Psychosocial factors and self-help in ankylosing spondylitis patients

Abstract

The purpose of this research was to investigate psychological factors associated with ankylosing spondylitis (AS), focusing on possible differences between members and nonmembers of self-help groups for people with this form of chronic disease. Analysis of health locus of control beliefs along 3 dimensions: internality, powerful others and chance, showed that members of National Ankylosing Spondylitis Society (NASS) self-help groups placed significantly less reliance on "powerful others" for control of health than did nonmembers. This pattern of beliefs may be related to the nature of AS, which is incurable, progressive, unpredictable and difficult to diagnose. It may therefore appear to the patient that health care professionals have little to offer them. People who join a self-help group may also feel less reliant on medical personnel to control their health. Group members also differed from nonmembers in terms of belief in the value of exercise for AS, frequency of exercise, tendency to seek information about the disorder and perceived social support. A combination of psychosocial and medical variables discriminated between members and nonmembers at a rate of 71.9% accuracy. Results indicate that NASS self-help group members appear to comply more with exercise treatment and also receive a valuable source of social support from fellow members. This investigation demonstrates the utility of including psychosocial variables in the study of chronic disease.

The experience of cancer survivors in community-based psycho-social support activities in Shanghai, China: a qualitative study

“…The self-help groups which offer the venue for shared experience, emotional support and social learning can help constitute a social identity. Some studies in the West reported that giving help to others in a mutual help group predicted improvements in psycho-social adjustment, and giving advice was a unique predictor, and members were satisfied with the support they received and felt that the groups were effective [36][37][38]. Our results from SCRC confirm similar response patterns in selfhelp research in Western countries.…”

Ankylosing spondylitis self-help organisations – do members differ from non-members?

“…Better social support may be one of the mechanisms leading to more effective coping among members. For example, Barlow et al showed that members of a self-help organisation derive satisfaction through social support provided by group member [7,8]. Furthermore, results of a German survey among patients with different rheumatic diseases, including AS, showed that members are in general more compliant and engaged in therapy, and are more confident that they can control the disease than non-members [9].…”

“…According to the Assessment of SpondyloArthritis international Society (ASAS) and European League Against Rheumatism (EULAR) recommendations [4], membership in a patient self-help organisation "may be useful" in the management of AS; however, the evidence for this recommendation is weak [6]. Older studies in AS comparing members and non-members of a patient self-help organisation were rather small and mainly focussed on psychosocial benefits associated with membership [7][8][9]. The German AS patient self-help organisation "Deutsche Vereinigung Morbus Bechterew" (DVMB) was founded in 1980 and has currently more than 15,000 members.…”

Focusing on arthritis and parenting

“…Previous studies at Coventry have generated information on these issues from both parents and grandparents who have arthritis (Barlow et al, 1992;Cullen and Barlow 1997). The study reported here is one part of a wider research project which explores the nature and extent of problems that parents with rheumatic diseases experience in the context of caring for children.…”