Caregivers’ experiences of having a child with Exstrophy/Epispadias
Research type
Research Study
Full title
What are parents/caregivers’ experiences of having a child with Bladder Exstrophy/Epispadias? Developing a resource for families
IRAS ID
322512
Contact name
Lucy Ferguson
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
1 years, 6 months, 30 days
Research summary
Research Summary
Bladder Exstrophy and Epispadias Complex (BEEC) refers to a group of congenital conditions affecting the bladder, the urethra, the genitals and the pelvic bone. There is a spectrum of severity within the conditions, from Epispadias (mildest) to Bladder Exstrophy (moderate) and Cloacal Exstrophy (most severe). The complex more commonly affects males and is rare, with Bladder Exstrophy occurring in approximately 1-2 in 50,000 births. Surgery can address the key anatomical aspects of the conditions, however continual specialist multidisciplinary care is required to ensure renal function is preserved and many patients require additional surgery to achieve urinary continence and satisfaction with genital appearance.The study aims to explore parents/caregivers' experiences of having a child with Bladder Exstrophy or Epispadias, including how parents describe their experiences from diagnosis to the current time, how they adapt and the advice they would like to share with other families. The study also aims to use these experiences to develop a resource for families when they receive a diagnosis for their child and to provide recommendations for specialist multidisciplinary Bladder Exstrophy teams around how they can best support families throughout their child’s journey.
An exploratory qualitative design using semi-structured interviews will be used. Participants will be parents/caregivers of children aged 4-18 years who have a diagnosis of Bladder Exstrophy or Epispadias. The sample will be recruited from Bladder Exstrophy and Epispadias clinics at Royal Manchester Children’s Hospital. Participants will be invited to take part in a semi-structured interview, guided by service-user involvement and previous research. Data will be analysed using inductive thematic analysis, which allows for the description of patterns across qualitative data.
The study is funded by the University of Liverpool, as part of a Doctoral-level project. The student researcher is currently enrolled on the Doctorate in Clinical Psychology programme.
Summary of Results
Although some research has explored the experiences of caregivers of children with bladder exstrophy and/or epispadias, few have used a qualitative approach, and only one has recruited fathers alongside mothers. This study aimed to build on the limited evidence base, to broaden understanding of the experiences of caregivers of a child with the conditions.
Twelve parents of children with bladder exstrophy and/or epispadias aged four or older and under the care of Royal Manchester Children's Hospital (RMCH) were interviewed and transcripts were analysed. Parents spoke about the early stages of their child's life as challenging, particularly around diagnosis. They also described ongoing challenges such as managing the social implications of the condition, their child's toileting needs and uncertainty about the future. Parents reflected on how they used existing knowledge and developed new skills to manage these challenges, and some reported experiencing personal growth. Finally, parents described the importance of support from the specialist team, their local community, and other parents with shared experiences. Findings illustrate the challenges parents experience when caring for a child with bladder exstrophy/epispadias, but also how they manage these challenges and take positives from the experience. Recommendations are provided to help facilitate better understanding of the conditions outside of specialist multidisciplinary teams and allow families to access peer support.REC name
Wales REC 4
REC reference
23/WA/0111
Date of REC Opinion
17 Apr 2023
REC opinion
Favourable Opinion