Parents play a crucial role in the life of a child suffering from an anorectal malformation (ARM), since their guidance contributes to the degree to which the child learns to cope with his or her disability. We investigated whether they experience stress in parenting such a child and also attempted to identify somatic or behavioral characteristics in the child that influence the stress of parenting. The parents of 109 children (69 males, 40 females; median age 5.9 years, range 1-18 years) with an ARM (58 low, 10 intermediate, 41 high) were studied. The Nijmegen Questionnaire on Child-rearing Situations (NQCS) was used to investigate the existing parenting situation. Behavioral characteristics of the children were studied by means of the Child Behaviour Checklist (CBCL) and the Teacher Report Form (TRF). In a semi-structured interview, we investigated how parents experienced the implications of the disability in everyday life with their child. Our study showed that as far as the perception of parenting stress is concerned, parents of children with an ARM do not differ from those with healthy primary-school children. Within the group of parents with ARM-afflicted children, the parents of older, incontinent children experienced relatively more stress, especially when the child concerned was male. With regard to the children's behavior, the parents and teachers under investigation did not report a higher than normal incidence of deviant behavior. However, when individual parents observed difficult behavior in their child, they found it harder to deal with than the incontinence for feces. Regarding the implications of the disorder for their everyday lives, parents were concerned and indicated a need for specific counselling. We conclude that having a child with a somatic affliction, in this case an ARM, does not automatically imply that the parents experience child-rearing problems. However, certain groups of parents are more at risk, i.e., parents with older, incontinent sons and parents with children exhibiting behavioral problems. In addition, our study shows that parents do have difficulties in coping with the implications of the disorder and express a need for support. We feel that patient care can be improved if aid is tailored to these specific problems.

Although most patients with operated Hirschsprung's disease (HD) have good continence in adulthood, a majority have postoperative defection problems during school age. Persistence of chronic constipation and/or incontinence may have considerable consequences for psychosocial development, parent-child interactions, quality of life, and the child's general condition. Considering these consequences, it is important to treat these problems as early as possible. From a biopsychosocial view, we developed a multidisciplinary treatment aimed at resolving defecation problems by teaching the child bowel self-control, primarily by training optimal defecation skills and subsequently toilet behavior. This treatment, carried out by a child psychologist, a pediatric physiotherapist, and a pediatric surgeon, consists of five steps: explanation; extinction of fear and avoidance behavior; learning new defecation behavior; learning an adequate straining technique; and generalization toward daily life. The effect of the treatment was investigated retrospectively in 16 boys with operated HD. The children improved significantly in all aspects during treatment, suggesting that multidisciplinary treatment can significantly reduce the postoperative chronic bowel problems of most children with operated HD. The treatment was as effective in young children (2-5 years) as in older children (5-14 years).

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In a retrospective study, we examined whether multidisciplinary treatment based on a biopsychosocial approach and carried out by a pediatric surgeon, a child psychologist, and a pediatric physiotherapist is successful in reducing defecation problems (incontinence and/or constipation) in children with operated anal atresia (AA) (mean age 6.9 +/- 4.01 years). A second question was whether this treatment is successful in young children aged 2-5 years. The multidisciplinary approach consisted of standard medical treatment and a behavioral program to teach children and their parents adequate defecation behavior including an adequate straining technique. Forty-three children aged 2-16 years were included: 27 boys and 16 girls with AA, of whom 26 had high or intermediate and 17 low AA. Besides continence and constipation, defecation behavior and straining technique were evaluated. The children improved significantly during treatment in all aspects of defecation. No differences in effect of treatment were found between young children (2-5 years) and older ones, so this treatment seems to be equally effective in both age groups. This study demonstrates that both somatic and behavioral factors contribute to the persistence of chronic defecation problems. It is concluded that treatment of these problems in patients with operated AA should include behavioral modification techniques.

Constipation, faecal incontinence, soiling and difficult toilet training remain significant problems in children with Hirschsprung's disease after corrective surgery. Chronic defecation problems can have various negative implications. At the University Medical Centre Nijmegen, a multidisciplinary behavioural treatment was developed to treat defecation problems. In this paper, a prospective controlled study is presented concerning the effect of this treatment upon children suffering from chronic defecation problems following corrective surgery for Hirschsprung's disease. The effect of treatment was studied in 27 children (21M, 6F, mean age 5.2 y, range 2–11 y). Fourteen children were allocated to the experimental treatment group. The 13 children allocated to the waiting‐list control group were also treated following a waiting period of 6 mo. On all outcome variables, children in the experimental treatment group had significantly better results after treatment than children in the waiting‐list control group after the waiting period. No effect of age upon treatment was found. The effect of treatment remained significant on all outcome variables at a mean follow‐up of 7 mo after the end of treatment. Conclusion: Multidisciplinary behavioural treatment is successful in decreasing chronic defecation problems in children with Hirschsprung's disease.