Adjusting to living with multiple sclerosis: the role of social groups

Abstract

Multiple sclerosis (MS) is typically associated with life-long adjustment to wide-ranging, changeable symptoms and psychosocial disruption as all relationships are changed or lost. Despite accumulating evidence, the therapeutic impact of harnessing social group factors in MS management and rehabilitation remains largely unexplored. We investigated their role specific to adjusting to MS. A qualitative approach was used with thematic analysis to induce a rich and developing account of the impact of social groups on adjustment for 15 individuals with MS. An adjustment questionnaire was used to provide a framework for its organisation and discussion. The analysis revealed three themes associated with loss, change and social processes that influenced adjustment. These features distinguished between those who were more or less able to adjust, and resonated well with processes previously identified as central to identity loss and change. Social factors enhanced adjustment through easing transition between pre- and post-MS diagnosis lives. Notably, maintenance of pre-existing social roles and relationships was critical in providing a meaningful basis for integrating the old with new senses of self. The capacity to join new social groups was as key in adjustment as was awareness of having access to multiple social groups to avoid being solely defined by MS. These concepts provided a more stable grounding upon which to nurture value systems and employ collective support to counter the negative consequences of living with MS.