Laakkonen Hanne, Taskinen Sara, Rönnholm Kai, Holmberg Christer, Sandberg Seija
Department of Pediatric Nephrology and Transplantation, Children's' Hospital, Helsinki University Central Hospital, Helsinki, Finland,
Pediatr Nephrol. 2014 Feb;29(2):289-95. doi: 10.1007/s00467-013-2618-1. Epub 2013 Sep 11.
End-stage renal disease (ESRD) leads to the need for dialysis and renal transplantation (Tx). Peritoneal dialysis (PD) of young children is normally performed at home by the parents and affects the whole family. We studied the coping of families with a young child with ESRD by interviewing the parents of 19 children.
The spousal and parent-child relationships were assessed by using the Psychosocial Assessment of Childhood Experiences (PACE) and the Brief Measure of Expressed Emotion, respectively. A control group of 22 families with a healthy child was used for the parent-child relationship evaluation.
The spousal relationship at the start of PD was good or fairly good in most of the families and remained good in half of the families following renal Tx. Lack of support from close relatives and renal Tx were associated with a poorer relationship quality. Almost all parents expressed much or fairly much emotional warmth towards the child throughout the study, but there was a trend towards increased criticism over time. No differences in the degree of expressed warmth or criticism were noted between the index parents and controls.
Overall, the study families appeared to cope well despite the serious illness of their child and the demands of the treatments.
终末期肾病（ESRD）导致需要进行透析和肾移植（Tx）。幼儿的腹膜透析（PD）通常由父母在家中进行，这会影响整个家庭。我们通过采访19名儿童的父母，研究了患有ESRD的幼儿家庭的应对情况。
分别使用儿童经历的心理社会评估（PACE）和表达性情绪简短量表评估配偶关系和亲子关系。使用22个有健康孩子的家庭组成的对照组进行亲子关系评估。
在大多数家庭中，PD开始时的配偶关系良好或相当好，肾移植后一半的家庭中配偶关系仍保持良好。近亲缺乏支持和肾移植与较差的关系质量相关。在整个研究过程中，几乎所有父母都对孩子表达了很多或相当多的情感温暖，但随着时间的推移，批评有增加的趋势。在指标父母和对照组之间，表达的温暖或批评程度没有差异。
总体而言，尽管孩子患有重病且治疗需求大，但研究中的家庭似乎应对良好。
