Ojmyr-Joelsson Maria, Nisell Margret, Frenckner Björn, Rydelius Per-Anders, Christensson Kyllike
Astrid Lindgren Children's Hospital, Department of Woman and Child Health, Karolinska Institutet, Stockholm, Sweden.
Clin Nurs Res. 2006 Nov;15(4):290-305. doi: 10.1177/1054773806291856.
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.
在本研究中，对患有高位和中位肛门闭锁患儿的家长的护理体验进行了评估。一组45名患有高位和中位肛门闭锁患儿的家长以及两个对照组参与了研究。通过个人问卷收集了有关患儿住院护理、向家长和患儿提供的信息以及家长参与患儿护理的相关数据。与对照组相比，肛门闭锁患儿的家长对其孩子的护理满意度较低，对孩子治疗信息的满意度也较低。家长们深度参与了后续治疗。便秘和大便失禁很常见，给患儿及其家长带来痛苦。家长必须积极主动并给予支持，要有极大的耐心才能忍受照料这些孩子，而医护人员似乎低估了他们面临的问题。
