#MSBlog: Self-management and wellness; a research theme for 2013?
Ploughman et al. The path to self-management: a qualitative study involving older people with multiple sclerosis. Physiother Can. 2012 Winter;64(1):6-17.
Purpose: This qualitative study sought to explore older people’s experience of ageing with MS (MS) and to describe the natural history of self-management from their points of view.
Methods: 18 MSers 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. Self-determination, 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.
“Very few scientists, or clinicians for that matter, give the social sciences light of day. This type of work is very important and changes the way you look at things. I have been trying to promote self-management and wellness for several years but have had difficulty implementing it within the NHS. The current healthcare framework is very antiquated and was designed in a different era when the healthcare challenges were very different to today. I am still on a mission to design a self-management system for MSers that is engaging, evidence-based and that promotes wellness. It’s finding the time to do it that is my problem.”