The Path to Self-Management: A Qualitative Study Involving Older People with Multiple Sclerosis

Abstract

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...

The Multiple Sclerosis Self-Management Scale

“…More importantly, a number of incapacitating MS symptoms such as bowel and bladder incontinence and pain impede employment and social participation. 27 Thus, items are required to more fully assess the many complex dimensions of MS selfmanagement.…”

Drawing on Related Knowledge to Advance Multiple Sclerosis Falls-Prevention Research

“…In order to describe healthy aging from the perspective of the older person with MS, researchers interviewed 18 people who were 55 years of age and older with symptoms for 20 or more years. 54,55 Analysis of key themes emerging from the data showed that older people with MS highly valued four major factors that they felt contributed to health and life satisfaction as they aged 54 : work and social engagement, effective and accessible health care, healthy lifestyle habits, and maintaining independence at home.…”

“…Using a qualitative research approach, researchers found that study participants, despite reporting problems with balance and falls, did not wish to use walking aids or wheelchairs. 55 They explained that using these devices had two drawbacks from their points of view: first, canes, walkers, and wheelchairs were perceived as clear signs of disability that attracted sometimes unwanted attention from others; second, they considered the use of devices to be a sign of "giving up" or accommodating to MS. Participants felt that by using mobility aids, they would sacrifice potentially beneficial exercise effects of unaided (but often unsteady) walking on their balance and leg strength.…”

“…Based on clinical experience throughout the continuum of care and findings from qualitative research, [54][55][56] we know that fall circumstances change as one ages with MS and depend on mobility level 55 (Figure 1). During interviews with older people with MS, participants did not identify themselves vention intervention?"…”

Clinician's Commentary on Ploughman et al.

“…If the latter is the case, this would lend support to Ploughman and colleagues' hypothesis that over time, and after years of problem-solving and positive health care interactions, people with MS effectively apply self-management skills, including the attitudes and behaviours required to optimize emotional, social, and physical wellness. 1 For clinicians, assisting patients in this constructive journey to self-management is a positive shift in the therapeutic approach to patients with MS. As Ploughman and colleagues suggest, our role as physiotherapists is to expedite this process, earlier in the disease course if possible. 1 Life with MS is one example of a selfmanagement programme that promotes adjustment to MS and the skills required to live with this chronic, disabling disease.…”