Struggling in an inescapable life situation: being a close relative of a person dependent on home enteral tube feeding

Abstract

To explore what it means to be a close relative of a person dependent on home enteral tube feeding (HETF) and how they can manage this situation. Previous studies have shown that the situation of close relatives in home care in general can be burdensome and difficult. Research is scarce about experiences of close relatives when patients are treated with HETF. A qualitative design was used, in accordance with grounded theory (GT). Twelve close relatives were interviewed twice, using open-ended questions. Five were relatives of patients supported by home care services or advanced home care teams. Using the GT method, sampling, data collection and data analysis were carried out simultaneously. One core category, 'Struggling in an inescapable life situation' and eight categories were found. The situation led to involuntary changes in the lives of the close relatives, something they could do little about. Their lives had become completely upturned and restricted by the HETF. Togetherness and pleasure was lost and they felt lonely. The relatives faced a new role of being informal caregivers and they had to adjust their daily life accordingly. They felt forced to take on a heavy responsibility for which they lacked support. The close relatives struggled to manage and to make the best of their new situation. This study highlighted the demands and vulnerability which is embedded in the role of being a close relative of a patient with HETF. It also pointed out their need for comprehensive support from the health care system. Support to facilitate the situation of close relatives should be given from the health care. One way to organise the care could be through a nurse-led clinic, which provides continuous support, information and counseling.