Biographic disruption in families of a child with short bowel syndrome
Research type
Research Study
Full title
Biographic disruption in families living with a child with Short Bowel Syndrome
IRAS ID
221053
Contact name
Margaret Coffey
Contact email
Sponsor organisation
University of Salford
Duration of Study in the UK
0 years, 6 months, 0 days
Research summary
This study is a collaboration between the University of Salford and Manchester Royal Children’s Hospital to carry out a primary research study on ‘Biographic disruption’ in families living with a child with Short Bowel Syndrome’.
Short bowel syndrome is a serious and rare condition affecting about 2 per million of the population in the UK. The condition results from massive loss of bowel that makes the child’s remaining bowel insufficient to absorb the necessary nutrients to promote growth and development. This complex condition needs multiple visits and admissions to a specialist centre with specialist nutritional equipment set up at the home. Multiple surgical procedures may be necessary and intravenous nutrition at home is usually a necessity until the bowel adapts.
Biographic disruption is a concept, put forward by Bury (1982) that refers to the social experience of living with disability or chronic illness. Bury argues that the meaning of an illness for an individual can be seen as operating at two levels: 1) in terms of the problems, social costs and consequences of the disability; and 2) the (symbolic) significance or connotations that particular illnesses carries.
This study builds on an earlier study titled: ‘Peadiatric Ultrashort Bowel Syndrome: Parent perceptions on care and family biographic disruption’, conducted by Whiteley (2014), from the Manchester Medical School at the University of Manchester (REC reference: 13/NW/0526; IRAS project ID: 117428). Whiteley’s study interviewed parents, and recommended further research to develop a better understanding of the lived experience of ultrashort bowel syndrome for patients and their families, in order to give patients and their families the best possible care. We intend to build on the recommendations from the previous study, and extend it to also engage with siblings.
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
17/EM/0129
Date of REC Opinion
8 May 2017
REC opinion
Further Information Favourable Opinion