CTRI/2024/06/068279尚未招募不适用
A Phenomenological study to explore the lived in experiences, challenges and coping strategies faced by parents of children wiith Mucoploysaccharidiosis(MPS).
Neha Jakhar1 个研究点 分布在 1 个国家目标入组 30 人开始时间: 2024年8月1日最近更新:
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 发起方
- 入组人数
- 30
- 试验地点
- 1
- 主要终点
- 1 To understand and interpret parents experience of living and caring for a children with MPS.
研究概览
简要总结
A phenomnological study to explore the lived in experiences challenges and coping stratergies faced by parents of children with mucopolysacchridosis the need of the study arrises because mucopolysacchridosis is a very rare inherited metabolic disorder which has profound effect on the lives of the family and the children
研究设计
- 研究类型
- Observational
入排标准
- 年龄范围
- 2.00 Year(s) 至 14.00 Year(s)（—）
- 性别
- All
入选标准
- •Either Mother or Father of children age between 2 to 14 yrs diagnosed with Mucopolysaccharidosis stage I II IV VI VII IX Those who are able to communicate through english or hindi.
排除标准
- •Not able to participate those with type III disease.
结局指标
主要结局
1 To understand and interpret parents experience of living and caring for a children with MPS.
时间窗: During study
2 To explore the challenges faced by parents of children with MPS.
时间窗: During study
次要结局
- Coping strategies faced by parents(During study)
研究者
Neha Jakhar
All india institute of medical sciences Delhi
研究点 (1)
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