Reflective insights from developing a palliative care children and young people's advisory group

Area of Science:

• Pediatric Palliative Care
• Health Research Methodology
• Patient and Public Involvement

Background:

• Patient and public involvement is crucial in palliative care and health research.
• Current practices often exclude the perspectives of children and young people.
• There is a lack of structured guidance for involving youth in palliative care research.

Purpose of the Study:

• To develop and implement a Young People's Advisory Group (YPAG) for palliative care and health research.
• To engage children and young people in the research process within a secondary school setting.

Main Methods:

• An after-school 'Health and Social Research Methods Club' was conducted for 11 weeks.
• Children received training in data collection, data analysis, and research ethics.
• Participants provided feedback on palliative care research projects.

Main Results:

• The club successfully engaged children and researchers, fostering mutual learning.
• Children developed practical research skills and offered valuable insights.
• Feedback from the group was integrated into ongoing palliative care research.

Conclusions:

• The project successfully equipped researchers with skills and a template for future YPAGs.
• This initiative ensures the inclusion and valuation of children's and young people's perspectives in research.
• It provides a model for enhancing youth engagement in palliative care research.