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.

Experiences and needs of home caregivers for enteral nutrition: A systematic review of qualitative research

“…Ten studies were selected for a systematic review, including three from the United Kingdom and one from the United States, Singapore, South Africa, Israel, Italy, Canada and Swede. In these studies, the number of caregivers involved ranged from 4 to 30, a total of 158 caregivers (Alsaeed et al, 2018; Ang et al, 2019; Asiedu et al, 2018; Bjuresäter et al, 2012; Gil et al, 2018; Green et al, 2019; Green et al, 2019; Jukic et al, 2017; Mooi and Ncama, 2020; Penner et al, 2012). Qualitative research methods were used in all the studies, including structured or semi‐structured interviews.…”

“…As one participant put it, "The staff doesn't want him (the patient) to stutter anything… Eventually, a compromise was reached where he was allowed to eat only a thickened liquid to ensure his quality of life, and he ate as much as he could, eating five 125 ml servings of muddy food a day." (Green et al, 2019). In addition, caregivers who have religious beliefs saw enteral nutrition as a gift from God that kept their families alive (Gil et al, 2018).…”

“…I would flush the tube again after I finished eating." (Green et al, 2019). It started out messy, but over time, the caregiver could drop the list and move on (Asiedu et al, 2018; Green et al, 2019).…”

The Hidden Burden of Community Enteral Feeding on the Emergency Department

“…This is almost certainly too simplistic, and qualitative studies show that patients and families face a range of challenges and emotions adapting to and living with a feeding tube and with the associated condition necessitating its insertion. [13][14][15] The cost of failing to prevent or deal with these complications in the community can be financial, as demonstrated here, but is manifested in bed days, procedural costs, and patient morbidity. In a resource-restricted environment, these hidden costs represent an unmeasured impact.…”

“…The European PEG guidelines 12 describe late complications as being potentially avoidable and exclusively dependent on the quality of tube management and aftercare. This is almost certainly too simplistic, and qualitative studies show that patients and families face a range of challenges and emotions adapting to and living with a feeding tube and with the associated condition necessitating its insertion 13–15 …”