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Editor,—Jeppesen and colleagues (Gut1999;44:844–852) used the non-disease specific sickness impact profile (SIP) and the disease specific inflammatory bowel disease questionnaire (IBDQ) to assess the quality of life of 49 patients receiving home parenteral nutrition (HPN). They found a significant reduction in the quality of life of these patients compared with patients with anatomical or functional short bowel not receiving HPN.
We showed recently that having a child on HPN has a major impact on the quality of life of the parents. We studied 11 parents of children with chronic intestinal failure requiring HPN. Following an initial focus group meeting to identify important issues, semi-structured interviews were held with the parents. The General Health Questionnaire (GHQ-28) and a questionnaire developed for the British Artificial Nutrition Survey (BANS) were also administered. A control group of 11 parents with age matched healthy children also answered the BANS questionnaire.
The GHQ-28 showed that seven of the 11 parents with children on HPN exceeded the threshold for psychiatric morbidity. The BANS described a significant deterioration before and after the child's illness for social life (p<0.007), family life (p<0.007), sex life (p<0.003), and work (p<0.004) in these parents compared with controls. Parents caring for children on HPN were also more likely to be physically tired and to have difficulties in taking holidays, going shopping and spending time with their partners. Many of them admitted to feeling frustrated, annoyed, stressed, and having problems sleeping.
With the advent of HPN, increasing numbers of children with chronic intestinal failure are now being managed at home. Although HPN has given life to many of these children who would otherwise have died,1 the burden of care on these parents is enormous and could have a significant impact on their quality of life. Health care professionals should be aware of this problem and endeavour to offer the necessary support for families who provide this demanding type of care. The services of a dedicated community nutritional support team is recommended.
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