Survey of Lifestyle and Its Feelings in Families of Patients in Home Parenteral Nutrition
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 104
- 试验地点
- 1
- 主要终点
- Demographic data and socio-familial life style with a child on long-term
研究概览
简要总结
Description of the life style of patients and families during the course of long term HPN.
- Evaluation of the familial impact of HPN, and the way it is perceived
- Evaluation of the satisfaction regarding the management by the multi-professional team (Medical, nursing, home care company and logistic, social, psychologist etc..) for improving the global management of these challenging patients
- Analysis of the factors related to specific distress and the protective factors
详细描述
Gastrointestinal diseases may cause intestinal failure (IF) requiring long term parenteral nutrition (PN) which is, most of the time, performed at home (HPN).
However such conditions represent a great burden for the parents and the family.
The birth of a child with such disease changes the life of the entire family including life style, leisures, social relationships and professional activities.
These condition obligate to change the personal and familial organization according to the course of the disease. The PN treatment which was seen as life saving when first started might become a burden altogether physically and psychologically for the child and his/her family.
The Necker-Enfants Malades hospital developed home PN in the early eighties as an alternative to very long hospitalizations.
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
- 18 Months 至 23 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Patients followed up by the Necker HPN expert center
- •HPN ≥ 12 months
- •HPN between 2004 and 2020
- •Parents reading and writing French language
排除标准
- •Refusal of the parents to participate to the survey
结局指标
主要结局
Demographic data and socio-familial life style with a child on long-term
时间窗: Base line
socio-familial life style
Data involving the management of HPN
时间窗: Base line
Logistics organization
次要结局
- Perception of the familial impact of HPN on life style in case of protracted HPN dependency(Base line)
- Satisfaction level of the management by the HPN expert center(Base Line)
- Factors influencing the familial burden(Base Line)