{"id":11417,"date":"2017-01-18T10:38:03","date_gmt":"2017-01-18T10:38:03","guid":{"rendered":"http:\/\/wames.org.uk\/cms-english\/?p=11417"},"modified":"2017-01-18T10:38:03","modified_gmt":"2017-01-18T10:38:03","slug":"childrens-experiences-of-cfsme","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/childrens-experiences-of-cfsme\/","title":{"rendered":"Children’s experiences of CFS\/ME"},"content":{"rendered":"

Review abstract:<\/strong><\/h3>\n

Objective:
\nTo synthesis the qualitative studies of children’s experiences of\u00a0chronic fatigue syndrome\/myalgic encephalomyelitis (CFS\/ME).<\/p>\n

Design:
\nSystematic review and meta-ethnography.<\/p>\n

Background:
\nCFS\/ME is an important disabling illness, with uncertain cause and\u00a0prognosis. As a result, children with CFS\/ME can find themselves living\u00a0with greater uncertainty and stigma, exacerbating the impact of the\u00a0condition. There is a growing body of qualitative research in CFS\/ME,\u00a0yet there has been no attempt to systematically synthesis the studies
\ninvolving children.<\/p>\n

Methods:
\nStudies exploring the experiences of children diagnosed with CFS\/ME,\u00a0published or unpublished, using qualitative methods were eligible.\u00a0 MEDLINE, EMBASE, PsycINFO and CINAHL databases were searched as well as\u00a0 grey literature, reference lists and contacting authors. Quality\u00a0assessment was done independently using the Critical Appraisal Skills\u00a0Programme (CASP) checklist. Studies were synthesised using techniques of\u00a0meta-ethnography.<\/p>\n

Results:
\nTen studies involving 82 children with CFS\/ME aged 8-18 were included.\u00a0Our synthesis describes four third-order constructs within children’s\u00a0experiences: (1) disruption and loss: physical, social and the self; (2)\u00a0barriers to coping: suspension in uncertainty, problems with diagnosis\u00a0and disbelief; (3) facilitators to coping: reducing uncertainty,
\ncredible illness narratives, diagnosis and supportive relationships and\u00a0(4) hope, personal growth and recovery. CFS\/ME introduces profound\u00a0biographical disruption through its effects on children’s ability to\u00a0socialise, perform school and therefore how they see their future.<\/p>\n

Unfamiliarity of the condition, problems with diagnosis and felt stigma\u00a0prevent children from forming a new illness identity. Children adopt\u00a0coping strategies such as building credible explanations for their\u00a0illness.<\/p>\n

Conclusions:
\nPhysical, social, emotional and self-dimensions of life should be\u00a0included when treating and measuring outcomes from healthcare in\u00a0paediatric CFS\/ME. There is a need for greater recognition and diagnosis\u00a0of childhood CFS\/ME, specialist advice on activity management and\u00a0improved communication between health and education providers to help\u00a0children cope with their condition.<\/p>\n

Strengths and limitations of this study<\/strong><\/p>\n