Psychological Distress Associated With Home Parenteral Nutrition in Swedish Children, Adolescents, and Their Parents: Preliminary Results

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Abstract
Objectives Home parenteral nutrition (HPN) is life saving in some patients with intestinal failure. Clinical experience suggests that there may be psychologic problems in HPN children, including food refusal on reintroduction of food, parent–child conflict, sibling rivalry, and disruption of family routine. The aim of this study was to investigate the psychologic distress in children with HPN and the social integration of their parents. Methods The parents were asked to fill in three questionnaires anonymously– one regarding the HPN procedures; the Child Behavior Checklist, which provides a standardized description of children's behavioral problems, as reported by their mothers; and the Interview Schedule for Social Interaction (ISSI), which in its short form comprises 30 questions about social network and social support. Results The Child Behavior Checklist questionnaires were returned from 20 families (80% response), and the ISSI questionnaires were returned from 21 families (84% response). Children and adolescents with HPN are quite distressed psychologically. The subscale within ISSI that measures social integration was significantly higher in the HPN group, whereas the subscale that measures adequacy of social integration did not differ between the groups. Both subscales measuring attachment were significantly lower in the HPN group. Conclusions This study shows that children and adolescents with HPN are quite distressed psychologically, even though the exact reason for this may be somewhat unclear. The social integration of the parents is high, whereas attachment, which deals with deeper, emotional relations, is negatively affected.