A fatigue management programme for persons with multiple sclerosis: development, theory and practical considerations

Abstract

Background: Fatigue in multiple sclerosis (MS) is what most interferes with usual activities such as self-care, child-care, work and community engagement and contributes to disability and depression. Fatigue intensifies the other symptoms of MS, thereby making everyday life more challenging. Self-management or cognitive behavioural approaches and programmes are argued to be effective for managing fatigue in MS. However, there was no such manualised or accessible approach available for people with MS in New Zealand (NZ).

Objectives: This report outlines how people with MS in NZ were included, via Participatory Action Research (PAR), in the development of the fatigue self-management programme ‘Minimise Fatigue, Maximise Life’ (MFML), so that it had relevance and meaning to them. It also discusses the theories drawn on for developing the programme, and presents considerations for the programme for use in NZ and elsewhere.

Major findings: Use of PAR facilitated a positive experience for people with MS, the end users of the programme. It enabled the principles of self-efficacy, self-management, and self-determination to underpin the programme via the sharing of knowledge through their partnership with healthcare professionals. However, the research undertaken to date suggests the need for more consideration of ways to support attendees to maintain behaviour change over time.

Conclusions: PAR was a useful approach for developing the fatigue self-management programme. Future development of the programme could entail use of online technology to deliver the programme. Consideration for supporting ongoing behaviour change is required. Adaptation of the programme has potential for use with people with long-term conditions other than MS.

Keywords:

• Fatigue
• Multiple sclerosis
• Self-care
• Health education
• Programme development

Acknowledgements

We wish to acknowledge sincerely the individuals who worked with us on the development and evaluation of the Minimise Fatigue Maximise Life Programme. We would also like to thank the Multiple Sclerosis and Parkinson’s Society of Canterbury (Inc.) for their support and encouragement in developing the programme. Thanks must also go to the Maori Women’s Welfare League for advice and encouragement along the way.