Engaging Secondary Caregivers in Research for Children With Medical Complexity.

OBJECTIVE: Primary caregivers (PCG; eg, often a parent or guardian) are central to caring for children with medical complexity (CMC). Secondary caregivers (eg, another parent, spouse/partner of the PCG, extended family members, friends, in-home or school-based professionals) also play an important role in caregiving and, presumably, CMC and family health, but are rarely represented in research. To address a critical need for strategies to engage these caregivers in research, this study described experiences recruiting and retaining secondary caregivers into a clinical trial. METHODS: This was a descriptive study from the Meds@HOME randomized trial-a digital intervention to support medication administration at home for CMC. Eligible children were under 17 years, had at least 2 Complex Chronic Conditions, and were prescribed at least 1 high-risk medication. PCG identified and ordered secondary caregivers (SCG) by degree of medication delivery involvement. SCG were recruited for a CMC until up to 2 were enrolled. Data were analyzed with descriptive statistics. RESULTS: Of 214 SCG approached, 182 (86%) enrolled, 99 control and 83 intervention. PCG preferred nearly all SCG (209; 95%) to receive the study information sheet directly from them vs study staff. Mean SCG age was 44 years and 53% were men. The mean (SD) time SCG spent caregiving was 8.3 (7.3) hours/d. SCG relationships varied, eg, grandparents (16%), in-home professionals (9%). Of those enrolled, 92% were retained through the study. CONCLUSION: These results demonstrate promising feasibility for including SCG in CMC research. Researchers and quality improvement leaders focused on caregiving could build upon these approaches to integrate SCG and better represent a comprehensive caregiving context in their programs.