Investigating Access to Specialist Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) Services for Ethnic Minority Children

  • Catherine Linney

Student thesis: Doctoral ThesisDoctor of Philosophy (PhD)

Abstract

Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a relatively common, complex and disabling condition. CFS/ME is more common in ethnic minority adults, and is likely to be more common in ethnic minority children, but very few ethnic minority children access specialist CFS/ME services.

The aim of this PhD was to explore both the barriers and facilitators ethnic minority children face in accessing CFS/ME services, with an aim to make access more equal. Different methods were used: 1) systematic review, 2) data analysis, 3) qualitative interviews with young people, parents, community ‘influencers’, healthcare professionals, and 4) focus groups with community members.

I conducted a mapping systematic review to: (1) understand barriers ethnic minority children experience when accessing specialist medical services for chronic or mental healthcare conditions, (2) interventions to improve access. This synthesis describes the most common barrier to be ‘Knowledge’ but ‘Cultural Factors’ and ‘Stigma’ were also important. Interventions that focus on reducing multiple access barriers showed the most promise. This review also highlighted the role of facilitators, which informed the PhD.

Data analysis of the baseline characteristics of children who accessed specialist paediatric CFS/ME services and were recruited into a clinical trial showed only 3.93% of children described themselves as an ethnic minority, however data capture methods suggest ethnicity may not be accurately recorded.

Interviews with 25 participants (3 young people with CFS/ME; 5 family members, 14 community leaders and 3 medical professionals), and focus groups with 23 community participants were conducted and thematic analysis identified multiple barriers to accessing CFS/ME services, with three key barriers (‘Conceptualisation of CFS/ME’; ‘Cultural Factors’; and ‘Going to the Doctors’) and few facilitators. Terminology was also important, with “community leaders” declining the term “leader”.

Participants suggested the following ideas to improve access: 1) knowledge and awareness building initiatives to increase understanding of CFS/ME and reduce stigma and 2) healthcare system improvements, including more General Practitioner (GP) consultations, shorter waiting times, and staff of different ethnicities. Future work is needed to pilot these ideas to improve access and develop interventions.
Date of Award2 Dec 2021
Original languageEnglish
Awarding Institution
  • University of Bristol
SupervisorRebecca Barnes (Supervisor), Sabi M Redwood (Supervisor) & Esther Crawley (Supervisor)

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