Psychological responses following the diagnosis of congenital heart disease: A systematic review of the literature and recommendations for supportive care during the perinatal period

  • Dr Nadine Kasparian, School of Women’s and Children’s Health, Faculty of Medicine, University of New South Wales, Kensington, NSW, Australia, Australia
  • Prof Bryanne Barnett, Karitane Early Parenting Services, Carramar, NSW, Australia, Australia
  • A/Prof Gary Sholler, Adolph Basser Cardiac Institute, The Children’s Hospital at Westmead, Westmead, NSW, Australia, Australia
  • A/Prof David Winlaw, Adolph Basser Cardiac Institute, The Children’s Hospital at Westmead, Westmead, NSW, Australia, Australia
  • Dr Edwin Kirk, Department of Medical Genetics, Sydney Children’s Hospital, Randwick, NSW, Australia, Australia

    • Introduction: Advances in paediatric cardiac surgery have resulted in increasing numbers of children surviving congenital heart disease (CHD), yet despite this medical success, CHD is widely recognised as a major source of stress and trauma within families.

    Objectives: To conduct a systematic review of the literature reporting on psychological responses, and/or parent-infant interaction, following CHD diagnosis. To then apply this information to the development of evidence-based recommendations for the supportive care of families affected by CHD.

    Methods: Relevant studies were identified via the MEDLINE, PsycINFO, EMBASE and CINAHL databases (1988-2008), supplemented by citation lists in retrieved articles and expert consultation. A total of 277 articles were critically appraised to assess eligibility, with 41 studies meeting all inclusion criteria.

    Results: Studies have documented a range of psychosocial challenges experienced by parents of infants with CHD, including: fears about medical prognosis, frequent hospitalisations and periods of family separation, financial and care-giving burdens, marital breakdown, and grief. A substantial proportion of parents report unmet support needs; however, there are no controlled trials of psychological or supportive care interventions in this setting.

    Conclusions: To address this deficiency, we have embarked upon a prospective study examining the predictors of resilience or vulnerability in parents of infants with a major heart abnormality, with particular focus on responses following prenatal versus postnatal diagnosis. The perinatal period is a critical time to identify, and offer appropriate intervention to, parents at risk of adverse psychological outcomes, thus supporting the development of a secure attachment pattern between infant and parent.