The meaning of parental illness to children: the case of inflammatory bowel disease


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Abstract

BackgroundResearch on the impact of parental illness on children is sparse, and it remains unclear what kind of support, if any, families would value. This paper presents findings from the first investigation to explore the experiences of young people who have a parent with inflammatory bowel disease (IBD).Design and methodsThis qualitative study involved interviews with 23 young people, aged between six and 20 years, who have a parent with IBD. A range of non-verbal techniques was used to facilitate interviews with young children. Data were analysed using the framework approach.ResultsParticipants varied in their understanding and perception of their parent's condition and the extent to which they discussed it with family and friends. Some reported being unaffected by their parent's illness. The main negative effects on everyday life were restrictions on social activities, parents being unable to do housework, children having to be well-behaved and parents becoming withdrawn or irritable. Experiences could lead to feelings of sadness, worry, anger and guilt. The few who reported positive effects described spending time with the parent while ill, being allowed to be more independent and being close as a family. Relatives, friends, neighbours, service providers and young people all played a role in helping to manage the situation, and most participants felt that their family did not need additional support. However, some young people would value advice and information regarding the condition and opportunities to meet others in a similar situation.ConclusionIBD is a highly variable condition, with substantial differences in the extent to which it impinges on the lives of family members. In addition to supporting patients, health professionals have an important role to play in offering advice and information to others affected by the illness, including children.

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