Purpose
To explore experiences of chest health in children and young people with cerebral palsy, through the perspectives of children, their families, and community professionals.
Materials and Methods
We conducted a qualitative study using online, telephone, and in-person semi-structured interviews with seven children/young people, ten parents/carers, and sixteen community professionals between October 2024 and March 2025. Interviews lasted 30 to 60?min, were audio-recorded, transcribed verbatim, and analysed using inductive framework analysis.
Results
Seven themes were identified: navigating my usual self; thinking beyond my lungs; proactively watching; partnerships in managing illness; a life less valued by others; falling short in care; and priorities for the future. Accounts illustrated interacting, whole-child factors shaping vulnerability, recognition, and trajectories of chest health. Familiarity with the individual child provided critical knowledge for detecting meaningful change. These experiences were situated within systems lacking appropriate monitoring and diagnostic tools, specialist pathways, and clinical leadership, alongside deficit-based assumptions of inevitable decline rather than preventable, treatable illness.
Conclusion
Findings highlight the need for proactive, rights-based chest health care that integrates individual child familiarity with robust monitoring, timely diagnostics, and clinical leadership. Further research is required into effective, equitable neuro-respiratory care pathways, feasible outcome measures, and proactive community service models.
IMPLICATIONS FOR REHABILITATION
Familiarity with the child’s “usual self” is central to recognising meaningful changes in chest health for children with cerebral palsy.
Clinicians/therapists should consider interacting multiple factors beyond the lungs, contributing to chest health presentations in the context of the whole child.
Improved systemised approaches to monitoring, diagnostic tools, specialist pathways, and clinical leadership are needed to strengthen chest health care across rehabilitation services.
Clinicians/therapists should challenge deficit-based assumptions of inevitable decline and highlight the need for early, proactive, and equitable chest-health care in cerebral palsy.
Rachel Knight Lozano, Jos M Latour, Nicola Scivier, Caroline Weighton, Kayleigh Bell, Hugh Malyon, Sarah McGoldrick Kolawole, Julia Melluish, Mark Williams, Christopher Morris, Harriet Shannon
Disease Category: Child health
Disease Name: Cerebral palsy, Respiratory diseases
Age Range: 0 - 18
Sex: Either
Nature of Intervention: Any
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Patient perspectives
- Advisory Groups
- Interview
- Semi structured discussion