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Development of a group-based self-management programme for individuals with chronic fatigue syndrome

Dolphin

Senior Member
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17,567
http://www.tandfonline.com/doi/abs/10.3109/11038128.2014.985608

Scandinavian Journal of Occupational Therapy
Volume 22, Issue 2, 2015

Development of a group-based self-management programme for individuals with chronic fatigue syndrome: a pilot study

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DOI:
10.3109/11038128.2014.985608
Irma Pinxsterhuisa*, Live Lange Hellumb, Hilde Hassum Aannestadc & Unni Sveend
pages 117-125

Publishing models and article dates explained
  • Received: 6 Mar 2014
  • Accepted: 4 Nov 2014
  • Published online: 12 Jan 2015


Abstract

Objective:

The aim of the study was to develop a group-based self-management programme for individuals with chronic fatigue syndrome (CFS) by using the participants’ experiences with the initial version of the programme, which intends to promote coping with the illness in a primary healthcare setting.

Methods:


An initial programme was developed, based on self-efficacy theory and the concepts of client-centred practice and empowerment.

Subsequently, the programme was tested and further developed by drawing on the participants’ experiences with the programme.

Focus-group interviews were applied.

The interviews were analysed using thematic analysis.

Results:


The initial programme was found to be feasible, although several modifications regarding the content and practical organization of the programme were proposed.

Conclusion:


In line with the participants’ experiences, the final self-management programme was developed, which includes short presentations of eight topics, exchange of experiences among participants, goal-setting, construction of action plans, and relaxation exercises, in addition to a meeting for relatives.

The programme will be provided in eight biweekly sessions and be led by juxtaposed peer counsellors and occupational therapists.

The effects of the final programme will be evaluated in a randomized controlled trial.

Key words
 

Dolphin

Senior Member
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17,567
To put this in some context: one of the three authors is with the Norwegian ME Association.

They seem to be influenced a bit by Renee Taylor and Lenny Jason in the US (see references 10-12)

10. Taylor RR. Quality of life and symptom severity for individuals with chronic fatigue syndrome: Findings from a randomized clinical trial. Am J Occup Ther 2004;58:35–43.

11. Taylor RR, Thanawala SG, Shiraishi Y, Schoeny ME. Longterm outcomes of an integrative rehabilitation program on quality of life: A follow-up study. J Psychosom Res 2006;61: 835–9.

12. Taylor RR, Jason LA, Shiraishi Y, Schoeny ME, Keller J. Conservation of resources theory, perceived stress, and chronic fatigue syndrome: Outcomes of a consumer-driven rehabilitation program. Rehabil Psychol 2006;51:157–65.


Development of the initial programme

An essential early task is to develop a theoretical understanding of the likely process of change, by drawing on existing evidence and theory (20).

The initial self-management programme is based on the concepts of client-centred practice and empowerment, like the earlier mentioned CFS Empowerment Project (10-12). In client-centred practice there is a strong emphasis on a collaborative partnership, respect for the client, facilitating choice, and involving the client in determining occupational goals that emerge from his or her choices (23). In addition, it stresses the need to equalize power in the clien–therapist relationship (23). Client-centred practice has been shown to improve levels of satisfaction with services (24) and the ability of patients to recall their goals (25). In addition, client-centred approaches have been reported to improve symptoms and functional outcomes (25,26). Empowerment refers to providing individuals with the knowledge and resources to take control of their lives (27), including the promotion of self-reliance and the use of peer networks for solving problems (28).

In addition, the initial programme is based on the self-efficacy theory, which states that“perceived selfefficacy refers to beliefs in one’s capabilities to organize and execute the courses of actions required to produce given attainments”[ (29), p. 3]. It has been shown that self-management programmes for individuals with chronic illness based on the self-efficacy theory may lead to improvements in health behaviour, health status, and self-efficacy (30-32). To our knowledge there are no publications addressing interventions based on self-efficacy theory for individuals with CFS.
 
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Dolphin

Senior Member
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17,567
I would have preferred a stronger statement about pacing:

Pacing of activities was emphasized by the participants as an important coping strategy. The usefulness of pacing is disputed among scientists, but several studies support the finding in our study (1,2,10). Pacing may therefore be included as a topic in the final programme.
 

Dolphin

Senior Member
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17,567
Here's what they came up with (for going forward)

Table II. Content of the final programme.

Eight biweekly sessions of 2.5 hours’ duration

Day 1: Information about the programme: content and form
Participants and leaders introduce themselves
Educational presentation about current medical approaches
Educational presentation about self-management
Discussing relevant individual goals

Day 2: Educational presentation on one of the topics* with exchange of individual experiences
Relaxation exercise
Selecting individual goals and constructing action plans to achieve these goals

Day 3–8: Educational presentation on one of the topics* by the leaders with exchange of individual experiences
Relaxation exercise

Participants present and evaluate their individual goals and action plans with feedback/problem-solving
Constructing action plans
One meeting for relatives

*Topics day 2–8: activity pacing and energy conservation, sleep and relaxation, physical exercise, nutritional approaches, economic selfsufficiency, personal relationships, and available treatments. Presentations are made by healthcare professionals at the CFS/ME centre, Oslo University Hospital.
 

Dolphin

Senior Member
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No evidence of blaming patients or invoking CBT school-type views.

Exercise isn't discussed really in the text though it does get mentioned that there was and there will be in future a session on "physical exercise".
 

Dolphin

Senior Member
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17,567
I thought that was good:
They also suggested that it should be emphasized that action plans can focus on doing something new, refraining from doing something that does not promote coping or doing things in a different way.

Though they're just reporting what the patients came up with.
 

Dolphin

Senior Member
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17,567
The original format was that the patients/participants themselves would each (or with one or two others) give a presentation on a topic. However, they are moving away from this:

In this study, the preparation of presentations was reported to be too exhausting. This is not a surprising result as CFS is characterized by chronic fatigue and cognitive impairments. In addition, the participants felt unsure with regard to the extent they could trust the information they had found. Thus, they proposed that healthcare professionals at the CFS/ME centre make short presentations covering fixed topics. Using presentations made by external healthcare professionals may provide “quality assurance” of the imparted information, and at the same time allow enough time for exchange of information and experiences that will meet the participants’particular needs. The proposed change might strengthen the client centredness of the intervention, as adaptation of the intervention might meet the participants’ needs in a better way and might enable them to make better informed choices (23). However, this change entails a need for updating the presentations to include new knowledge.
The problem with this now is that one can end up with CBT school-type presentations.
 

Effi

Senior Member
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1,496
Location
Europe
This looks a lot better than the usual CBT-GET only approach, in terms of listening to patients input, focusing on pacing, etc. But this kind of course would only be possible for mild me patients: getting there, sitting for a couple of hours, concentrating, talking. Unless they also offer it via online streaming or sth.

The part about the info presentations could be a bit tricky - on PR what I've learned most of all is that everybody is different, things work differently for different subsets. So the danger is that they'd put foward one single view for all participants to follow (because they trust the organizers as they are health professionals) and it wouldn't work for everyone or even make some patients worse off.

I like the part where they say action-planning could also mean doing LESS of an activity, or doing it differently. Sounds more like pace-planning, which could be interesting, certainly for new pwme.
 

Scarecrow

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But this kind of course would only be possible for mild me patients: getting there, sitting for a couple of hours, concentrating, talking.
People with mild ME are more likely to be working. This is not something that I would even contemplate doing on top of a job. I might have been interested when moderate - except that I can't stand this kind of group activity.
 

Effi

Senior Member
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Location
Europe
People with mild ME are more likely to be working. This is not something that I would even contemplate doing on top of a job.
You're so right, I hadn't thought of that. Even if you're mild, you'd be too exhausted to do this on top of a workday. It's just that you get so little out of it. Most of the things they offer you can easily find online.
 

Hutan

Senior Member
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1,099
Location
New Zealand
It's a step in the right direction at least. Yes, sessions of 2.5 hours are way too long. Bi-weekly - does that mean twice a week? If so, that's too frequent.

If it was done properly with no CBT/GET/ correcting false illness beliefs nonsense, I could see it being useful particularly for teenagers with ME/CFS. It could be quite validating, especially with the session for relatives to help them understand what the illness involves too.

Even for adults with ME/CFS, it could be useful. It takes a while when you first become ill to work out what is going on. For example, to pick up the information about orthostatic intolerance. GP's don't have the knowledge to help. Yes, I imagine it could be adapted to skype-type sessions for the house-bound.

The usefulness of the sessions depends a lot on the quality of the facilitators.
 

Effi

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Location
Europe
The usefulness of the sessions depends a lot on the quality of the facilitators.
I think that is the key to it being either helpful or detrimental to patients. My experience is that the chances of encountering a health professional who is in the know are very slim. So I wonder how this is going to work out...

I wonder why no one has come up with the idea of doing this kind of course via an online platform. It could be private, so that only participants can enter. They could still monitor it, if they feel that is important. People could get information, do relaxation exercises, and be in contact with fellow patients without having to put in the energy of getting there and sitting on a chair for 2.5 hours. If their approach works, I expect patients to be very cooperative online. Physically attending sessions doesn't mean you're going to get more out of them, especially not so when you're this ill.
 

Dolphin

Senior Member
Messages
17,567
I wonder why no one has come up with the idea of doing this kind of course via an online platform. It could be private, so that only participants can enter. They could still monitor it, if they feel that is important. People could get information, do relaxation exercises, and be in contact with fellow patients without having to put in the energy of getting there and sitting on a chair for 2.5 hours. If their approach works, I expect patients to be very cooperative online. Physically attending sessions doesn't mean you're going to get more out of them, especially not so when you're this ill.
There are some group online courses offered at: http://www.cfidsselfhelp.org/online-courses
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Those courses look good, but the communication is by email and the groups could consist of people from all around the world. I think there is some benefit in local courses with face-to-face contact, even if done using online video.

Yes, there are support groups that meet for coffee that are run by ME/CFS organisations. But for teenagers especially, it's probably good to have something with more structure initially. The courses proposed in the paper @Dolphin posted would do that and allow the participants to identify some fellow participants that they would like to keep in touch with after the course.