Development and Testing of the CARE_PATH for Kids
The Child and Adolescent Health Measurement Initiative (CAHMI) at Johns Hopkins University, with funding from the Lucile Packard Foundation for Children’s Health, started developing a model and tools for engaging families of children, who are in need of care planning and care-coordination, in 2016.
The model and tools were pilot tested with families and clinic teams at two practice sites. Family, clinical and research leaders were engaged throughout the development process. The resulting CARE_PATH for Kids (CPK) model and tools reflects best practice research and findings.
The testing of the CPK was conducted at three sites: Johns Hopkins Bayview (Bayview, general pediatrics clinic), Stanford Medical (Stanford; complex care pediatrics clinic), and Family Voices (FV; national advocacy organization for CYSHCN/families). Between May 2018 and June 2019, we enrolled parents of CYSHCN, whose child was getting care at a pilot clinic site, or who were members of the FV community. We also enrolled clinic care team members from pilot clinic sites; all care team members were invited to participate voluntarily.
The CPK tools were developed through a mixed methods, human-centered design approach including six input processes: 1) clinic care team online anonymous survey; 2) clinic care team focus groups led by site leads, and family focus groups led by research team staff; 3) clinic care team key informant interviews (KII) led by pilot site leads; 4) family cognitive interviews led by pilot site leads or research team staff during which families completed a feedback form; 5) input and feedback from national advisory group of diverse expertise engaged periodically (4 times) throughout project period; and 6) weekly internal research team meetings with pilot site leads and expert advisors.
Among the parent participants, 82% thought that the CPK would increase the value of their child’s care, 91% agreed that the CPK helped them learn about the kind of topics they could discuss with their child’s doctors, and 95% were likely to recommend the CPK to other parents.