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Struggling in an inescapable life situation: being a close relative of a person dependent on home enteral tube feeding

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  • Kaisa Bjuresäter
  • Maria Larsson
  • Elsy Athlin

Abstract

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. Relevance to clinical practice. Support to facilitate the situation of close relatives should be given from the health care. One way to organise the care could be through a nurse‐led clinic, which provides continuous support, information and counseling.

Suggested Citation

  • Kaisa Bjuresäter & Maria Larsson & Elsy Athlin, 2012. "Struggling in an inescapable life situation: being a close relative of a person dependent on home enteral tube feeding," Journal of Clinical Nursing, John Wiley & Sons, vol. 21(7‐8), pages 1051-1059, April.
  • Handle: RePEc:wly:jocnur:v:21:y:2012:i:7-8:p:1051-1059
    DOI: 10.1111/j.1365-2702.2010.03596.x
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    Cited by:

    1. Sue M. Green & Kay Townsend & Nikki Jarrett & Catherine Westoby & Mandy Fader, 2019. "People with enteral tubes and their carers' views of living with a tube and managing associated problems: A qualitative interview study," Journal of Clinical Nursing, John Wiley & Sons, vol. 28(19-20), pages 3710-3720, October.
    2. Mei Ling Lim & Bei Yi Paulynn Yong & Mei Qi Maggie Mar & Shin Yuh Ang & Mei Mei Chan & Madeleine Lam & Ngian Choo Janet Chong & Violeta Lopez, 2018. "Caring for patients on home enteral nutrition: Reported complications by home carers and perspectives of community nurses," Journal of Clinical Nursing, John Wiley & Sons, vol. 27(13-14), pages 2825-2835, July.

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