Patient and Family Member Experiences in Critical Care Research and Quality Improvement Projects

Abstract

BackgroundPublic 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. ObjectivesTo explore former patients' and family members' views and experiences of involvement in critical care research and/or quality improvement. MethodsUsing 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. ResultsFour 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 DiscussionThis 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 INVOLVEMENT IN RESEARCH AND QI 5 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.

The experience of patient partners in research: a qualitative systematic review and thematic synthesis

“…The most commonly described motivations were related to a desire to help [ 19 , 24 , 26 – 33 , 35 , 37 – 39 , 41 , 48 , 49 , 55 – 58 ]. Specifically, patient-partners wanted to contribute to better research [ 26 , 32 , 33 , 48 , 49 ] and to improve healthcare [ 19 , 26 , 28 , 32 , 33 , 35 , 39 , 48 , 49 , 55 – 58 ], most often with a general desire to help other patients [ 19 , 26 – 29 , 31 , 33 , 35 , 37 – 39 , 41 , 49 , 55 – 58 ] or their communities [ 27 , 29 – 31 , 58 ]. The benefit of others was often described as the ultimate goal of patient-partners, while improving care and research were seen as the means to this end [ 26 , 35 , 38 , 39 , 49 , 55 , 58 ].…”

“…Multiple studies highlighted illness as the starting point to engagement in research for many patient-partners [ 19 , 26 , 33 – 35 , 37 – 41 , 47 – 49 , 55 – 59 ]. A central idea in these studies was that patient-partners wanted to work on something relating to their health experiences [ 19 , 26 , 34 , 35 , 38 , 39 , 47 – 49 , 56 , 58 ].…”

“…A central idea in these studies was that patient-partners wanted to work on something relating to their health experiences [ 19 , 26 , 34 , 35 , 38 , 39 , 47 – 49 , 56 , 58 ]. Within this theme, two distinct situations were common: some patients were grateful for the adequate care they had received and wanted to “give back” to the medical community [ 19 , 33 – 35 , 40 , 41 , 56 , 59 ]; others were frustrated by the negative experiences they had had and wished to improve the system for future patients [ 19 , 35 , 39 , 41 , 49 , 55 – 58 ]. “I was so impressed with [cardiac] rehab that I wanted to give something back.” (PP) [ 56 ] “The reason I got into the volunteering is to make the experience better than it was for me in those early days so that...the new families that are coming up won’t have such a broken experience.” (PP) [ 55 ] …”

“…Another motivation was the “desire to turn something negative into something positive” [ 41 ]. Through engagement in an activity which turned their illness into an asset, patient-partners hoped to “gain personal meaning from the experience of illness” [ 37 ]…”

“…Engagement in research was characterized as an interesting and stimulating activity [ 19 , 25 , 34 , 35 , 37 , 42 , 43 , 52 , 55 , 57 ]. Two factors were described as contributing to these qualities: the challenges encountered [ 23 , 34 , 35 , 51 , 52 ] and the opportunity to learn [ 19 , 21 – 27 , 29 , 31 – 35 , 37 – 39 , 41 – 44 , 46 – 53 , 55 , 57 – 59 ].…”