“We do it because it matters” - From Insight to Impact when involving Neuro-Oncology Caregivers in the Design of a Supportive Intervention

Abstract Background Persons with lived experiences are a valuable resource to ensure that support interventions are grounded in real-world needs and thereby become relevant, acceptable, and impactful. The aim of this study is two folded: 1) to design a supportive group-based intervention for caregivers of patients diagnosed with glioblastoma with user involvement, 2) to evaluate the user involvement process. Methods An intervention development study using Patient and Public Involvement (PPI) engaged caregivers in the design of a supportive intervention for caregivers. The Workbook to Guide the Development of a Patient Engagement In Research Plan served as a guide for the PPI process and collaboration between a caregiver panel and the researcher team. The process was evaluated using a multi-methods approach including quantitative- and qualitative data. Results A national panel of current- and bereaved caregivers (n = 10) was recruited from the Danish Brain Tumour Association. A multicomponent online intervention was developed during a two-year PPI-process shaped by the panel members lived experiences. Participants evaluated engagement as highly meaningful, with an overall mean score of 94.9% (range 85.2 – 100%). The qualitative findings supported the positive results, describing the process as well-structured, meaningful, and valuable for the participating caregivers. Conclusion The study demonstrated successful engagement of neuro-oncology caregivers in a long-term, structured PPI process. Despite emotionally demanding life circumstances, including disease progression and bereavement, panel members consistently maintained their engagement in the panel. PPI was a resource-intensive process, however, the added value included enhancing relevance, strengthening population targeted intervention design, and ensuring that lived experiences meaningfully shaped the supportive intervention.