Social Issues Among Children With High or Intermediate Imperforate Anus: A Proxy Perspective

Journal of Child and Adolescent Psychiatric Nursing, Aug 2009 by Nisell, Margret, Igl, Wilmar, Öjmyr-Joelsson, Maria, Frenckner, Björn, Rydelius, Per-Anders, Christensson, Kyllike

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.

Search terms: Children with imperforate anus, psychosocial issues, parents, proxy, school

Imperforate anus (IA) is an uncommon malformation (1 in 4,000-5,000 births) that has consequences for the dayto-day life of affected children and their parents. High IA involves the lack of a normal anorectum. Within 24 hr of the child's birth, a colostomy is commonly performed in order to empty the child's bowel. To correct this type of malformation, a posterior sagittal anorectoplasty is used (Levitt & Pena, 2005), involving the construction of a new anus. This operation is generally performed when the child is 3 months old. The new anus must be manually dilated to an appropriate size for the child's age, because muscular structures have a tendency to otherwise reduce in size. The parents must learn to perform this procedure, which must be done daily for 2-3 months.

Despite the newly constructed anus and successful operation, children with IA often have some degree of functional disability, usually constipation and fecal incontinence (Pena & Levitt, 2002). These functional problems can lead to social disabilities - for example, odor from soiling can be embarrassing and shameful (Meier, Foster, Guzzetta, & Coin, 1998). Functional defecating disorders can be managed to some extent with enemas, both as a preventive measure and as treatment IA often requires the parents to administer enemas to their child on a regular and frequent basis for several years.

This chronic condition can interfere with the child's and their parents' psychosocial well-being (Hopia, Paavilainen, & Astedt-Kurki, 2005). Psychosocial variables also contribute to the development of psychopathology and thereby determine outcomes for global well-being and health-related quality of life (Levy et al, 2006).

Two settings are especially important for children and adolescents: the family and the school environment First, the immediate family plays an important role for the child in several respects. How the family copes with the child's disability influences how the child copes, and the way the parents interact with the child serves as a model for the child's interactions with friends and future partners (Hay, Payne, & Chadwick, 2004). Having the emotional and practical support of the family is meaningful for the psychosocial well-being of a child with a chronic condition, and may be even more important than for a child without a chronic condition. The most significant aspect contributing to child well-being seems to be how well the family functions in general (Pless & Nolan, 1991). Parents face a special challenge when a child with a chronic condition enters school (Erickson & Ray, 2004).

Second, the school environment (especially teachers, classmates, and other peers) affects the psychosocial wellbeing of the child, as children spend many hours at school engaging in both scholastic and extracurricular activities. A positive school attitude has been shown to be related to higher self-esteem and quality of life (Hartman et al., 2007). For children with chronic conditions, close friendships are particularly important to buffer the impact of specific disease-related stressors (La Greca, Bearman, & Moore, 2002). Childhood peer relationships are important both for preventing bullying and for academic-occupational success (Bollmer, Milich, Harris, & Maras, 2005).

Therefore, the objective of this study was to examine how social issues of children with intermediate or high IA may be affected, from the perspective of their mothers, fathers, and teachers. Additionally, we compared them with two other populations: children with and without a chronic condition.

Methods

Participants

Families with a child with IA and two types of comparison group families participated in this study. Families with a child with high or intermediate IA were recruited from a pediatric surgery clinic at a highly specialized children's hospital in Sweden. Thirty families were available and asked if they were interested and willing to take part in the research project. Written information was sent to the parents, who had given permission, and to their child. Twenty-five families completed the study, comprising 20 fathers, 25 mothers, and 25 children (9 boys, 16 girls) with high and intermediate IA. The mean age of the children at the onset of the study was 10.5 years (SD 1.7 years). All children had had surgery for high or intermediate IA at an early age, and have had regular contact with the hospital's outpatient clinic. The children in the index group represent all children with high and intermediate IA, born between 1987 and 1992 in the regions under the jurisdiction of the surgery unit, who were subsequently operated on, and received follow-up treatment. Of the 25 families participating in this study, 18 were two-parent families; in the other families, the child lived either with the mother (4 families) or alternated between living with their mother and father (3 families). Seventeen of the 25 families (68%) lived in the greater Stockholm area, and the other families lived in other parts of Sweden.