Public and patient involvement in healthcare research is increasing, but the effect of involvement on individuals, service delivery, and health outcomes—particularly in specialist population groups like critical care—remains unclear, as does the best way to involve people who have experienced critical illness.
The aim of the study was to explore former patients’ and family members’ views and experiences of involvement in critical care research and/or quality improvement.
Using a qualitative methodology, semistructured telephone interviews were conducted with seven former intensive care unit patients and three close family members across England. Data were analyzed using a standard process of inductive thematic analysis.
Four key themes were identified: making it happen, overcoming hurdles, it helps, and respect and value. Findings center on the need for flexibility, inclusivity, and transparency. They further highlight the particular challenges faced by critical illness survivors and their family members in relation to research involvement, the importance of individualized support and training, and the vital role that project leads have in making people feel valued and equal partners in the process.
This is the first study to explore patients’ experiences of involvement in critical care research. Despite the small, homogenous sample, the study provides valuable and important data to guide future practice. It highlights the need to enable and support people to make informed choices at a time when they are ready to do so. It further highlights the importance of gatekeepers to avoid vulnerable people contributing before they are ready—a practice that could negatively affect their health status.