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Building Relationships to Improve Discharge Guidance for Non-English Speaking Families of Children With Congenital Heart Disease (CHD)

Project Code: BRIDGE-39959449

Project Description:

In the year ending March 2023, the West Midlands had the highest child death rate, and this was highest for children of Black ethnicity (56.6 per 100,000 population) and Asian ethnicity (50.8 per 100,000 population) (National Child Mortality Database 2023). As well as deaths during infancy, deprivation has been associated with higher risk of all congenital anomalies (those occurring at birth), including congenital heart disease (CHD) in the UK (Tenant et al 2011, Knowles et al 2016, RCPCH 2023). CHD is the most common congenital abnormality in newborn babies, affecting 6-8/1000 live births (Pandaya et al 2016).

The incidence of all forms of CHD in Asian and Black infants is around 50% higher than the White infants. In severe and complex types of CHD that have high infant deaths, such as univentricular heart (half a heart), the incidence in Asian and Black infants is double that for White infants (Knowles et al 2016). Despite the higher incidence of CHD in Black and Asian groups, there is a dearth of evidence about the experience of parents of children with CHD, especially those from non-English speaking families in the UK.

This study will explore of the understanding of CHD in Black and Asian communities within the Midlands and the experience of families caring for a child with CHD at home. It will identify the current provision of discharge information and support by healthcare professionals, and the barriers and facilitators to care, informing the development of culturally tailored interventions to reduce health inequalities.

Anticipated Findings:

Research active organisations have been linked to better patient safety and satisfaction. Additionally, a recent scoping review denoted that implementation of evidence-based practice leads to higher quality of care, improved patient outcomes and decreased healthcare costs.

UK CHD research currently under-represents the experience of people from minoritised ethnic groups, despite it being essential that we learn how to culturally tailor nursing care to ensure optimum care delivery, patient safety and equality. For our most vulnerable babies with complex CHD, empowering parents to spot signs of deterioration in their baby, through language appropriate discharge education, could improve survival rates in the first year of life, long term outcomes and quality of life.

This study will make important contributions to the current dearth of evidence and will assist us to:

  • identify facilitators and barriers to engaging non-English speaking families in CHD research
  • develop insight into the social construction of health beliefs and behaviours, cultural, religious, and socioenvironmental conditions influencing care
  • identify facilitators and barriers to effective management at the family, provider, and healthcare system levels and across the whole CHD pathway

The findings will be transferable to nurse-led discharge care in other congenital cardiac networks where they have a high Black and Asian or non-English speaking population and could inform the national CHD standards and service specifications.

If deemed appropriate from the knowledge obtained, the Congential Heart Assessment Tool (CHAT2) and accompanying staff and parent e-learning resources, will be refined to meet the needs of non-English speaking families. Additionally, the findings will further inform the current development of the CHAT2 mobile application (prototype funded through NIHRi4iFAST) for parental home monitoring.

The findings will also inform the design of future studies for other non-English speaking groups, such as those from Eastern European countries e.g. Polish.

Contact (and Director of Studies for this project):

Prof Kerry Gaskin - Kerry.Gaskin2@bcu.ac.uk

To apply, visit the course page