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
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
Mary Kathleen Ebener
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
ACKNOW LEDGMENTS .................................. i i i
A BSTRA C T .......................................... v iii
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
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
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
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
A WRITTEN INVITATION TO PARTICIPATE .... 148 B INFORMED CONSENT ..................... 149
C INTERVIEW GUIDE ..................... 154
D PAIN QUESTIONNAIRE ................... 156
REFERENCES ................................. 158
BIOGRAPHICAL SKETCH ....................... 168
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
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.
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).
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
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
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.
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 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,
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,
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.
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.
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,
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
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.
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,
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.
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
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
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
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
(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 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
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
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
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,
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-
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
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
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
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
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.
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.
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 &
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
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
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.
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
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
live with chronic nonmalignant pain, and for uncovering the basic social psychological processes that are used as older adults work to ameliorate the problem.
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
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.
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
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
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
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
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
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
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
participation, (c) confidentiality of data, and (d) anonymity of participants.
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 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
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 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
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
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.
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
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.
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.
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.
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.
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
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.
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
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
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
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.
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
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.
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
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.
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.
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
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.
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
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
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
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
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
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
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
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
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.
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
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
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
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.
[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
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".
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
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
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
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
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.
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
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."
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.
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
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
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.
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.
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.
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
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
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
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
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