Listening to families: qualitative analysis of family perspectives on the impact of participating in a complex care program

Background Complex Care Programs (CCPs) provide care for children with medical complexity (CMC). The broad impact of CCP participation on families is unknown. This study sought to elucidate what families value about participation in a CCP and what additional benefit families hope CCPs will provide. Methods Surveys from families of CMC in a CCP were collected over the course of two years. Responses were summarized for two fixed response satisfaction questions. Qualitative responses to two open-ended questions exploring CCP value were analyzed using content analysis. Results Most families (95% and 97%) were somewhat or very satisfied with the CCP. All families would recommend the CCP to others. For the question “What has improved for your family?,” nearly half mentioned Impact on Family. Other prevalent themes were Tasks of Care Coordination and Addressing Medical Needs. For the question “What else would you like to see improve?” most families reported No Concerns. Other responses addressed Community Resources; Unmet Expectations; Care Plan Development; and Transitions. Discussion Families identified improvements related to CCP missions (i.e. care coordination and medical co-management) but also intangible impacts. Findings will help CCPs prioritize activities valued by families and direct development of a tool to evaluate family impact.