Couples' experiences of interacting with outside others in Chronic Fatigue Syndrome: a qualitative study

Objectives
Social isolation and stigma are frequently reported by patients with Chronic Fatigue Syndrome (CFS/ME) and relationships in the home environment with those close to the patients (their ‘significant others’) may thus be particularly important. Rather little attention has yet been paid to the beliefs and experiences of ‘significant others’ themselves in this context. This study sought to explore in-depth the beliefs and experiences of both patients and ‘significant others’ in relation to CFS/ME.

Methods
In-depth interviews using a semi-structured interview schedule designed around the core constructs of the Common-Sense Model of self-regulation (CSM) were conducted with two patients with CFS/ME and their spouses. Interpretative Phenomenological Analysis (IPA) was used to analyse interview data.

Results
Experiences of social interactions in relation to CFS/ME with others outside of the relationship dyad emerged as a key issue for all participants when reflecting on their experiences of living with the condition. These concerns are presented under two themes: interactions with healthcare professionals and interactions with the social world.

Conclusions
It is evident that significant others play an important role in the lived experience of CFS/ME. For both patients and significant others, the wider social world and interactions with outside others may be important influences on dyadic coping in CFS/ME. Both future research and treatment interventions could usefully include a ‘significant other’ perspective.