RecruitingNCT07348926

The Relationship Between Functional Independence and Family Well-being in Children With Rare Genetic Disorders

Examination of Families' Psychological Status and Quality of Life According to the Functional Independence Status of Children With Rare Genetic Diseases in Early Childhood

Sponsor

Bahçeşehir University

Enrollment

45 participants

Start Date

Oct 25, 2025

Study Type

OBSERVATIONAL

Conditions

Quality of Life Rare Genetic Disorders Functional Impairment

Summary

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.

Eligibility

Min Age: 18 YearsMax Age: 65 Years

Plain Language Summary

Simplified for easier understanding

This observational study (not testing a new treatment) is investigating the relationship between how independently a child with a rare genetic disorder can function and the overall well-being of their family. Researchers want to understand how a child's daily functional abilities relate to family stress and quality of life. **You may be eligible if...** - You are a caregiver (e.g., parent) of a child aged 0–4 years who has been diagnosed with a rare genetic disorder - The child has been receiving physiotherapy for at least 6 months - You can read and understand Turkish to complete the questionnaires - You voluntarily agree to participate **You may NOT be eligible if...** - You have cognitive or language difficulties that prevent you from completing the questionnaires - You decline to participate or submit incomplete forms - The child or caregiver has an additional medical or neurological condition that prevents study participation Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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