What can we learn from the personal insights of individuals living and coping with multiple sclerosis?

PURPOSE: The aim of this qualitative study was to explore the personal accounts of individuals with Multiple Sclerosis (MS). Hence the study presents individuals experiences of living with MS to date and the effective self-management strategies employed to cope in day-to-day life. METHODS: Thematic analysis was used to explore the personal narratives of thirteen individuals with MS in two focus group discussions. RESULTS: Participants in both groups identified similar themes related to the experiences of living and coping with MS. These were: Learning something was wrong (before diagnosis); getting a name (diagnosis); lack of professional support; unchanging family relationships, adjustments to employment circumstances and social life; challenges; successful coping via proactivity, perspective and control (self-management techniques); advice for others, and recommendations as to how services could be improved and developed. CONCLUSION: The most salient finding is that there is a need for a formal approach to the management of psychosocial problems and challenges associated with MS. This will require both users and health professionals working together to further the development of clinical guidelines and services for this population.

Psychosocial interventions in people with multiple sclerosis: a review.

BACKGROUND: Upon diagnosis individuals with Multiple Sclerosis (MS) must cope with both day to day and disease-related stressors in addition to unpredictable, fluctuating and confusing symptoms. Furthermore, disease progression may interfere with employment, family life, relationships and social activities. Psychosocial interventions aim to help individuals manage these psychological, social and emotional challenges. However, there are no specific guidelines available regarding the most effective intervention content, format or delivery. Therefore, a review of the research that has utilised these interventions, specifically those which, by definition, aimed to improve quality of life (QoL) and/or well-being in people with MS, was considered essential in order to identify which aspects of these interventions may help alleviate the psychosocial challenges associated with MS. OBJECTIVES: To identify all randomised controlled trials (RCTs), quasi-experimental, cohort, case control and case series studies that have investigated psychosocial interventions in people with MS which aimed to improve QoL and/or well-being, to establish the methodological quality of such studies, and to determine the effectiveness of the interventions. SEARCH STRATEGY: Searches were carried out using computerised databases with predefined search terms; this was supplemented by manual searches of reference lists of all retrieved articles. Relevant journals were also hand searched. SELECTION CRITERIA: Studies written in English and published before January 2006, investigating the effectiveness of psychosocial interventions on QoL and/or well-being in people with MS, were eligible for inclusion. DATA COLLECTION AND ANALYSIS: Methodological quality was independently assessed by two reviewers using the Downs and Black quality scoring checklist. The qualitative and quantitative characteristics of studies were extracted using a data extraction sheet. MAIN RESULTS: Thirty-three studies fulfilled the inclusion criteria; however, interventions varied widely in content, delivery and duration. Furthermore, failure to report full methodological details, as well as weaknesses in study design, reduced the strength of inferences that could be drawn from these studies. These notwithstanding, there were three studies of sufficient quality to provide some evidence regarding the value of education/information, goal setting, homework assignments, exercise, discussion forums and multidisciplinary team support. Thus, this review has identified the potential benefit of the aforementioned activities in the psychosocial management of this population. However, further well designed clinical trials are warranted to determine, definitively, the effectiveness, or otherwise, of these components.