Original Article The Experience of Loss in Patients Suffering from Chronic Pain Attending a Pain Management Group Based on Cognitive-Behavioral Therapy ---
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From the Department of Health Studies, Faculty of Social Science, University of Stavanger, Stavanger, Norway. Address correspondence to Cecilie Haraldseid, MSc, Institutt for Helsefag University of Stavanger, 4036 Stavanger, Norway. E-mail: cecilie. [email protected] Received November 21, 2011; Revised April 13, 2012; Accepted April 17, 2012. 1524-9042/$36.00 Ó 2014 by the American Society for Pain Management Nursing doi:10.1016/j.pmn.2012.04.004
Cecilie Haraldseid, MSc, Elin Dysvik, PhD, and Bodil Furnes, PhD
ABSTRACT:
Chronic pain has been found to cause significant losses in the lives of those who experience it. To improve their life situation, it is important to understand the impact of these losses and manage them effectively. The aim of this study was twofold. We wanted to investigate which phenomena in the lives of patients with chronic pain could be described as experiences of loss, and whether a cognitive-behavioral therapy (CBT)–based group approach could help them process such losses. A qualitative approach based on semistructured interviews with six patients was chosen to investigate the experiences of patients with chronic pain. The findings in this study indicate that the patients experienced several losses: loss of ability to engage in meaningful activities, loss of relations with others, and loss of self. The experience of loss in their life situation can be difficult for them to deal with and creates a need for support and guidance. The study indicates that participation in a CBT-based group that focuses on processing these losses can be beneficial in helping patients identify and accept the losses and changes they have experienced, and thereby change their behavior toward a meaningful life despite their chronic pain. Failure to address these losses may result in patients obtaining few of the benefits that could be gained from pain management groups. Because the findings point to the synergies among several components in the program, it is difficult to isolate the effects of a single component. The conscious use of CBT-based elements, i.e., changing behavior by changing thoughts and feelings, in the pain management group seemed to help them to process the losses through new insight and understanding. Ó 2014 by the American Society for Pain Management Nursing
Pain Management Nursing, Vol 15, No 1 (March), 2014: pp 12-21
Experiences of Loss in Chronic Pain
In Norway, chronic pain affects 30% of the adult population (Breivik, Collett, Ventafridda, Cohen, & Gallacher, 2006), an incidence nearly double that of neighboring European countries (Rustøen, Wahl, Hanestad, Lerdal, Paul, & Miaskowski, 2004). Patients with chronic pain experience considerable losses as a result of the multiple impacts it has on several aspects of their lives (Roy, 2008). The experience of loss is universal to human life. During the life span we experience losses of different types and magnitude, and perhaps death can be seen as the ultimate loss (Miller & Omarzu, 1998). Loss may vary from person to person and is defined individually (Harvey, 2000). Miller and Omarzu (1998) defined loss as life events or changes that can result in someone being or feeling deprived of something valuable. Chronic pain is seen as a state with the potential to leave a person feeling deprived of what he or she values because of compromises or losses (Roy, 2008). Living with chronic pain has been found to cause losses in different aspects of life (Gatchel, Adams, Polatin, & Kishino, 2002; Walker, Sofaer, & Holloway, 2006) and these losses potentially change how patients with chronic pain think of and perceive their lived world. Researchers emphasize that it is important to address loss in all rehabilitation programs to ensure compassionate treatment for patients with chronic pain (Gatchel et al., 2002). Recent findings suggest that patients who suffer from chronic nonmalignant pain experience grief related to loss similar to the grief caused by death (Furnes & Dysvik, 2010a); while Harvey (2002) states that the aim of dealing with grief should be to learn to live with the loss. Treatment options for patients with chronic pain should therefore help patients adjust to their new life situation by addressing loss as a specific experience (Furnes & Dysvik, 2010a). However, there are few reported intervention strategies and literature on the topic is scarce (Roy, 2001). Pain is both a sensation and an emotional experience that includes the individual’s thoughts and feelings (Turk, 2003). Living with pain influences both well-being and mental and physical performance. Basler, Jakle, and Kroner-Herwig (1997) argued that a cognitive-behavioral therapy (CBT)–based treatment could be beneficial for patients experiencing chronic pain because it takes into consideration that chronic pain is a multifaceted phenomenon, not merely a neurophysiologic state. CBT aims to change behavior through changing a person’s thoughts and feelings, based on the belief that people themselves are instruments in developing and maintaining maladaptive features (Turk, 2002). According to Furnes and Dysvik (2010a), research and practice that consider losses in the lives of patients with chronic pain will be valuable.
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Research is therefore needed into the benefits of a CBTbased pain management group that addresses loss for patients with chronic pain. Based on this background, the present study’s aim was twofold. We wanted to investigate which phenomena in the lives of patients with chronic pain could be described as experiences of loss, and whether a CBT-based group approach could help them to process such losses.
METHOD A phenomenologic approach with semistructured interviews (Appendix A) was used to explore the lived experience of patients living with chronic pain (Kvale, 2006). The study was conducted with six patients suffering from chronic pain who had completed an 8-week CBT-based pain management program. (Appendix B) Interviews were conducted 6 months after completion of the program to give participants the opportunity to reflect consciously on their losses and decide whether the pain management program had helped with the processing of them. Participants Six participants were recruited through a learning and coping center at a university hospital in Norway as part of a greater study. They were all members of one pain management group and had taken part in an ongoing rehabilitation program. Recruitment was done in collaboration with the leaders of the group who initiated contact with potential participants. To be assessed for group participation, the participants underwent faceto-face interviews by the nurses at the learning and coping center before inclusion. Inclusion criteria for participation in the pain management program were set before the study. They included age 22-65 years, not affected by major mental disorder or serious medical conditions, medical investigation and/or treatment completed, motivated to participate in an active rehabilitation program, assessed as suitable for group participation, and able to write and speak fluent Norwegian. Specific criteria were added for those who participated in the present study: completion of the 8-week program, attended follow-up at 6 months, and willing to give informed consent. The participants were three men and three women with an average age of 43 years (range 32-55 years). Only one was employed at the time of the interviews. Five had children, and four were living in relationships. Data Collection Interviews lasted 40-60 minutes and were conducted in the learning and coping center. The semistructured interview guide was designed to capture experiences of
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TABLE 1. Example of Three Interpretation Levels Self-Understanding Don’t want to go out with pain, loved traveling, took annual trips, sad not being able to travel anymore. Hold ‘‘it’’ on the inside, put makeup on, twinkle in my eyes, collected energy for three days, finally make it, hope many can see how healthy you look. Not a typical love relationship, only have children together, that’s how it has become Everyone else works, then the loneliness came, I had to be home, I lost my network.
Common-Sense Understanding
Theoretic Understanding
Loss of ability to engage in meaningful activities
Development of self—Mead (2005)
Loss in relation to others
Recognition of others—Schibbye (2009)
Loss of self
Development of self—Mead (2005)
loss in the lives of chronic pain patients and to investigate whether a CBT-based group approach had helped them process such losses. Themes that were covered included social networks, work situation, self-esteem, feelings of control over own destiny, thoughts about the future, and experiences from the group participation. Data Analysis All interviews were recorded and transcribed by the interviewer within a day of the interview. The transcribed interviews were analyzed with the use of Kvale and Brinkmann’s (2009) qualitative research method with three levels of interpretation (Table 1). The first step, referred to as subjects’ ‘‘self-understanding,’’ entailed reading through each transcript several times to get an impression of what was being said. Meaning units were extracted from the text and organized under different preliminary themes. The meaning units were then condensed and given codes. In the second step, critical common-sense understanding was used to add a reasonable assumption of what was being said to the participants’ statements. The codes were then labeled and organized under new themes, and the themes were illuminated by theory. The third step, theoretic understanding, enables the researcher to interpret the data within a theoretic frame (Table 2). Ethical Consideration Ethical approval was obtained from the Regional Committee for Medical and Health Research Ethics. Each participant received written information about the study by mail, including information about their right to withdraw from the study at any point without any negative consequences. Signed informed consent forms were handed to the group leader by those who wanted to participate.
The participants’ identities were then revealed to the author, who contacted them to schedule interviews.
FINDINGS In this section experiences of loss followed by experiences from group participation are discussed.
Experience of Loss The first part of the interview guide focused on different experiences in the lives of participants with chronic pain that could be understood as loss. The empirical material indicated that the patients mainly experienced loss in connection with three different aspects of life: loss of abilities to engage in meaningful activities, loss of relations with others, and loss of self. Loss of Ability to Engage in Meaningful Activities. The central finding was loss of work, social activities, physical activities, and hobbies. As a result of chronic pain, participation in these activities was no longer possible, which has therefore been understood as loss. As a direct result of the chronic pain, most of the patients had to give up their work, because their physical limitations rendered them incapable of fulfilling workplace demands. The loss of employment influenced them highly, because it was seen as an important part of their life: ‘‘I miss it tremendously! The work was my life! That’s what mattered: a kind of cornerstone.’’ Some of them felt forced out of their workplaces as a direct result of frequent periods of sick leave: ‘‘It was exactly the work I wanted . so it was an extra big loss when I was asked to leave, due to excessive amounts of sick leave.’’
Experiences of Loss in Chronic Pain
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TABLE 2. Illustration of the Analysis Process
Their loss of employment was in no way wanted and as a consequence they were forced to receive social security or welfare: ‘‘So now I receive social security and I can not work, something I wish from the bottom of my heart that I could.’’ The reduced income created economic restrictions that kept them from participating in social activities: ‘‘you can not afford this and that . so those things disappear, and then there are more and more people that pull away, and you are left with few friends, very few.’’ Hobbies and previous physical activities were also affected. One of the participants had loved traveling, but this was now impossible because of the difficulty of spending prolonged time in one position. Playing soccer, knitting, fishing, and participation in mountain hikes were other activities that were now difficult or impossible for them. Loss of Relations with Others. Loss of close relationships with spouses, children, parents, and friends was seen as the greatest loss. Participants often found that others did not understand them or questioned their behavior and decisions. In turn, participants refrained from telling others how they felt, because of not wanting to complain, trying to keep up appearances, and the need to protect both themselves and others: ‘‘I’ve learned to keep my mouth shut, not to talk about it. It serves no purpose.’’ This poor communication often seemed to cause misunderstandings, distance, and conflicts in their close relations. Participants lacked the capacity they once had to contribute and join in as spouses, friends, daughters, sons, and parents: ‘‘With the kids, I might just join
in on that one activity, not able to be there all the time, but just at that one thing.’’ Changes caused by chronic pain especially affected relationships with their spouses: ‘‘It’s not the typical love relationship I would say. It’s more the fact that we have children together . that’s just how it has become.’’ Chronic pain influenced their moods, their ability to work, and their opportunities to participate and contribute, resulting in reduced social contact. The shift from their previous active lifestyle to a more isolating existence caused them to lose part of their network: ‘‘What I miss the most may not be what I did there, but the people around me.’’ Loss of Self The main areas of attention regarding loss of self were related to how they had changed as persons and their thoughts about themselves. Some of them experienced major alterations in cognitive function because their ability to concentrate and short-term memory were affected. Problems with concentration and memory affected both work and self-esteem: ‘‘I worked, but I took three times longer than I used to . It’s just not how I work. I don’t want to be sitting there doing mumbo-jumbo.’’ Others experienced poor sleep quality, reduced appetite, and excessive sensitivity to touch. Some felt bad tempered, became easily irritated or angry, and experienced frequent altered moods. One of them said, ‘‘I get really angry when things don’t work . when I can not do stuff and I am tired and exhausted. I can feel I have a lot of anger.’’ They
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also reported changes in their physical ability: ‘‘It’s frustrating when you no longer can do what you are used to.’’ The changes in their lives caused by the chronic pain led to changes in their feelings about themselves and their identity: ‘‘I lost that identity, because it means a lot when you have studied for a long time and finally start working . that broke me down.’’ Feelings of being misbelieved and not understood by others often triggered the need to hide behind a mask. It was often important for them to present themselves as ‘‘normal,’’ not showing the world around them how they really felt: ‘‘It’s because of your selfworth, who you are, and who you want to show it to.’’ The participants often felt judged and stigmatized by the people in their surroundings, which seemed to influence how they perceived themselves. The chronic pain had also caused the participants to believe they were no longer fulfilling their commitments as spouses, friends, children, and parents: ‘‘I don’t feel I manage to be a good-enough mother, even though my daughter reassures me I am, I don’t feel like it.’’ Group Participation Experiences The second part of the interview was designed to show whether elements of a CBT-based group had helped them process the losses they had experienced. The participants emphasized the climate of warmth and social support within the group as important elements of group participation. In addition, they identified homework tasks that included self-help education material as important. Group Climate. Referring to the group climate, several of the participants pointed out fellowship, understanding, and trust as important elements in creating a good group atmosphere where they could share their feelings. One of the participants said, ‘‘We soon gained trust in each other when it was totally clear that what was being said in the group, remained in the group.’’ Trusting each other enabled them to share their life stories. When sharing their feelings it soon became clear that others also experienced similar problems: ‘‘Most of the group participants dug deep and shared, there were a lot of tough stories, and then you see you are not the only one to struggle.’’ Through sharing their feelings, they discovered that others had similar problems, and this created fellowship, understanding, and acceptance. Social Support. The importance of social support emerged without any specific questions from the interviewer. All participants talked about the importance of having someone with similar experiences who understood and supported them. When revealing their
problems, common experiences were illuminated: ‘‘I recognized myself in everything he said! Everything! It was like: ‘Yes! Yes! Yes!’’’ According to this participant it was easier to understand each other when you knew you were talking the same ‘‘language’’ and because you knew you were understood: ‘‘You feel a companionship, not to whine or complain, but you feel that people know what you mean when you say you have not been able to get into the shower today. People know what it means.’’ Homework Tasks. In addition to being a part of a group, the participants were given homework tasks during the program that they now used in their everyday life. Relaxation techniques and therapeutic writing were mentioned particularly as effective techniques by all of the participants. One of them described the importance of relaxation techniques like this: ‘‘You manage your pain better. You know what to do now! If it starts to reach the top.’’ The use of writing as a processing tool was described as tough but rewarding work. One of the women described it like this: ‘‘To dare being honest to yourself . I had to swallow a few camels there. But I learned a lot.’’ Making participants write down their thoughts and feelings led to reflection about different situations and enabled them to identify problem areas in their everyday lives: ‘‘After you had written it down, you gained a new focus, you shared with others, and you got advice and guidance.’’
DISCUSSION The aim of the study was twofold, to investigate phenomena in the lives of patients with chronic pain that could be explored as experiences of loss, and whether a CBT-based group approach could help them process such losses. The discussion follows the same sequence as the Findings section. Experiences of Loss The findings in this study indicate multiple losses in the lives of patients suffering from chronic pain. Loss of ability to engage in meaningful activities, loss of relations with others, and loss of self have also been found in earlier research investigating experiences of patients with chronic pain (Walker et al., 2006). Other previously reported themes include not being understood by those around them and feeling changed as a person (White & Seibold, 2008), both of which were found in our study. A major finding in the present study was that all participants lost their ability to engage in activities that were important and meaningful for them. This seemed to influence their well-being and caused them
Experiences of Loss in Chronic Pain
to experience loss. Schibbye (2009) states that the person we are depends on who the people around us allow us to be. Personhood is created in a context of social relations and we change roles depending on the situation and the people around us. Roles and identity shift when chronic pain prevents someone from engaging in what was previously taken for granted (Henare, 2003). Abraıdo-Lanza and Revenson (1996) found that important role identities contribute to competence, selfesteem, and self-efficiency. Loss of these roles through chronic illness therefore had a devastating impact on psychologic well-being. Compared with the present study, those findings reflect the participants’ experiences of how changes in their ability to undertake meaningful activities affected their perceived important roles and ultimately caused them to experience a sense of loss, influencing their well-being. Participants reported that loss of employment contributed to loss of identity, meaning, and self- worth, leaving them feeling unwanted by society. According to Roy (2004), work is one factor that appears to define identity, because it ranks people in social positions and gives them specific roles. In addition, he claims that loss of work includes the risk of losing social interactions and friends. Walker (2010) supports these findings; he found that loss of employment not only affects income, but also social interaction and chosen identity, forcing people to adapt to a deviant role in society. The loss of meaningful activities thereby seems to influence their lives, causing them to lose old roles and being forced into new, unwanted roles. All participants described various problems in their relationships with others. Several participants found relations with children, spouses, and parents to be most difficult. They described how they refrained from explaining about their pain because their feelings were not understood by those around them. Schibbye (2009) states that acknowledgement may be lost if two acknowledging subjects are not able to switch imaginary roles and understand the opposite person’s view. Interpersonal relations may suffer from the lack of mutual understanding, which causes the relationship to come to a halt. The inability of the pain sufferers and their significant others to see things from each other’s perspectives could therefore explain aspects of why the participants had refrained from communicating, leading to problems in the participants’ relations. Participants indicated that they, and especially their relations within the family, had been influenced by their inability to participate and contribute as before. When Kryst and Scherl (1994) investigated the social and personal impacts of headache in Kentucky, they found that efficiency at work, attendance at
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social events, capacity for planning ahead, relations with friends, and self-image were all reported to be affected. Smith (1998) also found that a majority of migraine sufferers reported their pain as having significant impact on their families. According to Lyons and Sullivan (1998), illness and disability never occur in a vacuum for the individual alone, but exist in a context of social relationships, and interpersonal losses are therefore inevitable. We are born into a community, constantly have to relate to the people around us, and therefore ‘‘relations to others are both the most important and the hardest for us,’’ according to Øiestad (2009, p. 36). The loss of their ability to participate and contribute therefore caused loss of relations with their close family. In addition to their inability to engage in meaningful activities and loss of their relations with others, the present study indicates that participants experienced a loss of self. The personal changes caused by chronic pain seemed to make them become different in mood, thoughts, behavior, and feelings of self. Identity is defined as something that comprises who we are and our characteristics as unique persons (Collins Dictionary, 1979). Our self-definition is based on our perception of what and who we believe we are. We experience a great deal of well-being through our ability to meet the demands and obligations placed on us as workers and spouses (Roy, 2004), an ability that can be lost because of chronic pain. Facing chronic pain does not relieve someone of their role as a spouse, but it may make the fulfillment of its obligations harder (Roy, 2004). Participants’ personal changes had altered the characteristics that made up who they were, and this seemed to affect their ability both to fulfill roles and to make changes, leading to a sense of loss of self. Loss of self also included the aspect of changed thoughts about themselves. Participants’ thoughts consisted of how they were perceived by others and how they perceived themselves. Christiansen (1999) described identity as a composed definition of self, and argued that identities are socially interconnected. Because identity is shaped through interaction with others, loss of identity is closely connected to losses in interpersonal relations. This pattern is circular; if a person changes it could affect the lives of those they are involved with (Kelley, 1998). Findings in the present study could therefore indicate that loss of relations influences participants’ feelings of self, and this is consistent with Mead’s (2005) view that the individual perception of self does not occur directly, but occurs as a reflection of the distinct perspectives of other members of his or her social group. Gatchel et al. (2002) reports that negative social perceptions contribute to distress and enhance difficulties in managing
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life situations. A negative perception of self and assumed negative perceptions from others will therefore have the potential to affect the person’s feelings of self. Roy (2008) also states that social roles constitute the main center of one’s identity. The inability to engage in meaningful activities and loss of relations ultimately seemed to influence participants’ identity and feelings of self: ‘‘It becomes a struggle wherever you turn.’’ Henare (2003) stated that one’s roles, activities, occupation, and tasks reflect one as a person. Losing the ability to participate in meaningful activities and loss of relations with others because of chronic pain could make sufferers begin to lose their sense of self. There appears to be, therefore, a close relationship between these three aspects that were previously considered separately: the loss in ability to engage in meaningful activities, loss of relations, and loss of self. Group Participation Experiences The second aim of the present study was to explore whether the CBT-based group approach helped participants process the losses they had experienced. The study indicated that group climate and social support, together with homework tasks, had been essential in identifying problem areas and managing everyday life. The group climate was important to participants, because it created a trusting environment where they could disclose themselves and find understanding and support from people with shared circumstances. This finding is supported by Thorn and Kuhadja (2006), who stated that group formats fulfill a supportive functioning, allowing patients to share their inner selves to others with similar circumstances. The establishment of a positive group climate, therefore, created a fertile environment for disclosure of their thoughts, which seemed to help them identify losses and problems they had in common with others in the group. MacKenzie (1990) explains that self-disclosure is at the heart of group participation because it is essential for identifying problems and learning from each other. The group climate seems to be important, therefore, to enable self-disclosure. The discovery of common losses seemed to create understanding and social support in the group. Sharing stories also made participants realize that they needed to communicate with those around them and tell them how they felt and what they needed. Communication and a shift in perspective helped them to think differently about their situation and gave them the opportunity to work on their problems. They also realized that change depended on their own efforts and active participation. If they wanted to change, they had to do the work themselves. The combination of good group climate and social support seemed to help them accept and acknowledge their losses and problems, making them
receptive to change. MacKenzie (1990) further states that self-disclosure creates a forum for modeling and learning from each other that can lead to changed behavior. Homework included therapeutic writing around specific themes. This seemed to help participants to reflect on their thoughts, put their problems into focus, and identify losses in their lives. Several findings emphasize the importance of writing as a tool in the recovery process after loss experiences for adapting to the new life situation (Furnes, 2008; Furnes & Dysvik, 2010b). Reported changes as a result of group participation included gaining a new perspective, acknowledging one’s limitations, and starting communication with those around them, and these were seen as important factors in participants gaining improvements in their day-to-day lives. Taylor (2006) stated that it is important to help chronically ill patients realize and manage role changes, accept new limitations, and embrace other qualities and strengths. Risdon, Eccleston, Crombez, and McCracken (2003) found that one of the keys to living with pain was acceptance. Factors contributing to this included taking control, empowerment, and accepting loss of self. The participants seemed to have gained acceptance of their changes through identification and understanding during the group process. CBT aims to change a person’s behavior by changing thought patterns and experiences around a phenomenon (Wilhelmsen, 1997), which naturally includes loss. Chronic pain is a complex phenomenon in which several biopsychosocial aspects are involved. To handle such aspects, the present study emphasized that the connection between thoughts, feelings, and behaviors was of importance in moving participants toward acceptance of their altered life situation. Processing losses, as achieved through pain management groups, seems to cause awareness of the loss and enables patients to search for new valuable life goals. Several studies have indicated that the cognitive-behavioral approach is beneficial for patients suffering from chronic pain (Aggarwal, Tickle, Javidi, & Peters, 2010). Group delivery of CBT is effective because it gives participants the opportunity to meet others with similar experience and feelings, while at the same time they are confronted with their own thoughts and actions (Keefe, Beupre, Gil, Rumble, & Aspnes, 2002), as shown in the present study. It is reasonable to assume that nonspecific effects of such group approaches, such as being in a group and group climate, may constitute additional explanations to the experiences of loss and suffering (NewthonJohn & Geddes, 2008). Overall, the participants were positively surprised with the management program. All identified losses and learned the importance of addressing and
Experiences of Loss in Chronic Pain
processing these losses. Some experienced more benefits than others, and although several regretted the lack of follow-up after the course, they still found the program to have been useful. Methodologic Considerations Interviewing participants about something as personal as loss is a challenge and may lead to possible withholding of personal information. However, the descriptions in this study are extensive and detailed, covering several aspects of the phenomena studied. Validation of the study was obtained through three contexts of interpretation using Kvale and Brinkmann’s method (2009). The self-understanding level was validated through member validation between the interviewer and each participant. The quality of data and results of analysis are highly dependent on the skills of the interviewer and the rigor of the analysis. The critical commonsense and theoretic understandings were validated by coworkers individually analyzing the empirical material before reaching a consensus. Because the findings point to the synergies among several components
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in the program, it is difficult to isolate the effects of a single component (Morley &Wiliams, 2002).The authors suggest that transferability of the findings may be relevant to other patient rehabilitation groups in similar situations.
CONCLUSION Results from this study show how several losses caused by chronic pain could have an impact on the entire existence of patients living with chronic pain. Findings indicate that it is valuable to address loss through a CBT-based group to initiate changes in the lives of patients with chronic pain. Group climate, social support, and homework tasks seem to be important contributing factors. The conscious use of CBT-based elements, i.e., changing behavior by changing thoughts and feelings, in the pain management group seemed to help them processing the losses through new insight and understanding. Failure to address losses may result in patients obtaining few of the benefits that could be gained from pain management groups.
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Kvale, S., & Brinkmann, S. (2009). Interviews: Learning the craft of qualitative research interviewing. Los Angeles: Sage. Lyons, R., & Sullivan, M. (1998). A relationship perspective. In J. H. Harvey (Ed.), Perspectives on loss: A sourcebook. Philadelphia: Brunner/Mazel. MacKenzie, K. R. (1990). Introduction to time-limited group psychotherapy. Washington: American Psychiatric Press. Mead, G. H. (2005). Sindet, selvet og samfundet: Fra et socialbehavioristisk standpunkt. [Mind, self and society: from a social behaviouristic point of view.]. Copenhagen: Akademisk Forl. Miller, E. D., & Omarzu, J. (1998). New directions in loss research. In J. H. Harvey (Ed.), Perspectives on loss: A sourcebook. Philadelphia: Brunner/Mazel. Morley, S., & Williams, A. C. (2002). Conduction and evaluating treatment outcome studies. In D. C. Turk, & R. J. Gatchel (Eds.), Psychological approaches to pain management: A practitioner’s handbook, (2nd ed.) (pp. 52–60) New York: Guilford Press. Newton-John, T. R., & Geddes, J. (2008). The nonspecific effects of group-based cognitive-behavioral treatment of chronic pain. Chronic Illness, 4, 199–208. doi:10.1177/ 1742395308091868. Øiestad, G. (2009). Selvfølelsen. [Self-esteem.]. Oslo: Gyldendal. Risdon, A., Eccleston, C., Crombez, G., & McCracken, L. (2003). How can we learn to live with pain? A Q-methodological analysis of the diverse understandings of acceptance of chronic pain. Social Science & Medicine, 56(2), 375–386. doi:10.1016/s0277-9536(02)00043-6. Roy, R. (2001). Old age, pain, and loss. Topics in Geriatric Rehabilitation, 16(3), 66–76. Roy, R. (2004). Chronic pain, loss, and suffering. Toronto: University of Toronto Press. Roy, R. (2008). Psychosocial interventions for chronic pain: In search of evidence. New York: Springer. Rustøen, T., Wahl, A. K., Hanestad, B. R., Lerdal, A., Paul, S., & Miaskowski, C. (2004). Gender differences
in chronic pain–findings from a population-based study ofNorwegian adults. Pain Management Nursing, 5(3), 105–117. doi:10.1016/j.pmn.2004.01.004. Schibbye, A. L. L. (2009). Relasjoner: Et dialektisk perspektiv p a eksistensiell og psykodynamisk psykoterapi. [Relations: A dialectic perspective on existential psychodynamic psychotherapy.]. Oslo: Universitetsforlaget. Smith, R. (1998). Impact of migraine on the family. Headache, 38, 424–426. doi:10.1046/j.1526-4610.1998. 3806423.x. Taylor, R. R. (2006). Cognitive behavioral therapy for chronic illness and disability. New York: Springer. Thorn, B. E., & Kuhadja, M. C. (2006). Group cognitive therapy for chronic pain. Journal of Clinical Psychology: In Session, 62(11), 1355–1366. doi:10.1002/ jclp.20315. Turk, D. C. (2002). A cognitive-behavioral perspective on treatment of chronic pain patients. In D. C. Turk, & R. J. Gatchel (Eds.), Psychological approaches to pain manangement: A practitioner’s handbook, (2nd ed.) New York: Guilford Press. Turk, D. C. (2003). Cognitive-behavioral approach to the treatment of chronic pain patients. Regional Anesthesia and Pain Medicine, 28(6), 573–579. doi:10.1016/ s1098-7339(03)00392-4. Walker, C. (2010). Ruptured identities: Leaving work because chronic illness. International Journal of Health Services, 40(4), 629–643. doi:10.2190/HS.40.4.d. Walker, J., Sofaer, B., & Holloway, I. (2006). The experience of chronic back pain: Accounts of loss in those seeking help from pain clinics. European Journal of Pain, 10(3), 199–207. doi:10.1016/j.ejpain.2005.03.007. White, S., & Seibold, C. (2008). Walk a mile in my shoes: An auto-ethnographic study. Contemporary Nurse: A Journal for the Australian Nursing Profession, 30(1), 57–68. doi:10.5172/conu.673.30.1.57. Wilhelmsen, I. (1997). Hypokondri og kognitiv terapi. [Hypochondria and cognitive therapy.]. Oslo: Pax.
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Appendix A: Interview Guide Identification of Loss: Which experiences could be explored as loss? If you think about your life before and after the onset of the chronic pain, what will you say is different regarding: —Relations to spouse/friend —Self-esteem —Social network —Work —Thoughts about the future —Control over own destiny No identification of loss? —Is there anything in your life right now you will describe as a loss? —What does loss mean to you?
Group Therapy: How can a CBT-based pain management group help them process such losses? What has changed in your everyday life after participating in the pain management groups? —Any situations you now react different to? Do you have an example? Which elements, connected to the group process, was positive/negative to you? —Group climate? —Methods used? —Which relationship did you develop to the others in the group? —New reflections after participating in the group? Any supplements to the themes we have covered?
Appendix B: Content of the Pain Management Program Meeting 1 2 3 4 5 6 7 8 9 10
Establishing the group. Develop goals. Physical activity and pain. Develop own plan for activity. Pain as a complex phenomenon. Awareness of factors increasing/decreasing pain. Muscle tension, relaxation and pain. Practice in relaxation techniques. Coping and pain. Awareness of coping strategies and alternative ways of coping. Self-esteem, social network, and pain. Awareness of self-esteem and social network and alternative ways of behaving. Thoughts, feelings, and behavior and how they relate to each other. Communication. Self-help. Awareness of important factors in communication. Nutrition and pain. Awareness of how nutrition can influence pain. Repetition, main goals, basic assumptions.
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From the Department of Health Studies, Faculty of Social Science, University of Stavanger, Stavanger, Norway. Address correspondence to Cecilie Haraldseid, MSc, Institutt for Helsefag University of Stavanger, 4036 Stavanger, Norway. E-mail: cecilie. [email protected] Received November 21, 2011; Revised April 13, 2012; Accepted April 17, 2012. 1524-9042/$36.00 Ó 2014 by the American Society for Pain Management Nursing doi:10.1016/j.pmn.2012.04.004
Cecilie Haraldseid, MSc, Elin Dysvik, PhD, and Bodil Furnes, PhD
ABSTRACT:
Chronic pain has been found to cause significant losses in the lives of those who experience it. To improve their life situation, it is important to understand the impact of these losses and manage them effectively. The aim of this study was twofold. We wanted to investigate which phenomena in the lives of patients with chronic pain could be described as experiences of loss, and whether a cognitive-behavioral therapy (CBT)–based group approach could help them process such losses. A qualitative approach based on semistructured interviews with six patients was chosen to investigate the experiences of patients with chronic pain. The findings in this study indicate that the patients experienced several losses: loss of ability to engage in meaningful activities, loss of relations with others, and loss of self. The experience of loss in their life situation can be difficult for them to deal with and creates a need for support and guidance. The study indicates that participation in a CBT-based group that focuses on processing these losses can be beneficial in helping patients identify and accept the losses and changes they have experienced, and thereby change their behavior toward a meaningful life despite their chronic pain. Failure to address these losses may result in patients obtaining few of the benefits that could be gained from pain management groups. Because the findings point to the synergies among several components in the program, it is difficult to isolate the effects of a single component. The conscious use of CBT-based elements, i.e., changing behavior by changing thoughts and feelings, in the pain management group seemed to help them to process the losses through new insight and understanding. Ó 2014 by the American Society for Pain Management Nursing
Pain Management Nursing, Vol 15, No 1 (March), 2014: pp 12-21
Experiences of Loss in Chronic Pain
In Norway, chronic pain affects 30% of the adult population (Breivik, Collett, Ventafridda, Cohen, & Gallacher, 2006), an incidence nearly double that of neighboring European countries (Rustøen, Wahl, Hanestad, Lerdal, Paul, & Miaskowski, 2004). Patients with chronic pain experience considerable losses as a result of the multiple impacts it has on several aspects of their lives (Roy, 2008). The experience of loss is universal to human life. During the life span we experience losses of different types and magnitude, and perhaps death can be seen as the ultimate loss (Miller & Omarzu, 1998). Loss may vary from person to person and is defined individually (Harvey, 2000). Miller and Omarzu (1998) defined loss as life events or changes that can result in someone being or feeling deprived of something valuable. Chronic pain is seen as a state with the potential to leave a person feeling deprived of what he or she values because of compromises or losses (Roy, 2008). Living with chronic pain has been found to cause losses in different aspects of life (Gatchel, Adams, Polatin, & Kishino, 2002; Walker, Sofaer, & Holloway, 2006) and these losses potentially change how patients with chronic pain think of and perceive their lived world. Researchers emphasize that it is important to address loss in all rehabilitation programs to ensure compassionate treatment for patients with chronic pain (Gatchel et al., 2002). Recent findings suggest that patients who suffer from chronic nonmalignant pain experience grief related to loss similar to the grief caused by death (Furnes & Dysvik, 2010a); while Harvey (2002) states that the aim of dealing with grief should be to learn to live with the loss. Treatment options for patients with chronic pain should therefore help patients adjust to their new life situation by addressing loss as a specific experience (Furnes & Dysvik, 2010a). However, there are few reported intervention strategies and literature on the topic is scarce (Roy, 2001). Pain is both a sensation and an emotional experience that includes the individual’s thoughts and feelings (Turk, 2003). Living with pain influences both well-being and mental and physical performance. Basler, Jakle, and Kroner-Herwig (1997) argued that a cognitive-behavioral therapy (CBT)–based treatment could be beneficial for patients experiencing chronic pain because it takes into consideration that chronic pain is a multifaceted phenomenon, not merely a neurophysiologic state. CBT aims to change behavior through changing a person’s thoughts and feelings, based on the belief that people themselves are instruments in developing and maintaining maladaptive features (Turk, 2002). According to Furnes and Dysvik (2010a), research and practice that consider losses in the lives of patients with chronic pain will be valuable.
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Research is therefore needed into the benefits of a CBTbased pain management group that addresses loss for patients with chronic pain. Based on this background, the present study’s aim was twofold. We wanted to investigate which phenomena in the lives of patients with chronic pain could be described as experiences of loss, and whether a CBT-based group approach could help them to process such losses.
METHOD A phenomenologic approach with semistructured interviews (Appendix A) was used to explore the lived experience of patients living with chronic pain (Kvale, 2006). The study was conducted with six patients suffering from chronic pain who had completed an 8-week CBT-based pain management program. (Appendix B) Interviews were conducted 6 months after completion of the program to give participants the opportunity to reflect consciously on their losses and decide whether the pain management program had helped with the processing of them. Participants Six participants were recruited through a learning and coping center at a university hospital in Norway as part of a greater study. They were all members of one pain management group and had taken part in an ongoing rehabilitation program. Recruitment was done in collaboration with the leaders of the group who initiated contact with potential participants. To be assessed for group participation, the participants underwent faceto-face interviews by the nurses at the learning and coping center before inclusion. Inclusion criteria for participation in the pain management program were set before the study. They included age 22-65 years, not affected by major mental disorder or serious medical conditions, medical investigation and/or treatment completed, motivated to participate in an active rehabilitation program, assessed as suitable for group participation, and able to write and speak fluent Norwegian. Specific criteria were added for those who participated in the present study: completion of the 8-week program, attended follow-up at 6 months, and willing to give informed consent. The participants were three men and three women with an average age of 43 years (range 32-55 years). Only one was employed at the time of the interviews. Five had children, and four were living in relationships. Data Collection Interviews lasted 40-60 minutes and were conducted in the learning and coping center. The semistructured interview guide was designed to capture experiences of
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TABLE 1. Example of Three Interpretation Levels Self-Understanding Don’t want to go out with pain, loved traveling, took annual trips, sad not being able to travel anymore. Hold ‘‘it’’ on the inside, put makeup on, twinkle in my eyes, collected energy for three days, finally make it, hope many can see how healthy you look. Not a typical love relationship, only have children together, that’s how it has become Everyone else works, then the loneliness came, I had to be home, I lost my network.
Common-Sense Understanding
Theoretic Understanding
Loss of ability to engage in meaningful activities
Development of self—Mead (2005)
Loss in relation to others
Recognition of others—Schibbye (2009)
Loss of self
Development of self—Mead (2005)
loss in the lives of chronic pain patients and to investigate whether a CBT-based group approach had helped them process such losses. Themes that were covered included social networks, work situation, self-esteem, feelings of control over own destiny, thoughts about the future, and experiences from the group participation. Data Analysis All interviews were recorded and transcribed by the interviewer within a day of the interview. The transcribed interviews were analyzed with the use of Kvale and Brinkmann’s (2009) qualitative research method with three levels of interpretation (Table 1). The first step, referred to as subjects’ ‘‘self-understanding,’’ entailed reading through each transcript several times to get an impression of what was being said. Meaning units were extracted from the text and organized under different preliminary themes. The meaning units were then condensed and given codes. In the second step, critical common-sense understanding was used to add a reasonable assumption of what was being said to the participants’ statements. The codes were then labeled and organized under new themes, and the themes were illuminated by theory. The third step, theoretic understanding, enables the researcher to interpret the data within a theoretic frame (Table 2). Ethical Consideration Ethical approval was obtained from the Regional Committee for Medical and Health Research Ethics. Each participant received written information about the study by mail, including information about their right to withdraw from the study at any point without any negative consequences. Signed informed consent forms were handed to the group leader by those who wanted to participate.
The participants’ identities were then revealed to the author, who contacted them to schedule interviews.
FINDINGS In this section experiences of loss followed by experiences from group participation are discussed.
Experience of Loss The first part of the interview guide focused on different experiences in the lives of participants with chronic pain that could be understood as loss. The empirical material indicated that the patients mainly experienced loss in connection with three different aspects of life: loss of abilities to engage in meaningful activities, loss of relations with others, and loss of self. Loss of Ability to Engage in Meaningful Activities. The central finding was loss of work, social activities, physical activities, and hobbies. As a result of chronic pain, participation in these activities was no longer possible, which has therefore been understood as loss. As a direct result of the chronic pain, most of the patients had to give up their work, because their physical limitations rendered them incapable of fulfilling workplace demands. The loss of employment influenced them highly, because it was seen as an important part of their life: ‘‘I miss it tremendously! The work was my life! That’s what mattered: a kind of cornerstone.’’ Some of them felt forced out of their workplaces as a direct result of frequent periods of sick leave: ‘‘It was exactly the work I wanted . so it was an extra big loss when I was asked to leave, due to excessive amounts of sick leave.’’
Experiences of Loss in Chronic Pain
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TABLE 2. Illustration of the Analysis Process
Their loss of employment was in no way wanted and as a consequence they were forced to receive social security or welfare: ‘‘So now I receive social security and I can not work, something I wish from the bottom of my heart that I could.’’ The reduced income created economic restrictions that kept them from participating in social activities: ‘‘you can not afford this and that . so those things disappear, and then there are more and more people that pull away, and you are left with few friends, very few.’’ Hobbies and previous physical activities were also affected. One of the participants had loved traveling, but this was now impossible because of the difficulty of spending prolonged time in one position. Playing soccer, knitting, fishing, and participation in mountain hikes were other activities that were now difficult or impossible for them. Loss of Relations with Others. Loss of close relationships with spouses, children, parents, and friends was seen as the greatest loss. Participants often found that others did not understand them or questioned their behavior and decisions. In turn, participants refrained from telling others how they felt, because of not wanting to complain, trying to keep up appearances, and the need to protect both themselves and others: ‘‘I’ve learned to keep my mouth shut, not to talk about it. It serves no purpose.’’ This poor communication often seemed to cause misunderstandings, distance, and conflicts in their close relations. Participants lacked the capacity they once had to contribute and join in as spouses, friends, daughters, sons, and parents: ‘‘With the kids, I might just join
in on that one activity, not able to be there all the time, but just at that one thing.’’ Changes caused by chronic pain especially affected relationships with their spouses: ‘‘It’s not the typical love relationship I would say. It’s more the fact that we have children together . that’s just how it has become.’’ Chronic pain influenced their moods, their ability to work, and their opportunities to participate and contribute, resulting in reduced social contact. The shift from their previous active lifestyle to a more isolating existence caused them to lose part of their network: ‘‘What I miss the most may not be what I did there, but the people around me.’’ Loss of Self The main areas of attention regarding loss of self were related to how they had changed as persons and their thoughts about themselves. Some of them experienced major alterations in cognitive function because their ability to concentrate and short-term memory were affected. Problems with concentration and memory affected both work and self-esteem: ‘‘I worked, but I took three times longer than I used to . It’s just not how I work. I don’t want to be sitting there doing mumbo-jumbo.’’ Others experienced poor sleep quality, reduced appetite, and excessive sensitivity to touch. Some felt bad tempered, became easily irritated or angry, and experienced frequent altered moods. One of them said, ‘‘I get really angry when things don’t work . when I can not do stuff and I am tired and exhausted. I can feel I have a lot of anger.’’ They
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also reported changes in their physical ability: ‘‘It’s frustrating when you no longer can do what you are used to.’’ The changes in their lives caused by the chronic pain led to changes in their feelings about themselves and their identity: ‘‘I lost that identity, because it means a lot when you have studied for a long time and finally start working . that broke me down.’’ Feelings of being misbelieved and not understood by others often triggered the need to hide behind a mask. It was often important for them to present themselves as ‘‘normal,’’ not showing the world around them how they really felt: ‘‘It’s because of your selfworth, who you are, and who you want to show it to.’’ The participants often felt judged and stigmatized by the people in their surroundings, which seemed to influence how they perceived themselves. The chronic pain had also caused the participants to believe they were no longer fulfilling their commitments as spouses, friends, children, and parents: ‘‘I don’t feel I manage to be a good-enough mother, even though my daughter reassures me I am, I don’t feel like it.’’ Group Participation Experiences The second part of the interview was designed to show whether elements of a CBT-based group had helped them process the losses they had experienced. The participants emphasized the climate of warmth and social support within the group as important elements of group participation. In addition, they identified homework tasks that included self-help education material as important. Group Climate. Referring to the group climate, several of the participants pointed out fellowship, understanding, and trust as important elements in creating a good group atmosphere where they could share their feelings. One of the participants said, ‘‘We soon gained trust in each other when it was totally clear that what was being said in the group, remained in the group.’’ Trusting each other enabled them to share their life stories. When sharing their feelings it soon became clear that others also experienced similar problems: ‘‘Most of the group participants dug deep and shared, there were a lot of tough stories, and then you see you are not the only one to struggle.’’ Through sharing their feelings, they discovered that others had similar problems, and this created fellowship, understanding, and acceptance. Social Support. The importance of social support emerged without any specific questions from the interviewer. All participants talked about the importance of having someone with similar experiences who understood and supported them. When revealing their
problems, common experiences were illuminated: ‘‘I recognized myself in everything he said! Everything! It was like: ‘Yes! Yes! Yes!’’’ According to this participant it was easier to understand each other when you knew you were talking the same ‘‘language’’ and because you knew you were understood: ‘‘You feel a companionship, not to whine or complain, but you feel that people know what you mean when you say you have not been able to get into the shower today. People know what it means.’’ Homework Tasks. In addition to being a part of a group, the participants were given homework tasks during the program that they now used in their everyday life. Relaxation techniques and therapeutic writing were mentioned particularly as effective techniques by all of the participants. One of them described the importance of relaxation techniques like this: ‘‘You manage your pain better. You know what to do now! If it starts to reach the top.’’ The use of writing as a processing tool was described as tough but rewarding work. One of the women described it like this: ‘‘To dare being honest to yourself . I had to swallow a few camels there. But I learned a lot.’’ Making participants write down their thoughts and feelings led to reflection about different situations and enabled them to identify problem areas in their everyday lives: ‘‘After you had written it down, you gained a new focus, you shared with others, and you got advice and guidance.’’
DISCUSSION The aim of the study was twofold, to investigate phenomena in the lives of patients with chronic pain that could be explored as experiences of loss, and whether a CBT-based group approach could help them process such losses. The discussion follows the same sequence as the Findings section. Experiences of Loss The findings in this study indicate multiple losses in the lives of patients suffering from chronic pain. Loss of ability to engage in meaningful activities, loss of relations with others, and loss of self have also been found in earlier research investigating experiences of patients with chronic pain (Walker et al., 2006). Other previously reported themes include not being understood by those around them and feeling changed as a person (White & Seibold, 2008), both of which were found in our study. A major finding in the present study was that all participants lost their ability to engage in activities that were important and meaningful for them. This seemed to influence their well-being and caused them
Experiences of Loss in Chronic Pain
to experience loss. Schibbye (2009) states that the person we are depends on who the people around us allow us to be. Personhood is created in a context of social relations and we change roles depending on the situation and the people around us. Roles and identity shift when chronic pain prevents someone from engaging in what was previously taken for granted (Henare, 2003). Abraıdo-Lanza and Revenson (1996) found that important role identities contribute to competence, selfesteem, and self-efficiency. Loss of these roles through chronic illness therefore had a devastating impact on psychologic well-being. Compared with the present study, those findings reflect the participants’ experiences of how changes in their ability to undertake meaningful activities affected their perceived important roles and ultimately caused them to experience a sense of loss, influencing their well-being. Participants reported that loss of employment contributed to loss of identity, meaning, and self- worth, leaving them feeling unwanted by society. According to Roy (2004), work is one factor that appears to define identity, because it ranks people in social positions and gives them specific roles. In addition, he claims that loss of work includes the risk of losing social interactions and friends. Walker (2010) supports these findings; he found that loss of employment not only affects income, but also social interaction and chosen identity, forcing people to adapt to a deviant role in society. The loss of meaningful activities thereby seems to influence their lives, causing them to lose old roles and being forced into new, unwanted roles. All participants described various problems in their relationships with others. Several participants found relations with children, spouses, and parents to be most difficult. They described how they refrained from explaining about their pain because their feelings were not understood by those around them. Schibbye (2009) states that acknowledgement may be lost if two acknowledging subjects are not able to switch imaginary roles and understand the opposite person’s view. Interpersonal relations may suffer from the lack of mutual understanding, which causes the relationship to come to a halt. The inability of the pain sufferers and their significant others to see things from each other’s perspectives could therefore explain aspects of why the participants had refrained from communicating, leading to problems in the participants’ relations. Participants indicated that they, and especially their relations within the family, had been influenced by their inability to participate and contribute as before. When Kryst and Scherl (1994) investigated the social and personal impacts of headache in Kentucky, they found that efficiency at work, attendance at
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social events, capacity for planning ahead, relations with friends, and self-image were all reported to be affected. Smith (1998) also found that a majority of migraine sufferers reported their pain as having significant impact on their families. According to Lyons and Sullivan (1998), illness and disability never occur in a vacuum for the individual alone, but exist in a context of social relationships, and interpersonal losses are therefore inevitable. We are born into a community, constantly have to relate to the people around us, and therefore ‘‘relations to others are both the most important and the hardest for us,’’ according to Øiestad (2009, p. 36). The loss of their ability to participate and contribute therefore caused loss of relations with their close family. In addition to their inability to engage in meaningful activities and loss of their relations with others, the present study indicates that participants experienced a loss of self. The personal changes caused by chronic pain seemed to make them become different in mood, thoughts, behavior, and feelings of self. Identity is defined as something that comprises who we are and our characteristics as unique persons (Collins Dictionary, 1979). Our self-definition is based on our perception of what and who we believe we are. We experience a great deal of well-being through our ability to meet the demands and obligations placed on us as workers and spouses (Roy, 2004), an ability that can be lost because of chronic pain. Facing chronic pain does not relieve someone of their role as a spouse, but it may make the fulfillment of its obligations harder (Roy, 2004). Participants’ personal changes had altered the characteristics that made up who they were, and this seemed to affect their ability both to fulfill roles and to make changes, leading to a sense of loss of self. Loss of self also included the aspect of changed thoughts about themselves. Participants’ thoughts consisted of how they were perceived by others and how they perceived themselves. Christiansen (1999) described identity as a composed definition of self, and argued that identities are socially interconnected. Because identity is shaped through interaction with others, loss of identity is closely connected to losses in interpersonal relations. This pattern is circular; if a person changes it could affect the lives of those they are involved with (Kelley, 1998). Findings in the present study could therefore indicate that loss of relations influences participants’ feelings of self, and this is consistent with Mead’s (2005) view that the individual perception of self does not occur directly, but occurs as a reflection of the distinct perspectives of other members of his or her social group. Gatchel et al. (2002) reports that negative social perceptions contribute to distress and enhance difficulties in managing
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life situations. A negative perception of self and assumed negative perceptions from others will therefore have the potential to affect the person’s feelings of self. Roy (2008) also states that social roles constitute the main center of one’s identity. The inability to engage in meaningful activities and loss of relations ultimately seemed to influence participants’ identity and feelings of self: ‘‘It becomes a struggle wherever you turn.’’ Henare (2003) stated that one’s roles, activities, occupation, and tasks reflect one as a person. Losing the ability to participate in meaningful activities and loss of relations with others because of chronic pain could make sufferers begin to lose their sense of self. There appears to be, therefore, a close relationship between these three aspects that were previously considered separately: the loss in ability to engage in meaningful activities, loss of relations, and loss of self. Group Participation Experiences The second aim of the present study was to explore whether the CBT-based group approach helped participants process the losses they had experienced. The study indicated that group climate and social support, together with homework tasks, had been essential in identifying problem areas and managing everyday life. The group climate was important to participants, because it created a trusting environment where they could disclose themselves and find understanding and support from people with shared circumstances. This finding is supported by Thorn and Kuhadja (2006), who stated that group formats fulfill a supportive functioning, allowing patients to share their inner selves to others with similar circumstances. The establishment of a positive group climate, therefore, created a fertile environment for disclosure of their thoughts, which seemed to help them identify losses and problems they had in common with others in the group. MacKenzie (1990) explains that self-disclosure is at the heart of group participation because it is essential for identifying problems and learning from each other. The group climate seems to be important, therefore, to enable self-disclosure. The discovery of common losses seemed to create understanding and social support in the group. Sharing stories also made participants realize that they needed to communicate with those around them and tell them how they felt and what they needed. Communication and a shift in perspective helped them to think differently about their situation and gave them the opportunity to work on their problems. They also realized that change depended on their own efforts and active participation. If they wanted to change, they had to do the work themselves. The combination of good group climate and social support seemed to help them accept and acknowledge their losses and problems, making them
receptive to change. MacKenzie (1990) further states that self-disclosure creates a forum for modeling and learning from each other that can lead to changed behavior. Homework included therapeutic writing around specific themes. This seemed to help participants to reflect on their thoughts, put their problems into focus, and identify losses in their lives. Several findings emphasize the importance of writing as a tool in the recovery process after loss experiences for adapting to the new life situation (Furnes, 2008; Furnes & Dysvik, 2010b). Reported changes as a result of group participation included gaining a new perspective, acknowledging one’s limitations, and starting communication with those around them, and these were seen as important factors in participants gaining improvements in their day-to-day lives. Taylor (2006) stated that it is important to help chronically ill patients realize and manage role changes, accept new limitations, and embrace other qualities and strengths. Risdon, Eccleston, Crombez, and McCracken (2003) found that one of the keys to living with pain was acceptance. Factors contributing to this included taking control, empowerment, and accepting loss of self. The participants seemed to have gained acceptance of their changes through identification and understanding during the group process. CBT aims to change a person’s behavior by changing thought patterns and experiences around a phenomenon (Wilhelmsen, 1997), which naturally includes loss. Chronic pain is a complex phenomenon in which several biopsychosocial aspects are involved. To handle such aspects, the present study emphasized that the connection between thoughts, feelings, and behaviors was of importance in moving participants toward acceptance of their altered life situation. Processing losses, as achieved through pain management groups, seems to cause awareness of the loss and enables patients to search for new valuable life goals. Several studies have indicated that the cognitive-behavioral approach is beneficial for patients suffering from chronic pain (Aggarwal, Tickle, Javidi, & Peters, 2010). Group delivery of CBT is effective because it gives participants the opportunity to meet others with similar experience and feelings, while at the same time they are confronted with their own thoughts and actions (Keefe, Beupre, Gil, Rumble, & Aspnes, 2002), as shown in the present study. It is reasonable to assume that nonspecific effects of such group approaches, such as being in a group and group climate, may constitute additional explanations to the experiences of loss and suffering (NewthonJohn & Geddes, 2008). Overall, the participants were positively surprised with the management program. All identified losses and learned the importance of addressing and
Experiences of Loss in Chronic Pain
processing these losses. Some experienced more benefits than others, and although several regretted the lack of follow-up after the course, they still found the program to have been useful. Methodologic Considerations Interviewing participants about something as personal as loss is a challenge and may lead to possible withholding of personal information. However, the descriptions in this study are extensive and detailed, covering several aspects of the phenomena studied. Validation of the study was obtained through three contexts of interpretation using Kvale and Brinkmann’s method (2009). The self-understanding level was validated through member validation between the interviewer and each participant. The quality of data and results of analysis are highly dependent on the skills of the interviewer and the rigor of the analysis. The critical commonsense and theoretic understandings were validated by coworkers individually analyzing the empirical material before reaching a consensus. Because the findings point to the synergies among several components
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in the program, it is difficult to isolate the effects of a single component (Morley &Wiliams, 2002).The authors suggest that transferability of the findings may be relevant to other patient rehabilitation groups in similar situations.
CONCLUSION Results from this study show how several losses caused by chronic pain could have an impact on the entire existence of patients living with chronic pain. Findings indicate that it is valuable to address loss through a CBT-based group to initiate changes in the lives of patients with chronic pain. Group climate, social support, and homework tasks seem to be important contributing factors. The conscious use of CBT-based elements, i.e., changing behavior by changing thoughts and feelings, in the pain management group seemed to help them processing the losses through new insight and understanding. Failure to address losses may result in patients obtaining few of the benefits that could be gained from pain management groups.
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Experiences of Loss in Chronic Pain
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Appendix A: Interview Guide Identification of Loss: Which experiences could be explored as loss? If you think about your life before and after the onset of the chronic pain, what will you say is different regarding: —Relations to spouse/friend —Self-esteem —Social network —Work —Thoughts about the future —Control over own destiny No identification of loss? —Is there anything in your life right now you will describe as a loss? —What does loss mean to you?
Group Therapy: How can a CBT-based pain management group help them process such losses? What has changed in your everyday life after participating in the pain management groups? —Any situations you now react different to? Do you have an example? Which elements, connected to the group process, was positive/negative to you? —Group climate? —Methods used? —Which relationship did you develop to the others in the group? —New reflections after participating in the group? Any supplements to the themes we have covered?
Appendix B: Content of the Pain Management Program Meeting 1 2 3 4 5 6 7 8 9 10
Establishing the group. Develop goals. Physical activity and pain. Develop own plan for activity. Pain as a complex phenomenon. Awareness of factors increasing/decreasing pain. Muscle tension, relaxation and pain. Practice in relaxation techniques. Coping and pain. Awareness of coping strategies and alternative ways of coping. Self-esteem, social network, and pain. Awareness of self-esteem and social network and alternative ways of behaving. Thoughts, feelings, and behavior and how they relate to each other. Communication. Self-help. Awareness of important factors in communication. Nutrition and pain. Awareness of how nutrition can influence pain. Repetition, main goals, basic assumptions.
