Children's experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review and meta-ethnography of qualitative studies

Abstract

ObjectiveTo synthesis the qualitative studies of children's experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).DesignSystematic review and meta-ethnography.BackgroundCFS/ME is an important disabling illness, with uncertain cause and prognosis. As a result, children with CFS/ME can find themselves living with greater uncertainty and stigma, exacerbating the impact of the condition. There is a growing body of qualitative research in CFS/ME, yet there has been no attempt to systematically synthesis the studies involving children.MethodsStudies exploring the experiences of children diagnosed with CFS/ME, published or unpublished, using qualitative methods were eligible. MEDLINE, EMBASE, PsycINFO and CINAHL databases were searched as well as grey literature, reference lists and contacting authors. Quality assessment was done independently using the Critical Appraisal Skills Programme (CASP) checklist. Studies were synthesised using techniques of meta-ethnography.ResultsTen studies involving 82 children with CFS/ME aged 8–18 were included. Our synthesis describes four third-order constructs within children's experiences: (1) disruption and loss: physical, social and the self; (2) barriers to coping: suspension in uncertainty, problems with diagnosis and disbelief; (3) facilitators to coping: reducing uncertainty, credible illness narratives, diagnosis and supportive relationships and (4) hope, personal growth and recovery. CFS/ME introduces profound biographical disruption through its effects on children's ability to socialise, perform school and therefore how they see their future. Unfamiliarity of the condition, problems with diagnosis and felt stigma prevent children from forming a new illness identity. Children adopt coping strategies such as building credible explanations for their illness.ConclusionsPhysical, social, emotional and self-dimensions of life should be included when treating and measuring outcomes from healthcare in paediatric CFS/ME. There is a need for greater recognition and diagnosis of childhood CFS/ME, specialist advice on activity management and improved communication between health and education providers to help children cope with their condition.

Psychological and demographic factors associated with fatigue and social adjustment in young people with severe chronic fatigue syndrome/myalgic encephalomyelitis: a preliminary mixed-methods study

“…The findings support previous research which shows the negative impacts that symptoms of CFS/ME can have on a young person's life. Symptoms of CFS may mean that individuals with CFS have to miss large amounts of school, or give up valued and enjoyable activities, a consequence of which may be social isolation (Crawley & Sterne, 2009;Jelbert et al, 2010;Parslow et al, 2017). Many participants in this study reported a lack of awareness and understanding of CFS/ME by their peers, schools, healthcare professionals, and in the wider community.…”

“…This finding also supports existing research in which young people with symptoms of CFS/ ME report negative impacts of symptoms such as reduction in activity, school absence and difficulties maintaining social relationships. This is in addition to the negative emotional impact of CFS/ME and difficult feelings such as loss, isolation, and loneliness that are often reported by young people with CFS/ME (Jelbert et al, 2010;Parslow et al, 2017;Taylor et al, 2016). Previous research also suggests that having an illness like CFS/ME is associated with low mood and depression as well as anxiety, but the direction of causality is unclear (Bould et al, 2013;Taylor et al, 2016).…”

“…The symptoms of CFS/ME can have unwanted impacts upon several aspects of everyday life. Young people with CFS/ME may find themselves missing school, having dif-ficulties maintaining friendships, and/or dealing with strained family relationships (Burgess & Chalder, 2011;Parslow et al, 2017;Rangel et al, 2000;Sankey et al, 2006;Taylor et al, 2016). At its most severe, CFS/ME in young people can result in extremely high levels of disability, which can leave the young person bed-bound or unable to attend school (Rangel et al, 2000).…”

Health-related quality of life in adolescents with CFS/ME, a cross-sectional population based Norwegian study.

“…According to an earlier finding of no statistical evidence between depressive symptoms and low HRQoL in adolescents with CFS/ME [16], and that there is a lack of depression found in diagnostic evaluation of the patient group, it is tempting to assume that depressive symptoms may develope as result of living with CFS/ME. Adolescents with CFS/ME are not able to do the things they want to, and they suffer from loss, disruption and coping barriers [1,31,32,37]. Living with CFS/ME in adolescense require that the surroundings are aware and supportive in order to give the adolescents a potential to prevent depressive symptoms and gain hopes of an active and productive future [1].…”

Making sense: further studies of living with chronic illness

“…There is now a strong body of research, especially amongst children and young people, on the biographical disruption associated with myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) and also the development of hope for recovery (Parslow et al . ). In this study of adults, the authors focus on the experiences of those in their sample, and what it means to ‘recover’.…”