Not So Golden After All: The Complexities of Chronic Low Back Pain in Older Adulthood

Not So Golden After All: The Complexities of Chronic Low Back Pain in Older Adulthood Abstract Background and Objectives The study objective was to understand how Chronic low back pain (CLBP) impacts key aging concepts such as retirement, housing, health, and independence. Research Design and Methods Twenty-one pain clinic patients (66–83 years old) with CLBP engaged in 23 in-depth semistructured interviews, which were audio-recorded and transcribed verbatim. Guided by van Manen’s phenomenological method, researchers used line-by-line thematic coding to analyze data through an iterative process. Results Participants’ accounts illustrate the interplay between aging and living with CLBP. Under the larger theme “Not so golden after all,” results are reflected in five subthemes: (a) Falling apart; (b) Pain stigmatizes aging; (c) Hurting slowly, aging quickly; (d) Pain threatens independence; (e) The reality of unrealized futures. Discussion and Implications This study improves our understanding of how CLBP complicates growing older with regard to tarnished retirements and stigmatization. Findings highlight the importance of coordinated care and recognition of pain-related loss. Chronic illness, Pain management, Phenomenology, Retirement Background and Objectives The population of older adults is increasing both nationally and globally (Administration on Aging, 2014; He, Goodkind, & Kowal, 2016). In the United States, individuals aged 65 years and older increased by 25% to 44.7 million between the years of 2003–2013, and growth estimates suggest that this will more than double by the year 2060 (Administration on Aging, 2014). Chronic pain is exceptionally common among older adults (Molton & Terrill, 2014), and has been shown to increase with age (Donald & Foy, 2004). Chronic low back pain (CLBP) in particular is the leading type of musculoskeletal pain (Docking et al., 2011; Patel, Guralnik, Dansie, & Turk, 2013), and often persists into extreme old age (Hartvigsen & Christensen, 2008). In comparison to pain-free older adults, those with CLBP have more physical disability and poorer overall mental health (Rudy, Weiner, Lieber, Slaboda, & Boston, 2007). Age is one of the most critical factors associated with chronic pain. Compared to their younger counterparts, older adults suffer more from CLBP, seek less care (Knauer, Freburger, & Carey, 2010), and are more susceptible to poor pain outcomes, including disability and mortality (Gagliese, 2009). Older adults face numerous barriers in accessing chronic pain care, such as poor communication with health care providers, transportation problems, and psychosocial limitations (Park, Hirz, Manotas, & Hooyman, 2013). It is established that older adults often fail to receive adequate chronic pain treatment (e.g., Chodosh et al., 2004; McNeill, Sherwood, & Starck, 2004). Harkins (2005) proposed two reasons for this inadequacy: (a) in regards to age, pain is viewed as a secondary symptom of various comorbid conditions, with emphasis placed more on treatment of the pathology versus the pain; (b) pain may be misunderstood as a “normal” feature of aging, thus, ignored by health care providers. Though older adults are largely neglected from pain research (Gagliese, 2009; Melding, 1991), a body of qualitative work on chronic pain in this population is amassing. While some studies examined “successful aging” (Collis & Waterfield, 2015) and perceived good health (Richardson, Grime, & Ong, 2014) despite living with chronic pain in old age, most qualitative studies have documented the negative consequences of pain. Research indicates older adults living with chronic pain experience considerable impairment with regard to both their physical functioning (Wilcox et al., 2006) and social activity/engagement (Sofaer-Bennett et al., 2007). Furthermore, issues such as grief and loss (Gran, Festvåg, & Landmark, 2010), perceived vulnerability (Manoochehri, Shirazi, Tafreshi, & Zayeri, 2014), and purposelessness in life (Gran et al., 2010) have been identified. In regard to older adults’ pain, Gran and colleagues (2010) noted, “The consequences of suffering was experienced in the feeling of personal loss of integrity and was expressed as resignation, loss of initiative, isolation, insecurity, the feeling of being a burden, sadness, and being closed into own pain until death” (p. 29). Few qualitative studies on older adults with CLBP have been identified overall, and most pertain largely to treatment-related issues such as preferences, reactions to different approaches, and reasons for not seeking treatment (e.g., Edwards et al., 2015; Lyons et al., 2013; Morone, Lynch, Greco, Tindle, & Weiner, 2008; Makris, 2015; Teh et al., 2009). More recent studies, however, have poignantly illustrated the systemic implications (Stensland & Sanders, Under review) and physical, social, and emotional impacts (Makris et al., 2016) of CLBP in older adulthood. Additionally, (see Stensland & Sanders, Under review) reported how older pain clinic patients with CLBP describe and relate to their CLBP. While these studies offer valuable insight into the broad experience of CLBP among older adults, the present study seeks to expand upon this knowledge by shedding light specifically on key aging concepts such as retirement, housing, health, and independence in the context of CLBP. Examining CLBP through an aging lens contributes a needed perspective, as it uncovers issues unique to a population which suffers greatly from this condition yet remains largely understudied. Research Design and Methods This study is part of a larger study conducted in a Midwestern college town which examined the experience of CLBP among older pain clinic patients, and procedures pertaining to recruitment, data collection, and data analysis are thoroughly detailed elsewhere (see Stensland & Sanders, Under review). Briefly, the aim of this investigation was to develop an understanding of what living with CLBP is like for older adults. To examine this lived experience, researchers employed van Manen’s (1990, 2014) Phenomenology of Practice method. A total of 21 participants took part in the study, all of which whom met the sample inclusion criteria: 65 years of age or older, current patient at a pain clinic, self-reported duration of CLBP for at least 3 months, CLBP is primary pain complaint, community-dwelling, cognitively intact, and English-speaking. Recruitment occurred over a 3-month period during which the first author recruited participants in three ways: (a) flyer recruitment at five pain clinics (8 participants); (b) in-person recruitment at two of the pain clinics (7 participants); and (c) university mass e-mail system (6 participants). Participants were given an informational study flyer while at a pain clinic appointment and either instructed to contact the researcher if interested or were invited to speak in-person with the researcher when the researcher was on-site. The mass e-mail was sent to all university retires, faculty, and staff and specified individuals must be a pain clinic patient with CLBP; the other eligibility criteria were later verified. One-on-one, semistructured in-depth interviews were the primary form of data collection, which were audio-recorded and transcribed verbatim. All interviews were conducted in-person and by the first author, who is a Caucasian female and was 26 years of age at the time of data collection. All but three interviews were conducted in-home. Interviews ranged in duration from 30 to 109 min, with a median length of 61 min. Two participants completed two interviews, because they either appeared to be fatiguing (e.g., less focused answering of questions) or were still fully sharing at the time the interview concluded. An interview guide was used to prevent completion of unfocused interviewing (see Supplementary Appendix), though the questions were open-ended and flexible, allowing for new ideas to be discussed depending on what participants shared. Excluding the subtheme “hurting slowly, aging quickly” in which the experience of time was specifically inquired about, participants were not explicitly questioned about any of the other subthemes. The first author line-by-line coded all transcripts to conduct thematic analysis and identify meaning units in the data. During this process, the authors met frequently to jointly review the coding, discuss the meaning of the themes, and achieve a consensus in regard to final thematic structure. Seven essential themes ultimately emerged as capturing the essential structure of the CLBP experience among participants, of which one, “Not so golden after all,” is presented herein. This study received university IRB approval. Results Participants (n = 21) were all community-dwelling and ranged in age from 66 to 83. Participants had lived with chronic, nonmalignant low back pain for an average of 19 years, with a range of three to 50 years of back pain, and all participants were pain clinic patients. Thirteen female and eight male individuals comprised the sample, all which were Caucasian and non-Latino. While five participants were either divorced, widowed, or single, the remaining participants were married or in a domestic partnership. Only four participants were living alone at the time of the study. Regarding participants’ educational attainment, all but five held at least an Associate’s degree. The full demographic, pain, and disease characteristics of the sample are described in detail elsewhere (see Stensland & Sanders, Under review). Participants’ accounts of their experience of living with CLBP in older adulthood highlight the complexities of being old and chronically in pain at the same time. Specifically, findings illustrate several intersections of growing older and having CLBP, including having additional health problems or needs beyond the back pain, experiencing pain as highlighting their age in an unfavorable way or a source of stigma, and how individuals’ independence is threatened, such that they begin to fear nursing home admission and being a burden on loved ones. Participants discussed how back pain disrupts retirement and the “illusion” of the Golden Years. Participants not represented in a given theme were not in opposition to the finding of that theme; rather they did not speak on that particular theme; unrepresented participants varied from theme to theme. Five subthemes emerged reflecting how CLBP makes the aging process painful in more ways than just the back pain itself. Falling Apart (n = 19) Participants in this study discussed feeling burdened and overwhelmed by comorbid health problems they were living with in addition to their unrelenting CLBP. When participants discussed other coexisting health problems, they used phrases such as, “falling part,” “a mess,” “broke,” and “out of control.” In general, they described feeling overwhelmed and feeling like their bodies were “giving out” on them. One issue that emerged from participant experiencing multiple health problems in addition to the CLBP was the uncertainty surrounding symptoms. For example, one man discussed how bad his legs would ache after walking a considerable distance, yet he knew the soreness could be the result of either his CLBP (referred pain) or his peripheral artery disease/poor circulation. This uncertainty was experienced as confusing and unsettling. Another man was uncertain if his poor balance was tied to his CLBP or Meniere’s disease. One woman offered a particularly illustrative account of attempting to walk up a set of stairs at an outdoor park and becoming incapable of moving either down or up the steps: That was the straw that broke the camel’s back because I thought, ‘What in the hell?’ And because I’d had the pains and stuff going down the legs and stuff before but never to the point where I couldn’t move and I couldn’t lift the leg so that you’d go down the steps or up, and it’s like, ‘Do I have something wrong? Am I having a stroke or…?’...I was worried because I’d had the heart problems. Was there something happening because of my heart? For this woman, this incident was experienced not only as uncertainty, but also a sense of terror, as she had no insight into her sudden incapacitation. Given her previous heart problems and years of CLBP, this incident left her feeling like the camel whose back had been broken by the proverbial straw. This common saying is indicative in and of itself in regard to illuminating how participants experience CLBP and comorbidities—carrying a heavy burden and feeling either on the verge of breaking or already broken. Five participants reported having diabetes in addition to their CLBP, and this combination in particular was experienced as especially troubling. Instead of having one major problem to constantly monitor and manage, diabetes and the accompanying blood sugar testing introduced an excessive need to cater to one’s body. Participants discussed feeling this as an overwhelming mixture of unhealthiness versus several distinct health problems. One woman with diabetes likened her experienced of having multiple comorbid health problems to melted ice cream. She stated: If you have Neapolitan ice cream and, say, the back pain is chocolate, the diabetes is the vanilla, and the knee pain or depression is the other, you stir them all together. Now take one out. Uh, you can’t really do it. This quote illustrates how participants related to their numerous health problems—a scrambled combination of unwanted conditions seemingly too daunting to address one at a time. One woman, who was insulin-dependent, echoed this sentiment when she described being unable to decipher if her unsteadiness was attributable to her CLBP or her diabetes. She stated: I wear this monitor that tells my insulin pump what my blood sugars are all throughout the day. I always have to be looking to see ‘Okay, I’m okay’ because I can’t feel it. The only way I can feel is I start getting clumsy. Okay. Is that because of my back or is that because of diabetes? One way in which participants discussed feeling like they were falling apart was the sheer quantity of health problems and corresponding procedures they were managing. One woman sadly reflected upon all of the pain and surgeries she had endured and noted she was now left to deal with the aftermath of all the pain. So I finally left that pain clinic and got hooked up with rheumatology at the university and I do have rheumatoid arthritis as well as degenerative arthritis so I’ve had loads of surgeries. I’ve had both knees replaced, both shoulders replaced, my hip replaced, back surgery, and then last September I fell in that bedroom and it shattered my lower humerus on the left side so I’ve had two plates and screws put in. Some participants noted when recovering from procedures they underwent for health problems other than CLBP, they would be forced to lie in bed for extended periods of time and avoid exercise during the recovery period, which introduced stiffness and increased pain in their backs. As such, having CLBP and other health problems simultaneously often left participants feeling broken and overwhelmed. Pain Stigmatizes Aging (n = 19) Participants saw their CLBP as stigmatizing or embarrassing and particularly representative of aging. Specifically, when discussing how back pain made them walk, act, and appear in certain ways, participants often cited disparaging clichés about older adults to describe either how they felt with the pain or what they believed others thought about them. Phrases used by participants include the following: “poor little old lady,” “stogie old folks,” “crotchety,” and “senile”. One of the more dominant features of this subtheme was how participants experienced the use of assistive devices as stigmatizing. When participants’ back pain had disabled them to the point of not being able to safely or comfortably walk, many had reluctantly resorted to using a cane, which they generally felt made them look older and be treated differently by others. For example, one woman noted using her cane in public prompted others to treat her like she had diminished cognitive ability. She also indicated she did not want her grandchildren to view her as old or boring. She stated: When you’re in the store, they’ll go, ‘okay, honey’, you know, cuz you’re getting older, and they—which is okay, but they address you like you’re senile. So, you know I didn’t want a cane. And I didn’t want my grandchildren to think—so I said, well, this is just my walking stick. This woman had actually begun to call her cane a “walking stick” as opposed to a “cane,” as she felt this removed some of the ageist stigma surrounding its use. Another woman needed a back brace due to her pain. She explained that when she would be going to an event or would be around many people, she would attempt to hide the back brace under several large shirts, as she felt stigmatized by having to wear it. When the researcher encouraged her to elaborate on her attempts to keep the back brace hidden, she stated: It does [matter] a little bit. Depends on who’s around. My family basically knows that I have it [back brace] and wear it. Um, I recently changed churches. And this year, I helped with a big dinner preparation, and it was kind of like, ‘oh, do I try to get by without wearing it?’ That pride thing, you know, how much are they going to sympathize and feel sorry for you and, ‘Oh, you can’t do that.’... It has a little stigma. As this woman explained, the visibility of a back brace meant that others would feel pity for her, which was stigmatizing. Several other participants echoed this sentiment of wanting to avoid others’ pity, with one woman resentfully stating, “Sorry I am not ready to be a little old lady...I don’t do helpless!” While participants desired to be and appear to be capable, living with CLBP often meant feeling stigma and unwanted pity from others. Similarly, one woman told a story about her experience of applying for social security disability benefits, wherein the staff told her she appeared visibly disabled. The labeling, absolutely. I just didn’t appreciate the fact that I obviously looked disabled and I wasn’t even 60 years old yet…And the connotation of that is - at least for me, was a negative thing. I don’t look down on people who are. You know, I don’t have negative thoughts about people who are in wheelchairs or with walkers or canes ... I don’t look down on them at all, but I just personally didn’t want to be in that category. This woman’s use of words like “labeling” and “category” is indicative of the extent to which participants experienced their CLBP as a source of stigmatization. Hurting Slowly, Aging Quickly (n = 19) Participants discussed the way in which they subjectively experienced the flow of time in relation to their pain. Interestingly, much of their discussion about time passing included discussion about how their older age played a role in experienced time. Generally, participants felt that in times of more severe pain intensity or on especially “bad days,” time seemed to slow down. By contrast, participants felt that being old or being retired had sped up the rate at which time seemed to pass for them. Thus, “hurting slowly, aging quickly” reflects a paradox that emerged whereby participants felt conflicting senses of time as a feature of their CLBP experience. Perhaps the most elaborate, evocative description of the “hurting slowly, aging quickly” paradox was provided by a woman who informed she had done extensive reading about how memories segment time in humans’ minds. She explained the following to the researcher: When you’re not as busy when you get older, there’s not as many memories. You know, your memories from here to here are a lot longer [holds hands far apart] than your memory from here to here to here to [holds hands close together] – and so that makes the time seem, ‘Oh, my gosh. It’s already this!’…When you’re having the pain and you’ve got those memories that kind of makes it drag a little. Does that make sense to you? It’s like, ‘Ugh, this so hurts. This so hurts. You know, I just want to be over this,’ and so it’s not something you can block out, so it’s a memory…, so that slows time down the same way as when you have things that are creating memories when you’re younger. For this woman, old age meant less engagement in life and, thus, less memories of activities. Where there were no memories to judge the time by, time sped forward. Pain served as a memory since it could not be ignored, thereby slowing time down. One man who had lived with CLBP for eight years also discussed this paradox in a way that not only effectively illustrates the inconsistency, but also demonstrates how old age and retirement were often weaved into descriptions of lived time that were originally directed at pain alone, not age. He stated: It’s kind of hard to tell whether it’s back pain or aging that is the issue, but I think time can slow up, and it also seems like there’s less time in the day, and I often wonder how on earth did I ever have time to do that and have a job or, you know, that type of thing… On the other hand, it seems odd because being retired is like, you know, you should have all the time in the world you think, but, I guess, you do things at a slower pace. It depends on the moment. I mean, in general, days seem shorter than they used to be ‘cause I get less done in the course of the day. Many participants reflected upon the period of time before they entered retirement and asked themselves during the interviews how they ever accomplished all that they did in one day, as these days they felt the days came and passed rapidly. Coupled with having less responsibilities, they discussed having more unstructured time, to the point that some would periodically lose track of what day of the week it was. In this sense, participants experienced time as passing by quickly though they were moving slowly. This left participants feeling unproductive. One woman noted the speed at which time seemed to pass increased with age, yet she slowed down. “The only thing, it takes me so long to get anything done. It seems like three times longer than it would for someone else to just go in and do it. Sometimes I feel like I’m not getting much accomplished.” Interestingly, one woman actually described older adults’ propensity to experience time rapidly as advantageous when suffering from CLBP. She explained, “there’s one little advantage to being older when you’re in pain in that I know we all have a 24-hr day, but my 24-hr clock runs faster than yours...so my days of pain are not as long as they could be. Pain Threatens Independence (n = 17) The issue of independence was a critical aspect of the CLBP experience. Specifically, their back pain and corresponding disability were experienced as a threat to remaining independent, which was meaningful and important to participants. They wanted to continue enjoying cherished activities, living in their personal residences, and taking care of themselves, yet their back pain jeopardized these acts. As one woman noted: You worry about getting more and more incapacitated. And that makes you feel sad. Because we all of us – we all want to be independent. And if you have pain, you can see that path is going to get more and more narrow. And that’s the part for me that’s hard because I always felt my life was very full in the past because I could do things. And yeah I had pain, but I could still do them. But I don’t feel that way anymore. I feel like ‘Nah, I just think I won’t do it.’ The picture of a broad path becoming gradually more narrow embodies how participants experienced their painful backs—a threat that would increasingly diminish their independence until there was nothing left they could still do. Likewise, another woman expressed concerns over being confined and noted: If that [CLBP] is so severe that I couldn’t use my stroller anymore or something like that then that’s very threatening to me to be confined. I’ve got a lovely place to sit all my life and live, but I still wanna be out and about. One of the recurring trends for this subtheme was participants’ desire to not be a burden on loved ones. One woman adamantly stated the following multiple times during her interview: Well, I don’t want to be dependent on anybody. I don’t want to be dependent, you know. And I think most people my age and older do not want to be dependent on their kids. I don’t want to be a burden. Participants attributed their dwindling independence as the reason for them being a “third wheel,” “disruption,” and “inconvenience to people”. Participants felt their back pain rendered them increasingly reliant on others; relying on others meant having to ask for help, which they felt damaged their pride and drew attention to their inabilities. One woman stated, “It makes you feel embarrassed because a lot of times I have to have <husband> get things down from the shelf for me, and it’s like – I hate to ask people to do things for me. I wasn’t brought up that way.” The issue that these community-dwelling participants felt most strongly about in regard to threatened independence, however, was the fear surrounding potential nursing home admission. Participants described nursing homes as dreadful places they wished to avoid despite their CLBP. One man reflected on his 96-year-old mother living in a nursing home at the time of the study and stated, “Oh God, is that me in 20 years? I think it would just be awful.... I don’t want to be in a nursing home. That scares me. They’re nasty places.” Beyond a general aversion, participants worried about not being well taken care of, being bored, and being neglected. Reality of Unrealized Futures (n = 16) Of the 18 participants who were not working at the time of the interviews, 16 discussed how their CLBP had led them to experience their retirement years much differently than how they had previously envisioned this period of life. Though some participants still expressed enjoyment of not having to work every day, they by and large felt disappointment and resentment in that their pain had prevented them from spending time how and where they had initially planned to spend their retirement. The “reality of unrealized futures” means that participants failed to experience the retirement they desired and expected, as one participant blatantly lamented, “My retirement is not what I expected it to be.” Several participants spoke specifically about the transition from employment into retirement and noted how surprisingly difficult this experience was for them. They discussed feeling lonely with their pain, focusing on the pain more, and hurting worse in comparison to when they were still working. One woman vividly described her start of retirement: The first year after I retired, I felt like my body completely fell apart. There was so much pressure that I had to hold it together. When I stopped teaching, all the bands that was holding me together popped like a rubberband. All of a sudden, my back, my knee, anyplace there was arthritis, it [pain] was there. I just I fell apart. That first year I didn’t do much. For this woman, the abrupt freedom of retirement was experienced not as freedom but as the painful “popping of a rubber band.” Another man described a similar experience, as he stated: When you’re at work, you know, I’m focused. There’s a million things going on, you got to think about it so much. Retire, come home, more time to think, probably doesn’t hurt more but I think about it more...when that was over it’s like, ‘Oh my God! I’m totally retired. What am I gonna do?’ All of a sudden, you retired and there’s nothing. It’s like, it’s just me and my aches and pains. Several participants discussed the phrase “golden years” and noted how their experience of having CLBP during retirement was far from the portrait typically painted of older adults enjoying the best time of their lives. One retired woman who had worked as a bartender for many years had the following to say about the golden years: Getting old is hell, pathetic. Golden years? Not golden. It’s just, you know, they say the golden years is the years you’re gonna have a lot of fun. You can do this and that. You could if you weren’t in pain half the time! Everybody I know said, ‘You can’t do near the things that they tell you you’re gonna be able to do in your golden years, because you don’t feel like it.’ That’s the bit about golden years. Others expressed the same sentiment of disenchantment, generally feeling like the golden years is an illusion. One man noted: Everybody talks about the golden years. Well, that’s bullshit, with all the aches and pains you have. I mean, it’s nice being retired, but on the other hand—I don’t know. A person never thinks they’re going to be hurting. When participants discussed the golden years, they typically did a combination of head-shaking, eye-rolling, and shoulder-shrugging, physically illustrating their dissatisfaction. Living with CLBP during one’s retirement period meant the disillusionment of the golden years. Participants discussed disappointment in their inability to do fun activities during their retirement they had anticipated enjoying. One man noted: I used to walk and do all this stuff – pheasant hunt, I love to pheasant hunt, things like that. Playing baseball with my grandkids, I mean I love doing that. That’s what I was hoping for and now, I can’t you know? I can go watch them play baseball but as far as participating, I just can’t do that. I can’t even bend – if I had the glove on and I can’t even bend over and pick up a ball that’s rolling on the ground. As this man’s comment illustrates, participants’ experiences presently in retirement were almost always contrasted to what they had previously envisioned or hoped for. One of the most upsetting aspects of participants’ pain experiences surrounding their retirement was the extent to which past travel plans had not come to fruition. Traveling by airplane was experienced as a stressful, painful, and uncomfortable activity for many participants, and some noted they had actually been ordered by a physician to not fly. Others noted past excursions that they did attempt resulted in a significant uptick in pain severity, dissuading them from attempting other large vacation trips. One woman gave an in-depth account of the drastic difference between what her and her husband had planned for their retirement versus how their retirement had actually unfolded. She explained: It’s not the retirement we had envisioned. We planned to have homes in different places and then the back hit. … So [husband] said, ‘Maybe Hawaii isn’t where we want another house,’ so scratch that, and that was all pretty much because of my back and the pain and the travel… So we decided we just live here the year round and go on little short trips. So that drastically changed that concept we were going to have. We were going to have a home on the east coast, a home in Hawaii, a home here, and we had thought we’d go to Europe for at least a month every year. We haven’t because I was told not to fly because of my back and my legs. So here we are, big change in what we’ve anticipated. Now, [town] is lovely, but it’s not Paris and it’s not London or Venice. Retirement was generally experienced as a painfully disappointing period whereby pain and disability replaced previously envisioned travel adventures and recreational fun. CLBP rendered the golden years an illusion. Discussion and Implications By phenomenologically investigating older pain clinic patients’ CLBP, this study highlighted the complexities of being old and chronically in pain. Findings showed that CLBP destroys dreams for retirement and the future, complicates other age-related health conditions, creates stigma around the aging process, and generates fear for what the “golden years” will look like. Taken cumulatively, CLBP may be understood as the source of many losses, creating an intense grief experience for older adults and shaping how they see growing old. The results of this study confirm that chronic pain creates a variety of losses (Gatchel, Adams, Polatin, & Kishino, 2002; Worzer, Kishino, & Gatchel, 2009). As Sofaer-Bennett and colleagues (2007) found, the older adults in our study experienced significant loss by way of decreased physical functioning, resulting in restricted recreational and leisure time activities. This, in turn, drastically impacted the quality of their retirements, leading to disappointment, disillusionment, and a longing for prepain functionality. Individuals in this study had been employed for decades and had long envisioned a rewarding, fulfilling retirement period, and the reality of their CLBP led to grieving this unrealized dream. Their current situation was not as they had envisioned and hoped for, and narratives revealed a degree of anticipatory grief, whereby they feared the future and what further decline and losses it would entail. This is a major distinction from younger individuals with CLBP, in which there tends to be a “... perception of a meaningful future. Participants talked about the possibility of working again or an improved social life” (Snelgrove, Edwards, S., & Liossi, 2013, p. 131). Research on younger adults with chronic pain tends to feature the chronic pain itself as the one and only pertinent health concern. By contrast, as illustrated in this study, CLBP among older adults must be viewed in the larger context of the likely multiple comorbid health conditions present. Having multiple chronic conditions in older adulthood is increasingly prevalent (Freid, Bernstein, & Bush, 2012). Though Higgins, Madjar, & Walton (2004) note multiple sources of pain and some comorbid conditions among participants, the interplay between the two was not described. Among the phenomenological studies on younger and middle-aged adults specifically with CLBP, little is mentioned with regard to comorbid conditions and their role in the CLBP experience, focusing instead on the CLBP exclusively. Thus, this study provides insight into how the experiences of older CLBP sufferers diverge from their younger counterparts. In this sense, late-life CLBP is not just a loss of a pain-free existence, it is also an exacerbation of lost global health. Findings highlight the grief-inducing nature of CLBP in older adulthood. Bereavement theories, particularly ambiguous loss theory (Boss & Couden, 2002) may provide clinicians with a framework for understanding older pain clinic patients’ experiences of stigma, invisible suffering, and gradual loss. Our findings relating to stigma support and expand previous knowledge about the stigmatization of individuals with chronic pain (Cohen, Quintner, Buchanan, Nielsen, & Guy, 2011; Holloway, Sofaer-Bennett, & Walker, 2007). Previous phenomenological findings related to CLBP stigmatization include facing disbelief by others (Holloway et al., 2007), malingering for reasons of financial benefit (Walker, Holloway, & Sofaer, 1999), and the concept of a “pain career” (Holloway, Sofaer, & Walker, 2000). This study offers an interesting perspective on pain related stigma, depicting older adults’ stigma as tied largely specifically to their age and frailty. They explained being treated “like they were senile,” detecting stigma surrounding use of a cane, and being labeled disabled. While Parsons, Godfrey, and Jester (2009) noted that older adults with osteoarthritis of the hip and knee thought other people viewed them negatively, the negativity involved being perceived as unable to manage their pain, not ageist stigma. Thus, findings point to age-specific experiences of stigma, in addition to being questioned and invalidated by health care providers. It is important to note, too, that many individuals incorrectly believe chronic pain is a normal aspect of aging, including older adults themselves (e.g., Sanders, Donovan, & Dieppe, 2002), which is some ways may reflect internalized stereotyping. As CLBP forced the older adults to let go of dreams and plans, the stigma of debility was further reinforced and embodied into how they viewed themselves and how they felt society judged them. Several limitations of the study may be noted, which are also detailed elsewhere (Stensland & Sanders, Under review). First, the use of nonprobability convenience sampling prevents large-scale generalizability to the larger older pain clinic patient population. Second, the sample was racially and ethnically lacking in diversity, which hinders our ability to gain insight into the experiences of diverse older adults, who tend to fare worse on pain outcomes in comparison to Caucasian individuals. Third, the immersion of the researcher in interview approaches involves inherent variations from interview to interview with regard to probing, questioning, and general interacting, which has the potential to influence to some degree participant responses, nonetheless generating powerful, deep narratives as intended. Fourth, interpretive methodologies such as phenomenology strongly emphasize the consciousness, thereby operating under the assumption that participants have sufficient insight into their thoughts, speech, and action. The phenomenological interview arguably results in little insight into unconscious thought processes and internalized cultural norms that likely operate in participants’ experiences. This study has important implications for how health care providers and allied professions approach pain management for older adults with CLBP. First, as van Manen (2014) notes, the phenomenological understanding achieved by this study allows practitioners to “... nurture a measure of thoughtfulness and tact in the practice of our professions…” (van Manen, 2014, p. 31). Professionals must remain always cognizant of the complexity introduced by having chronic pain on top of multiple chronic conditions, highlighting the need for exceptionally coordinated care across specialties and between providers. Second, professionals such as social workers, psychologists, and mental health counselors should strive to more systematically assess grief reactions and design psychosocial treatments to address pain-related losses. Third, the fact that participants felt misunderstood and stigmatized emphasizes the importance of unconditional positive regard in clinical contexts. Lastly, given its treatment resistant nature, helping older adults with CLBP set realistic expectations of their aging process is essential, particularly given the monumental impact it has on retirement and late life functioning. Supplementary Material Supplementary data are available at The Gerontologist online. Funding This work was supported by the Ballard Seashore Dissertation Fellowship from the University of Iowa Graduate College. Conflict of Interest None reported. References Administration on Aging . ( 2014 ). A profile of older Americans: 2014 . 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Not So Golden After All: The Complexities of Chronic Low Back Pain in Older Adulthood

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© The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.
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Abstract

Abstract Background and Objectives The study objective was to understand how Chronic low back pain (CLBP) impacts key aging concepts such as retirement, housing, health, and independence. Research Design and Methods Twenty-one pain clinic patients (66–83 years old) with CLBP engaged in 23 in-depth semistructured interviews, which were audio-recorded and transcribed verbatim. Guided by van Manen’s phenomenological method, researchers used line-by-line thematic coding to analyze data through an iterative process. Results Participants’ accounts illustrate the interplay between aging and living with CLBP. Under the larger theme “Not so golden after all,” results are reflected in five subthemes: (a) Falling apart; (b) Pain stigmatizes aging; (c) Hurting slowly, aging quickly; (d) Pain threatens independence; (e) The reality of unrealized futures. Discussion and Implications This study improves our understanding of how CLBP complicates growing older with regard to tarnished retirements and stigmatization. Findings highlight the importance of coordinated care and recognition of pain-related loss. Chronic illness, Pain management, Phenomenology, Retirement Background and Objectives The population of older adults is increasing both nationally and globally (Administration on Aging, 2014; He, Goodkind, & Kowal, 2016). In the United States, individuals aged 65 years and older increased by 25% to 44.7 million between the years of 2003–2013, and growth estimates suggest that this will more than double by the year 2060 (Administration on Aging, 2014). Chronic pain is exceptionally common among older adults (Molton & Terrill, 2014), and has been shown to increase with age (Donald & Foy, 2004). Chronic low back pain (CLBP) in particular is the leading type of musculoskeletal pain (Docking et al., 2011; Patel, Guralnik, Dansie, & Turk, 2013), and often persists into extreme old age (Hartvigsen & Christensen, 2008). In comparison to pain-free older adults, those with CLBP have more physical disability and poorer overall mental health (Rudy, Weiner, Lieber, Slaboda, & Boston, 2007). Age is one of the most critical factors associated with chronic pain. Compared to their younger counterparts, older adults suffer more from CLBP, seek less care (Knauer, Freburger, & Carey, 2010), and are more susceptible to poor pain outcomes, including disability and mortality (Gagliese, 2009). Older adults face numerous barriers in accessing chronic pain care, such as poor communication with health care providers, transportation problems, and psychosocial limitations (Park, Hirz, Manotas, & Hooyman, 2013). It is established that older adults often fail to receive adequate chronic pain treatment (e.g., Chodosh et al., 2004; McNeill, Sherwood, & Starck, 2004). Harkins (2005) proposed two reasons for this inadequacy: (a) in regards to age, pain is viewed as a secondary symptom of various comorbid conditions, with emphasis placed more on treatment of the pathology versus the pain; (b) pain may be misunderstood as a “normal” feature of aging, thus, ignored by health care providers. Though older adults are largely neglected from pain research (Gagliese, 2009; Melding, 1991), a body of qualitative work on chronic pain in this population is amassing. While some studies examined “successful aging” (Collis & Waterfield, 2015) and perceived good health (Richardson, Grime, & Ong, 2014) despite living with chronic pain in old age, most qualitative studies have documented the negative consequences of pain. Research indicates older adults living with chronic pain experience considerable impairment with regard to both their physical functioning (Wilcox et al., 2006) and social activity/engagement (Sofaer-Bennett et al., 2007). Furthermore, issues such as grief and loss (Gran, Festvåg, & Landmark, 2010), perceived vulnerability (Manoochehri, Shirazi, Tafreshi, & Zayeri, 2014), and purposelessness in life (Gran et al., 2010) have been identified. In regard to older adults’ pain, Gran and colleagues (2010) noted, “The consequences of suffering was experienced in the feeling of personal loss of integrity and was expressed as resignation, loss of initiative, isolation, insecurity, the feeling of being a burden, sadness, and being closed into own pain until death” (p. 29). Few qualitative studies on older adults with CLBP have been identified overall, and most pertain largely to treatment-related issues such as preferences, reactions to different approaches, and reasons for not seeking treatment (e.g., Edwards et al., 2015; Lyons et al., 2013; Morone, Lynch, Greco, Tindle, & Weiner, 2008; Makris, 2015; Teh et al., 2009). More recent studies, however, have poignantly illustrated the systemic implications (Stensland & Sanders, Under review) and physical, social, and emotional impacts (Makris et al., 2016) of CLBP in older adulthood. Additionally, (see Stensland & Sanders, Under review) reported how older pain clinic patients with CLBP describe and relate to their CLBP. While these studies offer valuable insight into the broad experience of CLBP among older adults, the present study seeks to expand upon this knowledge by shedding light specifically on key aging concepts such as retirement, housing, health, and independence in the context of CLBP. Examining CLBP through an aging lens contributes a needed perspective, as it uncovers issues unique to a population which suffers greatly from this condition yet remains largely understudied. Research Design and Methods This study is part of a larger study conducted in a Midwestern college town which examined the experience of CLBP among older pain clinic patients, and procedures pertaining to recruitment, data collection, and data analysis are thoroughly detailed elsewhere (see Stensland & Sanders, Under review). Briefly, the aim of this investigation was to develop an understanding of what living with CLBP is like for older adults. To examine this lived experience, researchers employed van Manen’s (1990, 2014) Phenomenology of Practice method. A total of 21 participants took part in the study, all of which whom met the sample inclusion criteria: 65 years of age or older, current patient at a pain clinic, self-reported duration of CLBP for at least 3 months, CLBP is primary pain complaint, community-dwelling, cognitively intact, and English-speaking. Recruitment occurred over a 3-month period during which the first author recruited participants in three ways: (a) flyer recruitment at five pain clinics (8 participants); (b) in-person recruitment at two of the pain clinics (7 participants); and (c) university mass e-mail system (6 participants). Participants were given an informational study flyer while at a pain clinic appointment and either instructed to contact the researcher if interested or were invited to speak in-person with the researcher when the researcher was on-site. The mass e-mail was sent to all university retires, faculty, and staff and specified individuals must be a pain clinic patient with CLBP; the other eligibility criteria were later verified. One-on-one, semistructured in-depth interviews were the primary form of data collection, which were audio-recorded and transcribed verbatim. All interviews were conducted in-person and by the first author, who is a Caucasian female and was 26 years of age at the time of data collection. All but three interviews were conducted in-home. Interviews ranged in duration from 30 to 109 min, with a median length of 61 min. Two participants completed two interviews, because they either appeared to be fatiguing (e.g., less focused answering of questions) or were still fully sharing at the time the interview concluded. An interview guide was used to prevent completion of unfocused interviewing (see Supplementary Appendix), though the questions were open-ended and flexible, allowing for new ideas to be discussed depending on what participants shared. Excluding the subtheme “hurting slowly, aging quickly” in which the experience of time was specifically inquired about, participants were not explicitly questioned about any of the other subthemes. The first author line-by-line coded all transcripts to conduct thematic analysis and identify meaning units in the data. During this process, the authors met frequently to jointly review the coding, discuss the meaning of the themes, and achieve a consensus in regard to final thematic structure. Seven essential themes ultimately emerged as capturing the essential structure of the CLBP experience among participants, of which one, “Not so golden after all,” is presented herein. This study received university IRB approval. Results Participants (n = 21) were all community-dwelling and ranged in age from 66 to 83. Participants had lived with chronic, nonmalignant low back pain for an average of 19 years, with a range of three to 50 years of back pain, and all participants were pain clinic patients. Thirteen female and eight male individuals comprised the sample, all which were Caucasian and non-Latino. While five participants were either divorced, widowed, or single, the remaining participants were married or in a domestic partnership. Only four participants were living alone at the time of the study. Regarding participants’ educational attainment, all but five held at least an Associate’s degree. The full demographic, pain, and disease characteristics of the sample are described in detail elsewhere (see Stensland & Sanders, Under review). Participants’ accounts of their experience of living with CLBP in older adulthood highlight the complexities of being old and chronically in pain at the same time. Specifically, findings illustrate several intersections of growing older and having CLBP, including having additional health problems or needs beyond the back pain, experiencing pain as highlighting their age in an unfavorable way or a source of stigma, and how individuals’ independence is threatened, such that they begin to fear nursing home admission and being a burden on loved ones. Participants discussed how back pain disrupts retirement and the “illusion” of the Golden Years. Participants not represented in a given theme were not in opposition to the finding of that theme; rather they did not speak on that particular theme; unrepresented participants varied from theme to theme. Five subthemes emerged reflecting how CLBP makes the aging process painful in more ways than just the back pain itself. Falling Apart (n = 19) Participants in this study discussed feeling burdened and overwhelmed by comorbid health problems they were living with in addition to their unrelenting CLBP. When participants discussed other coexisting health problems, they used phrases such as, “falling part,” “a mess,” “broke,” and “out of control.” In general, they described feeling overwhelmed and feeling like their bodies were “giving out” on them. One issue that emerged from participant experiencing multiple health problems in addition to the CLBP was the uncertainty surrounding symptoms. For example, one man discussed how bad his legs would ache after walking a considerable distance, yet he knew the soreness could be the result of either his CLBP (referred pain) or his peripheral artery disease/poor circulation. This uncertainty was experienced as confusing and unsettling. Another man was uncertain if his poor balance was tied to his CLBP or Meniere’s disease. One woman offered a particularly illustrative account of attempting to walk up a set of stairs at an outdoor park and becoming incapable of moving either down or up the steps: That was the straw that broke the camel’s back because I thought, ‘What in the hell?’ And because I’d had the pains and stuff going down the legs and stuff before but never to the point where I couldn’t move and I couldn’t lift the leg so that you’d go down the steps or up, and it’s like, ‘Do I have something wrong? Am I having a stroke or…?’...I was worried because I’d had the heart problems. Was there something happening because of my heart? For this woman, this incident was experienced not only as uncertainty, but also a sense of terror, as she had no insight into her sudden incapacitation. Given her previous heart problems and years of CLBP, this incident left her feeling like the camel whose back had been broken by the proverbial straw. This common saying is indicative in and of itself in regard to illuminating how participants experience CLBP and comorbidities—carrying a heavy burden and feeling either on the verge of breaking or already broken. Five participants reported having diabetes in addition to their CLBP, and this combination in particular was experienced as especially troubling. Instead of having one major problem to constantly monitor and manage, diabetes and the accompanying blood sugar testing introduced an excessive need to cater to one’s body. Participants discussed feeling this as an overwhelming mixture of unhealthiness versus several distinct health problems. One woman with diabetes likened her experienced of having multiple comorbid health problems to melted ice cream. She stated: If you have Neapolitan ice cream and, say, the back pain is chocolate, the diabetes is the vanilla, and the knee pain or depression is the other, you stir them all together. Now take one out. Uh, you can’t really do it. This quote illustrates how participants related to their numerous health problems—a scrambled combination of unwanted conditions seemingly too daunting to address one at a time. One woman, who was insulin-dependent, echoed this sentiment when she described being unable to decipher if her unsteadiness was attributable to her CLBP or her diabetes. She stated: I wear this monitor that tells my insulin pump what my blood sugars are all throughout the day. I always have to be looking to see ‘Okay, I’m okay’ because I can’t feel it. The only way I can feel is I start getting clumsy. Okay. Is that because of my back or is that because of diabetes? One way in which participants discussed feeling like they were falling apart was the sheer quantity of health problems and corresponding procedures they were managing. One woman sadly reflected upon all of the pain and surgeries she had endured and noted she was now left to deal with the aftermath of all the pain. So I finally left that pain clinic and got hooked up with rheumatology at the university and I do have rheumatoid arthritis as well as degenerative arthritis so I’ve had loads of surgeries. I’ve had both knees replaced, both shoulders replaced, my hip replaced, back surgery, and then last September I fell in that bedroom and it shattered my lower humerus on the left side so I’ve had two plates and screws put in. Some participants noted when recovering from procedures they underwent for health problems other than CLBP, they would be forced to lie in bed for extended periods of time and avoid exercise during the recovery period, which introduced stiffness and increased pain in their backs. As such, having CLBP and other health problems simultaneously often left participants feeling broken and overwhelmed. Pain Stigmatizes Aging (n = 19) Participants saw their CLBP as stigmatizing or embarrassing and particularly representative of aging. Specifically, when discussing how back pain made them walk, act, and appear in certain ways, participants often cited disparaging clichés about older adults to describe either how they felt with the pain or what they believed others thought about them. Phrases used by participants include the following: “poor little old lady,” “stogie old folks,” “crotchety,” and “senile”. One of the more dominant features of this subtheme was how participants experienced the use of assistive devices as stigmatizing. When participants’ back pain had disabled them to the point of not being able to safely or comfortably walk, many had reluctantly resorted to using a cane, which they generally felt made them look older and be treated differently by others. For example, one woman noted using her cane in public prompted others to treat her like she had diminished cognitive ability. She also indicated she did not want her grandchildren to view her as old or boring. She stated: When you’re in the store, they’ll go, ‘okay, honey’, you know, cuz you’re getting older, and they—which is okay, but they address you like you’re senile. So, you know I didn’t want a cane. And I didn’t want my grandchildren to think—so I said, well, this is just my walking stick. This woman had actually begun to call her cane a “walking stick” as opposed to a “cane,” as she felt this removed some of the ageist stigma surrounding its use. Another woman needed a back brace due to her pain. She explained that when she would be going to an event or would be around many people, she would attempt to hide the back brace under several large shirts, as she felt stigmatized by having to wear it. When the researcher encouraged her to elaborate on her attempts to keep the back brace hidden, she stated: It does [matter] a little bit. Depends on who’s around. My family basically knows that I have it [back brace] and wear it. Um, I recently changed churches. And this year, I helped with a big dinner preparation, and it was kind of like, ‘oh, do I try to get by without wearing it?’ That pride thing, you know, how much are they going to sympathize and feel sorry for you and, ‘Oh, you can’t do that.’... It has a little stigma. As this woman explained, the visibility of a back brace meant that others would feel pity for her, which was stigmatizing. Several other participants echoed this sentiment of wanting to avoid others’ pity, with one woman resentfully stating, “Sorry I am not ready to be a little old lady...I don’t do helpless!” While participants desired to be and appear to be capable, living with CLBP often meant feeling stigma and unwanted pity from others. Similarly, one woman told a story about her experience of applying for social security disability benefits, wherein the staff told her she appeared visibly disabled. The labeling, absolutely. I just didn’t appreciate the fact that I obviously looked disabled and I wasn’t even 60 years old yet…And the connotation of that is - at least for me, was a negative thing. I don’t look down on people who are. You know, I don’t have negative thoughts about people who are in wheelchairs or with walkers or canes ... I don’t look down on them at all, but I just personally didn’t want to be in that category. This woman’s use of words like “labeling” and “category” is indicative of the extent to which participants experienced their CLBP as a source of stigmatization. Hurting Slowly, Aging Quickly (n = 19) Participants discussed the way in which they subjectively experienced the flow of time in relation to their pain. Interestingly, much of their discussion about time passing included discussion about how their older age played a role in experienced time. Generally, participants felt that in times of more severe pain intensity or on especially “bad days,” time seemed to slow down. By contrast, participants felt that being old or being retired had sped up the rate at which time seemed to pass for them. Thus, “hurting slowly, aging quickly” reflects a paradox that emerged whereby participants felt conflicting senses of time as a feature of their CLBP experience. Perhaps the most elaborate, evocative description of the “hurting slowly, aging quickly” paradox was provided by a woman who informed she had done extensive reading about how memories segment time in humans’ minds. She explained the following to the researcher: When you’re not as busy when you get older, there’s not as many memories. You know, your memories from here to here are a lot longer [holds hands far apart] than your memory from here to here to here to [holds hands close together] – and so that makes the time seem, ‘Oh, my gosh. It’s already this!’…When you’re having the pain and you’ve got those memories that kind of makes it drag a little. Does that make sense to you? It’s like, ‘Ugh, this so hurts. This so hurts. You know, I just want to be over this,’ and so it’s not something you can block out, so it’s a memory…, so that slows time down the same way as when you have things that are creating memories when you’re younger. For this woman, old age meant less engagement in life and, thus, less memories of activities. Where there were no memories to judge the time by, time sped forward. Pain served as a memory since it could not be ignored, thereby slowing time down. One man who had lived with CLBP for eight years also discussed this paradox in a way that not only effectively illustrates the inconsistency, but also demonstrates how old age and retirement were often weaved into descriptions of lived time that were originally directed at pain alone, not age. He stated: It’s kind of hard to tell whether it’s back pain or aging that is the issue, but I think time can slow up, and it also seems like there’s less time in the day, and I often wonder how on earth did I ever have time to do that and have a job or, you know, that type of thing… On the other hand, it seems odd because being retired is like, you know, you should have all the time in the world you think, but, I guess, you do things at a slower pace. It depends on the moment. I mean, in general, days seem shorter than they used to be ‘cause I get less done in the course of the day. Many participants reflected upon the period of time before they entered retirement and asked themselves during the interviews how they ever accomplished all that they did in one day, as these days they felt the days came and passed rapidly. Coupled with having less responsibilities, they discussed having more unstructured time, to the point that some would periodically lose track of what day of the week it was. In this sense, participants experienced time as passing by quickly though they were moving slowly. This left participants feeling unproductive. One woman noted the speed at which time seemed to pass increased with age, yet she slowed down. “The only thing, it takes me so long to get anything done. It seems like three times longer than it would for someone else to just go in and do it. Sometimes I feel like I’m not getting much accomplished.” Interestingly, one woman actually described older adults’ propensity to experience time rapidly as advantageous when suffering from CLBP. She explained, “there’s one little advantage to being older when you’re in pain in that I know we all have a 24-hr day, but my 24-hr clock runs faster than yours...so my days of pain are not as long as they could be. Pain Threatens Independence (n = 17) The issue of independence was a critical aspect of the CLBP experience. Specifically, their back pain and corresponding disability were experienced as a threat to remaining independent, which was meaningful and important to participants. They wanted to continue enjoying cherished activities, living in their personal residences, and taking care of themselves, yet their back pain jeopardized these acts. As one woman noted: You worry about getting more and more incapacitated. And that makes you feel sad. Because we all of us – we all want to be independent. And if you have pain, you can see that path is going to get more and more narrow. And that’s the part for me that’s hard because I always felt my life was very full in the past because I could do things. And yeah I had pain, but I could still do them. But I don’t feel that way anymore. I feel like ‘Nah, I just think I won’t do it.’ The picture of a broad path becoming gradually more narrow embodies how participants experienced their painful backs—a threat that would increasingly diminish their independence until there was nothing left they could still do. Likewise, another woman expressed concerns over being confined and noted: If that [CLBP] is so severe that I couldn’t use my stroller anymore or something like that then that’s very threatening to me to be confined. I’ve got a lovely place to sit all my life and live, but I still wanna be out and about. One of the recurring trends for this subtheme was participants’ desire to not be a burden on loved ones. One woman adamantly stated the following multiple times during her interview: Well, I don’t want to be dependent on anybody. I don’t want to be dependent, you know. And I think most people my age and older do not want to be dependent on their kids. I don’t want to be a burden. Participants attributed their dwindling independence as the reason for them being a “third wheel,” “disruption,” and “inconvenience to people”. Participants felt their back pain rendered them increasingly reliant on others; relying on others meant having to ask for help, which they felt damaged their pride and drew attention to their inabilities. One woman stated, “It makes you feel embarrassed because a lot of times I have to have <husband> get things down from the shelf for me, and it’s like – I hate to ask people to do things for me. I wasn’t brought up that way.” The issue that these community-dwelling participants felt most strongly about in regard to threatened independence, however, was the fear surrounding potential nursing home admission. Participants described nursing homes as dreadful places they wished to avoid despite their CLBP. One man reflected on his 96-year-old mother living in a nursing home at the time of the study and stated, “Oh God, is that me in 20 years? I think it would just be awful.... I don’t want to be in a nursing home. That scares me. They’re nasty places.” Beyond a general aversion, participants worried about not being well taken care of, being bored, and being neglected. Reality of Unrealized Futures (n = 16) Of the 18 participants who were not working at the time of the interviews, 16 discussed how their CLBP had led them to experience their retirement years much differently than how they had previously envisioned this period of life. Though some participants still expressed enjoyment of not having to work every day, they by and large felt disappointment and resentment in that their pain had prevented them from spending time how and where they had initially planned to spend their retirement. The “reality of unrealized futures” means that participants failed to experience the retirement they desired and expected, as one participant blatantly lamented, “My retirement is not what I expected it to be.” Several participants spoke specifically about the transition from employment into retirement and noted how surprisingly difficult this experience was for them. They discussed feeling lonely with their pain, focusing on the pain more, and hurting worse in comparison to when they were still working. One woman vividly described her start of retirement: The first year after I retired, I felt like my body completely fell apart. There was so much pressure that I had to hold it together. When I stopped teaching, all the bands that was holding me together popped like a rubberband. All of a sudden, my back, my knee, anyplace there was arthritis, it [pain] was there. I just I fell apart. That first year I didn’t do much. For this woman, the abrupt freedom of retirement was experienced not as freedom but as the painful “popping of a rubber band.” Another man described a similar experience, as he stated: When you’re at work, you know, I’m focused. There’s a million things going on, you got to think about it so much. Retire, come home, more time to think, probably doesn’t hurt more but I think about it more...when that was over it’s like, ‘Oh my God! I’m totally retired. What am I gonna do?’ All of a sudden, you retired and there’s nothing. It’s like, it’s just me and my aches and pains. Several participants discussed the phrase “golden years” and noted how their experience of having CLBP during retirement was far from the portrait typically painted of older adults enjoying the best time of their lives. One retired woman who had worked as a bartender for many years had the following to say about the golden years: Getting old is hell, pathetic. Golden years? Not golden. It’s just, you know, they say the golden years is the years you’re gonna have a lot of fun. You can do this and that. You could if you weren’t in pain half the time! Everybody I know said, ‘You can’t do near the things that they tell you you’re gonna be able to do in your golden years, because you don’t feel like it.’ That’s the bit about golden years. Others expressed the same sentiment of disenchantment, generally feeling like the golden years is an illusion. One man noted: Everybody talks about the golden years. Well, that’s bullshit, with all the aches and pains you have. I mean, it’s nice being retired, but on the other hand—I don’t know. A person never thinks they’re going to be hurting. When participants discussed the golden years, they typically did a combination of head-shaking, eye-rolling, and shoulder-shrugging, physically illustrating their dissatisfaction. Living with CLBP during one’s retirement period meant the disillusionment of the golden years. Participants discussed disappointment in their inability to do fun activities during their retirement they had anticipated enjoying. One man noted: I used to walk and do all this stuff – pheasant hunt, I love to pheasant hunt, things like that. Playing baseball with my grandkids, I mean I love doing that. That’s what I was hoping for and now, I can’t you know? I can go watch them play baseball but as far as participating, I just can’t do that. I can’t even bend – if I had the glove on and I can’t even bend over and pick up a ball that’s rolling on the ground. As this man’s comment illustrates, participants’ experiences presently in retirement were almost always contrasted to what they had previously envisioned or hoped for. One of the most upsetting aspects of participants’ pain experiences surrounding their retirement was the extent to which past travel plans had not come to fruition. Traveling by airplane was experienced as a stressful, painful, and uncomfortable activity for many participants, and some noted they had actually been ordered by a physician to not fly. Others noted past excursions that they did attempt resulted in a significant uptick in pain severity, dissuading them from attempting other large vacation trips. One woman gave an in-depth account of the drastic difference between what her and her husband had planned for their retirement versus how their retirement had actually unfolded. She explained: It’s not the retirement we had envisioned. We planned to have homes in different places and then the back hit. … So [husband] said, ‘Maybe Hawaii isn’t where we want another house,’ so scratch that, and that was all pretty much because of my back and the pain and the travel… So we decided we just live here the year round and go on little short trips. So that drastically changed that concept we were going to have. We were going to have a home on the east coast, a home in Hawaii, a home here, and we had thought we’d go to Europe for at least a month every year. We haven’t because I was told not to fly because of my back and my legs. So here we are, big change in what we’ve anticipated. Now, [town] is lovely, but it’s not Paris and it’s not London or Venice. Retirement was generally experienced as a painfully disappointing period whereby pain and disability replaced previously envisioned travel adventures and recreational fun. CLBP rendered the golden years an illusion. Discussion and Implications By phenomenologically investigating older pain clinic patients’ CLBP, this study highlighted the complexities of being old and chronically in pain. Findings showed that CLBP destroys dreams for retirement and the future, complicates other age-related health conditions, creates stigma around the aging process, and generates fear for what the “golden years” will look like. Taken cumulatively, CLBP may be understood as the source of many losses, creating an intense grief experience for older adults and shaping how they see growing old. The results of this study confirm that chronic pain creates a variety of losses (Gatchel, Adams, Polatin, & Kishino, 2002; Worzer, Kishino, & Gatchel, 2009). As Sofaer-Bennett and colleagues (2007) found, the older adults in our study experienced significant loss by way of decreased physical functioning, resulting in restricted recreational and leisure time activities. This, in turn, drastically impacted the quality of their retirements, leading to disappointment, disillusionment, and a longing for prepain functionality. Individuals in this study had been employed for decades and had long envisioned a rewarding, fulfilling retirement period, and the reality of their CLBP led to grieving this unrealized dream. Their current situation was not as they had envisioned and hoped for, and narratives revealed a degree of anticipatory grief, whereby they feared the future and what further decline and losses it would entail. This is a major distinction from younger individuals with CLBP, in which there tends to be a “... perception of a meaningful future. Participants talked about the possibility of working again or an improved social life” (Snelgrove, Edwards, S., & Liossi, 2013, p. 131). Research on younger adults with chronic pain tends to feature the chronic pain itself as the one and only pertinent health concern. By contrast, as illustrated in this study, CLBP among older adults must be viewed in the larger context of the likely multiple comorbid health conditions present. Having multiple chronic conditions in older adulthood is increasingly prevalent (Freid, Bernstein, & Bush, 2012). Though Higgins, Madjar, & Walton (2004) note multiple sources of pain and some comorbid conditions among participants, the interplay between the two was not described. Among the phenomenological studies on younger and middle-aged adults specifically with CLBP, little is mentioned with regard to comorbid conditions and their role in the CLBP experience, focusing instead on the CLBP exclusively. Thus, this study provides insight into how the experiences of older CLBP sufferers diverge from their younger counterparts. In this sense, late-life CLBP is not just a loss of a pain-free existence, it is also an exacerbation of lost global health. Findings highlight the grief-inducing nature of CLBP in older adulthood. Bereavement theories, particularly ambiguous loss theory (Boss & Couden, 2002) may provide clinicians with a framework for understanding older pain clinic patients’ experiences of stigma, invisible suffering, and gradual loss. Our findings relating to stigma support and expand previous knowledge about the stigmatization of individuals with chronic pain (Cohen, Quintner, Buchanan, Nielsen, & Guy, 2011; Holloway, Sofaer-Bennett, & Walker, 2007). Previous phenomenological findings related to CLBP stigmatization include facing disbelief by others (Holloway et al., 2007), malingering for reasons of financial benefit (Walker, Holloway, & Sofaer, 1999), and the concept of a “pain career” (Holloway, Sofaer, & Walker, 2000). This study offers an interesting perspective on pain related stigma, depicting older adults’ stigma as tied largely specifically to their age and frailty. They explained being treated “like they were senile,” detecting stigma surrounding use of a cane, and being labeled disabled. While Parsons, Godfrey, and Jester (2009) noted that older adults with osteoarthritis of the hip and knee thought other people viewed them negatively, the negativity involved being perceived as unable to manage their pain, not ageist stigma. Thus, findings point to age-specific experiences of stigma, in addition to being questioned and invalidated by health care providers. It is important to note, too, that many individuals incorrectly believe chronic pain is a normal aspect of aging, including older adults themselves (e.g., Sanders, Donovan, & Dieppe, 2002), which is some ways may reflect internalized stereotyping. As CLBP forced the older adults to let go of dreams and plans, the stigma of debility was further reinforced and embodied into how they viewed themselves and how they felt society judged them. Several limitations of the study may be noted, which are also detailed elsewhere (Stensland & Sanders, Under review). First, the use of nonprobability convenience sampling prevents large-scale generalizability to the larger older pain clinic patient population. Second, the sample was racially and ethnically lacking in diversity, which hinders our ability to gain insight into the experiences of diverse older adults, who tend to fare worse on pain outcomes in comparison to Caucasian individuals. Third, the immersion of the researcher in interview approaches involves inherent variations from interview to interview with regard to probing, questioning, and general interacting, which has the potential to influence to some degree participant responses, nonetheless generating powerful, deep narratives as intended. Fourth, interpretive methodologies such as phenomenology strongly emphasize the consciousness, thereby operating under the assumption that participants have sufficient insight into their thoughts, speech, and action. The phenomenological interview arguably results in little insight into unconscious thought processes and internalized cultural norms that likely operate in participants’ experiences. This study has important implications for how health care providers and allied professions approach pain management for older adults with CLBP. First, as van Manen (2014) notes, the phenomenological understanding achieved by this study allows practitioners to “... nurture a measure of thoughtfulness and tact in the practice of our professions…” (van Manen, 2014, p. 31). Professionals must remain always cognizant of the complexity introduced by having chronic pain on top of multiple chronic conditions, highlighting the need for exceptionally coordinated care across specialties and between providers. Second, professionals such as social workers, psychologists, and mental health counselors should strive to more systematically assess grief reactions and design psychosocial treatments to address pain-related losses. Third, the fact that participants felt misunderstood and stigmatized emphasizes the importance of unconditional positive regard in clinical contexts. Lastly, given its treatment resistant nature, helping older adults with CLBP set realistic expectations of their aging process is essential, particularly given the monumental impact it has on retirement and late life functioning. Supplementary Material Supplementary data are available at The Gerontologist online. Funding This work was supported by the Ballard Seashore Dissertation Fellowship from the University of Iowa Graduate College. Conflict of Interest None reported. References Administration on Aging . ( 2014 ). A profile of older Americans: 2014 . 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This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model)

Journal

The GerontologistOxford University Press

Published: Sep 14, 2018

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