From chaos and insecurity to understanding and coping: experienced benefits of a group-based education programme for people with chronic fatigue syndrome

Abstract

The aim of this study was to elicit participants' experiences with a multidisciplinary patient education programme and their views regarding the usefulness of the programme. Focus group interviews were conducted with 10 participants immediately and nine months following participation in the programme and analysed using thematic analysis. Initially, the participants experienced confusion and insecurity regarding coping with the illness. Participation in the programme appeared to promote understanding, acceptance and coping through gaining greater knowledge, learning coping strategies and exchanging experiences, as well as receiving understanding and acceptance. Thus, the programme was experienced to be a beneficial intervention. However, the participants expressed a need for more guidance or follow-up to maintain the practice of coping strategies for better coping with their illness.

Keywords:

• chronic fatigue syndrome
• patient education
• positive emotions
• coping
• qualitative research

Acknowledgements

We would like to thank Barbara Baumgarten-Austrheim for inclusion of the participants and the participants who shared their experiences for this study.

Disclosure statement

The authors declare that there is no conflict of interest.

Funding

This work was supported by the Norwegian Directorate of Health [grant number: 2009003686].

Notes on contributors

Irma Pinxsterhuis, OT, MSc, is a Ph.D. candidate at Faculty of Medicine, University of Oslo, and works at the CFS/ME centre at Oslo University Hospital.

Elin Bolle Strand is a specialist in clinical community psychology. She obtained her Ph.D. in health psychology at the Department of Medicine, University of Oslo. She is leader of the research group at the CFS/ME Centre and advisor at the National Advisory Unit for CFS/ME at Oslo University Hospital.

Eva Stormorken, RN, CRNA, MNSc, is a Ph.D. candidate at the Department of Nursing Science, Institute of Health and Society, University of Oslo. She worked as a nurse anaesthetist at Moss Hospital, Norway, before she worked as an assistant professor at Østfold University College, Faculty of Health, Section of Nursing.

Unni Sveen is a professor of occupational therapy at the Oslo and Akershus University College of Applied Sciences. She is also a senior researcher at the Oslo University Hospital, within the field of rehabilitation research.

Additional information

Funding

Funding: This work was supported by the Norwegian Directorate of Health [grant number: 2009003686].