Exploring parents’ decisions around the care of their child with CDH
Research type
Research Study
Full title
Exploring parents’ decisions around the care of their child with CDH (The Hope Dies Last” Exploring parents experiences of decision-making in Congenital Diaphragmatic Hernia: a qualitative analysis)
IRAS ID
339918
Contact name
Katie Robb
Contact email
Sponsor organisation
University of Glasgow
Duration of Study in the UK
0 years, 5 months, 31 days
Research summary
Congenital diaphragmatic hernia (CDH) is a rare birth defect which causes abdominal contents to move through a hole in the diaphragm and into the chest. This can have a significant impact on the infant's lung development and results in death in approximately 30% of cases. This can cause considerable distress for parents at the point of diagnosis (usually prenatally), throughout pregnancy and at birth. The treatment of children born with CDH involves careful multi-disciplinary planning and can often involve aggressive treatment such as surgery and heart and lung bypass from birth. Disease progression can vary greatly resulting in a variety of treatments at different time points.
Parents of infants with CDH have reported feeling insecure and powerless due to uncertainty and lack of transparent communication with medical professionals. This study aims to explore parents’ decision-making process during the care of their child with CDH, focusing on what information influenced their decisions around their child’s care.
Qualitative, retrospective, semi-structured interviews will be conducted with parents whose children have received treatment for CDH at Glasgow’s Royal Hospital for children, a leading centre in the treatment for CDH in the UK. Interviews will be conducted in person, online, or by phone, and will last one hour. Interpretative Phenomenological Analysis (IPA) will be used to analyse interview content. This will be the first known study to examine parents’ decision-making processes in the care of CDH and will provide clinicians with valuable insights into how they can support parents with their decisions, throughout their child’s care.
REC name
East of Scotland Research Ethics Service REC 2
REC reference
24/ES/0055
Date of REC Opinion
14 Aug 2024
REC opinion
Further Information Favourable Opinion