People with enteral tubes and their carers' views of living with a tube and managing associated problems: A qualitative interview study.
enteral nutrition
gastrostomy
home care services
nutritional support
Journal
Journal of clinical nursing
ISSN: 1365-2702
Titre abrégé: J Clin Nurs
Pays: England
ID NLM: 9207302
Informations de publication
Date de publication:
Oct 2019
Oct 2019
Historique:
received:
02
04
2019
revised:
27
05
2019
accepted:
16
06
2019
pubmed:
27
6
2019
medline:
26
11
2019
entrez:
27
6
2019
Statut:
ppublish
Résumé
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. 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. A qualitative descriptive design using semi-structured in-depth interviews was employed. 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. 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. 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. 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.
Sections du résumé
BACKGROUND
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
OBJECTIVE
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
METHODS
A qualitative descriptive design using semi-structured in-depth interviews was employed.
METHODS
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
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
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
CONCLUSIONS
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.
Types de publication
Journal Article
Langues
eng
Pagination
3710-3720Subventions
Organisme : Department of Health
ID : CAT CL-2013-04-014
Pays : United Kingdom
Organisme : National Institute for Health Research and Health Education England
ID : CL-2013-04-014
Informations de copyright
© 2019 The Authors. Journal of Clinical Nursing Published by John Wiley & Sons Ltd.
Références
Bjuresäter, K., Larsson, M., & Athlin, E. (2012). Struggling in an inescapable life situation: Being a close relative of a person dependent on home enteral tube feeding. Journal of Clinical Nursing, 21, 1051-1059. https://doi.org/10.1111/j.1365-2702.2010.03596.x
Bjuresäter, K., Larsson, M., & Athlin, E. (2015). Patients' experiences of home enteral tube feeding (HETF) - A qualitative study. Journal of Research in Nursing, 20, 552-565. https://doi.org/10.1177/1744987114568655
Boland, K., Maher, N., O'Hanlon, C., O'Sullivan, M., Rice, N., Smyth, M., & Reynolds, J. V. (2017). Home enteral nutrition recipients: Patient perspectives on training, complications and satisfaction. Frontline Gastroenterology, 8, 79-84. https://doi.org/10.1136/flgastro-2016-100736
Boullata, J. I., Carrera, A. L., Harvey, L., Escuro, A. A., Hudson, L., Mays, A., … Guenter, P. (2017). ASPEN Safe practices for enteral nutrition therapy. Journal of Parenteral and Enteral Nutrition, 41, 15-103. https://doi.org/10.1177/0148607116673053
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101. https://doi.org/10.1191/1478088706qp063oa
Brotherton, A., & Abbott, J. (2009). Clinical decision making and the provision of information in PEG feeding: An exploration of patients and their carers' perceptions. Journal of Human Nutrition and Dietetics, 22, 302-309. https://doi.org/10.1111/j.1365-277X.2009.00966.x
Brotherton, A. M., Abbott, J., Hurley, M. A., & Aggett, P. J. (2007). Home percutaneous endoscopic gastrostomy feeding: Perceptions of patients, carers, nurses and dietitians. Journal of Advanced Nursing, 59, 388-397. https://doi.org/10.1111/j.1365-2648.2007.04307.x
Chang, S. C., Huang, C. Y., Lin, C. H., Tu, S. L., Chao, M. S., & Chen, M. H. (2015). The effects of systematic educational interventions about nasogastric tube feeding on caregivers' knowledge and skills and the incidence of feeding complications. Journal of Clinical Nursing, 24, 1567-1575. https://doi.org/10.1111/jocn.12748
Correa, J. A., Fallon, S. C., Murphy, K. M., Victorian, V. A., Bisset, G. S., Vasudevan, S. A., … Lee, T. C. (2014). Resource utilization after gastrostomy tube placement: Defining areas of improvement for future quality improvement projects. Journal of Pediatric Surgery, 49, 1598-1601. https://doi.org/10.1016/j.jpedsurg.2014.06.015
Cresswell, J. (2013). Qualitative inquiry and research design (3rd ed.). London, UK: SAGE Publications.
Creswell, J., & Plano Clark, V. (2018). Designing and conducting mixed methods research. Los Angeles, CA: SAGE.
Drake, R., Ozols, A., Nadeau, W. J., & Braid-Forbes, M. J. (2017). Hospital inpatient admissions with dehydration and/or malnutrition in medicare beneficiaries receiving enteral nutrition: A cohort study. Journal of Parenteral and Enteral Nutrition, 42, 730-738. https://doi.org/10.1177/0148607117713479
Gramlich, L., Hurt, R. T., Jin, J., & Mundi, M. S. (2018). Home enteral nutrition: Towards a standard of care. Nutrients, 10, 1020. https://doi.org/10.3390/nu10081020
Green, S. M., Townsend, K., Jarrett, N., & Fader, M. (2019). The experiences and support needs of people living at home with an enteral tube: a qualitative interview study. Journal of Human Nutrition and Dietetics, https://doi.org/10.1111/jhn.12656
Halliday, V., Baker, M., Thomas, A. L., & Bowrey, D. (2017). Patient and family caregivers' experiences of living with a jejunostomy feeding tube after surgery for Esophagogastric Cancer. Journal of Parenteral and Enteral Nutrition, 41, 837-843. https://doi.org/10.1177/0148607115604114
Holloway, I., & Wheeler, S. (2010). Qualitative research in nursing and healthcare. Oxford, UK: Blackwell.
Jordan, S., Philpin, S., Warring, J., Cheung, W. Y., & Williams, J. (2006). Percutaneous endoscopic gastrostomies: The burden of treatment from a patient perspective. Journal of Advanced Nursing, 56, 270-281. https://doi.org/10.1111/j.1365-2648.2006.04006.x
Jukic, N. P., Gagliardi, C., Fagnani, D., Venturini, C., & Orlandoni, P. (2017). Home enteral nutrition therapy: Difficulties, satisfactions and support needs of caregivers assisting older patients. Clinical Nutrition, 36, 1062-1067. https://doi.org/10.1016/j.clnu.2016.06.021
Kurien, M., White, S., Simpson, G., Grant, J., Sanders, D. S., & McAlindon, M. E. (2012). Managing patients with gastrostomy tubes in the community: Can a dedicated enteral feed dietetic service reduce hospital readmissions? European Journal of Clinical Nutrition, 66, 757-760. https://doi.org/10.1038/ejcn.2012.19
Kwong, J. P. Y., Stokes, E. J., Posluns, E. C., Fitch, M. I., McAndrew, A., & Vandenbussche, K. A. (2014). The experiences of patients with advanced head and neck cancer with a percutaneous endoscopic gastrostomy tube: A qualitative descriptive study. Nutrition in Clinical Practice, 29, 526-533. https://doi.org/10.1177/0884533614532693
Lim, M. L., Yong, B. Y. P., Mar, M. Q. M., Ang, S. Y., Chan, M. M., Lam, M., … Lopez, V. (2018). Caring for patients on home enteral nutrition: Reported complications by home carers and perspectives of community nurses. Journal of Clinical Nursing, 27, 2825-2835. https://doi.org/10.1111/jocn.14347
Martin, L., Blomberg, J., & Lagergren, P. (2012). Patients' perspectives of living with a percutaneous endoscopic gastrostomy (PEG). BMC Gastroenterology, 12, 126-133. https://doi.org/10.1186/1471-230X-12-126
Mayre-Chilton, K. M., Talwar, B. P., & Goff, L. M. (2011). Different experiences and perspectives between head and neck cancer patients and their care-givers on their daily impact of a gastrostomy tube. Journal of Human Nutrition and Dietetics, 24, 449-459. https://doi.org/10.1111/j.1365-277X.2011.01165.x
NICE (2012). Nutrition support in adults. Quality standard [QS24]. Manchester, UK: National Institute for Health and Clinical Excellence.
O'Brien, B. C., Harris, I. B., Beckman, T. J., et al. (2014). Standards for reporting qualitative research: a synthesis of recommendations. Acad Med, 89, 1245-1251.
Ojo, O. (2015). The challenges of home enteral tube feeding: A global perspective. Nutrients, 7, 2524-2538. https://doi.org/10.3390/nu7042524
Roberge, C., Tran, M., Massoud, C., Poirée, B., Duval, N., Damecour, E., … Henry-Amar, M. (2000). Quality of life and home enteral tube feeding: A French prospective study in patients with head and neck or oesophageal cancer. British Journal of Cancer, 82, 263-269. https://doi.org/10.1054/bjoc.1999.0913
Robson, C. (2002). Real world research. Oxford, UK: Blackwell Publishing.
Rogers, S. N., Thomson, R., O'Toole, P., & Lowe, D. (2007). Patients experience with long-term percutaneous endoscopic gastrostomy feeding following primary surgery for oral and oropharyngeal cancer. Oral Oncology, 43, 499-507. https://doi.org/10.1016/j.oraloncology.2006.05.002
Stavroulakis, T., Baird, W. O., Baxter, S. K., Walsh, T., Shaw, P. J., & McDermott, C. J. (2016). The impact of gastrostomy in motor neurone disease: Challenges and benefits from a patient and carer perspective. BMJ Supportive and Palliative Care, 6, 52-59. https://doi.org/10.1136/bmjspcare-2013-000609
Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19, 349-357. https://doi.org/10.1093/intqhc/mzm042
Townley, A., Wincentak, J., Krog, K., Schippke, J., & Kingsnorth, S. (2017). Pediatric gastrostomy stoma complications and treatments: A rapid scoping review. Journal of Clinical Nursing, 27, 1369-1380.
Wager, E.. & Kleinert S. (2011) Responsible research publication: international standards for authors. A position statement developed at the 2nd World Conference on Research Integrity, Singapore, 22-24 July 2010. In T. Mayer, & N. Steneck (Eds.), Promoting research integrity in a global environment. Singapore: Imperial College Press/ World Scientific Publishing. Available to download at the COPE (Committee on Publication Ethics) website at http://publicationethics.org/files/International%20standards_authors_for%20website_11_Nov_2011.pdf
Wei-Kuo, C., Ning-Chi, W., Wei-Ming, W., & Jeng-Feng, C. (2014). Prospective evaluation of peristomal cutaneous changes among patients with long-term percutaneous endoscopic gastrostomy. Advances in Skin and Wound Care, 27, 260-267. https://doi.org/10.1097/01.ASW.0000449854.63913.25
Welch, A., & Jirojwong, S. (2014). Data collection in qualitative research. In S. Jirojwong, M. Johnson, & A. Welch (Eds.), Research methods in nursing and midwifery. Melbourne, Australia: Oxford University Press. pp. 121-139.
Whitehead, L. (2014). Qualitative data analysis. In S. Jirojwong, M. Johnson, & A. Welch (Eds.), Research methods in nursing and midwifery (2nd ed.). Melbourne, Australia: Oxford University Press. pp. 140- 161.
Williams, G. F., White, H., Sen, M., & Prestwich, R. J. D. (2018). Patients' experience of enteral feeding following (chemo) radiotherapy for head and neck cancer: A qualitative study. Clinical Nutrition, 38(3), 1382-1389.