At the Heart of Care: An Exploration of Family and Professional Perspectives in Paediatric Cardiology

<p dir="ltr">Paediatric cardiology presents a complex and emotionally charged landscape for families and professionals alike. For those affected by congenital heart diseases such as hypoplastic left heart syndrome (HLHS), the journey often begins before birth, involving difficult decisions and a lifelong trajectory of care. Families frequently face ongoing psychological and practical challenges, while healthcare professionals must navigate how best to support them. This thesis explores experiences from both perspectives: families of children with HLHS and healthcare professionals working in paediatric cardiology. It aims to understand the psychosocial impacts involved and assess the feasibility of integrating psychologically informed approaches (PIA) to support more holistic care.</p><p dir="ltr">Section one systematically reviews the literature investigating the family experiences of supporting a child with HLHS. Twelve studies were selected and thematically synthesised, leading to the generation of four overarching themes exploring key psychosocial elements of navigating this condition: toll on the parents, worries about the child, observed differences to parenting, and experiences of support. Bronfenbrenner’s ecological systems theory could provide context to explaining family distress and emphasise the difficulties experienced and importance of effective support.</p><p dir="ltr">Section two aims to investigate healthcare professionals’ perspective on the feasibility of integrating psychologically informed approaches (PIA) into paediatric cardiology, given the several psychosocial challenges involved with caring for and treating this clinical population. Four themes were generated using a template analysis: perceptions of PIA, systemic and organisational considerations, navigating interprofessional dynamics and perceived responsibilities, and skills and behaviour development. Successful integration of this framework may come from context-sensitive strategies that support individuals and organisations to address current barriers to improve holistic care of children and young people with a cardiac condition.</p>