Maintaining ordinariness around food: partners’ experiences of everyday life with a dying person

Authors

  • Viktoria Wallin RN,

    PhD Student, Corresponding author
    1. Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden
    2. Palliative Research Centre, Ersta University College and Ersta Hospital, Stockholm, Sweden
    • Correspondence: Viktoria Wallin, PhD Student, Palliative Research Centre, Ersta University College and Ersta Hospital, PO Box 111 89, SE-100 61 Stockholm, Sweden. Telephone: +46 766 365 091

      E-mail: viktoria.wallin@esh.se

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  • Ida Carlander PhD,RN,

    R&D Manager, Affiliated Researcher
    1. Palliative Research Centre, Ersta Skondal University College and Ersta Hospital, Stockholm, Sweden
    2. Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden
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  • Per-Olof Sandman RN,

    Professor
    1. Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden
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  • Britt-Marie Ternestedt PhD,RNT,

    Professor
    1. Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden
    2. Palliative Research Centre, Ersta University College and Ersta Hospital, Stockholm, Sweden
    3. Research, Development and Education Unit, Stockholms Sjukhem Foundation, Stockholm, Sweden
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  • Cecilia Håkanson PhD,RN

    Assistant Director, Affiliated Researcher
    1. Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden
    2. Palliative Research Centre, Ersta University College and Ersta Hospital, Stockholm, Sweden
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Abstract

Aims and objectives

To explore partners’ experiences of everyday life in caring for a dying person with eating deficiencies at home.

Background

When a dying person receives care at home, eating deficiencies can influence everyday life for family members, who often take responsibility for the provision of food and meals. The literature reveals this to be emotionally stressful. Partners of dying persons are challenged both as caregivers and as partners who will soon lose their life companion. There is a need for studies that provide enhanced understanding about the influence of dying persons’ eating deficiencies on their partners, from the perspective of everyday life.

Design

A qualitative design was chosen to obtain experience-based knowledge of relevance for the clinical context of palliative home care.

Methods

Nine people were purposefully selected and interviewed three–six months after the death of their partner. Data collection and analysis were guided by an interpretive descriptive method.

Results

The partners described experiences of how eating deficiencies brought about changes in the participants’ everyday lives. Two patterns of experiences were identified: the challenge of doing the best for their dying partner around matters involving food and mealtimes, and experiences of striving to maintain ordinariness, including holding on to social values around food, despite experiences of unfamiliarity when the dying partners’ habits were changed.

Conclusion

Living close to a person who has eating deficiencies at the end of life is challenging, both from a caring perspective and for personal well-being.

Relevance to clinical practice

The findings can assist palliative home care teams and other healthcare professionals to give support that goes beyond giving practical advice about food. Initiating talk about the current situation around food and meals at home, by posing questions and opening the way for conversations, is suggested.

Ancillary