Friday, 4 January 2013

Research: the path to self-managment

#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."

9 comments:

  1. Very interesting and encouraging. I (and I'm sure most PwMS) have no desire to be dependent on others and wish to self manage - or look after themselve (!) - just like anyone else. I would encourage you to find a way to continue with your work, and yes, such a lot of the 'issues' are about social aspects (in the broadest sense) so yes, they do have very great value!
    'Accept and adapt' is a mantra I adopted a few years ago, and I apply it with quite a lot of success. Moving away from the medical model to the social model is a big step in the right direction.
    Thanks

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  2. I worked out for myself that self management was the key. Each person suffering from MS should put themselves at the centre and build a network of support around them. I don't think this should be engineered, merely understood and rolled out by GP's and MS nurses. GG should use his valuable time on research rather than something that should be a simple concept rather than a system.

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  3. Peter in hindsight I agree with you - it is common sense, after all, although not everyone has this. Yes, GG - please focus on finding a cure! Anon 9.04

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  4. Dead right. The 'pluses' for me have been, frankly, being fairly intelligent, persistent and having enough cash to experiment my way through treatments both traditional and complementary. If a patient isn't that bright and/or doesn't have the means to experiment, it's much tougher. The services on offer are still a postcode lottery.

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  5. You know what? The American MS Society are so much more attentive than what either this blog or the UK MS Society is. I love their short video launched to kick off the year in a more optimistic mood (http://www.youtube.com/watch?v=UXfxhlFik4o&feature=player_embedded). It almost makes you feel like good things may eventually happen for progressive MSers.

    Prof G, no doubt you will now say they are contorting expectations, but we ache for silver linings. You don't realize how important the notion of 'hope' is to us MSers.

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    1. The MS Soc is much more attentive...

      The MS Soc can be proactive because they have a broader picture of what they are funding and what is going on.
      They have the machinery....we are a couple/few of Joe Schmos with zero resource and are more reactive-aseessing what is today's research news.

      Hope is great , but if we are not realistic it bites you

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  6. Every MSer owes it to themselves to listen to Jim Sweeney's candid, lively account of living with multiple sclerosis. It was broadcast on BBC Radio 4 and you can listen to it on iplayer.

    http://www.bbc.co.uk/radio/player/b01pjkxb

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  7. This Blog is the best tool so far to promote self-management and wellness.

    "I am still on a mission to design a self-management system for MSers that is engaging, evidence-based and that promotes wellness."

    That is wonderful, can we help?

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    Replies
    1. Barbara, the blog is not a self-management tool. It is simply to give MSers and their families information on research. Most of the posts are too technical. I was thinking about something focused.

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