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

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

Inclusion Criteria:

* 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.

Exclusion Criteria:

* 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.

Conditions4

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