Wednesday, July 10, 2024
Bethlyn Vergo Houlihan , Center for Innovation in Social Work and Health (CISWH) project director, and Meg Comeau, CISWH senior project director, appeared on the latest OPENPediatrics Complex Care Journal Club Podcast where they shared recent findings from a qualitative analysis of focus groups with families of children with medical complexity. The purpose of the 27 focus groups across 10 states was to gain a better understanding of families’ quality of life and well-being, and how care providers could better meet their children’s and families’ needs.
Through powerful focus group reflections, families expressed the importance of counteracting societal bias about children and families with medical complexity by viewing each child as a whole person rather than just a medical diagnosis. When providers respond to a child with medical complexity as a whole human, capable of leading a life full of meaning and joy, the experience of care is transformed for everyone in the family and the care provider team. CISWH researchers also found that building trusted relationships and incorporating family expertise into decision-making are the most important, yet often missing, elements of care for families. Incorporating family expertise into decision-making can lead to strong improvements in child quality of life and family well-being.
Excerpt from “Upholding Human Dignity for Children with Medical Complexity and their Families” by the OPENPediatrics Complex Care Journal Club Podcast:
“I think it’s all part of that same sense of the family saying, ‘Look, our child is not a burden, our child is a joy’. And it’s the system, or a lack of system really all around, that isn’t able to provide the support. It’s this much larger daily experience of [families] feeling they’re constantly fighting to say, ‘I just want what we know we need so that my child can live, can just be a child and enjoy childhood experiences’. I think it makes a huge difference for everybody when you’re able to bring your humanity into an encounter and into a relationship, and that’s not always easy to figure out how to do. But I think that that is exactly what families are saying that needs to be elevated, emphasized, and valued as one of the most important things that they need in order to feel like it’s improving their daily lives for them and their children.”