Caregivers of Children With Repaired Esophageal Atresia-tracheoesophageal Fistula

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.

Completed

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Key information

Conditions

Dysphagia Deglutition Disorders Digestive System Diseases Esophageal Diseases Gastrointestinal Diseases Otorhinolaryngologic Diseases Pharyngeal Diseases Quality of Life

Age range

20 year–50 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Hacetttepe University

Ankara, 06100, Turkey (Türkiye)

About this study

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.

Who can participate

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Quality of Life Assessment

Other

The Turkish Feeding/Swallowing Impact Survey will be completed by the caregivers

Primary outcomes

The Turkish Feeding/Swallowing Impact Survey

Time frame: 1 month

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.

Sponsors and collaborators

Lead sponsor

Hacettepe University

Other

Registry information

Official study title

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

Important dates

Study start: 2019
Primary completion: 2019
Study completion: 2019
First posted: Mar 25, 2019
Registry last updated: May 10, 2019

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed