Caregivers of Children With Repaired Esophageal Atresia-tracheoesophageal Fistula

Study Overview
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Brief Summary
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Children with esophageal atresia and tracheoesophageal fistula (EA-TEF) may experience feeding and swallowing difficulties, which result in stressful interactions between children and caregivers, and potentially impact the concerns of caregivers. The aim of this study was to assess concerns of caregivers of children with EA-TEF related to feeding-swallowing difficulties.

Detailed Description
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Children with repaired esophageal atresia-tracheoesophageal fistula (EA-TEF) experience some degrees of feeding and swallowing difficulties Feeding and swallowing difficulties cause aspiration-induced recurrent pneumonia, malnutrition, dehydration and stressful interactions with their caregivers. There is lack of knowledge regarding the concerns of caregivers of children with EA-TEF related to feeding and swallowing disorders.Therefore, the aim of this study was to assess concerns of caregivers of children with EA-TEF related to feeding-swallowing difficulties.

Official Title
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Concerns of Caregivers of Children With Repaired Esophageal Atresia-tracheoesophageal Fistula

Conditions
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Dysphagia, Quality of Life

Intervention / Treatment
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* Other: Quality of life assessment


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Having a child with EA-TEF Having a child with swallowing disorders aged between 6 months-18 years Exclusion Criteria: Having a child without swallowing disorders

Ages Eligible for Study
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Minimum Age: 20 Years
Maximum Age: 50 Years

Sexes Eligible for Study
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All

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Caregivers of children with EA-TEF<br>Caregivers of children with esophageal atresia and tracheoesophageal fistula will be included in the study. | Other: Quality of life assessment<br>* The Turkish Feeding/Swallowing Impact Survey will be completed by the caregivers<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| The Turkish Feeding/Swallowing Impact Survey | The Turkish Feeding/Swallowing Impact Survey (T-FS-IS) is used to describe the quality of life related to activities of daily living, worry and feeding difficulty of caregivers of children. It has 18 questions. Daily activities indicate caregivers' perceptions of time demands on daily activities. Worry is the worry of the caregivers about the children's well-being. Feeding difficulty is related to the challenges during delivery of care specific to feeding/swallowing. Each question of the instrument will be answered on a 5-point Likert scale between 1 to 5. A score of '1' indicates never, and a score of '5' indicates almost always. All scores from 18 questions in the T-FS-IS will be summed, and then divided by 18 to calculate an average total score. Scores within each subscale will also be added together, and then divided by the total number of questions in the subscale to calculate an average subscale score. Higher scores from the instrument represent decreased quality of life. | 1 month |