Living with Congenital Heart Disease

• Research type

  Research Study

• Full title

  Living with Congenital Heart Disease: an exploration of the lived experiences of adolescents, parents and carers.

• IRAS ID

  236843

• Contact name

  Laura Kinsey

• Contact email

  l.kinsey@ljmu.ac.uk

• Sponsor organisation

  Liverpool John Moores University

• Duration of Study in the UK

  5 years, 0 months, 11 days

• Research summary

  Title: Living with Congenital heart disease:an exploration of the lived experiences of adolescents, parents and carers.

  This study is designed to explore the lived experiences of 2 groups of people:-
  1.Adolescents with Congenital Heart Disease, who have required corrective cardiac surgery or intervention
  2.Parents/carers who live with adolescents with Congenital Heart Disease, who have required corrective cardiac surgery or intervention

  Congenital Heart Disease (CHD) is a collective term for a heart condition that occurs during embryonic development, and consists of abnormal formations of the heart walls, valves, or blood vessels. CHD is one of the most common types of birth defect, affecting up to 9 in every 1.000 babies born in the UK. Due to advances in heart surgery and cardiac services, infants are now surviving into adolescence and adulthood.
  
  Adolescents are young people between the ages of 10-19 years, who are developing into adulthood. This transition is a time of change emotionally and physically, and made more challenging if they have a congenital health defect due to the health implications of their condition. This is a relatively under explored group, with their needs poorly documented.
  Parents and carers are an essential support for the adolescent with CHD, so their feelings and experiences need exploring so they can be adequately supported.

  Participants will be recruited from Alder Hey Children's NHS Foundation Trust, and via The Somerville Foundation UK charity that provides support to grown up congenital heart patients.

  Methodology:
  A qualitative, longitudinal research approach will be applied. Semi structured interviews will be employed, at a suitable time and setting for the participant. Participants will be interviewed at 2 points, 12 months apart, to enrich data collection. A systematic and iterative method of data analysis will be employed.

• REC name

  North West - Haydock Research Ethics Committee

• REC reference

  19/NW/0614

• Date of REC Opinion

  4 Feb 2020

• REC opinion

  Further Information Favourable Opinion