Patients’ experiences of home enteral tube feeding (HETF) – a qualitative study

Abstract

Use of home enteral tube feeding (HETF) has increased in Western countries but research is scarce, especially about patients’ experiences of daily life when being treated with HETF. This study aimed to explore what it means to live with HETF and how the situation can be managed. A qualitative method was carried out according to Grounded Theory. In total, 22 interviews were performed with 11 patients treated with HETF for between 8 weeks and 2 years, using open-ended questions. Sampling, data collection and data analysis were carried out simultaneously. To be treated with HETF was experienced as positive as it meant survival, but the most prominent finding told about experiences of restrictions, practical problems and distress in the patients’ daily lives. How daily life turned out seemed to depend on the patient’s ability to manage problems, but was also strongly related to the amount and quality of information and support they received from health professionals. Lacking preparation before discharge as well as lacking support at home meant insecurity and uncertainty. The findings stress the need for comprehensive preparation and support from health professionals, and improvements are needed to facilitate HETF patients’ daily life.