The impact of managing a child's chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) on family relationships

• Main Author: Haig-Ferguson, A.
• Published: University of the West of England, Bristol 2014
• Subjects: 362.196
• Online Access: http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.619061

Although there is a large body of research literature concerning the impact of childhood chronic illness on family relationships, very little of this has specifically focussed on the impact of childhood Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME). The current study therefore aims to investigate the impact of having a child with CFS/ME on family relationships from the perspective of parents. This study takes a qualitative approach. Semi-structured interviews were used to explore 18 parents’ experiences of having a child with CFS/ME and the impact this has had on family relationships. Interview data were transcribed and analysed using thematic analysis. The analysis led to the identification of 5 main themes: “Long and Difficult Journey”, “Uncertainty”, “Isolation and Restriction”, “Focus on the unwell person at the expense of family life” and “Parental roles”. They felt that life had become a constant struggle and often felt exhausted. They felt uncertainty, isolation and restriction. These parents talked about feeling like family life had become focussed on their unwell child, such that some expressed a need to escape from the situation. They also described how, as a consequence of managing their child’s CFS/ME, family members could often feel marginalised and the illness could be seen as a destructive force. However, many parents also described working as a team and feeling that family relationships had benefitted in some way. The results of this study are in line with findings of other studies into other chronic illnesses. In addition, this is the first study to focus exclusively on the impact of CFS/ME on family relationships from the perspective of the parents, and is unique in that there is a dual focus on both mothers and fathers. Clinicians should be aware that parents of children with CFS/ME may need additional support, such as information as to what to expect at various stages of the illness and where to access the relevant support.