Care Coordination Experiences of Whole Families Caring for Children With Medical Complexity in Rural Areas

Abstract

Family caring roles create significant impacts on individual family members' physical, mental and social wellbeing, and can disrupt family financial stability, relationships and functioning. The perspectives of family members other than mothers are often omitted from research, reducing understanding of the broader impacts of supportive interventions such as care coordination. This study aimed to understand how multiple family members experience the impacts of caring for children with medical complexity (CMC) in a rural setting in Australia, and how paediatric care coordination influences their experiences. This qualitative study involved thematic narrative analysis and multimember comparison to identify themes within and across families, which were then mapped against the socioecological model. Members of 13 families of CMC receiving a nurse-delivered care coordination intervention, the Rural Kids Guided Personalised Service, participated in semi-structured interviews, including mothers (n = 12), fathers (n = 7), siblings (n = 3), CMC (n = 2) and an aunt (n = 1). Five themes were generated, including: Caring for CMC in varied family contexts, Coordinating care to support family strengths, Accessing appropriate care when living in a rural area, Impact on the whole family (including two subthemes: Family relationships and Enabling support within and for families) and Quality care closer to home. These findings are relevant for future implementation of integrated care models, and can inform the development of expanded models of care that address broader family health and social needs. Future service evaluations would benefit from inclusion of multiple family members, rather than only mothers, to allow a more comprehensive understanding of how best to support whole families. Parents with lived experience of caring for CMC in rural areas sat on the steering committee guiding the implementation and evaluation of RuralKidsGPS, alongside clinicians, Aboriginal health workers and advisors, health managers, researchers and policy officers.