Purpose: This qualitative study sought to explore older people's experience of ageing with multiple sclerosis (MS) and to describe the natural history of self-management from their points of view. Methods: Eighteen people over age 55 and living with MS for at least 20 years were recruited from an MS clinic and rehabilitation outpatient records. Interviews (60-80 min), using open-ended questions, explored participants' lifelong experiences of MS. Following interview transcription, data were coded and analyzed; themes, subthemes, and their relationships were described based on consensus. Results: Participants recounted their diagnosis process, their life experience with MS, and how they eventually accepted their disease, adapted, and moved toward self-management. The findings included vivid descriptions of social relationships, health care interactions, overcoming barriers, and the emotions associated with living with MS. A conceptual model of phases of self-management, from diagnosis to integration of MS into a sense of self, was developed. Conclusions: Study participants valued self-management and described its phases, facilitators, and inhibitors from their points of view. Over years and decades, learning from life experiences, trial and error, and interactions with health care professionals, participants seemed to consolidate MS into their sense of self. Selfdetermination, social support, strong problem-solving abilities, and collaborative relationships with health professionals aided adaptation and coping. Findings from this study make initial steps toward understanding how MS self-management evolves over the life course and how self-management programmes can help people with MS begin to manage wellness earlier in their lives.Key Words: aged; chronic disease; adaptation, psychological; quality of life; self care; multiple sclerosis. RÉ SUMÉObjectif : Cette é tude qualitative visait à analyser l'expé rience du vieillissement chez les aîné s atteints de sclé rose en plaques (SP) et à dé crire le parcours naturel de leur autogestion des soins en se basant sur leurs propres points de vue. Mé thode : Un é chantillon de 18 personnes de 55 ans et plus, vivant depuis au moins 20 ans avec la SP, a é té recruté dans des cliniques de SP et à partir de dossiers de patients externes en ré adaptation. Des entrevues de 60 à 80 minutes ont é té ré alisé es avec des questions ouvertes, qui ont permis aux participants de parler de leur expé rience de vivre avec la SP. Une fois les entrevues transcrites, les donné es recueillies ont é té codé es et analysé es; les thè mes, les sous-thè mes et leurs relations ont é té dé crits en se basant sur une formule de consensus. Ré sultats : Les participants ont raconté la fac¸on dont ils ont reç u leur diagnostic et comment, à la longue, ils avaient fini par accepter leur maladie, s'y é taient adapté s et é taient graduellement passé s à une autogestion de leurs soins. Les conclusions regroupaient des descriptions vivantes des relations sociales, des interactions en soins de sant...

This two-tiered conceptual model of health aging, based on the perspectives of older persons with MS, provides a potential framework for the development of MS self-management program curricula aimed at optimizing quality of life. Further empirical testing may validate its utility in predicting healthy aging with MS.

BackgroundThe debate within the multiple sclerosis (MS) community initiated by the chronic cerebrospinal venous insufficiency (CCSVI) hypothesis and the subsequent liberation procedure placed some people with MS at odds with health care professionals and researchers.ObjectiveThis study explored decision making regarding the controversial liberation procedure among people with MS.Subjects and methodsFifteen people with MS (procedure, n=7; no procedure, n=8) participated in audiotaped semistructured interviews exploring their thoughts and experiences related to the liberation procedure. Data were transcribed and analyzed using an iterative, consensus-based, thematic content-analysis approach.ResultsParticipants described an imbalance of motivating factors affirming the procedure compared to hesitating factors that provoked the participant to pause or reconsider when deciding to undergo the procedure. Collegial conversational relationships with trusted sources (eg, MS nurse, neurologist) and ability to critically analyze the CCSVI hypothesis were key hesitating factors. Fundraising, family enthusiasm, and the ease of navigation provided by medical tourism companies helped eliminate barriers to the procedure.ConclusionKnowledge of factors that helped to popularize the liberation procedure in Canada may inform shared decision making concerning this and future controversies in MS.