Quality of life and support needs in families with cleft lip/palate
Research type
Research Study
Full title
What is the impact of cleft lip/palate on families' quality of life, and how might healthcare and support be improved?
IRAS ID
210382
Contact name
Nicola Stock
Contact email
Sponsor organisation
University of Bristol
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Each year, one in 600 infants are born with a cleft lip/palate (CL/P), making it one of the most common congenital conditions in the world. Following a diagnosis, parents must process a wealth of new information, come to terms with their baby’s altered appearance, grapple with feeding difficulties, manage the intrusive reactions of other people, and allow their new-born to undergo reconstructive surgery. As the child gets older, parents often worry about the impact that CL/P and its ongoing treatment may have on their child’s social relationships, educational achievement and psychological wellbeing. Despite the profound and potentially long-lasting impact of CL/P, relatively little research has effectively focused its attention on the parents’ psychological needs and the child’s early development.
The Cleft Collective, launched in 2012, is the world’s largest CL/P research programme, and represents a unique opportunity to capture comprehensive information about children born with CL/P and their families. Families are recruited into the study after the diagnosis, and asked to contribute questionnaire data at several key time points, along with medical records and biological samples (such as saliva) for genetic testing. While this large resource will be incredibly valuable in addressing some of the key unanswered questions important to families and clinicians, the programme currently lacks an understanding of the impact of CL/P as told from the parents’ own perspective.The aim of the present study is to conduct 60-minute telephone interviews with parents who are currently enrolled in The Cleft Collective study. The interviews will cover a wide range of topics relevant to the parents’ wellbeing and the child’s development. These spoken narratives will later be combined with the statistical data that is already being collected through the questionnaires, to produce pioneering research with significant potential to improve the support that affected children and their families receive.
REC name
South West - Central Bristol Research Ethics Committee
REC reference
16/SW/0245
Date of REC Opinion
6 Sep 2016
REC opinion
Favourable Opinion