NCT04492761Unknown不适用
Family Impact of Polyhandicap: Mixed Methodological Approach
适应症
试验速览
- 阶段
- 不适用
- 入组人数
- 260
- 试验地点
- 1
- 主要终点
- Qualite of life
研究概览
简要总结
Polyhandicap (PLH) is a complex disability condition corresponding to a chronic affliction occurring in an immature brain, leading to the combination of profound mental retardation and serious motor deficit, resulting in an extreme restriction of autonomy and communication. In a preliminary work, we demonstrated that French families reporteda deterioration of the quality of life. This first study, based on a cross-sectional study and quantitative methods, did not allow to explore: 1) the dynamic aspect and the evolution over time of this experience, 2) the mechanisms underlying the difficulties encountered, the needs and expectations of families
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 8 Years 至 35 Years(Child, Adult)
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Familial caregivers: member of a family of a polyhandicapped person aged from 8 to 35 years old
- •Patients: with severe polyhandicap defined by the combination of motor deficiency and intellectual impairment associated with everyday life dependence, restricted mobility and age at onset of cerebral lesion below 3 years old
- •Written consent signed by caregivers for participation
排除标准
- •caregivers refusing to participate
结局指标
主要结局
Qualite of life
时间窗: 5 years
WHOQOL-Bref
次要结局
- interview content(2 hours)
研究者
研究点 (1)
Loading locations...
相似试验
已完成
不适用
"Family-centered" Pediatric Rehabilitation Services in Children With Developmental DisabilitiesDevelopmental DisabilitiesAutistic Spectrum DisorderNCT02057809Chang Gung University130
进行中(未招募)
不适用
Family Health Partners in Regional Network StructuresDisabled or Chronically Ill Children in Need of CareNCT05418205Universitätsklinikum Hamburg-Eppendorf204
已完成
不适用
Impact of an Intensive Multimodal Educative Program on Behavioral Disorders of Patients With Profound Multiple Disabilities and on the Quality of Life and Feelings of CaregiversPolyhandicapBehavior DisordersNCT02510846Assistance Publique - Hôpitaux de Paris63
招募中
不适用
Effectiveness of care offered to multiproblem familiesMultiproblem, psychosocial problems, parenting problems, socio-economic problems, treatment effectivenessNL-OMON20954niversity Medical Center Groningen (UMCG), Department of Health Sciences200
已完成
不适用
Family Adaptation Study Following the Diagnosis of Hypoplastic Left Heart Syndrome in a NewbornHypoplastic Left Heart SyndromeNCT00734643Medical College of Wisconsin213
