"The child's got a complete circle around him". The care of younger children (5-11 years) with CFS/ME. A qualitative study comparing families', teachers' and clinicians' perspectives'.

Publisher: Hindawi in collaboration with John Wiley & Sons, Inc Country of Publication: England NLM ID: 9306359 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1365-2524 (Electronic) Linking ISSN: 09660410 NLM ISO Abbreviation: Health Soc Care Community Subsets: MEDLINE

Publication: [London] : Hindawi in collaboration with John Wiley & Sons, Inc.
Original Publication: Oxford : Blackwell Scientific Publications, c1993-

Caregivers/*psychology ; Fatigue Syndrome, Chronic/*epidemiology ; Health Personnel/*psychology ; Parents/*psychology ; School Teachers/*psychology; Child ; Child, Preschool ; Family ; Female ; Humans ; Male ; Patient-Centered Care/organization & administration ; Professional Role ; Qualitative Research

Society needs to improve the care of children with complex needs. Guidelines recommend integrating care across health and educational settings, however, there is little research on whether this is achieved or how this can be done in practice. Our aim was to address this gap by examining how the care of children (aged 5-11 years) with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) is shared across home, education and health settings, in order to generate recommendations for integrating care. We undertook semi-structured interviews with families (22 participants), teachers (11 participants) and healthcare providers (9 participants), analysing the data thematically and comparatively. Our analysis of the data was informed by a socio-ecological perspective as we sought to understand the complexity of the relationships and systems around the child. The first theme focuses on the child ("individual level"); child-centred care is seen as essential whilst acknowledging that the child has limited capacity to manage their own care. The second theme presents the distinct roles of parents, teachers and clinicians ("interpersonal and organisational levels"). The third describes how these three levels interact in the management of the child's care, in the context of the health and education systems and policies ("policy levels"). The fourth explores optimal ways to integrate care across home, school and clinical settings. In conclusion, there is opportunity to support a child with complex health needs by targeting the systems around the child; parents, teachers and clinicians, as well as education and health policy that can enable shared-care. Involving schools in assessment, communicating diagnosis across settings and using a stepped-care approach to integrated care may be beneficial. Further work is needed to explore these recommendations, with attention to the policy factors that may act as barriers and enablers.
(© 2020 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)

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DRF-2017-10-169 United Kingdom DH_ Department of Health; SRF-2013-06-013 United Kingdom DH_ Department of Health

Keywords: child health; chronic Illness in childhood; paediatrics; qualitative research; socio-ecological theory

Date Created: 20200611 Date Completed: 20210505 Latest Revision: 20210505

20240628

10.1111/hsc.13029

32519359