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Psychosocial consequences of high and intermediate imperforate anus
Department of Woman and Child Health Child and Adolescent Psychiatric Unit, Karolinska Institutet.ORCID iD: 0000-0002-0221-8631
2005 (English)Licentiate thesis, comprehensive summary (Other academic)
Abstract [en]

Imperforate anus including lack of a normal anorectum is an uncommon malformation. The parents of children born with high and intermediate imperforate anus have to take a big responsibility for the follow-up treatment. It has been revealed that children with imperforate anus have psychosocial problems, though knowledge of this is limited.

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

Methods: In Paper I, the purpose was to illuminate the children s and parents experiences of imperforate anus and to create a baseline for further research. Interviews were done with three patients with high imperforate anus who had had severe problems with the malformation, and with their parents (5). Answers to the open-ended questions were analyzed with a qualitative method, editing analysis style . In Paper II and Paper III, 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 59 items for the parents and 45 items for the children, covering psychosocial domains, one physical domain and one domain on experiences of hospital care. The parents filled in the Child Behavior Checklist (CBCL), and the children s teachers filled in the Teacher s Report Form (TRF). Two groups of children along with their parents served as comparison groups. They included 30 children with juvenile chronic arthritis and 32 healthy children.

Results: Paper I: The parents were outspoken in the interviews, and the children s answers were meagre. Four categories of effects of the malformation were revealed: physical, emotional, social, and family. The emotional effects permeated the interviews; the parents suffering was overwhelming. In Paper II, the children with imperforate anus displayed an overall positive attitude; they reported that they were in a good mood, that they liked school, and that they had good relationships with peers. Furthermore, the children had fecal incontinence and constipation, according to parents. In the CBCL, the children in the index group were assessed to have significantly more emotional/behavioral problems than the children in Comparison Group I. In the TRF, the teachers reported few symptoms for the index group children. Paper III showed disagreement on psychosocial variables from children with imperforate anus and their mothers (on a pair level). Differences were found in particular on psychological variables, i.e. the child s emotional life. The competence scales in the CBCL revealed no differences between the index group and the other two groups. In the TRF, the teachers assessed the children with imperforate anus to be less adapted and adjusted in school than the children in comparison groups.

Conclusions: Parents of children with high imperforate anus have to go through difficult experiences associated with the malformation. Children with imperforate anus in this study seem to be well adjusted psychosocially, despite fecal incontinence and/or constipation. The children might have some psychosocial difficulties, though informants do not agree. It is vital to assess the children s psychosocial function from more than a single informant. Psychosocial issues are crucial to children with imperforate anus and to their parents, and qualified advice and assistance should be a central part of their continuing care. Perhaps collaboration with expertise from child and adolescent psychiatry may be required.

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet , 2005. , 44 p.
Keyword [en]
imperforate anus, psychosocial, children, parents, fecal incontinence, multiple informant assessment
National Category
Psychiatry
Identifiers
URN: urn:nbn:se:rkh:diva-1047ISBN: 91-7140-532-1 (print)OAI: oai:DiVA.org:rkh-1047DiVA: diva2:747938
Available from: 2014-09-17 Created: 2014-09-17 Last updated: 2015-08-27Bibliographically approved
List of papers
1. How a family is affected when a child is born with anorectal malformation: Interviews with three patients and their parents
Open this publication in new window or tab >>How a family is affected when a child is born with anorectal malformation: Interviews with three patients and their parents
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2003 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 18, no 6, 423-432 p.Article in journal (Refereed) Published
Abstract [en]

Increased knowledge about families with a malformed child affects nursing practice. This study illuminates the experiences and psychosocial situation of 3 patients with imperforate anus and their parents. A qualitative method has been used to analyze the data. We found that the parents’ experiences of suffering were overwhelming and that the 3 patients had been depressed during periods. The patients were not as open as their parents; we need to devise better tools to explore and understand children’s experiences. The children and their parents need special care and an opportunity to express their anxieties.

Keyword
imperforate anus, parents’ experiences, children
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:rkh:diva-801 (URN)10.1016/S0882-5963(03)00029-0 (DOI)
Available from: 2014-04-08 Created: 2014-04-08 Last updated: 2015-08-27Bibliographically approved
2. High and intermediate imperforate anus: psychosocial consequences among school-aged children
Open this publication in new window or tab >>High and intermediate imperforate anus: psychosocial consequences among school-aged children
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2006 (English)In: Journal of Pediatric Surgery, ISSN 0022-3468, E-ISSN 1531-5037, Vol. 41, no 7, 1272-1278 p.Article in journal (Refereed) Published
Abstract [en]

Background/Purpose

Imperforate anus is an unusual malformation, which, even after surgical intervention, usually entails constipation and fecal incontinence. This study aimed to evaluate ongoing psychosocial effects of this birth defect in school-aged children.

Methods

Twenty-five children born with high and intermediate imperforate anus participated in the study, along with their parents and classroom teachers. One group of healthy children and 1 group of children with juvenile chronic arthritis, along with their parents, served as controls. Children and parents individually answered a questionnaire devised for this study. Parents filled out the Child Behavior Checklist and the children's teacher filled out the Teacher's Report Form.

Results

According to test results, children with imperforate anus were happy and optimistic. They liked school better and reported better relationships with schoolmates than the other children. The index group reported statistically significantly more frequent constipation. According to parental responses, the imperforate-anus children suffered from fecal incontinence and odor, as well as constipation (P < .001). Index-group parents reported on the Child Behavior Checklist that their children had more emotional and behavioral problems. On the Teacher's Report Form, teachers reported few problems for the same children.

Conclusions

Patients with imperforate anus did not experience psychosocial impairment despite significant functional problems.

Place, publisher, year, edition, pages
Elsevier, 2006
Keyword
Imperforate anus, Malformation, Psychosocial, Children, Fecal incontinence, Constipation
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:rkh:diva-800 (URN)10.1016/j.jpedsurg.2006.03.007 (DOI)
Available from: 2014-04-08 Created: 2014-04-08 Last updated: 2015-08-27Bibliographically approved
3. Views on Psychosocial Functioning: Responses from Children with Imperforate Anus and Their Parents
Open this publication in new window or tab >>Views on Psychosocial Functioning: Responses from Children with Imperforate Anus and Their Parents
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2008 (English)In: Journal of Pediatric Health Care, ISSN 0891-5245, E-ISSN 1532-656X, Vol. 22, no 3, 166-174 p.Article in journal (Refereed) Published
Abstract [en]

Introduction

High and intermediate imperforate anus (IA) is a congenital malformation that may entail psychosocial consequences. The objective was to examine disagreement on psychosocial functioning in reports between children with high and intermediate IA and their mothers.

Method

Twenty-five children with IA and their mothers participated, including two groups for comparison. The responses on 15 psychosocial variables were compared on pair-level, between the mothers and their child, within each group.

Results

Statistically significant differences were found on the psychological variables in all groups, for example, feelings of sadness. For responses related to the social variables, few statistical discrepancies were found, except for the items “bullied” and “teased.” Two specific discrepancies emerged in responses from children with IA and their mothers, the child's self-confidence and the mothers' thinking about their child's disability.

Discussion

It is vital to gather information from both the child and the parents in order to obtain a complete assessment of the child. The course of disagreement can give valuable information for future care, including where to exert extra effort.

Place, publisher, year, edition, pages
Elsevier, 2008
Keyword
high and intermediate imperforate anus, psychosocial consequences, children
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:rkh:diva-798 (URN)10.1016/j.pedhc.2007.04.016 (DOI)18455065 (PubMedID)
Available from: 2014-04-08 Created: 2014-04-08 Last updated: 2015-08-27Bibliographically approved

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