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'Everything Has Changed; It Is Not the Same as Before': Experiences of Caregivers of Children Receiving Tube Feeding Regarding Dysphagia -- A Qualitative Study

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Title: 'Everything Has Changed; It Is Not the Same as Before': Experiences of Caregivers of Children Receiving Tube Feeding Regarding Dysphagia -- A Qualitative Study
Language: English
Authors: Hamide Erdoğmuş-Buldağ, Rana Elçin Sezer (ORCID 0000-0001-8579-4660), Selen Serel-Arslan (ORCID 0000-0002-2463-7503)
Source: International Journal of Language & Communication Disorders. 2026 61(2).
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 10
Publication Date: 2026
Document Type: Journal Articles
Reports - Research
Descriptors: Nutrition, Physical Disabilities, Eating Disorders, Children, Caregivers, Motor Reactions, Rehabilitation, Child Rearing, Parent Role, Caregiver Role
DOI: 10.1111/1460-6984.70213
ISSN: 1368-2822
1460-6984
Abstract: Background: Tube feeding can be used to maintain safe and effective nutrition due to dysphagia. In the presence of dysphagia and related tube feeding in children, caregivers may be affected psychosocially, economically and/or socio-culturally. The aim of this study is to explore the experiences of caregivers of children receiving tube-feeding support regarding dysphagia management. Aim: A descriptive phenomenological study was conducted between March 2021 and September 2022. Data were collected by conducting in-depth individual online interviews using semi-structured interview form. The study included 15 caregivers who had children receiving tube feeding support due to dysphagia. Colaizzi's descriptive phenomenological data analysis method was used. Results: Three themes emerged as navigating a diagnosis of dysphagia, swallowing rehabilitation is now a part of us, parenting a child with dysphagia. There were eight sub-themes under these themes. Conclusion: This study has shown that caregivers play a pivotal role in the management of dysphagia, from the early recognition of symptoms to coping with the challenges encountered throughout the care process. Based on these findings, there is a clear need for further research on the development and implementation of educational programs to enhance caregivers' awareness and knowledge of the causes, risks and potential complications of swallowing difficulties. Such initiatives are expected to contribute to improved quality of care and to the reduction of adverse outcomes associated with dysphagia.
Abstractor: As Provided
Entry Date: 2026
Accession Number: EJ1500768
Database: ERIC
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  Data: 'Everything Has Changed; It Is Not the Same as Before': Experiences of Caregivers of Children Receiving Tube Feeding Regarding Dysphagia -- A Qualitative Study
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  Data: <searchLink fieldCode="AR" term="%22Hamide+Erdoğmuş-Buldağ%22">Hamide Erdoğmuş-Buldağ</searchLink><br /><searchLink fieldCode="AR" term="%22Rana+Elçin+Sezer%22">Rana Elçin Sezer</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-8579-4660">0000-0001-8579-4660</externalLink>)<br /><searchLink fieldCode="AR" term="%22Selen+Serel-Arslan%22">Selen Serel-Arslan</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-2463-7503">0000-0002-2463-7503</externalLink>)
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  Data: <searchLink fieldCode="SO" term="%22International+Journal+of+Language+%26+Communication+Disorders%22"><i>International Journal of Language & Communication Disorders</i></searchLink>. 2026 61(2).
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  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
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  Data: Background: Tube feeding can be used to maintain safe and effective nutrition due to dysphagia. In the presence of dysphagia and related tube feeding in children, caregivers may be affected psychosocially, economically and/or socio-culturally. The aim of this study is to explore the experiences of caregivers of children receiving tube-feeding support regarding dysphagia management. Aim: A descriptive phenomenological study was conducted between March 2021 and September 2022. Data were collected by conducting in-depth individual online interviews using semi-structured interview form. The study included 15 caregivers who had children receiving tube feeding support due to dysphagia. Colaizzi's descriptive phenomenological data analysis method was used. Results: Three themes emerged as navigating a diagnosis of dysphagia, swallowing rehabilitation is now a part of us, parenting a child with dysphagia. There were eight sub-themes under these themes. Conclusion: This study has shown that caregivers play a pivotal role in the management of dysphagia, from the early recognition of symptoms to coping with the challenges encountered throughout the care process. Based on these findings, there is a clear need for further research on the development and implementation of educational programs to enhance caregivers' awareness and knowledge of the causes, risks and potential complications of swallowing difficulties. Such initiatives are expected to contribute to improved quality of care and to the reduction of adverse outcomes associated with dysphagia.
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