If they knew what I thought was important that would help a lot more”: Methods for involving children and young people with life-limiting and life-threatening conditions in development of a paediatric palliative care outcome measure

Abstract

Background: Meaningful involvement of children and young people (CYP) in health research aligns with the UN Convention on the Rights of the Child. Studies collecting primary data from CYP with life-limiting and life-threatening conditions, that could inform content validity of outcome measures, are challenging and rare.
Aim(s): To advance methods for meaningful involvement of CYP in the development of paediatric palliative care outcome measures.
Method(s): Solutions to challenges in data collection were iteratively tested and refined. CYP involvement was achieved through: 1) Semi-structured qualitative interviews. 26 CYP aged 5-17 with life-limiting and life-threatening conditions across 9 clinical sites, 2) Repeated engagement with Young Person’s Advisory Group.
Result(s): CLINICIANS: To achieve CYP recruitment, strong links developed through initial site visits for partnership building, one team member allocated clinical site contact, offered conference scholarships, summary sheet addressed concerns about introducing study to families, and quarterly newsletter. FAMILIES: To encourage consent of parent/caregivers to CYP participation, described interview topics and wording during pre-interview discussions, meeting families pre-interview where possible. CYP: Developmentally appropriate play/chat preceded CYP assent and utilised to re-engage and alleviate tension; interviews began with talk about likes and dislikes; examples used to facilitate discussion; interviews paused where required to account for medical needs; caregiver input for support and interpretation where necessary. YOUNG PERSON’S ADVISORY GROUP: Partnership building with leader of a young person’s advisory group, remote meetings to sustain engagement during the COVID-19 pandemic, developmentally appropriate content, feedback to CYP.
Conclusion(s): CYP are rarely engaged to inform content validity in outcome measure development. By responding to the needs of each stakeholder group involved in enabling CYP participation, we meaningfully engaged a traditionally ignored population. The methods developed here offer lessons for future research for CYP with complex health needs. Acknowledgement: Submitted on behalf of C-POS consortium. Disclosures: The authors declared no competing interests.