CARE_PATH for Kids (CPK)

Vision of the CARE_PATH for Kids

 

Data from the 2017-2018 National Survey of Children's Health shows that children with special health care needs (CSHCN) represent almost 19% of all US children age 0-17 (13.76 million). The majority of CSHCN have more complex needs and have multiple health conditions requiring multiple types of health care and related services. Yet, the majority of CSHCN do not receive recommended care, including family centeredness and care coordination.

The CARE_PATH for Kids (CPK) is a model and suite of tools designed to engage families and care teams in a comprehensive assessment of a family’s strengths, needs, visions, priorities and goals, to inform the development of a shared plan of care. The CPK uses a three-step whole child approach for families to engage, plan, and improve care planning and outcomes in partnership with their child’s care team(s).

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.