An example of psychological adjustment in chronic illness: Hirschsprung’s disease

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Abstract
The aim of this study was to investigate the outcomes after definitive surgical correction for children with Hirschsprung’s disease (HD) and the psychosocial impact of HD on the child and family. The total sample comprised 72 children with HD along with their families. The development of a condition-specific questionnaire measured the functional and psychosocial outcomes for children with HD with parental perception of their child’s condition. Psychiatric measures were also examined to assess psychiatric morbidity. The greatest functional problem after definitive surgery for HD was faecal soiling (76%). The principle findings of the study were that (1) HD did not have a significant impact on the child’s rate of psychiatric morbidity and levels of hopefulness in comparison to the normal population, (2) surgical and psychosocial functioning improved with increasing age and, (3) families remain troubled about their future with HD and dealing with psychosocial difficulties related to the condition (such as distress because of faecal soiling). Specifically, faecal soiling was found to be physically, emotionally and psychosocially distressing complication. Bowel functioning and psychosocial distress improves with increasing age and parental and medical professional support. Despite the significant impairment of faecal continence, we found that children/young adults with HD have minimal psychiatric morbidity, yet experience condition-specific psychosocial problems (e.g. embarrassment and distress/discomfort). HD does not increase the rate of clinical psychiatric morbidity in children and families with HD, but does determine the context of their daily distress and concern.

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