Home Enteral Nutrition therapy: Difficulties, satisfactions and support needs of caregivers assisting older patients

P, Nikolina Jukic; Gagliardi, Cristina; Fagnani, D.; Venturini, C.; Orlandoni, P.

doi:10.1016/j.clnu.2016.06.021

Cited by 43 publications

(79 citation statements)

References 15 publications

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“…As a result, participants all described their feelings about adapting to and living with the ET. Although the burden of treatment is recognised (5,(33)(34)(35)(36) , similar to other studies, many participants in the present study described the ET in positive terms emphasising how important it was for life (7,8,37,38) . Participants described the tube as part of the context of their life and expressed how they managed day-to-day, including for some taking a vacation and working.…”

Section: Discussionsupporting

confidence: 80%

“…A recent study by Jukic et al . explored the experience of carers who supported older patients with HEN in Italy and outlined the importance of supporting caregivers. MacDonald et al .…”

Section: Discussionmentioning

confidence: 99%

“…Training on tube management undertaken in the busy hospital environment prior to discharge may be forgotten on discharge. As other studies have highlighted (8) , the first few days following discharge can be frightening as people learn to manage the tube and complications that can arise. Bjuresater et al (5) highlighted that a lack of preparation before discharge in terms of support at home will result in insecurity and uncertainty.…”

Section: Discussionmentioning

confidence: 99%

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

Green

Townsend

Jarrett

et al. 2019

J Human Nutrition Diet

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Background The number of people with an enteral tube (ET) living at home is increasing globally and services to support them to manage this complex and life‐changing intervention vary across regions. The present study aimed to gain an understanding of the experiences of people living at home with an ET and their carers, as well as to explore their views of supporting services and ET‐related hospital admissions. Methods A qualitative inductive descriptive design was employed. Semi‐structured, face‐to‐face interviews with a purposive sample of people with an ET living at home and carers were undertaken. Interviews were transcribed, initial codes were assigned for salient constructs, and these were then grouped and developed into themes and sub‐themes. Results Nineteen people with ETs and 15 carers of people with ETs were interviewed. Five themes were generated: home better than hospital, feelings about the tube, living with the tube, help when you need it and cost for health service. Participants indicated the ET significantly influenced daily life. Participants described becoming used to coping with the ET at home over time and developing strategies to manage problems, avoid hospital admission and reduce resource waste. Variation in supporting services was described. Conclusions People with ETs and their carers need considerable support from knowledgeable, responsive healthcare practitioners during the weeks following initial placement of the ET. Twenty‐four hour services to support people with ETs should be designed in partnership with the aim of reducing burden, negative experience, waste and hospital admissions. National frameworks for home enteral nutrition could set the standard for support for people with ETs.

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Section: Discussionsupporting

confidence: 80%

“…A recent study by Jukic et al . explored the experience of carers who supported older patients with HEN in Italy and outlined the importance of supporting caregivers. MacDonald et al .…”

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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

Green

Townsend

Jarrett

et al. 2019

J Human Nutrition Diet

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“…Managing the ET and nutrient delivery is disruptive to lifestyle and time consuming (Bjuresäter, Larsson, & Athlin, ; Mayre‐Chilton, Talwar, & Goff, ; Rogers, Thomson, O'Toole, & Lowe, ). The family of the person with an ET are often impacted with some describing the new lifestyle as a struggle (Bjuresäter, Larsson, & Athlin, ; Jukic, Gagliardi, Fagnani, Venturini, & Orlandoni, ). Although the impact of the ET and associated management may be described negatively, the importance of the ET to life is well documented (Jukic et al, ; Kwong et al, ; Stavroulakis et al, ; Williams, White, Sen, & Prestwich, ).…”

Section: Introductionmentioning

confidence: 99%

“…The family of the person with an ET are often impacted with some describing the new lifestyle as a struggle (Bjuresäter, Larsson, & Athlin, ; Jukic, Gagliardi, Fagnani, Venturini, & Orlandoni, ). Although the impact of the ET and associated management may be described negatively, the importance of the ET to life is well documented (Jukic et al, ; Kwong et al, ; Stavroulakis et al, ; Williams, White, Sen, & Prestwich, ). Exploration of people's experience of living with an ET enables healthcare providers to better tailor interventions to meet the needs of people with ETs and their carers.…”

Section: Introductionmentioning

confidence: 99%

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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Caregiver burden and eating‐related guilt during dysphagia rehabilitation: A descriptive cross‐sectional time series study

Mori,

Nakane,

Yokota

et al. 2024

J Parenter Enteral Nutr

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BackgroundCaregivers of patients with chronic dysphasia experience stress and guilt regarding their eating behaviors. Dysphagia rehabilitation, including minimal oral intake with tube feeding, may be vital for caregivers. This study investigated the effects of dysphagia rehabilitation on caregiver well‐being and attitudes toward eating assistance.MethodsThis cross‐sectional questionnaire study was conducted at two dental university hospitals on caregivers of homebound patients with dysphagia undergoing rehabilitation. Caregivers' experiences, with an emphasis on guilt and psychological status, were assessed using the Apathy Scale and Patient Health Questionnaire‐5 Depression Scale. Patients were evaluated at the time of the survey and rehabilitation commencement using the Barthel Index and Functional Oral Intake Scale (FOIS). Changes in FOIS scores and caregiver guilt were assessed using the Wilcoxon signed rank test and McNemar test, respectively. The impact of oral intake changes on caregiving motivation was assessed using the Fisher exact test.ResultsBetween August 2019 and January 2021, 55 of 100 targeted caregivers responded (median age=64.5 years). A significant difference in FOIS scores was found (median rehabilitation duration=9.7 months). Despite 25 pneumonia cases, 65% of the caregivers continued to encourage oral intake. Guilt decreased from 48% during peak dysphagia to 22% at survey time (odds ratio=0.2, 95% CI=0.04–0.70; P < 0.01). No association was found between caregiving motivation and improved oral intake.ConclusionSevere dysphagia impacted caregiver well‐being, indicating preferences for patients' oral intake. To support caregivers, healthcare professionals should explore and integrate new multidisciplinary approaches into dysphagia rehabilitation strategies.

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Home Enteral Nutrition therapy: Difficulties, satisfactions and support needs of caregivers assisting older patients

Cited by 43 publications

References 15 publications

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

The experiences and support needs of people living at home with an enteral tube: 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

Caregiver burden and eating‐related guilt during dysphagia rehabilitation: A descriptive cross‐sectional time series study

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