Research in practice

Understanding parents’ experiences of caring for a child with congenital heart disease

Literature review of the impact of caring for a child with congenital heart disease

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Congenital heart disease (CHD) effects one in every 8,000 births in the UK and across Europe (Franklin et al 2015). It can be linked to genetic or chromosomal abnormalities and the direction of treatment depends on the complexity of the defect and is adapted for each child (Yuan and Jing 2009). Caring for a child with CHD can affect the emotional, social and financial aspects of the parents’ quality of life (Azhar et al 2016). One fifth of parents struggle to cope and after their child’s diagnosis parents express signs of depression. Marital relations can become strained due to the emotional and financial burden of CHD (Lemacks et al 2013). Providing suitable support to parents and families is an important part of the care of a child with CHD and this review aimed to explore what issues were significant and identified by parents. 


A systematic search was conducted on three databases: CINAHL, PsycInfo and PubMed to identify literature that explored the experiences of caring for a child with CHD. Key word synonyms developed using PIO (population, intervention, outcome) were used to develop the search terms. The Boolean operators 'and' and 'or' were used to combine search results to refine and focus the search.  Inclusion and exclusion criteria were then applied to the search results to identify the six papers that were deemed suitable for this literature review.


Two key findings emerged: the impact of the diagnosis on the role of parents and the interactions between parents and healthcare professionals.

The impact of a CHD diagnosis was found to affect parental mental health (McKechnie et al 2015, Bruce et al 2013, Harvey et al 2013). Feelings of anxiety, stress and depression were identified at antenatal diagnosis and following the birth. Parents also identified that they felt their role was diminished in the initial care of their child during hospitalisation that led to feelings of poor bonding (Fonseca et al 2012). In particular, mothers described the journey from diagnosis to treatment and surgery as chaotic and found it challenging to promote normality throughout the process (Harvey et al 2013). They felt they could not provide for all their baby’s needs as they were so complex.

Interactions with healthcare professionals (HCPs) were found to be difficult and challenging for parents in the studies by Bratt et al (2015) and McKechnie et al (2015). Although parents described many positive interactions, it was the negative encounters that had a lasting impact on them. McKechnie et al (2015) found parents independently expanded their responsibilities to become experts and advocates for their child, as they found it took HCPs a while to provide comprehensive, easily understandable information. Bratt et al (2015) identified that parents struggled with the expectations of HCPs and how their role, and information needs were viewed. A desire was expressed for their emotional well-being to be assessed in conjunction with their information needs.

Implications for practice

The importance of understanding the psychological impacts a CHD diagnosis can have on parents has been highlighted by this literature review. A greater understanding of these stresses - from diagnosis to treatment and through to further follow up interventions - will help nurses provide effective, holistic care for parents.


  • Azhar AS, Al Shammasi Z and Higgi R (2016) The impact of congenital heart diseases on the quality of life of patients and their families in Saudi Arabia. Biological, psychological, and social dimensions. Saudi Medical Journal. 37, 4, 392-402.
  • Bratt EL, Järvholm S, Ekman-Joelsson B et al (2015) Parent's experiences of counselling and their need for support following a prenatal diagnosis of congenital heart disease – a qualitative study in a Swedish context. BMC Pregnancy and Childbirth. doi: 10.1186/s12884-015-0610-4.
  • Bruce E, Sundin K, Lilja C (2013) Mothers' lived experiences of support when living with young children with congenital heart defects. Journal for Specialists in Pediatric Nursing. 19, 1, 54-67.
  • Fonseca A, Nazaré B, Canavarro M (2012) Parental psychological distress and quality of life after a prenatal or postnatal diagnosis of congenital anomaly: A controlled comparison study with parents of healthy infants. Disability and Health Journal. 5, 2, 67-74.
  • Franklin R, Cunningham D, Bradley A et al (2015) National Congenital Heart Disease Audit Report 2011-2014. National Institute for Cardiovascular Outcomes Research, The National Congenital Heart Disease Audit and University College London
  • Harvey K, Kovalesky A, Woods R et al (2013) Experiences of mothers of infants with congenital heart disease before, during, and after complex cardiac surgery. Heart & Lung: The Journal of Acute and Critical Care. 42, 6, 399-406.
  • Lemacks J, Fowles K, Mateus A et al (2013) Insights from parents about caring for a child with birth defects. International Journal of Environmental Research and Public Health. 10, 8, 3465-3482.
  • McKechnie A, Pridham K, Tluczek A (2015) Walking the "emotional tightrope" from pregnancy to parenthood: Understanding parental motivation to manage health care and distress after a fetal diagnosis of complex congenital heart disease. Journal of Family Nursing. 22, 1, 74-107.
  • Yuan S, Jing H (2009) Palliative procedures for congenital heart defects. Archives of Cardiovascular Diseases. 102, 6-7, 549-557.

Charlotte Hambly was a nursing student at the time this was written and is now a staff nurse at Great Ormond Street Hospital for Children NHS Foundation Trust in London. Andrea Cockett is a senior teaching fellow at Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King’s College, London. Written on behalf of the RCN’s Research in Child Health community.

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