The experiences and support needs of people living at home with an enteral tube: a qualitative interview study

Green, Sue; Townsend, Kay; Jarrett, Nikki; Fader, Mandy

doi:10.1111/jhn.12656

Cited by 12 publications

(47 citation statements)

References 37 publications

(76 reference statements)

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“…Living with an ET at home has a considerable impact on daily life, as reported in the primary publication of this study Green, Townsend, Jarrett, Fader (). This secondary publication reveals the significant time and resource (both physical and emotional) required by people with ETs and their carers to manage the tube, associated therapies and problems as they arise.…”

Section: Discussionmentioning

confidence: 64%

“…The five themes and associated subthemes derived from analysis of the transcripts are described by Green, Townsend, Jarrett and Fader () Living with the tube Home better than hospital Feelings about the tube Help when you need it Cost for NHS …”

Section: Resultsmentioning

confidence: 99%

“…A qualitative descriptive design using one to one, in‐depth interviews with people with ETs and their carers was used. The methods employed are described fully previously (Green et al ).…”

Section: Methodsmentioning

confidence: 99%

“…People who are discharged home from hospital following placement of an ET, and their carers, are required to learn to manage their ET, associated therapy and deal with issues as they arise (Boullata et al, ; NICE, ). Training received can be limited and support following discharge is variable (Green, Townsend, Jarrett and Fader ).…”

Section: Introductionmentioning

confidence: 99%

“…The findings presented in this paper are gained from a qualitative study which aimed to explore the experiences of people with ETs and their carers concerning hospital admission for ET‐related issues and their views of services that could support management of ETs at home. The primary publication addressing the primary research aim is reported in (Green et al ). The study did not aim to explore the full experience of living with a tube but the qualitative approach and the broad interview guide gave participants the flexibility to introduce issues they felt relevant and important.…”

Section: Introductionmentioning

confidence: 99%

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

Green

Townsend

Jarrett

et al. 2019

Journal of Clinical Nursing

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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.

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Section: Discussionmentioning

confidence: 64%

Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Green

Townsend

Jarrett

et al. 2019

Journal of Clinical Nursing

Self Cite

View full text Add to dashboard Cite

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

et al. 2021

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Aims To systematically identify, evaluate and synthesize the qualitative evidence on enteral nutrition of home caregivers. Design A qualitative evidence synthesis using the Sandelowski and Barroso methodology. Data Sources We reviewed articles from eight databases: CINAHL, Embase, PubMed, Web of Science, Cochrane, CNKI, Wanfang Data and CSTJ. Qualitative, peer‐reviewed, original studies published in English or Chinese before April 2020 on home caregivers’ experience and needs for enteral nutrition were included. The studies were selected by screening titles, abstracts and full texts, and the quality of each study was assessed by two researchers independently. Review methods Two researchers independently used qualitative assessment and review tools for quality assessment and thematic synthesis for data analysis. Results This review included 10 articles. The themes identified included balance the enteral nutrition, the experiences and feelings in practice and the recommendations to meet challenge. Conclusion Home caregivers reported that they played an important role and faced greater pressure. Future studies should establish a systematic and standardized follow‐up schedule to improve home caregivers’ physical and mental health. Impact The findings established that home caregivers experienced not only changes in their roles and concerns but also spiritual changes. Home caregivers develop different coping strategies to adapt to enteral nutrition without standardized training and support. Although home caregivers make much account of enteral nutrition and feeding issues, they lack of information and support services. Understanding existing problems from a caregiver's perspective can allow interventions to be more clearly developed and well‐established training standards established in the future.

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A scoping review of best practices in home enteral tube feeding

Byrnes

Mockler²,

Lyons³

et al. 2022

Prim Health Care Res Dev

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Aims: To review the experiences of healthcare professionals (HCPs) and service users on the provision and receipt of home enteral nutrition (HEN) in primary care settings, respectively. Backgrounds: HEN supports the nutritional needs of service users in primary care settings who are unable to meet their nutritional requirements through oral intake alone. While HEN supports service users to remain in their home, the provision of HEN services can be variable. The prevalence of HEN is increasing as health systems shift delivery of care from acute to primary care settings, and therefore the evolving needs of HCPs and service users in relation to HEN deserve exploration. Methods: Quantitative and qualitative studies were included if they described (1) practices that support best outcomes in adults on HEN and residing in their own homes and/or (2) service user and HCP experiences of HEN. Studies on the economics of HEN were included. Databases searched included MEDLINE/PubMed, EMBASE, Web of Science, and CINAHL. Publications up to March 2021 were included. A descriptive analytical approach was used to summarise the findings. Findings: Key themes included the importance of initial education to enable service users to adapt to HEN and the need for support from knowledgeable HCPs. Access to support from HCPs in primary care was limited, and some HCPs felt their knowledge of HEN was inadequate. Service users highlighted the significant impact of HEN on daily living and emphasised the need for support from a HEN team. HEN services were also associated with reduced hospital admissions, lengths of stay in hospital, and costs of hospitalisation. Conclusions: A specialist HEN service can manage enteral nutrition-related complications, reduce unnecessary hospital admissions, and improve quality of care and patient satisfaction. Further education of HCPs is needed on the provision of HEN.

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The experiences and support needs of people living at home with an enteral tube: a qualitative interview study

Cited by 12 publications

References 37 publications

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

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

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

A scoping review of best practices in home enteral tube feeding

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