People with enteral tubes and their carers' views of living with a tube and managing associated problems: A qualitative interview study

Abstract

Background: Nutrition by enteral tube is a complex therapy requiring significant management to ensure safe, timely delivery of nutrients and avoidance of complications. In the home setting, people with enteral tubes and their carers are required to self-manage the therapy, including the need to cope with problems that arise. Whilst previous studies have conveyed experiences of people with enteral tubes, few have described views on enteral tube problems.

Aims and objectives: Drawing on the findings of a previously reported study (Journal of Human Nutrition and Dietetics, 2019), this paper aims to describe in-depth the experiences of people with enteral tubes and their carers of living with the tube day to day and managing problems that arise.

Design: A qualitative descriptive design using semi-structured in-depth interviews was employed.

Methods: A purposive sample of 19 people with enteral tubes and 15 carers of people with tubes participated. Interviews were recorded and transcribed. Using a thematic analysis approach, codes were defined and applied; themes developed and refined. Five themes with associated subthemes were generated, of which one, "living with the tube," is reported in-depth. The COREQ checklist was used.

Results: Participants described the tube affecting both physical and psychosocial being and revealed it had resulted in significant changes to their daily living, necessitating adaptation to a new way of life. Participants reported spending much time and effort to manage tube problems, at times without support from healthcare practitioners knowledgeable in tube management. Discomfort associated with the tube was commonly described.

Conclusions: Living with an enteral tube impacts significantly on daily life requiring adaptations to normal routine. People with tubes and their carers use a range of strategies to manage common complications.

Relevance to clinical practice: Knowledge and understanding of how people with enteral tubes live with their tube and manage issues as they arise will enable healthcare practitioners to provide better support.

Keywords: enteral nutrition; gastrostomy; home care services; nutritional support.