Experiences of multiple sclerosis in families

Multiple Sclerosis (MS) is a progressive demyelinating disease of the central nervous system that affects not only those with MS, but also those who are close to them. The present papers aim to explore the experiences of MS in families. The first paper presents a review and synthesis of the qualitative literature exploring first-hand accounts of family members of people with MS. The twenty studies that met the inclusion criteria captured the perspectives of individuals with MS, partners, children, siblings and parents. The studies were generally of a reasonable quality, with findings identifying a range of factors salient to the experiences of family members. Methodological limitations indicated areas for future research that would strengthen the evidence base. The second paper used a modified grounded theory methodology and semi-structured interviews to explore couples' joint narratives of their experiences of MS. The findings demonstrated that MS can have a significant impact on the couple relationship, often affecting areas of great importance and meaning for the couple. MS can lead to emotional and social changes for each partner, as well as shifts in their attitudes, values and philosophies and hopes, fears and expectations. Dynamic changes in couples shared understanding were identified, as was an on-going process of sense making. Couples' responses to the challenges posed were in many cases broad and flexible. The balance for both partners between expressing and asserting their own needs and positions whilst recognising and appreciating those of their partner was a characteristic to emerge from the data. An explanatory model grounded in the data is presented. Areas for future research and the clinical implications are explored. The target journal for both Paper A and Paper B is Psychology and Health, a journal that promotes the study and application of psychological approaches to health and illness.EThOS - Electronic Theses Online ServiceGBUnited Kingdo