Being a young adult with Duchenne’s Muscular Dystrophy: wellbeing and priorities for an adult life

This thesis was completed as part of the Doctorate in Clinical Psychology at Staffordshire University, completed by the first author. The topic originated from the personal experiences of the first author, and an interest in the relationship between physical and mental health, particularly at developmentally significant times like the transition from adolescence to adulthood. Muscular Dystrophy (MD) is a degenerative condition that causes progressive levels of disability and limits life expectancy. Chapter One systematically evaluated the current literature on the wellbeing of adolescents and emerging adults with MD. Nine papers were critically reviewed, and results suggested that the wellbeing of this population is reliant on supportive relationships, autonomy, and a maturing sense of self-acceptance, and they are at an increased risk of mental health difficulties. While the quality of the research varied and conclusions were interpreted with caution, the review highlighted a need for earlier psychological support with a focus on systemic, collaborative working. Chapter Two investigated what emerging adults with Duchenne’s MD (DMD: the most common form of this genetic condition), primary carers, and healthcare professionals value for a positive and autonomous adult life with DMD. A Q-method study was used to explore whether these three expert stakeholder groups prioritise similar goals when engaged in transition-based care. Results of the factor analysis found two different views of how to facilitate a positive adult life in society; one that valued taking on a more adult role within their existing system, and another that believed adulthood was enabled by breaking away and accessing new experiences. The mix of expert stakeholders within factor one, and combination of one emerging adult and three healthcare staff in factor two, suggests that transition planning should be held with these different value-bases in mind; potentially guiding exploratory conversations about how to best support the adult life valued by the individual. Chapter Three is a summary of the empirical research, for dissemination to young people with DMD and their families, as well as healthcare staff.