“Hope is so fragile”: parent perspectives on the care of children with single-ventricle heart disease

INTRODUCTION: Children born with single-ventricle heart disease face a myriad of medical comorbidities, psychological risks, and quality of life challenges as they age. Parent perspectives on their care from diagnosis through development are critical to understand best ways and times to intervene to promote child and family adjustment to illness. MATERIALS AND METHOD: Parents of children with status post-Fontan procedure were recruited to complete an electronic qualitative survey exploring parent perspectives of care. Grounded theory was utilised to analyse the data and identify themes and subthemes. RESULTS: Twenty-four parents completed the survey, describing their experience from diagnosis through the early years of treatment and into childhood and adolescence. Seven core themes were identified: survival and hope, parent stress and support, early stress and development, quality of life, increased independence, connection to the team, and communication. Initially, parents shared early worry regarding survival as they learned more about the condition and underwent surgeries. Later, parents supported their child's development and balanced ongoing hypervigilance with promotion of normalcy in their child's life. Quality of life and behavioural health concerns emerged amongst other medical comorbidities, and parents emphasised the need for both child and parent support in navigating family life with this illness. DISCUSSION: Parent perspectives highlighted the importance of family-centred, multidisciplinary care models that integrate medical subspeciality and psychosocial services for holistic care of children born with single-ventricle heart disease. Implications for care across development and interventions for children and parents are discussed.