Patient and family member experiences of involvement in critical care research and quality improvement projects

Background: Public and patient involvement in healthcare research is increasing, but the impact of involvement on the individuals, on service delivery and on 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. Objectives: To explore former patients' and family members' views and experiences of involvement in critical care research and/or quality improvement. Methods: Using a qualitative methodology, semi-structured 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. Results: Four key themes were identified: making it happen; overcoming hurdles; it helps; respect and value. Findings centre 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 individualised support and training and the vital role that project leads have in making people feel valued and equal partners in the process Discussion: 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, which could negatively affect their heath status.