Parents' experiences of a decentralised neurodevelopmental follow-up care pathway for children with congenital heart disease: a qualitative evaluation

Abstract

Introduction: Optimal follow-up for children with congenital heart disease (CHD) and their families should include accessible models of neurodevelopmental care. The Congenital Heart Disease Longterm Improvements in Functional hEalth (CHD LIFE) decentralised care pathway was developed and implemented for children across the state who undergo open-heart surgery <12 months of age at the Queensland Paediatric Cardiac Service, Australia. This pathway seeks to empower families and facilitate access to the right surveillance, evaluation, and treatment in the right location at the right time. This study aimed to qualitatively explore families' experiences, perceptions and outcomes of the CHD LIFE pathway. Methods: 35 mothers and 2 fathers with children registered on the pathway (n=36; aged 19 months to 10 years; 51% male) participated in qualitative, semi- structured phone interviews. Transcripts were analysed inductively by two researchers adopting an iterative thematic analysis approach. Analysis also explored barriers, enablers and key implementation outcomes of the pathway. Results: Interviews highlighted strong themes of parental satisfaction with the CHD LIFE pathway and positive outcomes for families. Parents reported increased awareness and knowledge of appropriate development for their children, which often resulted in proactively seeking professional follow-up for concerns. Eleven parents specifically reported improvements in their child's development after accessing allied health or disability services. The availability of ongoing access to health professionals for reassurance and expert knowledge to support concerns were seen as key benefits. However, many parents reported challenges with timely access to appropriate local services. The lack of a centralised touchpoint to coordinate ongoing follow-up placed an onus on families to drive and advocate for care. System navigation was a key challenge, which limited some families with poor health literacy or socioeconomic disadvantage. Most parents recalled receiving pathway education before hospital discharge and were aware of the need for recommended follow- up, but an unclear understanding of the pathway's structure, including how it differed to usual childhood developmental follow-up was also noted. Perceived success of the pathway varied across regions and services. Suggested opportunities for improvement included: care coordination; brief annual check-ins via phone or email; parental mental health support; and take-home resources inclusive of practical advice and additional information about the pathway's structure. Discussion: TheCHDLIFE pathway provides an exemplar of a successful decentralised neurodevelopmental care pathway for children with CHD. Embedding follow-up care into local community services was acceptable for families, yet constraints related to service capacity and perceived variability in local provider expertise were identified. Addressing identified opportunities for improvement is a priority for supporting the sustainment of CHD LIFE. This may include increased care coordination, pathway education, and an understanding of access barriers to scaffold equitable follow-up care for all families regardless of location or circumstances.