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Clinical Nursing Research, Vol. 15, No. 4, 290-305 (2006)
DOI: 10.1177/1054773806291856
© 2006 SAGE Publications

Parental Experiences: Care of Children With High and Intermediate Imperforate Anus

Maria Öjmyr-Joelsson

Astrid Lindgren Children’s Hospital, Department of Woman and Child Health, Karolinska Institutet, Stockholm, Sweden, Division of Pediatric Surgery

Margret Nisell

Astrid Lindgren Children’s Hospital, Department of Woman and Child Health, Karolinska Institutet, Stockholm, Sweden, Child and Adolescent Psychiatric Unit

Björn Frenckner

Astrid Lindgren Children’s Hospital, Department of Woman and Child Health, Karolinska Institutet, Stockholm, Sweden, Division of Pediatric Surgery

Per-Anders Rydelius

Astrid Lindgren Children’s Hospital, Department of Woman and Child Health, Karolinska Institutet, Stockholm, Sweden, Child and Adolescent Psychiatric Unit

Kyllike Christensson

Astrid Lindgren Children’s Hospital, Department of Woman and Child Health, Karolinska Institutet, Stockholm, Sweden, Reproductive and Perinatal Health Care Department of Caring and Public Health Sciences, Mälardalens Högskola, Sweden

In this study parental experiences of care of children with high and intermediate imperforate anus were evaluated. A group of 45 parents of children with high and intermediate imperforate anus and two control groups participated. Data collection with individual questionnaires concerning the child's hospital care, information to the parent and the child, and involvement in the care of the child were performed. Parents of children with imperforate anus reported being less satisfied with the care of their child, and they were less content with information about their child's treatment compared with the control groups. The parents had been extremely involved in the follow-up treatment. Constipation and fecal incontinence are common and involve suffering for the children and their parents. Parents have to be motivated and supportive and have a great deal of patience to be able to put up with caring for these children, and it seems as if health care professionals have underestimated their problems.

Key Words: imperforate anus • parental experiences • care of children


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