‘Everything Has Changed; It Is Not the Same as Before’: Experiences of Caregivers of Children Receiving Tube Feeding regarding Dysphagia‐ A Qualitative Study

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. WHAT THIS PAPER ADDS: What is already known on this subject 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. What this study adds to existing knowledge This study explored the experiences of caregivers of children receiving tube feeding support regarding dysphagia management. These experiences touched upon many important and different points such as recognizing dysphagia, the process of accepting dysphagia, the steps of swallowing rehabilitation, changes in family, social and work life during the caregiving process. What are the potential or actual clinical implications of this work? It is important to take steps such as expanding family training on dysphagia and tube feeding support, developing caregiver support systems, and facilitating access to rehabilitation. KEY POINTS: Caregivers experience deficiencies in receiving counselling and training on swallowing rehabilitation. Health professionals should take an active role in dysphagia management. Economic challenges, prejudice, and social pressure-combine to form a complex series of issues that can severely restrict mothers' capacity to give the best care possible.