Mutual support groups in rheumatic diseases: Effects and participants' perceptions

Authors


Abstract

Objective

To investigate in a randomized controlled trial the effects of mutual support groups in rheumatic diseases on social network size, social skills, loneliness, daily functioning, and life satisfaction as well as to identify patients' perceptions of the support group.

Methods

Participants were 112 patients with chronic rheumatic disorders affecting the joints. Data were collected with self-report questionnaires and group interviews.

Results

Effects have been found on social skills only. More specifically, mutual support groups at postintervention decreased distress in expressing negative feelings toward other people. This effect did not persist at the 6-month followup evaluation, but at that time an increase in frequency in making one's wishes known to others was found. In patients who attended at least 5 of all 10 sessions, an increase in expressing positive feelings toward others was found at followup. Mutual support groups were evaluated positively.

Conclusion

Mutual support groups are recommended for patients experiencing difficulties in social interactions.

Introduction

Mutual support groups as a basis for meeting fellow patients seems to be a very effective source of support when people have trouble with gaining helpful and avoiding unhelpful interactions (1–3). Only a few controlled trials on mutual support interventions have been reported in the literature (4–6). The randomized controlled trial described in this article compared effects in mutual support groups with a waiting-list control group. The selection of outcome measures is based on the relevance and importance of these effects for people with rheumatic diseases (1–3, 7, 8). Participants in mutual support groups are hypothesized to experience a decrease in feelings of loneliness because of the additional social contact with other people in a similar situation. Other anticipated effects of participation in mutual support groups are achievement of new relationships, an improvement in skills in eliciting and accepting social support, better daily functioning, and an increase in satisfaction with life.

Methods

Participants and procedure.

For the present study, data have been used from patients assigned to mutual support groups (n = 56) or a waiting-list control group (n = 56) in a randomized controlled trial described elsewhere (9).

Self-report questionnaires were used for measuring effects. These questionnaires were sent to all patients by mail just before the first session of the mutual support groups (preintervention), right after the end of all sessions (postintervention), and 6 months later (followup). For process evaluations, group interviews were conducted by the supervisors after every session and participants were asked to fill out a questionnaire after the last session.

Study groups.

Mutual support took place in 5 groups of 10–12 patients. The intervention consisted of 10 2-hour sessions with 1 week between the first 8 sessions, and a 2-week and a 3-week interval between sessions 8, 9, and 10.

The sessions were led by 2 trained patients. The goal of the mutual support groups was to exchange information, experiences, feelings, and emotions. The supervisors' role was to facilitate interaction. During the first session, patients determined the topics of conversation for all sessions. In the fourth session, patients could change the topics for the remaining 5 sessions; the last session was devoted to discussing important experiences and events of the previous period. At the end of every session, patients were asked to think about the topic of conversation of the next session as a homework assignment.

Outcome measures.

Social network size.

Social network size was assessed by asking patients to list all persons who are important to them and with whom they meet on a regular basis. The number of people on the list has been used as an indication of social network size.

Social skills.

The Scale for Interpersonal Behavior (SIB) has been used to measure social skills (10). The first half of the 50 items measure distress in social situations (“How nervous or tense would you feel if you behaved in the way described?”) with answers on a 5-point scale ranging from “not at all” to “extremely.” The other 25 items repeat the description of the social situation of the first 25 items; for these items, however, respondents are asked to indicate how often they behave in the way described (“never,” “rarely,” “sometimes, ”usually,“ or ”always“). There are 4 subscales in the SIB for which both distress and frequency are measured: 1) expression of negative feelings toward others, 2) expression of and dealing with personal limitations, 3) making wishes known to others, and 4) expression of positive feelings toward others.

Loneliness.

The Loneliness Scale (11) was used to measure loneliness. The Loneliness Scale consists of 5 positive and 6 negative items. The positive items assess feelings of belonging (e.g., “There are plenty of people that I can depend on if I'm in trouble”), whereas the negative items apply to 3 separate aspects of missing relationships (e.g., “I miss having people around me”).

Functional health status.

Daily functioning was measured with the SIP68, a condensed version of the Sickness Impact Profile (12). The SIP68 consists of 68 items measuring health-related behavioral problems on somatic autonomy, mobility control, emotional stability, psychological autonomy and communication, mobility range, and social behavior.

Life satisfaction.

Life satisfaction was measured with the Life Satisfaction Questionnaire (LSQ) (13). The LSQ consists of 9 items measuring satisfaction with life in general and with the following 8 life domains: self-care ability, leisure situation, vocational situation, financial situation, sexual life, partnership relations, family life, and contacts with friends and acquaintances.

Statistical analyses.

Mann-Whitney U tests, t-tests, and chi-square tests were used to compare the study groups in patient characteristics and outcome measures. Multiple regression analyses were used to investigate whether mutual support groups had an effect on the outcome measures. If variables differed significantly between the study groups at preintervention and also were significantly related to the outcome measures, they were considered potential confounders and consequently included as predictors in the regression analyses. Variables tested for this purpose include patient characteristics (Table 1) as well as suffering from other chronic conditions, having recently experienced interfering incidents, participation in mutual support groups during the previous period, and social desirability in responding to the questionnaire. In addition, the dependent variable at preintervention was included as a predictor. Tests were done to check for high collinearity, outliers were removed from the analyses, and skewed dependent variables were transformed by taking square roots or logarithms of the values.

Table 1. Patient characteristics and outcome measures at preintervention of the mutual support group (MSG) and the waiting list control group (WLCG)
 MSG (n = 56)WLCG (n = 56)Theoretical range
  • *

    Low = primary school or vocational training; medium = lower general secondary education or advanced vocational training; high = higher vocational training or college/university training.

  • Psoristic arthritis, juvenile chronic arthritis, adult onset Still's disease, spondylarthrosis, spondylarthropathy (associated with Crohn's disease), and diffuse ideopathic skeletal hyperostosis.

Age, mean ± SD, years51.1 ± 8.9150.5 ± 8.65 
Sex, % male41.132.1 
% single10.712.5 
Monthly family income <euro;1,591/$1,417, (%)76.478.0 
Level of education*, %   
 Low40.451.1 
 Medium46.828.9 
 High12.820.0 
Diagnosis, %   
 Rheumatoid arthritis (RA)54.555.4 
 Osteoarthritis (OA)9.110.7 
 Ankylosing spondylitis (AS)16.417.9 
 Less common diagnoses10.95.4 
 Combination RA/OA, RA/OA/other9.110.8 
Duration of disease, mean ± SD, years14.1 ± 11.2513.9 ± 10.56 
Social network size, mean ± SD13.2 ± 6.0913.7 ± 5.391–20
Social skills, mean ± SD   
 Distress52.8 ± 16.5652.2 ± 15.1125–125
 Frequency75.5 ± 15.1776.6 ± 13.7825–125
Loneliness, mean ± SD3.9 ± 3.462.8 ± 3.160–11
Impact on daily functioning, mean ± SD14.4 ± 8.0415.6 ± 7.190–68
Life satisfaction, mean ± SD4.4 ± 0.704.4 ± 0.641–6

Intention-to-treat analyses were performed in which dropouts (n = 7 at postintervention and n = 3 at followup) were given the mean value of a particular measure. Intention-to-treat analyses did not include those patients who decided not to enter the study after randomization but before the preintervention measurement (n = 15). Additional analyses were performed for those patients who attended at least half of the 10 sessions (per-protocol analyses) because a minimal exposure to the intervention may be expected to be necessary to be influenced by it.

Analysis in process evaluation consisted of computing percentages and means, if applicable, of answers in reply to multiple-choice questions. In addition, answers to open questions were classified into categories.

Results

Preintervention comparisons of patient characteristics and outcome measures.

Table 1 shows patient characteristics and outcome measures at preintervention. The study groups did not differ significantly at preintervention.

Intention-to-treat analyses.

The average attendance in the mutual support groups was 6.4 sessions. As can be seen in Table 2, mutual support improved social skills at postintervention (reduced distress in expressing negative emotions β = –0.155, P < 0.05) and at followup (increased frequency of making wishes known to others β = 0.173, P < 0.05). Other predictors were outcome variables at preintervention (β = 0.81, P < 0.001 and β = 0.717, P < 0.001).

Table 2. Intention-to-treat results of multiple regression analyses
VariablesIndependent variables: β
PreinterventionMutual support groupR2Adjusted R2n
  • *

    P < 0.001.

  • P < 0.05.

Distress in expressing negative emotions at postintervention0.81*−0.160.670.66107
Frequency of making wishes known to others at follow-up0.72*0.170.540.53110

Per-protocol analyses.

The average attendance among patients who attended at least 5 of the 10 sessions in mutual support was 8.8 sessions. The patients who were excluded from the per-protocol analyses (n = 18) were significantly lonelier at preintervention than the per-protocol study group (n = 94). There were no differences between the 2 groups at preintervention on the other outcome measures or on patient characteristics.

Effects of mutual support.

Just like the intention-to-treat analyses, results of per-protocol analyses in Table 3 show that mutual support significantly reduced distress in expressing negative emotions at postintervention (β = –0.144, P < 0.05) and increased frequency of making wishes known to other people at followup (β = 0.202, P < 0.01). Other predictors were outcome variables at preintervention (β = 0.803, P < 0.001 and β = 0.738, P < 0.001). Table 3 also shows that at followup, per-protocol analyses indicated additional increasing effects of mutual support on expressing positive feelings toward other people (β = 0.165, P < 0.05). In addition to the mutual support condition, expressing positive feelings toward other people was also explained by this outcome measure at preintervention (β = 0.699, P < 0.001).

Table 3. Per-protocol results of multiple regression analyses
VariablesIndependent variables: β
PreinterventionMutual support groupR2Adjusted R2n
  • *

    P < 0.001.

  • P < 0.05.

  • P < 0.01.

Distress in expressing negative emotions at postintervention0.80*−0.140.640.6389
Frequency of making wishes known to others at followup0.74*0.200.580.5792
Frequency in expressing positive feelings at followup0.70*0.170.520.5092

Process evaluation.

Characteristics of participants in process evaluations.

All 56 patients assigned to mutual support (Table 1) who attended a particular session of mutual support participated in the group evaluation after that session. None of the patients who filled out the questionnaire for the process evaluation (n = 38) attended fewer than 3 sessions. Patients who filled out the questionnaire did not differ significantly in age, sex, being single or not, income, level of education, diagnosis, or disease duration from patients who did not return the questionnaire (n = 18).

Content.

Topics of conversation were living with chronic pain, living with unpredictability, acceptance of having a chronic disease, medical interventions, dealing with negative reactions from the social environment, relationships and sexuality, rheumatic diseases and work, nontraditional treatments, and side effects of medication. Participants indicated that they found the topics to be very helpful. Positive aspects were receiving useful information, emotional support, caring, and understanding. Some patients indicated that they were in need of a more intense intervention and experienced the mutual support group as a noncommittal intervention.

Structure.

Most respondents (76%) were satisfied with the number of meetings. About 16% of the respondents, however, would have liked to have more meetings. Only very few respondents thought that there were too many meetings. Weekly meetings during the first 8 weeks was evaluated positively by almost all respondents (92%). Intervals of 2 weeks and 3 weeks between the last 3 meetings, however, were too long according to 23% and 43% of the respondents, respectively. Meetings were from 7:30 to 9:30 in the evening. This was experienced as the right time by 82% of the patients and almost all respondents (90%) perceived 2-hour sessions as sufficient.

Supervisors.

Overall, the supervisors were evaluated positively. Positive qualities of the supervisors were guiding the conversations well (according to 79% of the respondents), good cooperation (according to 84% of the respondents), being motivated (indicated by 97% of the respondents), and showing an interest in the group (all respondents).

Group composition.

The majority of respondents (82%) were satisfied with the size of the group. The heterogeneity of the groups in age, disease duration, and kind of rheumatic disease was also evaluated positively by most patients (90%).

Discussion

Positive effects of mutual support groups were found on social skills only. No effects were detected on social network size, loneliness, daily functioning, and life satisfaction. Likewise, no effects were found on social network size (6), functional health status (4, 6), and life satisfaction (4) in other mutual support group interventions.

Process evaluations revealed that patients were satisfied with the intervention and felt very supported by their group. In contrast to other studies (4, 14), no negative feelings (e.g., fear, discouragement) as a consequence of meeting more severely ill persons in the mutual support groups were reported in our study.

Data were obtained from as large a sample as was practically and economically possible. To achieve a power of 80% based on an effect size of 0.20 (15), a total sample of 784 patients would have been necessary (16). Because the present study included only 112 patients, the power to detect effects is <60%, making it difficult to avoid a Type II error.

Acknowledgements

The authors wish to thank the patients who participated in this study, the supervisors of the mutual support groups, and the rheumatologists of Atrium Medical Center (Heerlen, The Netherlands) and Maasland Hospital (Sittard, The Netherlands).

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