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The Development and Impact of a Chronic Pain Support Group

A Qualitative and Quantitative Study

      Abstract

      To study the process of establishment, and evaluate the outcome of participation, in a self-help support group for people with chronic nonmalignant pain, members of a newly-established, consumer-led group participated in two interviews 5 months apart and a researcher observed group meetings. Participants reported significant benefits from participating in the group. They had a significant increase in functional ability and activity, and reported decreased recourse to health professionals, particularly family physicians. This study indicates that pain support groups can play a valuable role for people in pain, assisting with support and rehabilitation, and meeting needs that health professionals are often not appropriate or able to provide.

      Keywords

      Introduction

      Support groups can provide an opportunity for people with a common problem to come together, share their experiences and concerns, and learn in a context that is controlled by the participants and requires little or no professional input.
      • Jacobs M.K
      • Goodman F
      Psychology and self-help groups.
      • Borkman T
      Mutual and self-help groups strengthening the selectively unsupportive personal and community networks of their members.
      There is a vast literature about support groups for many health problems and related difficulties, but relatively little has been written about support groups for people with chronic nonmalignant pain.
      • Roy R
      There is room for debate about the impact of pain support groups, with both positive and negative outcomes being possible. The positive effect of chronic pain support groups has been attested both by participants and professionals.
      • Roy R
      • Howell S.L
      A theoretical model for caring with women with chronic nonmalignant pain.
      • Montgomerie E
      Support groups for chronic pain in Auckland.
      • Lewis D.J
      • Frain K.A
      • Donelly M.H
      Chronic pain support group a program designed to facilitate coping.
      Support groups for people with specific chronic pain conditions such as headache
      • Klapper J
      • Stanton J
      • Seawell M
      The development of a support group organization for headache sufferers.
      and temporomandibular joint pain
      • Garro L.C
      • Stephenson K.A
      • Good B.J
      Chronic illness of the temporomandibular joints as experienced by support group members.
      have also been described. However, it is also possible that pain support groups could have a negative effect on participants. From a behavioral perspective, pain support groups may reinforce the maintenance of pain behaviors and pain-related dysfunction, and reinforce the assumption or maintenance of a sick role.
      • Fordyce W.E
      From a cognitive perspective, a group with a disempowering focus might, for example, engender a sense of helplessness in members, leading to adverse psychosocial and functional consequences. Considering the possibility of positive or negative outcomes, evaluation of the outcome of pain support groups and specification of the factors that promote a positive outcome for group members is warranted.
      • Roy R
      However, previous studies
      • Roy R
      • Howell S.L
      A theoretical model for caring with women with chronic nonmalignant pain.
      • Montgomerie E
      Support groups for chronic pain in Auckland.
      • Lewis D.J
      • Frain K.A
      • Donelly M.H
      Chronic pain support group a program designed to facilitate coping.
      with chronic pain groups have relied on retrospective report and evaluation and have not substantively assessed the process of group function.
      The establishment of a Pain Support Group (PSG) for people with chronic pain provided an opportunity to research the development, functioning, and impact of pain support groups. The study investigated the development and evolution of the PSG, documented group processes and activities, and evaluated the impact of the group, as perceived by group members (“participants”) and, where possible, their “significant others.” This paper primarily reports on qualitative and quantitative data pertaining to outcome and formative evaluation.
      • Patton M.Q

      Methods

      Subjects

      Thirteen group participants (77% female, mean age 53, age range 36–69, pain duration 2–40 years) completed the study. Participants predominantly reported low back pain, but often had concurrent pain in other body sites. Eleven (85%) of the participants had ceased full- or part-time employment subsequent to the onset of pain. Eight (62%) received some form of social security benefit. Nine participants (69%) lived with other people and four participants (31%) lived alone. Significant others of seven participants (six spouses, one daughter) were interviewed. In other cases a significant other refused to be interviewed, or the participant did not want their significant other interviewed.

      Group Activity

      The major activity of the PSG was monthly meetings lasting approximately 2 hours. Meetings were initially held in the morning but, due to member preference, subsequent meetings were held in the early afternoon. Initial meetings of the group had a formal meeting structure (with minutes, an agenda, etc.), but a more informal structure was adopted in later meetings. The informal structure consisted of an “ice-breaker” activity, followed by a speaker, then a social time with refreshments. In later sessions, the group ran an optional relaxation session prior to the start of the meeting.
      The “ice-breaker” used at the beginning of later meetings involved each participant having a maximum of 2 minutes to tell the group “the worst and the best thing that has happened to me since the last meeting.” The participant to speak next was handed a flower by the previous speaker. The participant who held the flower was the only one allowed to talk during their allotted time. This activity worked well to encourage participation by all attenders in later parts of the meeting, strengthen social relations within the group, allow some ventilation of concerns, and enhance the focus on positive issues and achievements. Most meetings had an invited speaker. Some invited speakers, including health professionals and people with expertise in disability, covered issues related to living with pain. Other speakers covered topics not related to pain but which might assist members to develop new skills, interests, or sources of life satisfaction. Non-pain-related topics included an update on driving rules and techniques, puppetry, and home security. Members were also given information on available exercise opportunities. Meetings concluded with refreshments and plenty of time for informal interaction between members and visitors.
      The group undertook other formal and informal activities in addition to the monthly meetings. A monthly newsletter that included information on upcoming activities, short articles about pain management, news from members, and other information, was distributed to members and interested others. Some members visited a pain support group in another town. Walks around local public gardens were organized. Emotional support was provided, often by telephone, for members and for people who inquired about the group. Contact was made with members experiencing particular difficulties. Committee members sought training in basic counseling techniques to assist with these calls. The group advertised widely through newspaper articles, radio interviews, and pamphlets that were left in public libraries and at health, disability, and compensation services.
      A small committee of people with pain took responsibility for the organization and operation of the group. This committee held separate monthly committee meetings. Health professionals, primarily a clinical psychologist (MS), were occasionally consulted for support, or for help with particular matters, but the group generally operated without professional input. The group leaders, consistent with advice from professionals, guided the group towards a positive focus on living as satisfying a life as possible with the pain. A few members felt the group should focus on giving people the opportunity to talk about their pain and treatment, but this was not the view of the majority.

      Study Procedure

      The study consisted of three phases. In the first phase (“initial interview”), participants undertook a semistructured interview and completed standardized measures as close to the time of first contact with the PSG as possible. The major subject areas covered in the interview included clinical and demographic information, standardized measures, present pain and health status, pain-related health service utilization in the last 3 months, knowledge and previous experience of support groups, expectations of the PSG, and social and family support. The interview sessions were taped and transcripts were analyzed by the inductive categorization form of content analysis.
      • Greene J.C
      • Whitmore E
      • Sappington H
      The craft of evaluation strategies for qualitative data analysis.
      Where possible, independent interviews were undertaken with a significant other of the person in pain. Major areas in this interview included basic demographics, the significant other’s perception of their caring role, changes in the family following the development of the pain problem, knowledge of support groups, and their expectations about PSG participation.
      In the second phase, a researcher (V.S.) attended five consecutive PSG meetings and six committee meetings over a 6-month period. The meetings were taped and transcribed for further analysis. Notes were also taken during meetings. V.S. participated in group activities as was appropriate, but was not a full member of the group and attended primarily as an observer.
      In the third phase (“follow-up interview”), participants undertook another interview approximately 5 months after the initial interview. The major topics covered in the follow-up interview included completion of standardized measures, present pain and health status, pain-related health service utilization in the last 3 months, experience of the PSG, benefits and negative impacts of contact with the PSG, and suggestions to improve the group. Repeat interviews with the significant others were also undertaken. The major topics covered in these interviews were their perception of the group activities, the impact on the person in pain (and their family members) of contact with the PSG, and suggestions for improvement.
      Quantitative analysis was performed on the standardized scales developed by Jamison et al.
      • Jamison R.N
      • Rudy T.E
      • Penzien D.B
      • Mosley T.H
      Cognitive-behavioral classifications of chronic pain replication and extension of empirically derived patient profiles.
      that measure four of the constructs of the Multidimensional Pain Inventory (MPI).
      • Keens R.D
      • Turk D.C
      • Rudy T.E
      The West Haven–Yale Multidimensional Pain Inventory (WHYMPI).
      Cluster analytic techniques have shown that these scales reliably replicated the pain patient taxonomy of the MPI, indicating that the scales measured similar constructs.
      • Jamison R.N
      • Rudy T.E
      • Penzien D.B
      • Mosley T.H
      Cognitive-behavioral classifications of chronic pain replication and extension of empirically derived patient profiles.
      The scales were: activity interference (functional disability), mood (affective distress), pain (intensity and affective response dimensions), and perceived interactions with family members. Data from the initial and follow-up interviews were compared using paired t-tests.
      Following completion of the study, findings and recommendations arising from the study were discussed with the PSG. To ensure the accuracy of interpretation of the qualitative data, the dissertation was read by interested PSG members, who gave feedback to the authors. Copies of this paper were also critiqued by group members prior to submission for publication.

      Results

      Member Profile at Initial Interview

      Pain Management Efforts. Ten participants (77%) used pain medication, ranging from mild analgesics to opioids. Seven of these 10 participants thought their medication was useful and effective. Participants described using or having used a number of alternative therapies, but satisfaction with these approaches was variable. Participants described a variety of coping techniques including exercise programs, acupressure, relaxation techniques, pool activities, and walking. Others described using pacing strategies, and cognitive strategies such as distraction for pain management.
      Existing Support Networks. All participants had relatives (spouse, parents, children, or grandchildren) living nearby. However, a majority of participants thought that they lacked support from family and friends, particularly for their pain problem. Even participants with close friends and family thought that their pain was poorly understood by others, and felt uncomfortable communicating about their pain. Less than half of the participants reported that there was someone from whom they could easily get support about their pain, and of these, only one nominated a family member as this support-giver. Pain-related support-givers were generally professionals (e.g., doctor, pain management clinic staff, counselor), or nonfamily friends. The participants’ perceptions of the supportiveness of their significant other differed substantially from the significant other’s perceptions. The significant others identified giving support as their major role, and identified their supportive contributions as helping, listening, and keeping life as close to normal as possible.
      Impact of Chronic Pain. Changes in family relationships and the emotional impact of chronic pain were the most commonly reported impacts of the onset of pain (both spontaneously reported by 62% of participants). Particularly troublesome was the increased dependency on their families and friends, and feeling “like a burden” on significant others. Participants believed that the pain had an equal or greater impact on their families than on themselves. Increased tension and conflict with partners was particularly noted. These factors were described as engendering feelings of being isolated and alone, and of lacking support. Most participants were involved in few social or community activities. This lack of formal social contact, generally attributed to their pain problem, increased their feeling of social isolation. Participants also reported substantial loss of significant life roles, including loss of employment, loss of independence, and distress at becoming financially dependent on others and/or on compensation systems. The majority described financial stress at the time of the study. Their financial position was described as “just adequate” by 54% and “very stretched” by 39% of participants. Significant others also indicated that the development of the pain had led to substantial changes in the family routine, roles, and activities.

      Expectations of the Pain Support Group

      Participants identified seeking new information on pain management as a major reason for joining the group. Participants wanted the opportunity to associate with and learn from others who experience similar problems. Being able to help each other was also a significant expectation. Participants identified social contact and friendship as another major reason for joining the PSG. Some participants wanted the group to act as a support network at times of particular difficulty. Only one member wanted the group to have a broader “advocacy” role, advocating for the rights of people in chronic pain at a system level (e.g., with national or local government, or with compensation agencies). Two people wanted the group to be a forum for discussing their individual pain problem and past treatment, but others did not wish this to be a major focus. Achieving resolution of this conflict took considerable time in some meetings. The participants’ expectations were consistent with those of the significant others. Only two significant others expressed interest in attending the group meetings. At the initial interview, few participants wanted their significant others to attend the meetings. However, at follow-up, several members believed that involvement in the PSG could help family members to better understand the situation of the person with pain.

      Outcome of Membership of Pain Support Group

      Qualitative Outcomes. In general, participants expressed satisfaction with the PSG. Some said it was “the most positive thing that had happened to me in a long time.” Nine participants (70%) reported that the group had helped them in their everyday life. Three of the remaining participants believed that the group did not directly help them because they were already coping well. These participants reported deriving satisfaction from helping others in the group. At follow-up, 12 of 13 participants commented that they had a positive experience with the PSG and were still members. The one person who had left the group had been a committee member, but found it difficult to work with other committee members. All participants and all of the significant others said that they would recommend group membership to other people in pain.
      Benefits of group membership closely paralleled the participants’ expectations at the beginning of the study. Gaining knowledge was perceived as a major benefit of membership. Information provided by health professionals and other speakers was rated as helpful, but information from discussion with other group members was seen as particularly important. Several participants felt that the group had assisted them in improving their adaptation to life with pain (e.g., “by just living with myself and living with pain, and coming to realize it is not the end of the world”). Participants described becoming aware of and seeking alternative methods of coping with pain following exposure to these techniques through the group. Group members also reported positive changes in behavior (including health behaviors) and increased motivation. Contact with other people in pain (e.g., “realizing that I am not alone”) was perceived as very helpful. Participants felt that fellow sufferers were more able to understand their experiences and difficulties than were family members or professionals. Other aspects of social support, such as a sense of belonging, the development of new friendships, the opportunity to help others, and taking pleasure in the achievements of other group members, were also seen as significant benefits. A typical comment was that the group filled a gap in services, providing support in a way that professionals did not. No adverse consequences of group membership were reported by the participants. When asked how the group could be improved, participants suggested enhancement of the telephone support network, more access to informational resources on pain and pain management, more social outings, and a higher public profile for the group.
      Quantitative Outcomes. Table 1 shows the results of the standardized measures at the beginning of the study (“initial”) and 5 months later (“follow-up”). The participants reported significantly less functional disability at follow-up than at the beginning of the study (t(12) = 2.68, P < 0.04). No significant changes over time were found in measures of pain (sensory or affective components), level of affective distress, or the supportiveness of family interactions.
      Table 1Pre- and Post-Measures for Pain Support Group Members
      All scales range 1–5. Larger score indicates worse disability/distress/dysfunction/pain in all cases.
      Initial interviewFollow-up
      M(SD)M(SD)
      Functional limitation4.30
      P < 0.05.
      (0.88)3.60
      P < 0.05.
      (0.86)
      Affective distress3.33(0.83)3.34(0.56)
      Supportive interactions3.75(0.94)3.79(1.21)
      Pain—sensory evaluation3.46(1.15)3.18(1.40)
      Pain—affective response3.50(0.94)3.35(1.18)
      a All scales range 1–5. Larger score indicates worse disability/distress/dysfunction/pain in all cases.
      b P < 0.05.
      Table 2 shows the participants’ pain-related contacts with health professionals in the 3 months prior to each interview. The participants reported contact with 21% fewer health care services in the 3 months prior to follow-up, compared with the period prior to the initial interview. This decrease was mostly due to a 50% decrease in reported pain-related contact with family practitioners. These findings may indicate that participants gained support from the group and sought support less from their family doctors than previously. This interpretation is supported by the finding that of the 10 people who saw their family doctor an average of once a month at the beginning of the study, only five (50%) believed that the treatment they received was helpful in reducing their pain.
      Table 2Health Services Involved in the Pain-Related Care of Participants Before and During Pain Support Group Participation
      The time period covered is the 3 months prior to the interview.
      Health serviceInitial NFollow-up N
      Individual medical practitioner
      Included family practitioners and specialists.
      126
      Multidisciplinary clinic45
      Psychologist43
      Other health care providers
      Included physical therapists, occupational therapists, and alternative health practitioners.
      45
      None34
      Total health services involved2419
      a The time period covered is the 3 months prior to the interview.
      b Included family practitioners and specialists.
      c Included physical therapists, occupational therapists, and alternative health practitioners.

      Discussion

      The present study reported on the development of a chronic pain support group and an evaluation of the outcomes of this group. While the sample consisted of participants from one fledgling pain support group, other groups are likely to meet similar challenges during formation and operation. Although data were not systematically gathered at the time, the second author’s experience with four other established or developing chronic pain support groups suggested that similar issues had arisen for these other groups. Interpretation of the quantitative data must be considered tentative due to the small sample size and the lack of a control group, but the quantitative and qualitative data consistently suggest that the participants experienced a clinically significant and worthwhile outcome.
      This study indicates that positive outcomes that were consistent with participants’ expectations were achieved. Benefits of group participation included additional education, exposure to new coping resources, enhanced adaptation to the challenges of chronic pain, improved health-related behaviors, increased functional activity, enhanced social networks, improved peer support, enhanced self-esteem, improved morale, and a more positive appraisal of difficulties. These benefits are consistent with the positive outcomes of support groups for a range of other health-related difficulties,
      • Borkman T
      Mutual and self-help groups strengthening the selectively unsupportive personal and community networks of their members.
      and for chronic pain.
      • Lewis D.J
      • Frain K.A
      • Donelly M.H
      Chronic pain support group a program designed to facilitate coping.
      This study reminds us that having a chronic pain condition can be a lonely experience. At the initial interview, even participants who described strong social networks reported feeling isolated, and lacking in support for dealing with their pain condition. This finding emphasized that general social support does not necessarily ensure receipt of effective pain-specific support. Pain-specific support may be difficult for the family to provide. This was demonstrated by the finding that participants perceived their family members as less supportive than the family members rated themselves. Families may lack the coping resources required to support a person in pain. Development of a pain problem by a family member may further erode the family’s intra- and interpersonal coping resources, and adversely affect family relationships and function.
      • Flor H
      • Turk D.C
      • Scholz O.B
      Impact of chronic pain on the spouse marital, emotional, and physical consequences, J.
      • Chun D.Y
      • Turner J.A
      • Romano J.M
      Children of chronic pain patients risk factors for maladjustment.
      Support can also be difficult for the family members to give in a way that both satisfies the person in pain and encourages decreased pain-related disability. Higher levels of family support have been related both to better adaptation
      • Jamison R.N
      • Virts K.L
      The influence of family support on chronic pain.
      and to poorer adaptation
      • Flor H
      • Kerns R.D
      • Turk D.C
      The role of spouse reinforcement, perceived pain, and activity levels of the chronic pain patient.
      • Gill K.M
      • Keefe F.J
      • Crisson J.E
      • Van Dalfsen E
      Social support and pain behavior.
      • Romano J.M
      • Turner J.A
      • Jensen M.P
      • et al.
      Chronic pain patient–spouse behavioral interactions predict patient disability.
      to chronic pain. Spouse’s behaviors that might be perceived by the person in pain as supportive (i.e., solicitous responses) have been associated with increased disability, while negative or ignoring responses, which might be perceived as less supportive, have been related to more activity.
      • Flor H
      • Kerns R.D
      • Turk D.C
      The role of spouse reinforcement, perceived pain, and activity levels of the chronic pain patient.
      • Romano J.M
      • Turner J.A
      • Jensen M.P
      • et al.
      Chronic pain patient–spouse behavioral interactions predict patient disability.
      While family members can, and need to, develop behaviors that are supportive without reinforcing pain behaviors,
      • Sternbach R.A
      the studies cited above indicate the difficult balance that family members must achieve to support the person in pain without reinforcing dysfunction. The PSG was perceived as supportive and was also associated with qualitative and quantitative indications of decreased pain-related dysfunction. This may indicate that pain support groups are, as in the case of this group, able to augment both the pain-specific and general support available to the person in pain while also encouraging improved function.
      Pain-specific support may also be sought from health professionals, but, in many contexts, may be difficult for the health professional to provide adequately. Pain Support Group membership was associated with a shift in seeking support from health professionals to peers. Participants commented that the PSG covered “a gap in the available services” by providing support for the difficult task of living with chronic pain. Health professionals, particularly primary health care providers, frequently report the frustration of having inadequate time, training, or resources to meet these support needs adequately. Group membership was associated with a decrease in pain-related visits to family physicians, perhaps reflecting a shift from use of professional to peer support networks. These findings support Jacobs and Goodman’s
      • Jacobs M.K
      • Goodman F
      Psychology and self-help groups.
      contention that support and self-help groups are a legitimate method for appropriately meeting some health needs that may be currently unmet, partially met, or ineffectively or inefficiently met by health professionals. In the present health care environment where professional resources are becoming increasingly time-pressured and tightly focused, the value of this type of support may increase even further.
      The quantitative data, supported by some qualitative data, indicated increased functional activity after group membership. This is the opposite of what would be expected if the group had reinforced disability—a theoretically possible outcome. This positive outcome may have been due to the group leaders’ efforts (supported by health professionals) to develop a positive and empowering focus for the group rather than a focus on pain and disability. In a detailed qualitative study of women with chronic pain, Howell
      • Howell S.L
      A theoretical model for caring with women with chronic nonmalignant pain.
      identified the importance of validation of the experience of the person with chronic pain, both self-validation and by others, for assisting a healthy progression towards the state described as “fulfilling my life with (in spite of) pain.”
      • Howell S.L
      A theoretical model for caring with women with chronic nonmalignant pain.
      This healthy state, which is consistent with the goal state of many pain management programs,
      • Sternbach R.A
      is also closely allied to the goals of the PSG reported in this paper. Several of the processes and subprocesses that Howell
      • Howell S.L
      A theoretical model for caring with women with chronic nonmalignant pain.
      described on the path of healthy progression—for example, “caring for myself,” “validating my reality,” “sharing the burden,” and “maximizing my well-being”—closely mirror benefits that participants in the present study reported gaining from their participation in the PSG. This may in part explain the positive outcomes of membership in this group and why the group did not reinforce pain-related disability.
      People who choose to attend a pain support group are a subsample of the chronic pain population and may not be representative of the entire chronic pain population. Despite extensive advertising, the PSG grew slowly, indicating that many people with chronic pain choose not to attend. While a pain support group is not a panacea for all people with chronic pain, the positive quantitative and qualitative outcomes and high rate of continued membership in this group indicated that pain support groups can be helpful for people who choose to join. Health professionals have often tended to avoid supportive involvement with support groups.
      • Jacobs M.K
      • Goodman F
      Psychology and self-help groups.
      While a key attribute of successful support groups is frequently that they are self-governed rather than professionally led,
      • Jacobs M.K
      • Goodman F
      Psychology and self-help groups.
      there may be a valuable role for health professionals in providing input when invited, and helping to guide, support, and assist group leaders in the development and maintenance of a positive group focus on coping, raising self-esteem, and maximizing function.

      Acknowledgements

      The authors thank the members of the Waikato Pain Support Group for their generous participation and support of this research. Thanks also to Janet Fanslow, PhD for her helpful comments on this paper.

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