Self-management and self-efficacy across the multiple sclerosis journey

Multiple Sclerosis (MS), the most common progressive neurological disease in young adults can take a relapsing remitting (RR) course especially in the early stages. There is a gap in knowledge in the application of self-management and self-efficacy with progressive long-term conditions. This research explored the experience of individuals with RRMS with particular focus on their attitudes to self-management and development of self-efficacy. The research addresses the question about engagement with self-management and self-efficacy influencing the journey of people with RRMS and their formal and informal carers. The research draws on the experiences, perspectives and understanding of the social processes and reality through interaction. Using grounded theory for generation of the themes captured from people with RRMS, their partners/carers and professionals involved in their care. The research design around a conceptual framework, used longitudinal studies capturing the experiences of people with RRMS and their partners/carers, through individual interviews and self-efficacy qualitative questionnaires over eight monthly meetings. The research sample of people with RRMS was three male and three female with an average age of 44.5 years, a mean duration with RRMS for 9.6 years. Professionals shared their perceptions and experiences through a focus group and individual interviews. Personal and reflective diaries kept by the researcher of events throughout the study enabled decision and audit trials to contribute to the rigour of the research. The data analysis has generated a number of themes that have been developed and presented throughout the thesis. The research process has generated new theory around the knowledge of and experiences of the three groups of research participants. Fluctuations of living with RRMS across roller coaster journeys, with transitional processes of daily changes and meanings brought threats and challenges. These highlight the importance of self-efficacy and self-control, of coping with uncertainty and unpredictability, through engaging with self-management behaviours. These enhanced perceptions of self- determination, positiveness, independence, quality of life and well-being. The transformation of uncertainty secured hope, opportunities and embracing RRMS through coping mechanisms and self-confidence. Formal and informal support was required where the People with RRMS deemed appropriate. The epistemological perspective has explored power as a multilayered and dynamic concept with different knowledge bases and issues that need addressing prior to successful partnership working. The research is original in terms of the groupings, the areas reviewed for this RRMS group and the potential for ongoing work, policy and practice changes both locally and nationally. Implications for practice, policy and further research were derived from the conclusions. In practice more empowerment, advice and information are required for people with RRMS to live independently. Policies for skills and knowledge training in these areas are required for shared decision-making and partnership working. Further research is required into utilisation of Integrated Care Management of ways of supporting independence, self-control and personalised plans for people with long- term conditions and their informal carers.