Children with high and intermediate imperforate anus : Aspects of care and psychosocial effects of the malformation

Sammanfattning: The overall aim of this thesis was to investigate the experiences of children with high and intermediate imperforate anus and of their parents; how they have experienced care and treatment and what consequences the malformation involve for them. 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. Paper II and III 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 to each other in age and gender distributions, along with their parents, served as controls. Methods: In Paper I the interviews were conducted at the hospital. The interview guide consisted of open-ended and structured questions, and the sessions covered many different aspects of the child s malformation, as well as treatment and psychosocial consequences of the defect. In Papers II and III the instruments used to gather data were questionnaires developed on the basis of the previous interview study. The children s questionnaire consisted of 45 items divided into psychosocial domains and one physical domain. The parent s questionnaire consisted of 59 items covering various domains such as the child s hospital care, questions about psychosocial issues concerning both the child and the parent and finally the child s physical functioning associated with the malformation. Child Behavior Checklist was filled in by the parents. Teachers Report Form was filled in by the children s teachers. Results: In the analysis of the interviews four categories related to effects of the malformation emerged: 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. They reported that they enjoyed school, had good relationships with schoolmates, had several friends, and participated in leisure activities. Constipation occurred more frequently than in control groups. Answers from parents of children with imperforate anus indicated lower values on variables concerning care, information, and involvement in the child s healthcare treatment, compared with the two control groups. No significant differences on these issues were found between the answers of the mothers and fathers of children with imperforate anus. In the CBCL, the children in the index group were assessed to have significantly more emotional/behavioral problems than the children in control groups. In the TRF, the teachers reported few symptoms for the index group children. 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 impairment, 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 the support received had been insufficient. An open communication and an interaction between healthcare professionals are important. Psychosocial support for children with imperforate anus and their parents has been limited in our clinic earlier, and a liaison between the pediatric surgery unit and the child and adolescent psychiatry unit would be desirable.