Experience Life, Needs and Expectations of Families of Older Polyhandiccaped Persons
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 82
- 试验地点
- 7
- 主要终点
- Experiences of parents of aging persons with polyhandicap
研究概览
简要总结
The general objective of PolyAGE is to explore the life experience of familial caregivers of aging persons with polyhandicap (>= 35 years). The investigators will question parents (objective 1) and siblings (objective 2) about the experiences, the social representations, the needs and the expectations, as well as the mechanisms associated with their choices about their children with polyhandicap. The objective 3 is to co-analyze parents' and siblings' experiences regarding the aging of their relatives with polyhandicap.
详细描述
Context Polyhandicap as a chronic complex disability condition, lead to a combination of profound intellectual disability and serious motor deficit, resulting in the extreme restriction of autonomy and communication. Due to the improvement of preventive actions and supportive care, the life expectancy of these persons is increased In order to assess the issues associated with the aging of people with polyhandicap (an emerging and underexplored phenomenon), life experiences, social representations, specific needs and expectations of familial caregivers (parents and siblings) need to be explored. It is essential to better understand these phenomenon in order to better support and assist these families. The PolyAGE project relies on an interdisciplinary approach, based on social and human sciences (social psychology of health) and public health. PolyAGE is based on a solid network including engaged and volunteer actors.
Objectives The general objective of PolyAGE is to explore the life experience of familial caregivers of aging persons with polyhandicap (>= 35 years). The investigators will question parents (objective 1) and siblings (objective 2) about the experiences, the social representations, the needs and the expectations, as well as the mechanisms associated with their choices about their children with polyhandicap. The objective 3 is to co-analyze parents' and siblings' experiences regarding the aging of their relatives with polyhandicap.
Methods
PolyAGE relies on the EVAL-PLH cohort, initiated in 2015, including persons with polyhandicap, familial and institutional caregivers. Eight teams are involved in PolyAGE: 2 specialized reeducation centers (Hendaye et San Salvadour), the J. Bost Foundation, the Groupe Polyhandicap France (family association), 3 university teams (CeReSS and LPS of Aix Marseille university and SantESiH of Montpellier university), 1 epidemiology team (AP-HM).The investigators propose a pluri-methodological mixt approach combining quantitative and qualitative approaches in a socio-contextual and comprehensive perspective:
- Quantitative approach:
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
- 35 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Mother or father (>=18 years) of a with severe polyhandicap aged 35 and over at the time of inclusion
- •Person (>=18 years) having at least one parent in common with a person with a severe polyhandicap aged 35 and over at the time of inclusion
- •Person agreeing to participate after having been informed of the study's objectives and procedures
排除标准
- •Parents and siblings whose inclusion criteria concerning the Persons with severe polyhandicap are not fulfilled
- •Parents and siblings who refuse to participate
结局指标
主要结局
Experiences of parents of aging persons with polyhandicap
时间窗: 30 minutes to fill in the booklet and about 60 minutes for the interview
Evaluations using standardized self-reported questionnaire: quality of life and evaluation based on interviews to be conducted during the present study
次要结局
- Experiences of siblings of aging persons with polyhandicap(30 minutes to fill in the booklet and about 60 minutes for the interview)
- Crossing and confrontation of quantitative and qualitative findings(2 months)