner.


Time
> 5 hour/we
>-2-5 hours/week
1-2 horurs/wueek
< 1 hourrweek
Did not do


Effort/Dlifficulty~
_A great deal
Quite a lot
Moderate
A small amolunt
Naen


Section 3 continued next page>>>


IRB# 191g~-2006








































Planning activities for you child with cancer around the treatment and illness (examples include: school
playtime, rest, things for thea child to do, others).

Tisne Effort/Difficatty
>5 hours/week _A great deal
>-2-5 hours/week Quite a lot
1-2 holurstweek Moderate
< 1 horlweek A small amount
Did not do None


Planning activitiies for your family around treatment and illness (examples inrcludke: recreanron~ vacation,
school functions, o~ther).


113#


Meeting your own emotional support needs.

Time
> 5hourswe~ek
>2-5 hourswek
1-2 hours/wueek
< 1hour/we~ek
Did not do


Effort/Diffien~tl
A great deal
Quite a lot
Moderate
A small annount
None


Comforting your child ~through the pain of the cancer and its treatment (examples include: procedures,
moutfh sores, bone pain, etc.).


Time
> 5 hur/week
>2-5 hours/wreek
1-2 holuralweek
< 1hourtwek
Did not do


Effort/Diffica~tt
_A great deal
Quite a lot
Moderate
A small arnount
None


Three
S5 hours/week
>2-5 hours/week
1-2 h~ourstwreek
< 1 ho3ur/wek
Did nort do


EffrortDifficulty
A great deal
Quite a lot
Moderate
A small amorunt
None


Section 3 continued next page>>>


IRB# 191-2000















ID #

9. Communlcaring information about cancer to schools, day care, babysitters, extended family and friends.

Timerc Efrfort/ifficftty
> 5 hourxsweek _A great deal
>2-5 hours/week Quite a lot
1-2 hourstweek Moderate
< 1 hourt~ee-k A small amount
Did not do None


10. Watching for and reporting your child s physical syrmptoms and medical condition to the medical team.

Time EfRfortDifficulty
> 5 houlrstweek _A great deal
>2-5 hours/wreekt Quite a lot
1-2 holurstwreek Moderate
< 1 hourtwevek A small amount
Did not do None


11. Getting information on your child's illness and the treatment exampless include: Library, medical tearn,
community agencies, Irintrernet

Time Effort/Difficulty
> 5 houlrstweek _A great deal
>-2-5 hours/week Quite a lot
1-2 holurstwreek Moderate
< 1 hour/week A small amount
Did not do None


S12. Taking care of discipline andlor behavior problems of the child with cancer (crying, irritability, moodiness).

Time Efo~lffo/Dficulty
> 5 hourstweek A great deal
>2-5 hours/weeke Quite a lot
1-2 hours/week Maoderate
< 1 horlurtek A small arnount
Did not do None


S13. Taking care of finances, bills, and forms related to the child's illness.

Time Eff~ort/Difficulty
> 5 hourstwreek _A great deal
>2-5 hours/week Quite a lot
1-2 hourstweek M~oderate
< 1 hour/week A small amount
Did not do None


IRB#d 191-2006












ID #

:Section 4
INTRODUCTION: Hassles are minor daily irritants. Wve are interested in knowing which of the following
tasks associated with managing mediccation~s for your child are potential hassles for your and how much of a
hassle they are to you.

DIRECTION(S: For leach of the following iterns circle the nrumber that represents the intensity of the hassle
that you experience. The faces may help you decide which number to pick. For example, if the item is not a
hasl or does not apply to your situation, circle 0. If the itern is a mild hassle, circle the number 2. Ifthe
hassle is one of the worst of all hassles. circle the number 5.





Not a Haraly a A mild A moderate A severe One of the
Hassle hassle at hassle hassle h assle Iworst of all


01 2 3 4 5


1. Admitting to the physician or others that I made a mistake


2. Knowing when to hold, increase, decrease a dose or discontinue the medication

0 1 21 3 4
3. Understanding when medications can be crushed, mixed, dissolved, etc.


4. recognlIln3 adverse !Iraa} side effe~cts

0 1
5. Knlowing how to give medication safely


IRB#Y 191-200















ID #

SectionN 3
Each of the statements below represents a feeling, breliief, or attitude that someone like yo urself might
have about the illness of a child and about your role of providing the care and support needed by
your child. We refer to this care and support as "Lcaregiving",

Directions:
Please think about how you have felt about your own caregiving situaiion during the past week. We
would like to know how true each statement is of your own thoughts and feelings.

Read the following true or false choices. Use these choices to answer each of the statements about
caregivi ng:



Very TRUE 5 You feel that way most of the time
More TRUE 4 You feel that way much of the time
Eplually TRUE 3 You fell that way some of he time and the opposite way some of the
and FALSE time
Mobre FALSE
thanTRUE2 You fell that way onlly sonerdlnes or once in a while
VERY FALSE 1 You never fell that wray or rarely feel that way

SThere are no right or wrong answers.

SWe are aware that your feelings about the illness situation and treatment will fluctuate a8nd change
From day to day and week to week. Read the following statements. Circle the answer that is closest
jto how you are feeling now and have been feeling over the past week (`7 days).

EQUALLY
VERY IVORE FALSE MO)RE TRUE VERY
FALSE than TRUE TREad than FALSE TRUE

1I. I feel things are going to get12345
worse for me.
2. I haven t been doing very well 1 2 3 4 5
since this situation started.
3. I feel a sense of loss at not being
1 2 3 4 5
able to meet all my responsibilities.
4. I worry that I'll have to give up a 1 2 3 4 5
lot of things in the future.
5. I'rn afraid that in thMe future I won t
have the energy and endukrance I 2 3 4 5
have now.
6. I feel a loss because it seems like
there's no longer anything I can do
1 2 3 4 5
that makes a difference in how the
person needing care feels.


Section 5 continued next page>>>




IRBW 1 91-2006












ID #



We are aware that your feelings about the illness situation and treatment will fluctuate and change
formn day to day and week to week. Read the following sftatements. Circle the answer that is closest
to how you are feeling now and have been feeling over the past week (7 days).


VERY MORE FALSE EQAL VOE VERY
TRUE and TRUE than
FALSE than TRUE FLE ALE TRUE

7. This situation threatens to over-
1 2 3 4 5
whelm me.

8. I'm afraid my own physical health 1 2 3 4 5
will be-gin to suffer

9. I worry that in the future I will be 1 2 3 4 5
less able to do things I like to do.
10. I worry thatf I won t be able to
help the person needing my care in 1 2 3 4 5
the futur~e.

11. I worry that my emotional health 1 2 3 4 5
will begin to suffer.

12. I'm concerned that this situations
will cause financial hardship for rne 1 2 3 4 5
in the future

13. I'm not sure I caun handle this12345
situation in the future.


IRB# 191-2006




























Inf~ormed~ ConIsent to Participate in Research
andl Anthori:atioln for Collection, (/se, and
Disclosure ofProtected Health Information

University of Plorida
B~ealth Center
Iar~nstudnal R~eview Board
APPROVED FOR1588s

Prn/micrpllp~l T~nola~lraa


You are being asked to take part in a research study. This form provides you with information
about the study and ieeks your aluthorwizain fo~r the collection, use and dis~closure of your and your
child's protected health information necessary for the study. The Principal Investigator (the person
in charge of this research) or a representative of the Principal Investigator will also describe this
study to you and answer all of your questions. Your participation is entirely voluntary. BEfreln )ou
decide whether or not to take part, read the information below and aik rlurtir ns abut a nyhing
you do not understand. If you choose not to participate in this stud, you will not be penalized or
lose any benefits to which you or your child would otherwise be entitled.


1. Name of Parriipanl (''StudS bubjecl")




2. Ttle ofRessearch Study

Family Ca regi\ er Quality of Life in a Pediatric Oncology Sen ing

3. Prinelpal Investigator and Telephone Numbher~s)

Michael Mueller
352-318-1147


4. Source ofFunding or Other Material Support

University of Florida


APPENDIX B
CONSENT FORM FOR STUDY PARTICIPANTS




IR# 91-200~6


191 2006 I 04-26-06 / Page 1 of 8














5. What is the purpose of this research study?


To idernuly v1~I ftrs lh3t Influence family caicre er cualily of life in a pediatric oncology
setting. Primary factors of interest include the demlandsr arslxocitd w~iith czegiving haisles
ajjlociated uidl nunaging the patient's medications and stress related :o Ihe c~negiving rulcl


Ii. What will be done if you take part in this research study?

Participants will be asked to fill oul a questionnaure addresing caregi ler qual iry of ifet,
demands of carrgiving, hjrles asso iatd with medliatioln management and stres related to
categiving as well as information about themselves, their child and their child's illness.


If you have any questions now or or an) lime duri ng! Ihe std). ) au ma y comesl lhe Prnipal
Inve-uplo~l lr hate m p3 ofthis form.

7. If you choose to participate in this study, how long will you be expected to parldlpate In
the research?

Participants will only fill out the questionnaire and then be done with the research. It should
take about 45 minutes to complete the questionnire.


8. How many people are expected to participate in this research?




9. What are the possible discomforts and risks?


No risks are expected to arise from this particular stuld) Family caregivers may feel some
emotional discomfort in sharing their feelings about their experience of caring for their child.
They may also feel unomorabe being the focus of attention when it is their child that many
will feel deserves all the attention.

Participation in more than one research study or project may further increase the risks to you.
Please inform the Principal Inrestiglaor I lted In r: 3 of this consent form) or the person
rer iewing this c~nsent with you before enrolling in this or any. mother a~irseh Itudy or
project.

If you wish to discuss the information above orany discomforts you may experience, you may
ask questions now or call the Principal Investigator listed on the fronr pge~ of thil form.






191 2006 / 04-26-06 / Page 2 of 8














10a. What are the possible benefits ro y ou?

There are no specific benefits to you or your child at this time.


10b. What are the possible benefits to others?

There are no immediate benefits to others


11. If you choose to take part in this: research study, will It cost you anything?'

There are no~ ~oiSs abSsiatedld with participating in this study.


12. Will you receive compensation for taking part in this research study?

Yes. One (1) $20 Publix gift card.


13. What if you are injured because of the study?

If you experience an injury that is dir~cdly caused by this study, only professional consultative
care that you receive at the University of Florida Health Science Center will be provided
without charge. However, hospital expenses will have to be paid by you or your insurance
provider. No other compensation is offered. Please contact the Principal investigator listed in
Item 3 of this form if you experience an injury or have any questions about any discomfbrt
that you experiencer wihile participaring in this study.


14, What other options or treatments are available if you do not want to be in this study?

There is the option to not participate in the study.


15a. Can you withdraw from this research study?

You are free to withdraw your consent and to, Stop participating in this research istudy at any
time. If you do withdraw your consent, there will be no enally. and ) olu willi not lolre any
benefits you are entitled to.

If you decide to n irhdraw your consent to participate in -hii research aludy for any reason, you
should let the investigator present know.

If you have any quesl ion r regarding )our righlj as a arpsarchl subjectl. you may phone the
Institutional Review Board (IRBI police a (352) 8146-1494.




191 2006 / 04-26-06 / Page 3 of 8















15b. If you withdraw, can information about you still be used and/or collected?

You or your child's data will not be used if you withdraw from the study.


15c. Can the Principal Insestigator withdraw you from this research study?

Individuals that meet the inclusion criteria outlined by the primary investigator will be the
only ones allowed to participate in this study so there is no reason that anyone who starts the
study will be removed.


16., If you agree to participate in this research study, the Principal Inrestigaror will create,
collect, and use private information about you, your child and your chikl's health. Once
this information is collected, how wvill it be keps secrer (confidenlisly in order to protect
your privacy?

Information collected about you and your child and your child's health (called protected health
information), will be stored in locked filing cabinets or in computers with sec-urity passwords.
Only certain people have the legal right to review these research records, and they wrill protect
the secrecy confidentialityt) of these records as much as the law al lowr s These people include
the researchers for this study,. certain IUniserjity of Flnda officmls, the hospital or clinic (if
any) involved in this research, and die Institutional Review Board (IRB; an IRB is a group of
people who are responmible for looking after the rights and welfare of people taking part in
research). Otherwise your research records will not be released without > our permission
unless required bry law or a court order.

If you participate in this research study, the researchers will collect, use, and share your and
your child's protected health information with others. Items 17 to 26 below describe how this
information will be collected. used, and shared.


17. If you agree to participate in this research study, what protected health information
about you and your child muay be collected, used and shared with others?

Your child's protected health information may be collected, used, and shared with others to
determine if you can participate in the study, and then as part of your part ici pation in the study.
This information can be gathlered from you or your child's curn health records. More
specifically, the follow ing information may be collected, used, and shared with others:

Child's cancer type
Time since child's diagnosis
Trealmenr strategy for yourchild
Primary type of treatment
Child's age at diagnosis
Child's cancer stae



191 2006 / 04-26-06 / Page 4 of 8














Age of your child
a Number of medications your childI isurrentl) taking

We will also be collecting: some protected health information from you as rwell including:
Age
*Work sttu
Marriage status
*Race
Gender
Highest level of schooling
*Income
Insurance

If you agree to be in this research study, it is possible that some of the information collected
might be copied into a "limited data set" to be used for other research purposes. If so, the
limited data set may only include information that does not directly identify you or your
child. For example, the limited data set cannot include your name, address, telephn
number, social security number, or any other phoctogpraphs, numbers, codes, or so forth that
link you to the information in the limited data set. If used, limited data sets have legal
agreements to protect your idett and confidetality and privacy.


18. For what study-related purposes wrill your and your child's protected health information
be collected, used, and shared with others

Your and your child's protected health information may be collected, used, and shared with
others to make sure you are eligible to participate in the research, through your participation in
the research, and to evaluate the results ofthe research study. Mor specifically, your and your
child's protected health information may be collected, used, and shared with others for the
following study-related purpose(s):

*To identi fy how the factors collected inlunc your ouramll quality of life.

19. Who will be allowed to collect, use, and share your and your child's protected health
information?

Your and your child "s protected health information may be collected, used, and shared with
others by:

-the study Principal Inte~stigalor Michael M~ueller and his sub?-inrestigators
-other professionals at the University of Florida or Shands Hospital that provide study-
related treatment or pro~cedures
Sthe University of flonda Institutional Review Board







191 200 / 04-26-06 / Page 5 of 8














20. Once collected or used, who may your and your child's protected health information b
shared with?

Your and your child's protected health informarion may be shared with:

lhe wudiy sponsor the University of Florida
-United States and foreign governmental agencies who are responsible for overseeing
research, such as the Food and Drug Administration, the Department of Health and
Human Services, and the Office ofHuman Research Protections
-Government agencies who are responsible for overseeing public health1 concerns such
as the Centers for Disease Control and Federal, State and local health departments




21, If you agree to participate in this research, how long w ill your and your child's protected
health information be used and shared with others?

Your and your child's protected health information will be collected until the end of Lhe study
This information will be used and disclosed forever since it will be stored for an indefinite
period lf time in a secure database. If you withdraw your permission for the use and sharing
of your and your child'i proltected health inforation, then your and lour child's information
will be removed from the database.


22. Why are you being asked to allow the collection, use and sharing of your and your ch~d's
protected health information?

Under a new Federal Law, researchers cannot collect, use, or share with others any of your and
your child's protected health information for research unless you allow them to by signing Ihis
consent and authorization,


23. Are your required to sign this consent and authorization and allow the researchers to
collect, use and share wilth others your sad your chIld's protected health information?

No, and your refusal to sign n iII nol 31rfect you or your cluUld'S treatment, payment, enrollment,
or eligibility for any beznetits outside this research study. How ear~r you cannot participate! in
this research unless you allow the collcranon, use and sharing of your child's protected health
irrnfror'matw A* sig~ninglj this consent/authorization,


24. Can you review or copy your and your child's protected health information that has been
collected, used or shared with others under this authorization?

You have the right to review and copy your child's protected health information. However,
you will not be allowed to do so until after the study is finished.



191 2006 / 04-265-06 / Page 6 of 8





25. Is there a risk that your and your child's protected health information could be given to
others beyond your authorization?

Yes. There is a risk E'hat information received by authorized persons could be given to others
beyond your authorization and not covered b) the law. However, this risk is minimal because
all data collected will be housed in a password protected computer that only the Primary
Investigator has access to. ALdditironally once data is entered into the data set there will be no
identifiable fields included in the data set that would allow any individual to ascertain whose
data -hey were looking at.


26. Can you revoke (cancel) your authorization for collection, use and sharing with others of
your and your child's protected health information?

Yes. You can revoke lour authorizalion as any time before, during, or after your participation
in the r-esearch. If you revoke, no new information will be collected about you or your child.
However, information that was already collected may still be used and shared with others if the
researchers have relied on it to complete and protect the validity of the research. You can
revoke your authorization by giving a written request with your signature on it to the Principal
Inves~tigalor.


27T. How will the rersearcher~s benefit from your being in this study?

In general, presenting research results helps the career of a scientist. Th~eirefr, the Principal
Imestigealor may benefit if the results of this study are presented at scientific meetings or in
scientific journals. If presented in results, individual data will not be presented. Instead
aggregate data such as average scores for all subjects will be reported.





















191 2006 / 04-26-06 / Page 7 of 8














28. Signatures


As a representative of this study, I have explained to the participanr the purpose, the
procedures, the pojssble benefits,. and the risks of this research study; the alternatives to being
in the rrudy; and how the participant's protected health information # Ill be collected, used, and
shared with others:




Signature of Person Obtaining Consent and Authorization Date



You have been informed about this study's purpose, procedures, possible benefits, and risks;
the alternati res to being in the study; and how your child's protected health information will be
collected, used and shared with others. You have received a copy of this Form. You have
been given the opportunity to ask questions before you sign, and you have been told Ihar > ou
can ask other questions at any time.

You voluntarily agree to participate in this study. You hereby authorize the collec-tion, use and
sharing of your child's protectedi health information as described in sections 17-26 above. By
signing this form, you are not wait ing any of your legal rights.


Date


Signature of Person Conienting and Authoring ~


191 2006 / 04-26-06 / Page 8 of 8










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BIOGRAPHICAL SKETCH

Michael, a Florida native, attended high school at Tarpon Springs High School in Tarpon

Springs, Florida. Following high school, he attended the University of Florida, where, in 1995,

he earned his Bachelor of Science degree in psychology. Michael returned to the University of

Florida in the fall of 2001 where he j oined the Department of Pharmaceutical Outcomes and

Policy as full time student. As a graduate student, Michael received a University of Florida

Alumni Fellowship, an AACP Wal-Mart Scholarship and was elected the Teaching Assistant of

the Year by the faculty of the Department of Pharmaceutical Outcomes and Policy.





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FAMILY CAREGIVER QUALITY OF LIFE IN A PEDIATRIC ONCOLOGY SETTING By MICHAEL JOHN MUELLER 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 2008 1

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2008 Michael John Mueller 2

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This dissertation is dedicated to my beautiful daughter, Olivia Grace, and my loving wife, Brooke, who I love now, forever, always. 3

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ACKNOWLEDGMENTS I would like to thank my wife, Brooke fo r her unending love and undying support; she has been an inspiration to me since day one. I would also like to thank my family: my parents, Louis and Candy Mueller; my brother, Stephen; my older sister Tina and her family; as well as my younger sister, Sarah; for their love and support thr oughout this entire process. This could also not have been accomplished without the support of my in-laws, Joyce Conner Eary and John and Donna Loud. For their assistance, I would like to thank the students, faculty and staff of the Pharmaceutical Outcomes and Policy Department. I would especially like to thank Drs. Richard Segal, David Brushwood, and John Graham-Pole fo r their advice and encouragement. Without the guidance of Dr. Carole Kimberlin, I would not have completed this great accomplishment for this I am deeply indebted to her. 4

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TABLE OF CONTENTS page ACKNOWLEDGMENTS ............................................................................................................... 4LIST OF TABLES ...........................................................................................................................8LIST OF FIGURES .......................................................................................................................10ABSTRACT ...................................................................................................................... .............111 INTRODUCTION ................................................................................................................ ..13Problem Statement ............................................................................................................. .....13Background .................................................................................................................... .........13Shifts in Health Care .......................................................................................................13Value of Caregiving ........................................................................................................14Pediatric Cancer Impact ..................................................................................................15Significance of the Study ........................................................................................................16Research Objectives ........................................................................................................... .....172 THEORETICAL FRAMEWORK ..........................................................................................18Introduction .................................................................................................................. ...........18Cognitive Appraisal Model of Stress ......................................................................................18Lazarus and Folkman Appraisal Model of Stress ............................................................19Modified Model of Stress ................................................................................................21Cognitive Appraisal of Stress Research .................................................................................24Cognitive Appraisal of Stre ss in Caregivers of Pedi atric Oncology Patients .........................31Research Questions ............................................................................................................ .....333 LITERATURE REVIEW .......................................................................................................36Cancer Caregiver Quality of Life Research ............................................................................36Quality of Life .................................................................................................................37Measuring Quality of Life ...............................................................................................38Global instruments ...................................................................................................38Generic instruments ..................................................................................................38Disease-Specific instruments ...................................................................................39Additional Study Characteristics .....................................................................................40Factors Associated with Caregiver Quality of Life .........................................................41Patient characteristics ...............................................................................................41Disease related factors ..............................................................................................42Caregiver characteristics ..........................................................................................43Limitations in the Current Research ................................................................................44Caregiver Quality of Life in a Pediatric Oncology Setting ....................................................46 5

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4 METHODOLOGY ................................................................................................................. 51Introduction .................................................................................................................. ...........51Caregiver Quality of Life Index Cancer ..............................................................................51Family Caregiver Quality of Life ...........................................................................................56The Care of My Child With Cancer ................................................................................56The Family Caregiver Medication Administration Hassles Scale ..................................58Appraisal of Caregiving Scale .........................................................................................59Study Constructs Dependent and Independent Variables ....................................................61Family Caregiver Burden ................................................................................................61Family caregiver demands .......................................................................................62Medication administration hassles ...........................................................................62Stress Appraisal ...............................................................................................................62Family Caregiver Quality of Life ....................................................................................63Subjects ...................................................................................................................... .............63Procedures .................................................................................................................... ...........63Statistical Analysis .......................................................................................................... ........64Internal Consistency Reliability ......................................................................................65Convergent Validity ........................................................................................................65Path Analysis and Mediation Testing ..............................................................................65Tests of association ..................................................................................................65Path analysis .............................................................................................................66Sample Size ............................................................................................................................685 RESULTS ..................................................................................................................... ..........71Family Caregiver Demographics ............................................................................................71Patient and Disease Characteristics ........................................................................................72Cognitive Appraisal of St ress Model Components ................................................................73Family Caregiver Quality of Life ....................................................................................73Demands of Caregiving ...................................................................................................75Hassles of Medication Administration ............................................................................77Appraisal of Caregiving ..................................................................................................77Psychometric Properties of the CQOLC .................................................................................79Internal Consistency Reliability ......................................................................................79Convergent Validation .....................................................................................................79Evaluation of the Cognitive Appraisal of Stress Model .........................................................80Evaluating CQOLC Correlations ....................................................................................80Stress Regressed on Demands a nd Hassles Hypothesis 1 ............................................80Quality of Life Regressed on Demands and Hassles Hypothesis 2 ..............................81Quality of Life Regressed on Demands, Hassles and Stress Hypothesis 3 ..................81Construction of the Final Model .............................................................................................82Summary of Results ................................................................................................................826 DISCUSSION .................................................................................................................. .......92Overview ...................................................................................................................... ...........92 6

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Discussion of Findings ........................................................................................................ ...92Psychometric Testing of the CQOLC ..............................................................................92Caregiver Quality of Life ................................................................................................93Demands of Caregiving ...................................................................................................94Medication Administ ration Hassles ................................................................................95Stress Appraisal ...............................................................................................................96Family Caregivers ...........................................................................................................96Theoretical Framework ...................................................................................................97Study Limitations ............................................................................................................. .......99Implications for Health Care Providers ................................................................................100Future Research ....................................................................................................................101APPENDIX A FAMILY CAREGIVER QUALITY OF LIFE AND THE IMPACT OF THE CAREGIVING ROLE QUE STIONNAIRE .........................................................................103B CONSENT FORM FOR STUDY PARTICIPANTS ...........................................................114LIST OF REFERENCES .............................................................................................................122BIOGRAPHICAL SKETCH .......................................................................................................126 7

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LIST OF TABLES Table page Table 3-1. Studies of quality of lif e of caregivers of cancer patients ............................................47Table 4-1. List of items from the original CQOLC that were amended to fit the target population of family caregivers of pediatric oncology patients. ........................................69Table 4-2. Study constructs and sources for data collection. ........................................................69Table 5-1. Family caregiver demographics ..................................................................................84Table 5-2 Patient and disease characteristics .................................................................................85Table 5-3. Caregiver perceptions on the prim ary components of the cognitive appraisal of stress model. .......................................................................................................................86Table 5-4. Mean, standard deviation, and median score for each item on the modified CQOLC. Higher scores suggest a lower quality of lif e. All items range from 0 to 4. .....86Table 5-5. Mean, standard deviation, and median score for the total demand score of each item ((effort time)1/2) on The Care of My Child With Cancer. Higher scores suggest higher demands. Item scores ranged from 1 to 5. ................................................87Table 5-6. Mean, standard deviation, and median score for the time component of each item on The Care of My Child With Cancer. Hi gher scores suggest higher demands. Item scores ranged from 1 to 5. ..................................................................................................87Table 5-7. Mean, standard deviation and median score for the effort/difficulty component of each item on The Care of My Child With Cancer. Higher scores suggest higher demands. Item scores ranged from 1 to 5. ........................................................................88Table 5-8. Mean, standard deviation and median for each item on Family Caregiver Medication Administrati on Hassles Scale. ........................................................................88Table 5-9. Mean, standard deviation and medi an score for each item on the Appraisal of Caregiving instrument. .......................................................................................................8 8Table 5-10. Cronbachs alpha resu lts for this study and the original instrument development and validation by Weitzner et al. .......................................................................................89Table 5-11. Correlations and p values among fam ily caregiver quality of life and the patient, caregiver and disease characteristics. ................................................................................89Table 5-12. Path coeffici ents for Hypothesis 1 .............................................................................89Table 5-13. Path coeffici ents for Hypothesis 2 .............................................................................90 8

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Table 5-14. Path coeffici ents for Hypothesis 3 .............................................................................90Table 5-15. Decomposition of the total associatio ns of predictor variab les with quality of life .......................................................................................................................... ............91 9

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LIST OF FIGURES Figure page Figure 2-1. Cognitive appraisal mo del of stress for caregivers of pediatric oncology patients ....34Figure 2-2. Exogenous antecedent variables in the model ...........................................................34Figure 2-3. Endogenous antecedent va riables added to the model. ..............................................35Figure 2-4. Mediator vari able (caregiver appraisa l) added to the model ......................................35Figure 4-1. Proposed model of fam ily caregiver quality of life ...................................................70Figure 5-1. Summary of path model of family caregiver quality of life. ......................................90 10

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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 FAMILY CAREGIVER QUALITY OF LIFE IN A PEDIATRIC ONCOLOGY SETTING By Michael John Mueller August 2008 Chair: Carole Kimberlin Major: Pharmaceutical Sciences Research in the field of family caregiver qua lity of life (QOL) is growing but few studies have addressed family caregivers of childre n with cancer and few have been guided by a theoretical framework. This research looked to examine what factors may influence QOL of family caregivers of children with cancer. Specific focus was placed on how demands of caregiving, hassles of patient medication administration and the apprai sal of caregiving stress affect the family caregivers QOL. The variables tested in the study were driven by a cognitive appraisal model of stress. Family caregivers filled out questionnaires that included subscales from (1)the Caregiver Quality of Life Index Cancer, (2) the Care of My Child With Cancer (demands), (3) the Family Caregiver Medication Administration Hassles Scale (hassles) and (4) the Appraisal of Caregiving Scale (stress). Demogr aphics were also collected on the caregivers, the patients and the patients disease state. The response rate was 90.91% (50 out of 55 who were told about the study). A 3-step multistage path analysis determined the path coefficients for the final model. The first regression showed that demands and hassles accounted for 51% of the variance in stress. 11

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12 The second regression showed dema nds and hassles accounted for 47% of the variance in family caregiver QOL. The final regression showed demands, hassles and stress accounted for 71% of the variance in family caregiver QOL with demand s and stress each contributing significantly. The final model was partially mediated. Hassles effect on QOL was fully mediated through stress. Demands had some mediation through stress along with a direct effect on QOL. Stress had a direct effect on QOL. Hassles have a negative in fluence on QOL mediated th rough the caregivers stress appraisal. Demands of caregiving and stress we re both found to have direct negative impacts on QOL. This questionnaire can be used to help he alth care professionals identify areas of stress impacting the family caregivers. It will then a llow for focused education or support that may be needed to help the family caregivers reduce their stress and make them an integral part of the patients health care team.

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CHAPTER 1 INTRODUCTION Problem Statement One of the most significant shifts in health car e in recent years has been the migration of care from the hospital setting to the home or am bulatory setting. A number of factors have contributed to this shift, including pressures by managed health care organizations to limit hospital days as well as improved treatment options that no longer require in-patient stays. With this shift out of the hospital and into the home or outpatient setting there generally comes a transfer of care for the patient from trained pr ofessionals to the family or guardian(s) of the patient, with one or more individu als taking on the role of the patient s primary family caregiver. This transfer of care can ofte n have a profound effect on a number of aspects of the family caregivers life including thei r overall quality of life. Research is growing in the field of family car egiver quality of life, but few studies have addressed the effects of caregiving on family careg ivers of children with cancer. The majority of studies have included adult patient populations with a major focus on Alzheimer and dementia patients. A theoretical foundation to help bri ng together the construc ts of the study into a meaningful conceptual framework has guided even fewer studies. This project looked at the quality of life of family caregivers of children with cancer and used a cognitive appraisal model of stress to identify how anteced ent and mediating variables combine to affect the family caregivers quality of life. Background Shifts in Health Care The shift in the care of patients from the hospi tal to the home has forced family caregivers to face tasks that many are ill prepared to ha ndle. Arno, Levine and Memmott (1999) noted that 13

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not only are caregivers unprepared for their new roles but most are never offered appropriate follow-up services, reevaluation of care arrangements or referral s to community services. The roles of the family caregiver can incl ude symptom management, administration of medications, equipment management, assistance with activities of daily living and acting as a patient advocate to name just a few (Laizner Yost, Barq & McCorkle, 1993; Schoenfelder, Swanson, Specht, Maas & Johnson, 2000; Given, Given & Kozachik, 2001; Aranda & HaymanWhite, 2001; Haley, 2003; Glajchen, 2004). Task s undertaken by family caregivers can be identified as either direct care or indirect care. Direct care encompasses tasks that are carried out with the patient directly while indirect care tasks are done on behalf of the patient by the family caregiver, such as paying bills (Given et al., 2001). The role of the family caregiver changes as the condition and treatment strategi es of the patient change. Family caregivers, along with assuming their new roles and undertaking these new tasks, must also deal with their usual daily life responsibilities as well. This collision of caregiving roles and daily life responsibilities can often have a detrimental effect on the family caregivers, affecting their quality of life in cluding their physical, social, fi nancial and psychological wellbeing (Edwards & Ung, 2002). Value of Caregiving Aside from the assistance that family caregivers offer to the patient they also bring relief to the health care system in terms of the freeing up of provider time and fina ncial constraints on the health care system that often accompany the tr eatment of chronic conditions. Neglecting the needs of the family caregiver and ignoring their quality of life ultimately affects the caregiver, the patient and the health care system. Because of this, treatment strategies need to address not only the concerns of the patient but those of the family caregiver as well. The World Health Organization has noted in their work on palliati ve care of cancer patient s that psychological 14

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support should be provided to both the patien t and the family (World Health Organization [WHO], 1990). The financial impact that family caregivers have on the medical field is difficult to assess. Arno and colleagues (1999) and Arno during a lecture on the economic value of informal caregivers (2002) attempted to pl ace a dollar figure on the value of informal caregiving. Midrange estimates suggested that there were approximately 27.3 million family caregivers (providing assistance to adult patie nts) in the United States duri ng the time of their analysis. Based on their calculations, they estimated that family caregivers provided the health care field with $257 million in free heal th care services. This was well above the estimates for professional care provided in the home setting ( $32 million) or in nursing home environments ($92 million). While these figures represent fam ily caregivers of adult patients, the impact of family caregivers of children with chronic conditi ons can be assumed to be as significant if not greater since children will often require more around the clock care compared to adult patients. Pediatric Cancer Impact Children (those under the age of 20) account for approximately 30% of the population in the United States (Ries, Percy & Bunin, 1999). Wh en it comes to children, cancer is the leading disease in terms of mortality ra tes. In children aged 1 to 14, cancer is the second leading cause of death behind accidents (American Cancer Society, 2002). Projections for 2007 suggest that approximately 10,000 children under age 15 will be diagnosed with cancer. Of those diagnosed near ly 80 percent will become long-term survivors of 5 years or more. This number has risen dram atically since before th e 1970s when the 5 year survival rate was below 50% (Ame rican Cancer Society, 2007). The majority of cancers found in children are a form of leukemia. Other cancers that children face include; brain tumors and neuroblastomas, bone cancers, lymphomas and kidney 15

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and liver cancers. While adult cancers have been attributed mostly to lifestyle factors, little is known about the cause of children cancers. The incidence for genders is fairly similar when looking at all cancers for children. Data indicate that one in every 300 boys will develop can cer while girls have an incidence rate of one in 333. When broken down by ethnic groups, the ra tes for white children are higher than all other races (Ries et al., 1999). The importance of the role that family caregiv ers provide to the heal th care community and their impact on the care of the patient is undeniab le. While the number of children afflicted with cancer is low compared to disease states affectin g adults, the need remains to provide them the best care possible, including car e by parents and other family me mbers. A desire to understand the needs of children with cancer and their fa mily caregivers provided the catalyst for the development and execution of this study. Significance of the Study There are a number of reasons why this study is needed and what contributions it will bring to the family caregiving a nd pediatric oncology communities. Th e first of these is to give the family caregivers of children with cancer a vo ice regarding what impact the fight for their childs health is having on their lives both physi cally and mentally. Research has shown how family caregivers of adults with Alzheimers, de mentia and other disease states are impacted by their roles; but there is little literature to paint the same pictur e for family caregivers of children, specifically those family caregivers of children with cancer. This study will begin to bring to the forefront the types of activities family careg ivers handle and struggle with by understanding the demands and hassles these caregivers face and how these impact the daily stress in their lives and their quality of life. 16

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17 Secondly this study provides a theoretically based look at th e impact that caregiving has on family caregivers who have not been studied by pr evious research. While a cognitive appraisal of stress model has been tested in adult patient populations, it has not been utilized in a pediatric setting. Thirdly this study adds a compone nt that has not been well studi ed in family caregivers the stress involved in managing medication therapy of the patient. The review of literature found that none of the studies identif ied contained a measure of me dication administration hassles included in this study, as a predictor of family caregiver quality of life. Research Objectives This research examined the quality of life of family caregivers of children diagnosed with cancer. To better understand the qual ity of life of family caregiver s of children with cancer and how their quality of life is influenced by various stressors, we established two primary objectives for this study. The first objective was to establish the validity and reliability of a quality of life instrument for use in a population of family caregivers of children with cancer. The second objective was to test a cognitive appraisal model of stress in the same population in order to identify factors that influence family caregiver quality of life. Specific focus will be on how demands of caregiving, hassles of medication administration and the ap praisal of stress related to caregiving affect the family ca regivers quality of life.

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CHAPTER 2 THEORETICAL FRAMEWORK Introduction The purpose of this chapter is to establish the theoretical framework used to better understand how the quality of life of family caregivers of children with cancer is influenced by selected factors. The first part of the chapter looks at how models of cognitive appraisal of stress have evolved over the years. The next section will be a review of studies that have used models of cognitive appraisal of stress as their foundation. The third sec tion of the chapter will provide in detail the model that was used in this study and the specific vari ables that were included in the model for measurement purposes. After describing the model used in this study, the final section outlines the five research questions that were es tablished in order to meet the two objectives of this study which were 1) to validate an instrument to measure the quality of life of family caregivers of children with cancer and 2) to iden tify factors that predict a caregivers overall quality of life based on a cognitive appraisal model of stress. Cognitive Appraisal Model of Stress The conceptual framework for this study was a cognitive appraisal model of stress. Origins of the model come from the combined works of Lazarus (1966), Lazarus and Folkman (1984), Lazarus (2000), Scott, Oberst and Dr opkin (1980) and finally the model proposed by Carey, Oberst, McCubbin and Hughes (1991). The various formulations of the Lazarus model posit that individuals (in the case of this study family caregivers) are constantly evaluating relationships with the environment with respect to implications for personal well-being (Lazarus, 2000). This evaluative process is the cognitive appraisal component of the model and it allows individuals to ascertain how well they have responded to environmental events, such as a cancer 18

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diagnosis. The cognitive appr aisal process is continuous a nd leads to an individuals psychological or physiological response to the environmental event. Lazarus and Folkman Appraisal Model of Stress The initial model developed by Lazarus (1966 ) and then revised by Lazarus and Folkman (1984) identified a set of antecedent variables that influence a person s appraisal of a given situation or event. These antecedent (or causa l) variables were broke n into two main sets; environmental and personal variables. Person variables are tied to an individuals values, their commitments and beliefs and what Lazarus and Folk man called an existential sense of control. Environmental variables focus on demands (situa tional), constraints, re sources, ambiguity of harm and imminence of harm. Together the e ffects of these person a nd environment variables have an influence on how an individual appraises an event or situation. Lazarus and Folkman identified appraisal as operating in a mediating fashion between the person/environment factors and the immediate and long-term effects that individuals experience. Lazarus defined appraisal as the evaluative product of appraising which itself was defined as the act of making an evaluation (2000) In their initial wo rk Lazarus and Folkman (1984) separated appraisals into primary and secondary appraisals. Primary appraising answers the question of wha t does this mean to me? Each person reacts differently to a particular situation and must decide whether or not it is necessary for them to react or respond to that situat ion or event. Lazarus identifie d that in order for a person to decide whether what is happening to them is rele vant or not they weigh it against their values, goal commitments, beliefs about self and world and situational intentions (2000). Of these values, beliefs, commitments and intentions, Lazarus saw goal commitments as the most influential. He noted that if there is no goal commitment, th ere is nothing of adaptational importance at stake in an encount er to arouse emotions (2000). 19

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The idea of goal commitments is a relevant c oncept that has significant meaning to family caregivers of pediatric patients fighting cancer or any other chr onic condition. Lazarus viewed goal commitments as the inner drive of a person to work hard at achieving a goal no matter the obstacles or adversity that indi vidual faced. This view of goal commitments, as doing whatever it takes, goes hand in hand with a parents need to protect their child or help them when in need, no matter the cost, both personall y and financially. While primary appraising answers the question of what does this mean to me, secondary appraising asks the questions of Do I need to re spond to this situation an d if so what can be done? This component of the cognitive appraisa l model of stress is focused on what can be done to handle what Lazarus called a troub led person-environment relationship (2000). Individuals must decide what c oping options are available to th em and at the same time also decide whether or not those options can be acted upon or whether there are social and/or intrapsychic constraints in place th at do not allow the individual to react to the situation/event. In his writings Lazarus was clear to point out that the designations of primary and secondary do not signify a level of increased im portance between the two types of appraising. Thus primary does not signify that it is more im portant than secondary. Together the two types of appraising allow for a complete understand ing of the situation th at will allow for the individual to cope with the situ ation in the most efficient manner possible. Lazarus spoke of an active interplay between the two appraisals. The appraising process that indi viduals go through leads to a reaction to, or appraisal of, the situation. Lazarus distinguished between appraising, which is the process of making an evaluation of an event/situation, and appraisal which is the resulting reaction born from the 20

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appraising process. In terms of appraisals there are three main classifications: benign, beneficial and stressful. Benign appraisals have no impact on the indi vidual as the event is viewed as neither positive nor negative. A positive reaction leads to a beneficial appraisal of the situation/event. Finally the reaction can be viewed in a negative connotation leading to what is termed a stressful appraisal. A stressful appraisal can itself fall into one of three classifications. The classifications are (1) harm or loss, (2) threat and (3) challenge Harm or loss corresponds to damage that has already been done. Threats signify that damage may occur but at the present it has not. Finally, challenges are obstacles or events that may be difficult to ov ercome but are not immediately viewed as impossible to surmount. Modified Model of Stress Following in the footsteps of Lazarus and other stress and coping researchers Scott, Oberst and Dropkin (1980) developed their own cognitive appr aisal model of stress. Their goal was to develop a theoretical framework to be used for studies within an acute care cancer center focused on both patients and caregivers (Sco tt et al., 1980). The model has similar components to that of the models by Lazarus (1966) and Lazarus and Fo lkman (1984) but has some major differences as well. One of the most important components of the Scott, Oberst, Dropkin (SOD) model that ties it to that of Lazarus and Folkma ns work is the underlying assumpti on that the entire process of stress-coping is an ever-changing process that is continually adjusting to the event or situation based on the individuals appr aising and coping. Backer et al (2000) point out additional similarities between the two theories and the major assumptions inferred by the researchers. They note that the works of Lazarus and Folkman a nd that of Scott et al. infer that the experience of stress is the result of a cognitive process and that this cognitive process leads to an assessment 21

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that the demands of a given situation or ev ent exceed current resources available to the individual and theref ore produce stress. A major difference in the models that Backer and colleagues (2000) identified has to do with an individuals perception of anxiety. They point out that in th e eyes of SOD model, anxiety is initially experienced by every individual and then transformed into more specific emotions following the appraisal of the situa tion/event while Lazarus and Folkman felt that anxiety was just one of many emo tions that individuals experience d after the appraisal process. To Lazarus and Folkman anxiety may or may no t occur while Scott and colleagues felt everyone experiences anxiety when under stress. Along with these similarities and differences in the major assumptions of both of these theoretical models there are also differences in the compon ents included in the SOD model and some of the definitions of variables that are found in the SOD model and the model developed by Lazarus and Folkman. As described above the major components of the Lazarus and Folkman model of stresscoping include an initial event or situation, person and enviro nmental variables, primary and secondary appraising, coping and then finally an immediate or long term effect. In their work, Scott, Oberst and Dropkin had most of these vari ables within their model but the model was later expanded. Oberst and team (1991) included a s elf care burden variable for patients while Carey and colleagues (1991) added a caregiver bur den variable for caregivers. Even though many of the variables appear to be similar in the separate models, definitions have some variability Like the Lazarus and Folkman model, the S OD model begins with the occurrence of an event or situation that an individual must react to or appraise to determine its relevance and need 22

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for response by the individual. The appraising pro cess is influenced by what Oberst et al. (1991) identified as three initial antecedent categor ies. These three categories encompassed illness factors, personal fact ors and resources (Laza rus and Folkman had only personal and environmental categories). In the study by Oberst, Hughes, Chang and McCubbin (1991), they identified illness factors as those tied specifical ly to the disease, including how distressing the patient felt the symptoms were, how dependent the patients felt, the perceived level of seriousness of the disease and the length of time the patient had been ill. Personal factors identify demographics of the patients including such measures as their age, education and gender. The final category of resources was comprised of socioeconomic status of the patient and the level of family hardiness. Family hardiness was conceptualized as the fam ilys internal strengths and durability (1991). Lazarus and Folkman showed th e initial antecedent variable s in their model directly impacting the appraising process while in the SO D model that Oberst and colleagues used in their 1991 work they added a mediating factor be tween the initial anteced ent variables and the appraising process. This new variable was identi fied as self-care burden and was defined as the product of both self care demands, that is dema nds related to taking care of oneself, and the difficulty associated with dealing with these demands. The next component of the SOD model is the appraising process itself. Like Lazarus and Folkman, the work of Scott, Oberst and Dr opkin subdivided appraisi ng into primary and secondary forms. Scott and colleagues however had a different concept for how primary and secondary appraising were define d. They also believed that copi ng was a part of the appraising process rather then a separate variable as Lazarus and Folkman conceptualized it. 23

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Primary appraising focuses on the evaluation of the stressor itself and its personal meaning to the individual. The primary appraising process results in one of three appraisals of stress. These results are identical to the ones outlined by Lazarus and Folkman: 1) irrelevant/benign (that is having no impact on the individual), 2) po sitive (beneficial to the individual) and 3) stressful (having a possible negative impact on the individual). Primary a ppraisals resulting in a stressful perception of the stressor can be furt her broken down into harm or loss, threats or challenges. These categories follow the Lazarus and Folkman model. While primary appraising in the SOD model is similar to that of Lazarus and Folkmans work, secondary appraising is different. Scott an d colleagues identified secondary appraising as focusing on the initial coping st rategies and their effectiven ess in neutrali zing the stress situation (1980). While Lazarus and Folkman saw secondary appraising as asking the question what can be done?, Scott Oberst and Dropkin saw the question being asked during secondary appraising as how well did this coping strategy work and what if anything needs to be done next to alleviate the stress? The outcome of the model is an adaptation of the individual to the stressor. Scott and colleagues saw three potential outcomes to the entire stress-coping proce ss a fluctuation of emotion, a fluctuation of endocrine profile or a behavioral response. They also noted the ultimate adaptation is unique for each individual a nd occurs within a range of effectiveness from maintenance of ideal inte grity to death (1980). Cognitive Appraisal of Stress Research A number of researchers have conducted st udies using models based on the work of Lazarus and Folkman and their st ress model. Northouse and colleagues conducted a study based on this model with a focus on both cancer patient quality of life and car egiver quality of life (2002). Additionally there have been a number of studies that have based their theoretical 24

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framework on the works of both Lazarus and Folk man and Scott, Oberst and Dropkin that have focused on either caregivers alone or patients and caregivers within the same study (Carey et al., 1991; Northouse, Mood, Templin, Mellon, & George, 2000; Northouse, Templin, & Mood, 2001). In a study based on the theoretical work of Lazarus and Folkman, Northouse and colleagues (2002) looked at the quality of life of women with recurr ent breast cancer and also the quality of life of their family caregivers. In the study a total of 189 women and their caregivers completed a battery of instruments. The antecedent variables included person factor s (demographics, self-efficacy and current concerns), social factors (family hardiness and social support) and illness-related factors (symptom distress, stage of disease and diseas e-free interval). Appraisal was the mediating factor in the study and included measures of a ppraisal of illness/caregiving, uncertainty and hopelessness. The outcome variable was the quality of life of both the patient and the caregiver. In a slight change from Lazarus and Folkman s original model, Northouse predicted that the illness-related factors would have a direct effect on each persons QOL and an indirect effect on their quality of life through the appraisal variables (2002). In this study the models accounted for 80.6% of the patients mental health quality of life and 81.2% of the caregivers mental health. Looking at physical qual ity of life the model accounted for 71.5% in the patient population an d 71.7% in the caregiver population. Focusing specifically on caregiver QOL, th e results of the study showed that personal f actors (family members education, caregiving efficacy and curren t concerns) had a significant direct effect on at least two of the appraisal variables, while ca regiver efficacy and current concerns had a direct effect on all three appraisal variable s. Each of these factors also had a significant indirect effect 25

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on mental QOL. Only caregiving efficacy had an indirect effect on physical QOL while current concerns had a significant dir ect effect on physical QOL. Of the social factors measured, only the caregiv ers assessment of family hardiness showed any significant results, having a direct effect on caregiver hopelessne ss and uncertainty along with direct and indirect effect s on both mental and physical QOL. Illness-related factors did not have a significant impact on the mediating f actors (only caregiver symptoms and patient symptoms significantly predicted ne gative appraisal of caregiving). Of the effects of the illnessrelated factors on caregiver QOL, only caregiver sy mptoms had a significant predictive effect with both a direct and indirect effect on mental QOL and a di rect effect on physical QOL. Carey, Oberst, McCubbin and Hughes (1991) conducted research that combined the models of Lazarus and Folkman and that of SOD. This study looked at caregivers of patients receiving chemotherapy to explore what vari ables were predictive of caregiver mood. Unlike the Northouse model discussed above which only had exogenous antecedent factors, two sets of antecedent factors (exogenous and endogenous) we re included in this model. The exogenous factors in this model included pa tient/illness characteris tics (seriousness of the disease, length of the illness, dependency of the patient and symptom control), caregiver characteristics (age, education, gender and health) and resources (socioeconomic and family hardiness). The endogenous antecedent factor included in the study was caregiving burden, which included measures of demand a nd difficulty of the caregiving role. The mediating factor was again appraisal, th is time measured on five levels including harm/loss, threat, challenge, bene fit and benign. For analysis pur poses harm/loss and threat were grouped together as negative appraisal because of high multicollinearity. The outcome factor was caregiver mood with only tota l mood disturbance included in the final study analysis. 26

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Included in the study were 49 family careg ivers caring for cancer patients currently receiving outpatient ch emotherapy. Results of the analysis show that 47% of variance of caregiver burden was related to patient depende ncy. None of the other exogenous antecedent variables predicted caregiving burden. Negative appraisal was directly influenced by the health of th e caregiver (those with worse health had a more negative appraisal of caregivin g), family hardiness (higher levels of family hardiness likely leads to fewer reports of nega tive appraisal of caregivi ng) and caregiving burden (those who perceived caregiving to be a burden were also likely to appraise caregiving as being a negative stressor). Patient dependency did not have a direct influence on negative appraisal of caregiving but because of its direct effect on car egiver burden it did have an indirect effect, accounting for 50% of the varian ce in negative ap praisal. Finally, stepwise regression an alysis showed that 49% of the variance in mood dysfunction was accounted for by negative appraisal and age of the caregiver. Younger caregivers were more likely to experience higher leve ls of mood disturbance as comp ared to older caregivers. Additionally, those who had a nega tive perception of their caregivi ng role also were more likely to have greater levels of mood di sturbance. The fact that nega tive appraisal was one of only two variables with a direct effect on caregiver m ood helped to support the model that identifies appraisal as a mediating factor between the outco me variable and the two sets of antecedent variables. Northouse and colleagues conducted two studies (2000 & 2001) focused on caregivers that used a model from the combined works of Lazarus and Folkman and Scott, Oberst and Dropkin. The first study looked at how well both patients a nd caregivers adjusted to a diagnosis of colon cancer. A total of 112 subjects participated in the study with 56 patients and 56 spouses. 27

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Surveys were filled out during three different time frames (one week following diagnosis, 60 days post surgery and one year pos t surgery). In this study the m odel predicted that adjustment to the disease would be influenced by person, so cial and illness-relate d factors and that the effects of these three factors would be mediated by an individuals appraisal of the situation. Person factors included variables measuring dem ographics, role of th e participant (either patient or caregiver) and concurrent stress (the degree of stress in a variety of areas). Social factors included measures of family functioning, social support and marital satisfaction. The final antecedent factor was illness-related factors, which identified whether or not the patient had received a colostomy or not. The assessment of appraisal involved two separate variables: uncertainty about the nature and course of the illness and hopelessness about the future. The outcome factor in this study was psychological adju stment and consisted of measures of level of emotional distress and number of role adjustment problems. Results of surveys completed one year after surgery supported the predicted model. Caregiver uncertainty had a direct effect on the car egivers role adjustment problems at one year post-surgery. Uncertainty also acted as predic ted, mediating the effects of caregiver age, caregiver concurrent levels of stress and the presence of a colostomy. Certain predicted antecedent variables were found to have direct ef fects on role adjustment rather then predicted indirect effects. Specifically caregiver marital satisfaction and presence of a colostomy both had direct effects (as previously noted colostomy also had a significant indirect effect) on caregiver role adjustment when it was expected that their effects would only be indirect. Caregivers age and concurrent stress both had direct effects on caregiver hopelessness but these effects did not carry on to role adjustment as the direct effect of hopelessness was not found to be significant. The final predictive va riable was caregiver role problems assessed at 28

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time one. These had a direct effect on role adju stment at time two. Overall the model accounted for 64% of the caregivers role adjustment. The second study by Northouse and colleagues (2001) again looked at couples. The specific focus was couples adjustment to breast cancer during the first year following diagnosis. Subjects in the study were 131 couples with 58 ha ving a breast cancer diagnosis and 73 having a benign diagnosis. Data were collected from part icipants at 1 week, 60 days and 1 year after diagnosis. The focus of this review will be on both the husbands adjustment to the diagnosis and emotional distress at one year post-diagnosis. The model used in the 2001 study was simila r to the 2000 study previously discussed regarding three major components making up the model: antecedents, mediators and outcomes. Antecedent factors again included person, social and illness-related factors. The mediating factor was appraisal of the stressor and the outcome was ad justment to the diagnosis. Person factors measured were demographics of the subjects and concurrent stress (impact of other stressors the subject is currently facing while also f acing the cancer diagnosis). The variable included within the social factor was marital satisfac tion. The illness-related factor was defined as severity of the illne ss. Severity was classified as benign, malignant with no lymph node involvement and malignant w ith lymph node involvement. Appraisal of the diagnosis was measured by tw o variables, hopelessn ess and uncertainty. The final outcome of adjustment was also measur ed using two variables. The variables were measures of emotional distress and role problems. Because this model was longitudinal Northouse and colleagues also incl uded in their model the measure of adjustment at baseline (one week post-diagnosis) as a predictor of adjustment at one year post-diagnosis. 29

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Following other stress models, Northouse and colleagues predicted that the three antecedent factors would have an indirect effect on adjustment. The effect of these factors would be mediated through the appraisal factor, which would have a dire ct influence on adjustment to the diagnosis. The model in this study contai ned two changes that were not included in the Northouse model discussed above. The first change saw one of the antecedent factors (illnessrelated) hypothesized to have not only an indirect effect on the out come but also a direct effect on adjustment to the diagnosis. Because of th e longitudinal nature of the study they also predicted that baseline adjustment (measure one w eek post-diagnosis) would have a direct effect on how adjustment to the diagnosis was perceive d at the final survey time. The model also suggested an interaction between the patients pe rception of adjustment and the perception of the husband. In their analysis, Northouse and colleagues ran two separate models, one for each of the outcome variables measured. The first model looked at how role adju stment problems were predicted by the model. Overa ll, the significant variables account ed for 59% of the variance in the husbands role adjustment problems one year after diagnosis. As predicted, uncertainty, baseline role problems, illness severity and the patients role problems a ll had direct effects on the husbands role adjustment problems at one year post-diagnosis. Additional variables that had not been predicted to have direct effects were identified from the analysis and included concurrent stress and marital satisfaction. These variables were only predic ted to have indirect effects through either uncertainty and/or hopelessness. Two factor s did have indirect effects; education and marital satisfacti on and both had their effects medi ated through uncertainty. Both concurrent stress and marital satisfaction were significantly related to hopelessness, but 30

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hopelessness failed to significantly predict role ad justment problems and therefore did not act as a mediating factor as predicted. The second model that Northouse and colleague s ran considered th e husbands emotional distress one year after diagnosis as the outcome variable. As predicted, direct effects on emotional distress were found for husbands base line emotional distress, hopelessness and the patients emotional stress one y ear after diagnosis. An indirect effect was found for husbands baseline emotional distress with hopelessness acting as the mediating variable. Husbands education level and concurrent stress were signi ficantly related to uncertainty but as with hopelessness, uncertainty failed to significantly pr edict role adjustment problems and therefore did not act as a mediating factor. All the studies reviewed that used models based on the concept of cognitive appraisal suggested that there was always some mediati on between the measured antecedent variables and the appraisal component of the model leading to the emotional outcome of the participants. While no models showed full mediation of th e antecedents through the appraisal component, they all suggested that a large portion of the variance in the emotional outco mes were attributed to the appraisal component. The next section of this chapter will explore the model proposed for this study and will identify how the variables ch osen to measure fit into the concept of a cognitive appraisal of stress model. Cognitive Appraisal of Stress in Careg ivers of Pediatric Oncology Patients The model used in this study contains elements of the models put forth by Lazarus and Folkman (1984), Scott, Oberst and Dropkin (1980) and Care y, Oberst, McCubbin and Hughes (1991). The complete model is presented in figure 2-1. In any cognitive appraisal model of stress there is an initial event or situ ation that initiates the stress appraisal process. The focus stimulus for this project was the diagnosis of cancer in 31

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pediatric patients. Family caregivers of these ch ildren were the population of interest that were surveyed to see what factors influence their a ppraisal of their caregiv ing role and how their quality of life is affected by their role as a caregiver. Like the modified SOD model introduced by Carey and colleagues (1991), this model has two sets of antecedent variables. The first vari able set is exogenous variables while the second set is endogenous in nature. The exogenous set of antecedent variables (Fig 2-2) fell into the two main categories: environmental and personal. E nvironmental variables in this study were those that were tied specifically to the disease itself. Measures included the time since the patient was last diagnosed and the number of medications the patient was currently taking. The personal variables were classified as either caregiver vari ables or patient specific variables. Measures related to the patient were gende r and age. Caregiver variable s included gender, age, marital status, employment status, ethnicity education level, relationship to the patient, SES, presence of social support, employment status and source of medical expense coverage. The next step in the model involved the endoge nous variables that were first included in the work of Oberst and colleagues (1991). Th e current model consid ers caregiver burden including medication hassles along with more general caregiving demands (Fig 2-3). Demands will focus on both the intensity and time devot ed to caregiving while the medication hassles measurement will look at the intensity of the hass les associated with management of a patients medication regimen. Appraisal of stress was included in this model in the role of a media ting factor between the already discussed exogenous and endogenous anteced ent variables and the outcome of interest, caregiver quality of life (fig 2-4). In this study, appraisal as stressful was the focus of analysis. 32

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In particular, level of appraisal of stress as a threat was examined using an established instrument assessing caregiver stress. The final outcome variable in the model is quality of life. Quality of life is a multidimensional measure that encompasses a number of concepts including physical functioning, emotional functioning, family functi oning and social functioning. The complete model is included in Figure 2-1 below. Research Questions The objectives of this study were to (1) valida te a quality of life instrument for use in a population of caregivers of childre n with cancer and (2) to test a cognitive appraisal model of stress in the same population to identify factors that influence caregiver quality of life with specific focus on demands and hassles and the a ppraisal of stress relate d to caregiving. The following research questions were established fo r the purpose of meeting the above objectives. Question 1 focuses on Objective 1, while questi ons 2 through 7 are focused on Objective 2. 1. Is the Caregiver Quality of Life Index Can cer Scale a reliable a nd valid instrument to use to measure quality of life in a populat ion of caregivers of children with cancer? 2. Will the exogenous antecedent vari ables in the model being test ed (patient characteristics, caregiver characteristics and illness characteristics) predict the demands placed on the caregiver? 3. Will the exogenous antecedent variables in the model being tested predict the caregivers assessment of hassles related to medication administration? 4. Will the exogenous antecedent variables and endogenous antecedent variables (demands and medication administration hassles) pr edict the caregivers stress appraisal? 5. Will the exogenous antecedent variables and endogenous antecedent variables (demands and medication administration hassles) pr edict the caregivers quality of life? 6. Will the exogenous antecedent variables a nd endogenous antecedent variables and caregivers stress appraisal predict the caregivers quality of life? 33

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7. Will the final model be a fully mediated model with only stress appraisal having a direct effect on CQOL or will it be a partially mediated model with some other variables aside from stress appraisal ha ving a direct effect? C a n c e r D i a g Patient Characteristics Caregiver Burden Caregiver Stress Appraisal Caregiver Quality of Life Demands Hassles Caregiver Characteristics Figure 2-1. Cognitive appraisal model of stress for car egivers of pediatric oncology patients Figure 2-2. Exogenous antecedent variables in the model Exogenous Variables Cancer Diagnosis Patient Characteristics Caregiver Characteristics Caregiver Characteristics n o s i s Illness Characteristics 34

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35 Figure 2-3. Endogenous antecedent variables added to the model. Figure 2-4. Mediator vari able (caregiver appraisal) added to the model C a n c e r D i a g n o s i s Patient Characteristics Caregiver Characteristics Illness Characteristics Caregiver Burden Demands o Intensity o Time Hassles o Intensity Exogenous Variables Endogenous Antecedent Variables C a n c e r D i a g n o s i s Patient Characteristics Caregiver Characteristics Illness Characteristics Caregiver Burden Demands o Intensity o Time Hassles o Intensity Exogenous Variables Endogenous Antecedent Variables Caregiver Stress Appraisal Mediator Variable

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CHAPTER 3 LITERATURE REVIEW The focus of this chapter is to provide insight into what type of res earch has been done to date with regards to caregiver quali ty of life. To keep in line with the current research project the studies reviewed are all studies that include cancer as the primary or one of the primary disease states. Areas that will be addressed will be the type of instruments that have been used to study caregiver quality of life (QOL), the type of caregiver populations th at have been studied, the theoretical frameworks that have guided these studies, the findi ngs of the studies with regard to caregiver QOL and the limitations of past rese arch. Finally the chapter will conclude with a discussion of how the current project builds on th e studies that have already been conducted. Cancer Caregiver Quality of Life Research The author performed a literature search of the PubMed, CINAHL and ISI Web of Science electronic databases using key words: caregiver, caregiving, quality of life, cancer, child, pediatric(s) and parent. Inclusion criteria for articles were that they had to be in English, a primary measure of the study had to be caregiver qua lity of life, the caregivers were to be unpaid family caregivers and not paid professionals, da ta analysis had to look at identifying factors related to QOL. Patients being cared for by the caregivers had to have a diagnosis of cancer. Along with the database search, re ference lists for identified ar ticles were culled as well for additional studies not identified in the database searches. The literature search netted a total of 26 usable articles that met the inclusion criteria. Sixteen of the articles were ba sed in North America, while the other ten articles came from countries outside North America. Articles were published as recently as 2007 and dated back to 1994. The fact that all the studies were conducted within the past 13 years coincides with that fact that caregiver quality of lif e research is a fairly young field of research that is primed for 36

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great expansion over the next few y ears. It is also a topic that crosses over numerous health care fields as studies were conduc ted in disciplines including nursing, psychology, and medicine. Table 3-1 contains a summary of th e articles included in this review along with some of the facts regarding each of the studies. Quality of Life When it comes to the study of quality of life, a review of literature focused on either patients or caregivers will show th at in most respects there is lit tle agreement as to an explicit definition of quality of life (Le et al., 2003). What is consistent is an understanding that quality of life itself is a multidimensional concept that can include a range of domains. Domains often included are physical, social and psychological domains. Other domains that have been included but are not seen as often in studies include financial, spir itual, anxiety, burden, family functioning and depression (Edwards & Ung, 2002). The lack of a consistent and agreed upon de finition of quality of life is clear in the 26 articles that were reviewed here. In all, only four out of the 26 articles clearly defined quality of life outright while others simply hinted at the concept of what it was they were measuring. The four studies found to define quality of life all used a different definition to identify what ultimately is assumed to be the same concept. Wagner and colleagues (2006) saw QOL as a multi-dimensional construct measuring overall enjoyment of life, while Yamazaki and colleagues (2005) viewed QOL as perceived health status and daily func tioning associated with changes in health status, includi ng physical and mental health and role and social functioning. Witt Sherman and colleagues (2006) combined severa l concepts to come up with their perception of QOL that is the impact of sickness and h ealth care on a persons daily activities and sense of well-being, and is related to an individuals ability to cope, which is highly individualized. The fourth article found to clearly define QOL relied on what would be viewed as the most accepted 37

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definition as it is the definition designated by the World Health Organi zation Quality of Life Group (WHOQOL). Chien and colleagues (2003 ) conceptualized QOL as individuals perceptions of their position in li fe within the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. Measuring Quality of Life Tied into the fact that there is little agreement as to how res earchers define quality of life, there is also little agreement as to how QOL should be measure d. Of the 26 articles reviewed there were at least 15 different instruments used to measure caregiver QOL with some studies using more then one instrument to measure QOL. The instruments identified were classified into one of three measurement categories: gl obal, generic and disease specific. Global instruments Global instruments are single item instruments (generally a visual analogue scale) that measure QOL across any population. They leave it up to the individual to conceptualize what they consider QOL to be. Because of this in dividual assignment of QOL these instruments are difficult to use to compare QOL scores across di fferent populations. Global instruments were the sole means of QOL measurement in four of the 26 studies reviewed. Hagedoorn and team (2000) had caregivers rate their QOL on a scale of 0 to 10 with higher scores indicative of the best imaginable life. The other three global instruments were all 100m m visual analog based instruments (Nijboer, Triemstra, Tempelaar, Sanderman, & van den Bos, 1999; Iconomou, Viha, Kalofonos, & Kardamakis, 2001; Clark et al., 2006). Generic instruments Generic instruments are multiple item instru ments or multiple instruments that measure multiple concepts of quality of life. Just over half (15) of the studies reviewed here used some type of generic instrument to measure quality of life. The mo st prevalent generic instrument 38

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used in these studies was the Medical Outc omes Study Short From 36 (MOS SF-36). This instrument has been validated in numerous pop ulations and countries so it allows for some comparison of scores across studies. The MOS SF-36 consists of 36 items that fa ll into eight multi-item scales (physical functioning, role-physical, bodily pa in, general health, v itality, social functioning, role-emotional and mental health). The eight subscales are cl ustered into two summary measures of physical health and mental health. Studi es reviewed here based their results on the two summary scores only (Kershaw, Northouse, Kritpracha, Schafenacker, & Mood, 2004; Northouse et al., 2002; Weitzner, Jacobsen, Wagner, Friedland, & Cox, 1999; Kim, Baker, & Sp illers, 2007) or on the scale score and summary scores (Wagner et al., 2006; Yamazaki et al., 2005; Boyle et al., 2000; Tuinman, Fleer, Hoekstra, Sleijfer & Hoekstra-Weebers, 2004). Ot her generic instruments used in the studies reviewed included the Quality of Life Index (Gaston-Johansson, Lachica, FallDickson, & Kennedy, 2004), the Profile of Mood States-Short Form and Caregiver Strain Index (Campbell et al., 2004; Kim et al., 2007), Assessment of Quality of Life at the End of Life (Axelsson & Sjoden, 1998), World Health Orga nization Questionnaire on Quality of Life: BREF-Taiwan Version (Chien et al., 2003 and Chang, Tsai, Chang, & Tsao, 2007), the Quality of Life-Family (Borneman et al., 2003), the Mental Health Inventory-17 (Kornblith et al., 2001), the Quality of Life Scale (Family Version) (Witt Sherman et al., 2006) and the Functional Assessment of Chronic Illness Therapy-Spirituality (Kim et al., 2007). That is seven additional studies using eight different generic instruments to measure what is conceptually the same outcome. Disease-Specific instruments Disease-specific quality of life instruments are similar to generic instruments in that they are multi-item instruments that measure multiple concepts. They can either provide overall 39

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quality of life scores or a combination of subs cale scores and overall scores. Unlike generic instruments that are viable across multiple popula tions, disease-specific instruments, as their name implies, are designed to measure quality of life within a specific disease state. The items of measurement have been developed with specific activities a nd outcomes associated specifically with a given disease st ate. The instruments can be focu sed even more specifically on populations within disease states, lik e patients or caregivers. Nine of the studies reviewed used some type of cancer-specific instrument to measure quality of life. Five of the nine studies used the Caregiver Quality of Life Index Cancer (CQOLC) or a language-adapted version of the instrument. The CQOLC is the same instrument us ed in this study so it is discussed in more detail in the Methods chapter. The other four instruments included the Functional Assessment of Cancer Therapy (Northouse et al., 2002), the Can cer Caregiver Quality of Life Index Chinese Version (Chen et al., 2004), the Functional Assessm ent of Cancer Therapy-BMT (Boyle et al., 2000) and the EORTC Prostate Cancer Quality of Life Questionnaire (Kornblith et al., 1994). Additional Study Characteristics Twenty four of the studies re viewed included caregivers of adult cancer patients while only two were found that looked at th e caregivers of children with can cer. Convenience samples were used in 20 of the studies while six studies used longitudinal study techniques to track quality of life over an extended period. Twenty one studies id entified what the types of cancer the patients had while five did not. Of the 21 studies, the majo rity focused on breast or prostate cancer while the others focused on other specific cancer types or included patients co vering a wide range of cancer types. Sample sizes ranged from 20 to 270 across the studies and nine studies compared the caregiver results to the patients, healthy ma tched subjects or other caregivers. Looking at whether or not the study was guided by a theore tical foundation, ten stud ies identified some 40

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theoretical model as their basis while the rema ining 16 did not. Caregivers in the studies included spouses/partners only in seven studies and a combination of individuals in the other 19 studies including children, pare nts, siblings, family friends, in-laws or other relative. Factors Associated with Caregiver Quality of Life Current research in caregiver quality of life has identified a number of factors that are associated with or predictive of car egiver quality of life. In an effort to organize the findings of the studies identified for this review and to keep in line with the theoretical framework used in this current study, factors that were found to be si gnificantly associated with caregiver quality of life in the reviewed studies were organized into one of three cate gories: patient factors, diseaserelated factors and ca regiver factors. Patient characteristics Patient factors were those related specifically to the patient. Factors ranged from general demographic information like age and gender to fact ors such as performan ce status and activities of daily living. The impact that cancer had on a patient was meas ured in a number of studies. Impact was measured by the patients ability to perform ove rall activities of daily living (Wagner et al., 2006), to perform specific daily activities (Axelsson & Sjoden, 1998) and as a measure of the patients overall physical status and ambulatory ability (Weitz ner & McMillan, 1999; Weitzner et al. 1999a; Weitzner et al., 1999b) Of the items related to th e patients ability to lead a normal life, all but one study id entified a negative relationship between these patient measures and caregiver QOL, which suggests that as the pa tient physically deterior ates and becomes more reliant on others to function physically the caregivers quality of life d eclines. While two of Weitzners studies (Weitzner et al. 1999a a nd Weitzner et al., 1999b) showed a negative 41

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relationship between physical st atus of the patient and caregiver QOL, Weitzner & McMillan (1999) identified a slight ly positive relationship. Patient gender was identified in only one study as having a significant relationship to QOL. In this case Chien and colleagues (2003) iden tified that caregivers of females reported a significantly lower measure of so cial relationships (one of four QOL domains measured) than caregivers of male patients. Pa tient depression was another fact or identified as negatively influencing caregiver QOL (Nijboer et al., 1999). Finally persona l factors related to patients were identified by Kornblith and colleagues (1994) as having an influence on caregiver QOL. Four factors identified as havi ng a negative impact on caregiver QOL were patient pain level, frequent urination by the patient, decreased sexual intere st and patient lack of energy. As these factors all increased for the pati ent (that is they got worse) th e caregivers saw a negative impact in certain factors related to their QOL. Clark and colleagues (2006) looked at what effect an intervention to improve the patients overall qualit y of life would have on the caregivers quality of life. In the end they saw no effect when comparing longitudinal re sults for caregivers of patients who had received the intervention and careg ivers of patients who rece ived standard care. Disease related factors A handful of the studies reviewed identified di sease specific factors as potential predictors of caregiver QOL. Disease related factors were those tied specifically to the disease and included factors ranging from dis ease type to time since diagnosis and stage of the disease. Reviewing the results of the studies showed that when disease specific factors were measured they often had no effect on caregiver QOL (Wag ner et al., 2006; Kershaw et al., 2004; Iconomu et al., 2001; Northouse et al., 2002). One study (Chien et al., 2003) identified tw o disease-specific factors as having an influence on caregiver QOL. The time since di agnosis had a negative impact (as time since 42

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diagnosis increased caregiver QOL decreased). Treatment stage of the child also had an impact with parents of deceased children reporting the lowest QOL scores, while parents of children who were just under surveillance reporting the hi ghest QOL. Caregivers of children who had relapsed reported scores that fell between the other two stages discussed. Disease site was also found to have an influence on reported caregiver QOL scores (Weitzner et al., 1999b). The site of cancer diagnosis (lung, breast or prostate in this study) suggested that caregivers of patients with certain types of cancer were impacted more than caregivers of patients with othe r types of cancer. Caregivers of patients with lung cancer reported lower QOL scores than caregivers of pa tients with prostate can cer and caregivers of breast cancer patients had higher assessments of their QOL compared to caregivers of patients with prostate cancer. Caregiver characteristics The final breakdown of categories from the revi ewed studies included factors that were associated with the caregivers themselves. Caregi ver characteristics included factors that ranged from basic demographics to factors related to th eir caregiving roles such as level of self-efficacy and symptom management. The coping skills of the caregiver (both emotion-focused and problem-focused) were shown to have a negative relationship with caregiver quality of life while the presence of social support was found to have a positive impact on caregiver QOL (Wagner et al., 2006). Social support was found to be positively related to caregiver QOL in other studies as well (Northouse et al., 2002; Yama zaki et al., 2005; and Chang et al., 2007). Kim and colleagues (2007) found that caregivers self-esteem had pos itive effects on three of four quality of life dimensions that they measured (it had no effect on the fourth dimension). Other factors that were found to be positively relate d to caregiver qualit y of life included care giver age, caregiver efficacy, family hardiness, higher education level, higher self-repor ted health status, relationship 43

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with the patient, employment stat us, caregiver income level, quali ty of the relationship with the patient, self-esteem, marital status and county of residence population (Kershaw et al., 2004; Northouse et al., 2002; Chien et al., 2003; Weitzner et al., 1999b; Nijboer et al., 1999; Meyers & Gray, 2001; Witt Sherman et al., 2006). Along with coping skills having a negative impact on caregiver QOL, others factors were also identified as having a similar effect. Demographic factors that lowered caregiver QOL included age and education level (Kershaw et al., 2004; Campbell et al., 2004) along with relationship to the patient, with spouses and pa rtners reporting lower QOL compared to other caregivers (Witt Sherman et al., 2006). Looking beyond simple demographics, caregiver quality of life was negatively influenced by fatigue, de pression, anxiety, burden of care, coping strategy, impact of caregiving on life, negative appraisal of caregiving, feelings of hopelessness, health status and caregiving stress (Gas ton-Johansson et al., 2004; Kers haw et al., 2004; Iconomou et al., 2001; Northouse et al., 2002; Chien et al., 20 03; Nijboer et al., 1999 ; Kim et al., 2007). Chang and colleagues (2007) looked at what eff ects sleep quality had on the caregiver QOL and identified a number of factor s that had negative effects on QOL assessment including, daytime dysfunction, sleep disturbance and subjective sleep quality Individual components of QO L itself also had effects on other QOL domains and overall quality of life. Nijboer and colleagues (1999) found that caregivers with high levels of quality of life at baseline reported higher QOL at 6 months Higher mental health was found in multiple articles to be positively related to caregive r QOL (Weitzner et al., 1999a; Rhee at el., 2005). Limitations in the Current Research One of the most significant limitations discussed earlier is the lack of a consensus on what makes up quality of life. A total of 26 articles were reviewed and only f our had a clear definition of quality of life. This lack of a consensus l eads to two other issues. The first is the wide44

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ranging types of instruments used to measure qua lity of life. Instruments were found to be global, generic or disease specific. The second other issue that is spawned from the lack of a consensus for defining QOL is that the use of so many different types of instruments leads to the inability to be able to compare results across diffe rent studies and therefore different populations. Another fault found in many of these studies and in most psychological studies, for that matter, is that the participants are drawn from convenience samples and there is little longitudinal work done to look at th e true impact of caregiving. Ca ncer is a chronic disease that generally requires long term care by the caregiver. Studies that ar e only taking a snapshot of the caregivers live face the possibility of not capturing a true picture of what impact the disease is actually having on the caregiver. While the researchers of these reviewed studies looked at a number of factors that influence caregiver quality of life, none of the studies here looked at the impact that the administration of the patients medication had on the caregivers QOL. Proper pain control depends on proper medication dosing which often beco mes the responsibility of the caregiver. A final limitation of the studies reviewed cente rs on the minimal focus on caregivers of children with cancer. Two of the 26 articles had a pediatric focus, while the others were all focused on caregivers of adult patie nts (at least 18 years of age). While the number of pediatric incidences of cancer is below that of adult cases, the fact remains that family caregivers of pediatric patients face many of the same difficu lties as family caregivers of adult patients. However, caregivers of pediatric patients also face many different obstacles, that are not experienced by caregivers of adult patients and it is imperative th at health care professionals understand these challenges. 45

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Caregiver Quality of Life in a Pediatric Oncology Setting The current research project set out to addre ss many of the limitations identified from the current literature on the quality of life of caregivers of pati ents with cancer. The focus population was caregivers of children with cancer, which to this point has been mostly ignored in current quality of life research. This study was dr iven by a cognitive appraisal of stress model, which was outlined in detail in chapter 2. This model helped to establish both the factors that were measured and the statistical techniques that were used to analyze the data collected. While some of the factors that were tested in this project have been incorporated into previous studies, newer variables were also added including a measure of the impact of medi cation administration. While this project was not able to address all of the limitations that have been found in the current caregiver quality of life issue, it did address many of them. An effort was made to further identify how family caregivers are imp acted by their roles and to remind health care professionals of the impact that a disease like cancer has on not only the patient but also their loved ones who play a major, but often i gnored role in the health care process. 46

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Table 3-1. Studies of quality of life of caregivers of cancer patients Title Authors Year Design QOL Instrument Type of QOL Instrument Sample (Spouse, parent, family, other) Patients (adults or Children) Definintion of QOL (yes/no) Quality of Life of Husbands of Women with Breast Cancer Christina D Wagner, et al. 2006 Crosssectional Medical Outcomes ShortForm (SF-36) generic husbands Adult Yes Psychological distress, fatigue, burden of care and QOL in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation Fannie GastonJohansson, et al. 2004 CrossSectional Convenience Sample Quality of Life Index Generic Majority were husbands (90%), others not specifically identified Adult No (conceptualized as 4 domains health & functioning, socioeconomic, psychological/spriti ual, family) Coping strategies and QOL in women with advanced breast cancer and their family caregivers Trace Kershaw, et al. 2004 Crosssectional convenience samples Medical Outcomes ShortForm 36 (SF-36) Generic Husbands, sisters, daughters, sons and relatives/friends Adult no Prostate Cancer in African Americans: Relationship of patient and partner selfefficacy to QOL Lisa C Campbell, et al. 2004 CrossSectional Convenience sample Profile of Mood StatesShort Form (POMS-SF) and Caregiver Strain Index Generic and Generic Partners of prostate cancer patients (adults) Adult no Couples dealing with cancer: role and gender differences regarding psychological distress and QOL Mariet Hagedoorn, et al. 2000 Cross Sectional Convenience Sample Quality of life ladder scale Global partners of cancer patients. Adult NO Quality of life of cancer patients and their spouses in palliative home care Bertil Axelsson and Per-Olow Sjoden 1998 Longitudinal modified Assessment of quality of life at the end of life (AQEL) Generic partners of cancer patients Adult No Impact of Cancer on primary caregivers of patients receiving radiation therapy Gregoris Iconomou, et al. 2001 Crosssectional convenience sample 100mm visual analogue scale Global spouse (54.5% female) Adult No 47

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48 Table 3-1. Continued Title Authors Year Design QOL Instrument Type of QOL Instrument Sample (Spouse, parent, family, other) Patients (adults or Children) Definintion of QOL (yes/no) The caregiver quality of life index-cancer (CQOLC) Scale: revalidation in a home hospice setting Michael A Weitzner, Susan C McMillan 1999 Crosssectional convenience sample Caregiver Quality of life Index-cancer Scale (CQOLC) Disease Specific family caregivers of adult cancer patients in a hospice setting (spouse, mother, daughter, son, sibling and other) Adult No The caregiver quality of life indexcancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer Michael A Weitzner, et al. 1999 CrossSectional, convenience sample CQOLC Disease specific Spouse, mother, daughter, son sister and other Adult no Korean Version of the Caregiver Quality of life indexcancer(CQOLC-K) Young Sun Rhee, et al. 2005 Cross Sectional, Convenience Sample Caregiver Quality of Life Index Cancer (QOLC-K) Disease Specific Spouse, child, parent and other Adult no Quality of life of women with recurrent breast cancer and their family members Laurel L Northouse, et al. 2002 crosssectional, convenience sample Functional Assessment of Cancer Therapy (FACT-G) and the SF-36 FACT-G = disease specific, SF-36 = generic Husband, children, sister or other friend relative adult no Health-related Quality of Life of Mothers of Children with Leukemia in Japan Shin Yamazaki, et al. 2005 CrossSectional, Convenience Sample Short-Form 36 (SF-36) Generic Mothers of leukemia patients Children Yes Quality of Life Among Primary Caregivers of Taiwanese Children with Brain Tumor Li-Yin Chien, et al. 2003 Combination of randomly selected strata and a convenience sample World Health Organization Questionnaire on Quality of Life: BREF-Taiwan Version (WHOQOLBREF-TAIWAN) Generic Caregivers (mothers, fathers and grandmother) of children with brain tumor Children yes

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Table 3-1. Continued Title Authors Year Design QOL Instrument Type of QOL Instrument Sample (Spouse, parent, family, other) Patients (adults or Children) Definintion of QOL (yes/no) Family Caregiver Quality of Life: Differences Between Currative and Palliative Cancer Treatment Settings Michael A Weitzner, Susan C McMillan, Paul B Jacobsen 1999 Crosssectional, convenience sample Caregiver Quality of Life Index-Cancer and SF-36 overall physical health scores Disease Specific and generic Spouse, child, other Adults no Determinants of Caregiving Experiences and Mental Health of Partners of Cancer Patients Chris Nijboer, et al 1999 Longitudinal Study one-item linear visual analogue selfassessment scale Global Partner of patient (spouse, lover, etc) Adults no Impact of Cancer patient's quality of life on that of spouse caregivers. Mei-Ling Chen, et al. 2004 Crosssectional, convenience sample Caregiver Quality of Life Index (chinese Version) disease Specific Partners, children, other Adult No Concerns of family caregivers of patients with cancer facing palliative surgery for advanced malignancies Tami Borneman, et al. 2003 Longitudinal Quality of LifeFamily (QOL-F) Generic Spouse, child, parent and other Adults (18 and older) no Caregiver Quality of Life after autolongous bone marrow transplantation Deborah Boyle, et al. 2000 CrossSectional, Convenience Sample SF-36 and Functional Assessment of Cancer Treatment-BMT (FACTBMT) Generic and disease specific Spouse, parents, friends and other Adults (older then 19) No The Relationships between family primary caregiver characteristics and satisfaction with hospice care, quality of life an burden Judy L Meyers, Louis N Gray 2001 CrossSectional, Convenience Sample Caregiver Quality of Life Index-Cancer (CQOL-C) Disease Specific Spouse, child, in-law, other Adults No Quality of life of patients with prostate cancer and their spouses Alice B Kornblith, et al. 1994 CrossSectional, Convenience Sample EORTC Prostate Cancer Quality of Life Questionnaire Disease Specific spouses/partners Adults over 50 No 49

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Table 3-1. Continued Title Authors Year Design QOL Instrument Type of QOL Instrument Sample (Spouse, parent, family, other) Patients (adults or Children) Definition of QOL (yes/no) Quality of life and stress response symptoms in longterm and recent spouses of testicular cancer survivors Marrit A Tuinman, et al. 2004 CrossSectional, Convenience Sample RAND-36 (Dutch version of the SF-36) Generic spouses during diagnosis and treatment and spouses after treatment Adults over 20 No The impact of docetaxel, estramustine and low dose hydrocortisone on the quality of life of men with hormone refractory prostate cancer and their partners: a feasibility study AB Kornblith, et al. 2001 Longitudinal Mental Health Inventory17 generic Spouse, siblings, children and friend Adults No Quality of life of patients with advanced cancer and acquired immune deficiency syndrome and their family caregivers Debroah Witt Sherman, et al. 2006 Longitudinal Quality of Life Scale (Family Version) generic Spouse, siblings, children, relative, partner and other Adults Yes Quality of life of caregivers of patients with advanced-stage cancer Matthew Clark, et al. 2006 Longitudinal Longitudinal Analog SelfAssessment Item Global Spouse, siblings, children, parent, and significant other Adults No Quality of sleep and quality of life in caregivers of breast cancer patient Edward WeiChung Chang, et al. 2007 CrossSectional, Convenience Sample World Health Organization Questionnaire on Quality of Life: BREF-Taiwan Version (WHOQOLBREF-TAIWAN) Generic Spouse, or children Adults No Cancer Caregivers Quality of life: effects of gender, relationship, and appraisal Youngmee Kim, et al 2007 CrossSectional, Convenience Sample Profile of Mood StatesShort Form (POMS-SF), Short-Form 36 (SF-36) and Functional Assessment of Chronic Illness TherapySpirituality (FA-CIT-SP) Generic Spouse, children and other Adults No 50

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CHAPTER 4 METHODOLOGY Introduction This chapter discusses the process that was us ed for establishing relia bility and validity of the Caregiver Quality of Life Index Cancer Scale (CQOLC) in a pe diatric oncology setting, describes the dependent and independent variables and their corresponding measurement instruments and lists inclusion cr iteria for subjects. The chapter then moves on to identifying the data analysis strategies and conclude s with the list of the study hypotheses. Caregiver Quality of Life Index Cancer The first goal of this study was to establish validity and reliability of using the CQOLC to measure quality of life of family caregivers who are caring for children with cancer. There are currently a number of generic instruments available to measur e quality of life of family caregivers but to date there is no disease specif ic instrument focused on family caregivers of children with cancer. A review of literature by Edwards a nd Ung (2002) identified four instruments that had been used to measure fam ily caregiver quality of life specifically designed for those in a cancer setting, one of which was the CQOLC. All four instruments had been used to look at family caregivers of adult cancer pati ents (patients over the age of 18). The CQOLC is a 35-item instrument that uses a 5-point Likert-type scale to assess the quality of life of family caregiv ers of cancer patients. The instrument has a maximum score of 140 with higher scores representing a higher qual ity of life. Development of the instrument occurred over three phases that included patient, family caregiver and expert interviews, pilot testing and extensive psychometric testing to esta blish reliability and validity of the instrument (Weitzner et al., 1999a). The instrument, like most quality of life instruments, is 51

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multidimensional with items measuring physical, em otional, family and social functioning as well as spirituality and fi nancial issues (Boling, M acrina, & Clancy, 2003) Psychometric testing was conducted using a sa mple of 263 family caregivers of adult cancer patients diagnosed with lung, breast or pr ostate cancer currently receiving active/curative care. Testing showed that the instru ment had an internal consistency of =0.91 and test-retest reliability correlation coefficient of 0.95. Conve rgent reliability testing results ranged from r=0.49 to r=0.65 when correlation coefficients were examined between the CQOLC and the mental composite score (MCS) of the SF-36 and th e subscale scores that make-up the MCS. Additional convergent relia bility was established by looking at the correlations between the Beck Depression Inventory (BDI) and the CQOLC and also the State Trait Anxiet y Inventory (STAI). These tests resulted in high correlations of -.50 and -.52 respectively. This indicated that lower anxiety and depression scores were associated wi th more positive quality of life. Weitzner and colleagues also looked at how we ll the CQOLC correlated to fam ily caregiver burden using the Caregiver Burden Scale (CBS). Results showed as expected a hi ghly significant correlation of 0.65. Discriminant validity was established by looking at the correlations between the CQOLC and the physical composite score (PCS) of the SF-36, the subscale scores of the PCS, scores from the Multidimensional Scale of Perceived So cial Support (MSPSS) and finally scores from the Marlowe-Crowne Social Desirability Scale (MCSDS). Results showed that low significant correlations were found between the CQOLC an d the subscales of the PCS, and the MSPSS score (range = 0.20-0.37). Results were not signi ficant when looking at the correlation between CQOLC and the PCS score and the results of the MCSDS (Weitzner et al., 1999a). Weitzner and McMillan (1999b) followed up th e initial development and validation study of the CQOLC with a study that validated th e instrument within a population of family 52

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caregivers of cancer patients in a home hospice sett ing. Convergent validity was established in a similar fashion by looking at correlations be tween the CQOLC and MCS score and the subscale scores of the MCS of the SF-36. As before co rrelations were high a nd significant (range = 0.480.67). CQOLC scores were also compared to the total score and subscale sc ores of the Caregiver Quality of Life Index (CQLI). Results showed low to moderate correlation results (range = 0.270.48). Comparing scores between the CQOLC and the CQLI iden tified that while the two instruments were related they do not necessari ly measure the same elements allowing the CQOLC to stand-alone as an independent measure of family caregiver quality of life. Along with the two studies that Weitzner and colleagues (1999a,b) and Weitzner and McMillan (1999) conducted, the CQOLC has been re validated in another disease state Cystic Fibrosis (Boling et al., 2003) a nd another language Ko rean (Rhee et al., 2005). Like the two Weitzner studies, these two revalidation studies followed the same procedures for establishing validity by looking at the streng th and significance of correla tions between scores on the modified CQOLC and the composite and subscale sc ores of the SF-36. Both studies also looked at the relationship between the modified CQOL C and the BDI. Results were similar in both studies with moderate to hi gh correlations found between the modified CQOLC and the mental/emotional measures (MCS and corresponding subscales and the BDI) and low correlations to physical measures (P CS and corresponding subscales). In an effort to reduce any burden on the family caregivers that chose to participate in this study, only subscales of each of the instruments we re used in this study. To measure family caregiver quality of life, we chose to focus on th e burden and financial concerns subscales. The burden subscale items were chosen because of their focus on the emotional impact of the caregiving role on the family caregiver and the family unit of the caregiver. The financial 53

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subscale items were selected to he lp us better understand the fina ncial impact that the caregiving role was having on the family caregiver and their family, given the amount of time that often is devoted to the care of a child be ing treated for cancer, and the fact that it often limits the employment of one or both parents. All items fo r each subscale were used to keep them as the original author intended. The total number of items from these two scales that were used in this study was 13. Appendix A contains a complete copy of the questionnaire packet that the caregivers filled out. Section 1 co ntains the 13 items that were used to measure family caregiver quality of life. The burden subscale items were 1, 2, 3, 4, 5, 7, 8, 9, 10 and 11. The financial concerns subscale included items 6, 12 and 13. Validation of the CQOLC in a pediatric onc ology population occurred in a two-phase process. The first phase of th e instrument validation involved the convening of an expert panel to review the instrument for content validit y. The panel was made up of members of the Hematology/Oncology Division in the Department of Pediatrics at th e University of Florida. In order to establish content validity of the instru ment the role of the panel was to review the CQOLC to assess the clarity and relevance of the items to the target population of family caregivers of children with cancer. Content valid ation allows for the asse ssment of whether the items adequately represent a performance domain or construct of specific interest (Crocker & Algina, 1986). The panel also determined if an y items should be removed or modified. Before presenting the instrument to the panel minor gra mmatical changes were made to the instrument to make the wording relevant to family caregivers of children with cancer. Table 4-1 shows the four items, used in this study, that were changed along with the original ite ms as they appear in the original version of the CQOLC. 54

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Along with the review and modification of items the expert panel was also asked to advise on the actual administration of the instrument. They looked at response options for the family caregivers, time specification for recall (only back 7 days), admini stration strategy (interview or self-completion), time to complete, readability of the instrument (including order of the items) and scoring for possible changes that need to be made to accommodate the target population. The only recommendation by the panel was to cha nge the order of the items as they were originally presented to them. This change meant removing the item I am frightened my child/infant will die as the firs t item the caregivers would see and moving it to later in the survey. The panel did not feel comfortable w ith asking the caregivers to think about the potential death of their child as the first item they would complete related to this study. The second phase of the validation process was to establish reliability and validity estimates for the CQOLC within a population of family caregivers of children with cancer. Family caregivers were recruited from the pediat ric oncology department of the University of Florida Shands Cancer Center (U FSCC) located in Gainesville, Florida. The clinic is in operation five days per week and sees approxima tely 15 patients a day. Eighty to ninety new patients a year seek treatment. Reliability was established by m easuring the internal consistenc y reliability of the overall instrument along with the two subscales as well. Internal consistency is a reflection of the extent to which items measure various aspects of the same characteristic and nothing else (Portney & Watkins, 2000). Cronbachs coefficient alpha ( ) was used as the measure of internal consistency, which ranges from 0.00 to 1.00. Higher levels of are expected to be found for instruments that show high internal consistency with acceptable levels above 0.70. 55

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Convergent validity was estab lished by looking at how the well the family caregivers quality of life, as measured by the modified C QOLC, correlated with the measures for demands, medication administration hassles and appraisal of stress. To establish the presence of convergent validity, Pearsons corre lations were expected to be high between the scores on the CQOLC and the scores for demands, hassles and stress appraisal. Family Caregiver Quality of Life The second objective of this project was to study how the quality of life of family caregivers of children with cancer is influenced by factors associated with a cognitive appraisal model of stress. Primary factors of interest included measures of family caregiver burden (the demands of family caregiving a nd the level of hassles associated with medication management of a child with cancer) and the fa mily caregivers appraisal of st ress associated with caregiving. Secondary variables of interest in terms of their role in predicting family caregiver quality of life were sociodemographic variable s tied to patient characteris tics (age and gender), family caregiver characteristics (age, gender, level of social support marital status, employment status, ethnicity, education leve l, relationship to the patient, hous ehold income and medical expense coverage) and illness characterist ics (time since diagnosis/re-dia gnosis and number of current medications). Instruments used to meet this objective includ ed the CQOLC, the Care of My Child with Cancer (CMCC), the Family Caregiver Medica tions Administration Ha ssles Scale (FCMAHS) and the Appraisal of Caregiving Scale (ACS) along with questions used to collect demographic information. The Care of My Child With Cancer The Care of My Child with Cancer (Keegan Wells et al., 2002) was used to measure caregiving demands. The instrument consists of 28 items with which family caregivers identify 56

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both the time spent in caregiving ac tivities, and the difficulty/effort associated with these various caregiving activities. Items are scored on a 5-poi nt Likert-type scale with time broken down as none, <1 hour/week, 1-2 hours/week, 2-5 hours/week and >5 hours/week. Effort/difficulty is also scored on a 5-point Likert -type scale including none, a sma ll amount, moderate, quite a lot and a great deal as the response choices. Indi vidual demand scores are calculated by taking the square root of the product of reported time sc ore and effort score for each item and then summing the scores for all the items. Overall sc ores are a sum of the individual calculated demand scores with a total range of 28 to 140. Higher scores estimate higher levels of demand associated with caregiving. Items for the instrument were developed thr ough a two-step process in cluding a review of literature and feedback from pediatric oncology nur ses. An expert pane l was formed of eight leading pediatric oncology nurses to assist in the initial formati on of items. The panel was used to establish content validity of the instrument. The instrument was validated by a sample of 158 primary family caregivers (153 provided complete usable data) of children being treated at one of nine participating Pediatric Oncology Group ins titutions. Internal consistency was established through the calculation of Cronbachs alpha, which was 0.93. Test-retest reliability was reported using Pearsons product-moment coefficient. A value of 0.90 was calculated following a retest interval of 3 to 7 days (Keegan Wells et al., 2002). As described earlier, there was a concerted e ffort to reduce the amount of burden placed on caregivers who agreed to part icipate in this study. For measurement of the demands of caregiving a 13 item subscale identified in the in itial development of the instrument was used rather than using the entire instrument. Like the burden subscale used from the CQOLC, the items in the demands of careg iving subscale that was used were focused primarily on the 57

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emotional impact of the family caregiver and th at of the caregivers immediate family. The items used can be found in the complete questionn aire included as appendix A. The 13 demands items are all in section 3 of the questionnaire. The Family Caregiver Medication Administration Hassles Scale The Family Caregiver Medication Administ ration Hassles Scale (Travis, Bernard, McAuley, Thornton, & Kole, 2003) is a multidim ensional measure of the hassles family caregivers face when dealing with medication administration. The FCMAHS was used to measure the second component of family caregiv er burden being measured, which was family caregivers assessment of how mu ch of a hassle it was to be responsible for administering patients medication. The complete instrument consists of 24 items that make up four subscales (information seeking/information sharing, safety issues, sche duling logistics and polypharmacy). The items within the four subscale s address areas of caregiving that are specifically tied to medications use and that cover responsib ilities that fall within th e role of the family caregiver. Along with the four subscale scores the instrument also allows for an overall score of medication administration hassles. The overall score will be used in the analysis phase for this project. Items are scored on a 6-point Likert-type scale (0=no hassles 5=worst of all hassles) and the instrument has a maximum score of 120 for th e overall hassle rating. Higher scores represent higher hassle assessment for medication administra tion. A three-phased approach was used to develop and validate the instrume nt including instrument developm ent, pilot testing and field testing/instrument evaluation. A total of 158 family caregivers provid ing medication administration support to chronically ill adult patients were recruited to help with psycho metric testing of the FCMAHS. Internal consistency reliabilities for the four subscales ranged from =0.80 to =0.92. An 58

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overall internal consistency reliability score of =0.95 was also calculated. Two-week test-retest reliabilities were calculated for each of the subscales with scores ranging from 0.78 to 0.85. The overall instrument test-retest reliability was 0.84. Construct validity was also analyzed by examining correlations of the total scale score an d subscale scores with scores on the Medication Complexity Index (MCI) and the Modified Care giver Strain Index (MCSI). Subscale scores significantly correlated with the MCI and MCSI and ranged from r=0.19 to r=0.29 and r=0.34 to r=0.40 respectively. Overall scale scores were significantly related to the MCI (r=0.19) and the MCSI (r=0.44) as well suggesting modest construct validity (Travis et al., 2003). For this study only items from the safety issues subscale were used. The items used can be found in the complete questionnaire included as appendix A. The five medication administration hassles items are all in Section 4 of the questionnaire. Appraisal of Caregiving Scale Family caregiver appraisal of stress was meas ured using the Appraisal of Caregiving Scale (Oberst 1991). The current versi on of the instrument consists of 27 items that look at family caregiver appraisal responses to five situations as sociated with caring for a sick family member. The situations covered include: 1) caregiving ta sks and responsibilities, 2) relationships and interpersonal support, 3) lifesty le, 4) emotional and physical health and 5) overall personal impact. Two types of stressful appraisal (threa t and general stressfulness) and one type of positive appraisal (benefit) are measured by the in strument making up three subscales. Family caregivers respond to each of the 27 items using a 5-point Likert-type sc ale with choices ranging from very false (1) to very true (5). Scores are calculated for each of the three types of appraisal measure. There is no overall score of appraisal. 59

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The threat appraisal subscale consists of 13 items with scores ranging from a low of 13 to a high of 65. The general stressfulness subscale is made up of eight items with scores ranging from 8 to 40. All items in this subscale are reverse scored. The fi nal subscale of benefit appraisal is made up of six item s with scores ranging from 6 to 30. For all of the subscales, higher scores correspond to higher levels of appraisal for the gi ven subscale, that is, greater levels of threat appraisal, higher levels of ge neral stressfulness and hi gher benefit appraisal. Instrument validation was established usi ng an aggregated sample of 240 family caregivers. Validation was esta blished using construc t validity and inte rnal consistency. Construct validity of the ACS subscales was es tablished by testing th eoretically generated hypotheses about the correlation between the two stressful appraisal subscale scores and a number of family caregiver and illness/care giving situation antecedents. Negative and significant relationships were found between threat appraisal and family hardiness (r=-0.36), economic status (r=-0.20) and family caregiver h ealth (r=-0.29). Results were as hypothesized with threat appraisal decreasing as family hardiness, economic status and family caregiver health improved. General stressfulness was significantly co rrelated only to family hardiness (r=-0.36). Four additional antecedents tested for signi ficant relationship with threat and general stressfulness appraisal were caregiving demands, caregiving difficulty, seriousness of illness and patient dependency. Positive and significant relationships were found between all four antecedent variables and both threat appraisal (r range = 0.13 to 0.58) and general stressfulness (r range = 0.20 to 0.35). The resu lts supported the proposed theories that as family caregiver demands, family caregiving difficulty, seriousness of illness and patient dependency get worse, the levels of negative stre ss increase (Oberst, 1991). 60

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Correlations between benefit appraisal and th e same seven antecedent variables discussed above were also calculated. In looking at these correlations there was no initial hypothesized expectations before testing the relationships. Results showed that benefit appraisal was significantly correlated only to family hardines s (r=0.25), suggesting that as family hardiness improves caregiving is viewed as more beneficial (Oberst, 1991). Reliability of the ACS was established by cal culating internal consistency (Cronbachs alpha) for each of the three subscales of the inst rument. The threat a ppraisal subscale had a Cronbachs alpha of 0.90. General stressfulness appraisal subscale had a calculated Cronbachs alpha of 0.73. The benefit appraisal subscale had an internal consistency value of 0.74 (Oberst, 1991). The focus of this study was solely on the nega tive effects of caregiving. Because of this specific focus, only the items from the threat ap praisal subscale were used to measure appraisal of stress. For a complete review of the 13 items used in th e study, the complete questionnaire can be found in Appendix A. The items for stress appraisal make up Section 5 of the questionnaire. Study Constructs Dependent and Independent Variables Listed in Table 4-2 below are th e variables that were collected in the study along with their operationalization and a source for the data. The purpose of measuring the endogenous antecedent variables, the mediating variable a nd the outcome variable are discussed in more detail below. Family Caregiver Burden Family caregiver burden is a multidimensional measure of the impact that providing caregiving has on the family caregiver. Give n and colleagues (2001) identified burden as a multidimensional biopsychosocial reaction resulting from an imbalance of care demands 61

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relative to family caregivers pe rsonal time, social roles, physical and emotional states, financial resources and formal care resources given the ot her multiple roles they fulfill. For this study burden was looked at via two different aspects, family caregiver overall demands and family caregiver hassles associated with me dication administration management. Family caregiver demands Demands of caregiving reflect the amount of difficulty and time that family caregivers must devote to taking care of thei r child with cancer. Tasks fall within a number of categories and require different levels of commitment fr om the family caregiver. Demands will be measured using The Care of My Child With Cancer instrument. Included in the instrument are demands related to physical care, emotional care, finances, family /interpersonal relationships and communication. Medication administration hassles Hassles reflect what are considered minor events that individuals apprai se as threatening to their well-being (Lazarus & Folkman, 1984). Indivi dually the threat associ ated with hassles is considered fairly weak. However as hassles begi n to accumulate over time their impact becomes more significant and their effects on an individua l become more noticeable. Medication hassles were identified by Travis and colleagues as m inor daily irritants that family caregivers experience when they assist a dependent family member with medication regimens (2003). The Family Caregiver Medication Administration Hassles Scale was used to quantify the overall measure of daily hassles in fam ily caregiving related to medication administration in this study. Stress Appraisal Oberst defined appraisal as the evaluation of potentially stressful person-environment encounter in terms of its personal meaning or si gnificance to well-being (Oberst, 1991). These potentially stressful events can be evaluated by family caregivers in to one of three categories: (1) 62

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benign no impact on well-being, (2) beneficial enhancing we ll-being and (3) stressfulnegative impact on well-being. Stressful appraisa l can then be classified as a (1) harm/loss damage has already been done, (2 ) threat potential for damage or harm and (3) challenge potential for gain or growth. The focus in this study will be solely on threat appraisal associated with caregiving for a patient with cancer. Thre at appraisal will be meas ured using the threat appraisal subscale items of the Appr aisal of Caregiving Scale. Family Caregiver Quality of Life The outcome variable for this project is the fam ily caregivers self-reported quality of life. Measurement of this outcome involved using two of the subscales of the Caregiver Quality of Life Index Cancer Scale as described in detail above. Subjects To be included in this study, participants ha d to identify themselves as the primary family caregiver for a child with cancer. A primary family caregiver, as defined for this study, is an individual who is responsible fo r assisting the patient the major ity of the time in handling both their physical and emotional needs related to thei r illness. Along with being the primary family caregiver the participant had to also meet the fo llowing inclusion criteria: 1) be the parent or legal guardian of the pe diatric (under 21 years of age) oncology patient, 2) be at least 18 years of age, and 3) be proficient in Eng lish for both reading and speaking. Procedures Following check-in at the pediatric cancer cent er infusion room, the primary investigator approached family caregivers to explain the purpose of the study. Family caregivers that met the inclusion criteria and elected to participate in the study completed a consent form and were then given a questionnaire packet to complete. A copy of the consent from is in Appendix B while the questionnaire can be found in Appendix A. Family caregivers were asked to complete the 63

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packets while in the clinic during the patient s appointment. It wa s not uncommon for the patients infusion session to last for many hours. All caregivers th at participated in the study by completing a questionnaire in full were given a P ublix $20 gift card as a sign of thanks. If more than one caregiver was present and identified themselves as sharing in the caregiving responsibilities, then both family car egivers were allowed to participate and were included in the study sample. Each family caregiver filled out their own survey. Questionnaire packets were manually, numerically stamped with random numbers allowing all item results, could be combined late r on should they become separated. It also helped to identify which consent form went with which questionnaire. A list identifying family caregiver to questionnaire packet was kept in a separate comput er database that was password protected. Only the primary invest igator had access to the list. Data from the survey were all entered in to a Microsoft Excel spreadsheet that was password protected and then stored on a networke d computer within the University Of Florida College Of Pharmacy. This spreadsheet had a sepa rate login that only the primary investigator had access to. Statistical Analysis Basic descriptive statistics were run for all variables to establish means and standard deviations for variables measured on conti nuous scales and frequencies for categorically measured variables. The focus then shifted to establishing reliability and validity of the CQOLC for use in a pediatric oncology setting to go along with the content validation already carried out. Following the tests for validity and reliability the fo cus of the statistical analyses then shifts to looking at how the data fit the proposed model of family caregiver quality of life through a path analysis procedure based on the works of Baron and Kenny (1986). 64

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Internal Consistency Reliability To meet objective one of this study, we first es tablished the internal consistency reliability score for the overall score of the CQOLC. Th e reliabilities of the two subscales of the instrument were also extablished. We also ran item-total statistics to determine if the instrument would perform better by removing items identified in the analysis that were potentially reducing the overall reliability. Convergent Validity The second step to confirm the validity of th e instrument was to run convergent validity tests to see how well the CQOLC correlated with the other three main instruments used to measure caregiving demands (CMCC), medicati on administration hassles (FCMAHS) and stress appraisal (ACS). Pearsons correlations were ru n during this phase of th e validation process to look for convergence. Path Analysis and Mediation Testing Meeting objective two of this st udy was a four step process th at occurred in two separate phases. Tests of association The first phase of this proce ss involved establishing the rela tionships between each of the demographic variables (for patients, caregiver and the disease) and the family caregiver quality of life assessment via either point bi-serial correlations or Pears on correlations for most of the analyses. Analysis of variance was used to l ook for relationships between family caregiver QOL and education level, income a nd ethnicity. This was done since these three variables were all measured using multiple categories rather than tw o. This phase was done to identify which of the demographic variables were significantly rela ted to family caregiver quality of life in an 65

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effort not to flood the path analysis regression s with variables that were not related to the outcome. Only variables that were signifi cant were to be included in the final steps of the process. As outlined in the next chapter none of the va riables were significantly related to family caregiver QOL and therefore were not included in any further analysis. Path analysis The second phase of the process to meet obj ective two involved a th ree-step multistage regression analysis based on the work of Baron and Kenny (1986). These regressions served two main functions. The first was to determine the path coefficients for the final model enabling us to show how each of the variables influenced family caregiver QOL. The second purpose for these regressions was to determine whether or not the model was a fully mediated model with the effects of demands and hassles on family caregiv er QOL passing through stress appraisal. All data analyses were conducted using SPSS ve rsion 15.0 for Windows (6 Sep 2006). Attempting to establish that the model was fully mediated the following hypotheses were tested: H1. Regressing stress appraisal on bot h caregiving demands and medication administration hassles will result in both demands and hassles contributing significantly to stress appraisal. H2. Regressing family caregiver qualit y of life on both caregiving demands and medication administration hassles will result in both demands and hassles contributing significantly to family caregiver quality of life. H3. Regressing family caregiver qualit y of life on caregivin g demands, medication administration hassles and stress appraisa l will result in only stress appraisal contributing significantly to family caregiver quality of life. The first regression equation r un was to test Hypothesis 1 th at demands of caregiving (X1) and hassles of medication administration (X2) which were the indepe ndent variables had a significant effect on stress appraisal (Y1), the mediator variable: E(Y1) = 1X1 + 2X2 66

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The second regression, which tested Hypothesi s 2, looked at whether or not demands of caregiving (X1) and hassles of medi cation administration (X2) had a significant effect on family caregiver quality of life (Y2), the dependant variable: E(Y2) = 2X1 + 2X2 The final regression that tested Hypothesis 3 looked at the e ffects of demands of caregiving (X1), hassles of medication administration (X2) and stress appraisal (X3) on family caregiver quality of life (Y2): E(Y2) = 3X1 + 3X2 + 3X3 Once all the models were run the signifi cant standardized Beta coefficients ( 0.05) from the first and third model were plugge d into the depiction of the theo retical model to look at direct and indirect effects of all the variables in the model to better understand the influence of each of the variables on family caregiver quality of life. The initial model proposed is represented by figure 4-1. The direct effects are the standardized Beta coe fficients, while the indire ct effects had to be calculated. Based on the final model, indirect effects were calculated only for demands of caregiving and hassles of medication administ ration. This calculation was done by multiplying the direct effect coefficients of demands or hass les respectively on stress to the direct effect coefficient of stress on family caregiver quality of life. Once the direct and indirect effects of the vari ables were calculated, th e total effect of each of the three variables on family caregiver quali ty of life was determined. For demands and hassles, total effect was the sum of the direct eff ect plus the product of all the indirect effects for each variable. Total effect for stress appraisal was strictly the direct effect coefficient to family caregiver quality of life. 67

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Along with determining the effects of the inde pendent variable and mediating variable on family caregiver quality of life, the three regressions also assisted in establishing whether or not the final model was fully mediat ed or partially mediated. A mediated model would meet the following conditions to show full mediation. First, the independent variables in equa tion one listed above would have an effect on the mediator variable. In the second equati on listed, the two indepe ndent variables would have an effect on the dependent variable. Finally for the third eq uation listed the mediating variable would have an effect on the dependent variable while the ef fects of the two independent variables would no longer be present (Baron and Kenny, 1986). Sample Size In order to establish an appropriate sample size required for this study a number of sample size estimates were calculated us ing value estimates from previ ous studies based on a cognitive appraisal model of stress. The calculations were done using NCSS and PASS (2004, Number Cruncher Statistical Systems). To determine sample size requirements, estimates for total variance (R2) of the final model ranged from 0.4 to 0.9. A conservative alpha value of 0.01 was used along with a beta estimate of 0.2 (equating to a power level of 0.8). At a minimum there will be three independent variables (the mediator and both of the endogeno us antecedents) in the final model predicting family caregiver quality of life. Estimates of sample size for a model with three independent variables ranged from 30 for a low R2 of 0.4 to 13 for a high R2 of 0.7. At a maximum, the final predictive model for family caregiver quality of life will contain 12 independent variables (the mediator and all antecedent variables). Estim ates for sample sizes using 12 independent variables ranged from 50 for a low R2 of 0.4 to 26 for a high R2 of 0.7. Based on these estimates 68

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a sample of 50 family caregivers will be used for this study. This size sample should allow for sufficient power in both reduced and full predicti ve models while not being overly powerful. Table 4-1. List of items from the original CQOLC that were amended to fit the target population of family caregivers of pediatric oncology patients. Original CQOLC items Reworded items for the pediatric oncology setting I worry about the impact my loved ones illness has had on my children or other family members I worry about the effect of this illness on my other children I fear the adverse effects of treatment on my loved one I am worried about the harmful effects of the treatments on my child/infant It upsets me to see my loved one deteriorate It upsets me to see my child/infant get sicker I fear my loved one will die I am frightened my child/infant will die Table 4-2. Study constructs and sources for data collection. Exogenous Antecedent Variables Operational Definition Source of Data Patient Characteristics: Gender Female=1 Male=0 Patient Chart Age Age in months Patient Chart Illness Characteristics: Number of medications Total number of prescription medications currently being taken Patient Chart Time since diagnosis Number of months since diagnosis Patient Chart Family Caregiver Characteristics: Gender Female=1 Male=0 Caregiver Age Age in Years Caregiver Marital Status Married = 1 Not Married = 0 Caregiver Employment Status Part/Full Time=1 Unemployed=0 Caregiver Presence of Social Support Yes=1 No=0 Caregiver Ethnicity Asian/Pacific Islander=0 Caucasian=1 Black (non-Hispanic)=2 Hispanic/Latino=3 Native American=4 Refused=9 Caregiver 69

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70 Table 4-2. Continued Education Level Grade School=0 Some High School=1 High School=2 Some College=3 College Degree=4 Some Graduate School=5 Graduate School=6 Refused=9 Caregiver Relationship to patient Parent=1 Other=0 Caregiver Household Income Under $14,999=0 $15,000-$24,999=1 $25,000-$34,999=2 $35,000-$49,999=3 $50,000-$74,999=4 $75,000-$99,999=5 $100,000-$149,999=6 $150,000-$199,999=7 Over $200,000=8 Refused=9 Caregiver Endogenous Antecedent Variables Demand (Effort/Difficulty & Time) 5-point Likert-type scale (13 items) Caregiver Medication Hassles 6-point Likert-type scale (5 items) Caregiver Mediating Variable Stress Appraisal 5-point Likert-type scale (13 items) Caregiver Outcome Variable Caregiver Quality of Life 5-point Likert-type scale (13 items) Caregiver Demands of caregiving Medication administration hassles Stress appraisal Caregiver quality of life Figure 4-1. Proposed model of fa mily caregiver quality of life

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CHAPTER 5 RESULTS This chapter presents the results of the study. It presents the descrip tive characte ristics of the family caregivers that were surveyed. Descri ptive data for patient and disease characteristics are also presented. Results from the surveys items tied to the four main va riables in the cognitive appraisal of stress model will be described and finally the results tied specifically to the research hypotheses will be presented. Family Caregiver Demographics A total of 50 caregivers completed questionnaire s for this study. In all 55 caregivers were approached with five declining to participate. One caregiver dec lined to participate because she was the patients grandmother a nd did not feel comfortable answering the questions. Another caregiver began the survey but ne ver completed it. The other three who declined were part of a family unit. This equates to a response rate of 91% for all caregivers th at were approached. Demographic characteristics of the family caregivers are shown in table 5-1. Seventyeight percent of the respondents were female with a mean age for all responding of 37.82 years old (SD=9.36). The youngest caregiver was 22 wh ile the oldest was 61. Of those who responded, approximately 67% stated they were married and 51% sa id they were either working part-time or full time. Ninety-f our percent of the caregivers were the parent of the child with cancer while three (6%) of those th at filled out a questionnaire were the grandparent of the child. The family caregivers were asked whether or not there was a presence of social support for them, which was defined as family or friends assisting with caregiving duties on a consistant basis. Seventy-two percent responded that they were receivi ng social support. 71

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A breakdown of ethnic background revealed th at those who participated, 74% were Caucasian, 22% were African American and 2% we re Hispanic. One person refused to identify their ethnic background. In terms of education level, 46% of the careg ivers had an education level of high school or less. Sixty-two percent identifie d their annual household income during the previous year at less than $35,000. Coverage for the childs medical expenses inidicated, 48% relied on private insurance, 40% relied on some form of government insurance while only one caregiver said they paid for the care out of private funds. Patient and Disease Characteristics The patient and disease charac teristics were all obtained from chart reviews conducted by the primary investigator and research assistants. Chart re views could only be conducted on patients under the age of 18 for whom the caregiver could grant access to the patients chart. Patients who were at least 18 y ears old at the time their fam ily caregiver filled out their questionnaire packet were not asked for consen t and therefore data wa s not pulled from their chart. There were eight caregivers that pa rticipated whose child was 18 or older. Some of the patients (n=6) in the study had two caregivers fill out su rveys. These units were all husband and wife pairs that saw themselves as sharing in the role of primary caregiver. Data about patients who had multiple caregivers f ill out a survey was entered into the database only once. Because of the limited age restrictio ns and the fact that some patients had multiple caregivers fill out surveys, the results of the patie nt and disease characteri stics are not the same N as in the family caregiver results described abov e. For one of the patie nts we could not clearly identify their date of diagnosis so the N for tim e since diagnosis is lowe r than the other three variables presented in Table 5-2. 72

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On average the patients under 18 years of ag e who were being treate d in the cancer center and whose family caregiver participated in this study had an age of 86.64 months (approximately 7 years) (SD=51.40 month). The youngest patient be ing treated at the time was 16 months old (1 year and 4 months) while the olde st being treated for whom we collected data was 17 years and 9 months. The majority of patients (61%) that were being cared fo r and that we collected data on were boys. Looking at the disease characteristics it wa s found that it had been an average of 10.03 months (SD=8.56; range 1-34 months) since the children had been diagnosed or re-diagnosed with cancer. The average number of medications that the family caregivers were assisting the children in taking was 3.61 (SD=2.48). Some patie nts were currently taking no medications at home while one was currently on 11 different medications. Cognitive Appraisal of Stress Model Components The main components of the cognitive appraisal of stress model that were measured were, the family caregivers perceived quality of life, the level of demands associated with the caregiving role, the measure of hassles associated with administering medication to the sick child and the caregivers appraisa l of their stress level associated w ith their caregiving role. Table 5-3 outlines the results for the overall scores that were calculated for each of these components. The subsections that follow take a cl oser look at how the caregivers reacted to certain items within each of the scales used to measure the cogni tive appraisal of stress model components. Family Caregiver Quality of Life Family caregivers answered 13 items that were used to measure their current quality of life. These 13 items accounted for two (burden and fi nancial) of the four f actors associated with the original CQOLC. All items were scored on a 5 point Likert sc ale ranging from 0 (not at all) to 4 (very much). 73

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Most researchers consid er a Cronbachs alpha ( ) value of at least 0.70 to suggest reliability of the instrument therefore that is wh at we set as the criterion with the instruments used in this study. With regards to the CQOL C, the overall instrument had an alpha of 0.86 which suggested strong reliability. The subscal e data produced alpha values of 0.85 for the burden component and 0.77 for the financial com ponent indicating that the subscales also demonstrated good reliability. The results for th e CQOLC reliability will be discussed in more detail later in the chapter. Table 5-4 shows the results for each item on the modified CQOLC and includes the mean, standard deviation and median. The average family caregiver had an estimat ed quality of life score of 31.04 (SD = 10.43). The maximum score possible was 52 (0 was the lowest score possible) with higher scores suggesting a better quality of life. The lowest sc ore recorded for this group of caregivers was a five, suggesting that this caregiver had low reported quality of life. A closer look at the individual items revealed three items that appeared to have the most impact on reducing the family caregivers overall qua lity of life. Indivi dual items were reverse coded when the overall quality of life score was calculated. This was not done when looking at the items individually, therefore, higher scores on the individual items suggest a lower quality of life. The item that had the most negative contri bution to quality of life scores was It upsets me to see my child/infant get sicker. The averag e score for this item was 2.90 (SD = 1.34). Nearly 50% of the caregivers surveyed rated this item as a 4 (very much true) on the 0 to 4 Likert-type scale used. The next item that seemed to have the grea test impact on reducing a caregivers quality of life was I am worried about the harmful effects of the treatm ent on my child. The average 74

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score for this item was 2.42 (SD = 1.18). More than a quarter of the caregivers felt this statement was very much true. Both of these items were part of the burden factor from Weitzners original CQOL factor analysis. In terms of the financial fact or, only one item appeared to stand out from the other two with regards to having a negative impact on the family caregivers quality of life. Caregivers reported an average score of 1.94 for the item I am under financial stra in, with 36% feeling this item was quite a bit true or very much tr ue when they thought about the impact of their caregiving role over the past seven days. On the opposite side of the spectrum, one item stood out among the others as the one having the least negative impact on the family car egivers quality of life and that was I am discouraged about the future. The average score for this item was only 0.94 (SD = 0.98). Eighty percent felt that this item was only a little bit true or not at all true. Demands of Caregiving The reliability results showed th at the instrument had strong re liability with an alpha value of 0.84. The average score report ed by the family caregivers in terms of how demanding they felt it was to handle some of the activities tied to their caregiving role was 37.37 (SD = 9.71). The lowest score reported was 16.90 while the highe st assessment of demands was 54.69. All of the 13 items included from the original instrume nt, The Care of My Child with Cancer, were scored on a 5-point Likert-type scale. For each activity the family caregivers scored both the time they took to complete each activity (1 = did not do, 5 = >5 hours/week) and how much effort/difficultly was tied to completing the task (1 = none, 5 = a great deal ). The instrument had a range of possible scores from 13 to 65 with higher scores suggesting the demands of caregiving to be more time consuming and difficult. 75

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Table 5-5 contains the indivi dual item results for the Care of My Child with Cancer demands instrument. Results listed include the mean, standard deviation and median score for each item. Tables 5-6 and 5-7 contain the means, standard deviations and medians for the time and effort/difficulty component of each item on the instrument respectively. A closer look at individual item scores showed three caregiving activities that were rated in the moderate range of demanding. The most demanding task was providing emotional support for your child with cancer, which had an average score of 3.34 (SD = 1.19). Just over 50% of the caregivers stated they spent more than 5 hours a week providing emotional support to their child. Seventy-two percent saw the task to be at least moderately difficult to a great deal difficult. The other two demanding tasks were p lanning activities for your child around the treatment and illness and taking care of discipline and/or behavior problems of the child with cancer. They each had overall means of 3.30 (SD = 1.30) and 3.02 (SD = 1.42) respectively. The time commitments for each activity were fairly high with 68% of the caregivers spending more than 2 hours a week planning activities fo r their child, while 48% spend the same amount of time taking care of discipline of their child. In terms of the difficulty completing each task, 64% found planning activities to be at least moderately difficult while 56% found discipline to be at least moderately demanding. The least demanding task of all those sc ored was communicating information about cancer to schools, day care, babysitters, extended fa mily and friends. On average this activity had a total demand score of 2.16 (SD = 1.31). Othe r tasks that were viewed as only slightly demanding included getting information on your childs illness and treatment, 2.34 (SD = 1.17) and providing emotional support for your spouse/partner, 2.38 (SD = 1.31). 76

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Hassles of Medication Administration For this study, only the items from the safety issues subscale of the Family Caregiver Medication Administration Hassles S cale were used to measure hassles. Reliability results tested produced an alpha value of 0.78 which suggested that the instrument measuring medication administration hassles had strong reliability. Th e overall average for the total hassles score was 3.92 (SD = 4.02). The highest score reported was 14 while almost one fourth of the caregivers had a total score of 0 suggesting medication admini stration was no hassle at all. The instrument had a possible range of scores of 0 to 25, with higher scores suggesting more hassles associated with medication administration. Table 5-8 contains the results for each item on the Family Caregiver Medication Administration Hassles Scale and includes th e mean, standard deviation and median. Details with regard to the individual items do not show much of an impact of medication administration on the caregiving role. On ever y item, between 44% and 66% of the family caregivers did not see any hassle associated with the specific task listed. Two items showed slightly higher reported scores at the upper ends of the scale. Both recognizing adverse (bad) side effects and knowing when to hold, in crease, decrease a dose or discontinue the medication had 12% of the res pondent reporting that these activities were a moderate hassle to one of the worst hassles of all. The other three items measur ed showed only between 4% and 6% of the respondents in this hi gh range of scoring medication ad ministrative activities as being a hassle. Appraisal of Caregiving The final instrument used was the threat subscale of the Appraisal of Caregiving. Like the other instruments used testing was also done for the Appraisal of Caregiving items to establish the reliability of the instrument. The results for th is test like the others before suggested that the 77

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instrument did in fact show high reliability ( = 0.93). The 13 items in this subscale had a total mean score of 28.26 (SD = 12.33). The scale had a potential range of scores between 13 and 65. The lowest score recorded from this sample was 13 while the person with the highest perception of their caregiving role as threatening had a score of 56. Higher scores indicated a higher level of stress appraisal for the family caregiver. Table 5-9 contains the results for each item on the Appraisal of Care giving and includes the mean, standard deviation and median. The item that had the biggest impact on the care givers perceived stress was I feel a sense of loss at not being able to m eet all my responsibilities. The item carried an average score of 2.64 (SD = 1.38). Just over a quarter of the caregive rs felt that for them this statement was more true than false or very true. Another item that indicated higher levels of perceived stress was Im concerned that this situation will cause financial hardship for me in the future. The mean score was 2.48 (SD = 1.51). For this item 28% of the car egivers indicated that this stat ement was more true than false or very true. Looking at the frequencies for each response option, this item had the highest number of caregivers (n=8) indi cate that this statement was a ppraised as very true. Two items also had just over a quarter of the caregivers agree that they were more true than false or very true. The two items were T his situation threatens to overwhelm me and Im afraid my own physical health will begin to suffer. One other significant item was Im afraid that in the future I wont have the energy and endurance I have now. While the average scor e was not high, 2.30 (SD = 1.49), this particular item had the second highest frequency of responses (n=7) in terms of appraising the situation as very true. 78

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The item that appeared to have the smallest impact on overall stress a ppraisal was I worry that I wont be able to help th e person needing my care in the future. The average score was 1.70 (SD = 1.22) and 82% of the caregivers saw this it em as either more false than true or very false. Psychometric Properties of the CQOLC The first objective of this study was to establis h the reliability and validity of the modified CQOLC in a population of family caregivers of children with cancer to measure overall caregiver quality of life. The following sections will describe the results of these analyses. Internal Consistency Reliability The overall instrument had a Cronbachs al pha of 0.86. Looking at the subscales, the burden subscale (items 1, 2, 3, 4, 5, 7, 8, 9, 10 and 11) had a Cronbachs alpha of 0.85. The Cronbachs alpha for the financial concerns subs cale (items 6, 12 and 13) was calculated at 0.77. Item-total statistics were revi ewed for the complete scale and no items were identified as improving the instrument should they be removed. Table 5-10 contains the Cronbach s alphas calculated for this study and also the results from the initial Cronbachs alpha calculations that Weitzner and colle agues (1999a) calculated during the initial instrument deve lopment. The table shows the consistency in scores between the original data that Weitzner reported and what was found in this newly tested population of family caregivers of children with cancer. Convergent Validation The second step to confirm the validity of th e instrument was to run convergent validity tests to see how well the CQOLC correlated with the other three main instruments used to measure caregiving demands (CMCC), medicati on administration hassles (FCMAHS) and stress 79

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appraisal (ACS). Pearsons correlations were ru n during this phase of th e validation process to look for convergence. The correlation between the modified CQOLC and The Care of My Child With Cancer (measuring level of caregiving demands) was -0.61 (p 0.01). The Pearson correlation between the modified CQOLC and the Appraisal of Care giving (measuring level of threat) was -0.82 (p 0.01) which as expected was highl y negative and significant. The calculated Pearson correlation between the modified CQOLC and the Family Caregiver Medication Administration Hassles Scal e was -0.43 (p = 0.01). While the result was significant it is only moderately negative. Evaluation of the Cognitiv e Appraisal of Stress Model The goals of the next sections are to look at the results that focused on the research questions 2 through 6. These questions examine how well the data fit the predicted model. Evaluating CQOLC Correlations Before delving into how well the data collected fit the proposed model we first tested for relationships between the total CQOLC scores and the variables related to patient, caregiver and disease characteristics. The purpose of this step was to identify which of these factors had a significant relationship with the fa mily caregivers quality of life so that those variables could then be included in the final model testing. The results from the analyses are included in Table 5-11. A look at the data shows that none of the variables tested had a significant relationship with th e family caregivers quality of life and therefore none of them were include d in the testing of the final model. Stress Regressed on Demands and Hassles Hypothesis 1 As outlined in the methods section three separa te regressions were run to establish whether or not the proposed mediated model was supported a nd to also establish the path coefficients for 80

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the final model. The first equation involved regressing the mediator (stress) on the two independent variables (demands a nd hassles) to confirm if they were related. The results of the analysis show that demands and hassles accounted for 51% of the variance in stress appraisal. Both independent variables made significant contri butions to the regression which offers support for Hypothesis 1. The path coefficients for the regression are in Table 512. These coefficients will be used in the final path model. Quality of Life Regressed on De mands and Hassles Hypothesis 2 The second equation tested saw the family caregivers quality of life being regressed on both demands and hassles. This step allowed fo r us to determine if a significant relationship existed between the dependent variable and the tw o independent variables. The analysis showed that the two independent variables accounted for 47% of the varian ce in quality of life. Both variables contributed significantly to the regression which offe rs support to Hypothesis 2. The path coefficients from this re gression can be found in Table 5-13. Quality of Life Regressed on Demands Hassles and Stress Hypothesis 3 The third equation that was run was to establ ish how much variance in quality of life was accounted for by demands, hassles and stress. H ypothesis 3 suggested that while the regression equation would be significant, on ly stress would have a signifi cant influence on quality of life since it was hypothesized that it would fully me diate the effects of demands and hassles. Overall, the three variables accounted for 71% of the variance in quality of life. As predicted, stress contributed significan tly to the regression and hassles did not. Demands of caregiving also cont ributed significantly to the regr ession which was not predicted. These results suggest that instead of a fully mediated model through stress, that the model is only partially mediated with demands having some direct effect on quality of life along with stress. These results fail to provide support for Hypothesis 3. The path coefficients from this regression 81

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can be found in Table 5-14. The coefficient for st ress and demands are used in the final path model. Construction of the Final Model The final step in this project was to put t ogether the final Cognitive Appraisal Model of Stress based on the data collected. Figure 5-1 is the revised model based on the shift in results from a fully mediated model to a partially me diated model. The figure contains the path coefficients to show the impact of the variables within the model. Decomposition of the di rect and indirect effects: To better understa nd the influence of each of the variables on family caregiver quality of life we t ook a closer look at the direct, indirect and total effect s of the variables. Medication admi nistration hassles had a significant indirect effect on family caregiver qu ality of life via appraisal of stress ( =-0.332) as hypothesized. Demands of caregiving had a fairly large total effect on fa mily caregiver quality of life but nearly 60% of that eff ect was indirect via appraisal of stress. As expected the direct effect of appraisal of stress was significant and largest in the model. The results all suggest that quality of life is negatively affected as family caregivers see higher levels of demands, hassles and stress associated with caregiving. Table 5-15 contains the decomposition of the three predictor variables with quality of life. Summary of Results This chapter presented the results of the valid ation of the modified Caregiver Quality of Life Index Cancer as a measure of family caregiver quality of life in a pediatric oncology setting. Also presented in the chapter was a test of the fit of the cogni tive appraisal model of stress to predict family caregiver quality of life. The analysis of the modified CQOLC indicated that it is a valid instrument for measuring family caregiver quality of life in caregivers of pe diatric patients. The inte rnal consistency of the 82

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instrument ( = 0.86) and the subscales ( = 0.85 and = 0.77) were all high suggesting that the instrument and the subscales were reliably measuring the constructs. Convergent validity testing suggested that the modified C QOLC had, as expected, a significan t negative relationship with both the demands of caregiving and the stress associ ated with caregiving. Hypotheses 2a and 2c were also supported with the correlations between the modified CQOLC and the measures of demands and stress appraisal being highly nega tive and significant. When looking at the relationship of the modified CQOLC and the hass les associated with medication management the results were not as expected as the correlation between the modified CQOLC and the measure of medication administration hassles was only moderately negative although significant. None of the variables related to patient, caregiver or disease characteristics was significantly correlated to family caregiver quality of life so none of these variable s was included in the final model test. The analyses confir med that medication administration hassles and demands of caregiving were signi ficantly related to both stress a ppraisal and family caregiver quality of life which supported both Hypotheses 1 and 2. Hypothesi s 3 had predicted that when the independent and mediating variable were all regressed on family careg iver quality of life, only stress appraisal would significantly contri bute to the regression. The results however showed that not only did stress appraisal significantly contribute but demands of caregiving also had a significant direct effect. The final model ended up being modified from the projected model as the results suggested a partially mediated model through stress a ppraisal rather than a fully mediated model. Stress appraisal and demands of car egiving each had negative dire ct effects on family caregiver quality of life with stress appraisal having the largest total eff ect of the three va riables tested. Along with its direct effect, demands of caregiv ing also had a significan t indirect effect on 83

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family caregiver quality of life through stress ap praisal. The indirect effect accounted for the majority of the demands effect on quality of lif e. Medication administration hassles had only an indirect effect on family caregiver quality of life through stress appr aisal. It cont ributed the least to the prediction of family caregiver quality of life, with the lowest total effect of the three variables tested. As expected a ll three variables in the model to predict family caregiver quality of life had negative total effects. Table 5-1. Family caregiver demographics Value Percent N* Gender Female Male 39 11 78 22 50 Age (in years) Mean (SD) Median Range (low to high) 37.82 (9.36) 34 22 to 61 49 Marital Status Married Not married 32 16 66.7 33.3 48 Employment Status Part/Full Time Unemployed 25 24 51 49 49 Presence of Social Support Yes No 36 14 72 28 50 Ethnicity Caucasian African American Hispanic Refused to answer 37 11 1 1 74 22 2 2 50 Education (highest level) Grade School Some High School High School Some College College Degree Some Graduate School Graduate School 1 4 18 12 8 1 6 2 8 36 24 16 2 12 50 Relationship to the patient Parent Grandparent 47 3 94 6 50 84

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Table 5-1. Continued Value Percent N* Income Under $14,999 $15,000 $24,999 $25,000 $34,999 $35,000 $49,999 $50,000 $74,999 $100,000 $149,999 $150,000 $199,999 Over $200,000 9 10 12 3 7 3 4 2 18 20 24 6 14 6 8 4 50 Primary Medical Expense Coverage Private Insurance Government Insurance Personal Finances Personal & Government Government & Private 24 20 1 2 3 48 40 2 4 6 50 *Not all subjects answered every demographic item on the survey accounting for differences in N. Table 5-2 Patient and disease characteristics Value N* Patient Age (in months) Mean (SD) Median Range (low to high) 86.64 (51.40) 61.5 16 to 213 36 Number of Medications (home use) Mean (SD) Median Range (low to high) 3.61 (2.48) 3.00 0 to 11 36 Time since diagnosis (in months) Mean (SD) Median Range (low to high) 10.03 (8.56) 6 1 to 34 35 *Family caregivers could not consent for all the patients and time since diagnosis for one patient could not be identified so the patient N is lower than the family caregiver N. 85

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Table 5-3. Caregiver perceptions on the primar y components of the cognitive appraisal of stress model. Scale Mean SD Range N = 50 Quality of life 31.04 10.43 5 49 Demands 37.37 9.71 16.90 54.69 Hassles 3.92 4.02 0 14 Stress 28.26 12.33 13 56 Table 5-4. Mean, standard deviation, and median score for each item on the modified CQOLC. Higher scores suggest a lower quality of life. All items range from 0 to 4. Item* Mean SD Median I feel nervous 1.36 1.10 1.00 Increased stress and worries 1.56 1.42 1.50 I feel sad 1.24 1.21 1.00 Discouraged about the future 0.94 0.98 1.00 I feel frustrated 1.54 1.42 1.00 Under financial strain 1.94 1.43 2.00 Worry about other children 1.86 1.44 2.00 Harmful effects on child 2.42 1.18 2.00 Upset to see child sicker 2.90 1.34 3.00 I feel guilty 1.12 1.21 1.00 Frightened child will die 1.46 1.42 1.00 Concerned about insurance 1.18 1.41 1.00 Economic future uncertain 1.44 1.34 1.00 *Exact item wording can be found in appendix A 4=very much 3=quite a bit 2=somewh at 1=a little bit 0=not at all 86

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Table 5-5. Mean, standard deviation, and median score for the total demand score of each item ((effort time)1/2) on The Care of My Child With Cancer. Higher scores suggest higher demands. Item scores ranged from 1 to 5. Item* Mean SD Median Emotional support for child w/ cancer 3.34 1.19 4.00 Emotional support for other children 2.70 1.25 2.50 Emotional support for extended family 2.38 1.31 2.00 Emotional support for spouse/partner 2.68 1.49 2.00 Meeting own emotional needs 2.46 1.20 2.00 Comforting child through pain 2.90 1.39 3.00 Planning activities for child with cancer 3.30 1.30 3.50 Planning activities for your family 2.92 1.31 3.00 Communicating information about cancer 2.16 0.98 2.00 Watching for and reporting symptoms 2.58 1.20 2.00 Getting information on illness 2.34 1.17 2.00 Discipline and behavior problems 3.02 1.42 3.00 Finances, bills and forms 2.70 1.23 3.00 *Exact item wording can be found in appendix A Table 5-6. Mean, standard deviation, and median score for the time com ponent of each item on The Care of My Child With Cancer. Hi gher scores suggest higher demands. Item scores ranged from 1 to 5. Item* Mean SD Median Emotional support for child w/ cancer 4.08 1.18 5.00 Emotional support for other children 3.16 1.42 3.00 Emotional support for extended family 2.80 1.40 3.00 Emotional support for spouse/partner 3.16 1.50 3.00 Meeting own emotional needs 2.56 1.37 2.00 Comforting child through pain 3.28 1.50 3.50 Planning activities for child with cancer 3.84 1.38 4.00 Planning activities for your family 3.26 1.38 3.00 Communicating information about cancer 2.58 1.25 2.00 Watching for and reporting symptoms 3.10 1.36 3.00 Getting information on illness 2.72 1.36 2.00 Discipline and behavior problems 3.42 1.57 3.00 Finances, bills and forms 3.04 1.40 3.00 *Exact item wording can be found in appendix A 87

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Table 5-7. Mean, standard deviation and median score for the effort/difficulty component of each item on The Care of My Child With Cancer. Higher scores suggest higher demands. Item scores ranged from 1 to 5. Item* Mean SD Median Emotional support for child w/ cancer 3.10 1.23 3.00 Emotional support for other children 2.66 1.29 2.50 Emotional support for extended family 2.38 1.31 2.00 Emotional support for spouse/partner 2.60 1.53 2.00 Meeting own emotional needs 2.68 1.33 3.00 Comforting child through pain 2.86 1.43 3.00 Planning activities for child with cancer 3.12 1.47 3.00 Planning activities for your family 3.00 1.41 3.00 Communicating information about cancer 2.08 0.99 2.00 Watching for and reporting symptoms 2.50 1.28 2.00 Getting information on illness 2.40 1.28 2.00 Discipline and behavior problems 3.00 1.47 3.00 Finances, bills and forms 2.74 1.38 3.00 *Exact item wording can be found in appendix A Table 5-8. Mean, standard deviation and median for each item on Family Caregiver Medication Administration Hassles Scale. Item* Mean SD Median Admitting made a mistake 0.56 0.93 0.00 Knowing about medication 0.84 1.18 0.00 Understanding medications 0.66 0.96 0.00 Recognizing adverse effects 1.16 1.41 1.00 Giving medication safely 0.70 0.93 0.00 *Exact item wording can be found in appendix A Table 5-9. Mean, standard deviation and medi an score for each item on the Appraisal of Caregiving instrument. Item* Mean SD Median Things going to get worse 2.06 1.19 2.00 Havent been doing well 2.22 1.06 2.00 Feel sense of loss 2.64 1.38 3.00 Worry Ill give up things 2.12 1.27 2.00 Wont have energy in the future 2.30 1.49 2.00 No longer anything I can do 1.94 1.28 1.00 Situation threatens to overwhelm me 2.50 1.27 2.00 Afraid my physical health will suffer 2.34 1.41 2.00 Worry less able to do things 1.94 1.17 1.00 Worry I wont be able to help 1.70 1.22 1.00 Worry emotional health will suffer 2.22 1.28 2.00 Concerned about financial hardship 2.48 1.52 2.00 Not sure can handle in the future 1.80 1.07 1.00 *Exact item wording can be found in appendix A 88

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Table 5-10. Cronbachs alpha result s for this study and the origin al instrument development and validation by Weitzner et al. Number of Items Cronbachs Alpha Modified CQOLC Burden Financial Concerns Total 10 3 13 0.85 0.77 0.86 Initial Weitzner Instrument Validation Burden Financial Concerns Total 10 3 35 0.89 0.81 0.90 Table 5-11. Correlations and p values among fam ily caregiver quality of life and the patient, caregiver and disease characteristics. Correlation with Quality of life Caregiver Characteristics: Gender -0.021 (p=0.88) Marital Status 0.201 (p=0.17) Age 0.004 (p=0.98) Employment Status 0.022 (p=0.88) Social Support 0.257 (p=.07) Race -0.179 (p=0.21) Education Level 0.085 (p=0.56) Relationship to patient 0.219 (p=0.13) Income 0.118 (p=0.42) Patient Characteristics: Gender 0.287 (p=0.9) Age -0.161 (p=0.35) Disease Characteristics: Time since diagnosis 0.168 (p=0.34) Number of medications 0 .033 (p=0.85) Table 5-12. Path coeffi cients for Hypothesis 1 Regression Coefficients Predictors Unstandardized (SE) Standardized Significance R2 N Demands 0.576 (0.132) 0.453 0.000 0.509 50 Hassles 1.433 (0.320) 0.467 0.000 89

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Table 5-13. Path coefficients for Hypothesis 2 Regression Coefficients Predictors Unstandardized (SE) Standardized Significance R2 N Demands -0.580 (0.117) -0.540 0.000 0.509 50 Hassles -0.833 (0.283) -0.321 0.005 Table 5-14. Path coeffici ents for Hypothesis 3 Regression Coefficients Predictors Unstandardized (SE) Standardized Significance R2 N Demands -0.233 (0.103) -0.217 0.027 0.713 50 Hassles 0.30 (0.250) 0.011 0.906 Stress -0.602 (0.095) -0.712 0.000 = -0.217 (p = 0.027) = 0.467 (p < 0.001) = 0.453 (p < 0.001) Demands of caregiving Medication administration hassles Quality of life Appraisal of stress = -0.712 (p < 0.001) Figure 5-1. Summary of path model of family caregiver quality of life. 90

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91 Table 5-15. Decomposition of the to tal associations of predictor variables with quality of life Predictor Variable Quality of Life Medication Administration Hassles Direct Effect Indirect Effect via Appraisal of Stress Total Effect ---0.332* -0.332* Demands of Caregiving Direct Effect Indirect Effect via Appraisal of Stress Total Effect -0.217 ** -0.322* -0.540** Appraisal of Stress Direct Effect -0.712 p < 0.001 **p = 0.027

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CHAPTER 6 DISCUSSION Overview This study had two main objectives. The first was to establish the re liability and validity of using the Caregiver Quality of Life Index-Cancer to measure the quality of life in family caregivers of children with cancer. The second ob jective was to then test a cognitive appraisal model of stress in this same population of family caregivers in order to identify factors that influence their quality of life. Specific focu s was placed on how demand s of caregiving, hassles of medication administration and th e appraisal of stress related to caregiving affect the family caregivers quality of lif e. This chapter provides a disc ussion of the study findings, addresses limitations of the study, suggests implications fo r health care providers and concludes with recommendations for future research. Discussion of Findings Psychometric Testing of the CQOLC Establishing reliability and validity in using the CQOLC to measure the quality of life of family caregivers of children with cancer was ascertained through vari ous techniques. The results from the internal consistency reliability calculations suggested that the items in the instrument were measuring not only their respect ive domains but together were measuring the family caregiver quality of life construct. The overall item s along with the two subscales all met the apriori value of Cronbachs alpha of great er than 0.70. While the results suggested high reliability in the measures they were not so high as to suggest that the items were redundant in what they were measuring. Convergent validity was estab lished between the CQOLC and the demands of caregiving, hassles of medication administrati on and stress appraisal. All the results s uggested significant 92

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negative relationships between the family caregive rs quality of life and th e other three variables measured. As the caregivers saw increases in th eir demands of caregiving, the hassles associated with medication administration and their level of stress associated with caregiving, they saw a decline in their perceived quality of life. The results from reliability and validity testing were not unexpected based on the previous studies that have used or adapted the CQOLC and shown it to be a reliable instrument (Weitzner, et al., 1991ab; Boling, Macrina, & Clancy, 2003;Rhee et a., 2005). Caregiver Quality of Life Overall the family caregivers th at participated in this study appeared to have a slightly more positive perception of their quality of life. The median score for all caregivers was 31 which was just above the mid-point in the overall range of 0 to 52. Looking at the midpoint in the range of possible scores shows that 28% of the caregivers had a neutral or negative perception of their quality of life while the remaining 72% had a more positive leaning perception. The items that contributed most to a lower pe rceived quality of life were not surprising when considering the patient popula tion. Three of the four items th at most contributed to lower quality of life were all focused on the child rece iving treatment or the car egivers other children and not on the caregivers themselves. These item s included the statements, I am worried about the harmful effects of the treatments on my child/infant, It upsets me to see my child/infant get sicker, and I worry about the effect of this illness on my other children. The only item focused on the caregiver was their concern that they were under financial strain. Parents will generally do what they can to put their childrens needs before their own and that is likely why the responses ended up as they did with 3 of the 4 most impactful items focused on the child/children and not on the caregive r. One item that did not score higher, that 93

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was somewhat surprising when the results were reviewed, was the minimal impact that the statement I am frightened my child/infant will die had on the family caregiver quality of life. A number of factors contributing to this could include the possibility that the caregivers did not want to admit to such a negativ e thought. And that the caregiv ers had been properly educated about the improved treatments for children and the rise in surviv al rates due to these improved treatments. Demands of Caregiving Family caregivers of children with cancer face many demands in providing support to their child, their family and themselves during their child s illness. Overall the caregivers who were participants in this project per ceived their level of demands to be somewhat high with an average score of 37.37 and a median score of 38.52 out of a possible score of 65. Assuming moderate demand levels around 32 to 33 then almost 68% of the participants had a high leaning perception of the amount of time and effort they put in to the activities surroundi ng their childs care. The most demanding activity (combined effort and time commitment) reported, providing emotional support for yo ur child with cancer, was al so the one activity focused squarely on providing a level of car e to the child. As with the highest ranking quality of life items being focused on the patient, this item for demands was also the most patient centric. These results mirror the original testing of the instrument by Keegan Wells and colleagues (2002) when their test of the complete 28 item in strument revealed that their test population of family caregivers of children with cancer also identified providing emotional support for your child with cancer as the most demanding task they faced. It also turns out that providing emotional support to the child with cancer ende d up being the item that required the largest time commitment for our study participants, with an average commitment of at least two to five hours 94

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a week with 50% of the family caregivers saying they spent over five hours a week on this one activity. When it came to task difficulty in terms of co mpleting the activity, the task that required the most effort turned out to be planning activities for your child with cancer around the treatment and illness. This was actually witnessed firsthand on numerous occasions while conducting surveys, as the family caregivers were constantly worki ng with the staff to identify what activities the children could or could not do based on where they were in their treatment cycle. Common activities like swimming in a pool or going back to school were questioned, along with more complex activities like when to begin planning for a family vacation so as not to interfere with the patients treatment schedule. Medication Administration Hassles When it came to assessing the family careg ivers hassles associated with medication administration, the results were unexpected. It was anticipated based on previous research with regard to medications and pain management for children with cancer that in fact dealing with medications would be more difficult than the resu lts suggested. Overall th e level of hassles was very low with an average score of just under 4 for a scale that ranged from a low of 0 for no hassles to a high of 25 being considered very much a hassle. Individual items were considered not a hassl e at all by the major ity of caregivers. However, every item was viewed as at least a seve re hassle, if not one of the worst of all hassles, by one or more of the caregivers. Because th e focus of these items was on the safety of medication administration it was encouraging that overall most found these item not a hassle. At least one caregiver found it a severe hassle to admit to their physician or others that a mistake had been made in medication administ ration. Another caregive r considered knowing when to hold, increase, decrease a dose or discontinue a medication to be one of the worst 95

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hassles of all. Finally, four of the caregivers interviewed cate gorized recognizing adverse effects of medications as a severe hassle or one of the wo rst of all hassles. All three of these examples suggest a need to reevaluate th e education that caregivers are being provided with regards to medication administration. Stress Appraisal The caregivers interviewed perceived their leve l of stress to be moderate to low with approximately 80% of the caregiv ers at or below the midpoint ( 39) of the overall range of possible scores (13-65). These data suggest that while the caregive rs did identify that there are some significant demands and hassles that they face in their roles as family caregiver they were not viewed as necessarily threat ening to the family caregivers. Additionally, the results suggest that the caregivers perceived thei r ability to handle these demands and hassles as satisfactory. While overall the caregivers percei ved little stress associated w ith their caregiving duties, a closer look at the items, shows that in fact for every item measur ed there were family caregivers that categorized the items as more true than false or very true. These suggest that some family caregivers saw each item as being very stressful which in turn suggests that they were having some difficulty handling some of the demands an d/or hassles they were facing. Of the 13 items measured, 25% of family caregiver s indicated that four of the items were highly stressful. The item indicating the most family caregivers stress was Im concerned that this situation will cause financial hardship for me in the future. Family Caregivers The response rate for this study was just ove r 90% which is fairly high when compared with other studies that looked at family caregivers of pediatric patients (Fedewa & Oberst, 1996; Yamazaki, Sokejima, Mizoue, Eboshida & Fukuhara, 2005) both of which had response rates of around 60%. While it was suggested by health ca re providers working within the Pediatric 96

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Oncology Department at Shands UF that a high response rate could be expected, one this high was not anticipated. A number of factors like ly contributed to such a high response rate. The first considered was that all the surveys were filled out by the family caregivers while their child was receiving treatment. No surveys we re sent home with the caregivers, so there was no chance of them forgetting to either fill out the survey or to return it once they completed it. Another factor that helped contribute to th e response rate was the support of the study by the nursing staff working in the infusion room and by the lead nurse in particular along with the child life specialist that worked with the familie s. Often they informed the family caregivers about the fact that we were there looking for indi viduals to complete surv eys for this project and by the time the family caregivers were approached to see if they wanted to participate in the study they were already versed on the project and r eady to participate. It should be noted that not all caregivers approached had be en versed by any member of the staff so that was not a sole reason for participation. Theoretical Framework The underlying assumption for the cognitive apprai sal model of stress used in this study was that as the family caregivers dealt with bo th the demands of caregiv ing and the hassles of medication administration they would periodicall y assess their situation and how they were responding to it. With this assessment they would then adapt how they were reacting to the situation and then ultimately this assessment wo uld manifest into how they perceived their quality of life to be. While the fully mediated model that was hypothe sized was not realize d, the results of the study still offered valuable insight into how the ca regivers are affected by the roles they assume during their childs care and how health care professionals could use this information to improve the lives of both the patients and their family caregivers. 97

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The total effect of administering the medicati ons to the patient on family caregiver quality of life was fully mediated through stress appraisal. The influence of the demands of caregiving had the majority of its influence on family car egiver quality of life mediated through stress appraisal with some minor direct influence on family caregiver quality of life. As predicted, stress appraisal of the caregivi ng situation had the most influen ce on family caregiver quality of life. Looking at the results, the findings suggest a num ber of things. Health care professionals need to be aware of the rising stress that fa mily caregivers may be experiencing during their childs treatment. This rise in stress is an in dication that the demands of the caregiving role and/or the administration of the patients medi cations is beginning to overwhelm the family caregivers. By catching the in crease in distress the family car egivers are experiencing early on, health care professionals can more closely work w ith the families to identify what factors are causing the most stress and to ei ther eliminate them from the family caregivers functions or provide them with education to reduce their st ress. Thereby making them more beneficial members of the childs health care team. Because of the influence of the demands of caregiving on the caregiver s quality of life it behooves health care professionals to follow-up with the family caregivers about how they are handling certain demands. While this study iden tified some of the more demanding tasks the family caregivers are dealing with in terms of time and effort (providing emotional support for the child with cancer, planning activities for th e child with cancer and comforting the child through pain) future studies may help to more clos ely pinpoint the activities that continue to be the most demanding overall. 98

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Understanding which tasks are the most demandi ng for caregivers will afford health care professionals the opportunity to provide educational materials to the family caregivers as soon as their child enters into the treatmen t cycle to better prepare them for the role they will assume. It also gives the health care professionals areas to follow-up with the family caregivers on a continual basis to see how they are handling tasks to make sure they are not being negatively impacted to the point that they no longer eff ective members of the childs health care team. Study Limitations While this study provides some valuable inform ation about the effect that caregiving has on the family caregivers of childre n with cancer the study also has some limitations that need to be taken into account when reviewing the results. Overall, this study lacks genera lizability to other caregivers of other children with cancer based on the family caregivers that filled out survey s. The protocol for this project focused only on family caregivers of children being treated in th e infusion room of the Shands Medical Plaza. This specific focus limited the different types of cancer that the patients had and also limited the primary treatment strategy to chemotherapy. In turn this could have had an effect on what types of demands, hassles and stresses these family caregivers were facing and then ultimately how they impacted their quality of life. Another limitation to consider is that the analysis implies that there is causality among the variables. While the results of the analysis sugg est that the data fit the cognitive appraisal model of stress it is important to understand that the use of path analysis does not establish true causality among the variables. A final limitation to consider is the fact th at the items used to measure the primary variables of interest were all s ubsections of their complete instruments. The impact of this limitation is likely greatest on the measurement of quality of life. Only items making up two of 99

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the four factors from the instrument were used and additionally other items from the instrument that did not fall into one of the four factors were also not used. While the results reflect some level of quality of life measurement they do not fully measure quality of life as Weitzner had intended and so the scores may not be a true re flection of the quality of life of the family caregivers that partic ipated in this study. Implications for Health Care Providers While this study had some specific research or iented goals it also had some soft goals that were not included in the actual objectives of the study. All these soft or unmentioned goals had to do with improving th e care that both the patients and family caregivers were receiving from all the health care team members that touch them dur ing their visits to the cancer center. First and foremost is the hope that other health care providers will begin to see the impact that the family caregivers have on the heal th care system and the need to follow the recommendation of the World Health Organization to treat not only the patient but the family caregiver as well (and the whole family unit fo r that matter). The family caregivers are a valuable asset that needs to be relie d upon and therefore ca red for as well. Health care providers that can take the time to listen to the family caregivers and identify what areas the family caregivers are comfortabl e or good at handling are areas that the health care providers can ask them to focus on more speci fically. The areas that the family caregivers are not comfortable handling are ar eas that the health care provid ers can remove from their plate of responsibilities or are areas that the health care providers can offer resources to increase the family caregivers ability to comf ortably handle these situations. The final area for health care providers to consider is asking all caregivers to fill out on a regular basis an instrument similar to the one used in this study to give the family caregivers the 100

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chance to voice their th oughts and feelings. The instrument took approximately 20 minutes for each family caregiver to complete and can give the health care providers insight into the impact of the roles on the family caregivers. Tracking re sults over time can help health care providers identify areas that need to be focused on before they the family caregiver is overwhelmed to the point where they are no l onger a valuable asset to the health care team. Future Research This study lends itself to numerous future rese arch projects. The first such project would be to conduct a series of roundtab le discussions or one-on-one qua litative interviews with the family caregivers to make sure that the current in strument measures all the areas that the family caregivers feel are most important to them. While the instrument was reviewed for content validity, the review did not include any actual family caregivers. Future projects could be expa nsion of studies to others areas within the Shands UF network. These studies could capture family car egivers of children with cancer over multiple cancer types, receiving different primary treatments aside from chemotherapy and to include those that have yet to start outpatient treatment or have finished their outpatient care but are still being seen for follow-up. Another study to consider that could evolve from this project is a multi-site study that involves other facilities with in the Childrens Oncology Grou p (COG) network both here in Florida and outside the state. Expanding the study to additional sites will help to improve not only the amount and depth of information but the overall generalizability of the results. This would ultimately give health care providers a way to anticipate the needs of family caregivers in advance so that they can be addressed more efficiently and allow the family caregivers to continue to be active members of the health care team rather th an passive bystanders. 101

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102 Finally it makes sense to consider a longit udinal study to follow family caregivers during their childs treatment. This study would o ffer a number of benef its including understanding how the family caregiver quality of life changes over the course of treatment and how their perceptions of the demands, hassles and stresses associated with ca regiving change over time. This study would also allow for an analysis of how responsive to change the quality of life instrument and other instruments in use are over ti me as none have been tested in this population of caregivers over an extended period of time.

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APPENDIX A FAMILY CAREGIVER QUALITY OF LIFE AND THE IMPACT OF THE CAREGIVING ROLE QUESTIONNAIRE 103

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Crocker, L, & Algina, J (1986). Introduction to classical an d modern test theory. Fort Worth: Harcourt Brace Jovanovich College Publishers. Edwards, B, & Ung, L (2002). Quality of life inst ruments for caregivers of patients with cancer. Cancer Nursing. 25, 342-349. Fedewa, M, & Oberst, M (1996). Family caregivi ng in a pediatric renal transplant population. Pediatric Nursing 22, 402-417. Gaston-Johansson, F, Lachica, E, Fall-Dickson, J, & Kennedy, J (2004). Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation. Oncology Nursing Forum 31, 1161-1169. Given, B, Given, C, & Kozachik, S (2001). Family support in advanced cancer. CA: A Cancer Journal for Clinicians. 51, 213-231. Glajchen, M (2004).The emerging role and need s of family caregivers in cancer care. The Journal of Supportive Oncology. 2, 145-155. Hagedoorn, M, Buunk, B, Kuijer, R, Wobbes, T, & Sanderman, R (2000). Couples dealing with cancer: role and gender differences regarding psychological distress a nd quality of life. Psycho-Oncology. 9, 232-242. Haley, W (2003).Family caregivers of elderly patients with can cer: understanding and minimizing the burden of care. The Journal of Supportive Oncology 1, 25-29. Iconomou, G, Viha, A, Kalofonos, H, & Kardamak is, D (2001). Impact of Cancer on Primary Caregivers of Patients Re ceiving Radiation Therapy. Acta Oncologica 40, 766-771. Keegan Wells, D, James, K, Stewart, J, Moore I, Patterson, K, & Moore, B, et al., (2002). The care of my child with cancer: A new instrume nt to measure caregiving demand in parents of children with cancer. Journal of Pediatric Nursing 17, 201-210. Kershaw, T, Northouse, L, Kritpracha, C, Schafenacker, A, & Mood, D (2004). Coping strategies and quality of life in women with advanced breast cancer and their family caregivers. Psychology and Health 19, 139-155. Kim, Y, Baker, F, & Spillers, R (2007). Cancer caregivers quality of life: effects of gender, relationship, and appraisal. Journal of Pain and Symptom Management 34, 294-304. Kornblith, A, Herndon II, J, Zuckerman, E, Godley, P, Savarese, D, Vogelzang, N, et al. (2001). The impact of docetaxel, estramustine, and low dose hydrocortisone on the quality of life of men with hormone refractory prostate can cer and their partners: A feasibility study. Annals of Oncology. 12, 633-641. Kornblith, A, Herr, H, Ofman, U, Scher, H, & Ho lland, J (1994). Quality of life of patients with prostate cancer and their spouses. Cancer 73, 2791 -2802. 123

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Laizner, A, Yost, L, Barq, F, & McCorkle, R (19 93). Needs of family caregivers of persons with cancer: a review. Seminars in Oncology Nursing 9, 114-120. Lazarus, R (1966). Psychological stress and the coping process New York, NY: McGraw-Hill. Lazarus, R, & Folkman, S (1984). Stress, appraisal, and coping. New York, NY: Springer Publishing Company. Le, T, Leis, A, Pahwa, P, Wright, K, Ali, K, & Reeder, B (2003). Qual ity of life issues in patients with ovarian cancer and their caregivers: A review Obstetrical and Gynecological Survey 58, 749-758. Meyers, J, & Gray, L (2001). The relationships between family pr imary caregiver characteristics and satisfaction with hospice care quality of life, and burden. Oncology Nursing Forum 28, 73-82. Nijboer, C, Triemstra, M, Tempelaar, R, Sande rman, R, & van den Bos, G (1999). Determinants of caregiving experiences and mental h ealth of partners of cancer patients. Cancer 86, 577-588. Northouse, L, Mood, D, Kershaw, T, Schafenack er, A, Mellon, S, & Walker, J, et al. (2002). Quality of life of women with recurrent breast cancer and their family members. 20, 40504064. Northouse, L, Mood, D, Kershaw, T, Schafenack er, A, Mellon, S, Walker, J, et al. (2005). Quality of life of women with recurrent breast cancer and their family members. Journal of Clinical Oncology. 20, 4050-4064. Northouse, L, Mood, D, Templin T, Mellon, S, & George, T (2000). Couples' patterns of adjustment to colon cancer. Social Science and Medicine. 50, 271-284. Northouse, L, Templin, T, & Mood, D (2001). Couples adjustment to breast disease during the first year following diagnosis. Journal of Behavioral Medicine 24, 115-136. Oberst, M (1991). Appraisal of caregiving scale: Manual for use. Detroit: Wayne State University. Oberst, M, Hughes, S, Chang, A, & McCubbin, M (1991). Self-care burden, stress appraisal, and mood among persons receiving radiotherapy. Cancer Nursing, 14, 71-78. Portney, L, & Watkins, M (2000). Foundations of clinical research Applications to practice. Upper Saddle River: Prentice Hall Health. Rhee, Y, Shin, D, Lee, K, Yu, H, Kim, J, Kim, S, et al. (2005). Korean version of the caregiver quality of life indexCancer (CQOLC-K). Quality of Life Research 14, 899-904. 124

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125 Ries, L, Percy, C & Bunin, G (1999). Introduction. In Ries, L, Smith, M, Gurney, J, Linet, M, Tamra, T, Young, J & Bunin, G (Eds.). (1999). Cancer incidence and survival among children and adolescents: United States SEER program 1975-1995 (pp.1-16). Bethesda, MD: NIH. Schoenfelder, D, Swanson, E, Specht, J, Maas M, & Johnson, M (2000). Outcome indicators for direct and indirect caregiving. Clinical Nursing Research 9, 47-69. Scott, D, Oberst, M, & Dropkin, M (1980). A stress-coping model. Advances in Nursing Science. 3, 9-24 SPSS for Windows, Rel. 15.0.0. 2006. Chicago: SPSS Inc Travis, S, Bernard, M, McAuley, W, Thornton, M, & Kole, T (2003). Development of the family caregiver medication administration hassles scale. The Gerontologist 43, 360-368. Tuinman, M, Fleer, J, Hoekstra, H, Sleijfer, D, & Hoekstra-Weebers, J (2004). Quality of life and stress response symptoms in long-term and recent spouces of testicular cancer survivors. European Journal of Cancer 40, 1696-1703. Wagner, C, Bigatti, S, & Storni olo, A (2006). Quality of life of husbands of women with breast cancer. Psycho-Oncology 15, 109-120 Weitzner, M, & McMillan, S (1999) The caregiver quality of life index-cancer (CQOLC) Scale: Revalidation in a home hospice setting. Journal of Palliative Care 15, 13-20. Weitzner, M, Jacobsen, P, Wagner, Jr., H, Frie dland, J, & Cox, C (1999). The caregiver quality of life index-cancer (CQOLC) scale: Developm ent and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Quality of Life Research 8, 55-63. Weitzner, M, McMillan, S, & Jacobsen, P (1999). Family Caregiver Quality of Life: Differences between curative and palliative cancer treatment settings. Journal of Pain and Symptom Management 17, 418-428. Witt Sherman, D, Ye, X, McSherry, C, Parkas, V, Calabrese, M & Gatto, M (2006). Quality of life of patients with advanced cancer and acquired immune de ficiency syndrome and their family caregivers. Journal of Palliative Medicine 9, 948-963. World Health Orgnaization. (1990). Cancer pain relief and palliative care (pp. 1-12). Geneva: World Health Organization. Yamazak, S, Sokejima, S, Mizoue, T, Eboshida A, & Fukuhara, S (2005). Health-related quality of life of mothers of child ren with leukemia in Japan. Quality of Life Research. 14, 10791085.

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BIOGRAPHICAL SKETCH Michael, a Florida native, a ttended high school at Tarpon Springs High School in Tarpon Springs, Florida. Following high school, he attended the University of Florida, where, in 1995, he earned his Bachelor of Science degree in ps ychology. Michael returned to the University of Florida in the fall of 2001 where he joined the Department of Pharmaceutical Outcomes and Policy as full time student. As a graduate stude nt, Michael received a University of Florida Alumni Fellowship, an AACP Wal-Mart Scholars hip and was elected the Teaching Assistant of the Year by the faculty of the Department of Pharmaceutical Outcomes and Policy.