Service users’ and parents/carers’ experiences of a paediatric chronic fatigue service: A service evaluation

Abstract

Objectives

This service evaluation explored the experiences of families receiving care in a paediatric chronic fatigue service. The evaluation aimed to improve service provision across paediatric chronic fatigue services more widely.

Methods

Children and young people aged 7–18 years (n = 25) and parents/carers (n = 25) completed a postal survey exploring experiences of a paediatric chronic fatigue service. Quantitative data were analysed descriptively, and qualitative data were analysed using thematic analysis.

Results

Most service usersand parents/carers (88%) agreed that the service met their needs, that they felt supported by staff, and most notably, a large portion (74%) reported the team increased their activity levels. A small number disagreed (7%) with statements relating to positive links with other services, ease of talking to staff and suitability of appointment type. The thematic analysis revealed three themes: help managing chronic fatigue syndrome, experience of professional support and accessibility of service. Families reported benefiting from increased understanding of chronic fatigue syndrome, learning new strategies, the team linking with schools, feeling validated and mental health support. Accessibility was a particular problem including the service location, setup of appointments and difficulty contacting the team.

Discussion

The evaluation presents recommendations for paediatric Chronic Fatigue services to improve service user experiences.

Keywords

chronic fatigue myalgic encephalomyelitis service evaluation service user feedback ME/CFS

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