"I had to give up so, so much": a narrative study to investigate the impact of Chronic Fatigue Syndrome (CFS) on the lives of young people.

Abstract

The aim of this research was to explore the experiences of Chronic Fatigue Syndrome among a small group of adolescents, through three research questions: What are the personal experiences of young people with CFS – how does the condition affect their daily lives – including educational, social and psychological perspectives. Secondly, how does CFS impact family life – how does the condition influence not only the lives of sufferers but also those closest to them? Finally, can the knowledge base be deepened to help guide practice for those caring for the needs of adolescent CFS sufferers and their families? The study used a narrative approach in an attempt to capture young people‘s stories, and to provide a window of insight into the personal impacts of CFS on the lives of individuals. Open-ended interviews with eight young CFS sufferers (11 to 18 year olds) were employed that explored personal experiences of CFS. In addition four email interviews were conducted with primary caregivers to explore the impacts of CFS from a carers perspective. Five themes arose from a generic qualitative analysis of data - adolescent CFS is experienced as: (1) having to adapt to debilitating physical symptoms; (2) living with changes in family relationships and loved one‟s life experiences; (3) living with isolation and a disruption to a full and satisfying teenage life; and (4) feeling misunderstood and judged. Also a fifth and universal overarching theme, that CFS in adolescents is experienced as having to put life on hold. This is a major life adjustment, not only for the individual sufferers but for their family members also, who have to adapt to a new way of life accommodating for the limitations of one member. The implications for clinical practice and further research are discussed.