Home enteral tube feeding  - from patients’, relatives’ and nurses’ perspectives

Abstract: Changes in the health-care system during the past decades have led to an increased transfer of health care to the home environment which also concerns patients treated with home enteral tube feeding (HETF). Research is scarce about how HETF care is functioning. Therefore, the overall aim with this thesis was to describe and explore HETF care and treatment from patients', relatives' and nurses' perspectives. Three qualitative and one quantitative study were used. The findings showed that the HETF treatment and care had a great impact on daily life for both patients and their relatives and implied many practical, emotional and social problems in their daily life, which they strived to manage. Side effects were common and the patients' reported low HRQL and general health. The amount and quality of received guidance and support from the health care, not least before discharge, turned out to have impact on the patients' and the relatives' daily life and how they could manage their situation. Lack of guidance and support meant insecurity, worries and distress. Cooperation in the care trajectory was found to be decisive for how well the care was running. Nurses' knowledge about tube feeding and discharge planning procedures, their commitment to the patients' care, as well as clarity regarding responsibility of HETF care were factors of crucial importance on how the cooperation worked, and the quality of the HETF care. This thesis shows the need of improvements regarding the care of HETF patients and their relatives.