Abstract
Background: Accessing healthcare for children with medical complexity (CMC) living outside of major cities is often time-consuming and challenging to navigate, impacting quality of life and wellbeing of multiple family members caring for CMC and influencing how the whole family functions.
Approach: This study was nested within the implementation evaluation of Rural Kids Guided Personalised Service (RuralKidsGPS), a rural paediatric care coordination service for CMC, in New South Wales, Australia. Adapted from the co-designed urban KidsGPS model, RuralKidsGPS was implemented and evaluated with guidance from stakeholders including family members of CMC, clinicians, First Nations health workers, policy officers, health managers, and researchers. After accessing RuralKidsGPS for 6-2 months, multiple family members of CMC were invited to participate in semi-structured interviews either individually or together (in-person or via video-conferencing) according to family capacity and preference. Siblings and CMC aged 7 years could participate in the interview with their parents. The interviews were recorded and transcribed verbatim. Thematic narrative analysis identified patterns of meaning in families stories, 2 including exploring multiple perspectives within families.
Results: Thirteen interviews were conducted with families, including 0 mothers, 5 fathers, 2 CMC, and 3 siblings. Participants described how uncoordinated care demanded unnecessary travel at both financial and interpersonal cost to the family unit;. Predominantly mothers regularly travelled 00-500 kilometres to access specialist healthcare away from home while fathers tended to remain, to maintain stable employment. Being far away from home limited support from fathers and extended family, leaving mothers isolated and carrying the weight of it caring. This separation also disjointed family [and COVID-9] disconnected us even more with relationship costs varying according to each family unique context. Fathers who were absent from healthcare encounters missed important information about their child health, including being taught from the professionals how to use their child medical technology (e.g. feeding tube). Mothers responsibility to teach everyone when returning home was reported to set the family caring environment on a knife edge because it relying on Mum. If she gets crook we dont know what to do. Siblings experienced a big change in [their] attachment to mothers and some felt thrown into a rolecaring for younger siblings. Families reported that local rural emergency departments (EDs) were;not great with kids and RuralKidsGPS created personalised shared care plans which facilitated communication between local healthcare providers, including EDs, and specialist teams from metropolitan hospitals - that was implemented and it worked. Enabling rural healthcare providers to deliver quality complex care closer to home helped to maintain continuity of family relationships, enabling fathers to participate in care during CMC hospitalization: my husband could help out also I could be closer to my other daughter
Implications: Care coordination improves access to and quality of complex paediatric care for CMC in rural areas, reduces family disruptions, supports family relationships, and increases capacity for shared support within families. Integrated care is necessary to ensure more connected and equitable care which ultimately positively impacts wellbeing for rural families caring for CMC.
References. Altman L, Breen C, Ging J, et al. "Dealing with the hospital has become too difficult for us to do alone" - developing an integrated care program for children with medical complexity. International Journal of Integrated Care 208; 8(3):-7. https://doi.org/0.5334/ijic.3953. 2. Riessman CK. Narrative methods for the human sciences. Los Angeles: Sage Publications; 2008.3. Vogl S, Zartler U, Schmidt E-M, et al. Developing an analytical framework for multiple perspective, qualitative longitudinal interviews (MPQLI). International journal of social research methodology 208; 2(2):77-90. https://doi.org/0.080/3645579.207.34549.