Researchers' experiences working with community advisory boards: How community member feedback impacted the research.

INTRODUCTION: To assess researchers' experiences working with community advisory boards (CABs) and perceptions of how community member stakeholder feedback impacted the research. METHODS: Individual interviews were conducted with researchers (n= 34) who had presented their research to a Mayo Clinic CAB (at MN, AZ, or FL) from 2014 to 2017, with an average interview duration of 10-15 min. Researchers were asked "In what ways did the feedback you received from the CAB influence your research?" A validated, structured, 7-item interview was used to assess domains of the potential influence that CABs had on the research: (1) pre-research (e.g., generated ideas), (2) infrastructure (e.g., budget preparation), (3) research design, (4) implementation (e.g., research recruitment), (5) analysis, (6) dissemination, and (7) post-research. A total mean score was calculated with a possible range of 0-7. In addition, open-ended examples and feedback from researchers in response to each domain were summarized for themes using content analysis. RESULTS: Researchers reported that the CAB influenced research in the following domains: pre-research (24%), infrastructure (24%), study design (41%), implementation (41%), analysis (6%), dissemination (24%), and post-research activities (18%). The mean total score was = 1.8 (SD = 1.7, range: 0-6). Open-ended responses revealed major themes of CAB helpfulness in generating/refining ideas, identifying community partners, culturally tailored and targeted recruitment strategies, intervention design and delivery, and dissemination. CONCLUSION: Findings from this preliminary evaluation indicate that despite positive experiences noted in open-ended feedback, the perceived quantitative impact of CAB feedback on the research was moderate. Bidirectional communication between researchers and community member stakeholders has the potential to make clinical and translational research more relevant and appropriate.

Improving Quality of Life in Patients at Risk for Post-Intensive Care Syndrome.

OBJECTIVE: To improve quality of life (QOL) in patients at risk for post-intensive care syndrome (PICS). PATIENTS AND METHODS: We conducted a mixed-method, prospective, observational, pre-post interventional study in an adult medical and mixed medical/surgical/transplant intensive care unit (ICU) at a tertiary academic hospital. Preintervention included patients admitted from October 1 through October 31, 2016, and postintervention included patients admitted from January 15 through February 14, 2017. First, a multidisciplinary team of stakeholders identified barriers associated with decreased QOL in patients at risk for PICS. Next, interventions were designed and implemented. The effect of interventions was assessed using a mixed-method analysis. The qualitative analysis used a modified grounded theory approach. The quantitative analysis included assessment of preexisting symptoms and risk factors associated with PICS. The 36-Item Short-Form Health Status Survey (SF-36), which surveys physical and mental composite scores, was used to assess QOL. RESULTS: Barriers identified were lack of awareness and understanding of PICS. Interventions included educational videos, paper and online education and treatment materials, and online and in-person support groups for education and treatment. After interventions, the qualitative analysis found that patients who participated in the interventions after hospital discharge showed improved QOL, whereas education during hospitalization alone was not effective. The quantitative analysis did not find improvement in QOL, as defined by SF-36 physical or mental composite scores. CONCLUSION: Interventions targeted to patients after hospitalization may offer subjective improvement in QOL for those at risk for PICS.