Illness Beliefs in Chronic Fatigue Syndrome: A Study Involving Affected Adolescents and their Parents

Abstract

Background: The aim of the study was too investigate the beliefs of young people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and their parents, about illness causes and management. Method: Twenty‐one young people with CFS/ME and their parents participated in an open‐ended interview. Results: Infective causes were identified by the majority of respondents, and psychological ones by a minority. Many highlighted reducing activity and resting in symptom management. Positive and negative experiences of psychiatric and psychological treatments were recorded. Conclusion: Professionals should carefully explore the illness related beliefs of young people with CFS/ME and parental beliefs in order to agree treatment plans.

‘Sometimes it feels as if the world goes on without me’: adolescents' experiences of living with chronic fatigue syndrome

“…There is also a need for patient with CFS to be recognised and listened to, both by professionals and by society (Richards et al . ). A previous study of adolescent CFS pointed out five different challenges related to being ill.…”

Chronic fatigue syndrome: a qualitative investigation of young patient's beliefs and coping strategies

“…The few studies conducted on children and young patients with CFS/ME have found similar attributions and coping patterns as with adults [11]. In this explorative study, our aim was to adapt a qualitative methodology to the questions of attribution and coping strategies by using a semi-structured interview.…”

“…As the understanding of CFS/ME in young people is relatively poor and, with a few exceptions [10,11], qualitative research on this patient population is meagre, existing literature and national guidelines for young patients with CFS/ME have emphasised the need for further quantitative and qualitative research [12][13][14]. As information obtained from research into the adult population is not necessarily applicable to young patients [11,12], and beliefs of the patients in their own terms is not necessarily best captured by quantitative inquiry using standard questionnaires, we wanted to explore in-depth the illness experience of young patients with CFS/ME by using a qualitative methodology. More specifically, we wanted to investigate the nature and function of two aspects of adolescents' illness experience: attribution and coping strategies.…”

Social participation in young people with nonepileptic seizures (NES): A qualitative study of managing legitimacy in everyday life

“…Several studies have described how young people with NES and other types of MUS feel that their identity is under threat when their credibility is questioned [4,24]. They describe a lack of trust from the healthcare services, and difficult feelings due to the contentious and uncertain condition [4,[24][25][26][27].…”