Tüple beslenme desteği alan çocuklara bakım verenlerin yutma bozukluğu yönetimine ilişkin deneyimleri

Abstract

Erdoğmuş, H. Experiences of caregivers of children receiving tube feeding support regarding dysphagia management, Hacettepe University graduate school of Health Sciences Neurology Physiotheraphy Master's Degree Program, Master's Thesis, Ankara, 2022. This study was aimed to determine the experiences of caregivers of children receiving tube feeding support regarding dysphagia management. It was carried out with a qualitative research design. The study included 15 caregivers over the age of 18 years who had a child receiving tube feeding support due to dysphagia, had no communication disability and mental problems. The sample size was determined by data saturation. Data were collected using in-depth interview method via online interview platforms. A semi-structured interview form was used in the interviews, and recorded to create transcripts. Content analysis method was used in data analysis. Five categories emerged as “Meeting with Swallowing Disorder”, “Living with Swallowing Disorder”, “Swallowing Rehabilitation”, “Being a Caregiver” and “Effects of Covid-19 Pandemic” as a result of content analysis. A total of 18 themes and 75 sub-themes were determined under these categories. Caregivers mentioned several important points, including recognition and management of swallowing disorders, changes in family, social and work life during the caregiving process, and support and barriers related to the process. It was revealed that caregivers are at the center of dysphagia management and should be involved in every step according to this study. The results of our study are very important in terms of increasing the care standards for children receiving tube feeding support, identifying shortcomings and arranging new regulations to improve dysphagia management. In conclusion, it can be recommended to expand family trainings for dysphagia and tube feeding support, develop caregiver support systems, facilitate access to health systems in difficult conditions, and increase the awareness and knowledge level of specialists through in-service trainings.

Keywords: swallowing, dysphagia, tube feeding, child, caregiver