Addressing Unmet Family Needs of Children with Cerebral Palsy for Family Centered Care
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 发起方
- 入组人数
- 55
- 试验地点
- 2
- 主要终点
- Frequency of Unmet Family Needs from Domains of Family Centered Care
研究概览
简要总结
Primary Research Question : What can be done to effectively deliver family centered care addressing the unmet Family needs in caregivers of children with cerebral palsy? Do we have an India Specific assessment for the same?
Aims:
Phase 1: Aim: To identify unmet family needs of children with cerebral palsy from domains of family centered care using focus group discussions
Phase 2: Aim: To draft, validate and translate an India Specific Family Needs Questionnaire assessing unmet needs from domains of family centered care. (Using information received from focus group discussions, review of literature and expert opinion)
Phase 3: Aim: To design, implement and assess a service delivery targeted to addressing the unmet needs of families of children with cerebral palsy from domains of family centered care
Methodology:
Phase 1: Qualitative Cross sectional - Focus group discussions until Data Saturation, Thematic Analysis to identify themes for needs of families of children with cerebral palsy from domains of family centered care.
Phase 2: Qualitative Cross Sectional- Item and Domain Generation, Analysis, Item Formatting from data of Focus Group Discussions, Review of Literature and Expert opinion- Drafting of Questionnaire , Validation through Delphi Process; Translation using Beaton Guidelines.
Phase 3 : Cross Sectional: Identifying Unmet Family Needs in Objective Manner using Questionnaire, Designing a service delivery addressing the unmet needs from domains of family centered care in families of children with cerebral palsy, implementing the service delivery and assessing its efficacy by re administering the questionnaire. ( E.G The Service delivery could include addressing needs for information, needs for caregiver support through support groups, need for communication, need for co-ordinated care etc)
研究设计
- 研究类型
- Observational
入排标准
- 年龄范围
- 18.00 Year(s) 至 55.00 Year(s)（—）
- 性别
- All
入选标准
- •Parents/caregiver(Aged more than 18 years) of children with cerebral palsy (aged from 0 to 21 years).
排除标准
- •Caregivers of Cerebral Palsy children having other severe comorbidities affecting Quality of Life such as Cystic Fibrosis, Malignancies, Autism Spectrum disorder, Caregiver or immediate family of child having a disease affecting the family needs or quality of life, Non use of rehabilitation services in the past 1 year.
结局指标
主要结局
Frequency of Unmet Family Needs from Domains of Family Centered Care
时间窗: Baseline
次要结局
- Frequency of Unmet Family Needs from Domains of Family Centered Care(6 months after Baseline)
研究者
Priya Chitre
MAEERs Physiotherapy College