Actively Recruiting
The Relationship Between Functional Independence and Family Well-being in Children With Rare Genetic Disorders
Led by Bahçeşehir University · Updated on 2026-01-16
45
Participants Needed
1
Research Sites
20 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
This study aims to examine the psychological status and quality of life of families with children who have rare genetic disorders. The focus of the study is to understand how the child's level of functional independence relates to the well-being of the family. Functional independence will be assessed using standardized tools, and parental psychological status and quality of life will be evaluated with validated questionnaires. The information gathered from this study may help improve the understanding of how rare genetic disorders affect family dynamics and daily functioning. The results may guide health care professionals in planning family-centered physiotherapy, psychological support, and care programs.
CONDITIONS
Official Title
The Relationship Between Functional Independence and Family Well-being in Children With Rare Genetic Disorders
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Caregivers of children aged 0-4 years diagnosed with a rare genetic disorder.
- The child must have been receiving physiotherapy for at least 6 months.
- Caregivers who voluntarily agree to participate and provide informed consent.
- Caregivers who are able to read and understand Turkish to complete the questionnaires.
You will not qualify if you...
- Caregivers who have cognitive or language limitations that prevent them from completing the questionnaires.
- Caregivers who decline participation or submit incomplete questionnaire forms.
- Children or caregivers with an additional medical or neurological condition that prevents participation in the study.
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Bahcesehir University
Istanbul, Turkey (Türkiye), 34053
Actively Recruiting
Research Team
Y
Yağmur Erkan, PT
CONTACT
T
Tuğçe Tahmaz, PhD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
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