Overcoming Patient-Centered Outcomes Research Barriers During and After Critical Illness Hospitalization

BACKGROUND: Recruiting patients/family for research related to intensive care unit (ICU) care can be challenging. OBJECTIVES: To engage diverse stakeholders (patients with recent ICU discharge, their families/caregivers, ICU clinicians, and health services researchers) to identify barriers to research engagement among recently discharged patients and their family members/caregivers and to highlight strategies to address the barriers. METHODS: Four sessions of group concept mapping, a participatory research and engagement approach, were used with 16 former patients and their family members/caregivers and 23 professionals (clinicians and researchers) to elicit barriers to ICU research participation. Strategies to address the barriers were outlined and categorized according to themes identified in the literature, with input from a patient and family advisory board. RESULTS: Ninety-eight unique barriers were identified and organized into 7 clusters: negative experiences surrounding ICU stay, difficult research logistics, patient and family characteristics, ICU setting limitations, post-critical illness issues, research fears, and (mis)perceptions about research. Strategies to overcome those barriers were identified and outlined in an open access, web-based toolkit to help ICU clinicians and researchers engage people in research. CONCLUSIONS: Ensuring that patients and families have sufficient information about research participation, promoting a research-supportive culture, addressing uncertainty about research participation, and providing clinical staff with access to research training can help engage ICU patients and family members in critical care research.