Psychosocial Situation of Children With Rare (Congenital) Pediatric Surgical Diseases and Their Families
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 167
- 试验地点
- 1
- 主要终点
- Quality of life of the parents (ULQIE)
研究概览
简要总结
Families of children with rare diseases (i.e., not more than 5 out of 10.000 people are affected) are often highly burdened with fears, insecurities and concerns regarding the affected child and his/her siblings. The aim of the present research project is to examine the psychosocial burden of the children with rare (congenital) pediatric surgical diseases and their family in order to draw attention to a possible psychosocial care gap in this population.
详细描述
The central objective of the cross-sectional study is to show the psychosocial supply gap for families with children and adolescents affected by rare diseases in the field of pediatric surgery. Among the rare diseases that are included are diaphragmatic hernia, anorectal malformations, esophageal atresia, Hirschsprung's disease and biliary atresia. In order to have a comparative sample, additional data of a matched control group are collected. Central standardized psychosocial outcomes will be assessed from the perspectives of the parents, the affected child and the siblings.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Cross Sectional
入排标准
- 年龄范围
- 1 Day 至 21 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- 未提供
排除标准
- 未提供
结局指标
主要结局
Quality of life of the parents (ULQIE)
时间窗: 4 minutes
Quality of life (QoL) of the parents, assessed from the perspective of the parents by the "Ulmer Lebensqualitätsinventar für Eltern chronisch kranker Kinder" (ULQIE; Goldbeck \& Storck, 2002). The instrument consists of 29 items, which are answered on a five-point Likert scale (0 to 4). Higher scores indicate greater QoL.
Health-related quality of life of the chronically-ill children/adolescents (Peds-QL 4.0)
时间窗: 4 minutes
Health-related quality of life of the chronically-ill children/adolescents, assessed from the perspective of the child/adolescent (from 10 years of age) and from the perspective of the parents by the "Pediatric Quality of Life Inventory 4.0" (Peds-QL 4.0; (Varni, Seid, \& Kurtin, 2001). Items will be linearly transformed to a scale of 0 to 100, with higher scores indicating better HRQoL.
Psychiatric disorders of the chronically-ill children/adolescents and the siblings (SDQ)
时间窗: 4 minutes
Psychiatric disorders of the chronically-ill children/adolescents and the siblings assessed perspective of the child/adolescent (from 10 years of age) and from the perspective of the parents by the "Strengths and Difficulties Questionnaire" (SDQ; Klasen, Woerner, Rothenberger, \& Goodman, 2003). Items are rated on a three-point Likert scale (0 to 2). Higher scores represent greater psychopathology or greater prosocial behavior.
Mental health of the parents (BSI)
时间窗: 5 minutes
Mental health of the parents, assessed from the perspective of the parents by the "Brief Symptom Inventory" (BSI; Franke, 2000). The instrument consists of 53 items, which are answered on a five-point Likert scale (0 to 4). Higher BSI scores indicate greater psychological distress.
次要结局
- Familial predispositions (FaBel)(3 minutes)
- Interpersonal problems (IIP-32)(3 minutes)
- Coping of the chronically-ill children/adolescents and the siblings (Kidcope)(3 minutes)
- Coping of the parents (CHIP-D)(3 minutes)
- Social support of the parents, of the chronically-ill children/adolescents and of the siblings (OSSS)(3 minutes)
- Sociodemographic information of the parents(2 minutes)
- Relationships between siblings (SRQ)(3 minutes)
- Family relationships, family dynamics and functionality (FB-A)(3 minutes)
研究者
Johannes Boettcher
Principial investigator
Universitätsklinikum Hamburg-Eppendorf