High and intermediate imperforate anus : A study on children and their parents, concerning aspects of care, psychosocial function and experiences of treatment

Abstract: The overall aim of this thesis was to examine how children with high and intermediate imperforate anus and their parents have been affected by the malformation. Materials: For Paper I three patients with high imperforate anus and their families were interviewed. The patients were born before 1987 and at the time of the interview they were 12, 14, and 22 years old. Papers II-V are based on the same study sample. Twenty-five children with high or intermediate imperforate anus born 1987-1992 and their parents participated in the index group. Two groups of children similar in age and gender distributions, along with their parents, served as controls. Methods: In Paper I an exploratory study was performed with interviews. An interview guide that consisted of open-ended and structured questions was used. The sessions covered many different aspects of the child s malformation, as well as treatment and psychosocial consequences of the defect. In Papers II-V individual questionnaires were used for the children and the parents. The questionnaires were developed on the basis of the previous interview study and covered psychosocial domains and physical domains. An additional questionnaire was used consisting of items about the child s experiences of the medical treatment in early age. To look for emotional or behavioral problems among children, the Child Behavior Checklist (CBCL) was used and filled in by the parents, while teachers filled in the Teacher s Report Form (TRF). Results: In the analysis of the interviews four categories related to effects of the malformation emerged; they were physical, emotional, social, and family. The physical and emotional effects of the child s malformation influenced the family s experiences. Children with imperforate anus exhibited an overall positive attitude on the questionnaires; their psychosocial function seemed to be good even though the children had problems with their bowel functions as compared to the control groups. In the CBCL, the children with imperforate anus were assessed by their parents to have significantly more emotional/behavioral problems than were assessed by parents of the children in control groups. In the TRF, the teachers reported few symptoms for the index group children. Parents reported about extensive care of the child, saying that they had been very much involved in the follow-up treatment. The parents of children with imperforate anus were less satisfied with information received, compared with the parents in the two control groups. There was a gender difference on how responsibility for the child s care was divided between the mother and the father. The children had non-verbal memories of medical treatment early in life, according to their parents reports. Conclusions: Parents of children with imperforate anus had experienced suffering and many difficulties associated with the malformation. Children with imperforate anus in this study did not seem to have any psychosocial impairments, though their parents stated that they experienced leakage, constipation, and fecal odor. The children might have some psychosocial difficulties, according to parents, but not according to their teachers. Parents of children with imperforate anus experienced less satisfaction with medical care and reported that the support received had been insufficient. The mothers of children with imperforate anus seemed to be the main caregivers. Talking to your child about medical treatment at an early age seems to relate positively to the child s psychosocial function. The conclusions of this thesis may lead to an improved understanding of the care for the children with imperforate anus and their parents.