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Psychosocial aspects on children with imperforate anus and their parents
Department of Woman and Child Health Child and Adolescent Psychiatric Unit, Karolinska Institutet.ORCID iD: 0000-0002-0221-8631
2009 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Place, publisher, year, edition, pages
Stockholm: Karolinska institutet , 2009. , 67 p.
Keyword [en]
Psychosocial experiences, Psychosocial function, Children with imperforate anus, Parents, Multiple informant assessment
National Category
Psychiatry
Identifiers
URN: urn:nbn:se:rkh:diva-1046ISBN: 9789174093421 (print)OAI: oai:DiVA.org:rkh-1046DiVA: diva2:747933
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
4. Social Issues Among Children With High or Intermediate Imperforate Anus: A Proxy Perspective
Open this publication in new window or tab >>Social Issues Among Children With High or Intermediate Imperforate Anus: A Proxy Perspective
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2009 (English)In: Journal of Child and Adolescent Psychiatric Nursing, ISSN 1744-6171, Vol. 22, no 3, 132-142 p.Article in journal (Refereed) Published
Abstract [en]

PROBLEM:  Children with imperforate anus (IA) may be psychosocially affected.

METHODS:  Parents of children with IA and parents in two comparison groups rated their children using a study-specific questionnaire and the Competence Scales in the Child Behavior Checklist (CBCL). Teachers rated Academic and Adaptive Functioning Scales in the Teacher's Report Form (TRF).

FINDINGS:  School items were rated favorably by the fathers of children with IA, and mothers reported less expression of their children's will. Children with IA were socially competent according to CBCL, although they received lower ratings on the TRF.

CONCLUSIONS:  Psychosocial issues seem to be challenging for children with IA, and this needs attention in care management.

Place, publisher, year, edition, pages
Oxford: Wiley-Blackwell, 2009
Keyword
children with imperforate anus, psychosocial issues, parents, proxy, school
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:rkh:diva-516 (URN)10.1111/j.1744-6171.2009.00179.x (DOI)
Available from: 2013-02-20 Created: 2013-02-20 Last updated: 2015-08-27Bibliographically approved
5. Psychosocial Experiences of Parents of a Child With Imperforate Anus
Open this publication in new window or tab >>Psychosocial Experiences of Parents of a Child With Imperforate Anus
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2009 (English)In: Journal for Specialists in Pediatric Nursing, ISSN 1744-6155, Vol. 14, no 4, 221-229 p.Article in journal (Refereed) Published
Abstract [en]

PURPOSE.  This study aims to examine the psychosocial experiences of parents of children with imperforate anus (IA) and to describe their potential positive experiences.

DESIGN AND METHODS.  Parents of IA children and a comparison group answered a questionnaire, which was analyzed quantitatively and with manifest content analysis.

RESULTS.  Social relationships and respect for the child's will were more affected among IA mothers. Positive experiences were revealed in relation to the child, the parent, and the family.

PRACTICE IMPLICATIONS.  Support to parents in caring for a child with IA should be individualized and occasionally undertaken through collaboration with experts from child and adolescent psychiatry.

Place, publisher, year, edition, pages
Oxford: Wiley-Blackwell, 2009
Keyword
children with imperforate anus, nursing, parents, positive experiences, psychosocial, quantitative/qualitative
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:rkh:diva-515 (URN)10.1111/j.1744-6155.2009.00192.x (DOI)19796321 (PubMedID)
Available from: 2013-02-20 Created: 2013-02-20 Last updated: 2015-08-27Bibliographically approved
6. The Imperforate Anus Psychosocial Questionnaire (IAPSQ): Its construction and psychometric properties
Open this publication in new window or tab >>The Imperforate Anus Psychosocial Questionnaire (IAPSQ): Its construction and psychometric properties
2009 (English)In: Child and Adolescent Psychiatry and Mental Health, ISSN 1753-2000, Vol. 3, no 15Article in journal (Refereed) Published
Abstract [en]

The origin of the present study was to develop the liaison work between the disciplines of child and adolescent psychiatry and paediatric surgery and nursing, so as to improve the quality of treatment and care of a group of children with imperforate anus (IA) and their families. Imperforate anus is a congenital disease involving a deformity of the anorectum. The early surgery and invasive follow-up treatment associated with IA may affect the child psychosocially, including the childparent relationship. By developing and testing a questionnaire for children born with anorectal anomalies, a tool for measuring psychosocial functioning can be realized.

Methods:

First, a literature review on "Imperforate Anus" was performed. Second, an exploratory interview study was conducted with patients/adolescents with IA and their parents. The findings from these interviews were the foundation for construction of the questionnaire. The Imperforate Anus Psychosocial Questionnaire (IAPSQ) was tested and revised three times before its completion. It contains 45 items on Likert scales. A total of 87 children completed the IAPSQ: 25 children with IA and two comparison groups. Face and content validity were considered. The Rasch approach, an item response theory model, was used to evaluate the psychometric properties of the IAPSQ, where item difficulty and person ability are concurrently approximated.

Results:

The findings of the Rasch analysis revealed that the psychological dimension was reasonable, and that person reliability (0.83) was moderate and item reliability (0.95) was sufficient. The social dimension showed satisfactory item reliability (0.87). The person reliability (0.52) of the social dimension was weak. Content validity seemed to be established and construct validity was recognized on the psychological dimension.

Conclusion:

The IAPSQ provides a reasonably valid and reliable measure of psychosocial functioning for clinical use among children with IA, although some revisions are suggested for the next version of the IAPSQ. By using the Rasch model, we discovered that specific items should be discarded and other items should be reformulated to make the questionnaire more "on target". The social dimension has to be expanded with further items to reasonably capture a social dimension.

Place, publisher, year, edition, pages
London: BioMed Central, 2009
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:rkh:diva-517 (URN)10.1186/1753-2000-3-15 (DOI)
Available from: 2013-02-20 Created: 2013-02-20 Last updated: 2015-08-27

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