Caregiver and Care Team Perceptions of Online Collaborative Care Planning for CMC

Care plans summarize a child with medical complexity's (CMC) medical history and ongoing care needs. Often, the health care team controls the care plan content, limiting caregivers' ability to edit the document in real time and potentially compromising accuracy and utility. With this study, we aimed to provide caregivers of CMC with online access and shared editing control of their child's care plan and to explore the experiences of caregivers and care team members (CTMs) after using an online collaborative care plan (OCCP).

Caregivers of CMC were recruited from a tertiary complex care program to use an online, patient-facing platform for 6 months, which included the ability to edit and share their child's care plan. Caregivers and CTMs participated in semi-structured interviews to explore their experiences in using the OCCP. Consistent with grounded theory methodology, a constant comparative analysis was used, which allowed for theoretical sampling and theory generation.

A total of 15 caregivers and 20 CTMs completed interviews. Interviews revealed 3 major themes and 9 subthemes, including (1) the navigation of uncharted roles (trust, responsibility), (2) the requirements for success (electronic medical record integration, online access, collaborative care plan review), and (3) cohesive care (accessibility and convenience, being on the same page, autonomy). Themes informed the creation of a theoretical model for the implementation and utility of OCCPs.

Online, collaborative care plans, when implemented safely and thoughtfully, promote shared understanding, improve caregiver autonomy, and increase the accessibility of health information. Together, these benefits facilitate cohesive care and authentic partnership between caregivers and CTMs in the care of CMC.