Faith, hope and fallacy: an idiographic exploration of the experiences of people with Multiple Sclerosis participating in research trials

Multiple sclerosis (MS) is a heterogeneous degenerative disease of the central nervous system. It is usually diagnosed in people between 20 and 40 years of age. MS is the most common cause of non-traumatic disability in the young adult population and affects two to three times as many women than men. It is estimated that there are over 110 000 people living with MS in the United Kingdom. Currently MS has no cure although available disease modifying treatment (DMT) options have increased significantly over recent years. In order for these treatments to have gained authorisation for use, many clinical trials have been undertaken involving people with MS (pwMS). However, little is understood about the experience of participating in MS research. Moreover, evaluation of experience of taking part in research has been largely conducted using impersonal survey approaches to assess study conduct satisfaction or barriers to recruitment. Whilst there is extensive published literature cataloguing the nomothetic outcomes of completed MS DMT trials, the experiences of people with MS taking part in MS research has not previously been the specific focus of research. In this thesis, interpretative phenomenological analysis (IPA) has been employed to understand the experiential meaning that exists for pwMS in taking part in MS research. Six semi-structured interviews have been conducted involving four participants who were recruited to long-term trials of pharmacotherapeutic interventions. Two participants were interviewed twice, one of whom had taken part in a study that was terminated prematurely. Interpretative phenomenological analysis of participant accounts revealed three key themes which comprised: benefits and harm of trial participation (physical and psychological), human connectedness within the trial setting, and aspects of self in connection with trial participation. The findings of this thesis indicate that self-efficacy (or activation), control, hope, altruism trust, power, therapeutic misunderstanding, enhanced care and shared decision making are important for pwMS taking part in research. Findings will be helpful to research clinicians to better understand research participation from the participant frame of reference and to improve communication, participant understanding and experience going forwar