Centre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol, Bristol, UK.
Department of Psychology, University of Bath, Bath, UK.
BMJ Open. 2017 Jan 13;7(1):e012633. doi: 10.1136/bmjopen-2016-012633.
To synthesis the qualitative studies of children's experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).
Systematic review and meta-ethnography.
CFS/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.
Studies exploring the experiences of children diagnosed with CFS/ME, published or unpublished, using qualitative methods were eligible.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.
Ten 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.
Physical, 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.
综合儿童慢性疲劳综合征/肌痛性脑脊髓炎（CFS/ME）体验的定性研究。
系统评价和元民族志。
CFS/ME 是一种重要的致残性疾病，病因和预后不确定。因此，患有 CFS/ME 的儿童可能会发现自己生活在更大的不确定性和耻辱感中，从而加剧病情的影响。CFS/ME 中有越来越多的定性研究，但尚未有人试图系统地综合涉及儿童的研究。
使用定性方法探索被诊断患有 CFS/ME 的儿童的体验的研究，无论是否已发表，均符合条件。检索了 MEDLINE、EMBASE、PsycINFO 和 CINAHL 数据库以及灰色文献、参考文献列表和联系作者。使用批判性评估技巧计划（CASP）检查表独立进行质量评估。使用元民族志技术对研究进行综合。
纳入了 10 项涉及 82 名年龄在 8-18 岁的 CFS/ME 儿童的研究。我们的综合描述了儿童体验中的四个三级结构：（1）中断和丧失：身体、社会和自我；（2）应对障碍：不确定性悬而未决、诊断问题和怀疑；（3）应对促进因素：减少不确定性、可信的疾病叙述、诊断和支持性关系；（4）希望、个人成长和康复。CFS/ME 通过对儿童社交、上学能力的影响，以及他们对未来的看法，导致了深刻的传记中断。对疾病的不熟悉、诊断问题和感受到的耻辱感，阻碍了儿童形成新的疾病身份。儿童采用应对策略，例如为自己的疾病建立可信的解释。
在治疗和衡量儿科 CFS/ME 的医疗保健结果时，应包括身体、社会、情感和自我生活维度。需要更广泛地认识和诊断儿童 CFS/ME，提供有关活动管理的专业建议，并改善卫生和教育提供者之间的沟通，以帮助儿童应对他们的病情。
