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61 Do parents find the red flags toolkit useful? a qualitative exploration of the experiences of parents caring for infants with shunt-dependent circulations
  1. Nina Taylor,
  2. Jo Wray
  1. GOSH

Abstract

Background Approximately 7 in every 1,000 babies born in the UK have a form of congenital heart disease (CHD) (Townsend et al., 2013). Current treatment for infants born in the UK with the most complex forms of CHD, including uni-ventricular variants, is to undergo a three-stage surgical palliation. Stage one surgery results in the formation of a ‘shunt-dependent’ cardio-pulmonary circulation. This shunt dependent circulation is employed to sustain the infant to around 6 months of age when it is hoped that they will have grown sufficiently to successfully undergo the second stage of surgery. During this inter-stage period infants are referred to as fragile babies due to their increased susceptibility to rapid clinical deterioration and sudden cardio-vascular associated death. The Red Flags toolkit is provided to parents of fragile infants to equip them with the knowledge and skills to care for their infants at home.

Aim The aim of this study is to explore the experiences of parents caring for shunt-dependent infants at home in reference to the Red Flags toolkit.

Methods This study employed a qualitative approach using in-depth semi structured interviews with parents of fragile infants.

Findings The Red Flags toolkit empowered parents to care for their infants at home, although feelings of anxiety resided. The importance of teaching was highlighted. Themes identified from the data: Empowerment, Teaching and Anxiety. The findings from this study informed further development of the toolkit and the teaching provided by HCPs to parents in order to better meet their needs as care providers.

Conclusion It is apparent from the findings that parents do indeed find the Red Flags toolkit useful, but that this opinion sits within a broader context. This study emphasises the requirement for further research into the specific learning and information needs of the parents of fragile infants.

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