Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study

This qualitative study utilized in-depth semi-structured interviews and focus groups. HCPs (n = 15) and parents (n = 15) of CMC who had all used a comprehensive care plan were recruited from a tertiary pediatric academic health sciences center. Themes were identified through grounded theory analysis of interview and focus group data.A multi-dimensional model of perceived care plan usefulness emerged. The model highlights three integral aspects of the care plan: care plan characteristics, activating factors and perceived outcomes of using a care plan. Care plans were perceived as a useful tool that centralized and focused the care of the child. Care plans were reported to flatten the hierarchical relationship between HCPs and parents, resulting in enhanced reciprocal information exchange and strengthened relationships. Participants expressed that a standardized template that is family-centered and includes content relevant to both the medical and social needs of the child is beneficial when integrated into overall care planning and delivery for CMC.Care plans are perceived to be a useful tool to both health care providers and parents of CMC. These findings inform the utility and development of a comprehensive care plan template as well as a model of how and when to best utilize care plans within family-centered models of care.Children with medical complexity (CMC) are vulnerable to care that is inadequate and poorly coordinated [1-6], leading to family stress, unsafe care [3,7-9], poor health outcomes, and increased rates of hospitalization [10,11]. Recent literature strongly advocates that these children be cared for in a medical home [12] and receive a written medical care plan to facilitate their transition through the health care system [12,13]. Work done by Berry and colleagues looking at the experiences of parents and health care providers caring for children with tracheotomy demonstrated the need for provider led care plans and the utilization of web-based tec