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Published in final edited form as: Traumatology (Tallahass Fla). 2016 Sep 22;23(1):89–94. doi: 10.1037/trm0000095

A Qualitative Exploration of Resilience among Patients Living with Chronic Pain

Abigail Rolbiecki 1, Roma Subramanian 1, Benjamin Crenshaw 1, David L Albright 2, Mildred Perreault 1, David Mehr 1
PMCID: PMC7833082  NIHMSID: NIHMS1656060  PMID: 33500683

Abstract

An estimated 100 million Americans are living with chronic pain. The majority of the chronic pain literature focuses on the biological impact of the condition and very little attention is given to patients’ lived experience with chronic pain and the enactment of their resiliency. Yet, resiliency may play a critical role in patients’ experience of pain intensity as well as self-efficacy to manage their pain. The main objective of this study was to explore the origin and enactment of resiliency across a sample of 12 chronic pain patients. In-depth phone interviews were conducted, and data were analyzed using thematic analysis. Results indicate that patients exhibited resiliency in four ways: (1) developing a sense of control – independently seeking information and cross-checking this information with their doctors’ recommendations (2) active engagement in medical and complementary treatment; (3) establishing social connections; and (4) exhibiting pain acceptance and positive affect. This study lays the foundation to explore whether resiliency improves clinical outcomes among patients living with chronic pain. The findings support the need for clinicians to evaluate and treat chronic pain patients through the lens of resiliency.

Keywords: Chronic pain, resiliency, pain intensity, self-efficacy, pain acceptance

The 2011 Institute of Medicine report, “Relieving Pain in America,” estimated that 100 million American adults were afflicted with chronic pain in 2010, and this number is anticipated to grow over time (Institute of Medicine, 2012). Estimates on the prevalence of chronic pain are limited by multiple variables, including the lack of a standard definition, survey/interview data relying on patient self-report, as well as the tendency to record patients’ diagnoses, not their symptoms during medical visits (Landmark, Romundstad, Dale, Borchgrevink, & Kaasa, 2012). With such caveats in mind, most experts define chronic pain as pain that lasts longer than three months, and goes beyond the anticipated healing time for acute injury (Elliot, Smith, Penny, Cairns Smith & Alastair Chambers, 1999).

Chronic pain’s impact is staggering, not simply in terms of its sheer prevalence, but also because of its societal costs, including health care expenditures, disability compensation, lost productivity, and lost employment potential (Gaskin & Richard, 2012; Landmark et al., 2012). At the individual level chronic pain has profound effects on psychological and social functioning. For example, the pharmacological focus in chronic pain treatment frequently leads to stigmatizing patients with chronic pain as drug seekers, or worse, they are perceived to have an imaginary illness (Holloway, Sofaer-Bennett, & Walker, 2007; Werner, Isaksen, & Malterud, 2004; Glenton, 2003). These stigmas perpetuate maladaptive coping for patients living with chronic pain and also limit their ability to live authentically in the absence of health (Ong, Zautra, & Reid, 2010). To address this societal burden, health care providers need to foster patients’ ability to live more fully in spite of persistent pain.

Yet, very little is known about how patients with chronic pain exhibit self-efficacy and cope with their condition. Self-efficacy regarding the ability to manage pain, resourcefulness, and ability to incorporate a chronic pain diagnosis into a larger life context, all embody constructs associated with resiliency – that is, ability to thrive and cope in the face of adversity or a stressful life event (Ong, Zautra, & Reid, 2010). The primary goal of this study was to explore patients’ lived experiences with chronic pain and their processes of resilience. We underscore how significant it is for health care providers to begin to evaluate and treat their patients through the lens of resiliency. Furthermore, our findings lay the foundation for intervention research aimed at fostering self-efficacy and resiliency among chronic pain patients.

Resilience

Resilience has become a metaphor to describe the process of bouncing back rather than breaking as a result of stress (Bodin & Wiman, 2004). Resilience has been used to indicate adaptive capacities of individuals (Bonanno, 2004; Butler et al., 2007; Werner & Smith, 1982), human communities (Brown & Kulig, 1996/97; Sonn & Fisher, 1998), and larger societies (Adger, 2000; Godschalk, 2003). Psychological research studies of resilience have focused on the ability to maintain status quo functioning despite major stressors or challenges (Kaplan, Turner, Norman, & Stillson, 1996, p. 158). These “self-righting” tendencies allow the person to avoid breaking under pressure and instead, “spring back” (Vaillant, 1993, p. 248). Resilience includes the skills and abilities that along with knowledge and experience contribute to a person’s ability to meet challenges, cope with those challenges, and overcome them. This capacity for adaptation, and positive recovery despite chronic stress and adversity creates an ability within the person to cope and overcome the stress of pain as well as trauma and crisis over time (Egeland, Carlson, & Sroufe, 1993, in Sonn & Fisher, 1998, p. 458). Coping is a person’s ability to avoid being “harmed by lifestrain” (Pearlin & Schooler, 1982, p. 109). However, this idea of coping and individual power to bounce back is insular and limiting in that it excludes the idea of a support network and other factors that can be learned over time, through therapy or training.

Resilience as it Relates to Chronic Pain

As it relates to chronic pain, resilience has been conceptualized to comprise recovery, sustainability, and growth components that include stable and dynamic resources across both intrapersonal and interpersonal domains (Sturgeon & Zautra, 2010). Psychological resilience and positive emotional states (i.e., positive affect, pain acceptance, and low pain catastrophizing) have been found to change the way a patient copes with his or her pain from day to day (Ong et al., 2010). Theoretical and practical models of recovery and coping have found that individuals with a positive outlook (or positive affect) and high levels of psychological resilience are also more likely to react to, appraise, interpret, and accept their pain, allowing them to better cope over time (Ong et al., 2010). These coping behaviors, in part, are associated with self-efficacy beliefs (Asghari & Nicholas, 2001), which are defined as whether or not the individual believes he or she is capable of the actions to manage pain and if these actions are completely under his or her control. These beliefs are shaped by both the individual’s self-efficacy beliefs concerning actions to manage pain and the likelihood of these factors facilitating or impeding his or her ability to manage pain (Fishbein & Ajzen, 2010). We suggest that these beliefs are important dynamic resilience resources that chronic pain patients can potentially draw upon to live life fully, in spite of pain.

Background of the Present Study

As preliminary work for an intervention designed to increase patients’ self-efficacy to manage their chronic pain, we conducted qualitative phone interviews with a variety of chronic pain patients. For this study, chronic pain is operationalized as having pain for at least six months, and could be either nociceptive – caused by inflamed or damaged tissues in the body – or, neuropathic – caused by damage to the nervous system.

Our purpose of was to explore patients’ lived experiences with chronic pain. These in-depth phone interviews uncovered rich text regarding patients’ chronic pain treatments, their interactions with health care providers (both positive and negative), and the impact of their chronic pain condition on their everyday lives. One of our primary aims was to investigate the origin and enactment of patients’ resiliency. Specifically, we wanted to know how patients in this sample exhibited resiliency and how this affected their coping (their ability to manage their pain) and function.

Methods

Between July 2014 and July 2015, we conducted semi-structured, in-depth interviews with 12 chronic pain patients. Patients were recruited in a variety of ways: through an outpatient family medicine clinic of a large mid-western university hospital; through a chronic pain Facebook group; and through the personal networks of the researchers involved in this project. It is important to note, however, that for the purposes of triangulation, the researchers who suggested personal contacts did not conduct any interviews; this helped to avoid bias and preserve the integrity of the interview data. Different recruitment strategies were used as a way to minimize selection bias and also to capture a diversity of chronic pain experiences, and thereby, enhance the richness of the data.

Recruiting patients with chronic pain proved challenging as these patients are hard to access. They feel besieged with multiple health problems, and their lives are consumed with the management of their health. Indeed, it took 12 months to recruit the 12 patients for this study. Of the recruitment strategies, drawing on personal contacts proved to be the most fruitful. Each of the 12 patients shared their unique chronic pain story, providing in-depth insight to the lived experience of chronic pain.

The 12 patients comprised 9 women and 3 men from different parts of the United States, and they ranged in age from early 20s to early 80s. All participants were Caucasian. They also varied in their experience of chronic pain—some had just recently been diagnosed with chronic pain (in the past 6–8 months to a year); others had experienced chronic pain for several decades. The cause of the chronic pain also varied—for some, the pain originated from a physical injury (for example, a spider bite, a sports injury, or a workplace accident); for some, the pain was connected to a genetic disease; and for others, the origin was unknown. Patients’ diagnoses included psoriasis, fibromyalgia, undifferentiated connective tissue disease, complex regional pain syndrome, and a combined diagnosis of ankylosing spondylitis and psoriatic arthritis.

Interviews were conducted with the help of an interview guide. Questions focused on topics such as the nature of the pain (year of onset, nature of inciting event, current location of pain, and general description of its quality), type and range of treatments for the pain (both mainstream and alternative), treatment efficacy, health-information seeking, nature of physician-patient communication (for example, participation in decision-making), goals for treatment, and pain questionnaires. Interview questions included “Can you tell me how you came to have chronic pain?” “What treatments have you been taking for your pain?” “What kind of information does your doctor give you about your pain?” “Does your doctor involve you in decision-making regarding your chronic pain treatment? If so, how?” “What would you like treatment to do for you?/Do you have a goal for your treatment?” Further, to obtain detailed responses, participants were asked questions such as “Could you tell me more about that?” “Could you give me an example?” or “What do you mean by that?” Also, at the end of the interview, participants were asked questions to assess their pain level, such as “In the past 24 hours, how much relief (on a scale of 0 to 10, where 0 is no relief and 10 is complete relief) has the pain treatment or medication provided?” All interviews were conducted by phone and were recorded and transcribed. The interviews were about an hour long.

The University’s Institutional Review Board (IRB) approved this study, and informed consent was obtained orally from all patients. Specifically, at the start of the interview, each patient was informed about the study purpose, duration, and confidentiality procedures. Data were analyzed by two researchers using thematic analysis. A third researcher, who was not involved either in interviewing patients or in analyzing the data, served as a member check. The study researchers were a mix of able-bodied individuals, individuals who themselves had chronic pain or who had family or friends with chronic pain, and individuals who treated patients with chronic pain. Given the heterogeneity of these identities, the researchers reflected on any similarities or differences between the interviewees and themselves, and how this may have affected participant response.

Results

Interview data revealed the following themes regarding patients’ process of resilience: (1) developing a sense of control – independently seeking information and cross-checking this information with their doctors’ recommendations (2) active engagement in medical and complementary treatment; (3) establishing social connections; and (4) exhibiting pain acceptance and positive affect. Although these themes were derived from patients’ lived experiences, it is important to note chronic pain conditions, levels of pain intensity, and the stages of the disease process are individualized experiences; thus, the manner in which they participated in their treatment and care, their levels of resourcefulness, and their intensity of engagement in social support is also individualized. Examples of how patients demonstrated resilience are highlighted below. Pseudonyms are used in replace of names in order to protect the confidentiality of the patients in this sample.

Sense of Control

Patients established a sense of control by seeking out information regarding their chronic pain conditions, as well as cross-checking this information with recommendations and diagnoses provided by their doctor. For example, Sue, discussed how she explored the internet to better understand her symptoms. During her research she discovered a rare chronic pain condition called Ankylosing Spondylitis. She explained that by exploring her symptoms online, she better understood her condition, and could describe her symptoms more accurately to her doctor. In a way, she felt that she was also educating her doctor about her condition, using this knowledge to advocate for special tests in order to receive a formal diagnosis. Sue said:

If I wasn’t my own advocate…and if I didn’t have other means of finding information…I would be much worse off, and I think a lot of people are with conditions like this. They spend years looking for the right diagnosis. I’m even lucky that three and a half years after my initial pain [I received a diagnosis]…the average amount of time that it takes for this is five years.

Similarly, Henry used the internet to explore his chronic pain condition, and discovered a myriad of innovative treatment plans to consider. He explained that because of this knowledge, he and his doctor were able to collaboratively decide on a treatment plan. Henry said:

[I’ll do] anything that might affect any way I can improve the way I feel, the way I manage pain, the way [my doctor] manages my pain…If I’m watching television and I see a new treatment that’s available, I’ll go and read up on it…I’ll try to look that up and see if there’s something on the horizon to try…I may take that in to [my doctor] and we discuss it.

Participants also demonstrated control by cross-checking the information they received from their doctor with information they obtained themselves. For example, Sue reads medical studies as a way to make executive decisions about whether to embark on a treatment plan suggested by her health care providers. She said:

The studies [I have read], a lot of them were saying that several of the older medications are being eased out and thrown away because not only are they not halting damage, but a lot of them are damaging…I go on the weight of evidence that I collect over a period of time before I will make any kind of decision about what I am doing for myself.

David also “double checks” his treatment regimen with online medical sources to protect his health and safety. When referring to his doctor David said, “nobody’s perfect. Since I have so many medications on there, you never know… someone might make a mistake.”

Active Engagement in Medical or Complimentary Treatments

Patients’ active engagement in medical, and/or complimentary treatments is another way they demonstrated resiliency. For example, physical activity and proper diet were described as primary ways patients managed their pain. Henry walks as a way to manage his pain – he said: “Walking helps me…by losing weight. It builds up my muscles and keeps me flexible. After you exercise you feel mentally alert.” He continued, “[I decided to walk] basically on my own, not under any kind of order from a doctor.” Similarly, Amina engages in physical activity as a way to manage her pain, and said: “I go to physical therapy twice a week. I’m working on my posture.”

Some patients altered their diets as a way to manage pain. Sarah said that she eliminated caffeine and artificial sugar from her diet. Likewise, Bethany learned that diet management is one of the primary ways to reduce inflammation associated with her chronic pain condition. She said, “according to everything I’ve read…[diet change] is one of the biggest things you can do for your fibromyalgia” and went on to describe the ways in which she altered her diet (e.g., increased magnesium).

A couple of patients engaged in alternative treatments as a way to relieve their pain. Amina described a dry needling procedure and said:

We do this thing…where my doctor puts a needle, just the same as acupuncture, but goes down into the muscle and activates it…it makes a little twitch, and that twitch sort of sets it back… It’s pretty alternative…I feel like it was probably derived more from Eastern medicine…but it has been the most effective thing for me.

Sue also noted her experience with alternative medicinal approaches. She said, “The best care overall that I’ve received since the beginning was alternative care, by far.”

Establishing Social Connections

Patients in this study discussed their process with developing social support networks, and how this impacted their ability to cope. During the early stages of their diagnosis, Bethany and Sue participated in online communities as a way to feel supported. Though these groups were often helpful, Sue spoke about how they could be counterproductive, or maladaptive. She referred to online support groups as a “double-edged sword” but agreed that these forums are beneficial for obtaining information and support during your “lowest times.” She said, “When I was first diagnosed, I went on a patient forum online…I got some information there, some people pointed me in helpful directions. I didn’t end up staying on that forum…I think the reason is because people go there when they’re at their worst.” She continued, “It’s when you’re in a really awful place and you have no support…that’s where people go to find it.” Bethany also shared how online groups can be helpful and “sad” at the same time. She said:

I found some stuff online, but I don’t know….Reading some of it is helpful and encouraging, but a lot of times I just think it’s really sad. I feel like I find dealing with my own [stuff] hard enough that it makes me even sadder to have to think about somebody else dealing with the same stuff.

Amina and Taylor described how they reached out to family as a way to seek social support. They mentioned that this support also helped with their activities of daily living. For example, Amina discussed how her brother was living with her for the summer in order to help with some of the daily chores like grocery shopping. In addition, she stated that she had another friend moving in with her in order to help. She said, “I have a pretty good support system.” She also noted that her mother was her biggest support. Taylor discussed similar experiences and said, “I guess I’m [in] luck in that my friends are very supportive and forgive me when I have my bad moments…so does my family.”

Some participants discussed their deepened faith and spiritual growth as a source of support. Henry mentioned going to church as a way to engage with people on a social level. Similarly, Taylor found relief in prayer and said, “My faith helps me make it through.” In discussing the multiple layers of her pain and suffering, Nora described prayer as a source of support and relief. She said:

I have this more eternal focus. I believe in a God who loves and cares for us. I know that this world has many troubles in it…[In addition to pain] I’ve experienced the death of a son, and my husband. But I have this hope in God that ultimately everything will be okay…my faith has sustained me all the days of my life…[including] my pain.

Pain Acceptance and Positive Affect

Finally, patients demonstrated resilience in terms of their attitude, specifically, their ability to accept their pain condition as part of their self-narrative, as well as their positive affect.

Henry demonstrated pain acceptance by saying:

My goal is to live life the best I can. Deal with the cards that I have been dealt. That’s pretty much where I am at. I don’t think I’m going to get much better than I am right now. I think I’ve reached pretty much the maximum improvement…life is what it is and what it’s going to be…I am pretty much doing everything I can do right now.

Nora demonstrated pain acceptance when she said, “[I do not] necessarily hope that the pain will go away…just that life can go well, even though I have had trouble.”

Taylor, a teacher, explained that she feels compelled to remain positive for her students, in spite of her pain intensity. She said:

[Even though] I am not as happy and bubbly as I used to be…even if I’m hurting…I make myself [be happy]…I don’t want to not live life. I want to live. I want to enjoy every moment, because I know I am blessed to be here. I am going to try to make the best of it…I’d rather [be in] pain for a little while, than [be alone].

She continued, “I think it helps, when you work with kids, it’s very purposeful.” Taylor ended with, “I guess you do find a strength that [you] didn’t even know [you] had…I wouldn’t consider myself a strong person, but yes, I can see where I just dig down deep, pull it up, and let’s go.”

Similarly, Nora said, “I mean, I keep perspective in mind…I can do what I want to do…I consider that a blessing. I’m not in agony like many people.” She continued, “I have a lot of hope…keeping the hope high helps me ignore [the pain].” She continued to relate her positive affect to her coping and said:

If I’m really engaged in something, I do not realize, for a while, that I am [in pain]. I think having hope…and dwelling on the good, can help a lot. That doesn’t come naturally to me…the more I practice considering my blessings… the more I can ignore [the pain] and keep on with my life.

Eric exhibited positive affect by trying to find meaning in his chronic pain experience. He explained, “I have always thought, at the end of the day it’s my life that I have to live…everything happens for a reason, and I still believe that very much there’s a reason that this [pain] has occurred.”

Discussion

The overall purpose of this study was to explore patients’ lived experience with chronic pain, and to explore the origin and enactment of their resiliency in spite of living with a chronic pain condition. Twelve patients were interviewed about their chronic pain condition and their experience with receiving care. The following themes were identified: (1) developing a sense of control – independently seeking information and cross-checking this information with their doctors’ recommendations (2) active engagement in medical and complementary treatment; (3) establishing social connections; and (4) exhibiting pain acceptance and positive affect

Consistent with research focusing on resilience among chronic pain patients, this study demonstrates the influential role resiliency plays in one’s ability to cope in the face of a chronic pain condition. These findings support the small, existing body of chronic pain resilience literature. Specifically, we know that increased self-efficacy and resiliency can lead to adaptive coping strategies for patients living with chronic pain (Sturgeon & Zautra, 2010). We also know that patients who have more self-efficacy, tend to be more resilient, and as such, typically have lower pain intensity and better function (Sturgeon & Zautra, 2010). However, clinicians tend to focus on the biological ramifications of chronic pain, focusing on pain intensity and elimination. This has the potential to perpetuate the idea that a chronic pain condition can be eliminated with medical interventions such as narcotics and other therapies. This also threatens the ability for patients to accept their chronic pain condition as part of their self-narrative, which limits the ability for them to engage in adaptive coping, thus reducing the potential for resiliency.

As reflected through the patient stories, chronic pain is a complex, poorly defined, and consequently, poorly understood issue. There is very little emphasis in the medical literature on patients’ lived experience and self-efficacy to manage and cope with their condition. This lack of a psychosocial focus on chronic pain limits researchers’ and clinicians’ ability to explore patients’ strengths and resiliency. In respect to an individual’s resiliency and ability to cope with chronic pain, indicators such as faith, family support and desire to manage their pain have all been found to be indicators of resilience (as is consistent with individual indicators of resilience in medical patients Walsh, 1996).

Furthermore, the medical narrative is to remain professionally disengaged, and to overly emphasize the biological aspects of chronic pain, with a resultant focus on pharmacologic and procedural options in its management. What this qualitative study shows us is that patients, and their own strategies for addressing their condition, are a potentially untapped yet powerful resource. They can and should be partnered with, to harness and foster their own resiliency, rather than negate (or silence) it. By “entering in” to the individual lived narratives of their patients, providers can begin to tap into this most important resource for addressing the burden of chronic pain.

Finally, this study lays the foundation to explore whether resiliency improves clinical outcomes among patients living with chronic pain. The findings support the need for clinicians to evaluate and treat chronic pain patients through the lens of resiliency. However, in order to achieve this, it’s important to investigate how clinicians view patients with chronic pain, and whether or not they themselves understand the concept of resilience and how it can be applied to their patients and their clinical practice. With these challenges in mind the study recommends that in practice, clinicians help patients living with chronic pain to harness positive resilience, building relationships when possible. Practical attention to the environments and support structures of patients might better equip health workers to empower chronic pain patients and build resiliency.

The study’s main limitation was a challenging recruitment process. As mentioned before, it took 12 months to recruit and interview 12 patients about their experience with chronic pain. We recruited a convenience sample of patients for this study and relied on word of mouth as well as established relationships with patients, friends, and family members living with chronic pain. Perhaps developing a more sophisticated recruitment strategy would contribute to a larger, more robust sample, as well as reduce the time it took to recruit participants.

Conclusion

In this study, we identified four themes concerning how chronic pain patients exhibit resiliency: (1) developing a sense of control – independently seeking information and cross-checking this information with their doctors’ recommendations (2) active engagement in medical and complementary treatment; (3) establishing social connections; and (4) exhibiting pain acceptance and positive affect. This study demonstrates the positive influence resiliency has on patients’ ability to cope. Findings emphasize the need for clinicians to take a broad approach to pain, one that supports patients’ resiliency in response to the challenges of chronic pain.

Acknowledgments

Funding

This project was supported by grant number R24HS022140 from the Agency for Healthcare Research and Quality. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Healthcare Research and Quality.

Author Bios

Abigail J. Rolbiecki, PhD, MPH, MSW is a postdoctoral fellow in the Department of Family and Community Medicine at the University of Missouri, Columbia, Missouri, USA.

Roma Subramanian, is a doctoral candidate in the School of Journalism at the University of Missouri, Columbia, Missouri, USA.

Benjamin Crenshaw, MD, is a family practitioner and faculty member in the Department of Family and Community Medicine at the University of Missouri, Columbia, Missouri, USA

David L. Albright, PhD, is an associate professor and Hill Crest Foundation Endowed Chair in Mental Health at The University of Alabama in Tuscaloosa, Alabama, USA.

Mildred Perreault, is a doctoral candidate in the School of Journalism at the University of Missouri, Columbia, Missouri, USA.

David Mehr, is the Director of Research in the Department of Family and Community Medicine at the University of Missouri, Columbia, Missouri, USA.

Footnotes

Declaration of Conflicting Interests

The authors have no conflicts of interest with respect to the authorship and/or publication of this article

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