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Struggling in an inescapable life situation: being a close relative of a person dependent on home enteral tube feeding
Karlstad University, Faculty of Social and Life Sciences, Department of Nursing.ORCID iD: 0000-0002-4974-6845
Karlstad University, Faculty of Social and Life Sciences, Department of Nursing.ORCID iD: 0000-0003-0417-6161
Karlstad University, Faculty of Social and Life Sciences, Department of Nursing.
2012 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 7-8, p. 1051-1059Article in journal (Refereed) Published
Abstract [en]

Aim. To explore what it means to be a close relative of a person dependent on home enteral tube feeding (HETF) and how they can manage this situation. Background. Previous studies have shown that the situation of close relatives in home care in general can be burdensome and difficult. Research is scarce about experiences of close relatives when patients are treated with HETF. Design. A qualitative design was used, in accordance with grounded theory ( GT). Methods. Twelve close relatives were interviewed twice, using open- ended questions. Five were relatives of patients supported by home care services or advanced home care teams. Using the GT method, sampling, data collection and data analysis were carried out simultaneously. Results. One core category, ` Struggling in an inescapable life situation' and eight categories were found. The situation led to involuntary changes in the lives of the close relatives, something they could do little about. Their lives had become completely upturned and restricted by the HETF. Togetherness and pleasure was lost and they felt lonely. The relatives faced a new role of being informal caregivers and they had to adjust their daily life accordingly. They felt forced to take on a heavy responsibility for which they lacked support. The close relatives struggled to manage and to make the best of their new situation. Conclusions. This study highlighted the demands and vulnerability which is embedded in the role of being a close relative of a patient with HETF. It also pointed out their need for comprehensive support from the health care system.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2012. Vol. 21, no 7-8, p. 1051-1059
Keywords [en]
grounded theory; home care; home enteral tube feeding; informal caregiver; relatives; tube feeding
National Category
Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:kau:diva-6416DOI: 10.1111/j.1365-2702.2010.03596.xISI: 000301427600018OAI: oai:DiVA.org:kau-6416DiVA, id: diva2:353639
Available from: 2010-09-28 Created: 2010-09-28 Last updated: 2017-12-12Bibliographically approved
In thesis
1. Home enteral tube feeding  - from patients’, relatives’ and nurses’ perspectives
Open this publication in new window or tab >>Home enteral tube feeding  - from patients’, relatives’ and nurses’ perspectives
2010 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Changes in the health-care system during the past decades have led to an increased transfer of health care to the home environment which also concerns patients treated with home enteral tube feeding (HETF). Research is scarce about how HETF care is functioning. Therefore, the overall aim with this thesis was to describe and explore HETF care and treatment from patients', relatives' and nurses' perspectives. Three qualitative and one quantitative study were used. The findings showed that the HETF treatment and care had a great impact on daily life for both patients and their relatives and implied many practical, emotional and social problems in their daily life, which they strived to manage. Side effects were common and the patients' reported low HRQL and general health. The amount and quality of received guidance and support from the health care, not least before discharge, turned out to have impact on the patients' and the relatives' daily life and how they could manage their situation. Lack of guidance and support meant insecurity, worries and distress. Cooperation in the care trajectory was found to be decisive for how well the care was running. Nurses' knowledge about tube feeding and discharge planning procedures, their commitment to the patients' care, as well as clarity regarding responsibility of HETF care were factors of crucial importance on how the cooperation worked, and the quality of the HETF care. This thesis shows the need of improvements regarding the care of HETF patients and their relatives. 

Place, publisher, year, edition, pages
Karlstad: Karlstads universitet, 2010. p. 75
Series
Karlstad University Studies, ISSN 1403-8099 ; 2010:26
Keywords
home enteral tube feeding, home care, quality of life, care trajectory, discharge planning, patients, relatives, nurses
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-6325 (URN)978-91-7063-317-1 (ISBN)
Public defence
2010-10-15, Lagerlöfsalen 1A 305, Karlstads universitet, Karlstad, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2010-09-28 Created: 2010-09-05 Last updated: 2015-10-07Bibliographically approved

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Bjuresäter, KaisaLarsson, MariaAthlin, Elsy

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