Aim: The overall aim of this thesis was to explore psychosocial consequences on children with high and intermediate imperforate anus and their parents.

Material/Methods: Paper I was an explorative study involving interviews. The purpose was to illuminate the children s and parents experiences of imperforate anus (IA) and to create a baseline for further research. In Papers II-V, study-specific questionnaires were used to collect data from 25 children (8-13 years old) with high and intermediate imperforate anus and from their parents. The questionnaires comprised 45 items for the children and 59 items for the parents, covering psychosocial issues, items on child bowel function, and on experiences of hospital care. The parents also filled in the Child Behavior Checklist (CBCL), and the children s teachers filled in the Teacher s Report Form (TRF). Thirty children with juvenile chronic arthritis and 32 children with no chronic condition, along with their parents, served as Comparison Groups. In Paper VI, the psychometric properties of the child self-reported psychosocial items were evaluated with Rasch analysis.

Results: Four categories of effects of the malformation were disclosed in the interviews: physical, emotional, social, and family effects. The emotional effects permeated the interviews; the parents suffering was evident. In the questionnaires the children with imperforate anus reported being generally happy, they liked school, and had good relationships with peers. According to their parents, the children had fecal incontinence and constipation. In the CBCL, the children with imperforate anus were assessed to have more emotional/behavioral problems than the children with juvenile chronic arthritis. On the CBCL competence scales no differences were found between groups. In the TRF, the teachers reported few emotional/behavioral problems for the children with imperforate anus, though they assessed them to be less adapted in school than were the children with no chronic condition. Differences were found in answers on the psychological items, between the children and their mothers, on the pair level. The mothers of children with imperforate anus rated lower on their child s expression of will and on respecting their child s will, than did the other mothers. Fathers scored school items optimistically. Several parents of children with imperforate anus reported positive experiences in relation to their child s condition involving child development, parental development, and strengthening of family unity. The psychometric properties of the psychological and the social dimension in the child self-report questionnaire were reasonably good.

Conclusions: The children with imperforate anus might have some psychosocial difficulties, though informants do not agree. According to self-report questionnaires, the children appear to be well-adjusted, despite functional bowel problems. Parents of children with imperforate anus have to go through difficult experiences associated with their child s malformation, though some parents also report positive experiences. Psychosocial issues seem crucial to children with imperforate anus and to their parents, and qualified individualized assistance should be a central part of their continuing care to ameliorate or prevent difficulties. Collaboration with expertise from child and adolescent psychiatry may be required. Child autonomy needs more attention. Psychosocial interventions are requested as well as a follow-up study on these children and their parents. Further development of the measurement tools, the study-specific questionnaires, is required.