"From chaos and insecurity to understanding and coping": on a group programme for CFS (Pinxsterhuis)

[Dolphin]

http://www.tandfonline.com/doi/abs/10.1080/03069885.2014.987725#.VRL7h46sWH8

British Journal of Guidance & Counselling

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

Irma Pinxsterhuisab*, Elin Bolle Stranda, Eva Stormorkenc & Unni Sveende
Publishing models and article dates explained

Received: 30 Jun 2014
Accepted: 30 Oct 2014
Published online: 11 Dec 2014

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

 

[Dolphin]

I found this sympathetic enough. It didn't have any psychobabble that I can recall.

Sounds like they were more looking for praise rather than criticisms or problems:

The semi-structured interview guide covered topics such as perceived helpfulness of the different sessions, perceived benefits from the whole programme, ideas regarding the illness, psychological coping processes and applied coping strategies.

I don't recall any major criticisms being mentioned.

Also, there is a chance that participants might have been more inclined not to criticise and/or to praise:

One important limitation of our study was that the first author had two individual consultations with some of the participants prior to the patient education programme and was involved in the programme as a teacher during one of the eight meetings, which may have influenced the extent to which the participants felt free to express their negative experiences. Qualitative research requires an accurate description of the participants’ experiences. Therefore, the participants were informed that their anonymity was assured and that participation in the study would not have consequences for future treatment at our hospital. In addition, the relationship between the researcher and the participants can become pseudo-therapeutic and the researcher may have difficulties in separating own experiences from those of the participants; this may result in subjectivity (Jootun et al., 2009). Therefore, the first author had to make an effort to focus solely on the participants’ experiences to produce theoretical understanding and sensitivity (Jootun et al.,2009). In this way, she was able to construct meaning that would not be apparent to an external moderator.

 

[Dolphin]

Some had not received any information or help after being diagnosed, whereas others had received advice that made them feel worse:‘It worked for me before that if I used my body, I gained energy. Physicians told me the same thing, that you have to activate yourself, but that worked out very badly’.