The effects of identification with a support group on the mental health of people with multiple sclerosis

Abstract

Objective

Multiple sclerosis (MS) is associated with various psychological problems, including depression and anxiety. Whilst MS support groups are intended to improve mental health, this goal is not always achieved. Taking a social identity approach, we hypothesise that it is the level of subjective identification with a support group (rather than simply support group membership per se) that positively affects the mental health of people with MS.

Methods

152 individuals with MS were recruited via UK MS support groups and completed a questionnaire. This included measures of support group identification, depression, anxiety and satisfaction with life, as well as control variables (education level and age).

Results

Analyses revealed that, as hypothesised, support group identification was significantly linked to depression, anxiety and satisfaction with life. Moreover, group identification explained a significant amount of variance in addition to that explained by education and age on each health outcome. Repeating the analysis to compare each of the three main sub-types of MS revealed these effects to be present for individuals with Relapsing–Remitting (RR) and Primary Progressive (PP) MS, but not for those with Secondary Progressive (SP) MS.

Conclusions

We suggest that identifying highly with an MS support group has important positive outcomes for MS patients' mental health. This has implications for practicing clinicians: people with MS (particularly RRMS and PPMS) should be encouraged to engage with support groups, but more must be done to ensure they subjectively identify with these groups, rather than merely attend them.

Introduction

Multiple sclerosis (MS) is a chronic neurological disease involving demyelination of the nervous system [1]. There are three key MS sub-types, each exhibiting different progression patterns: Relapsing–Remitting (RR; periods of symptom remission interspersed with periods of relapse), Primary Progressive (PP; a slow and continual worsening of symptoms), and Secondary Progressive (SP; RRMS transitioning into a steadier worsening of symptoms) [2]. Around 80% of patients are diagnosed initially with RRMS, with onset usually in early adulthood, whilst around 20% of patients are diagnosed initially with PPMS, with onset usually in mid-adulthood [3]. Approximately 50% of RRMS patients transition into SPMS within 10 years, rising to 90% after 25 years [4]. SPMS patients experience progressive decline in baseline functioning, leading to increasing disability [2].

In addition to physical symptoms (fatigue, numbness, loss of bowel/bladder control, and blindness), MS patients may experience various psychological problems [5], the most common being depression. Lifetime prevalence of major depressive disorder (MDD) following MS diagnosis is about 50% [6], and depression rates are higher for MS than for other chronic conditions [7]. MS patients are also more likely to experience anxiety than people without MS: lifetime prevalence of anxiety disorders in patients with MS is approximately 37% [8], [9]. These widespread psychological difficulties have inspired various therapeutic approaches. In particular, based on findings that social support has strongly positive associations with MS patients' mental health [10], [11], [12], researchers and practitioners have promoted support groups as a way to improve psychological well-being [13]. Contrary to expectations, however, support groups do not seem to improve MS patients' mental health. No consistent improvements in quality of life or depression scores were found in an eight-week MS peer-support programme [14]. Additionally, individual cognitive behavioural therapy (CBT) and antidepressants were both found to be significantly more effective than group therapy at reducing depression among 63 MS patients [15]. Importantly, however, these studies fail to assess the extent to which patients subjectively identify with the support group itself.

Group identification – a concept derived from the social identity approach to group behaviour [16] – refers to one's sense of belonging to a group coupled with one's sense of commonality with other group members [16], [17]. The fact that greater group identification has been found to pave the way for more positive social relationships [16], and that in turn good social relationships positively affect mental health [18], has inspired the prediction that greater group identification is associated with improved mental health. This prediction has already found confirmation in various studies [19]. For instance, prison guards who experience greater identification with the group of prison guards report lower levels of psychiatric disturbance [20]. Meanwhile, lower levels of depressive symptoms have been found among people who identify highly with their social group (compared to those who identify less highly): a result found for both the family group and an army unit [21].

Consistent with these findings, our central hypothesis is that the positive effects of group identification on mental health should also be observed in MS support groups. To our knowledge, no work has investigated this possibility. Moreover, since the three key MS sub-types (RRMS, PPMS, and SPMS) involve quite different patterns of disease progression (and thus may produce differing experiences for patients) [2], a further aim was to investigate whether the size of the effects of support group identification on mental health might differ across MS sub-types.