Clinical Research Coordinator II Medical College of Wisconsin Medical College of Wisconsin Milwaukee, Wisconsin, United States
Background: Complex Care Programs (CCP) help families address challenges in caring for children with medical complexity (CMC). While studies have examined the benefits of CCPs on CMC health service utilization, how CCPs impact families directly is unknown.
Objective: Study CMC family perspectives on CCP impact over two years.
Design/Methods: Annual surveys were sent to families of CMC in a tertiary center CCP two consecutive years (2018: 639 sent, 24.9% response rate; 2019: 635 sent, 21.9% response rate). In addition to questions about program satisfaction (2018: 95% and 2019: 97% somewhat or very satisfied), two open-ended questions explored families’ perception of CCP value: “What has improved for your family because of being in the Complex Care Program?” and “What else would you like to see improve for your family because of being in the Complex Care Program?”
In 2018 5 members of an interdisciplinary team individually reviewed verbatim responses and identified themes. The team developed coding categories and definitions from these themes. Individuals coded responses, and discrepant coding was discussed to achieve consensus. In 2019 the team coded responses using the same thematic categories.
Results: For both questions the proportion by theme was relatively stable from year to year. For “What has improved for your family?” nearly half mentioned Impact on Parent and Family (peace of mind, feeling supported, decreased worry/stress, time saved, ability to be parents). Other prevalent themes were Tasks of Care Coordination (appointment scheduling, paperwork) and Addressing Medical Needs (big picture/long term approach, communication between specialists, decision making, access to providers). Less-common themes were Familiarity, Availability, Support of Families, Education and Information Sharing, and Negative/Neutral Feedback.
For “What else would you like to see improve?” the most prevalent theme was No Concerns/Positive Feedback. Other responses addressed Community Resources; Unmet Expectations of CCP, the Hospital System, and Care Team Relationships and Interactions; Care Plan Development; and Transitions. Conclusion(s): Families most commonly identified improvements related to CCP missions of care coordination and medical co-management, but also intangibles like peace of mind, support, and the ability to simply be parents.
These findings will help CCPs focus on activities most valued by families and may direct development of a tool to evaluate CCP impact on families of CMC.
Authors/Institutions: Sarah Johaningsmeir, Medical College of Wisconsin, Milwaukee, Wisconsin, United States; K. Jane Lee, Medical College of Wisconsin, Milwaukee, Wisconsin, United States; Jessica L. Schnell, Medical College of Wisconsin, Milwaukee, Wisconsin, United States; Sara K. Quates, Medical College of Wisconsin, Milwaukee, Wisconsin, United States; Astrida Kaugars, Marquette University, Milwaukee, Wisconsin, United States