Disability and rehabilitation · 2026
Experiences of chest health and associated illness in children and young people with cerebral palsy: a qualitative study.
СтатьяНазвание и аннотация: Перевод в очереди
Обработка статьи · этапы, ошибки и управление
Загрузка состояния…
Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
Knight Lozano Rachel, Latour Jos M, Scivier Nicola, Weighton Caroline, Bell Kayleigh, Malyon Hugh, McGoldrick Kolawole Sarah, Melluish Julia, Williams Mark, Morris Christopher, Shannon Harriet
Аннотация
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.
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.