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Palliative medicine · Mar 2021
Reflective insights from developing a palliative care children and young people's advisory group.
- Anna Roach, Debbie Braybrook, and Steve Marshall.
- Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK.
- Palliat Med. 2021 Mar 1; 35 (3): 621-624.
BackgroundThe importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research.AimTo plan and deliver a Young People's Advisory Group in palliative care and health research at a secondary school.FindingsAttending an after-school 'Health and Social Research Methods Club' for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group.ConclusionThis project has equipped researchers with skills and provided a structured template for future Young People's Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.
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