Abstract
This doctoral research aimed to co-produce allied healthcare guidance to improve therapeutic care, self-management, and quality of life for children and young people (CYP) living with ataxia telangiectasia (A-T), a rare and complex neurodegenerative condition. Addressing significant gaps in non-medical care provision, the project was structured into four interrelated work packages (WPs), each contributing original insights and practical tools for families and professionals. WP1 involved a comprehensive scoping review of published and grey literature to map the existing evidence on allied health and nursing management of A-T related symptoms in CYP. The review synthesises 50 sources of evidence and highlighted effective interventions such as therapeutic exercise and respiratory training, resulting in the first best-practice guidance for allied health and nursing care in A-T. WP2 focused on the co-production of My A-T Pack, a family-owned, person-centred healthcare resource designed to support self-management, symptom tracking, and care coordination. Insights from focus groups with CYP and parents informed the content and design, with the final resource made available in both print and digital formats.WP3 developed a novel, home-based complex intervention tailored to the needs of CYP with A-T. Through collaborative consultations with families, clinicians, and allied health professionals, a multi-component programme combining adapted yoga and a bespoke breathing exercise movie was co-produced to support functional ability and respiratory health.WP4 explored the feasibility, acceptability, and perceived benefits of the intervention in a feasibility randomised trial involving six children. Findings demonstrated the intervention was both feasible and acceptable, with preliminary evidence of improved coordination, respiratory health, and overall well-being. Together, these four WPs offer the first co-produced, evidence-informed allied healthcare framework for CYP with A-T. The project delivers practical resources, original data, and new insights to inform clinical practice and empower families, laying the groundwork for future research and scalable intervention development
Document Type
Thesis
Publication Date
2025
Embargo Period
2025-05-22
Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License
Recommended Citation
Khan, M. (2025) Co-producing healthcare guidance for children and young people with ataxia telangiectasia (A-T) including the exploration and design of a home-based complex intervention. Thesis. University of Plymouth. Retrieved from https://pearl.plymouth.ac.uk/hp-theses/28
