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Painful aging

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Title:
Painful aging the experience of chronic nonmalignant pain among older adults
Alternate title:
Painful aging the experience of chronic nonmalignant pain in older adults
Alternate title:
Experience of chronic nonmalignant pain among older adults
Alternate title:
Experience of chronic nonmalignant pain in older adults
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Ebener, Mary Kathleen
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English
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ix, 168 leaves : ; 29 cm.

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Chronic pain ( jstor )
Death ( jstor )
Diseases ( jstor )
Health care industry ( jstor )
Nursing ( jstor )
Older adults ( jstor )
Pain ( jstor )
Pain perception ( jstor )
Social interaction ( jstor )
Social psychology ( jstor )
Aging ( mesh )
Aging -- psychology ( mesh )
Chronic Disease -- Aged ( mesh )
Chronic Disease -- psychology ( mesh )
Dissertations, Academic -- Nursing -- UF ( lcsh )
Nursing Research ( mesh )
Nursing thesis, Ph.D ( lcsh )
Pain -- Aged ( mesh )
Pain -- psychology ( mesh )
City of Jacksonville ( local )
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bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

Notes

Thesis:
Thesis (Ph.D.)--University of Florida, 1998.
Bibliography:
Bibliography: leaves 158-167.
Additional Physical Form:
Also avilable online.
General Note:
Typescript.
General Note:
Vita.
Statement of Responsibility:
by Mary Kathleen Ebener.

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University of Florida
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80818012 ( OCLC )

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GENERAL AUDIENCE ABSTRACT


Painful Aging: The Experience of Chronic Nonmalignant Pain Among Older Adults


Continuous or recurring pain associated with chronic disease or persistent injury is called chronic pain. Twenty-five older adults (63-93) were interviewed about their experiences with chronic pain unrelated to cancer. The combined effects of persistent pain and increasing age contributed to what this researcher called the problem of "painful aging". Older adults participating in this study believed that painful aging exaggerated suffering, compromised health, and changed how they thought of present and future time. When they were suffering, they waited for painful time to pass. When they were comfortable, they worried about when the pain would return. Their increasing age and continued pain forced them to consider a shortened future. Marking time was the process that best described how these older adults moved through time when time itself seemed to be standing still. Findings provide a basis for nurses to offer more guidance and support to older adults who find themselves enduring the problem of painful aging.














PAINFUL AGING: THE EXPERIENCE OF
CHRONIC NONMALIGNANT PAIN
IN OLDER ADULTS








By

MARY KATHLEEN EBENER











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 1998




















Copyright 1998

by

Mary Kathleen Ebener

















ACKNOWLEDGMENTS


I am grateful to the many people who supported and

encouraged me during my doctoral studies. Their support helped make this endeavor possible.

I would like to thank my committee chair, Dr. Sally Hutchinson, for her thoughtful critiques and continuing encouragement.

I would also like to thank the other members of my

committee, Drs. Kathy Bloom, Kathleen Smyth, Jo Snider, and Jay Gubrium, for their expertise and guidance.

This dissertation would not be possible if it were not for the insightful contributions by those older adults participating in this study. I extend to them my deepest appreciation and grateful thanks, and I hope that someday, somehow, their pain can be alleviated.

















TABLE OF CONTENTS

page

ACKNOW LEDGMENTS .................................. i i i

A BSTRA C T .......................................... v iii

CHAPTERS

CNE INTRODUCTION ............................ 1

Pain Categories ........................... 2
Chronic Nonmalignant Pain ................. 3
Previous Studies .......................... 5
P urpose .................................. 8
Theoretical Framework .................... 8
Guiding Research Questions ................ 9
Significance of the study for nursing ........ 1 0


TWO REVIEW OF THE LITERATURE ................ 12

Concept Analysis .......................... 13
Perceived Pain Experience .................. 15
Pain Rating Scales ................... 16
Pain Language ....................... 17
Assessing Perceived Pain .................. 18
Impact on Quality of Life ................... 20
Compromised Functionality ............ 21
Lifestyle Changes .................... 24
Suffering and Enduring ................. 26


iv








page

Theoretical Perspective ..................... 27
Symbolic Interactionism ............... 28
Multiple Interpretive Perspectives 31
Sum m ary .................................. 3 3

THREE METHOD ................................... 35

Sample and Setting ......................... 36
Sample Selection ...................... 37
Interviews ............................ 3 8
Sample Description .................... 39
Adequacy of the Sample ................. 40
Procedure for Protection of Human Studies 41
Potential Risks ........................ 42
Potential Benefits ...................... 42
Data Collection .............................. 43
Data Recording .............................. 45
Data Analysis ............................... 46
First and Second Level Coding ............ 47
Selective Coding ....................... 48
Constant Comparison ................... 49
M aintaining Rigor ............................ 50
Credibility Of The Data .................. 51
Consistency Of The Data ................. 52
Fittingness Of The Data ................. 53
Sum m ary ............ ....................... 5 3

FOUR PAINFUL AGING: THE BASIC SOCIAL PSYCHOLOGICAL
PRO BLEM ............................... 55

Introduction ................................. 5 5
Painful Aging ................................ 5 6
Expecting Painful Aging ................. 58
Perceiving More Pain .................... 60
Explanatory Models of Chronic Nonmalignant Pain
and A ging ................................... 6 2
Physical Decline ........................ 62
Structural Reconfiguration ............... 65


V








pAge

Disease Progression ..................... 66
Painful Aging as a Deadly Combination .......... 68 The Relationship of Pain and Aging ............ 70
Consequences of Painful Aging ................ 71
Wearing You Down ...................... 72
Being Less Resilient .................... 74
Doing Less ............................. 7 5
Limiting Adventure ..................... 76
Increasing Vulnerability ................ 77
Juggling Multiple Health Concerns ....... 78 Sensing an Uneasy Future ............... 79
Professional Indifference .................... 81
Sum m ary .................................. 8 4

FIVE MARKING TIME: THE BASIC SOCIAL PSYCHOLOGICAL
PROCESS ............................. 86

Definitions of Marking Time ................. 87
Marking Time and Enduring Time .............. 90
Waiting For Something To Happen ............. 93
Anticipating Pain Relief ................ 94
Anticipating Pain Return ................ 96
Anticipating Death ..................... 98
The Private Experience of Marking Time ........ 99
Socially Unacceptable Topics ............ 102
Partial Disclosure Using Humor ........... 103
Private Misunderstandings .............. 105
Sum m ary ................................... 107

six SUBPROCESSES OF MARKING TIME .............. 109

Recognizing Personal Mortality ............... 109
Aging and Mortality .................... 110
Physical changes ................. ill
Social changes ................... 112
Social structural changes ......... 113 Pain and Mortality .................... 114



Vi








pAge

Gradual decline ................... 114
Episodic decline .................. 115
Redefinition of Lifespan ................. 116
Living Day to Day ............................ 117
Flexible Tim e .......................... 118
Day to Day Suffering .................... 119
Painful and Pain-Free Time .............. 122
Waiting out painful times .......... 124 Cherishing pain-free time ......... 125 Forecasting An Uncertain Future ............... 126
Uncertain Timing of Death ............... 128
W anting To Die ......................... 130
Struggling To Live ...................... 132
Marking Survival Time ................... 133
Sum m ary ................................... 134


SEVEN SUMMARY AND RECOMMENDATIONS ............. 136

Sum m ary ................................... 136
Recommendations For Practice and Education 138
Routine Inquiry About Painful Aging 139 Assess and Document Pain Reports ....... 140 Demonstrate Professional Concern ....... 141 Listen For Indications of Marking Time 142
Recommendations For Further Research ........ 143

APPENDICES

A WRITTEN INVITATION TO PARTICIPATE .... 148 B INFORMED CONSENT ..................... 149
C INTERVIEW GUIDE ..................... 154
D PAIN QUESTIONNAIRE ................... 156


REFERENCES ................................. 158

BIOGRAPHICAL SKETCH ....................... 168


Vii










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





PAINFUL AGING: THE EXPERIENCE OF
CHRONIC NONMALIGNANT PAIN IN OLDER ADULTS By

Mary Kathleen Ebener

May, 1998


Chair: Sally Hutchinson
Major Department: College of Nursing

Chronic nonmalignant pain is known to be more prevalent among older adults, yet it is commonly underappreciated and undertreated. Interview data from twenty-five older adults (63-93) and five health professionals were analyzed to generate a substantive theory about painful aging using grounded theory. Older adults shared how their struggle with persistent pain and increasing age produced a synergistic effect that exaggerated their suffering, compromised their health, and redefined their lives. The deadly combination of pain and aging centrally defined their



Viii








reality, and is termed "painful aging". Painful aging heightened participants' awareness of time, its presence and its passing. When they were suffering, they waited for painful time to pass. When they were comfortable, they worried about when the pain would return. They increasingly acknowledged a shortened future. Marking time was the basic social psychological process that best described participants' efforts to move through time when time itself seemed to be standing still. Subprocesses included recognizing personal mortality, living day to day, and forecasting an uncertain future. Findings provide a basis for nursing interventions that can offer needed guidance and support to older adults who endure painful aging.





















ix













CHAPTER ONE
INTRODUCTION


It is estimated that as a group, persons 65 years and older

experience twice as much pain as their younger counterparts (Crook, Rideout, & Brown, 1984; Ferrell, 1991; U.S. Department of Health and Human Services [USDHHS], 1994). Pain among older persons comes from acute conditions, malignancy, and chronic degenerative changes that are often refractory to usual treatment measures. Multiple coexisting health conditions significantly impact its frequency, further complicate its treatment, and often discourage aggressive pain management options because of potential side effects (Belleville, Forrest, Miller, & Brown, 1971; Kelly & Raj, 1994). Fearing iatrogenic complications in the aged, many healthcare providers are reluctant to offer pain treatment unless an individual repeatedly insists that something must be done. Because of providers' hesitancy, older adults persevere while living with pain that remains largely untreated (Conaway, 1995; Harkins, Price, Bush, & Small, 1994; McCaffery & Ferrell, 1991).







Pain Categories

Descriptions of duration, location, and etiology are typically used to classify pain. Acute pain corresponds to known physiology, correlates with identified mechanical, chemical, or thermal injury, and is expected to subside with healing. The pain accompanying cancer is generally associated with tumor growth or treatment related side effects, often eliciting perplexing pain symptornatology. Clinical guidelines have been developed to facilitate diagnosis and treatment of both acute pain and cancer related pain (USDHHS, 1992, 1994), but the absence of any guidelines related to chronic nonmalignant pain confirms the lack of professional understanding in this area. It is chronic pain that typically eludes medical diagnosis and defies definitive treatment. Why similar pathology does not produce similar responses remains an enigma.

Currently, chronic pain is defined as pain that persists for at

least one month beyond expected healing (Aronoff, 1985; Bates, 1996; Bonica, 1990). When chronic pain is not associated with any malignancy or diagnosable disease entity, it essentially becomes the disease itself (Bonica, 1990). Chronic pain sometimes follows a sentinel event (i.e., trauma), but it is often insidious in onset. Its





3


dominant features are persistence over time and a generally capricious nature that eludes definitive treatment. Perplexing both healthcare professionals and the individuals themselves, chronic nonmalignant pain never serves any useful purpose (Bonica, 1990). Among older adults, the incidence of chronic nonmalignant pain is significantly greater than all other age groups (Hitchcock, Ferrell, & McCaffery, 1994; Howell, 1994; McCaffery & Beebe, 1989).

Chronic Nonmalignant Pain

The chronic nonmalignant pain experience among older adults is typically attributed to varied chronic health conditions, but clear associations are lacking. Older adults themselves perceive that little can be done to alleviate their pain, accepting recurrent or ongoing pain as an inevitable part of the aging process (Ferrell & Ferrell, 1990; McCaffery, 1990; Watt-Watson & Donovan, 1992). Such acceptance, or reluctance to complain, has been previously attributed to a physiological decrease in pain sensation (Bonica, 1990; Cassell, 1995; Raj, 1986). However, there is no empirical evidence to support this claim. Older individuals often assume that their pain can be conquered by willpower and stoic tolerance (Herr & Mobily, 1991; Watt-Watson & Donovan, 1992). They then seek assistance in





4


managing the resultant negative physiological and psychosocial consequences of untreated pain such as altered mobility, impaired sleep, and decreased immune system function (Ferrell, 1991; McCaffery, 1990; Watt-Watson & Donovan, 1992). Some older adults deny the presence of pain because they fear potential consequences (Herr & Mobily, 1991; 1993) such as loss of autonomy, initiation of expensive and time-consuming diagnostics, or confirmation of serious illness and impending death. Failure to acknowledge these widespread attitudes among older adults perpetuates undertreatment of their pain (Davies, 1996; Gagliese & Melzack, 1997; Nadeau, 1993) and undermines any attempts to differentiate what may be unique about the experience of chronic nonmalignant pain among older adults.

Current emphasis on promoting and maintaining health care

within the community necessitates a closer examination of how older adults negotiate their daily chronic nonmalignant pain experience. Twenty-five older adults, whose ages ranged from 63 to 93, participated in semi-structured interviews designed to explore their chronic nonmalignant pain experiences. Participants speculated on unique explanations for their pain, described symptoms, and consistently associated their pain within an aging context.





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Participants shared their perspectives about conditions prompting treatment, use of specific strategies perceived as either effective or ineffective, and their overall difficulties in accommodating both pain and aging. Living with continued pain was found to be variously problematic among these older adults, and their ongoing struggle in addressing issues related to continuous pain and progressive aging was revealed. Because chronic nonmalignant pain is so prevalent among older adults, it is anticipated that their insight will guide further efforts toward optimizing needed support and direction for all older adults who experience chronic nonmalignant pain.

Previous Studies

Previous studies focusing on pain have generally excluded elders over 65 years of age (McCaffery & Beebe, 1989; USDHHS, 1992, 1994). Melding (1991) found that over 4000 publications on pain are written each year, and yet less than 1 % of these focus upon the pain experience among older adults. Some articles addressed pharmacological issues that arise among older adults during acute and cancer pain management, but it is the anecdotal evidence suggesting that older adults perceive their pain experience differently than younger adults that merits further inquiry (McCaffery & Beebe, 1989,





6


Ferrell & Ferrell, 1991). Particularly in the setting of chronic nonmalignant pain, older adults seem to have difficulty differentiating pain from other kinds of unpleasant experiences (Jensen & Karoly, 1992). It has also been suggested that for both older adults and those experiencing chronic pain, adaptation to painful stimuli is a learned response that leads to diminishing pain perception over time (Harkins & Price, 1992; Harkins, Price, Bush, & Small, 1994). In the absence of research based data exploring these possibilities, a majority of healthcare professionals have been allowed to assume that older adults tolerate chronic nonmalignant pain because it is not significantly distressing to them. This study challenges the above assumption by asking older adults themselves about their experiences with chronic nonmalignant pain. Data revealed that participants believe their remarkable tolerance to pain is not by choice, but out of necessity.

Current literature also focuses upon interventions directed by and provided by health care professionals (Hitchcock et al., 1994; Ferrell, Ferrell, & Rivera, 1995). Numerous treatment recommendations are distributed by professional organizations (American Pain Society, 1992), governmental agencies (USDHHS,





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1992, 1994, 1995), and private organizations (Arthritis Foundation, 1995), but scant attention has been paid to how older adults benefit from these recommendations (Ferrell, Ferrell, Ahn, & Tran, 1994). Anecdotal reports from older adults affirm that they frequently minimize their discomfort by using over-the counter analgesics (Taylor, 1985) and non -pharmacological therapies in a "trial-byerror" approach. What has not been previously explored is whether these strategies are effective, or what conditions most significantly influence consideration of treatment. The impact of chronic nonmalignant pain upon functional status, quality of life, relationships with others, spirituality, and perceived health satisfaction has also been poorly understood. Further exploration of these issues among older adults became the foundation out of which the basic social psychological problem of painful aging was identified. Examination of the social and psychological processes utilized by participants to work through this problem of painful aging led to a greater understanding of their problematic reality. Conceptual analysis of the interrelated problem and processes then became the framework supporting a substantive theory about chronic nonmalignant pain among older adults.





8


Purpose

Primary emphases for this study included: (a) developing an understanding of what chronic nonmalignant pain means to noninstitutionalized older adults, (b) learning what approaches are commonly utilized by older adults to live with chronic nonmalignant pain, and (c) finding out how the perceived consequences of these approaches affect their lives. Participant data were then used to generate a grounded theory explicating the basic social psychological problem experienced by older adults who reported chronic nonmalignant pain, and the basic social psychological processes used to address the problem.

Theoretical Framework

A symbolic interactionist perspective is utilized in this study to learn about how older persons perceive their chronic nonmalignant pain. Symbolic interactionism is premised on the belief that human beings act upon and interpret phenomena based on their meanings, and that these meanings are both created and sustained through socially interactive processes. Thus individuals perceive their pain experiences through an interpretive lens, based upon understandings about their pain that are influenced by healthcare professionals,





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family and friends, and their own previous experiences (Davis, 1992; Melzack & Wall, 1988). These contextually situated interpretations of the chronic nonmalignant pain experience, additionally mediated by cultural and religious beliefs, are further complicated by the dynamic nature of the pain itself and perception of how the pain experience affects other aspects of one's life. Symbolic interactionism is thus used to explore the chronic pain experience in a symbolic and subjectively meaningful way.

The grounded theory method is utilized in this study, meaning

that participant data provided a foundation or "ground" for subsequent elevation to a more conceptual level. Semi-structured interviews with those older adults living with chronic nonmalignant pain have illuminated previously unknown dimensions of the experience. A substantive theory on how older adults live with chronic nonmalignant pain has been developed as a result of this study.

Guidinci Research Questions

Grounded theorists assume that people sharing common

circumstances experience shared meanings and behaviors (Hutchinson, 1986), and that these shared meanings constitute a specific social psychological problem that is not always articulated. Guiding





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research questions for this thesis were: a) What is the basic social psychological problem faced by older adults living with chronic nonmalignant pain? b) What is the basic social psychological process used by older adults to address this basic social psychological problem? and c) What are the phases, strategies, properties, dimensions, and/or consequences of the basic social psychological problem?

Significance of the Study for Nursin

Professional nursing is concerned with promotion of health,

illness prevention, and restoring health (Mitchell, Gallucci, & Fought, 1991; Watson, 1979). Key concepts include addressing an individual's responses to health and illness (American Nurses Association, 1980), and caring for the individual in a holistic manner. In this study, there was an assumption that older persons have incorporated various strategies to live with their chronic nonmalignant pain. It was also assumed that their efforts are poorly appreciated by others, resulting in self care that is neither supported nor encouraged. Older adults who live with chronic nonmalignant pain need nurses who can guide their efforts toward self care and wellness while advocating on their behalf.








Pain is a universally experienced phenomenon, and yet the experience of pain is also uniquely perceived and interpreted. Individualized responses to pain are within nursing's professional domain (Mitchell et al., 1991), and there is growing awareness that optimal management of life with pain positively impacts every dimension of perceived wellness. Developing and refining knowledge of how older adults live with chronic nonmalignant pain will enable nurses to realistically inform older adults about their pain management options, skillfully assess their responses to specific interventions, and support them in their efforts to achieve optimal comfort and wellness. An expanded knowledge of the chronic nonmalignant pain experience among older adults can improve patient education, facilitate collaborative efforts to enhance older adults' quality of life while living with chronic nonmalignant pain, and strengthen the generation of a research-based practice within the nursing profession.












CHAPTER TWO
REVIEW OF THE LITERATURE

The experience of chronic nonmalignant pain dominates the body, mind, and soul in ways that are not completely understood (Liebeskind,1991). Neural anatomy and physiology studies have well described normal transmission of painful stimuli, and have developed multiple explanatory models regarding aberrant nervous conduction (Loeser, 1991; Melzack & Wall, 1988). However, this body of knowledge can not address the cognitive processes which transform biochemically mediated impulses into individualized perceptions of pain. Psychosocial scientists continue to study the cognitive, behavioral, and interpretive dimensions of pain, and their findings validate clinical observations suggesting that individuals uniquely interpret and redefine their pain based upon contextual information (Merskey, 1986). Still, how older adults perceive their chronic pain and then negotiate daily living based upon these perceptions goes largely unrecognized because pain studies have sometimes included but rarely focused upon older adults (Roberto,




12





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1994). Current literature is reviewed that explores the subjective concepts of chronic nonmalignant pain and its management, older adults' perceptions of their pain experience, and its subsequent impact on quality of life issues. Recent studies describing how older adults manage their pain are then summarized, followed by a review of literature and rationale supporting the use of a symbolic interactionist perspective and grounded theory methodology in this study.

Concept Analysis

The continuous or recurring presence of chronic pain prompts a renegotiation of how life is lived. Alleviation of pain, or managing in spite of the pain, become major preoccupations (Donoghue & Siegel, 1992, Roberto, 1994; Thorne, 1993). When chronic pain is clearly linked to a diagnosed malignancy, individuals usually consult health professionals who then recommend specific pain management strategies that are known to be highly effective (American Pain Society, 1992; USDHHS, 1994; World Health Organization, 1990). When chronic pain is less connected to any definitive etiology or is described as non-specific headache, joint pain, or back pain, it is probable that individuals do not always consult health care





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professionals. Davis (1992) developed a concept analysis on the meaning of pain management for persons experiencing chronic nonmalignant pain. Her analysis was based upon a systematic procedure suggested by Walker and Avant (1988). A model case was developed using conversations from six respondents, demonstrating the importance of motivational, cognitive, and sensory interaction to successfully achieve modulation of pain intensity and its effects upon other aspects of one's life. Davis posited that contextually defined strategies focusing upon sensory pain relief (pharmacological and non-pharmacological measures) will be largely ineffective unless cognitive, behavioral, and coping strategies are also adopted. This inclusion of self efficacy as a necessary component for successful chronic nonmalignant pain management differs from the traditional focus on medication to achieve sensory pain relief, but it may be the critical link that ultimately supports and empowers effective life management while living with chronic nonmalignant pain. Others who have studied the management of chronic nonmalignant pain concur (Brown & Nicassio, 1987; Hanson & Gerber, 1990; Nossell, 1996). Pharmacologic treatment can subdue painful symptomatology, but cognitive efforts to enhance coping and





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accommodate lifestyle changes are required to stabilize accompanying emotional or physical distress. Better understanding about how individuals act and perceive their pain experience is needed, particularly among older adults since this growing population is significantly affected (Ferrell, 1991; Gagliese & Melzack, 1997; Roy & Michael, 1986).

Perceived Pain Experience

Clinicians and researchers have generally relied upon a variety of surveys and instruments to find out about perceived pain. While the literature always acknowledges pain to be a subjective phenomena (Cassell, 1995; Ferrell, 1991; Griepp, 1992; Howell, 1994; Sullivan, 1995), there exists an overwhelming desire to quantify its varied characteristics. Intensity, location, quality, precipitating factors, mediating factors, and temporal factors are all routinely assessed and then related to physical and emotional functionality in an effort to describe the pain experience and determine its etiology. Clinicians and researchers use quantitative methods to compare individuals' pain perception before and after treatment, but difficulties in capturing pain's multidimensionality





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are always acknowledged (Choniere & Amsel, 1996; McGuire, 1984; Melzack, 1975; Meredith, 1997).

Pain Rating Scales

The pain experience resists scientific study. It is a private and intangible sensation (Sullivan, 1995). It is always difficult to elicit a complete description of this private experience, and common sensory impairments among older adults further complicate assessment and confound the findings (Ferrell et al., 1994). An example is the routine practice of asking for a rating of intensity between 0 and 10 ("0 being no pain and 10 being the worst pain, how do you rate your pain?"). Older adults frequently have more difficulty than their younger counterparts in conceptualizing their pain using a number, and they often find visual scales difficult to read (Choiniere & Amsel, 1996). The use of pain rating scales appeals to those who must document pain status, and their use is suggested by current Agency for Health Care Policy and Research [AHOPR] guidelines of clinical practice (USDHHS, 1992, 1994). Yet clinicians find that patients have difficulty assigning a number to their pain, and anecdotal reports suggest that older adults are particularly inclined to have more problems using these pain scales





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(Herr & Mobily, 1993). Currently, it is not known whether older adults actually perceive their pain intensity differently, whether they simply require alternative strategies to adequately assess their pain intensity, or both.

Pain Language

Pain also resists language; words are inadequate to fully communicate the experience (Sullivan, 1995). Health care professionals have developed a "pain language" that is meaningful among themselves, but this language is not always comprehensible to others. Anecdotally, authors have noted that older adults consistently use descriptors other than those offered by a clinician (Herr & Mobily, 1991). One example is the reluctance to say the word 99 pain". Older adults commonly substitute other descriptors such as "discomfort", "aching", and "soreness" (McCaffery & Beebe, 1989). This language barrier thwarts effective communication, and repeated attempts to quantify and objectify the pain frustrates and disillusions those trying to communicate perceived pain.

Persons experiencing chronic nonmalignant pain are

particularly vulnerable to this frustration surrounding language because their experience has never been adequately described as





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perceived (Loeser, 1991; Sullivan, 1995). Expressive behaviors or artistic expression have often been employed because language is found to be totally inadequate (Janesick, 1994; Predeger, 1996). In this study, participants were asked to describe their experience, but the conversations remained open and unstructured so that the language itself was not unnecessarily restrictive.

Assessingi Perceived Pain

Assessing perceived chronic nonmalignant pain involves a

determination of current health status, severity of pain, independent functionality, and mental status, but both process and interpretation can be different among older adults (Herr & Mobily, 1991). Actual or potential decreases in hearing, visual acuity, mobility, stamina, and memory present special problems in assessment (Davies, 1996; Herr & Mobily, 1991; Gagliese & Melzack, 1997). Atypical presentation and adaptive behavior are classical gerontological characteristics that continue to mislead health care providers (Gagliese & Melzack). In addition, older persons' reluctance to admit pain further distorts communication with health care providers. Continued discounting of the pain experience by both health care professionals and older adults themselves blurs the distinction between health and illness





19


and hinders the generation of knowledge about what chronic nonmalignant pain means to older adults.

The relationship of perceived pain to medical diagnosis,

general activity, depression, anxiety, and the perceived responses of others is also recognized, but not well understood (Davis, 1992; Melzack & Wall, 1988). Among older persons, the presence of chronic nonmalignant pain most likely compounds their perceived physical, emotional, and social vulnerability. Functional decline is less readily compensated among those already experiencing compromised health status, and the resulting loss of mobility and independence accentuates feelings of depression and loneliness (Gagliese & Melzack, 1997; Kelly & Raj, 1994). Fatigue and frustration further limit ability to defend oneself against prevailing societal attitudes that "old people" do not have appreciable pain, or that their chronic discomforts should be tolerated as part of the aging process (Davies, 1996; Pasero & McCaffery, 1996). Older adults experiencing chronic nonmalignant pain say that they are sick and tired of being sick and tired (Donoghue & Siegel, 1992).

Current knowledge regarding treatment of chronic pain is often replaced by intuition and guesswork when applied to an older





20


population (Hazzard, 1993). When researchers surveyed 10,000 Americans about the prevalence of non-steroidal anti-inflammatory drug use among the general population for chronic pain (Taylor, 1985), only 207 of these respondents were over 65 years of age, and none were over 85. Since older adults increasingly comprise a significant portion of the general population, their responses to specific pain management options need to be better represented. Gerontologically sensitive information specifically addressing the chronic nonmalignant pain experience among older adults is needed to address any unique nuances inherently present within an older population.

Impact Upon Quality of Life

Older adults suffer disproportionately from chronic painful conditions, and this chronic pain represents a serious threat to quality of life (Ferrell et al., 1994). Chronic pain from any origin has been reported to impact multiple domains of physical, spiritual, psychological, and social well-being (Ferrell, Rhiner, Cohen, & Grant, 1991; Roy, 1992), but much of the currently published literature speculates on the generally negative outcomes accompanying compromised functionality. Changes in lifestyle or life management,





21


intra- and interpersonal relationships, emotional stability, and spirituality are all known to impact quality of life, but remain underappreciated because they are more difficult to quantify. The profoundly disruptive effects of chronic illness, perceived as suffering, are noted in the literature but do not specifically address the experience of chronic nonmalignant pain. A greater appreciation of how chronic nonmalignant pain impacts older adults in needed. Compromised Functionality

Studies addressing the quality of life among adults

experiencing chronic nonmalignant pain focused upon compromises in functionality. One survey study (Hitchcock et al., 1994) described changes in functionality among community dwelling adults who reported chronic nonmalignant pain. This study included adults of all ages, ages 19 to 90, yet the average age of 47 indicated that few were older than 65 years. Ferrell and colleagues (Ferrell & Ferrell, 1990; Ferrell, Ferrell, & Osterweil, 1990; Ferrell et al., 1995) included social and emotional indicators of quality of life when they studied nursing home residents reporting chronic nonmalignant pain symptoms, but still focused primarily upon compromises in functionality. Little is known about quality of life among non-





22


institutionalized older adults who experience chronic nonmalignant pain while living within a community setting.

The survey study by Hitchcock et al. (1994) included 204 adult members of the National Chronic Pain Outreach Association and measured their perceived quality of life. Participants listed their "worst problems" in descending order: inability to work at a job or do household chores, limitations on activities and hobbies, difficulty in fulfilling one's role as spouse, uncertainty about the future, lack of pain control, life-style changes and decreased socializing, decreased mobility, and difficulty sleeping. All 204 respondents were members of a national self-help organization which suggests that they had assumed some responsibility for managing their chronic pain. Their collective demographic profile depicted stable personalities, intact marriages, and average or better-than-ave rage education and financial resources. Yet participants reported a significantly diminished quality of life, experienced pain 80% of the time, and perceived medical interventions to be inadequate in helping them live their lives.

No studies have specifically studied the impact of chronic nonmalignant pain upon older adults, but three studies described





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general pain complaints among nursing home residents. Ferrell et al. (1990) interviewed 92 nursing home residents from three randomly selected units representing different levels of care (board and care, intermediate care, and skilled care). These alert and verbal residents reported that pain primarily impaired ambulation (53%), posture (49%), and sleep (45%). Pain also impaired their ability to enjoy social activities (54%), such as group meals, visiting with friends and relatives, and recreational activities.

Subsequently, Ferrell et al. (1995) interviewed 217 cognitively impaired residents using a 33 item questionnaire along with several other pain assessment instruments. Most were dependent in all activities of daily living and demonstrated significant cognitive impairment. Sixty-two percent of all respondents reported pain complaints, primarily in the back (90%) and knees (78%). These surveys did not differentiate types of pain, but described the pain in ways that are usually associated with chronic nonmalignant pain.

Even when pain reports were unable to be elicited, Marzinski (1991) found that the presence of pain could often be inferred from behavioral cues. Marzinski's (1991) study assessed pain among 26 cognitively impaired nursing home residents who had documented





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histories of chronic painful conditions. She found that screaming, moaning, pacing, and withdrawal behaviors such as curling into a fetal position dramatically subsided upon initiation of pain management. Data from all these studies indicated that chronic nonmalignant pain was prevalent among older persons in many settings, and compromises in quality of life were significant. Lifestyle Changes

Pain management experience within the community is not analogous to institutional settings because there is a stronger emphasis on self care and greater inclusion of non pharmacological strategies (Ferrell & Ferrell, 1991; Ferrell et al., 1994; Ferrell, Grant, Rhiner, & Padilla, 1992). In the setting of chronic nonmalignant pain, self-directed pain management strategies typically impact individuals' lifestyles, are frequently unknown by health care professionals, and are often based upon socially learned approaches involving traditional and non-traditional pain management options (Roy, 1992). Sometimes these self-directed strategies of pain management continue to be used even when they are clearly detrimental. Because current economic trends favor decreased hospital stays and increased utilization of community





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health resources, life management while living with chronic pain needs to be better understood and then selectively supported (Ferrell & Ferrell, 1991; Ferrell & Schneider, 1988).

Since 1988, Ferrell and colleagues have actively studied the

home management of chronic pain associated with cancer. They have explored current pain management strategies, assessment and measurement issues, and varied interventional approaches (Ferrell & Ferrell, 1991; Ferrell & Schneider, 1988; Ferrell et al., 1992). An initial qualitative exploratory study describing pain management both at home and within a hospital did not specifically target older adults, but the average age of 58 (N=103) indicated that a substantial number of these adults were indeed older (Ferrell & Schneider). Narrative data obtained from their open ended survey revealed that 83% of all respondents took medications less frequently than ordered, 70% immobilized themselves to decrease pain, and 60% described creative and unique non-pharmacological methods including massage, imagery, praying, and physical activity to decrease pain. While this study did not focus upon chronic nonmalignant pain, the data strongly suggested that pain is managed differently outside of institutional settings. Chronic nonmalignant





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pain rarely necessitates inpatient treatment (Hanson & Gerber, 1990; Nossell, 1996; Watt-Watson & Donovan, 1992), and so it is likely that many community based older adults are living with chronic nonmalignant pain and continue managing themselves in ways that compromise their quality of life. Sufferinci and Endurinci

When the experience of chronic nonmalignant constitutes

suffering, either focused within the immediate reality or viewed as an overall perspective about one's quality of life, some authors have proposed that individuals learned to endure. Zalon (1997) studied frail elderly women recovering from abdominal surgery, describing the lived experience of these women during periods of acute postoperative pain. She found that these older women described endurance as their primary mechanism for getting through the pain, and suggested that these study participants may have learned the process of endurance because of their previous experiences with chronic nonmalignant pain. Burke and Flaherty (1993) studied the coping strategies of elderly arthritic women, and also reported that their participants described enduring as a way of dealing with their pain on a daily basis.





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Among individuals describing their experiences with a variety of illness experiences, Morse and Carter (1996) posited that enduring was a process while suffering was the emotional response to that which was endured. Using patient narratives of experience, semi-structured interviews, and secondary data obtained from interviews with patients' relatives, they further identified that some individuals were enduring to survive, others were enduring to live, and some were enduring to die. These authors did not focus on the experiences of older adults, but their findings are applicable to an older population. By exploring the relationships between enduring and suffering, Morse and Carter contributed to a greater understanding of how individuals' quality of life were impacted by illness, and how they lived through the experience.

Theoretical Perspective

Recognizing the inherent subjectivity of pain, a major focus in this study has been to explore the social contexts and conditions that influence how older adults perceive their chronic nonmalignant pain experience. The sociological theory of symbolic interactionism is used because the meaning of pain is contextually situated (Charmaz, 1983, 1990, 1991), symbolically interpreted (Donoghue &





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Siegel, 1992) and fundamentally linked to one's interaction within the self and among others (Roy, 1992; Thorne, 1993). Interaction within the self refers to the blending of personal past experience, present status, and anticipated future as they create a very contextual and subjective interpretation of pain. Interaction among others refers to the dynamic action and consequences of action that further contribute to meaning making activity and understanding of reality. This symbolic interactionist paradigm focuses on everyday life, on the meaning of events to people in natural or everyday settings (Chenitz & Swanson, 1986). Symbolic interactionism is an ideal framework for studying the experience of chronic nonmalignant pain in older adults and how they relieve their pain. Symbolic Interactionism

Symbolic interactionism rests upon three basic premises.

Blumer (1969) classically describes the first premise by explaining that human beings act towards people and things on the basis of the meanings that these people and things have for them. The meaning of something is not to be taken for granted, because meaning is in fact central in its own right (Blumer). His second premise is that meaning arises out of the process of social interaction, and meaning





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thus grows out of the ways that persons interact. His third premise is that these meanings are handled in, and modified through, an interpretive process used by the person in dealing with the things he encounters. Thus, a human being is not a mere responding organism, but an acting organism that formulates meaning and acts accordingly. Responsiveness becomes not just a reflexive act but a purposeful and meaning driven activity. This dynamic approach captures the subjective perspectives created out of constant interaction. The experience of chronic nonmalignant pain behavior among older adults within their homes is thus approached using this participant perspective, exploring the interactive and interpretive processes. Context and patterns of interaction become the conditions that affect how meaning is created within each individual.

Charmaz (1983, 1990, 1991) has explored manifestations of chronic illness among adults of all ages using symbolic interactionism, and found that both self identity and relationships with others are intimately linked with what is perceived and interpreted. Her use of social constructionist theory and grounded theory methodology reflects the symbolic interactionist perspective





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as she paints a vivid picture of what it is like to experience chronic illness. Since chronic illness often involves some dimension of pain, this sensitivity to self and to relationships with others contributes to the development of questions in this study so that more can be learned about the social impact of chronic nonmalignant pain among older adults.

Howell (1994) generated an explanatory theory for women with chronic nonmalignant pain using grounded theory, an approach that relies on the symbolic interactionist framework. She found that the core variable affecting a chronic illness trajectory was "validation" of the individual's perceived pain experience. Millikin and Northcott (1996) also found validation to be the core variable influencing either a wellness or illness trajectory. Both studies included women over sixty-five years of age. These studies are credible, and help to explain how the interactional process of validating one's experiences influences progression toward perceived health or illness. Findings from these studies underscore the interactional influences on women who live with chronic nonmalignant pain, because only women who felt that others believed their reports of pain were able to progress towards wellness.





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Multiple Interpretive Perspectives

Some studies describing the profound interactional influences on the interpretation of pain experience incorporated multiple interpretive perspectives. Cultural and social ly-learned influences are acknowledged to affect the meaning of pain (Bates, 1996), and some studies emphasized the influence of cultural beliefs by combining symbolic interactionism with ethnohistoricism (Villarruel & Ortiz de Montellano, 1992) or sociocultural interpretive theory (Bates, 1996). One study traced the socially learned meanings attached to the interpretation of pain among Mesoamericans (Villarruel & Ortiz de Montellano, 1992). Cultural beliefs passed from generation to generation, and interacted with present day experiences to shape participants' interpretations of pain. The Mesoamerican perspective of pain was found to be deply rooted in both ancient and contemporary cultures, and culturally sensitive nursing care required a basic understanding of both.

Other studies described multiple ethnic belief systems

involving Latin American and European cultures (Bates, 1996). Bates' program of studies involved immigrant and second generation Americans living in New England, focusing on the ethnic backgrounds





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of those coming from Europe and Puerto Rico. Different cultural belief systems shaped individuals' reports of pain, symbolic representations of what pain meant to them, expectations for treatment (Bates, 1996). These studies were quantitative in design, and did not specifically use a theoretical perspective of symbolic interactionism. Bates used these studies to propose a culturally sensitive model of pain assessment and treatment, but her model is grounded by the basic tenents set forth in symbolic interactionism.

The symbolic interactionism approach, along with other interpretive theoretical frameworks, assumes that interacting persons perceive experiences in their own unique way. Knowledge and truth do not rely upon objective realism, but become the product of a subjectively interpreted perspective. Reality construction for the symbolic interactionist becomes both process and outcome, continually defining and redefining individuals' interpretations of the environment itself and of human interaction within it. Thus it is assumed that interpersonal relationships significantly affect how older adults interpret their pain experience. Symbolic interactionism is an appropriate framework for discovering the basic social psychological problem experienced by older adults who





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live with chronic nonmalignant pain, and for uncovering the basic social psychological processes that are used as older adults work to ameliorate the problem.

Summary

An investigation of the subjective perspective is needed to fully explore how older adults think about and live with chronic nonmalignant pain when living primarily within non-institutional environments. The perceived chronic nonmalignant pain experience among older adults has been inadequately described. A decreased quality of life has only been inferred from the perceived meaning. No studies have specifically explored the phenomenon of chronic nonmalignant pain among older adults. Since current economic trends encourage community-based health care, a substantive theory needs to be generated to explain the private and social dimensions of chronic nonmalignant pain that include those older adults living within community settings. Contextual conditions which influence perceived benefits or disadvantages accompanying self management need to be uncovered. Using a symbolic interactionist framework, this study will focus on the subjective perspective, exploring information that is "grounded" in the sense that participants' own





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words provide the foundation for building a more conceptual explanatory theory. Grounded theory provides a set of useful strategies to explore how older adults live with chronic nonmalignant pain, how they interpret their painful experiences, and how interactions with others mediate their experience. Generation of a substantive theory concerning chronic nonmalignant pain among older adults can advance the challenge of appropriate communitybased pain management among this population.












CHAPTER THREE
METHOD

An inductive approach using grounded theory methodology was chosen so that knowledge of community dwelling older adults' experiences with chronic nonmalignant pain could be gained. The direction of analysis built upward from an individual level, constantly comparing empirical and substantive data so that a substantive theory could be generated about a larger population (Strauss & Corbin, 1994). In this study, data from older adults experiencing chronic nonmalignant pain was used to generate a substantive theory that could explain the experience among all older adults who lived with chronic nonmalignant pain. The research participants themselves were considered experts: their responses guided and informed me, the researcher, about their experiences living with chronic nonmalignant pain.

Grounded theory is a systematic approach for the collection and analysis of qualitative data, and it is undergirded by the symbolic interactionism perspective (Chenitz & Swanson, 1986). For




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symbolic interactionists, perception is influenced through social interaction, and the construed meaning of people, things, and events guides behavior (Chenitz & Swanson, 1986). Patterns of daily living are interpreted and re-enacted on the basis of this meaning making activity.

Grounded theorists assume that people who share similar

experiences also share a basic social psychological problem, a core variable that is generally unarticulated but always present (Glaser, 1992). Within a social context, this problem is also assumed to always affect individual behavior and their social interactions. Individuals develop social psychological processes to negotiate the problem, and these processes are utilized under specific conditions and lead to specific consequences. It is these problems and processes that are explored among older adults experiencing chronic nonmalignant pain.

Sample and Setting

Non -institutionalized older adults who reported living with chronic nonmalignant pain were sought primarily among an urban community in the southeastern United States. One ninety-two year old gentleman requested that he be included even though he had





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recently moved to an assisted living facility. I had planned to exclude adults who were less than sixty-five years of age, but a few participants asked to be included even though they were only sixtythree years of age. Potential participants were asked if they had experienced chronic pain that was not cancer related, and if they would be willing to describe their experience. Interested older adults who responded positively and possessed sufficient physical and mental abilities to participate in an interview lasting approximately one hour were included. Potential participants were excluded if they were unable to speak or hear, or possessed significant mental and/or neurological deficits that would impair conversation with the researcher. Sample Selection

Initially, a written notice describing the study and asking for potential participants was distributed to nurses who practice in primarily community based settings (see Appendix A). Similar written information was also distributed to the facilitators of local support groups affiliated with chronic nonmalignant conditions such as arthritis. Nurses and support group facilitators were asked to identify older adults who met the inclusion and exclusion criteria





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and then either (a) distribute the information so that the older adult could contact the investigator, or (b) request permission from the older adult for the investigator to make initial contact. Several local parish nurses and a few home health nurses expressed willingness to refer older adults to this study. As the study progressed, I found that contacting community nurses and support group facilitators by telephone yielded few referrals. Study participants themselves became the primary referrals for enrolling additional older adults experiencing chronic nonmalignant pain. Interviews

Interviews generally took place in the participant's home.

Anticipating that some participants might be reluctant to invite a researcher into their home, other possible locations that could provide a quiet and private atmosphere were suggested, but few participants chose to leave their homes. Three interviews were conducted by using a telephone, these interviews took place after signed written consent forms were mailed back to the researcher. Face-to-face interviews were preferable from the researcher's perspective, and so interviewing by telephone was generally discouraged. Interviews generally took approximately one hour, and





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participants were informed that they could stop the interview if they became uncomfortable or fatigued. Actual length of time spent with each participant usually exceeded one hour because of their desire for social interaction. Social time was loosely controlled and not overtly discouraged because of the desire for each participant to feel comfortable and relaxed enough to talk freely. Sample Description

The sample included fourteen men and eleven women, ranging in age from 63 to 93 years of age, with an average age of seventythree. All participants met inclusion criteria and resided within the community. Two participants lived in retirement communities and one had recently moved to an assisted living environment because of worsening problems with mobility and self care. All other participants lived in their homes, either alone or with at least one other family member.

As the study progressed, sample selection and size were guided by purposive and relevant selection of individuals whose unique characteristics contributed to the substantive problem under study (Strauss, 1987). Diversity in type of chronic nonmalignant pain reported, overall health status, and socioeconomic status was





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sought. All but one participant was Caucasian, and so a range of ethnically diverse individuals was not captured in this study. Since the aim of this study was to generate theory, representative data were sought that accounted for as much variation as possible (Glaser, 1992).

Adequacy of the Sample

Adequacy of the sample ultimately affects the reliability and credibility of the study (Chenitz & Swanson, 1986), and so theoretical sampling was used to guide data collection. Theoretical sampling refers to the collection of data that are relevant to the emerging categories. Initially, current knowledge on chronic nonmalignant pain suggested that the sample should include individuals with diverse health status, functionality, and socioeconomic status. Interview questions were designed to elicit information about how pain was experienced and how participants adapted to the changes in their lives brought on by chronic nonmalignant pain. As the study progressed, emerging theory about participants' awareness and sensitivity to time drove further sampling until interview data no longer yielded new information and categories were fully developed (Strauss, 1987). Interview





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questions began to focus more on participants' changing perspectives about time, and their concerns about how time passed. Participant interviews ultimately yielded no new theoretical information about painful aging, dimensions and properties of the phenomena were adequately explained. Theoretical saturation was reached, and sampling was completed.

Procedure for Protection of Human Sub-mects

There was minimal risk to human subjects in this study. This study involved only conversation with the researcher about chronic pain experiences among older adults. The interviews focused primarily on how older adults perceived their chronic nonmalignant pain and its impact upon daily living. Written informed consent was obtained (see Appendix B), with one copy kept by me and one copy given to each participant. Enlarged print and simplified language were used in the consent form to enhance readability, and several participants remarked positively about how easy it was to read. As each interview began, this written consent was followed by verbal consent to confirm willingness to participate. Information discussed while obtaining verbal consent included (a) re-statement of the general purpose of the study, (b) the voluntary nature of





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participation, (c) confidentiality of data, and (d) anonymity of participants.

Potential Risks

Potential risks to participants included fatigue, and possibly some distress or exacerbation of their pain as their thoughts focused on the pain. Potential fatigue was minimized by initially limiting the interview time to approximately one hour, yet most participants requested more time "to say all that has to be said". No one verbalized any increase in their pain, and several reported that they "felt better" after the interview, appreciating a chance to talk openly about their pain.

Potential Benefits

Potential benefits to participants included the opportunity to freely discuss their chronic pain experience, how it impacts their lives and how they manage their pain. Opportunities to discuss their pain with an interested adult who was not a relative or primary healthcare provider allowed many respondents to gain further insight regarding their thoughts on painful aging. Similar benefits have been documented by Hutchinson, Wilson and Wilson (1994). Societal benefit included the opportunities to better understand the





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uniqueness of chronic nonmalignant pain among older adults, the conditions affecting their treatment efforts, and strategies felt to be most useful. Such awareness can serve as a basis for designing appropriate and relevant nursing interventions for this population.

Data Collection

Data were primarily collected through semi-structured

interviews (see Appendix C). Interviews were designed to be relaxed in style, providing a non threatening environment that was conducive to the sharing of participants' thoughts and feelings. Guided by general inquiry and then a few probing questions, the interviews sought to elicit fundamental information about the dimensions and properties of chronic nonmalignant pain experienced by older adults. Phases, strategies, conditions, and consequences of the perceived experience were the primary focus (Hutchinson, 1986). As theory generation progressed, more emphasis was placed upon eliciting information relative to participants' changing time perspectives.

Pain history information was gathered from a short

questionnaire designed to describe and categorize pain reports (see Appendix D). This questionnaire was completed by each participant with guidance from the researcher. A quantifiable pain history was





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recorded by asking participants to rate the intensity of pain currently being experienced and the intensity range of pain usually being experienced using a verbally described numerical rating scale. Descriptions about specific physical locations of pain such as back, neck, or feet were also sought. Data obtained from these questionnaires were sought so that findings could be interpreted within the context of similar descriptive data currently being reported in the pain literature. Similar descriptive data have been requested in order to facilitate comparisons among studies (B. Ferrell, personal communication, April 26, 1996), and these comparisons will add further to the limited body of knowledge about chronic nonmalignant pain among older adults.

In this study, the data were also used to describe the sample. The twenty-five older adults who recounted their experiences with chronic nonmalignant pain indicated an average pain intensity score of "Y while being interviewed. Their "worst" pain intensity averaged a rating of "8" and their "least" pain intensity averaged a rating of "2". Using "0" as no pain and "10" as the "worst possible" pain, their self reports indicated a typical pattern of sustained chronic pain with wide fluctuations in intensity. Participants





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averaged four separate painful locations that persistently bothered them, and reported significant alterations in sleep, activity, socialization, and emotional stability because of their pain. This descriptive information helps others understand how chronic nonmalignant pain impacts daily living, and essentially supports participants' own conclusions about the problematic nature of their current reality.

Most participants completed a singular interview, however

four participants consented to additional shorter interviews when I requested clarification or validation of the data. Participation in this study was not be contingent upon future availability, yet all participants expressed willingness for future contact. Credibility of subsequent data analysis was enhanced because of participants' willingness to expand upon concepts and ideas that I extracted from initial interviews.

Data Recordina

Interviews were negotiated with each participant.

Immediately prior to each interview, a portable audio tape recorder was placed between the participant and me. I asked participants questions from the interview guide (see Appendix C), and was then





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guided by their responses in eliciting further data. Interviewer conversation was intentionally brief, but participant elaboration was encouraged because detailed descriptions provided information about the problem under study.

Audio taped recordings were transcribed verbatim so that no data were lost, and then stored in a locked drawer to assure participant confidentiality. Upon completion of this study, these audio recordings will be erased. Each transcript was coded to assure anonymity. Typed transcripts, memos, and codes were stored on computer diskettes, and locked in my office. Within the computer itself, access to any typed information is limited via password protection.

Data Analysis

Using grounded theory, the fundamental method of data

analysis involved the constant comparative method, first proposed by Glaser and Strauss (1967). Each phrase, each line, and often each word of transcribed text was coded, and codes were constantly compared.





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First and Second Level Coding

First level coding involved efforts to briefly summarize what has been said, the credibility of this study ultimately resting upon the accuracy of these codes (Janesick, 1994; Strauss, 1987). Coding was "open", meaning that no pre-existing categorization was allowed to influence the coding process (Glaser, 1978). First level coding was solely focused upon describing what participants were saying. Properties and dimensions emerged as codes were compared, often involving temporal questions about frequency, duration, and timing.

Second level coding involved conceptualizing the data by

comparing incident with incident, and incident with concept (Glaser, 1992). While first level codes tended to break the data into pieces, second level codes then elevated the data into more abstract concepts (Hutchinson, 1986). Second level codes were also "open", meaning that I as a researcher was not constrained by existing theory and could concentrate on conceptually elevating the first level codes into more conceptually complete ideas that still reflected participant data.




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Selective Coding

Concepts were then categorized and linked, and constructs

developed. As emerging categories were compared with each other, as well as other substantive codes, core variables reflecting a basic social psychological problem and process were identified. Once the basic social psychological problem and process were identified, open coding ceased and selective coding began. In selective coding, the researcher limits coding to a few codes that appear particularly relevant to the data. In this study, selective coding drove further data collection and sample selection (Glaser, 1978). The resulting conceptual analysis retained credibility because it was grounded in the data (Guba & Lincoln, 1982).

Causal or intervening conditions and consequences were also reviewed (Glaser & Strauss, 1967). Consequences were actual or potential, and some became a condition for further action or inaction. For example, I frequently asked participants what conditions prompted what activity or strategy, what were the consequences, and were these consequences anticipated. Sometimes the answers were within the data, but sometimes I needed to continue interviewing until the phenomenon was fully explained.





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Constant Comparison

Systematic comparisons of two or more concepts were used to explore relational linkages, and theoretical sensitivity allowed the development of broad categories and subcategories (Glaser, 1992). At times, emergent designs and understandings were compared with existing theory. The contextually situated and experientially grounded data may be related to existing paradigms, in which case I explored relevant linkages. Each perception in each category was then compared with other perceptions, asking what category would include similar perceptions. Finally, the emerging categories were compared with each other to ensure mutual exclusivity and inclusion of all the perceptual variations.

Eventually, core categories emerged that could illuminate the basic social psychological problem going on among participating elders. Completeness and explanatory power indicated saturation of the categories (Glaser, 1992). As core categories emerged, they formed the basis of a theoretical construct. These theoretical constructs were abstract but were also clearly grounded in the substantive data. Guided by Glaser and Strauss (1967), theoretical constructs and core variables were then linked to form a substantive





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theory. Use of the constant comparative process strengthened credibility of the theory because of its implicit groundedness. A comprehensive, integrated, yet parsimonious theory was sought to best capture the essence of what differentiates older adults experiencing chronic nonmalignant pain from others.

Maintaining Ricio

In qualitative research, the researcher is considered a primary research instrument (Hutchinson, 1986; Rew, Bechtel & Sapp, 1993; Streubert & Carpenter, 1995). A researcher's past experience with the area being studies can be perceived as a source of bias or as bringing richness to the research endeavor (Chenitz & Swanson, 1986). 1 have no personal knowledge concerning the experience of chronic nonmalignant pain, nor do I have personal knowledge about what it is like to be an older adult over sixty-five years of age. I approached this research study as a novice, being relatively uninformed about how chronic nonmalignant pain influenced the lives of older adults. My unbiased approach allowed me to question and probe participant responses more deeply than I might otherwise have done, and my lack of empirical knowledge contributed to greater receptivity of participants' descriptions. Study participants





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frequently complained that others' trivialized complaints related to pain or aging, and so my own naivete proved valuable because I did not presume to know what they were experiencing. When asked, participants were always willing to expand my understanding by giving examples.

Credibility Of The Data

The trustworthiness of grounded theory findings is necessary to assure that the conceptual analysis of data faithfully illuminates the basic social psychological problem perceived by participating individuals, and captures a true description of how they dealt with the problem. Perceptions of human experiences are unique, dynamic, and contextualized and therefore necessarily difficult to validate using empirical methodology (Hall & Stevens, 1991). Credibility of a grounded theory, the parallel to validity in quantitative studies, can be established by retrospectively reviewing recorded data and prospectively verifying information with additional participants (Hall & Stevens; Glaser, 1978). When participant data have been accurately and carefully recorded, and interpretations remain faithful to participants' understanding of their experiences, then subsequent analysis of participant data remains believable and





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credible. Continuously checking with participants throughout the duration of the study reassured me, as researcher, that my interpretations of the data were trustworthy and accurate. When analysis was largely completed, I approached four additional older adults experiencing chronic nonmalignant pain. Their confirmation of my findings and analysis provided further verification and credibility.

Consistency Of The Data

Consistency is the qualitative characteristic most closely related to quantitative reliability. By its very nature, qualitative research can not be replicated. The same interviews, the same data, and the same interactions will never reoccur because of the dynamic interactive qualities of participants and life events. However, it is necessary for the researcher to demonstrate the analytic process to an outside observer (Hall & Stevens, 1991). The "auditability" in this study has been achieved by clearly written descriptions of the analytic process, retention of transcribed data and written analytic memos, and researcher adherence to the methodological techniques set forth by experts in studies using grounded theory. Memos written by myself and by my supervisory chair relative to the interpretive





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analysis of the data have also been preserved. Evolution of raw data into conceptually related categories can be traced via dated memos and chapter drafts, and is subtly present through the use of constant comparison of concepts and categories. Fittinaness Of The Data

Study findings should be meaningful and applicable to both

participants and others with contextually similar experiences. Study findings should fit the data from which they are derived, and conceptual analysis generated from the data should accurately relate to the description. During actual data collection, I frequently asked participants if they agreed with statements made by a previous participant. Often they did, and they usually elaborated further by recounting their own personal experiences. Sometimes they did not agree with my interpretation, and would then articulate the differences so that I could better understand what had been said or what was being said.

Summa-ry

This chapter has outlined the method that was used for this study on chronic nonmalignant pain among older adults. Grounded theory, undergirded by symbolic interactionism, was chosen to best





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learn about older adults' experience with chronic nonmalignant pain. Sampling considerations, data collection, data recording, and data analysis were described. The various components of scientific rigor were reviewed, including credibility, consistency, and fittingness of the data. The following chapters focus on the analytic review of participant data, out of which a substantive theory on chronic nonmalignant pain among older adults was generated.












CHAPTER FOUR
PAINFUL AGING: THE BASIC SOCIAL PSYCHOLOGICAL PROBLEM Introduction

An essential component of grounded theory is the

identification of a basic social psychological problem (BSP) that is common to, yet unarticulated by, the group involved (Glaser, 1992). Grounded theorists seek to explain and understand how individuals define their reality, and presume that a BSP is central to that reality. The participants in this study shared the common circumstance of being older (at least 63 years) and experiencing chronic nonmalignant pain. Duration of their pain ranged from four months to over two decades. As a group, these participants found living with chronic nonmalignant pain difficult, and believed their age aggravated both the pain itself and its effects. Participants reported that they expected more pain because they were older, and believed their pain occurred more frequently than among younger counterparts. Participants believed that the "deadly combination" of chronic nonmalignant pain and aging produced a synergistic effect that exaggerated their suffering, compromised their health and 55





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redefined their lives. They developed explanatory models to better understand their painful aging, and shared their perceived consequences related to painful aging. Data revealed that it was the combination of pain and aging that centrally defined the participants' reality, therefore I conceptualize the basic social psychological problem as painful aging.

Painful Aging

Older adults participating in this study all lived with chronic nonmalignant pain, and they consistently referred to their painful discomfort as "getting old". Their pain was a "not so gentle reminder" of advancing age, a symbolic representation of growing vulnerability that was then associated with old age. As one participant summarized, "when you don't feel good physically, you begin to wonder why, and when you are seventy-one, the first thing that naturally comes to mind is that you must be getting old." This linkage of pain and aging is a familiar concept, because even young people report "feeling old" when not feeling good. Yet presuming that pain and aging always coexist is inaccurate. It is because these participants were indeed older that their remarks essentially validated and perpetuated this common association.





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The enduring presence of chronic nonmalignant pain heightened participants' awareness of their own advancing age. Chapman & Syrjala (1996) theorize that pain is a dual phenomenon, proposing that the perception of painful sensation is then followed by an emotional reaction. This was the case among these older adults. Uncomfortable sensations related to chronic nonmalignant pain precipitated the common reaction of feeling old. Some participants believed their pain was "ordinary", common, and a necessary accompaniment to aging. Others believed their pain was extraordinary and unique, an unfortunate development further aggravated by aging. In either case, the experienced phenomenon of pain merged with their knowledge of personal age, and collapsed into a basic social psychological problem of painful aging.

Participants' basic descriptions of chronic nonmalignant pain itself were not age related, because pain specific variables such as location, intensity, quality and duration closely resembled pain descriptions among individuals of any age. Essential differences came from believing that their pain and the circumstances surrounding their pain was disproportionately aggravated by advancing age. The cumulative effect of multiple pain locations led





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older adults to believe that they had greater pain than when they were younger. As additional painful locations were identified, participants sensed that their pain was "growing" over time. Participants believed their older age contributed to an increase in pain, but it also contributed to lessening stamina and reserve. Participants had less confidence in their own abilities of recuperation. For them, it felt as if they were fighting a losing battle. As one individual summarized, the chronic pain makes me It older and sicker".

Expecting Painful Aging.

Participants all reported hearing comments from their

physicians, families, and peers which led them to expect that pain goes along with getting older. Frequent conversations with others validated a common socially constructed association between pain and aging. They also believed themselves similar to their contemporaries because friends and relatives reported comparable experiences. Dismissal of the pain was routine, accompanied by questions such as "what do you expect at your age?" Repeatedly hearing these kinds of remarks led participants to believe that painful aging was inevitable.





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Expecting painful aging led to increased tolerance. Popular lay publications (Cousins, 1979; Siegel, 1986) and some research based studies have suggested that individuals live according to their expectations (Barsevick & Lauver, 1997). Participants in this study frequently mentioned their expectations of painful aging as they spoke of their own experiences. Reviewing his experience with pain and aging, one man explained "I never used to have pain ... but it comes with the territory as you get older". Others echoed this sentiment.

You've got to expect a certain amount of this when you get older. With the arthritis and all, I mean, we all slow down
some, kind of fall apart, and get stiffer and creakier ... I expect
that, and I can deal with it.

The expectation of painful aging blurred distinctions between normal and abnormal for these study participants. It was a state of being, becoming as one ninety-two year old man said, "one of those things, like being hungry or being tired". Still, at least one woman was able to articulate that there were limits to what she could tolerate.

Arthritis is what I expect. This other stuff I don't expect.
Arthritis is like, well, being stiff in the morning, but you
can work it out. Arthritis is like achy, or sore. But this other, it's not arthritis, it's pain, and I don't expect that at all, and
I shouldn't have to put up with it. But that's the way it is I





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guess. But I don't think it's normal, and I don't think it should
be part of the package of getting older.

When painful aging became intolerable, participants struggled to find relief. Going to bed, relaxing, resting, and reclining were immediate choices. Once the painful flare subsided, they resumed their daily routine. Each had personally defined limits of pain endurance, but unrelenting discomfort was still an expectation of daily living.

Perceivinci More Pain

One seventy-year old man suggested that chronic nonmalignant pain was more problematic among older adults because there was Ci more of it". He was referring to the additive effect produced by several coexisting "pain spots" rather than any singular source of discomfort. "Pain is pain. You just get more of it when you are older." Study findings supported his statement. Participants reported an average of at least four different painful areas, and rated their current pain between three and eight when using "0" to reflect no pain and "10" to reflect the worst pain intensity. The accumulation of multiple pains led participants to associate increasing pain with increasing age. They believed that their pain





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was "growing" over time, and a continued inability to find relief led them to expect that their pain would "never end".

In addition to multiple pain locations, participants reported that the steady persistence of their pain, its "infinite staying power", was troublesome. As one woman explained, her pain "hasn't been on and off, it's been on. It's just always there." According to another, the pain "just kind of sets in". Ongoing pain was a continual intrusion, robbing each individual of his or her current and future wellness. As one participant concluded, the pain "never gets any better. I mean, I don't see it getting better in my future any more ... it gets a hold of you, and then it stays on."

For some, chronic nonmalignant pain was more sporadic than it was consistent, and so the persistence of pain was revealed in its continual recurrence. For them, the pain was like "a cat you throw out to the barn and hope it will stay away, but no, it always comes back". Everyone hoped their pain would go away forever, but no one ever thought that would happen. Even during episodes of relative comfort, participants knew that their pain would "always come back". Unrelenting pain with no anticipated relief, "no chance for





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parole", was depressing and discouraging. Participants developed explanatory models to better understand what was happening.

Explanatory Models of Chronic Nonmalignant Pain and Aging

Discomfort due to chronic nonmalignant pain did not conform to past experiences with acute pain. Some were exhausted by the constant "aching" and "creaking" of painful joints, others were tormented by the repetitiveness of intermittently recurring it attacks". Pain's alien presence set them apart from others. Participants developed logical explanations about why their pain existed and persisted to help them understand their experience. Some attributed their pain to overall physical decline, some ascribed their pain to an unusual structural reconfiguration brought on by disease or injury, and others interpreted their pain as symptomatic of chronic illness. Participants' own interactional and personal experiences informed their understanding of pain, and references to their older age always accompanied their explanations. Physical Decline

Most older adults participating in this study attributed the persistence of chronic nonmalignant pain to ongoing physical decline. Participants described themselves as "physically falling





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apart". They also described how their physical status worsened over time "like the powerful ocean waters that wear down rock", and led to bodily "disintegration" and "decay". Participants believed this deterioration was a general consequence of aging, it was natural and inevitable. Inventorying his body, one man reported "I think you just start failing apart, little by little. Your back, your teeth, your eyes. It all goes."

Pain descriptions among these older adults primarily reflected an understanding of degenerative changes within their spine and their joints. Chronic back pain was an almost universal complaint, and participants strongly associated their pain with aging. Their crumbling vertebrae most closely resembled a disintegrating process, "wearing down" over time. One man described the anatomy of his backbone by saying "there's bone on bone there ... there's just nothing left ... all the vertebras are just all broken down and all. Just decaying ... I can tell, because I shrunk so."

Knee pain and neck pain were also common, attributed to

arthritis or traumatic injury, but always believed to be aggravated by advancing age. Nagging and lingering pains were annoying, and led to frustration, "misery", and overwhelming fatigue. Some





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individuals described several painful locations, reporting variations on a main complaint or mysterious combinations of fleeting pain. One man called his pains "ambulatory", because they traveled to different areas within his body. Since most participants had not experienced any discomfort when they were younger, they believed that aging directly contributed to their pain because the movable connections between bones wore down with time and continued usage. Those who had experienced pain during their younger years related worsening pain as they grew older. Discomforting sensations might "set in" for awhile, others would "come and go", leaving participants at a loss to explain how or why. They only knew they were "wearing down" and "wearing out".

Study participants believed that the process of physically falling apart could not be arrested or reversed. Paralleling their perceptions of physical decline were alarming compromises in self image. One participant was able to articulate this perception when he said "one time, when I stood up ... it felt as though my hip might disintegrate. And when I felt that, it was like I might disintegrate along with it." Physically failing apart was threatening, because a trajectory of physical decline compromised independence and





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functionality. Participants believed this downward decline would progress over time, accentuating poor health and accelerating death. Structural Reconfiguration

Several study participants believed that disease or disability had irreversibly transformed and reconfigured their bodies and their lives. They focused upon specific structural deviations within their bodies rather than a general nonspecific deterioration. The pain arising from nervous tissue damage, neuropathic pain, was a common example. Neuropathic pain was described as exquisitely excruciating, with "shooting" and "stabbing" qualities that overwhelmed to the point of "sheer anguish". The lancinating pain accompanying sciatica, amputated extremities, and heretic attacks were common examples.

A lot of times I have this horrific pain that shoots through
me like a lightening bolt. It's like a red hot wire that enters up here at the top of my neck, then it goes down my back to
about the base of the scapula, then in separates so that it
turns into two wires that go around here on both sides ...
and when you have these kinds of pains that don't go away, then you're the one that gets to know them best ... you have
to live with it and you can't run away.

One individual ascribed the fiery pain arising from his damaged nerves to "faulty wiring". He was essentially describing how his





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nerve pathways had been reconfigured, metaphorically comparing his nervous system pathways to electrical wiring.

These descriptions of neuropathic pain readily conformed to

classic pain syndromes known to and described by their doctors, but participants were mystified. Participants considered these intensely painful sensations abnormal, and transferred that sense of abnormality to include their entire body. As one participant stated, "I know I'm different. Normal people don't have anything like this ... my whole system is a little off." No one expected resolution of their pain because they believed their bodies were irreversibly damaged. Because painful attacks recurred intermittently, participants projected an undulating trajectory of continued pain. Disease Prociression

A few study participants interpreted chronic nonmalignant painful symptommatology as a function of previously diagnosed chronic disease. Their conditions included cardiovascular disease, hepatic insufficiency, Parkinson's disease, and peripheral vascular disease. Similar to those who attribute their cancer related pain to a growing malignancy, these participants believed that increased pain signaled disease progression and worsening health. Common





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examples included chronic anginal "pressure", deep visceral fullness, "paralyzing" headaches, and cramping ischernic pain. All were painful sequelae arising out of known illness, and participants "knew" that the frequency and severity of their pain would only increase as their illness progressed over time. They projected dual trajectories of escalating pain and disease that would continue until death.

Participants' interpretations regarding their chronic pain did not always match those of their physicians and nurses. Once attributed to disease, participants continued the interpretation because the pain "felt the same". Physicians and nurses, however, would disagree in the absence of other confirmatory findings. Chronic angina was a typical example.

Chest pains ... they come on a lot, and they used to scare me. I
guess they still do, but not as much. I've had two heart
attacks, and it always feels the same, even when it turns out not be a heart attack. Always feels the same, funny how that
is. So see, I can't tell the difference. But I been to the
emergency room a lot when they just sent me home, and so now I kind of wait it out, you know. Then if it doesn't go away after
awhile, then I'll call ... I never know if it's going to be the real thing or not ... Doctor told me that it's not really my heart, but
I think he's just saying that. I mean, I've had two heart
attacks, so for sure there is a problem.





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This lady was convinced that her pain came from a "bad heart", yet she learned to "wait it out" because electrocardiographic tests and laboratory results did not always confirm her intuition. Another participant related a similar experience, saying that he endured daily occurrences of "tightening" and "pressure", and took sublingual nitroglycerin so frequently that it was "like eating candy". Even though his doctor told him the pain was not cardiac related, he predicted a worsening heart condition that would kill him one day when "the big one" came, meaning a fatal heart attack. Participants with chronic angina, and others with similar disease related pain, trusted their own intuition over professional opinion. It was among these participants that the deadly combination of pain and aging was the most threatening to their lives.

Painful fting as a-Deadly Combination

The interaction of pain and aging produced a synergistic effect. Pain intensified the effects of aging, and aging exacerbated the effects of pain. All too often, the "bad combination of things going wrong" seemed to worsen the pain as well as aggravate perceptions of getting older. Participants found that pain coupled with advancing age made them "feel old", assaulting their physical bodies and their





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mental constructions of self identity. They didn't mind "being old" as much as they minded "feeling old". One woman referred to a recent newspaper article when trying to explain the difference. "I saw this picture of a shirt in the paper this morning, I'd like to have that T-shirt, It says exactly what I think about getting old. It says something about 'I don't mind being older. I just don't want to be old.' That's me." Other participants agreed. One man asserted that he would be "twenty years younger if it weren't for this knee". For him, his pain was defining his age. An eighty year old man elaborated further. "Knowing myself as intimately as I do ... these pains assault my different body parts ... and the combined effects of age and pain [become] a deadly combination ... it slows me down, and ultimately dictates my life."

For these older adults, both chronic pain and aging were

deviant conditions that seemed to worsen over time. Chronic pain was believed to be common among older adults, even expected, but not really normal. Aging was also an expected, natural phenomenon, but not really normative because participants didn't really identify with an aging exterior body. Participants believed they were essentially the same as they had always been, the "inner essence





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that resides deep inside" was more representative of their true selves than any mirrored reflection. Convergence of the two deviant phenomena, pain and aging, became a "deadly combination" that was significantly problematic for these participants.

The Relationship of Pain and Aging

The question sometimes arose as to whether aging

precipitated pain or vice versa. Participants were unsure, and thought this was like asking if the chicken or the egg came first. For them, pain made you feel older, and being older made the pain worse. Each aggravated the other. Upon reflection, some decided that the natural process of aging affected the physical body in ways that then set the stage for chronic pain. In describing a perceived relationship of pain to aging, one participant noted that he had not experienced chronic nonmalignant pain until after the fifth decade of his life. Nor had he encountered any serious illnesses. For him, he believed that "structure precedes function. What you're looking at in the body are the effects of aging, not aging itself. And the aging is what leads to the body break down. Then comes the pain. Or at least that's how it is for me." Since being older seemed to preceded both his pain and his decline in health, this interpretation best explained





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his own experience. Many agreed, one individual noting "I wouldn't be like this except that I'm getting on [in years]".

When participants related years and even decades of chronic nonmalignant pain, they tended to reverse the relationship. These individuals described how pain limited their lifestyle which then forced them to "gear my existence to how I feel". For them, it was the pain that made them feel older, and longevity was only prolonging the duration of their pain. "When you can not move without pain, it affects your ability to grasp and deal with those things that might occur in day-to-day circumstances ... it makes you older." Ultimately it did not matter which came first. Participants focused on the sum total of their experience, and few tried to differentiate between the separate components of pain and aging.

Consequences of Painful Aging

Participants readily agreed that painful aging significantly impacted their lives. Pain itself contributed to fatigue, and compromised functionality. Participants described themselves as being worn out, and believed they were less resilient because of the combined effects of pain and aging. One lady tried to explain the interactive effects of pain and aging.





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[The pain is] worse and all because I'm older and I have a
heart condition, and of course the arthritis and such. So it's
worse that way, because one thing just kind of aggravates
another. But it's not brought on by age. I mean, I know that I
am the same age now as I was this morning, and yet this
morning it was really hurting for awhile, and I kind of felt
older I guess.

Participants noticed tendencies to decrease their activities in order to limit pain and fatigue, and they believed that they were increasingly vulnerable to further disease and injury. Efforts to modify and adapt their lives to multiple health concerns required flexibility, and led to their juggling of different priorities. Participants anticipated continuation of pain and a potential worsening of their health that was complicated by advancing age. Without exception, each participant in this study described specific situations of how pain and aging compromised their health, their functionality, and their overall quality of living. Wearing You Down

Study participants reported that chronic pain and aging were

both chronic sources of stress that were always "wearing you down" and making it "harder for me to deal with everything." As one eighty-year-old gentleman explained, "I never felt like I was particularly sensitive to pain, but after you've had so much of this





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stuff happen then it wears you down considerably ... and I can't bounce back." Even though this man felt that he had a high tolerance to pain, he admitted that over time, the energy required to constantly accommodate to the pain wore him down.

Believing the pain capable of infinite endurance, participants reported consequences of overwhelming physical and mental fatigue. Physically, lack of sleep and muscular fatigue weakened defenses against other compromises in health status. Mentally, the concentrated focus on pain itself contributed to irritability and inflexibility so that coping with other stressors was significantly impacted. One individual admitted that "I just don't feel good I hurt too much ... the pain just consumes me. I'm edgy all the time ... I think all the family knows that I'm hurting."

Other respondents reported being "grumpy", "irritable" and generally "less friendly" because of their hurting. They were no longer like themselves, the continuity of their personalities had been disrupted. Feeling "worn down" and "worn out" by pain, one man summarized the views of many when he said "I'm all worn out, and I'm just too damn tired to fight this thing all the time".





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Beina Less Resilient

Participants no longer had confidence in their physical powers of recuperation, and missed the "endurance" and "stamina" needed accommodate physical or emotional stress. Resiliency, the ability to flexibly manage stressors, is often considered a innate or learned trait linked with personality rather than external circumstances (Haase, 1997). Participants believed their survival through previous hard times testified to their resilient nature, yet they still admitted being "challenged" by painful aging. Painful aging could not be subdued, it eluded their best efforts to regain mastery over their lives. One seventy-year-old participant named "the resiliency issue" as the key to understanding what is so different about having pain and being older.

When I was younger, I had more stamina. I don't think I
would recover as well now, I just, don't have the reserves
necessary to heal myself as well. I guess I would say I
had more resiliency then ... I could bounce back. That's really
what's so different about being older.

Perpetual pain drained strength and energy. Participants felt worn out and exhausted, and worried that their fatigue left them vulnerable to other health problems. They believed that their experiences with chronic nonmalignant pain were common rather




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than unique, and each hoped that "someone, somewhere" would eventually discover ways to alleviate their pain. Doinci Less

Painful aging necessitated "slowing down", activity

restriction, and renegotiation of daily plans. Study participants learned to compromise, settling for "doing less" than they wished. Some limited their activities because of fatigue, others limited activities to avoid fatigue. Fatigue and pain intensified each other, forcing participants to avoid traveling to the "places you'd like to go" or curtail "the active things I've always done". As one man explained, "pain causes your body to really need more recuperative powers, and you can't get that when you're fatigued." Fatigue also accelerated the perception of aging. For example, one man related the he "used to be able to do things even in my sixties that I can't do now ... when you're older and you're in pain, you don't always have the get up and go, 'cause your get up and go has gone up and went."

One woman related that she was no longer "going to do like I was when was younger, maybe just about half". Another participant said that her friends called her a "hermit" because she always





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stayed at home. These older adults couldn't keep going like they used to do. For them, life was "closing down", and "closing in". Limiting Adventure

Participants' growing sense of needing to do less extended to include other lifestyle accommodations, such as limiting adventure. Being older and living with pain, participants described learned cautiousness about their behavior. They believed that it was important to take more responsibility about caring for themselves. Study participants were reluctant to risk impulsive activities that might prove harmful. "There are certain things that you just don't do." Examples included "dancing all night and having a really great time" or "taking a long hike in the woods" by yourself. Another gentleman set aside his long held wish to visit China, stating that he no longer felt that it made any sense to go "where I don't know the language ... there aren't any of the comforts I'm used to," and "civilized" health care would be inaccessible if needed. These older adults learned to enjoy solitary or social activities that were safer yet still satisfying. Writing a book, painting, reading, and socializing with friends were frequently mentioned. Participants also related





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being wary of tackling strenuous home repairs, or embarking upon "foolish" adventures that they might once have done. Increasing Vulnerability

A universally reported concern was the fear of falling.

Participants felt less agile and more prone to tripping, and most knew of friends who had suffered frightening consequences because of a fall. Falling also represented more than potential injury; it precipitated shame and embarrassment and threatened self identity. "They would say look at that old man just laying there... so I tell my wife to go through the house and eliminate all the road hazards".

Most individuals associated increasing age with increasing

vulnerability to disease or injury. Study participants believed that aging reduced their abilities to overcome poor health. Symptoms from one health problem aggravated another, and then another; repeating and accumulating in a spiraling effect until one might feel as if one were "circling the drain". A few participants sought to decrease vulnerability to disease by ingesting foods and herbal teas or vitamins that could provide "the basic building blocks" needed to stay healthy. Others tried to remain active, believing that physical





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exercise could optimize wellness. Most participants, however, were not able to convey an effective plan to combat their vulnerability. Juggling Multiple Health Concerns

In addition to chronic nonmalignant pain and advancing age,

each study participant described multiple ongoing health conditions that necessitated changes in daily living habits. Non insulin dependent diabetes, digestive disorders, and cardiac or peripheral vascular problems were frequent conditions requiring daily medication and lifestyle accommodation. Prioritization of these conditions sometimes competed against each other, triggering anxiety and confusion. Study participants sometimes disagreed with health care professionals over the relative importance of their health conditions. For one man, his most immediately distressing pain symptom ranked higher than the more subtle signs associated with long term problems.

[They] always want to talk about my diabetes, and my heart.
And well, I know they're big problems ... But I can live with
them, or at least I can live with them right now. But this
back, that's my biggest problem. Not to them, but to me. And it seems like if that's the biggest problem to me, then that's
what we should be working on ... Doctors ignore [my back pain]
because they can't do nothing about it. But me, I don't have that
luxury. I can't ignore it. It affects me 24 hours a day.





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Juggling these multiple health concerns seemed to result in a "loselose" situation for participants. The constant shuffling of multiple and sometimes conflicting treatment strategies became perplexing dilemmas with no easy answers.

Participants believed that chronic nonmalignant pain both

initiated and prolonged poor health. One individual said that "to me, that's what is ruining my health." Another added "your health is like slipping away, and the pain just makes your health so much worse ... the pain is really killing you, in the big picture." Chronic pain was felt to aggravate and accelerate other health problems, so that "when one thing starts then another starts, and another." For these older adults, chronic pain symbolized poor health, it was more noticeable than some of their silent conditions such as hypertension or diabetes.

Sensing an Uneasv Future

Participants were uneasy about their future. They projected a downhill trajectory of increasing pain coupled with a decreasing life expectancy. One woman stated I know I won't live very long, I just won't." Dreams of longevity were now tempered with fears about a painful and premature death. Expecting their pain to continue for the





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rest of their lives, participants were ambivalent as to whether a shorter future was good or bad. They wondered aloud "how bad can it get?"

Some participants admitted contemplation of their eventual demise at great length. They could reflect at length on life, and talked with relative ease about the subject of death. Painful aging was interpreted as a way of preparing for death. One participant described the experience as "fading away". For one man, only death could "release" him from his suffering. For another, it felt as if he was reaching "the finishing line" of life. Study participants who talked openly about death shared a strong faith in God. Alluding to eternal life after death on earth, they were not afraid. They did not think their life would "come to a screeching halt". Instead, they were comforted in knowing that "greater things await in heaven".

Others were openly discouraged about their current "state of affairs" and worried about their future. Some participants were disappointed in their apparent "bad luck" and others were angry that no one could help them live more comfortably. One eighty-year-old man said he felt victimized by his pain, saying "I don't like to be victim to anything or anyone, but this pain kind of keeps me there."





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He went on to say I always thought that my life would be somehow more of what it was always like. But it's not ... I never thought my life at eighty would be filled with back pain and continuous doctor visits." His anticipation of vacation cruises and pleasurable living after retirement had been replaced with unrelenting pain and misery. His pain was "killing" him, and his frustration at being unable to change his circumstances made him angry.

As participants reflected upon their painful experiences, or contemplated their future, they frequently mentioned the lack of adequate treatment strategies available to them. They believed that their lives could be greatly improved, if only for a short while, if their pain could be lessened. Significantly, very few of the older adults participating in this study had been able to find physicians, nurses, or therapists who offered them any hope.

Professional Indifference

Study participants consistently found that reports of chronic pain unrelated to a diagnosis of malignancy or any major disabling disease were treated by health care professionals with indifference. Participants were baffled by their clinicians' professional nonresponse, but a review of medical literature uncovered a probable





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explanation. Until early in this present decade, chronic nonmalignant pain was labeled "benign" pain (Bonica, 1990). Furthermore, medical texts reported less sensitivity to pain and increased tolerance among older adults (Harkins & Price, 1992). From this perspective, the medical community agreed with one physician who explained, "there is convincing evidence that painful deterioration is inherently programmed over time", yet in general "they [older adults] seem to adapt fairly well." Allied health professionals followed the lead of their medical colleagues, perceiving little impetus to address a nonproblematic concern or correct what was believed to be "essentially normal".

Refuting conventional medical wisdom, study participants

reported a high sensitivity to chronic nonmalignant pain, intolerance rather than tolerance, and disastrous effects caused by the pain. However, participants found health care professionals to be uniformly less than helpful. Participants knew about successful treatments for even the most complicated of health problems, so why wasn't anything available for them? This paradox perplexed them. "All those specialists ... what good are they? It shouldn't take a rocket scientist to figure this out. They've got all this fine





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education, all this experience, you can't tell me that there isn't others like me."

While the lack of available medical expertise was discouraging, the lack of sympathetic understanding was distressing. "You get the impression that they [physicians] could care less. Participants' plea to the community of health care professionals was for compassion.

If I come to you and say that I hurt, don't tell me it's nothing.
If I say that something is hurting, then that means something
is wrong. It's not just in my head, it's something that won't go away, and I worry that it might be a really bad or terrible thing. After listening and really caring about what I have to say, explain to me what my options are and what you think I should do. Don't just say 'um hum' and write a prescription.
My pain means more than that.

Living with chronic nonmalignant pain was difficult for study participants. They found few resources available to assist them and fewer that were sympathetic to their problem. Most of these older adults no longer believed that others could help them. Instead, they focused on their own responsibility to "stay creative", "be attentive", and "keep on top" of their pain. When even their own efforts at seeking relief failed, participants believed there was no further recourse. Not knowing what else to do, they endured.





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Summary

This chapter reviewed study participants' perceptions related to chronic nonmalignant pain and aging. They consistently linked their pain with their age. Some participants believed their pain necessarily accompanied aging, others associated their pain with an ongoing medical condition that was further aggravated by aging. Because of their advanced years, participants believed they endured more pain that was consistently met with professional indifference. Chronic nonmalignant pain was stressful, and these study participants believed that they were less able to "bounce back" from its effects. They developed explanations about their pain etiology and projected trajectories about its duration. Chronic nonmalignant pain wore them down and contributed to poor health.

Theoretical analysis of merging relevant concepts produced

the basic social psychological problem of painful aging among study participants. Painful aging was believed to be a deadly combination that was expected and endured. Its consequences included wearing down, being less resilient, doing less, limiting adventure, increasing vulnerability, and the juggling of multiple health concerns.





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Participants saw a shortened future, and wondered aloud if painful aging was actually a way of preparing them for death.

This chapter laid the groundwork for the following chapters addressing the basic social process used by participants to deal with the problem of painful aging. The older adults participating in this study utilized the basic social psychological process of marking time to redefine their time perspective. Marking time was a way of rethinking how they perceived the passage of time while enduring the experience of painful aging. Painful aging profoundly affected the lives of these study participants, and it is through their experiences that others may begin to understand this complex phenomenon.












CHAPTER FIVE
MARKING TIME: THE BASIC SOCIAL PSYCHOLOGICAL PROCESS

In the previous chapter, I described how chronic nonmalignant pain combined with advancing age to produce the problematic concern of painful aging. In this chapter I explicate how painful aging heightened participants' awareness of time, its presence and its passing. Painful aging also destabilized how time was ordered and how it progressed. Participants recognized that "time just keeps going on, just keeps ticking away", but they also recognized that circumstances could alter its perception. As one sixty-seven year old said, "time keeps going, it's what I do with the time is what's different". Participants went through the basic social psychological process of marking time when redefining time perspectives. Marking time wasn't a conscious decision to think differently about time, it was more of an instinctive process of refocusing and rethinking about time that arose as participants became more aware of their painful aging. Subprocesses of marking time include recognizing personal mortality, living day to day, and forecasting an uncertain




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recognized that their pain and age-related circumstances kept them from moving forward through the time remaining in their lives. Participants went through the basic social psychological process of marking time as they redefined their time perspectives. Marking time wasn't a conscious decision to think differently about time, it was more of an instinctive process of refocusing and rethinking about time that arose as participants became more aware of their painful aging. Subprocesses of marking time include recognizing personal mortality, living day to day, and forecasting an uncertain future. Exploration of these subprocesses will be presented in the following chapter.

Definitions of Marking Time

When someone says they are "marking time", others generally interpret this phrase to mean that no progress is being made, and one is awaiting future developments (Neufeldt & Guralnik, 1988). Prisoners employ the process of marking time while they are awaiting release, as do military personnel while awaiting discharge. Employees sometimes mark time while waiting for their shift to end, and students occasionally mark time while anticipating the ring of a school bell. Sick people find themselves marking time before- a





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diagnosis is made, and frail elders mark their time before death. In each situation, the phrase "marking time" includes a heightened awareness of time itself and a perceived lack of forward progression through time while waiting for something to happen.

In this study, participants used the phrase "marking time" to describe their own struggle with the passage of time. Advancing age reminded participants of their limited future, and pain narrowed their focus to a day by day existence. They waited for present time to pass: they awaited an uncertain future. Participants could not resolve the problematic concerns associated with painful aging, and could not resume the lives they had once led. They believed that chronic nonmalignant pain was wearing them down, and increasing age lessened their ability to overcome resulting disability. Marking time described their efforts to move through time when time itself seemed to be standing still.

Participants offered their own definitions of marking time. They explained that "when you're marking time you're not going anywhere ... everything is just stopped. You're waiting until something happens and you can go on." One participant used a military analogy, defining marking time as a process of "marching in





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place and going through the motions, but not really going anywhere." An eighty-two-year-old drew upon his own experience with pain and illness to define marking time. He believed that marking time implied a state of existing in the present while awaiting some kind of outcome. According to him, marking time meant "you're not really living. It's not like you can plan any future or really do anything, you are just existing." So it was for most study participants, because painful aging immobilized them physically and emotionally. They were marking time until something happened to change a persistent state of being.

Some participants included the anticipation of change into

their definition of marking time, believing that "everything revolves around that particular event you are marking time for". When they were suffering, they hoped for pain relief. When they were comfortable, they worried about when the pain would return. If they believed they couldn't go on, they prayed for death. Participant definitions of marking time reflected personal knowledge; their definitions were embedded within the context of their lived experience. Marking time was more than an abstract phenomenon to





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them, it was a phrase that summarized how they thought of time while enduring the experience of painful aging.

Marina Time and Enduring Time

Participants' experiences with painful aging forced them to

endure increasingly painful and distressing circumstances. Enduring is defined as the capacity to last or get through an experience or intolerable situation (Morse & Carter, 1996). Some participants lived with gradually deteriorating changes and others experienced abrupt fluctuations in sensation or function. Painful aging destabilized participants' confidence in their ability to endure both present and future. They did not know how they could get through some situations, or last through others. One participant explained that he had always been "the strongest person I've ever known" until his back pain forced him to question whether he could even attend to his personal needs. Another stated how "amazed" she was that she could keep on going despite her "awful nerve pain". Participants sensed the need to keep enduring for as long as necessary, and marking time was the process that could facilitate their endurance.

Morse and Carter (1996) identified three types of enduring;

enduring to survive, enduring to live, and enduring to die. Enduring to




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GENERAL AUDIENCE ABSTRACT
Painful Aging: The Experience of Chronic
Nonmalignant Pain Among Older Adults
Continuous or recurring pain associated with chronic disease or
persistent injury is called chronic pain. Twenty-five older adults
(63-93) were interviewed about their experiences with chronic pain
unrelated to cancer. The combined effects of persistent pain and
increasing age contributed to what this researcher called the
problem of “painful aging”. Older adults participating in this study
believed that painful aging exaggerated suffering, compromised
health, and changed how they thought of present and future time.
When they were suffering, they waited for painful time to pass.
When they were comfortable, they worried about when the pain
would return. Their increasing age and continued pain forced them to
consider a shortened future. Marking time was the process that best
described how these older adults moved through time when time
itself seemed to be standing still. Findings provide a basis for
nurses to offer more guidance and support to older adults who find
themselves enduring the problem of painful aging.

PAINFUL AGING: THE EXPERIENCE OF
CHRONIC NONMALIGNANT PAIN
IN OLDER ADULTS
By
MARY KATHLEEN EBENER
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
1998

Copyright 1998
by
Mary Kathleen Ebener

ACKNOWLEDGMENTS
I am grateful to the many people who supported and
encouraged me during my doctoral studies. Their support helped
make this endeavor possible.
I would like to thank my committee chair, Dr. Sally
Hutchinson, for her thoughtful critiques and continuing
encouragement.
I would also like to thank the other members of my
committee, Drs. Kathy Bloom, Kathleen Smyth, Jo Snider, and Jay
Gubrium, for their expertise and guidance.
This dissertation would not be possible if it were not for the
insightful contributions by those older adults participating in this
study. I extend to them my deepest appreciation and grateful
thanks, and I hope that someday, somehow, their pain can be
alleviated.

TABLE OF CONTENTS
page
ACKNOWLEDGMENTS in
ABSTRACT v i i i
CHAPTERS
OVE INTRODUCTION 1
Pain Categories 2
Chronic Nonmalignant Pain 3
Previous Studies 5
Purpose 8
Theoretical Framework 8
Guiding Research Questions 9
Significance of the study for nursing 10
TWO REVIEW OF THE LITERATURE 12
Concept Analysis 13
Perceived Pain Experience 15
Pain Rating Scales 16
Pain Language 17
Assessing Perceived Pain 18
Impact on Quality of Life 2 0
Compromised Functionality 21
Lifestyle Changes 2 4
Suffering and Enduring 2 6
IV

page
Theoretical Perspective 2 7
Symbolic Interactionism 2 8
Multiple Interpretive Perspectives 31
Summary 3 3
THREE METHOD 3 5
Sample and Setting 3 6
Sample Selection 3 7
Interviews 3 8
Sample Description 3 9
Adequacy of the Sample 4 0
Procedure for Protection of Human Studies 41
Potential Risks 4 2
Potential Benefits 4 2
Data Collection 4 3
Data Recording 4 5
Data Analysis 46
First and Second Level Coding 47
Selective Coding 4 8
Constant Comparison 4 9
Maintaining Rigor 5 0
Credibility Of The Data 51
Consistency Of The Data 5 2
Fittingness Of The Data 5 3
Summary 5 3
FOUR PAINFUL AGING: THE BASIC SOCIAL PSYCHOLOGICAL
PROBLEM 5 5
Introduction 5 5
Painful Aging 5 6
Expecting Painful Aging 5 8
Perceiving More Pain 6 0
Explanatory Models of Chronic Nonmalignant Pain
and Aging 6 2
Physical Decline 6 2
Structural Reconfiguration 6 5
v

page
Disease Progression 6 6
Painful Aging as a Deadly Combination 6 8
The Relationship of Pain and Aging 70
Consequences of Painful Aging 71
Wearing You Down 7 2
Being Less Resilient 7 4
Doing Less 7 5
Limiting Adventure 76
Increasing Vulnerability 7 7
Juggling Multiple Health Concerns 7 8
Sensing an Uneasy Future 7 9
Professional Indifference 81
Summary 84
FIVE MARKING TIME: THE BASIC SOCIAL PSYCHOLOGICAL
PROCESS 8 6
Definitions of Marking Time 8 7
Marking Time and Enduring Time 9 0
Waiting For Something To Happen 9 3
Anticipating Pain Relief 9 4
Anticipating Pain Return 9 6
Anticipating Death 9 8
The Private Experience of Marking Time 9 9
Socially Unacceptable Topics 102
Partial Disclosure Using Humor 103
Private Misunderstandings 105
Summary 107
SIX SUBPROCESSES OF MARKING TIME 109
Recognizing Personal Mortality 109
Aging and Mortality 110
Physical changes 111
Social changes 112
Social structural changes 113
Pain and Mortality 114
vi

page
Gradual decline 114
Episodic decline 115
Redefinition of Lifespan 116
Living Day to Day 117
Flexible Time 118
Day to Day Suffering 119
Painful and Pain-Free Time 122
Waiting out painful times 124
Cherishing pain-free time 125
Forecasting An Uncertain Future 126
Uncertain Timing of Death 128
Wanting To Die 130
Struggling To Live 132
Marking Survival Time 133
Summary 134
SEVEN SUMMARY AND RECOMMENDATIONS 136
Summary 136
Recommendations For Practice and Education ... 138
Routine Inquiry About Painful Aging 139
Assess and Document Pain Reports 140
Demonstrate Professional Concern 141
Listen For Indications of Marking Time ... 142
Recommendations For Further Research 143
APPENDICES
A WRITTEN INVITATION TO PARTICIPATE .... 148
B INFORMED CONSENT 149
C INTERVIEW GUIDE 154
D PAIN QUESTIONNAIRE 156
REFERENCES 158
BIOGRAPHICAL SKETCH 168
vii

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
PAINFUL AGING: THE EXPERIENCE OF
CHRONIC NONMALIGNANT PAIN IN OLDER ADULTS
By
Mary Kathleen Ebener
May, 1998
Chair: Sally Hutchinson
Major Department: College of Nursing
Chronic nonmalignant pain is known to be more prevalent
among older adults, yet it is commonly underappreciated and
undertreated. Interview data from twenty-five older adults (63-93)
and five health professionals were analyzed to generate a
substantive theory about painful aging using grounded theory. Older
adults shared how their struggle with persistent pain and
increasing age produced a synergistic effect that exaggerated their
suffering, compromised their health, and redefined their lives. The
deadly combination of pain and aging centrally defined their

reality, and is termed “painful aging”. Painful aging heightened
participants’ awareness of time, its presence and its passing. When
they were suffering, they waited for painful time to pass. When
they were comfortable, they worried about when the pain would
return. They increasingly acknowledged a shortened future. Marking
time was the basic social psychological process that best
described participants’ efforts to move through time when time
itself seemed to be standing still. Subprocesses included
recognizing personal mortality, living day to day, and forecasting
an uncertain future. Findings provide a basis for nursing
interventions that can offer needed guidance and support to older
adults who endure painful aging.
IX

CHAPTER ONE
INTRODUCTION
It is estimated that as a group, persons 65 years and older
experience twice as much pain as their younger counterparts (Crook,
Rideout, & Brown, 1984; Ferrell, 1991; U.S. Department of Health and
Human Services [USDHHS], 1994). Pain among older persons comes
from acute conditions, malignancy, and chronic degenerative changes
that are often refractory to usual treatment measures. Multiple
coexisting health conditions significantly impact its frequency,
further complicate its treatment, and often discourage aggressive
pain management options because of potential side effects
(Belleville, Forrest, Miller, & Brown, 1971; Kelly & Raj, 1994). Fearing
iatrogenic complications in the aged, many healthcare providers are
reluctant to offer pain treatment unless an individual repeatedly
insists that something must be done. Because of providers’ hesitancy,
older adults persevere while living with pain that remains largely
untreated (Conaway, 1995; Harkins, Price, Bush, & Small, 1994;
McCaffery & Ferrell, 1991).

2
Pain Categories
Descriptions of duration, location, and etiology are typically
used to classify pain. Acute pain corresponds to known physiology,
correlates with identified mechanical, chemical, or thermal injury,
and is expected to subside with healing. The pain accompanying cancer
is generally associated with tumor growth or treatment related side
effects, often eliciting perplexing pain symptomatology. Clinical
guidelines have been developed to facilitate diagnosis and treatment
of both acute pain and cancer related pain (USDHHS, 1992, 1994), but
the absence of any guidelines related to chronic nonmalignant pain
confirms the lack of professional understanding in this area. It is
chronic pain that typically eludes medical diagnosis and defies
definitive treatment. Why similar pathology does not produce similar
responses remains an enigma.
Currently, chronic pain is defined as pain that persists for at
least one month beyond expected healing (Aronoff, 1985; Bates, 1996;
Bonica, 1990). When chronic pain is not associated with any
malignancy or diagnosable disease entity, it essentially becomes the
disease itself (Bonica, 1990). Chronic pain sometimes follows a
sentinel event (i.e., trauma), but it is often insidious in onset. Its

3
dominant features are persistence over time and a generally
capricious nature that eludes definitive treatment. Perplexing both
healthcare professionals and the individuals themselves, chronic
nonmalignant pain never serves any useful purpose (Bonica, 1990).
Among older adults, the incidence of chronic nonmalignant pain is
significantly greater than all other age groups (Hitchcock, Ferrell, &
McCaffery, 1994; Howell, 1994; McCaffery & Beebe, 1989).
Chronic Nonmalignant Pain
The chronic nonmalignant pain experience among older adults is
typically attributed to varied chronic health conditions, but clear
associations are lacking. Older adults themselves perceive that little
can be done to alleviate their pain, accepting recurrent or ongoing
pain as an inevitable part of the aging process (Ferrell & Ferrell,
1990; McCaffery, 1990; Watt-Watson & Donovan, 1992). Such
acceptance, or reluctance to complain, has been previously attributed
to a physiological decrease in pain sensation (Bonica, 1990; Cassell,
1995; Raj, 1986). However, there is no empirical evidence to support
this claim. Older individuals often assume that their pain can be
conquered by willpower and stoic tolerance (Herr & Mobily, 1991;
Watt-Watson & Donovan, 1992). They then seek assistance in

4
managing the resultant negative physiological and psychosocial
consequences of untreated pain such as altered mobility, impaired
sleep, and decreased immune system function (Ferrell, 1991;
McCaffery, 1990; Watt-Watson & Donovan, 1992). Some older adults
deny the presence of pain because they fear potential consequences
(Herr & Mobily, 1991; 1993) such as loss of autonomy, initiation of
expensive and time-consuming diagnostics, or confirmation of serious
illness and impending death. Failure to acknowledge these widespread
attitudes among older adults perpetuates undertreatment of their pain
(Davies, 1996; Gagliese & Melzack, 1997; Nadeau, 1993) and
undermines any attempts to differentiate what may be unique about
the experience of chronic nonmalignant pain among older adults.
Current emphasis on promoting and maintaining health care
within the community necessitates a closer examination of how older
adults negotiate their daily chronic nonmalignant pain experience.
Twenty-five older adults, whose ages ranged from 63 to 93,
participated in semi-structured interviews designed to explore their
chronic nonmalignant pain experiences. Participants speculated on
unique explanations for their pain, described symptoms, and
consistently associated their pain within an aging context.

5
Participants shared their perspectives about conditions prompting
treatment, use of specific strategies perceived as either effective or
ineffective, and their overall difficulties in accommodating both pain
and aging. Living with continued pain was found to be variously
problematic among these older adults, and their ongoing struggle in
addressing issues related to continuous pain and progressive aging
was revealed. Because chronic nonmalignant pain is so prevalent
among older adults, it is anticipated that their insight will guide
further efforts toward optimizing needed support and direction for all
older adults who experience chronic nonmalignant pain.
Previous Studies
Previous studies focusing on pain have generally excluded elders
over 65 years of age (McCaffery & Beebe, 1989; USDHHS, 1992, 1994).
Melding (1991) found that over 4000 publications on pain are written
each year, and yet less than 1% of these focus upon the pain
experience among older adults. Some articles addressed
pharmacological issues that arise among older adults during acute and
cancer pain management, but it is the anecdotal evidence suggesting
that older adults perceive their pain experience differently than
younger adults that merits further inquiry (McCaffery & Beebe, 1989,

6
Ferrell & Ferrell, 1991). Particularly in the setting of chronic
nonmalignant pain, older adults seem to have difficulty
differentiating pain from other kinds of unpleasant experiences
(Jensen & Karoly, 1992). It has also been suggested that for both older
adults and those experiencing chronic pain, adaptation to painful
stimuli is a learned response that leads to diminishing pain
perception over time (Harkins & Price, 1992; Harkins, Price, Bush, &
Small, 1994). In the absence of research based data exploring these
possibilities, a majority of healthcare professionals have been
allowed to assume that older adults tolerate chronic nonmalignant
pain because it is not significantly distressing to them. This study
challenges the above assumption by asking older adults themselves
about their experiences with chronic nonmalignant pain. Data revealed
that participants believe their remarkable tolerance to pain is not by
choice, but out of necessity.
Current literature also focuses upon interventions directed by
and provided by health care professionals (Hitchcock et al., 1994;
Ferrell, Ferrell, & Rivera, 1995). Numerous treatment
recommendations are distributed by professional organizations
(American Pain Society, 1992), governmental agencies (USDHHS,

7
1992, 1994, 1995), and private organizations (Arthritis Foundation,
1995), but scant attention has been paid to how older adults benefit
from these recommendations (Ferrell, Ferrell, Ahn, & Tran, 1994).
Anecdotal reports from older adults affirm that they frequently
minimize their discomfort by using over-the counter analgesics
(Taylor, 1985) and non-pharmacological therapies in a “trial-by¬
error” approach. What has not been previously explored is whether
these strategies are effective, or what conditions most significantly
influence consideration of treatment. The impact of chronic
nonmalignant pain upon functional status, quality of life,
relationships with others, spirituality, and perceived health
satisfaction has also been poorly understood. Further exploration of
these issues among older adults became the foundation out of which
the basic social psychological problem of painful aging was
identified. Examination of the social and psychological processes
utilized by participants to work through this problem of painful aging
led to a greater understanding of their problematic reality. Conceptual
analysis of the interrelated problem and processes then became the
framework supporting a substantive theory about chronic
nonmalignant pain among older adults.

8
Purpose
Primary emphases for this study included: (a) developing an
understanding of what chronic nonmalignant pain means to non-
institutionalized older adults, (b) learning what approaches are
commonly utilized by older adults to live with chronic nonmalignant
pain, and (c) finding out how the perceived consequences of these
approaches affect their lives. Participant data were then used to
generate a grounded theory explicating the basic social psychological
problem experienced by older adults who reported chronic
nonmalignant pain, and the basic social psychological processes used
to address the problem.
Theoretical Framework
A symbolic interactionist perspective is utilized in this study
to learn about how older persons perceive their chronic nonmalignant
pain. Symbolic interactionism is premised on the belief that human
beings act upon and interpret phenomena based on their meanings, and
that these meanings are both created and sustained through socially
interactive processes. Thus individuals perceive their pain
experiences through an interpretive lens, based upon understandings
about their pain that are influenced by healthcare professionals,

9
family and friends, and their own previous experiences (Davis, 1992;
Melzack & Wall, 1988). These contextually situated interpretations of
the chronic nonmalignant pain experience, additionally mediated by
cultural and religious beliefs, are further complicated by the dynamic
nature of the pain itself and perception of how the pain experience
affects other aspects of one’s life. Symbolic interactionism is thus
used to explore the chronic pain experience in a symbolic and
subjectively meaningful way.
The grounded theory method is utilized in this study, meaning
that participant data provided a foundation or “ground” for subsequent
elevation to a more conceptual level. Semi-structured interviews
with those older adults living with chronic nonmalignant pain have
illuminated previously unknown dimensions of the experience. A
substantive theory on how older adults live with chronic nonmalignant
pain has been developed as a result of this study.
Guiding Research Questions
Grounded theorists assume that people sharing common
circumstances experience shared meanings and behaviors (Hutchinson,
1986), and that these shared meanings constitute a specific social
psychological problem that is not always articulated. Guiding

10
research questions for this thesis were: a) What is the basic social
psychological problem faced by older adults living with chronic
nonmalignant pain? b) What is the basic social psychological process
used by older adults to address this basic social psychological
problem? and c) What are the phases, strategies, properties,
dimensions, and/or consequences of the basic social psychological
problem?
Significance of the Study for Nursing
Professional nursing is concerned with promotion of health,
illness prevention, and restoring health (Mitchell, Gallucci, & Fought,
1991; Watson, 1979). Key concepts include addressing an individual’s
responses to health and illness (American Nurses Association, 1980),
and caring for the individual in a holistic manner. In this study, there
was an assumption that older persons have incorporated various
strategies to live with their chronic nonmalignant pain. It was also
assumed that their efforts are poorly appreciated by others, resulting
in self care that is neither supported nor encouraged. Older adults who
live with chronic nonmalignant pain need nurses who can guide their
efforts toward self care and wellness while advocating on their
behalf.

11
Pain is a universally experienced phenomenon, and yet the
experience of pain is also uniquely perceived and interpreted.
Individualized responses to pain are within nursing’s professional
domain (Mitchell et al., 1991), and there is growing awareness that
optimal management of life with pain positively impacts every
dimension of perceived wellness. Developing and refining knowledge
of how older adults live with chronic nonmalignant pain will enable
nurses to realistically inform older adults about their pain
management options, skillfully assess their responses to specific
interventions, and support them in their efforts to achieve optimal
comfort and wellness. An expanded knowledge of the chronic
nonmalignant pain experience among older adults can improve patient
education, facilitate collaborative efforts to enhance older adults’
quality of life while living with chronic nonmalignant pain, and
strengthen the generation of a research-based practice within the
nursing profession.

CHAPTER TWO
REVIEW OF THE LITERATURE
The experience of chronic nonmalignant pain dominates the
body, mind, and soul in ways that are not completely understood
(Liebeskind,1991). Neural anatomy and physiology studies have well
described normal transmission of painful stimuli, and have
developed multiple explanatory models regarding aberrant nervous
conduction (Loeser, 1991; Melzack & Wall, 1988). However, this body
of knowledge can not address the cognitive processes which
transform biochemically mediated impulses into individualized
perceptions of pain. Psychosocial scientists continue to study the
cognitive, behavioral, and interpretive dimensions of pain, and their
findings validate clinical observations suggesting that individuals
uniquely interpret and redefine their pain based upon contextual
information (Merskey, 1986). Still, how older adults perceive their
chronic pain and then negotiate daily living based upon these
perceptions goes largely unrecognized because pain studies have
sometimes included but rarely focused upon older adults (Roberto,
12

13
1994). Current literature is reviewed that explores the subjective
concepts of chronic nonmalignant pain and its management, older
adults’ perceptions of their pain experience, and its subsequent
impact on quality of life issues. Recent studies describing how older
adults manage their pain are then summarized, followed by a review
of literature and rationale supporting the use of a symbolic
interactionist perspective and grounded theory methodology in this
study.
Concept Analysis
The continuous or recurring presence of chronic pain prompts a
renegotiation of how life is lived. Alleviation of pain, or managing in
spite of the pain, become major preoccupations (Donoghue & Siegel,
1992, Roberto, 1994; Thorne, 1993). When chronic pain is clearly
linked to a diagnosed malignancy, individuals usually consult health
professionals who then recommend specific pain management
strategies that are known to be highly effective (American Pain
Society, 1992; USDHHS, 1994; World Health Organization, 1990).
When chronic pain is less connected to any definitive etiology or is
described as non-specific headache, joint pain, or back pain, it is
probable that individuals do not always consult health care

14
professionals. Davis (1992) developed a concept analysis on the
meaning of pain management for persons experiencing chronic
nonmalignant pain. Her analysis was based upon a systematic
procedure suggested by Walker and Avant (1988). A model case was
developed using conversations from six respondents, demonstrating
the importance of motivational, cognitive, and sensory interaction
to successfully achieve modulation of pain intensity and its effects
upon other aspects of one’s life. Davis posited that contextually
defined strategies focusing upon sensory pain relief
(pharmacological and non-pharmacological measures) will be largely
ineffective unless cognitive, behavioral, and coping strategies are
also adopted. This inclusion of self efficacy as a necessary
component for successful chronic nonmalignant pain management
differs from the traditional focus on medication to achieve sensory
pain relief, but it may be the critical link that ultimately supports
and empowers effective life management while living with chronic
nonmalignant pain. Others who have studied the management of
chronic nonmalignant pain concur (Brown & Nicassio, 1987; Hanson &
Gerber, 1990; Nossell, 1996). Pharmacologic treatment can subdue
painful symptomatology, but cognitive efforts to enhance coping and

15
accommodate lifestyle changes are required to stabilize
accompanying emotional or physical distress. Better understanding
about how individuals act and perceive their pain experience is
needed, particularly among older adults since this growing
population is significantly affected (Ferrell, 1991; Gagliese &
Melzack, 1997; Roy & Michael, 1986).
Perceived Pain Experience
Clinicians and researchers have generally relied upon a variety
of surveys and instruments to find out about perceived pain. While
the literature always acknowledges pain to be a subjective
phenomena (Cassell, 1995; Ferrell, 1991; Griepp, 1992; Howell,
1994; Sullivan, 1995), there exists an overwhelming desire to
quantify its varied characteristics. Intensity, location, quality,
precipitating factors, mediating factors, and temporal factors are
all routinely assessed and then related to physical and emotional
functionality in an effort to describe the pain experience and
determine its etiology. Clinicians and researchers use quantitative
methods to compare individuals’ pain perception before and after
treatment, but difficulties in capturing pain’s multidimensionality

16
are always acknowledged (Choniere & Amsel, 1996; McGuire, 1984;
Melzack, 1975; Meredith, 1997).
Pain Rating Scales
The pain experience resists scientific study. It is a private and
intangible sensation (Sullivan, 1995). It is always difficult to elicit
a complete description of this private experience, and common
sensory impairments among older adults further complicate
assessment and confound the findings (Ferrell et al1994). An
example is the routine practice of asking for a rating of intensity
between 0 and 10 (“0 being no pain and 10 being the worst pain, how
do you rate your pain?”). Older adults frequently have more
difficulty than their younger counterparts in conceptualizing their
pain using a number, and they often find visual scales difficult to
read (Choiniere & Amsel, 1996). The use of pain rating scales
appeals to those who must document pain status, and their use is
suggested by current Agency for Health Care Policy and Research
[AHCPR] guidelines of clinical practice (USDHHS, 1992, 1994). Yet
clinicians find that patients have difficulty assigning a number to
their pain, and anecdotal reports suggest that older adults are
particularly inclined to have more problems using these pain scales

17
(Herr & Mobily, 1993). Currently, it is not known whether older
adults actually perceive their pain intensity differently, whether
they simply require alternative strategies to adequately assess
their pain intensity, or both.
Pain Language
Pain also resists language; words are inadequate to fully
communicate the experience (Sullivan, 1995). Health care
professionals have developed a “pain language” that is meaningful
among themselves, but this language is not always comprehensible
to others. Anecdotally, authors have noted that older adults
consistently use descriptors other than those offered by a clinician
(Herr & Mobily, 1991). One example is the reluctance to say the word
“pain”. Older adults commonly substitute other descriptors such as
“discomfort”, “aching”, and “soreness” (McCaffery & Beebe, 1989).
This language barrier thwarts effective communication, and
repeated attempts to quantify and objectify the pain frustrates and
disillusions those trying to communicate perceived pain.
Persons experiencing chronic nonmalignant pain are
particularly vulnerable to this frustration surrounding language
because their experience has never been adequately described as

18
perceived (Loeser, 1991; Sullivan, 1995). Expressive behaviors or
artistic expression have often been employed because language is
found to be totally inadequate (Janesick, 1994; Predeger, 1996). In
this study, participants were asked to describe their experience, but
the conversations remained open and unstructured so that the
language itself was not unnecessarily restrictive.
Assessing Perceived Pain
Assessing perceived chronic nonmalignant pain involves a
determination of current health status, severity of pain, independent
functionality, and mental status, but both process and interpretation
can be different among older adults (Herr & Mobily, 1991). Actual or
potential decreases in hearing, visual acuity, mobility, stamina, and
memory present special problems in assessment (Davies, 1996; Herr
& Mobily, 1991; Gagliese & Melzack, 1997). Atypical presentation
and adaptive behavior are classical gerontological characteristics
that continue to mislead health care providers (Gagliese & Melzack).
In addition, older persons’ reluctance to admit pain further distorts
communication with health care providers. Continued discounting of
the pain experience by both health care professionals and older
adults themselves blurs the distinction between health and illness

19
and hinders the generation of knowledge about what chronic
nonmalignant pain means to older adults.
The relationship of perceived pain to medical diagnosis,
general activity, depression, anxiety, and the perceived responses of
others is also recognized, but not well understood (Davis, 1992;
Melzack & Wall, 1988). Among older persons, the presence of chronic
nonmalignant pain most likely compounds their perceived physical,
emotional, and social vulnerability. Functional decline is less
readily compensated among those already experiencing compromised
health status, and the resulting loss of mobility and independence
accentuates feelings of depression and loneliness (Gagliese &
Melzack, 1997; Kelly & Raj, 1994). Fatigue and frustration further
limit ability to defend oneself against prevailing societal attitudes
that “old people” do not have appreciable pain, or that their chronic
discomforts should be tolerated as part of the aging process (Davies,
1996; Pasero & McCaffery, 1996). Older adults experiencing chronic
nonmalignant pain say that they are sick and tired of being sick and
tired (Donoghue & Siegel, 1992).
Current knowledge regarding treatment of chronic pain is often
replaced by intuition and guesswork when applied to an older

20
population (Hazzard, 1993). When researchers surveyed 10,000
Americans about the prevalence of non-steroidal anti-inflammatory
drug use among the general population for chronic pain (Taylor,
1985), only 207 of these respondents were over 65 years of age, and
none were over 85. Since older adults increasingly comprise a
significant portion of the general population, their responses to
specific pain management options need to be better represented.
Gerontologically sensitive information specifically addressing the
chronic nonmalignant pain experience among older adults is needed
to address any unique nuances inherently present within an older
population.
Impact Upon Quality of Life
Older adults suffer disproportionately from chronic painful
conditions, and this chronic pain represents a serious threat to
quality of life (Ferrell et al., 1994). Chronic pain from any origin has
been reported to impact multiple domains of physical, spiritual,
psychological, and social well-being (Ferrell, Rhiner, Cohen, & Grant,
1991; Roy, 1992), but much of the currently published literature
speculates on the generally negative outcomes accompanying
compromised functionality. Changes in lifestyle or life management,

21
intra- and interpersonal relationships, emotional stability, and
spirituality are all known to impact quality of life, but remain
underappreciated because they are more difficult to quantify. The
profoundly disruptive effects of chronic illness, perceived as
suffering, are noted in the literature but do not specifically address
the experience of chronic nonmalignant pain. A greater appreciation
of how chronic nonmalignant pain impacts older adults in needed.
Compromised Functionality
Studies addressing the quality of life among adults
experiencing chronic nonmalignant pain focused upon compromises in
functionality. One survey study (Hitchcock et al., 1994) described
changes in functionality among community dwelling adults who
reported chronic nonmalignant pain. This study included adults of all
ages, ages 19 to 90, yet the average age of 47 indicated that few
were older than 65 years. Ferrell and colleagues (Ferrell & Ferrell,
1990; Ferrell, Ferrell, & Osterweil, 1990; Ferrell et al., 1995)
included social and emotional indicators of quality of life when they
studied nursing home residents reporting chronic nonmalignant pain
symptoms, but still focused primarily upon compromises in
functionality. Little is known about quality of life among non-

22
institutionalized older adults who experience chronic nonmalignant
pain while living within a community setting.
The survey study by Hitchcock et al. (1994) included 204 adult
members of the National Chronic Pain Outreach Association and
measured their perceived quality of life. Participants listed their
“worst problems” in descending order: inability to work at a job or
do household chores, limitations on activities and hobbies, difficulty
in fulfilling one’s role as spouse, uncertainty about the future, lack
of pain control, life-style changes and decreased socializing,
decreased mobility, and difficulty sleeping. All 204 respondents
were members of a national self-help organization which suggests
that they had assumed some responsibility for managing their
chronic pain. Their collective demographic profile depicted stable
personalities, intact marriages, and average or better-than-average
education and financial resources. Yet participants reported a
significantly diminished quality of life, experienced pain 80% of the
time, and perceived medical interventions to be inadequate in
helping them live their lives.
No studies have specifically studied the impact of chronic
nonmalignant pain upon older adults, but three studies described

23
general pain complaints among nursing home residents. Ferrell et al.
(1990) interviewed 92 nursing home residents from three randomly
selected units representing different levels of care (board and care,
intermediate care, and skilled care). These alert and verbal
residents reported that pain primarily impaired ambulation (53%),
posture (49%), and sleep (45%). Pain also impaired their ability to
enjoy social activities (54%), such as group meals, visiting with
friends and relatives, and recreational activities.
Subsequently, Ferrell et al. (1995) interviewed 217 cognitively
impaired residents using a 33 item questionnaire along with several
other pain assessment instruments. Most were dependent in all
activities of daily living and demonstrated significant cognitive
impairment. Sixty-two percent of all respondents reported pain
complaints, primarily in the back (90%) and knees (78%). These
surveys did not differentiate types of pain, but described the pain in
ways that are usually associated with chronic nonmalignant pain.
Even when pain reports were unable to be elicited, Marzinski
(1991) found that the presence of pain could often be inferred from
behavioral cues. Marzinski’s (1991) study assessed pain among 26
cognitively impaired nursing home residents who had documented

24
histories of chronic painful conditions. She found that screaming,
moaning, pacing, and withdrawal behaviors such as curling into a
fetal position dramatically subsided upon initiation of pain
management. Data from all these studies indicated that chronic
nonmalignant pain was prevalent among older persons in many
settings, and compromises in quality of life were significant.
Lifestyle Changes
Pain management experience within the community is not
analogous to institutional settings because there is a stronger
emphasis on self care and greater inclusion of non pharmacological
strategies (Ferrell & Ferrell, 1991; Ferrell et al., 1994; Ferrell,
Grant, Rhiner, & Padilla, 1992). In the setting of chronic
nonmalignant pain, self-directed pain management strategies
typically impact individuals’ lifestyles, are frequently unknown by
health care professionals, and are often based upon socially learned
approaches involving traditional and non-traditional pain
management options (Roy, 1992). Sometimes these self-directed
strategies of pain management continue to be used even when they
are clearly detrimental. Because current economic trends favor
decreased hospital stays and increased utilization of community

25
health resources, life management while living with chronic pain
needs to be better understood and then selectively supported
(Ferrell & Ferrell, 1991; Ferrell & Schneider, 1988).
Since 1988, Ferrell and colleagues have actively studied the
home management of chronic pain associated with cancer. They have
explored current pain management strategies, assessment and
measurement issues, and varied interventional approaches (Ferrell &
Ferrell, 1991; Ferrell & Schneider, 1988; Ferrell et al., 1992). An
initial qualitative exploratory study describing pain management
both at home and within a hospital did not specifically target older
adults, but the average age of 58 (N=103) indicated that a
substantial number of these adults were indeed older (Ferrell &
Schneider). Narrative data obtained from their open ended survey
revealed that 83% of all respondents took medications less
frequently than ordered, 70% immobilized themselves to decrease
pain, and 60% described creative and unique non-pharmacological
methods including massage, imagery, praying, and physical activity
to decrease pain. While this study did not focus upon chronic
nonmalignant pain, the data strongly suggested that pain is managed
differently outside of institutional settings. Chronic nonmalignant

26
pain rarely necessitates inpatient treatment (Hanson & Gerber,
1990; Nossell, 1996; Watt-Watson & Donovan, 1992), and so it is
likely that many community based older adults are living with
chronic nonmalignant pain and continue managing themselves in
ways that compromise their quality of life.
Suffering and Enduring
When the experience of chronic nonmalignant constitutes
suffering, either focused within the immediate reality or viewed as
an overall perspective about one’s quality of life, some authors have
proposed that individuals learned to endure. Zalon (1997) studied
frail elderly women recovering from abdominal surgery, describing
the lived experience of these women during periods of acute
postoperative pain. She found that these older women described
endurance as their primary mechanism for getting through the pain,
and suggested that these study participants may have learned the
process of endurance because of their previous experiences with
chronic nonmalignant pain. Burke and Flaherty (1993) studied the
coping strategies of elderly arthritic women, and also reported that
their participants described enduring as a way of dealing with their
pain on a daily basis.

27
Among individuals describing their experiences with a variety
of illness experiences, Morse and Carter (1996) posited that
enduring was a process while suffering was the emotional response
to that which was endured. Using patient narratives of experience,
semi-structured interviews, and secondary data obtained from
interviews with patients’ relatives, they further identified that
some individuals were enduring to survive, others were enduring to
live, and some were enduring to die. These authors did not focus on
the experiences of older adults, but their findings are applicable to
an older population. By exploring the relationships between enduring
and suffering, Morse and Carter contributed to a greater
understanding of how individuals’ quality of life were impacted by
illness, and how they lived through the experience.
Theoretical Perspective
Recognizing the inherent subjectivity of pain, a major focus in
this study has been to explore the social contexts and conditions
that influence how older adults perceive their chronic nonmalignant
pain experience. The sociological theory of symbolic interactionism
is used because the meaning of pain is contextually situated
(Charmaz, 1983, 1990, 1991), symbolically interpreted (Donoghue &

28
Siegel, 1992) and fundamentally linked to one’s interaction within
the self and among others (Roy, 1992; Thorne, 1993). Interaction
within the self refers to the blending of personal past experience,
present status, and anticipated future as they create a very
contextual and subjective interpretation of pain. Interaction among
others refers to the dynamic action and consequences of action that
further contribute to meaning making activity and understanding of
reality. This symbolic interactionist paradigm focuses on everyday
life, on the meaning of events to people in natural or everyday
settings (Chenitz & Swanson, 1986). Symbolic interactionism is an
ideal framework for studying the experience of chronic nonmalignant
pain in older adults and how they relieve their pain.
Symbolic Interactionism
Symbolic interactionism rests upon three basic premises.
Blumer (1969) classically describes the first premise by explaining
that human beings act towards people and things on the basis of the
meanings that these people and things have for them. The meaning of
something is not to be taken for granted, because meaning is in fact
central in its own right (Blumer). His second premise is that
meaning arises out of the process of social interaction, and meaning

29
thus grows out of the ways that persons interact. His third premise
is that these meanings are handled in, and modified through, an
interpretive process used by the person in dealing with the things he
encounters. Thus, a human being is not a mere responding organism,
but an acting organism that formulates meaning and acts
accordingly. Responsiveness becomes not just a reflexive act but a
purposeful and meaning driven activity. This dynamic approach
captures the subjective perspectives created out of constant
interaction. The experience of chronic nonmalignant pain behavior
among older adults within their homes is thus approached using this
participant perspective, exploring the interactive and interpretive
processes. Context and patterns of interaction become the
conditions that affect how meaning is created within each
individual.
Charmaz (1983, 1990, 1991) has explored manifestations of
chronic illness among adults of all ages using symbolic
interactionism, and found that both self identity and relationships
with others are intimately linked with what is perceived and
interpreted. Her use of social constructionist theory and grounded
theory methodology reflects the symbolic interactionist perspective

30
as she paints a vivid picture of what it is like to experience chronic
illness. Since chronic illness often involves some dimension of pain,
this sensitivity to self and to relationships with others contributes
to the development of questions in this study so that more can be
learned about the social impact of chronic nonmalignant pain among
older adults.
Howell (1994) generated an explanatory theory for women with
chronic nonmalignant pain using grounded theory, an approach that
relies on the symbolic interactionist framework. She found that the
core variable affecting a chronic illness trajectory was “validation”
of the individual’s perceived pain experience. Millikin and Northcott
(1996) also found validation to be the core variable influencing
either a wellness or illness trajectory. Both studies included women
over sixty-five years of age. These studies are credible, and help to
explain how the interactional process of validating one’s
experiences influences progression toward perceived health or
illness. Findings from these studies underscore the interactional
influences on women who live with chronic nonmalignant pain,
because only women who felt that others believed their reports of
pain were able to progress towards wellness.

31
Multiple Interpretive Perspectives
Some studies describing the profound interactional influences
on the interpretation of pain experience incorporated multiple
interpretive perspectives. Cultural and socially-learned influences
are acknowledged to affect the meaning of pain (Bates, 1996), and
some studies emphasized the influence of cultural beliefs by
combining symbolic interactionism with ethnohistoricism
(Villarruel & Ortiz de Montellano, 1992) or sociocultural
interpretive theory (Bates, 1996). One study traced the socially
learned meanings attached to the interpretation of pain among
Mesoamericans (Villarruel & Ortiz de Montellano, 1992). Cultural
beliefs passed from generation to generation, and interacted with
present day experiences to shape participants’ interpretations of
pain. The Mesoamerican perspective of pain was found to be deply
rooted in both ancient and contemporary cultures, and culturally
sensitive nursing care required a basic understanding of both.
Other studies described multiple ethnic belief systems
involving Latin American and European cultures (Bates, 1996). Bates’
program of studies involved immigrant and second generation
Americans living in New England, focusing on the ethnic backgrounds

32
of those coming from Europe and Puerto Rico. Different cultural
belief systems shaped individuals’ reports of pain, symbolic
representations of what pain meant to them, expectations for
treatment (Bates, 1996). These studies were quantitative in design,
and did not specifically use a theoretical perspective of symbolic
interactionism. Bates used these studies to propose a culturally
sensitive model of pain assessment and treatment, but her model is
grounded by the basic tenents set forth in symbolic interactionism.
The symbolic interactionism approach, along with other
interpretive theoretical frameworks, assumes that interacting
persons perceive experiences in their own unique way. Knowledge
and truth do not rely upon objective realism, but become the product
of a subjectively interpreted perspective. Reality construction for
the symbolic interactionist becomes both process and outcome,
continually defining and redefining individuals’ interpretations of
the environment itself and of human interaction within it. Thus it is
assumed that interpersonal relationships significantly affect how
older adults interpret their pain experience. Symbolic
interactionism is an appropriate framework for discovering the
basic social psychological problem experienced by older adults who

33
live with chronic nonmalignant pain, and for uncovering the basic
social psychological processes that are used as older adults work to
ameliorate the problem.
Summary
An investigation of the subjective perspective is needed to
fully explore how older adults think about and live with chronic
nonmalignant pain when living primarily within non-institutional
environments. The perceived chronic nonmalignant pain experience
among older adults has been inadequately described. A decreased
quality of life has only been inferred from the perceived meaning. No
studies have specifically explored the phenomenon of chronic
nonmalignant pain among older adults. Since current economic trends
encourage community-based health care, a substantive theory needs
to be generated to explain the private and social dimensions of
chronic nonmalignant pain that include those older adults living
within community settings. Contextual conditions which influence
perceived benefits or disadvantages accompanying self management
need to be uncovered. Using a symbolic interactionist framework,
this study will focus on the subjective perspective, exploring
information that is “grounded” in the sense that participants’ own

34
words provide the foundation for building a more conceptual
explanatory theory. Grounded theory provides a set of useful
strategies to explore how older adults live with chronic
nonmalignant pain, how they interpret their painful experiences, and
how interactions with others mediate their experience. Generation
of a substantive theory concerning chronic nonmalignant pain among
older adults can advance the challenge of appropriate community-
based pain management among this population.

CHAPTER THREE
METHOD
An inductive approach using grounded theory methodology was
chosen so that knowledge of community dwelling older adults’
experiences with chronic nonmalignant pain could be gained. The
direction of analysis built upward from an individual level,
constantly comparing empirical and substantive data so that a
substantive theory could be generated about a larger population
(Strauss & Corbin, 1994). In this study, data from older adults
experiencing chronic nonmalignant pain was used to generate a
substantive theory that could explain the experience among all older
adults who lived with chronic nonmalignant pain. The research
participants themselves were considered experts: their responses
guided and informed me, the researcher, about their experiences
living with chronic nonmalignant pain.
Grounded theory is a systematic approach for the collection
and analysis of qualitative data, and it is undergirded by the
symbolic interactionism perspective (Chenitz & Swanson, 1986). For
35

36
symbolic interactionists, perception is influenced through social
interaction, and the construed meaning of people, things, and events
guides behavior (Chenitz & Swanson, 1986). Patterns of daily living
are interpreted and re-enacted on the basis of this meaning making
activity.
Grounded theorists assume that people who share similar
experiences also share a basic social psychological problem, a core
variable that is generally unarticulated but always present (Glaser,
1992). Within a social context, this problem is also assumed to
always affect individual behavior and their social interactions.
Individuals develop social psychological processes to negotiate the
problem, and these processes are utilized under specific conditions
and lead to specific consequences. It is these problems and
processes that are explored among older adults experiencing chronic
nonmalignant pain.
Sample and Setting
Non-institutionalized older adults who reported living with
chronic nonmalignant pain were sought primarily among an urban
community in the southeastern United States. One ninety-two year
old gentleman requested that he be included even though he had

37
recently moved to an assisted living facility. I had planned to
exclude adults who were less than sixty-five years of age, but a few
participants asked to be included even though they were only sixty-
three years of age. Potential participants were asked if they had
experienced chronic pain that was not cancer related, and if they
would be willing to describe their experience. Interested older
adults who responded positively and possessed sufficient physical
and mental abilities to participate in an interview lasting
approximately one hour were included. Potential participants were
excluded if they were unable to speak or hear, or possessed
significant mental and/or neurological deficits that would impair
conversation with the researcher.
Sample Selection
Initially, a written notice describing the study and asking for
potential participants was distributed to nurses who practice in
primarily community based settings (see Appendix A). Similar
written information was also distributed to the facilitators of local
support groups affiliated with chronic nonmalignant conditions such
as arthritis. Nurses and support group facilitators were asked to
identify older adults who met the inclusion and exclusion criteria

38
and then either (a) distribute the information so that the older adult
could contact the investigator, or (b) request permission from the
older adult for the investigator to make initial contact. Several
local parish nurses and a few home health nurses expressed
willingness to refer older adults to this study. As the study
progressed, I found that contacting community nurses and support
group facilitators by telephone yielded few referrals. Study
participants themselves became the primary referrals for enrolling
additional older adults experiencing chronic nonmalignant pain.
I nterviews
Interviews generally took place in the participant’s home.
Anticipating that some participants might be reluctant to invite a
researcher into their home, other possible locations that could
provide a quiet and private atmosphere were suggested, but few
participants chose to leave their homes. Three interviews were
conducted by using a telephone, these interviews took place after
signed written consent forms were mailed back to the researcher.
Face-to-face interviews were preferable from the researcher’s
perspective, and so interviewing by telephone was generally
discouraged. Interviews generally took approximately one hour, and

39
participants were informed that they could stop the interview if
they became uncomfortable or fatigued. Actual length of time spent
with each participant usually exceeded one hour because of their
desire for social interaction. Social time was loosely controlled and
not overtly discouraged because of the desire for each participant to
feel comfortable and relaxed enough to talk freely.
Sample Description
The sample included fourteen men and eleven women, ranging
in age from 63 to 93 years of age, with an average age of seventy-
three. All participants met inclusion criteria and resided within the
community. Two participants lived in retirement communities and
one had recently moved to an assisted living environment because of
worsening problems with mobility and self care. All other
participants lived in their homes, either alone or with at least one
other family member.
As the study progressed, sample selection and size were
guided by purposive and relevant selection of individuals whose
unique characteristics contributed to the substantive problem under
study (Strauss, 1987). Diversity in type of chronic nonmalignant pain
reported, overall health status, and socioeconomic status was

40
sought. All but one participant was Caucasian, and so a range of
ethnically diverse individuals was not captured in this study. Since
the aim of this study was to generate theory, representative data
were sought that accounted for as much variation as possible
(Glaser, 1992).
Adequacy of the Sample
Adequacy of the sample ultimately affects the reliability and
credibility of the study (Chenitz & Swanson, 1986), and so
theoretical sampling was used to guide data collection. Theoretical
sampling refers to the collection of data that are relevant to the
emerging categories. Initially, current knowledge on chronic
nonmalignant pain suggested that the sample should include
individuals with diverse health status, functionality, and
socioeconomic status. Interview questions were designed to elicit
information about how pain was experienced and how participants
adapted to the changes in their lives brought on by chronic
nonmalignant pain. As the study progressed, emerging theory about
participants’ awareness and sensitivity to time drove further
sampling until interview data no longer yielded new information and
categories were fully developed (Strauss, 1987). Interview

41
questions began to focus more on participants’ changing
perspectives about time, and their concerns about how time passed.
Participant interviews ultimately yielded no new theoretical
information about painful aging, dimensions and properties of the
phenomena were adequately explained. Theoretical saturation was
reached, and sampling was completed.
Procedure for Protection of Human Subjects
There was minimal risk to human subjects in this study. This
study involved only conversation with the researcher about chronic
pain experiences among older adults. The interviews focused
primarily on how older adults perceived their chronic nonmalignant
pain and its impact upon daily living. Written informed consent was
obtained (see Appendix B), with one copy kept by me and one copy
given to each participant. Enlarged print and simplified language
were used in the consent form to enhance readability, and several
participants remarked positively about how easy it was to read. As
each interview began, this written consent was followed by verbal
consent to confirm willingness to participate. Information discussed
while obtaining verbal consent included (a) re-statement of the
general purpose of the study, (b) the voluntary nature of

42
participation, (c) confidentiality of data, and (d) anonymity of
participants.
Potential Risks
Potential risks to participants included fatigue, and possibly
some distress or exacerbation of their pain as their thoughts
focused on the pain. Potential fatigue was minimized by initially
limiting the interview time to approximately one hour, yet most
participants requested more time “to say all that has to be said”. No
one verbalized any increase in their pain, and several reported that
they “felt better” after the interview, appreciating a chance to talk
openly about their pain.
Potential Benefits
Potential benefits to participants included the opportunity to
freely discuss their chronic pain experience, how it impacts their
lives and how they manage their pain. Opportunities to discuss their
pain with an interested adult who was not a relative or primary
healthcare provider allowed many respondents to gain further
insight regarding their thoughts on painful aging. Similar benefits
have been documented by Hutchinson, Wilson and Wilson (1994).
Societal benefit included the opportunities to better understand the

43
uniqueness of chronic nonmalignant pain among older adults, the
conditions affecting their treatment efforts, and strategies felt to
be most useful. Such awareness can serve as a basis for designing
appropriate and relevant nursing interventions for this population.
Data Collection
Data were primarily collected through semi-structured
interviews (see Appendix C). Interviews were designed to be relaxed
in style, providing a non threatening environment that was conducive
to the sharing of participants’ thoughts and feelings. Guided by
general inquiry and then a few probing questions, the interviews
sought to elicit fundamental information about the dimensions and
properties of chronic nonmalignant pain experienced by older adults.
Phases, strategies, conditions, and consequences of the perceived
experience were the primary focus (Hutchinson, 1986). As theory
generation progressed, more emphasis was placed upon eliciting
information relative to participants’ changing time perspectives.
Pain history information was gathered from a short
questionnaire designed to describe and categorize pain reports (see
Appendix D). This questionnaire was completed by each participant
with guidance from the researcher. A quantifiable pain history was

44
recorded by asking participants to rate the intensity of pain
currently being experienced and the intensity range of pain usually
being experienced using a verbally described numerical rating scale.
Descriptions about specific physical locations of pain such as back,
neck, or feet were also sought. Data obtained from these
questionnaires were sought so that findings could be interpreted
within the context of similar descriptive data currently being
reported in the pain literature. Similar descriptive data have been
requested in order to facilitate comparisons among studies (B.
Ferrell, personal communication, April 26, 1996), and these
comparisons will add further to the limited body of knowledge about
chronic nonmalignant pain among older adults.
In this study, the data were also used to describe the sample.
The twenty-five older adults who recounted their experiences with
chronic nonmalignant pain indicated an average pain intensity score
of “3” while being interviewed. Their “worst” pain intensity
averaged a rating of “8” and their “least” pain intensity averaged a
rating of “2”. Using “0” as no pain and “10” as the “worst possible”
pain, their self reports indicated a typical pattern of sustained
chronic pain with wide fluctuations in intensity. Participants

45
averaged four separate painful locations that persistently bothered
them, and reported significant alterations in sleep, activity,
socialization, and emotional stability because of their pain. This
descriptive information helps others understand how chronic
nonmalignant pain impacts daily living, and essentially supports
participants’ own conclusions about the problematic nature of their
current reality.
Most participants completed a singular interview, however
four participants consented to additional shorter interviews when I
requested clarification or validation of the data. Participation in
this study was not be contingent upon future availability, yet all
participants expressed willingness for future contact. Credibility of
subsequent data analysis was enhanced because of participants’
willingness to expand upon concepts and ideas that I extracted from
initial interviews.
Data Recording
Interviews were negotiated with each participant.
Immediately prior to each interview, a portable audio tape recorder
was placed between the participant and me. I asked participants
questions from the interview guide (see Appendix C), and was then

46
guided by their responses in eliciting further data. Interviewer
conversation was intentionally brief, but participant elaboration
was encouraged because detailed descriptions provided information
about the problem under study.
Audio taped recordings were transcribed verbatim so that no
data were lost, and then stored in a locked drawer to assure
participant confidentiality. Upon completion of this study, these
audio recordings will be erased. Each transcript was coded to assure
anonymity. Typed transcripts, memos, and codes were stored on
computer diskettes, and locked in my office. Within the computer
itself, access to any typed information is limited via password
protection.
Data Analysis
Using grounded theory, the fundamental method of data
analysis involved the constant comparative method, first proposed
by Glaser and Strauss (1967). Each phrase, each line, and often each
word of transcribed text was coded, and codes were constantly
compared.

47
First and Second Level Coding
First level coding involved efforts to briefly summarize what
has been said, the credibility of this study ultimately resting upon
the accuracy of these codes (Janesick, 1994; Strauss, 1987). Coding
was “open”, meaning that no pre-existing categorization was
allowed to influence the coding process (Glaser, 1978). First level
coding was solely focused upon describing what participants were
saying. Properties and dimensions emerged as codes were compared,
often involving temporal questions about frequency, duration, and
timing.
Second level coding involved conceptualizing the data by
comparing incident with incident, and incident with concept (Glaser,
1992). While first level codes tended to break the data into pieces,
second level codes then elevated the data into more abstract
concepts (Hutchinson, 1986). Second level codes were also “open”,
meaning that I as a researcher was not constrained by existing
theory and could concentrate on conceptually elevating the first
level codes into more conceptually complete ideas that still
reflected participant data.

48
Selective Coding
Concepts were then categorized and linked, and constructs
developed. As emerging categories were compared with each other,
as well as other substantive codes, core variables reflecting a basic
social psychological problem and process were identified. Once the
basic social psychological problem and process were identified, open
coding ceased and selective coding began. In selective coding, the
researcher limits coding to a few codes that appear particularly
relevant to the data. In this study, selective coding drove further
data collection and sample selection (Glaser, 1978). The resulting
conceptual analysis retained credibility because it was grounded in
the data (Guba & Lincoln, 1982).
Causal or intervening conditions and consequences were also
reviewed (Glaser & Strauss, 1967). Consequences were actual or
potential, and some became a condition for further action or
inaction. For example, I frequently asked participants what
conditions prompted what activity or strategy, what were the
consequences, and were these consequences anticipated. Sometimes
the answers were within the data, but sometimes I needed to
continue interviewing until the phenomenon was fully explained.

49
Constant Comparison
Systematic comparisons of two or more concepts were used to
explore relational linkages, and theoretical sensitivity allowed the
development of broad categories and subcategories (Glaser, 1992).
At times, emergent designs and understandings were compared with
existing theory. The contextually situated and experientially
grounded data may be related to existing paradigms, in which case I
explored relevant linkages. Each perception in each category was
then compared with other perceptions, asking what category would
include similar perceptions. Finally, the emerging categories were
compared with each other to ensure mutual exclusivity and inclusion
of all the perceptual variations.
Eventually, core categories emerged that could illuminate the
basic social psychological problem going on among participating
elders. Completeness and explanatory power indicated saturation of
the categories (Glaser, 1992). As core categories emerged, they
formed the basis of a theoretical construct. These theoretical
constructs were abstract but were also clearly grounded in the
substantive data. Guided by Glaser and Strauss (1967), theoretical
constructs and core variables were then linked to form a substantive

50
theory. Use of the constant comparative process strengthened
credibility of the theory because of its implicit groundedness. A
comprehensive, integrated, yet parsimonious theory was sought to
best capture the essence of what differentiates older adults
experiencing chronic nonmalignant pain from others.
Maintaining Rigor
In qualitative research, the researcher is considered a primary
research instrument (Hutchinson, 1986; Rew, Bechtel & Sapp, 1993;
Streubert & Carpenter, 1995). A researcher’s past experience with
the area being studies can be perceived as a source of bias or as
bringing richness to the research endeavor (Chenitz & Swanson,
1986). I have no personal knowledge concerning the experience of
chronic nonmalignant pain, nor do I have personal knowledge about
what it is like to be an older adult over sixty-five years of age. I
approached this research study as a novice, being relatively
uninformed about how chronic nonmalignant pain influenced the lives
of older adults. My unbiased approach allowed me to question and
probe participant responses more deeply than I might otherwise have
done, and my lack of empirical knowledge contributed to greater
receptivity of participants’ descriptions. Study participants

51
frequently complained that others’ trivialized complaints related to
pain or aging, and so my own naiveté proved valuable because I did
not presume to know what they were experiencing. When asked,
participants were always willing to expand my understanding by
giving examples.
Credibility Of The Data
The trustworthiness of grounded theory findings is necessary
to assure that the conceptual analysis of data faithfully illuminates
the basic social psychological problem perceived by participating
individuals, and captures a true description of how they dealt with
the problem. Perceptions of human experiences are unique, dynamic,
and contextualized and therefore necessarily difficult to validate
using empirical methodology (Hall & Stevens, 1991). Credibility of a
grounded theory, the parallel to validity in quantitative studies, can
be established by retrospectively reviewing recorded data and
prospectively verifying information with additional participants
(Hall & Stevens; Glaser, 1978). When participant data have been
accurately and carefully recorded, and interpretations remain
faithful to participants’ understanding of their experiences, then
subsequent analysis of participant data remains believable and

52
credible. Continuously checking with participants throughout the
duration of the study reassured me, as researcher, that my
interpretations of the data were trustworthy and accurate. When
analysis was largely completed, I approached four additional older
adults experiencing chronic nonmalignant pain. Their confirmation of
my findings and analysis provided further verification and
credibility.
Consistency Of The Data
Consistency is the qualitative characteristic most closely
related to quantitative reliability. By its very nature, qualitative
research can not be replicated. The same interviews, the same data,
and the same interactions will never reoccur because of the dynamic
interactive qualities of participants and life events. However, it is
necessary for the researcher to demonstrate the analytic process to
an outside observer (Hall & Stevens, 1991). The “auditability” in
this study has been achieved by clearly written descriptions of the
analytic process, retention of transcribed data and written analytic
memos, and researcher adherence to the methodological techniques
set forth by experts in studies using grounded theory. Memos written
by myself and by my supervisory chair relative to the interpretive

53
analysis of the data have also been preserved. Evolution of raw data
into conceptually related categories can be traced via dated memos
and chapter drafts, and is subtly present through the use of constant
comparison of concepts and categories.
Fittingness Of The Data
Study findings should be meaningful and applicable to both
participants and others with contextually similar experiences. Study
findings should fit the data from which they are derived, and
conceptual analysis generated from the data should accurately
relate to the description. During actual data collection, I frequently
asked participants if they agreed with statements made by a
previous participant. Often they did, and they usually elaborated
further by recounting their own personal experiences. Sometimes
they did not agree with my interpretation, and would then articulate
the differences so that I could better understand what had been said
or what was being said.
Summary
This chapter has outlined the method that was used for this
study on chronic nonmalignant pain among older adults. Grounded
theory, undergirded by symbolic interactionism, was chosen to best

54
learn about older adults’ experience with chronic nonmalignant pain.
Sampling considerations, data collection, data recording, and data
analysis were described. The various components of scientific rigor
were reviewed, including credibility, consistency, and fittingness of
the data. The following chapters focus on the analytic review of
participant data, out of which a substantive theory on chronic
nonmalignant pain among older adults was generated.

CHAPTER FOUR
PAINFUL AGING: THE BASIC SOCIAL PSYCHOLOGICAL PROBLEM
Introduction
An essential component of grounded theory is the
identification of a basic social psychological problem (BSP) that is
common to, yet unarticulated by, the group involved (Glaser, 1992).
Grounded theorists seek to explain and understand how individuals
define their reality, and presume that a BSP is central to that
reality. The participants in this study shared the common
circumstance of being older (at least 63 years) and experiencing
chronic nonmalignant pain. Duration of their pain ranged from four
months to over two decades. As a group, these participants found
living with chronic nonmalignant pain difficult, and believed their
age aggravated both the pain itself and its effects. Participants
reported that they expected more pain because they were older, and
believed their pain occurred more frequently than among younger
counterparts. Participants believed that the “deadly combination” of
chronic nonmalignant pain and aging produced a synergistic effect
that exaggerated their suffering, compromised their health and
55

56
redefined their lives. They developed explanatory models to better
understand their painful aging, and shared their perceived
consequences related to painful aging. Data revealed that it was the
combination of pain and aging that centrally defined the
participants’ reality, therefore I conceptualize the basic social
psychological problem as painful aging.
Painful Aging
Older adults participating in this study all lived with chronic
nonmalignant pain, and they consistently referred to their painful
discomfort as “getting old”. Their pain was a “not so gentle
reminder” of advancing age, a symbolic representation of growing
vulnerability that was then associated with old age. As one
participant summarized, “when you don’t feel good physically, you
begin to wonder why, and when you are seventy-one, the first thing
that naturally comes to mind is that you must be getting old.” This
linkage of pain and aging is a familiar concept, because even young
people report “feeling old” when not feeling good. Yet presuming
that pain and aging always coexist is inaccurate. It is because these
participants were indeed older that their remarks essentially
validated and perpetuated this common association.

57
The enduring presence of chronic nonmalignant pain heightened
participants’ awareness of their own advancing age. Chapman &
Syrjala (1996) theorize that pain is a dual phenomenon, proposing
that the perception of painful sensation is then followed by an
emotional reaction. This was the case among these older adults.
Uncomfortable sensations related to chronic nonmalignant pain
precipitated the common reaction of feeling old. Some participants
believed their pain was “ordinary”, common, and a necessary
accompaniment to aging. Others believed their pain was
extraordinary and unique, an unfortunate development further
aggravated by aging. In either case, the experienced phenomenon of
pain merged with their knowledge of personal age, and collapsed into
a basic social psychological problem of painful aging.
Participants’ basic descriptions of chronic nonmalignant pain
itself were not age related, because pain specific variables such as
location, intensity, quality and duration closely resembled pain
descriptions among individuals of any age. Essential differences
came from believing that their pain and the circumstances
surrounding their pain was disproportionately aggravated by
advancing age. The cumulative effect of multiple pain locations led

58
older adults to believe that they had greater pain than when they
were younger. As additional painful locations were identified,
participants sensed that their pain was “growing” over time.
Participants believed their older age contributed to an increase in
pain, but it also contributed to lessening stamina and reserve.
Participants had less confidence in their own abilities of
recuperation. For them, it felt as if they were fighting a losing
battle. As one individual summarized, the chronic pain makes me
“older and sicker”.
Expecting Painful Aging.
Participants all reported hearing comments from their
physicians, families, and peers which led them to expect that pain
goes along with getting older. Frequent conversations with others
validated a common socially constructed association between pain
and aging. They also believed themselves similar to their
contemporaries because friends and relatives reported comparable
experiences. Dismissal of the pain was routine, accompanied by
questions such as “what do you expect at your age?” Repeatedly
hearing these kinds of remarks led participants to believe that
painful aging was inevitable.

59
Expecting painful aging led to increased tolerance. Popular lay
publications (Cousins, 1979; Siegel, 1986) and some research based
studies have suggested that individuals live according to their
expectations (Barsevick & Lauver, 1997). Participants in this study
frequently mentioned their expectations of painful aging as they
spoke of their own experiences. Reviewing his experience with pain
and aging, one man explained “I never used to have pain ... but it
comes with the territory as you get older”. Others echoed this
sentiment.
You’ve got to expect a certain amount of this when you get
older. With the arthritis and all, I mean, we all slow down
some, kind of fall apart, and get stiffer and creakier...l expect
that, and I can deal with it.
The expectation of painful aging blurred distinctions between
normal and abnormal for these study participants. It was a state of
being, becoming as one ninety-two year old man said, “one of those
things, like being hungry or being tired”. Still, at least one woman
was able to articulate that there were limits to what she could
tolerate.
Arthritis is what I expect. This other stuff I don’t expect.
Arthritis is like, well, being stiff in the morning, but you
can work it out. Arthritis is like achy, or sore. But this other,
it’s not arthritis, it’s pain, and I don’t expect that at all, and
I shouldn’t have to put up with it. But that’s the way it is I

60
guess. But I don’t think it’s normal, and I don’t think it should
be part of the package of getting older.
When painful aging became intolerable, participants struggled to
find relief. Going to bed, relaxing, resting, and reclining were
immediate choices. Once the painful flare subsided, they resumed
their daily routine. Each had personally defined limits of pain
endurance, but unrelenting discomfort was still an expectation of
daily living.
Perceiving More Pain
One seventy-year old man suggested that chronic nonmalignant
pain was more problematic among older adults because there was
“more of it”. He was referring to the additive effect produced by
several coexisting “pain spots” rather than any singular source of
discomfort. “Pain is pain. You just get more of it when you are
older.” Study findings supported his statement. Participants
reported an average of at least four different painful areas, and
rated their current pain between three and eight when using “0” to
reflect no pain and “10” to reflect the worst pain intensity. The
accumulation of multiple pains led participants to associate
increasing pain with increasing age. They believed that their pain

61
was “growing” over time, and a continued inability to find relief led
them to expect that their pain would “never end”.
In addition to multiple pain locations, participants reported
that the steady persistence of their pain, its “infinite staying
power”, was troublesome. As one woman explained, her pain “hasn’t
been on and off, it’s been on. It’s just always there.” According to
another, the pain “just kind of sets in”. Ongoing pain was a continual
intrusion, robbing each individual of his or her current and future
wellness. As one participant concluded, the pain “never gets any
better. I mean, I don’t see it getting better in my future any more...it
gets a hold of you, and then it stays on.”
For some, chronic nonmalignant pain was more sporadic than it
was consistent, and so the persistence of pain was revealed in its
continual recurrence. For them, the pain was like “a cat you throw
out to the barn and hope it will stay away, but no, it always comes
back”. Everyone hoped their pain would go away forever, but no one
ever thought that would happen. Even during episodes of relative
comfort, participants knew that their pain would “always come
back”. Unrelenting pain with no anticipated relief, “no chance for

62
parole”, was depressing and discouraging. Participants developed
explanatory models to better understand what was happening.
Explanatory Models of Chronic Nonmalianant Pain and Aging
Discomfort due to chronic nonmalignant pain did not conform
to past experiences with acute pain. Some were exhausted by the
constant “aching” and “creaking” of painful joints, others were
tormented by the repetitiveness of intermittently recurring
“attacks”. Pain’s alien presence set them apart from others.
Participants developed logical explanations about why their pain
existed and persisted to help them understand their experience.
Some attributed their pain to overall physical decline, some
ascribed their pain to an unusual structural reconfiguration brought
on by disease or injury, and others interpreted their pain as
symptomatic of chronic illness. Participants’ own interactional and
personal experiences informed their understanding of pain, and
references to their older age always accompanied their explanations.
Physical Decline
Most older adults participating in this study attributed the
persistence of chronic nonmalignant pain to ongoing physical
decline. Participants described themselves as “physically falling

63
apart”. They also described how their physical status worsened over
time “like the powerful ocean waters that wear down rock”, and led
to bodily “disintegration” and “decay”. Participants believed this
deterioration was a general consequence of aging, it was natural and
inevitable. Inventorying his body, one man reported “I think you just
start falling apart, little by little. Your back, your teeth, your eyes.
It all goes.”
Pain descriptions among these older adults primarily reflected
an understanding of degenerative changes within their spine and
their joints. Chronic back pain was an almost universal complaint,
and participants strongly associated their pain with aging. Their
crumbling vertebrae most closely resembled a disintegrating
process, “wearing down” over time. One man described the anatomy
of his backbone by saying “there’s bone on bone there ... there’s just
nothing left ... all the vertebras are just all broken down and all. Just
decaying ... I can tell, because I shrunk so.”
Knee pain and neck pain were also common, attributed to
arthritis or traumatic injury, but always believed to be aggravated
by advancing age. Nagging and lingering pains were annoying, and led
to frustration, “misery”, and overwhelming fatigue. Some

64
individuals described several painful locations, reporting variations
on a main complaint or mysterious combinations of fleeting pain.
One man called his pains “ambulatory”, because they traveled to
different areas within his body. Since most participants had not
experienced any discomfort when they were younger, they believed
that aging directly contributed to their pain because the movable
connections between bones wore down with time and continued
usage. Those who had experienced pain during their younger years
related worsening pain as they grew older. Discomforting sensations
might “set in” for awhile, others would “come and go”, leaving
participants at a loss to explain how or why. They only knew they
were “wearing down” and “wearing out”.
Study participants believed that the process of physically
falling apart could not be arrested or reversed. Paralleling their
perceptions of physical decline were alarming compromises in self
image. One participant was able to articulate this perception when
he said “one time, when I stood up ... it felt as though my hip might
disintegrate. And when I felt that, it was like I might disintegrate
along with it.” Physically falling apart was threatening, because a
trajectory of physical decline compromised independence and

65
functionality. Participants believed this downward decline would
progress over time, accentuating poor health and accelerating death.
Structural Reconfiguration
Several study participants believed that disease or disability
had irreversibly transformed and reconfigured their bodies and their
lives. They focused upon specific structural deviations within their
bodies rather than a general nonspecific deterioration. The pain
arising from nervous tissue damage, neuropathic pain, was a common
example. Neuropathic pain was described as exquisitely
excruciating, with “shooting” and “stabbing” qualities that
overwhelmed to the point of “sheer anguish”. The lancinating pain
accompanying sciatica, amputated extremities, and herpetic attacks
were common examples.
A lot of times I have this horrific pain that shoots through
me like a lightening bolt. It’s like a red hot wire that enters
up here at the top of my neck, then it goes down my back to
about the base of the scapula, then in separates so that it
turns into two wires that go around here on both sides ...
and when you have these kinds of pains that don’t go away,
then you’re the one that gets to know them best ... you have
to live with it and you can’t run away.
One individual ascribed the fiery pain arising from his damaged
nerves to “faulty wiring”. He was essentially describing how his

66
nerve pathways had been reconfigured, metaphorically comparing his
nervous system pathways to electrical wiring.
These descriptions of neuropathic pain readily conformed to
classic pain syndromes known to and described by their doctors, but
participants were mystified. Participants considered these
intensely painful sensations abnormal, and transferred that sense of
abnormality to include their entire body. As one participant stated,
“I know I’m different. Normal people don’t have anything like
this...my whole system is a little off.” No one expected resolution of
their pain because they believed their bodies were irreversibly
damaged. Because painful attacks recurred intermittently,
participants projected an undulating trajectory of continued pain.
Disease Progression
A few study participants interpreted chronic nonmalignant
painful symptommatology as a function of previously diagnosed
chronic disease. Their conditions included cardiovascular disease,
hepatic insufficiency, Parkinson’s disease, and peripheral vascular
disease. Similar to those who attribute their cancer related pain to
a growing malignancy, these participants believed that increased
pain signaled disease progression and worsening health. Common

67
examples included chronic anginal “pressure”, deep visceral
fullness, “paralyzing” headaches, and cramping ischemic pain. All
were painful sequelae arising out of known illness, and participants
“knew” that the frequency and severity of their pain would only
increase as their illness progressed over time. They projected dual
trajectories of escalating pain and disease that would continue until
death.
Participants’ interpretations regarding their chronic pain did
not always match those of their physicians and nurses. Once
attributed to disease, participants continued the interpretation
because the pain “felt the same”. Physicians and nurses, however,
would disagree in the absence of other confirmatory findings.
Chronic angina was a typical example.
Chest pains ... they come on a lot, and they used to scare me. I
guess they still do, but not as much. I’ve had two heart
attacks, and it always feels the same, even when it turns out
not be a heart attack. Always feels the same, funny how that
is. So see, I can’t tell the difference. But I been to the
emergency room a lot when they just sent me home, and so now
I kind of wait it out, you know. Then if it doesn’t go away after
awhile, then I’ll call ... I never know if it’s going to be the real
thing or not ... Doctor told me that it’s not really my heart, but
I think he’s just saying that. I mean, I’ve had two heart
attacks, so for sure there is a problem.

68
This lady was convinced that her pain came from a “bad heart”, yet
she learned to “wait it out” because electrocardiographic tests and
laboratory results did not always confirm her intuition. Another
participant related a similar experience, saying that he endured
daily occurrences of “tightening” and “pressure”, and took
sublingual nitroglycerin so frequently that it was “like eating
candy”. Even though his doctor told him the pain was not cardiac
related, he predicted a worsening heart condition that would kill him
one day when “the big one” came, meaning a fatal heart attack.
Participants with chronic angina, and others with similar disease
related pain, trusted their own intuition over professional opinion. It
was among these participants that the deadly combination of pain
and aging was the most threatening to their lives.
Painful Aging as a Deadly Combination
The interaction of pain and aging produced a synergistic effect.
Pain intensified the effects of aging, and aging exacerbated the
effects of pain. All too often, the “bad combination of things going
wrong” seemed to worsen the pain as well as aggravate perceptions
of getting older. Participants found that pain coupled with advancing
age made them “feel old”, assaulting their physical bodies and their

69
mental constructions of self identity. They didn’t mind “being old”
as much as they minded “feeling old”. One woman referred to a
recent newspaper article when trying to explain the difference. “I
saw this picture of a shirt in the paper this morning, I’d like to have
that T-shirt, It says exactly what I think about getting old. It says
something about ‘I don’t mind being older. I just don't want to be
old.’ That’s me.” Other participants agreed. One man asserted that he
would be “twenty years younger if it weren’t for this knee”. For him,
his pain was defining his age. An eighty year old man elaborated
further. “Knowing myself as intimately as I do ... these pains assault
my different body parts ... and the combined effects of age and pain
[become] a deadly combination ... it slows me down, and ultimately
dictates my life.”
For these older adults, both chronic pain and aging were
deviant conditions that seemed to worsen over time. Chronic pain
was believed to be common among older adults, even expected, but
not really normal. Aging was also an expected, natural phenomenon,
but not really normative because participants didn’t really identify
with an aging exterior body. Participants believed they were
essentially the same as they had always been, the “inner essence

70
that resides deep inside” was more representative of their true
selves than any mirrored reflection. Convergence of the two deviant
phenomena, pain and aging, became a “deadly combination” that was
significantly problematic for these participants.
The Relationship of Pain and Aging
The question sometimes arose as to whether aging
precipitated pain or vice versa. Participants were unsure, and
thought this was like asking if the chicken or the egg came first. For
them, pain made you feel older, and being older made the pain worse.
Each aggravated the other. Upon reflection, some decided that the
natural process of aging affected the physical body in ways that
then set the stage for chronic pain. In describing a perceived
relationship of pain to aging, one participant noted that he had not
experienced chronic nonmalignant pain until after the fifth decade of
his life. Nor had he encountered any serious illnesses. For him, he
believed that “structure precedes function. What you’re looking at in
the body are the effects of aging, not aging itself. And the aging is
what leads to the body break down. Then comes the pain. Or at least
that’s how it is for me.” Since being older seemed to preceed both
his pain and his decline in health, this interpretation best explained

71
his own experience. Many agreed, one individual noting “I wouldn’t be
like this except that I’m getting on [in years]”.
When participants related years and even decades of chronic
nonmalignant pain, they tended to reverse the relationship. These
individuals described how pain limited their lifestyle which then
forced them to “gear my existence to how I feel”. For them, it was
the pain that made them feel older, and longevity was only
prolonging the duration of their pain. “When you can not move
without pain, it affects your ability to grasp and deal with those
things that might occur in day-to-day circumstances ... it makes you
older.” Ultimately it did not matter which came first. Participants
focused on the sum total of their experience, and few tried to
differentiate between the separate components of pain and aging.
Consequences of Painful Aging
Participants readily agreed that painful aging significantly
impacted their lives. Pain itself contributed to fatigue, and
compromised functionality. Participants described themselves as
being worn out, and believed they were less resilient because of the
combined effects of pain and aging. One lady tried to explain the
interactive effects of pain and aging.

72
[The pain is] worse and all because I’m older and I have a
heart condition, and of course the arthritis and such. So it’s
worse that way, because one thing just kind of aggravates
another. But it’s not brought on by age. I mean, I know that I
am the same age now as I was this morning, and yet this
morning it was really hurting for awhile, and I kind of felt
older I guess.
Participants noticed tendencies to decrease their activities in order
to limit pain and fatigue, and they believed that they were
increasingly vulnerable to further disease and injury. Efforts to
modify and adapt their lives to multiple health concerns required
flexibility, and led to their juggling of different priorities.
Participants anticipated continuation of pain and a potential
worsening of their health that was complicated by advancing age.
Without exception, each participant in this study described specific
situations of how pain and aging compromised their health, their
functionality, and their overall quality of living.
Wearing You Down
Study participants reported that chronic pain and aging were
both chronic sources of stress that were always “wearing you down”
and making it “harder for me to deal with everything.” As one
eighty-year-old gentleman explained, “I never felt like I was
particularly sensitive to pain, but after you’ve had so much of this

73
stuff happen then it wears you down considerably ... and I can’t
bounce back.” Even though this man felt that he had a high tolerance
to pain, he admitted that over time, the energy required to
constantly accommodate to the pain wore him down.
Believing the pain capable of infinite endurance, participants
reported consequences of overwhelming physical and mental fatigue.
Physically, lack of sleep and muscular fatigue weakened defenses
against other compromises in health status. Mentally, the
concentrated focus on pain itself contributed to irritability and
inflexibility so that coping with other stressors was significantly
impacted. One individual admitted that “I just don’t feel good - I
hurt too much ... the pain just consumes me. I’m edgy all the time ... I
think all the family knows that I’m hurting.”
Other respondents reported being “grumpy”, “irritable” and
generally “less friendly” because of their hurting. They were no
longer like themselves, the continuity of their personalities had
been disrupted. Feeling “worn down” and “worn out” by pain, one man
summarized the views of many when he said “I’m all worn out, and
I’m just too damn tired to fight this thing all the time”.

74
Being Less Resilient
Participants no longer had confidence in their physical powers
of recuperation, and missed the “endurance” and “stamina” needed
accommodate physical or emotional stress. Resiliency, the ability to
flexibly manage stressors, is often considered a innate or learned
trait linked with personality rather than external circumstances
(Haase, 1997). Participants believed their survival through previous
hard times testified to their resilient nature, yet they still
admitted being “challenged” by painful aging. Painful aging could not
be subdued, it eluded their best efforts to regain mastery over their
lives. One seventy-year-old participant named “the resiliency issue”
as the key to understanding what is so different about having pain
and being older.
When I was younger, I had more stamina. I don’t think I
would recover as well now, I just, don’t have the reserves
necessary to heal myself as well. I guess I would say I
had more resiliency then ... I could bounce back. That’s really
what’s so different about being older.
Perpetual pain drained strength and energy. Participants felt worn
out and exhausted, and worried that their fatigue left them
vulnerable to other health problems. They believed that their
experiences with chronic nonmalignant pain were common rather

75
than unique, and each hoped that “someone, somewhere” would
eventually discover ways to alleviate their pain.
Doing Less
Painful aging necessitated “slowing down”, activity
restriction, and renegotiation of daily plans. Study participants
learned to compromise, settling for “doing less” than they wished.
Some limited their activities because of fatigue, others limited
activities to avoid fatigue. Fatigue and pain intensified each other,
forcing participants to avoid traveling to the “places you’d like to
go” or curtail “the active things I’ve always done”. As one man
explained, “pain causes your body to really need more recuperative
powers, and you can’t get that when you’re fatigued.” Fatigue also
accelerated the perception of aging. For example, one man related
the he “used to be able to do things even in my sixties that I can’t do
now ... when you’re older and you’re in pain, you don’t always have
the get up and go, ‘cause your get up and go has gone up and went.”
One woman related that she was no longer “going to do like I
was when was younger, maybe just about half”. Another participant
said that her friends called her a “hermit” because she always

76
stayed at home. These older adults couldn’t keep going like they used
to do. For them, life was “closing down”, and “closing in”.
Limiting Adventure
Participants’ growing sense of needing to do less extended to
include other lifestyle accommodations, such as limiting adventure.
Being older and living with pain, participants described learned
cautiousness about their behavior. They believed that it was
important to take more responsibility about caring for themselves.
Study participants were reluctant to risk impulsive activities that
might prove harmful. “There are certain things that you just don’t
do.” Examples included “dancing all night and having a really great
time” or “taking a long hike in the woods” by yourself. Another
gentleman set aside his long held wish to visit China, stating that he
no longer felt that it made any sense to go “where I don’t know the
language ... there aren’t any of the comforts I’m used to,” and
“civilized” health care would be inaccessible if needed. These older
adults learned to enjoy solitary or social activities that were safer
yet still satisfying. Writing a book, painting, reading, and socializing
with friends were frequently mentioned. Participants also related

77
being wary of tackling strenuous home repairs, or embarking upon
“foolish” adventures that they might once have done.
Increasing Vulnerability
A universally reported concern was the fear of falling.
Participants felt less agile and more prone to tripping, and most
knew of friends who had suffered frightening consequences because
of a fall. Falling also represented more than potential injury; it
precipitated shame and embarrassment and threatened self identity.
“They would say look at that old man just laying there... so I tell my
wife to go through the house and eliminate all the road hazards”.
Most individuals associated increasing age with increasing
vulnerability to disease or injury. Study participants believed that
aging reduced their abilities to overcome poor health. Symptoms
from one health problem aggravated another, and then another;
repeating and accumulating in a spiraling effect until one might feel
as if one were “circling the drain”. A few participants sought to
decrease vulnerability to disease by ingesting foods and herbal teas
or vitamins that could provide “the basic building blocks” needed to
stay healthy. Others tried to remain active, believing that physical

78
exercise could optimize wellness. Most participants, however, were
not able to convey an effective plan to combat their vulnerability.
Juggling Multiple Health Concerns
In addition to chronic nonmalignant pain and advancing age,
each study participant described multiple ongoing health conditions
that necessitated changes in daily living habits. Non insulin
dependent diabetes, digestive disorders, and cardiac or peripheral
vascular problems were frequent conditions requiring daily
medication and lifestyle accommodation. Prioritization of these
conditions sometimes competed against each other, triggering
anxiety and confusion. Study participants sometimes disagreed with
health care professionals over the relative importance of their
health conditions. For one man, his most immediately distressing
pain symptom ranked higher than the more subtle signs associated
with long term problems.
[They] always want to talk about my diabetes, and my heart.
And well, I know they’re big problems...But I can live with
them, or at least I can live with them right now. But this
back, that’s my biggest problem. Not to them, but to me. And
it seems like if that’s the biggest problem to me, then that’s
what we should be working on ... Doctors ignore [my back pain]
because they can’t do nothing about it. But me, I don’t have that
luxury. I can’t ignore it. It affects me 24 hours a day.

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Juggling these multiple health concerns seemed to result in a “lose-
lose” situation for participants. The constant shuffling of multiple
and sometimes conflicting treatment strategies became perplexing
dilemmas with no easy answers.
Participants believed that chronic nonmalignant pain both
initiated and prolonged poor health. One individual said that “to me,
that’s what is ruining my health.” Another added “your health is like
slipping away, and the pain just makes your health so much worse ...
the pain is really killing you, in the big picture.” Chronic pain was
felt to aggravate and accelerate other health problems, so that
“when one thing starts then another starts, and another.” For these
older adults, chronic pain symbolized poor health, it was more
noticeable than some of their silent conditions such as hypertension
or diabetes.
Sensing an Uneasy Future
Participants were uneasy about their future. They projected a
downhill trajectory of increasing pain coupled with a decreasing life
expectancy. One woman stated “I know I won’t live very long, I just
won’t.” Dreams of longevity were now tempered with fears about a
painful and premature death. Expecting their pain to continue for the

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rest of their lives, participants were ambivalent as to whether a
shorter future was good or bad. They wondered aloud “how bad can it
get?”
Some participants admitted contemplation of their eventual
demise at great length. They could reflect at length on life, and
talked with relative ease about the subject of death. Painful aging
was interpreted as a way of preparing for death. One participant
described the experience as “fading away”. For one man, only death
could “release” him from his suffering. For another, it felt as if he
was reaching “the finishing line” of life. Study participants who
talked openly about death shared a strong faith in God. Alluding to
eternal life after death on earth, they were not afraid. They did not
think their life would “come to a screeching halt”. Instead, they
were comforted in knowing that “greater things await in heaven”.
Others were openly discouraged about their current “state of
affairs” and worried about their future. Some participants were
disappointed in their apparent “bad luck” and others were angry that
no one could help them live more comfortably. One eighty-year-old
man said he felt victimized by his pain, saying “I don’t like to be
victim to anything or anyone, but this pain kind of keeps me there.”

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He went on to say “I always thought that my life would be somehow
more of what it was always like. But it’s not...I never thought my
life at eighty would be filled with back pain and continuous doctor
visits.” His anticipation of vacation cruises and pleasurable living
after retirement had been replaced with unrelenting pain and misery.
His pain was “killing” him, and his frustration at being unable to
change his circumstances made him angry.
As participants reflected upon their painful experiences, or
contemplated their future, they frequently mentioned the lack of
adequate treatment strategies available to them. They believed that
their lives could be greatly improved, if only for a short while, if
their pain could be lessened. Significantly, very few of the older
adults participating in this study had been able to find physicians,
nurses, or therapists who offered them any hope.
Professional Indifference
Study participants consistently found that reports of chronic
pain unrelated to a diagnosis of malignancy or any major disabling
disease were treated by health care professionals with indifference.
Participants were baffled by their clinicians’ professional non¬
response, but a review of medical literature uncovered a probable

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explanation. Until early in this present decade, chronic nonmalignant
pain was labeled “benign” pain (Bonica, 1990). Furthermore, medical
texts reported less sensitivity to pain and increased tolerance
among older adults (Harkins & Price, 1992). From this perspective,
the medical community agreed with one physician who explained,
“there is convincing evidence that painful deterioration is
inherently programmed over time”, yet in general “they [older
adults] seem to adapt fairly well.” Allied health professionals
followed the lead of their medical colleagues, perceiving little
impetus to address a nonproblematic concern or correct what was
believed to be “essentially normal”.
Refuting conventional medical wisdom, study participants
reported a high sensitivity to chronic nonmalignant pain, intolerance
rather than tolerance, and disastrous effects caused by the pain.
However, participants found health care professionals to be
uniformly less than helpful. Participants knew about successful
treatments for even the most complicated of health problems, so
why wasn’t anything available for them? This paradox perplexed
them. “All those specialists ... what good are they? It shouldn’t take
a rocket scientist to figure this out. They’ve got all this fine

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education, all this experience, you can’t tell me that there isn’t
others like me.”
While the lack of available medical expertise was
discouraging, the lack of sympathetic understanding was
distressing. “You get the impression that they [physicians] could
care less. “ Participants’ plea to the community of health care
professionals was for compassion.
If I come to you and say that I hurt, don’t tell me it’s nothing.
If I say that something is hurting, then that means something
is wrong. It’s not just in my head, it’s something that won’t
go away, and I worry that it might be a really bad or terrible
thing. After listening and really caring about what I have to
say, explain to me what my options are and what you think I
should do. Don’t just say ‘urn hum’ and write a prescription.
My pain means more than that.
Living with chronic nonmalignant pain was difficult for study
participants. They found few resources available to assist them and
fewer that were sympathetic to their problem. Most of these older
adults no longer believed that others could help them. Instead, they
focused on their own responsibility to “stay creative”, “be
attentive”, and “keep on top” of their pain. When even their own
efforts at seeking relief failed, participants believed there was no
further recourse. Not knowing what else to do, they endured.

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Summary
This chapter reviewed study participants’ perceptions related
to chronic nonmalignant pain and aging. They consistently linked
their pain with their age. Some participants believed their pain
necessarily accompanied aging, others associated their pain with an
ongoing medical condition that was further aggravated by aging.
Because of their advanced years, participants believed they endured
more pain that was consistently met with professional indifference.
Chronic nonmalignant pain was stressful, and these study
participants believed that they were less able to “bounce back” from
its effects. They developed explanations about their pain etiology
and projected trajectories about its duration. Chronic nonmalignant
pain wore them down and contributed to poor health.
Theoretical analysis of merging relevant concepts produced
the basic social psychological problem of painful aging among study
participants. Painful aging was believed to be a deadly combination
that was expected and endured. Its consequences included wearing
down, being less resilient, doing less, limiting adventure, increasing
vulnerability, and the juggling of multiple health concerns.

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Participants saw a shortened future, and wondered aloud if painful
aging was actually a way of preparing them for death.
This chapter laid the groundwork for the following chapters
addressing the basic social process used by participants to deal
with the problem of painful aging. The older adults participating in
this study utilized the basic social psychological process of marking
time to redefine their time perspective. Marking time was a way of
rethinking how they perceived the passage of time while enduring
the experience of painful aging. Painful aging profoundly affected
the lives of these study participants, and it is through their
experiences that others may begin to understand this complex
phenomenon.

CHAPTER FIVE
MARKING TIME: THE BASIC SOCIAL PSYCHOLOGICAL PROCESS
In the previous chapter, I described how chronic nonmalignant
pain combined with advancing age to produce the problematic concern
of painful aging. In this chapter I explicate how painful aging
heightened participants’ awareness of time, its presence and its
passing. Painful aging also destabilized how time was ordered and
how it progressed. Participants recognized that “time just keeps
going on, just keeps ticking away”, but they also recognized that
circumstances could alter its perception. As one sixty-seven year old
said, “time keeps going, it’s what I do with the time is what’s
different”. Participants went through the basic social psychological
process of marking time when redefining time perspectives. Marking
time wasn’t a conscious decision to think differently about time, it
was more of an instinctive process of refocusing and rethinking
about time that arose as participants became more aware of their
painful aging. Subprocesses of marking time include recognizing
personal mortality, living day to day, and forecasting an uncertain
86

87
recognized that their pain and age-related circumstances kept them
from moving forward through the time remaining in their lives.
Participants went through the basic social psychological process of
marking time as they redefined their time perspectives. Marking
time wasn’t a conscious decision to think differently about time, it
was more of an instinctive process of refocusing and rethinking
about time that arose as participants became more aware of their
painful aging. Subprocesses of marking time include recognizing
personal mortality, living day to day, and forecasting an uncertain
future. Exploration of these subprocesses will be presented in the
following chapter.
Definitions of Marking Time
When someone says they are “marking time”, others generally
interpret this phrase to mean that no progress is being made, and
one is awaiting future developments (Neufeldt & Guralnik, 1988).
Prisoners employ the process of marking time while they are
awaiting release, as do military personnel while awaiting discharge.
Employees sometimes mark time while waiting for their shift to
end, and students occasionally mark time while anticipating the ring
of a school bell. Sick people find themselves marking time before a

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diagnosis is made, and frail elders mark their time before death. In
each situation, the phrase “marking time” includes a heightened
awareness of time itself and a perceived lack of forward
progression through time while waiting for something to happen.
In this study, participants used the phrase “marking time” to
describe their own struggle with the passage of time. Advancing age
reminded participants of their limited future, and pain narrowed
their focus to a day by day existence. They waited for present time
to pass: they awaited an uncertain future. Participants could not
resolve the problematic concerns associated with painful aging, and
could not resume the lives they had once led. They believed that
chronic nonmalignant pain was wearing them down, and increasing
age lessened their ability to overcome resulting disability. Marking
time described their efforts to move through time when time itself
seemed to be standing still.
Participants offered their own definitions of marking time.
They explained that “when you’re marking time you’re not going
anywhere ... everything is just stopped. You’re waiting until
something happens and you can go on.” One participant used a
military analogy, defining marking time as a process of “marching in

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place and going through the motions, but not really going anywhere.”
An eighty-two-year-old drew upon his own experience with pain and
illness to define marking time. He believed that marking time
implied a state of existing in the present while awaiting some kind
of outcome. According to him, marking time meant “you’re not really
living. It’s not like you can plan any future or really do anything, you
are just existing.” So it was for most study participants, because
painful aging immobilized them physically and emotionally. They
were marking time until something happened to change a persistent
state of being.
Some participants included the anticipation of change into
their definition of marking time, believing that “everything revolves
around that particular event you are marking time for”. When they
were suffering, they hoped for pain relief. When they were
comfortable, they worried about when the pain would return. If they
believed they couldn’t go on, they prayed for death. Participant
definitions of marking time reflected personal knowledge; their
definitions were embedded within the context of their lived
experience. Marking time was more than an abstract phenomenon to

90
them, it was a phrase that summarized how they thought of time
while enduring the experience of painful aging.
Markina Time and Enduring Time
Participants’ experiences with painful aging forced them to
endure increasingly painful and distressing circumstances. Enduring
is defined as the capacity to last or get through an experience or
intolerable situation (Morse & Carter, 1996). Some participants
lived with gradually deteriorating changes and others experienced
abrupt fluctuations in sensation or function. Painful aging
destabilized participants’ confidence in their ability to endure both
present and future. They did not know how they could get through
some situations, or last through others. One participant explained
that he had always been “the strongest person I’ve ever known” until
his back pain forced him to question whether he could even attend to
his personal needs. Another stated how “amazed” she was that she
could keep on going despite her “awful nerve pain”. Participants
sensed the need to keep enduring for as long as necessary, and
marking time was the process that could facilitate their endurance.
Morse and Carter (1996) identified three types of enduring;
enduring to survive, enduring to live, and enduring to die. Enduring to

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survive occurred in response to overwhelming physiological threat,
enduring to live occurred in response to the overpowering
psychological perception that no available alternatives could
immediately end the distress, and enduring to die occurred when
individuals recognized terminality but struggled to complete
preparations for death. The older adults in this current study
described all three types of endurance as they struggled with their
painful aging.
Study participants were enduring to survive when they
believed their pain was associated with an acutely threatening event
related to disease progression. One gentleman lived with chronic
chest pain, and he had already undergone four angioplasties to repair
his coronary arteries. He compared his cardiovascular system to
“rusty old pipes”, his doctor was his plumber. He endured recurrent
periods of angina that he believed would someday precipitate
immediate death. During each anginal episode he forced himself to
concentrate on keeping himself alive, marking time from moment to
moment while awaiting an outcome. This participant was enduring to
survive, he struggled to outlast each episode of chest pain.

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Participants were enduring to live when they believed their
pain was caused by physical decline or some structural
reconfiguration within the body. Aching joints and muscles, phantom
pain from an amputated limb, or the fiery burning from herpetic
lesions all interfered with their lives, but were not perceived as
life-threatening. Participants did not anticipate dying in the near
future. They believed that little could be done to ameliorate their
pain, and so waiting out the most uncomfortable periods of time was
their only option. Time seemed to pass very slowly during these
painful times, and participants tried to move through time by
marking time. These participants focused on the task of enduring to
live, trying to maintain and last through the difficult times in the
hopes of less painful times in the near future.
Participants who anticipated death were in fact enduring to
die. They struggled to forestall death for as long as possible, but
were acutely aware that they were dying. Patterns of enduring to die
varied among study participants. Some participants aggressively
fought off their anticipated death; they were unable to consider any
other response. As one man stated, “I keep on fighting. Even when
there’s no options left. I have to...It’s my nature.” Other participants

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responded with more of a reluctant rationalization. “I just have to
take it, there’s nothing more to do about it.” Lack of aggression did
not mean that participants were more accepting of death, they were
simply less conspicuous in their quiet resistance. Regardless of how
participants mobilized their resources when prolonging life,
enduring to die was exhausting. Time was both too long and too
short, present suffering was difficult to endure and the future was
unfairly limited. Marking time helped participants make sense out of
these two conflicting time perspectives while they were enduring to
die. They could focus on the present and complete whatever needed
to be done as they prepared for death.
Waiting For Something To Happen
Participants’ focus on their present status was always
tempered with the anticipation that something could happen that
would substantially change their current reality. When participants
could anticipate something that might alleviate pain, they marked
their time while awaiting pain relief. The ongoing experience of
chronic nonmalignant pain taught participants that pain relief was
only temporary, and so they continued marking time during more
comfortable times because they “knew” their pain would return.

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When they had “used up” all their options to find pain relief, they
awaited death.
Anticipating Pain Relief
Participants who focused upon specific instances of marking
time used examples about how they waited for pain relief. One
woman lived with an unusually painful neurological condition that
doctors told her had been precipitated by prolonged exposure to
gasoline fumes. After driving into a gasoline station, she discovered
that she had inadvertently interrupted a robbery in progress. Two
masked men forced her to remain in her car while gasoline was
sprayed at her face. She managed to escape before being set on fire,
but lived with constant headaches and an extreme skin sensitivity.
Physicians and counselors had attempted numerous efforts to
alleviate her pain, and her physicians currently were prescribing
long acting narcotics that could only be taken every twelve hours.
This medication relieved her pain enough so that she could perform
necessary activities of daily living, but its effects seemed to fade
during the two or three hours before her next dose was due. Her
prescription limited her to two pills a day, and so there was no way
she could “sneak in an extra dose”. Those painful hours before her

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next dose of medication always seemed to pass very slowly. She
described feeling as if everything in her life was “on hold” while
awaiting the medication that could relieve her pain, and so she
interpreted marking time in a very concrete sense. Marking time
meant lying still while trying to limit anything that would cause
further pain until the alarm sounded on her watch. Twice every day,
she counted the time before her medication was due, waiting until
relief could be obtained.
Another participant described how marking time defined his
complete existence while awaiting a hip replacement. For him, his
continuously severe pain was “pure hell”. The constant aching and
sporadic “jolts” of hip, back, and leg pain seemed to be steadily
increasing, and each day was increasingly intolerable for him. At
sixty-seven years of age, he was advised by his orthopedic physician
to wait “as long as possible” before undergoing the needed hip
replacement. This man didn’t know how long he could endure the
pain, or how much worse it would get. He had tried to “cry uncle”
more than once to his physician, but was repeatedly urged to wait
“for awhile longer”. Time seemed suspended for him as he waited
out every minute of every hour of every day. When telling me that he

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was forced to wait another month for his next physician
appointment, he added “it might as well be another year”. His
perspective of time had narrowed and shrunk to only include the
present. Constant pain made every moment like the next, and the
perceived lack of progress while awaiting pain relief distorted his
sense of passing time. Marking time was now a continuous reality
while waiting for his surgeon to determine that he could undergo a
needed procedure.
Both of these participants were enduring to live, struggling to
get through the painful times in anticipation of a better future. Time
seemed to stand still while they had to endure a painful present.
They were marking time to get through the time, trying to move
ahead into a better future.
Anticipating Pain Return
Awareness of time receded into the background when
participants could enjoy periods of time filled with relative
comfort. As one woman pointed out, “When it [time] isn’t an issue, I
don’t ever think about it much.” Yet participants described living
with the constant threat of returning pain, and so they marked time
while awaiting the inevitable return of their pain. As one seventy-

97
three-year-old explained, “I have the attitude that if it [the pain]
stops, then I can always enjoy until it comes back. I mean it may be
gone, but its not really gone because it will always come back.”
One sixty-five-year-old participant described how her life had
changed because of her chronic neck pain. The pain had been
extremely intense, but it had lessened considerably within the last
year. Still, the memory of her pain continued to haunt her. After
“firing” her doctor because he had prescribed numerous medications
that left her “in a fog”, a physical therapist advised her to initiate a
form of cervical traction that could be done at home.
The physical therapist used it at first. It hangs down from
the top of the door, you know, not the door, the door jamb.
Then I put my head in it and pull the cord until I am standing
up and can feel the weights working. I keep pulling and before
long I am standing up and the weights are pulling just so. Then
it starts getting better real soon. It’s kind of like a sling I
guess...It looks like I am trying to hang myself, but it’s the
only way, the only thing that helps.
At the time of her interview, this woman believed that most of her
intense neck pain was gone. She was able to return to work in a
limited capacity, and she was able to carry out many of her
activities of daily living. What remained, however, was heightened
vigilance about the possible return of her pain. She cautiously
resumed some of her daily activities, but always carried her

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cervical traction apparatus with her in case the neck spasms
returned. The episodes of neck pain had not entirely gone away, they
had only diminished in frequency. She admitted that she was “a lot
better”, but marked her time of relative comfort because she knew
the pain would eventually return.
This woman was also enduring to live, but her struggle was to
preserve the present. Moving into the future involved risk because
the future held a possibility for returning pain rather than pain
relief. She was holding on to her present physical status, and she
was marking time as a way of predicting the future. By counting the
time between episodes of neck pain, she believed that she could
possibly be able to ascertain when the pain might or might not
return.
Anticipating Death
When participants no longer perceived any options except
death, they considered themselves “at the end of the line”. Under
conditions of advanced age, frail health, or extreme suffering, the
definition of marking time evolved into a euphemism for “waiting to
die”. One eighty-year-old summarized his despair when he said “I
can’t get around. I can’t keep going, and I’m just marking time.

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Marking time until I finally croak.” A frail eighty-two-year-old
elaborated further. He described living in “a different world” that no
one could possibly understand unless they were “in these same
shoes”. His body was weakened from congestive heart failure, and
his joints protested his every move. He had been told by his
physicians that nothing could be done to help him, and so he awaited
his “fate” and presumed that he was awaiting death.
Marking time means that nothing can be done. You’re at the
end of the line here...It’s hard for you to get it because you’re
not living in the same kind of world we are. In the world I live
in...nobody understands how bad it is. No regular people know
what it’s like. Life gets so limited, very uncomfortable, and
you have to live in a dull reality, kind of half life. There just
isn’t much time left.”
This man was really enduring to die, because he believed that he was
approaching “the end of the line”. Marking time was a process that
he went through while trying to last as long as possible and
preparing to die.
The Private Experience of Markina Time
Suffering was a private and personally subjective experience,
and participants focused inwardly to ease their distress and “make”
the time pass. One participant reflected on how she privately
counted each minute during the “bad times”. “I would start mentally

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counting the minutes because I know I can always get through a
minute. No one knows what I’m doing, but it’s the only way I can
make the time pass.” Another participant added that her pain was
very “personal”, and she alone had to “deal with it”. Participants
reasoned that the private experience of suffering necessitated inner
focus and mobilization of personal resources. Marking time was not
something that could be shared with others, it constituted a private
and personal effort to refocus and redefine time so that they could
endure and survive.
Health care professionals, family, and friends either did not
recognize or did not acknowledge the extent of suffering that these
participants experienced. Participants themselves believed it was
socially inappropriate to openly speak of their suffering.
Participants limited their interactions with others, and some of
their deepest feelings about pain, age, and death only surfaced
within the context of humorous jokes or stories. This reluctance to
openly share concerns sometimes resulted in what Glaser and
Strauss (1965) called the ritual drama of mutual pretense, in which
everyone was aware of another’s suffering and anticipated death but
no one spoke of it openly. One man explained that he and his doctor

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both knew he was going to die but it was never discussed, because
“it’s better not to talk about it”. Other participants confided that
they were they only ones who really knew “what was going on”.
These situations exemplified what Glaser and Strauss called closed
awareness; only the participants themselves understood the true
nature of their distress. Misinterpretations about how pain or aging
affected participants’ lives heightened their anxiety, but the lack of
open communication prevented others from dispelling their fears.
Marking time while enduring pain, waiting for pain to return, or
anticipating death was a lonely experience that facilitated
participants’ own struggle through time but isolated them from the
guidance and support they so desperately needed.
Some participants had specific reasons for not disclosing their
suffering. The woman who suffered increasing pain before each dose
of medication had been told that any requests for additional
medication would be construed as a sign of addiction. Her daily
experience of marking time was therefore concealed from others
because she didn’t want anyone to think she was an addict. The
sixty-seven-year-old man who described his suffering while waiting
for a hip replacement worried that others would think he was a

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“wimp” if they knew how much he was hurting. When comparing
himself to others his age, he believed that his pain was making him
“old before my time”, and this realization distressed him both
physically and emotionally. Unlike others who were close to him in
age, his pain had prematurely aged him, and he interpreted this as a
sign of weakness. His physical suffering was compounded by the
mental anguish of his own perceived inadequacy. He described being
“devastated” by his pain, and he chose to isolate himself from
others to avoid sympathy, pity, or disgrace. He preferred to endure
his pain in silence, and mark his time in private.
Socially Unacceptable Topics
Participants stated that they avoided discussions associated
with pain, age, or death because these were socially uncomfortable
topics. No one enjoyed listening to a litany of complaints from
others, but at the same time participants were distressed that there
was no one to share their own concerns. One participant admitted
that he “would like to have a place where I could ventilate more.
But, there really is no place for that.” He also suggested that people
like himself, people who were suffering, needed “a wailing wall”
where they could cry out without enduring social criticism. For him,

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his compassionate listener became his faithful dog. This dog was his
confidant, who was “as loyal and loving as any dog can be...always
there when I need her, and never critical” when he needed to cry.
Another participant, seventy-three years of age, believed that
people experiencing “real pain” always suffered in silence. She
assumed that the socially correct response to pain was to stay quiet
and carefully guard one’s emotions. She also believed that this
response was “only natural” when someone was really hurting. These
assumptions reinforced her own behavior, and set a standard for how
she believed others should deal with their pain.
I know that some of the others hurt like I do, and even
worse, but still, I don’t think that all of them that complain
so about one thing or another, are really hurting like I do.
They’re just squawking, and really, it’s not the same...See,
I think that when you really have pain, you probably don’t
say much about it. But some people just complain about
little things all the time. That’s all they do, and it’s so
tiring...It’s better to keep these things to yourself.
Partial Disclosure Using Humor
Many participants believed that you were supposed to remain
cheerful and uncomplaining, even in the face of great adversity.
It was important to maintain a public appearance that conveyed well
being, minimizing pain and suffering to others. Presenting an image
of inner strength and positive attitude steadied their own emotions

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and helped keep their sense of personal integrity intact. Contriving a
public image to hide private anguish is a common phenomenon
(Goffman, 1959), and participants acknowledged doing this because
they believed that socially uncomfortable subjects were best kept
private and undisclosed. When they found that could not always
pretend that all was well when it obviously was not, they partially
disclosed their suffering to others through the use of humorous
remarks and jokes. One participant shared his carefully rehearsed
answers that he had developed when others asked how he was doing.
People say to me ‘how are you? You’re looking pretty good.’
And I always say ‘yeah, I’m in pretty good shape for the
shape I’m in,’ What else can you say? They ask you how
you are, and if you tell 'em how you are then they don’t
want to hear that. That’s against all the social conventions
you know. So, sometimes I tell them I’m still trying to
figure out what looks so good and feels so lousy.
Death was the one subject that was particularly avoided, and
participants who believed they were marking time while awaiting
death lived in a private world of anguish. Participants recognized
that their children and grandchildren were uncomfortable with
discussions about anticipated death, and had found their doctors too
preoccupied with the business of keeping them alive. Participants
had no one to seriously confide in about their death related anxiety,

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and this inner tension frequently surfaced in the form of humorous
jokes. As one man remarked, “death is like sex, it’s always in the
corner of your mind. Everyone does it, but no one talks about it.” This
form of humor, gallows humor or black humor, has long been used to
release the painful emotions and chaotic distress associated with
suffering and death (Robinson, 1978). When the possibility of death
could not be ignored, participants used humor to partially disclose
their feelings. One man who lived with his wife in a retirement
community reported that he and his peers frequently talked about
death.
You younger folks think about death, and think it is a bad
thing. Don’t like to talk about, you fear it. But it’s not like
that. It’s kind a joke really, no big deal. We joke about it a
lot where I live. About dying.
Private Misunderstandings
When participants had no one to talk to about their fears
concerning death, they sometimes mistakenly believed that they were
closer to death than they really were. One seventy-six-year-old kept
trying to tell her daughter that she might soon be gone, but the
daughter would not tolerate any discussion concerning death. This
woman, like other participants, was isolated by her experience with
painful aging. She relied upon her personal perceptions to explain her

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pain and predict the timing of her death. In her case, her assumption
may have been inaccurate. She interpreted her episodes of painful
bowel attacks as symptomatic of undiagnosed cancer, and she
believed that her doctor and her daughter were only trying to protect
her from the truth. Repeated physician office visits and multiple
colonoscopys failed to reveal any malignancy. Nevertheless, this
woman feared for her life whenever she developed nausea and
abdominal cramping. She interpreted the pain based upon past
experience. In her own past she had survived a painful bowel
obstruction due to a twisted intestine. The episodic abdominal
distress felt similar to that previous experience, and so she believed
that tumors were “popping up” in her bowel, and then mysteriously
disappearing. This woman had also cared for family members who died
after suffering from mysterious ailments. Since no one could
adequately explain the cause of her abdominal distress, she concluded
“it must be cancer, they just haven’t found it yet”.
This participant was further isolated from others’
interpretations of what was going on because of her overly dramatic
pleas for help. More than once she had left messages on the answering
machines of her son and daughter, stating that she would be dead by

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the time they received the message. Family and health care
professionals began discounting this woman’s complaints. They
rejected her interpretations of the pain, but could not dispel her
concerns. She continued telling others about her “awful pains” and her
anticipated death, but they no longer listened. She was marking time
while awaiting either confirmation of her fears or death. Sadly, her
private anxiety may have been based upon incorrect assumptions.
When presented with this possibility, she replied “only time will
tell”. Her own interpretations could not be overcome with vague
possibilities, and no one definitively addressed her fears. She
continued marking time while waiting to die.
Summary
Marking time was a core social psychological process used by
the older adults participating in this study as they struggled with
painful aging. They recognized the relentless passing of objectively
defined time, but identified heightened awareness and distortions in
passing time as they endured ongoing pain and advancing age. Marking
time was their way of redefining the passage of time through
periods of increased pain intensity as well as periods of lessened
pain intensity. Marking time also allowed participants to integrate

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the idea of a shortened timespan into their lives. When participants
believed that their painful aging could not be alleviated, they began
marking time as they waited to die. Because topics concerning pain,
age, and death were believed to be socially unacceptable,
participants contemplated these realities in private. Marking time
facilitated their progression through these realities, and this too
was a private experience that was not discussed or shared with
others. The following chapter explores the three subprocesses of
marking time that include recognizing personal mortality, living day
to day, and forecasting an uncertain future.

CHAPTER SIX
SUBPROCESSES OF MARKING TIME
Marking time was the central social psychological process used
by participants as they lived with painful aging. The three phases of
this process include recognizing personal mortality, living day to
day, and forecasting an uncertain future. Each of these phases have
been artificially separated in order to better understand their
differences and explain the conditions under which they exist. Among
study participants, phases were embedded within their experienced
reality and were not readily identified as separate experiences.
Recognizing Personal Mortality
The absolute reality of the human condition forces individuals
to consider the possibility of their own death as they grow older.
Americans stay relatively unfamiliar with death throughout most of
their lives (Atchley, 1994; DeSpelder & Strickland, 1992), and so the
process of becoming more comfortable with death is one of life’s
necessary transitions. Study participants reported a pragmatic
acceptance of a future death, but only those who were very old or
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those who were suffering with severe pain believed they were ready
to die.
Recognition of personal mortality was a gradual process that
evolved over time. As participants passed from the invincibility of
youth into the certainty of aging, they awakened to the probability of
eventual death. This progression was a form of status passage, a
theory generated by Glaser and Strauss (1971) which explicated how
individuals pass from one status to another during the course of their
lives. One seventy-six-year-old was able to explain how being older
sensitized her awareness of personal mortality when she said “I used
to close the door on death, wouldn’t even think about it. But now the
door is open. Not all the way, but just kind of natural like. You can’t
shut it out at my age.”
Aging and Mortality
Participants noticed signs of advancing age that increasingly
reminded them of their own mortality, but most tolerated and
accepted these physical changes as long as the “real me” remained
intact. Continuity of self was a source of comfort to them as their
bodies grew older and their lives became disrupted by changes in the
world around them. The physical signs of advancing age did not

Ill
threaten participants unless they were also associated with
increasing frailty or diminished cognition.
Physical changes
One participant recounted a long list of physical changes that
contributed to his perception of growing old . “I can’t run like I used
to, can’t really run at all...and my vertebral column has a decided
scoliosis to it.” He listed other “inconveniences” such as changes in
eyesight and hearing, and differences related to frequent nocturnal
urination. “My sleep cycle is disrupted every night because I have to
get up so often.” He believed he could “still think pretty well”, but
explained that some of his short term memory problems came about
“after that second bypass operation when I lost a few hundred neurons
or so.” He believed that these physical changes were “a normal part of
the aging process”, and at seventy-five he expected them. He presumed
that eventually these losses would accumulate, and he would be unable
to continue his life.
Another participant metaphorically compared her own aging to
the aging of “a nice outfit”. She focused more on her changes in
outward appearance, but still concluded that she would eventually
reach a point where she could no longer stay alive.

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When you get older...it’s kind of like a nice outfit...When you
first buy it, it looks great, and it fits nice, and the colors are
sharp you know. But then the color fades a little, and it gets a
little older, and it loses the shapes, and it don’t look so good
anymore. Kind of wears out. It’s still the same dress or
whatever, but it just don’t look the same. And that’s the way.
Us women...are the same women we were, and some of us were
gorgeous...but, and things started to go, here and there...some day
we’ll all be gone.
Changes in outward appearance were accompanied by changes in
physical strength, resilience, function, and overall health status. As
discussed in chapter four, these age related changes were often subtle
in onset and progression. It was the cumulative effect that caught
participants’ attention, eventually “tipping the scales”, meaning that
participants could no longer accommodate these changes and still
survive.
Social changes
In addition to physical changes associated with aging, there
were social role and relationship changes among family and friends.
Participants had watched children and grandchildren growing up. Most
participants had survived many of their immediate family members,
and long time friends were either getting old or had died. As one
seventy-four year old commented, “when your friends start dying off,
that’s a sign that you’re getting older....and it’s kind of a

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psychological downer.” Participants also began to realize that they
were older than their neighbors and current group of friends. “So that
makes you feel older. When your friends are born later than you.”
Social structural changes
American government and business institutions commonly
recognize persons over a specified age as older, offering senior
discounts and encouraging retirement. This practice reinforces a
general cultural sense that somewhere between fifty-five and sixty-
five years of age one is old (Friedan, 1993; Frolik & Barnes, 1991).
Study participants were willing to enjoy the age related advantages
offered by business and government institutions, but they also
reported that the acceptance of these benefits made them feel older.
One man remarked that he knew he was old when he began
automatically receiving senior discounts at fast food restaurants.
Another was reminded of his own age when he began receiving social
security checks.
Reminders of age sometimes led participants to modify
activities to better suit their age related expectations. One seventy-
eight-year-old woman worried about whether to renew her driving
license, believing that perhaps she should defer driving once she

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reached the age of eighty. Social structural references to aging were
never intended to remind individuals of their own mortality, but
participants believed they contributed to a generalized
acknowledgment of personal aging which then triggered thoughts
about how long they could survive.
Pain and Mortality
Participants always interpreted pain within the context of their
own aging. Some participants experienced gradual worsening of pain,
and they concluded this phenomenon was a normal part of aging. Others
experienced recurrent episodes of intense pain, and they interpreted
these symptoms as abnormalities within them that were worsened by
age. Participants’ common conclusion, however, was that the pain was
a physical sign that their bodies were deteriorating, their health was
failing, and these changes would eventually lead to death.
Gradual decline
The ongoing nature of chronic nonmalignant pain, with gradual
worsening, allowed some participants to see the pain as a natural
product of the aging process. When pain eased into the lives of these
participants, they gradually redefined an overall life perspective that
included death. “I have a positive outlook about this physical

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deterioration we call aging. It’s meant to be. And it kind of helps
prepare you for dying.” Gradual decline provided participants with
opportunities to adjust and adapt to their pain over time.
Episodic decline
Excruciating pain experiences made a more powerful impact on
participants’ lives, leading them to conclude that their pain was
killing them. “I agreed to the surgery because I couldn’t get around
anymore. That sciatica is a killer. I mean, it was literally killing me.”
Sometimes intense pain was associated with radical changes in
physical structure, as in cases where limbs had been amputated or
body organs had been surgically altered. Participants perceived these
resulting changes in physical structure as signs of irreversible
damage. Neuropathic pain was a common example, because it was a
form of horrifying and completely illogical pain that eluded successful
treatment. When chronic pain symbolized a “damaged” body,
participants believed they were less likely to live a long life. One
seventy year old pointed out that it was “almost impossible” to find
comfort, and he added “no one can endure this kind of suffering
forever...I have every reason to assume that this particular source of
pain will stay with me throughout my final hours.”

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Redefinition of Lifespan
Painful aging precipitated a redefinition of one’s lifespan. No
longer believing that they would live “forever”, participants started
wondering when indeed they would really die. One participant
summarized his estimate of personal longevity by saying “at my age,
I know I am a mere mortal. When I was a teenager, then I was
invincible, and I felt eternal. Now I feel my own mortality much more.
I know my days are numbered.” Another man reported that he was now
“looking older” and “feeling lousy”, and this was convincing him that
“it will really happen, I guess I really will die like everyone else.”
Feeling one’s own mortality heightened the awareness and
sensitivity to the passing of time. Participants related differences in
how they marked the passing of time. One man realized that his
perspective of time had changed because “the meaningful events that
you have start to always include something physical...like operations
or heart attacks. Stuff like that. When I was younger, meaningful
events were things like birthdays or promotions.” He laughed as he
said this, but there was a kernel of truth to what he said.
Unknowingly, he had begun to mark the passing of time by
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Participants agreed that they had paid little attention to the
passing of time earlier in their lives, as if there was an assumption
that time would somehow last forever. Being older changed that, and
some spoke of their awareness of a biological clock that was ticking
inside them.
I’m not sure if there is a biological clock ticking in each
of us or not. I mean, I never really believed that our own
destiny was predetermined. But at the same time, I’m a
realist, and I know two things - that death is inevitable,
and that my pain will hasten its coming.
Time passed too quickly for those who had an agenda of activities and
events that they wished to complete before time ran out. Others
believed they were no longer able to accomplish anything, and then
time seemed to pass too slowly. Time issues influenced how
participants redefined their lifespan, and the pervasive sense of
finitude could not be ignored.
Living Dav-To-Dav
Participants believed that painful aging prevented them from
moving forward through life. Participants often described their day to
day existence as suffering. Intense pain or prolonged suffering were
primary conditions that forced participants to attend to the
immediate issues involving survival. Perceptions of increased

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vulnerability to poor health or decreased functionality, caused by old
age or multiple health problems, framed a present oriented existence.
Charmaz (1991) found that individuals who lived with chronic illness
frequently focused on a present oriented existence as a way of
limiting their suffering and despair. Participants in this study
described a similar perspective. They alternated between painful time
and pain-free time, and did not want to consider a future that would
probably be filled with more suffering. The singular difference in
circumstances among these participants was that their advanced age
contributed to a greater certainty that their chronic pain would never
resolve. The older adults in this study believed their chronic pain
would stay with them for the rest of their lives. They marked time
while enduring the pain, and marked time while enjoying the
comfortable times that would surely be followed by more pain.
Flexible Time
Living day-to-day meant attending to the daily organization of
activities according to how participants felt at any particular point
in time. Participants cherished the freedom of being able to flexibly
manage their own time. Their time was their own, and they no longer
had to worry about meeting others’ needs. In most cases, they were

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now the ones being cared for and looked after by others. As one
retired woman pointed out, “when you’re retired and all, there’s more
of it [time], and that’s kind of nice really.”
Painful time preoccupied participants, forcing them to postpone
activities like shopping or card games with friends. Participants were
grateful that much of their time was unstructured, because they could
attend to their personal needs during painful time and reschedule
their enjoyable activities when they felt better. Participants did not
believe they could control painful aging itself, but their abilities to
reorganize time facilitated a sense of personal control. They could
plan and pace and prioritize what needed to be done without the
additional pressures associated with fixed time schedules.
Dav-to-Day Suffering
Study participants believed that the combination of chronic
nonmalignant pain and advancing age brought about daily changes in
their lives that led to suffering. Morse and Carter (1995, 1996)
conceptualize suffering as an emotional response to loss. Physical,
social, spiritual losses are necessarily endured, but it is in the
interpretive response that suffering occurs. Endurance and suffering
are sequential as individuals move back and forth between the

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experienced reality and the human response (Morse & Carter, 1996).
From an experiential perspective, this interpretation of the broad
concept called suffering aptly describes how participants used the
word. Suffering was not perceived as a necessary human condition, a
path to salvation, or an existential loss of meaning as has been
suggested in much of the theological and philosophical literature
(Buechner, 1973; Camus, 1955; Frankl, 1963; Kallenberg and
Brakenheilm, 1994). It may be that it is those things as well, but
participants believed their suffering came from enduring the daily
struggles related to painful aging.
Each participant experienced chronic nonmalignant pain, that
kind of unbearable physical pain that has no purpose or meaning
(Bonica, 1990). Their pain was not a helpful signal that warned them
to seek relief, it was instead a constant companion that had to be
endured. One woman said “I can’t tell you how I suffer so, but it’s
horrible.” Charmaz (1991) reported that those living with chronic
illness mourned the loss of health and well being, but they did not
describe the additional loss of youth. Living in a society that glorifies
youth and productivity (Atchley, 1994), participants felt distanced
from the rest of the world. As one man reflected, “It’s different when

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you’re old. The world is really made for younger people.” Participants
perceived these pain and age related changes as losses, and described
their experience as suffering.
Participants who were consumed by suffering could not go on
with the business of living. They focused on the present, trying to
limit their suffering to present circumstances and give full attention
to the present. By living day-to-day, they could avoid contemplating
an overwhelmingly dismal future filled with more pain and suffering,
or death. As one participant stated, “I pretty much live from day to
day. I do the best I can, and I realize that this painful problem will be
with me until I die.” This seventy-year-old went on to describe how
his daily experience with pain had overwhelmingly changed his life.
His suffering was obvious to all those around him, and he
acknowledged that he did not know of anyone else who suffered as he
did. All his days were filled with similar painful experiences, and so
he chose to keep focused on living “day to day”. He did not want to
know what lay ahead, and did not care to escape reality through
memories of the past. He “mourned” his losses one by one. He had lost
his health and his independence, and he could no longer participate in
an active social life or the community work that he had volunteered

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so frequently during his professional career. This participant chose to
“take things as they come” rather than risk being overwhelmed by his
losses. His time perspective had shifted to the immediate present,
and he preferred it that way.
Another seventy-six-year-old reiterated a similar approach to
life. She described “living in the now”, and planned to keep “living
like this until I die”.
Really, I kind of stay living in the now, if you know what I
mean. I don’t think that much about the future because really,
it might not be all that long. I guess it’s like this. I mean, if
I might start to worrying about something, like if the house
needs to be painted or something like that, then I might just
say well, I might not be around that long so I’m not going to
worry about it. So it’s like that. I just don’t think about it.
Painful and Pain-Free Time
Characteristic of all chronic nonmalignant pain experiences,
participants had both painful times and pain-free times. Even when
participants lived with continuous aching or chronic unrelenting pain,
they still described periods of time that were more comfortable for
them. They described how the passing of time could become distorted
as they alternated between pain and comfort. The transitions could be
rapid, or they could get “stuck” in one or the other. “There are days

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and days that can go by before I start to feel better. It’s like I get
stuck in the pain.”
During the times of hurting and intense discomfort, time passed
slowly and “dragged on”. Participants believed they had to continue
“keeping on”, but getting through the painful time was a slow process.
“I want it to be over but it just takes too long.” Another explained,
“when I’m feeling kind of low, [there is] nothing to stay occupied...and
the time seems to stand still. It doesn’t move at all.”
In contrast to the painful time, pain-free time allowed
individuals to participate in a variety of activities of their own
choosing. “I can be like doing all the time, keeping busy, working,
playing around, or whatever, and that time just seems to fly by. Just
be gone, like that. It goes fast.”
Participants compared their painful and pain-free experiences
in relation to previous experiences. An aching back might have been
perceived as very painful last year, but when a new pain developed
then it assumed a higher priority. “It used to be that my back was all
that was bothering, and I thought that was bad, But now that’s nothing
compared to my shoulder.” Differences in pain intensity, location, and
duration were all rated. Some called their adaptation to pain “getting

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tolerance”, describing how they learned to live with increasing
discomfort.
See I got this bursitis in my shoulder...and it aggravates. But
mostly it’s just there, but not really a big problem or anything.
It used to be, but I’ve been getting tolerance...Now it’s this leg.
I can’t get comfortable, I’ll bet I don’t get more than two hours
[of sleep] a night. Up and down, turn here, turn there, this
aching is just miserable.
Waiting out painful times
When participants experienced increased pain, they chose
between postponing or modifying their activities. Intense pain
necessitated putting life on hold, because participants had to allow
time to pass while they endured the pain. Cessation of activity
seemed to suspend the sense of passing time, but sometimes this was
necessary. “When it [pain] comes on, then I do the time slow, because
I’m waiting it out.”
One seventy-four-year-old admitted that time became “all
jumbled up” when he was really hurting. He described a recent
hospital experience when the doctor asked him how long he had his
pain. He replied that he couldn’t tell because he “lost all my senses”.
All he could say was that the pain had become intolerable, and
something had to be done. He was admitted to the hospital for
evaluation and possible surgical treatment. The new surroundings

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disoriented him, and both the pain and the pain medication contributed
to his inability to keep track of time.
Do you know what its like to be so sedated you’re like a
zombie, and yet it hasn’t touched the pain? Somebody is
always coming in and taking my blood pressure, checking
on me. Wanting me to turn over, or get up, or something.
So now the time is all jumbled up. That clock on the wall,
that’s the only thing that keeps me straight as to what
time it is.
After surgery, his pain had greatly improved. Reflecting on the last
few months of pain, he wondered aloud how he had ever endured it all.
Cherishing pain-free time
Enjoyable times were precious to participants, and so they used
this time to its fullest advantage. There were only two exceptions,
one being that there was a lingering uncertainty as to how long this
time would last. As one eighty-two-year-old explained, “I’m enjoying
my time. I may not have enough of it to suit, but I’ll take what I got.”
The other exception was that if participants overextended
themselves, they would “pay” for it later on in terms of experiencing
more pain. “When I do too much, I pay for it later. I like to enjoy when
I can, but I’m still on a short leash.” Because of these two exceptions,
participants’ enjoyment was tempered by the anticipated return of

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discomfort, distress, and disability associated with chronic
nonmalignant pain.
Forecasting An Uncertain Future
Painful aging led to participants’ presumption of a downward
trajectory that ended with death. As noted in chapter four,
participants developed three explanatory models that were used to
make sense of their painful aging. The most common explanation for
why they were hurting was one of progressive physical decline.
Deterioration was primarily attributed to aging, perceived to be
irreversible, and indicative of steady decline that would end with
death. Study participants who associated their painful aging with
irreversible physical changes also expected ongoing decline, but
presumed their declining trajectory would wax and wane along with
their pain. For some participants, each painful episode was believed
to extend disease progression. Now the pattern of decline was more
of a downward spiral, each new pain experience precipitating further
decline. As one participant commented, “my pain is like a roller
coaster ride”. The ups and downs associated with pain destabilized
his very existence.

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Participants typically forecasted competing scenarios that
ultimately depended upon what would happen in the immediate future.
Because they had multiple pain experiences located in various parts
of their bodies, they wondered about the sequencing and prioritization
of events. One participant described the intense pain of herpetic
attacks as the kind of painful experience that wore him down, but
concluded that it was his failing heart that would probably cause his
death. Another participant worried about her heart, but believed that
she would probably die from a broken hip because she had become so
unsteady with her hip pain. No one claimed to really know what would
happen in the near future, and so it was the timing of their descent
into terminal illness or death that caused the most concern.
Mishel (1990) defined uncertainty in the context of illness as
the inability to determine the meaning of illness-related events.
Participants lived with the chronic uncertainty of their future by
assigning meanings to their pain and then predicting outcomes. Short
episodes of angina were not as frightening as longer episodes. Chronic
aching was not as threatening as sudden accelerations in pain.
Continuation of one type of pain was not as anxiety producing as the
onset of a new pain. As the undesirable outcome of death became

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more certain, participants began to focus upon uncertainty related to
the timing of death producing events.
Uncertain Timing Of Death
Awareness of conditions forecasting a shortened future still
left the immediate outcome open to question. Specifically,
participants wanted to know when they would die. Would it be sooner,
or later, or now? The uncertainty led to participant suffering that
was of a different dimension than the suffering based upon
experienced reality. Suffering brought on by uncertainty, when
unequivocal answers to questions about anticipated death were
unknown, left participants in a psychological limbo that could not be
resolved. Morse and Carter’s (1996) definition of suffering is still
applicable because this form of uncertainty comes from a lack of
predictability, the loss of certainty. This dimension of suffering,
however, is entirely based upon experienced psychological and
emotional distress.
Uncertainty intensified when death could possibly happen in the
immediate future. In most cases, participants who wrestled with this
question of timing were those who could not accurately interpret
their pain. The pain might mean “something” or it might mean

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“nothing” The “something was death, either immediate or preceded by
some life-threatening event such as a heart attack. Participants
anxiously waited it out to discover if they would die now, or later.
Study participants describing anginal pain or distressing
abdominal pain were typically faced with the dilemma of whether
their pain was “nothing”, in which case it would eventually resolve on
its own; or “something” such as a heart attack or a bowel obstruction.
Verification of a medical emergency led physicians to say they were
lucky to have survived, but in other instances their physicians told
them it was nothing and they could go home. Participants were
perplexed; their pain always felt the same.
Along with the uncertainty of immediate outcome, participants
describing episodic attacks of intense pain reported an acute
contraction in their time perspective. There might or might not be any
time left. Participants responded with fearful anxiety. The passing of
time was suspended as these older adults marked time while awaiting
an outcome. As one woman recounted, “I knew I was going to die right
then and there. It was terrible. There was nothing I could do.” This
sense of time contracting and closing in was intolerable, but for the
participants in this study it was temporary. They had survived at

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least one acute episode of distress. As they became more physically
comfortable, time re-expanded for them and they could resume the
more tolerable sense of decreasing time in a more distant future. The
same woman who had earlier believed she was dying described her
present time perspective by saying “so like I said, I know my time is
limited. But I can live with that. At least I know it’s not right now.”
Wanting To Die
When participants believed they could not go on, they clearly
indicated they were waiting to die. If dying is thought of as a
transition period between the two statuses of being alive or being
dead (Glaser & Strauss, 1968), then waiting to die was like being in
limbo. Participants who found themselves in this state of being half
alive and half dead clearly wanted to move on to either being
completely alive or completely dead. Those participants who believed
that their lives were progressing on time, according to a natural
ordering and sequencing of events, were more accepting of an
anticipated death and wanted death to come. They reflected upon a
life filled with “joys and sorrows” and believed that painful aging
was a way of preparing them for death. One participant, ninety-three
years old, stated that she was “ready to die”. She had already

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survived her parents, her husband, and all of her friends.
Acknowledging that she had already lived “longer than most”, death
was no longer a stranger to her. Her life was becoming very limited
by arthritic “aches and pains”, and she could no longer go outside or
tend a garden that had given her so much pleasure. She now marked
the passing of each season. Fading eyesight and increasing hearing
loss limited interaction with the outside world, and she described
how she was quietly waiting for “whatever happens next”. This
participant believed that her old age was a “gift” from God, but she
was now prepared for a death that she hoped would come “some time
in the middle of the night”. Her approaching death was perceived as
natural and inevitable, and she was not afraid.
An excerpt from a local newspaper included a statement from
woman whose attitude about death also reflected acceptance (Mrs.
W.D., 1997). This woman was reflecting on her present status, and
said “time is ticking away very fast - on the meter of life, that is. I
am eighty-three years old, and arthritis has crippled my body so badly
that it is an effort to get out of bed each day.” She concluded that her
life was essentially over, she was “ready to die” but she didn’t know
when it would happen.

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Struggling To Live
When participants believed that the tempcral sequencing cf
their anticipated death deviated frcm what was expected, they
struggled tc live. They did net want tc be in an unccmfcrtable limbe
cf being half alive, they wanted tc be totally alive. They raged at
their pain, and cursed the circumstances that predicted a death they
were not ready tc accept. Seme participants cited personal reasons
for wanting to stay alive at any cost. As one man stated, “it’s just my
nature to never give up”. One eighty-year-old perceived that he was
being victimized by his painful aging.
The pain never gets any better ... I don’t see getting better
in my future any more ... I mean, at eighty, I am counting my
time left, and I had always thought my life would be somehow
more of what it was always like. But it’s not ... and the pain
is really killing me, in the big picture ... I don’t like to be a
victim to anything or anyone, but this pain kind of keeps me
there.
This man had spent much of his life looking forward to retirement, a
time in his life he had thought would be filled with travel cruises and
relaxed enjoyment. The onset of chronic nonmalignant pain robbed him
of that dream, and at eighty years of age, he believed that his life
would soon be over. Disappointment led to anger and hostility, and he

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described being unable to do anything other than mark his time until
he died.
Sometimes participants believed that they could not die while a
spouse still relied on them for support. That support might be
financial or emotional. For at least one man, he and his wife needed
his pension income. Another described how he had “always made the
decisions...she would be lost without me.” A variety of reasons
prevented participants from being ready to die, and so they struggled
to live “for as long as possible”.
Marking Survival Time
Participants who had lived through painful crises also valued
their time because they were celebrating their survival. After two
particularly painful years, one sixty-six-year-old woman believed she
was now steadily improving. She had been diagnosed as having
“myalgia”, a broad diagnosis that was given to her after going to her
doctor with complaints of “total body pain”. She described her pain
doing those two years as “overwhelming”, “constant”, and “pure hell”.
She could only “lie still and try to survive”, and confided that “if
Kvorkian had been around, I would have used him.

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A sudden onset of prednisone induced blindness precipitated
emergent surgical intervention. Following the surgery, she believed
that she immediately began to improve, and called this turn of events
“a miracle”. At the time of her interview she described feeling “achy”
and “only about fifty percent”, but reported that her intense and total
body pain was “mostly gone”. This participant went into great detail
explaining how she was “back among the living”, and described being
grateful for every new day. She described becoming very attentive to
her lifestyle now, and turned to vegetarianism and vitamins as a way
of protecting herself from any relapse. She acknowledged that life
never gave out any “guarantees”, but clearly cherished her “new lease
on life”. This participant exemplified how the memory of painful
experiences could redefine a life perspective. She was celebrating her
survival.
Summary
The three subprocesses of marking time included recognizing
personal mortality, living day to day, and forecasting an uncertain
future. The “deadly combination” of chronic nonmalignant pain and
advancing age led participants to redefine their own lifespan. They
stayed focused on a present oriented existence, and tried to limit

135
their suffering by living day to day. They waited out pain-filled time,
and cherished pain-free time. Acknowledging that time was limited,
participants struggled while forecasting an uncertain future. They did
not know the timing of their death, or how long they could endure
their suffering. Each of the identified phases exemplified how
participants were marking time while living with painful aging. Time
was a central consideration as participants vacillated between
waiting to die and struggling to live. Sometimes there wasn’t enough
time, sometimes there was too much time. Perceptions of passing
time were contextually situated. The constant process of redefining
time was subtle, but always present.

CHAPTER SEVEN
SUMMARY AND RECOMMENDATIONS
Summary
The purpose of this study was to develop a substantive theory
about the experience of chronic nonmalignant pain among older
adults. The widespread prevalence of chronic nonmalignant pain
among older adults remains underappreciated (McCaffery & Beebe,
1989). Clinicans do not know how older adults perceive their pain, or
whether their perceptions differ from younger counterparts. There
are recognized physical, emotional, and social differences that are
common among the population of older adults (Ferrell & Ferrell,
1991), yet the inherent heterogeneity among this population
precludes any simple generalization about the uniqueness of their
experience with chronic nonmalignant pain. Intuition and curiosity
initiated my search for a more complete understanding about this
phenomenon, and participant data generated from semi-structured
interviews could best inform me about the similarities and
differences of chronic nonmalignant pain as perceived by older
136

137
techniques of induction, deduction, and verification that are needed
to uncover the basic social psychological problem common to older
adults living with chronic nonmalignant pain, and then discover the
basic social psychological process used by these older adults to deal
with their problem. Constant comparison of participants’ words and
thoughts pertinent to their experience with chronic nonmalignant
pain led to the development of a substantive theory that explains the
unique nature of this common phenomenon in older adults.
Twenty-five older adults ranging in age from sixty-three to
ninety-three participated in this study. Each of these older adults
linked their persistent painful symptommatology with their
advancing age, and believed that the deadly combination of pain and
aging was a destructive process that could not be arrested or
reversed. Painful aging was the basic social psychological problem
that emerged from their interviews. Five health care professionals
also contributed interviews relevant to this study, and they further
acknowledged that the combination of pain and aging accelerated
physical decline. Everyone believed that little could be done to
improve this progressive deterioration, but health care

138
professionals failed to recognize that the experience of painful
aging was so distressing to older adults themselves.
Participants could not escape the reality of painful aging, and
began to realize a shortened future. Marking time was the basic
social psychological process participants used to integrate
awareness of personal mortality into their daily lives. They focused
on a present time perspective, living day to day, because their lives
were consumed with constant or episodic painful experiences. Time
seemed to stand still while participants suffered with painful aging.
They suffered physical pain, and they suffered emotional anguish
related to the uncertainty of how they could continue living as well
as when and how they might die. Marking time helped stabilize the
shifting time perspectives brought on by painful aging.
Recommendations For Practice and Education
Study participants reported that virtually no health care
provider recognized the significant impact that painful aging had on
older adults’ lives. Older adults in this study inferred relationships
between their pain, age, health, and the timing of their death with
minimal support or direction from their physicians and nurses. Older
adults were unsure how to live with painful aging, and issues about

139
time and its passing emerged as they struggled with painful living
and anticipated dying.
Participants in this study described difficulty in verbalizing
their concerns to others. They believed they were different from
healthy older adults because of their chronic nonmalignant pain, and
perceived that age related concerns set them apart from younger
adults who also experienced chronic pain. These study participants
described feeling isolated and alienated because of their painful
aging, and were unsure how to continue their lives. They marked
their time privately, and wondered aloud why no health care
professionals offered any encouragement, support, or direction.
Routine Inquiry About Painful Aging
Participants in this study believed that nothing could be done
to ameliorate their discomfort because friends, family members,
physicians and nurses all told them it was to be expected at their
age. Some participants accepted this information and suffered in
silence. Others were angry because they believed there surely must
be something that could minimize the painful symptommatology
associated with chronic nonmalignant pain and aging. Professional
nurses are uniquely positioned to encourage rather than suppress

140
discussion about how painful aging impacts the lives of older adults.
Nurses practice in a variety of independent and interdependent roles
that provide opportunities for assessment, intervention, and ongoing
monitoring of chronic nonmalignant pain among older adults. Routine
inquiry about the presence of pain and discomfort among older adults
plus exploration of concerns and potential treatment options should
be incorporated into daily nursing practice.
Assess and Document Pain Reports
The inherent subjectivity of chronic nonmalignant pain is a
problematic concern among health care professionals who rely upon
objective diagnostic criteria to validate its presence, and have been
led to believe that patient report alone is insufficient. Findings from
this study suggest that health care professionals should believe
older adults who report ongoing or recurrent pain, elicit information
about multiple painful locations, and encourage older adults to
monitor their own pain experiences so that patterns of helpful
strategies can be reinforced. Study participants averaged four
separate painful locations, and a lack of confirmatory physical
findings often allowed health care professionals to discount older
adults’ symptoms. Incomplete assessments with subsequent

141
inadequate documentation served to further invalidate older adults’
complaints and confound treatment efforts. Nurses should advocate
for optimal treatment to ameliorate pain. Reluctance to treat
chronic nonmalignant pain in older adults because of a greater
potential for pharmacological side effects must be balanced with
the known consequences of unrelieved pain. Doing nothing should not
be an acceptable option.
Demonstrate Professional Concern
Formal and informal educational efforts are needed to offset
the common misperception that chronic nonmalignant pain is an
expected consequence of aging that has little or no impact on the
lives of most older adults. Health care providers and lay public all
remain relatively unaware of its prevalence and its consequences.
Older adults living with chronic nonmalignant pain should be
encouraged to share their concerns about continued endurance and
their fears about death. Study participants indicated that they were
often preoccupied with questions about how they could survive
increasing pain and advancing age, yet they had little opportunities
to share their concerns. Some participants inaccurately presumed
that their pain was indicative of approaching death. Others were

142
unaware of potential treatment and assumed their pain would
continue to worsen as they grew older. The older adults in this study
relied on their private perceptions and interpretations of chronic
pain to estimate personal health status and relative longevity.
Interactions with their physicians and nurses could have
significantly reduced their anxiety and distress.
Listen For Indications of Markina Time
Discovering the basic social psychological process utilized by
older adults to work through the problematic nature of painful aging
was critical in understanding the complex psychosocial dynamics
unique among the population of older adults. This study identified
marking time as the core process used by older adults to stabilize
their sense of time while living with painful aging. Clinicians need
to become more familiar with older adults’ perceptions of marking
time so that they can offer better direction and support.
When older adults do complain of persistent or recurrent pain,
nurses are frequently situated in caregiving roles that allow them to
inquire how these older adults perceive time. Does time seem to
stand still for them while they are in great pain? If so, how do they
endure the pain and pass their time? Does the fear of more pain

143
preoccupy them even when they feel relatively comfortable? Do they
believe that time is running out, that they will die because of their
pain? Participants in this study reported that much of their anxiety
came from uneasiness about present time and uncertainty about
future time. Participants reported further discomfort related to
difficulties in sharing these concerns with others, their
apprehension and sometimes unfounded fears growing out of control
and overshadowing reality. Nursing practice and education can be
proactive by inviting discussion about these concerns, increasing
opportunities for increased social support and guiding older adults
towards development of useful strategies to minimize the impact of
painful aging.
Recommendations For Further Research
When I approached older adults about participating in this
study, I did not talk to any older adult over sixty years of age who
did not admit to some amount of chronic painful discomfort,
typically back pain. Discovery of such a high prevalence of even
minimal chronic pain suggests that ongoing discomfort among older
adults is so common that its absence might be considered atypical.
This study sought older adults who reported the experience of

144
chronic nonmalignant pain, and so sampling was limited to those
older adults who acknowledged the chronicity of their pain. Further
studies representing a wide variety of older adults should be
conducted to explore what is unique among those older adults who do
not experience any chronic nonmalignant pain. Quantitative studies
are indicated to learn more about the true incidence and prevalence
of chronic nonmalignant pain among older adults. Interventional
studies are also needed to learn more about optimal strategies to
enhance comfort and moderate pain. While pharmacological based
strategies should not be ignored, interventions focusing on the use
of support groups and individual counseling are indicated to guide
older adults’ issues related to marking time. Complete pain relief is
typically an unrealistic expectation for older adults experiencing
chronic nonmalignant pain, and so interventions designed to palliate
the impact of painful aging and enhance personal endurance need to
be further studied. Identification of specific personal
characteristics or situational contexts may emerge as key
indicators that suggest optimal pain management approaches.
Qualitative studies are indicated to learn more about what
constitutes chronic pain for older adults, and what characteristics

145
and dimensions differentiate chronic pain from the “aches and
pains” that are “uncomfortable but not really pain”. More studies are
needed to learn how social interaction influences older adults’
perceptions of painful and pain-free time. Qualitative inquiry is also
needed to learn more about the impact of open discussion on private
worries and misunderstandings related to persisting pain, advancing
age, and the passing of time.
The older adults participating in this study were all asked to
rate their pain using a range of numbers between “0” meaning no
pain up to “10” meaning the worst pain possible. All protested the
use of a verbal pain intensity scale because they didn’t like using
numbers, they had multiple painful locations, or a singular
assessment of intensity was believed to be inadequate. Participants
said that there pain was “more than a number”, and they had
difficulty conveying how and where they hurt when forced to
describe their pain using a single numerical indicator. Some
participants suggested that if a scale was necessary, they preferred
choosing pictures of faces to indicate the magnitude of their pain.
Others suggested the need to draw their pain on body diagrams.
Currently, it is not known whether older adults actually perceive

146
their pain intensity differently, whether they simply require
alternative strategies to adequately assess their pain intensity, or
both. Further research among older adults is needed to discover an
optimal method for quantifying pain intensity and localizing
multiple areas of discomfort.
One of the purposes of this study was to develop an
appreciation of the meaning of chronic nonmalignant pain to non-
institutionalized older adults. Findings from this study clearly
indicated that ongoing and recurring pain are perceived as
detrimental to functionality, quality of life, and overall health
status. These findings are consistent with similar studies focusing
on younger populations, and suggest that older adults are possibly
more affected by chronic nonmalignant pain because of its
interaction with the aging process. Further research is indicated to
prove or disprove this assumption.
This grounded theory contributes a substantive theory that
describes the basic social psychological process of marking time
that participants engaged in as they dealt with their painful aging.
This theory generates a new perspective on how older adults
experience chronic nonmalignant pain, and moves toward explaining

147
and predicting how older adults focus on time related issues. Further
research is needed to explore this finding and extend knowledge
about marking time. Do younger adults experiencing chronic
nonmalignant pain also engage in marking time, focus on the present,
or perceive their futures differently? Is marking time and the
anticipation of a shortened future exclusively found among older
adults experiencing chronic nonmalignant pain?
Researchers can also study the basic social psychological
process of marking time within other contexts. Does marking time
occur among other populations, perhaps among those who endure
other chronically distressing symptoms such as nausea or fatigue?
Can this basic social social psychological process be generalized
beyond its applicability to older adults experiencing chronic
nonmalignant pain? This study has introduced the phenomenon of
marking time, which is a useful construct to explain how individuals
think differently about time. Further studies focusing on this basic
social psychological process can expand current knowledge and
further areas of conceptual inquiry towards the development of
formal theory.

APPENDIX A
WRITTEN INVITATION TO PARTICIPATE
Chronic Pain Among Older Adults
Interview Volunteers Are Needed
65 years and older
experiencing chronic pain that is not
related to cancer
willing to talk to a researcher about what it
is like to live with chronic pain
If you are interested in being interviewed,
please speak with your health care provider
or support group facilitator.
Or contact:
Kathy Ebener, RN
University of Florida College of Nursing
904-296-4180 (office phone number)
148

APPENDIX B
INFORMED CONSENT
UNIVERSITY OF FLORIDA HEALTH SCIENCE CENTER
JACKSONVILLE, FLORIDA
Consent to Participate in Research
Chronic Nonmalignant Pain Among
Older Adults At Home
M. Kathleen Ebener, RN, MSN
Principal Investigator
904-296-4180
You are being invited to take part of a research study. This
consent form will give you information about this study and
answer your questions.
As you read, if any of the words included in this informed
consent are difficult to understand, please do not hesitate to
ask what they mean. You will be given a copy of this consent
form to keep.
What is the purpose of this study?
The purpose of this study is to talk to people like
yourself who have had some experience with chronic pain
not related to cancer. Health care providers do not know
how older adults live with chronic pain at home, and this
study will help us understand what it is like for you and
others. Information that you share with me in this interview
will be
149

used with information from others to help nurses better
understand ways of helping older adults who live with chronic
pain.
What will be done if you take part?
With your permission, I will interview you about your
experience with chronic pain for approximately one hour or
less. The conversation will be recorded on a tape recorder to
make sure I get your story straight. Only one interview is
expected, but I will ask for permission to contact you again if
I am unsure about something you said. Questions include
asking about what it is like for you when you have pain, what
kinds of things do you do to manage your pain, and what kinds
of things happen in your life when you are in pain. I will also
ask you to describe your pain. You may refuse to answer any
of the questions, and to stop the interview at any time. You
may also refuse additional interviews if you prefer.
What are the discomforts and risks you might expect?
There are no anticipated risks from participating. If you
become tired or uncomfortable you may end the
conversation. The conversation is considered private, and
none of the conversation will be reported to your doctors or
nurses.
Will the study cost you anything?
You will not be charged for taking part in this study.
What are the potential benefits of the study?
You will have an opportunity to discuss your chronic pain
experience.
By understanding more about how older adults live
with their chronic pain at home, doctors and nurses may do
150

a better job of advising older people how to take care of
their chronic pain at home.
What alternatives do you have?
You do not have to participate in this study.
Will your privacy be respected?
Your participation in this study will be kept confidential
and your name will not be made known to any other than Mrs.
Ebener. Interview notes will be coded and your name will not
be identified in any publication resulting from this study.
Your interview without your name will be shared with my
faculty advisor and student research seminar class.
What if there is an injury from the study?
It is not expected that the interview will cause any
injury. If you become ill or are injured because of this study,
you will need to seek help from your own health care
provider.
How can you get answers to questions?
Mrs. Kathleen Ebener, RN will answer any further
questions you may have regarding this study or your
participation. You may reach her 24 hours a day, 7 days a
week by calling 296-4180 and leaving a message with her or
the answering machine. In addition, if you have any questions
about your rights as a research subject, you may contact the
Chairman, Institutional Review Board, University Medical
Center, 655 West Eighth Street, Jacksonville, Florida 32209,
through Ms. Shari Shreve, IRB Committee Secretary at 549-
3136.
151

Can you quit at any time?
You may decide to withdraw from the study at any time.
Your participation in this study is voluntary, and refusal to
participate will cause no penalty or loss of benefits in
receiving medical care.
Are there any conflicts of interest?
Mrs. Ebener is not directly involved in your health care,
and will not receive any direct benefit by your decision to
take part in this research.
152

CONSENT:
You are free not to take part in this study. If you
choose to participate, you are free to withdraw your
consent and stop at any time without the decision affecting
your medical care. Before giving your consent by signing
this form, you have had a chance to have your questions
answered about the study, the inconveniences and risks,
and available alternatives. Based on this information, your
signature below shows that you voluntarily agree to
participate in this research. A copy of the entire consent
form will be given to you.
I, , hereby agree to
participate in a research study entitled “Chronic
nonmalignant pain among older adults at home”.
Patient Signature
Date
Witness Signature
Date
I have fully explained to
the nature,
purpose and risks of this study, and answered all questions
to the best of my ability. To the best of my knowledge, the
person signing this consent has had the study fully and
carefully explained and clearly understands the nature,
risks, and benefits of participation in this project.
Principal Investigator or Delegate
Date
153

APPENDIX C
INTERVIEW GUIDE
1. Tell me about your pain. What is it like for you when you have
pain? Can you give me an example?
2. When you think about your pain, describe some ways that are
different than how you thought about pain when you were younger?
3. What kinds of changes in your life happen when you are in pain?
(probe the physical, emotional, interactional, and spiritual
dimensions) (probe how interpersonal relationships are affected
when in pain)
4. Give me an example of a day when you are experiencing a lot of
pain? A day when you are not experiencing a lot of pain?
5. When do you make a decision to relieve your pain? Can you give me
an example?
6. Tell me how you try to limit your pain. Describe a time when you
did something about your pain, and what were the results? Can you
give me some examples?
7. What kinds of things do you do when you have pain? Describe a
time when you did something about your pain.
8. How do you take care of your pain differently when you are home
compared to being somewhere else?
9. Compare the ways that you take care of your pain to the ways that
someone else would do it? What are your experiences with health
care providers (nurses, doctors, therapists) about pain?
154

10. Overall, what is the most helpful in managing your life when you
have pain?
11. What do you want to tell others (nurses/ physicians/ family/
friends) about your pain?
155

APPENDIX D
PAIN QUESTIONNAIRE
1. If 0 is no pain and 10 is the worst pain possible, how would you
rate your pain right now?
012345678910
2. Using the same scale what is the worst amount of pain you usually
experience?
0123456789 10
3. Using the same scale what is the least amount of pain you usually
experience?
012345678910
4. Using the same kind of scale, how much does your pain affect your
general activity and sleep?
Activity 0123456789 10
Sleep 0123456789 10
5. How much does your pain affect your social life with friends and
family?
not at all not very much
some quite a bit a lot
6.How much does your pain affect your faith in God?
not at all not very much
some quite a bit a lot
156

7. How much does your pain affect your emotions and feelings?
not at all
not very much
some
quite a bit a lot
8. Where are the areas that you feel pain? (Check all that apply)
back
legs
hands
neck head mouth
arms chest all over
feet stomach other
157

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BIOGRAPHICAL SKETCH
Mary Kathleen Ebener is currently employed at St. Luke’s
Hospital in Jacksonville Florida as a clinical nurse researcher. She
maintains clinical and academic affiliations with Mayo Clinic
Jacksonville, Jacksonville University. Florida Community College of
Jacksonville, and University of North Florida College of Health. Her
practice experience exceeds twenty years within the clinical
specialty areas of acute cardiovascular care and pain management.
She is an active member of the American Pain Society, Florida
Cancer Pain Initiative, Florida Nurses Association, Southern Nursing
Research Society, Southern Pain Society, and Sigma Theta Tau honor
society.
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