An insight into the experiences of parents with inflammatory bowel disease

AIMS AND OBJECTIVES: To identify parents' views, both positive and negative on: how inflammatory bowel disease (IBD) affects people in their parenting role; effects parents with IBD have noticed in their children; ways of dealing with any difficulties in parenting; and support needed by parents with IBD.

DESIGN: This was a small-scale exploratory study, adopting a qualitative research design. A purposive sample of 19 mothers and five fathers with IBD was recruited through two hospitals and a voluntary group in the north of England.

RESEARCH METHODS: Data were collected through a combination of focus groups and interviews, and analysed using the `framework approach'.

FINDINGS: The main positive effect for parents was developing a closer relationship with their children. When parents were experiencing symptoms there were difficulties in caring for young children; problems taking children to and from school, and attending school events; restrictions in social life; irritability and reduced tolerance of children. When in hospital, it was sometimes difficult to arrange for care of young children. These difficulties caused worry and guilt for parents, and a few spoke of periods of depression. Parents noticed that their children seemed caring and understanding of illness, but were also anxious when the parent was ill or in hospital, and reacted with anger or frustration to restrictions in social activities. Strategies commonly used to deal with difficulties were turning to family for support and trying to control symptoms. Support from health professionals was variable. Parents wanted more practical assistance, information for families on the effects of IBD, and support in coping with the condition. Awareness-raising about IBD was considered important within health, social services, education and housing departments.

CONCLUSIONS: As a group in regular contact with parents with IBD, health professionals have an important role to play in providing support. Staff should be particularly vigilant towards parents with severe symptoms, mothers of younger children, and those receiving limited help from their families.