The Relationship Between Functional Independence and Family Well-being in Children With Rare Genetic Disorders
NCT ID: NCT07348926
Last Updated: 2026-01-16
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
45 participants
OBSERVATIONAL
2025-10-25
2026-03-15
Brief Summary
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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.
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Detailed Description
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The study population consists of caregivers of children aged 0-4 years with rare genetic diagnoses who are receiving physiotherapy at a rehabilitation center in Istanbul. A sample size of 45 participants was calculated based on Cohen's effect size approach, assuming a medium effect size (d = 0.5).
Functional independence of the child will be assessed using the Pediatric Functional Independence Measure (WeeFIM). Based on WeeFIM scores, parents will be categorized into two groups according to the child's functional level. Caregiver depression levels will be assessed using the Beck Depression Inventory; family functioning will be evaluated with the Family Functionality in Rehabilitation Scale; family impact will be measured with the Family Impact Scale; sleep quality will be evaluated using the Pittsburgh Sleep Quality Index; and quality of life will be assessed using the Nottingham Health Profile. Demographic information and details of physiotherapy participation will also be collected.
Data collection will begin after ethical approval and will last approximately three months. Following informed consent, all participants will complete the questionnaires in Turkish. The findings of this study are expected to provide a comprehensive understanding of the multidimensional challenges faced by families of children with rare genetic disorders and may guide the development of family-centered physiotherapy, psychosocial interventions, and supportive care programs.
Conditions
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Study Design
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OTHER
PROSPECTIVE
Study Groups
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Lower Functional Independence
Children with rare genetic disorders whose functional independence level is lower based on the Pediatric Functional Independence Measure (WeeFIM). Caregivers of these children are included in the study.
No interventions assigned to this group
Higher Functional Independence
Children with rare genetic disorders whose functional independence level is higher based on the Pediatric Functional Independence Measure (WeeFIM). Caregivers of these children are included in the study.
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
* 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.
Exclusion Criteria
* 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.
18 Years
65 Years
ALL
Yes
Sponsors
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Bahçeşehir University
OTHER
Responsible Party
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Yağmur Erkan
Graduate Student Researcher
Principal Investigators
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Tuğçe Tahmaz, PhD
Role: PRINCIPAL_INVESTIGATOR
Bahçeşehir University
Locations
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Bahcesehir University
Istanbul, , Turkey (Türkiye)
Countries
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Central Contacts
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Facility Contacts
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Yağmur Erkan, PT
Role: primary
Other Identifiers
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BAU-FTR-YE-01
Identifier Type: -
Identifier Source: org_study_id
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