Abstract
Abstract
Introduction Involving people with lived experience is an important component in health research. Conducting public and patient involvement (PPI) within paediatric palliative care (PPC) research requires sensitivity and has specific ethical and practical considerations. As a research group, it was important to reflect on how we have worked with parents of children with life-liming conditions and bereaved parents, referred to herein as PPI-partners. We needed to understand what has worked well, what could be improved and what lessons can be learnt.
Aims To increase understanding about the research group’s PPI activities.
Methods A qualitative evaluation of PPI-partner and researchers’ experiences of PPI activities. An anonymous survey was distributed to all those involved in PPI work with the research group, including members of our Family Advisory Board (FAB). Members of the FAB were also invited to be interviewed and a focus group was held with researchers. The data were analysed thematically.
Results Twelve researchers participated in a focus group, four PPI-partners were interviewed and 8 completed the survey. Gaps in communication of processes and the purpose of the PPI group were found. Balanced and open relationships between researchers and PPI-partners created a safe space and enabled the discussion of sensitive topics. PPI partners valued when their contributions, and the impact of their PPI work, was recognised and acknowledged.
Conclusion For successful PPI in PPC research, roles, processes, and expectations must be explicitly agreed. Investment of time and resources in establishing relationships creates a sense of safety and enables authenticity and vulnerability from all involved. PPI has positive personal benefits for both researchers and PPI-partners, in addition to improving the research.
Impact The evaluation of experiences of those involved in PPI, led to the development of a ‘route map’ for establishing an impactful PPI group for paediatric palliative care research.
Introduction Involving people with lived experience is an important component in health research. Conducting public and patient involvement (PPI) within paediatric palliative care (PPC) research requires sensitivity and has specific ethical and practical considerations. As a research group, it was important to reflect on how we have worked with parents of children with life-liming conditions and bereaved parents, referred to herein as PPI-partners. We needed to understand what has worked well, what could be improved and what lessons can be learnt.
Aims To increase understanding about the research group’s PPI activities.
Methods A qualitative evaluation of PPI-partner and researchers’ experiences of PPI activities. An anonymous survey was distributed to all those involved in PPI work with the research group, including members of our Family Advisory Board (FAB). Members of the FAB were also invited to be interviewed and a focus group was held with researchers. The data were analysed thematically.
Results Twelve researchers participated in a focus group, four PPI-partners were interviewed and 8 completed the survey. Gaps in communication of processes and the purpose of the PPI group were found. Balanced and open relationships between researchers and PPI-partners created a safe space and enabled the discussion of sensitive topics. PPI partners valued when their contributions, and the impact of their PPI work, was recognised and acknowledged.
Conclusion For successful PPI in PPC research, roles, processes, and expectations must be explicitly agreed. Investment of time and resources in establishing relationships creates a sense of safety and enables authenticity and vulnerability from all involved. PPI has positive personal benefits for both researchers and PPI-partners, in addition to improving the research.
Impact The evaluation of experiences of those involved in PPI, led to the development of a ‘route map’ for establishing an impactful PPI group for paediatric palliative care research.
| Original language | English |
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| Publication status | Published - Jan 2024 |
| Event | The Marie Curie Research Conference 2024 - Duration: 5 Feb 2024 → 9 Feb 2024 |
Conference
| Conference | The Marie Curie Research Conference 2024 |
|---|---|
| Period | 5/02/24 → 9/02/24 |