title: Parental experiences: care of children with high and intermediate imperforate anus.
abstract: 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.
authors.affiliation: Astrid Lindgren Children's Hospital, Department of Woman and Child Health, Karolinska Institutet, Stockholm, Sweden.
authors.forename: Maria
authors.initials: M
authors.lastname: Ojmyr-Joelsson
authors.forename: Margret
authors.initials: M
authors.lastname: Nisell
authors.forename: Björn
authors.initials: B
authors.lastname: Frenckner
authors.forename: Per-Anders
authors.initials: PA
authors.lastname: Rydelius
authors.forename: Kyllike
authors.initials: K
authors.lastname: Christensson
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000359:Aftercare / Q000592:standards; D001006:Anus, Imperforate / Q000150:complications / Q000523:psychology* / Q000628:therapy; D001294:Attitude to Health; D016022:Case-Control Studies; D002648:Child; D002673:Child, Hospitalized / Q000523:psychology*; D003142:Communication; D003248:Constipation / Q000209:etiology; D005242:Fecal Incontinence / Q000209:etiology; D005260:Female; D006301:Health Services Needs and Demand; D006785:Hospitals, University; D006801:Humans; D008297:Male; D015404:Nursing Methodology Research; D010290:Parents / Q000193:education / Q000523:psychology*; D010353:Patient Education as Topic / Q000592:standards; D011368:Professional-Family Relations; D011787:Quality of Health Care / Q000592:standards*; D011795:Surveys and Questionnaires; D013548:Sweden