Engaging Secondary Caregivers in Research for Children With Medical Complexity

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.

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.

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.

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.