The Relationship Between Functional Independence and Family Well-being in Children With Rare Genetic Disorders
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age18-65
SponsorBahçeşehir University
About this trial
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 criteria
This trial accepts healthy volunteersQualifiers
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.
Disqualifiers
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.
Trial population
The study population consists of caregivers of children aged 0-4 years who have been diagnosed with rare genetic disorders and receive physiotherapy services at a rehabilitation center in Istanbul, Turkey. Participants are primary caregivers responsible for the child's daily care and able to complete Turkish-language questionnaires. The population reflects a clinical sample receiving ongoing rehabilitation, rather than a community-based or general population sample
Trial design
Design model
Other
Time perspective
Prospective
Treatments tested in this trial
Not listed
Trial groups
45 Participants
are grouped into 2 trial groupsGroup A: Lower Functional Independence
Group B: Higher Functional Independence
Trial outcomes
Primary outcomes
1
Functional Independence Level of the Child (WeeFIM)
The functional independence level of children with rare genetic disorders will be assessed using the Pediatric Functional Independence Measure (WeeFIM). This scale evaluates functional abilities in self-care, mobility, and cognition. Higher scores indicate greater functional independence.
Time frame
At baseline (study enrollment)Secondary outcomes
1
Beck Depression Inventory (BDI)
Caregiver depressive symptoms will be assessed using the Beck Depression Inventory (BDI). This scale measures emotional, cognitive, and physical symptoms of depression. Higher scores indicate higher levels of depressive symptoms.eck Depression Inventory (BDI), higher scores indicate greater severity of depressive symptoms.
Time frame
At baseline (study enrollment)2
Family Functionality in Rehabilitation
This outcome will assess the caregiver's perceived role and functionality in the child's rehabilitation process using the Family Functionality in Rehabilitation Scale. Higher scores indicate better family functioning within the rehabilitation setting.
Time frame
At baseline (study enrollment)3
Family Impact (Family Impact Scale)
The Family Impact Scale will be used to evaluate how the child's rare genetic condition affects family routines, emotional well-being, and daily functioning. Higher scores indicate greater perceived impact on family life.
Time frame
At baseline (study enrollment)4
Sleep Quality (Pittsburgh Sleep Quality Index - PSQI)
Caregiver sleep quality will be measured using the Pittsburgh Sleep Quality Index (PSQI), which evaluates sleep duration, latency, disturbances, and overall sleep quality. Higher scores reflect poorer sleep quality.
Time frame
At baseline (study enrollment)Sponsors and contacts
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Source ClinicalTrials.gov