Family processes and outcomes in congenital heart disease

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Phillips, Lucy
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University College Cork
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Systematic Review Objective: Children with congenital heart disease (CHD) are at an increased risk of poorer neurodevelopmental and psychosocial outcomes. Family factors have been increasingly implicated in predicting outcomes, sometimes over illness severity. However, evidence remains equivocal, there is variability in methodological quality and much of the research relies on cross-sectional studies. Methods: The current systematic review focused only on longitudinal studies, reaching threshold quality criteria, and which assessed modifiable and dynamic family factors (e.g. parent mental health, attachment, family functioning) and later child neurodevelopmental, psychosocial and quality of life outcomes. Searches were conducted across CINAHL, Medline-Pubmed, PsychInfo and SCOPUS Web of Science. Results: 14 studies met inclusion criteria and included samples from infancy to adolescence with various degrees of CHD severity. Overall, findings suggested that family factors contribute to later child psychosocial outcomes whereas disease factors appeared to have greater associations with neurodevelopmental outcomes. Disease factors appeared implicated in psychosocial outcomes among younger children, however this influence appeared to decline as children got older. Conclusion: This systematic review highlights the differential impact of family and disease factors on outcomes for children with CHD. Findings strengthen the rationale for family focused interventions for this population. Major Research Project Objectives: Family factors are gaining increasing interest in understanding outcomes for children with congenital heart disease (CHD). In this study, we took a novel qualitative approach to elucidate narratives “with hindsight”, across all of development, in parents of young adults with significant CHD. We further sought to explore whether participation in an early family focused intervention was associated with experiences and constructs. Design: A pluralistic qualitative design was adopted. Focus groups and individual interviews were conducted with 15 parents whose child was now aged between 19-26 years and had a diagnosis of CHD. Thematic Narrative Analysis identified stories of parenting across time and common themes therein. Half of the sample had participated in a family focused intervention in infancy / early childhood and half had not. Results: Two dominant narratives were identified; (1) ‘Surviving and Thriving’ and (2) ‘Living with Ghosts’. These narratives contained six common themes which varied in valence and salience: stories of trauma, living with worry, struggles with normalisation, ripple effects, stories of coping and healing hands. Conclusions: Whilst themes across our total sample were shared, the exposition of these varied and largely in an internally consistent way. Thus, those who coalesced around a ‘Surviving and Thriving’ narrative told stories of resolved trauma, optimism, normalization and problem solving across the many hurdles of development. The ‘Living with Ghosts’ stories suggested these themes remained more active, distressing and an ongoing struggle. We considered various pathways to these differential outcomes. Participation, or not, in an early family focused interventions appeared to have the greatest salience.
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Congenital heart disease , Family processes , Child outcomes , Parenting , Intervention , Thematic Narrative Analysis
Phillips, L. 2023. Family processes and outcomes in congenital heart disease. DClinPsych Thesis, University College Cork.