Experiences of chest health and associated illness in children and young people with cerebral palsy: a qualitative study.

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.