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Meanings of being a close relative of a family member treated with haemodialysis approaching end of life

Authors

  • Lena Axelsson RN, PhD,

    Senior Lecturer, Corresponding author
    1. Sophiahemmet University, Stockholm, Sweden
    2. Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden
    • Correspondence: Lena Axelsson, RN, PhD, Sophiahemmet University, Box 5605, 114 86 Stockholm. Telephone: +46 70 848 93 08.

      E-mail: lena.axelsson@shh.se

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  • Birgitta Klang RNT,

    Associate Professor
    1. Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden
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  • Carina Lundh Hagelin RN, PhD,

    Senior Lecturer
    1. Sophiahemmet University, Stockholm, Sweden
    2. Department of Learning, Informatics, Management and Ethics, Medical Management Center, Karolinska Institutet, Stockholm, Sweden
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  • Stefan H Jacobson MD, PhD,

    Professor
    1. Division of Nephrology, Department of Clinical Sciences, Danderyd University Hospital, Karolinska Institutet, Stockholm, Sweden
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  • Sissel Andreassen Gleissman RN, PhD

    Senior Lecturer
    1. Sophiahemmet University, Stockholm, Sweden
    2. Department of Clinical Sciences, Danderyd Hospital, Karolinska Institutet, Stockholm, Sweden
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Abstract

Aims and objectives

To describe and elucidate the meanings of being a close relative of a severely ill family member treated with maintenance haemodialysis approaching the end of life.

Background

End-stage renal disease together with comorbidities, haemodialysis treatment and high mortality rates also affects the lives of close relatives, who report burdens and impaired quality of life. To improve care, more understanding is needed of close relatives' experiences during these patients' end of life.

Design

This study has a qualitative interpretative design.

Methods

Fourteen retrospective qualitative interviews were conducted with close relatives (aged 48–93 years) of deceased patients who had been treated with haemodialysis. The interview text was interpreted using a phenomenological hermeneutical method in three phases.

Results

The findings of the structural analysis were formulated as six themes: Striving to be supportive and helpful without doing harm to the ill person's self; Needing increasing strength and support; Balancing the will to help with one's own ongoing life; Increasing responsibility involving dilemmas; Striving for a good life together in the present and Living with awareness of death.

Conclusions

Close relatives strive for balance and well-being accompanying their ill family member through the end of life. They are facing moral dilemmas and growing demands as their responsibility increases with the deterioration of their family member. Support from and interaction with the healthcare professionals is then of significance.

Relevance to clinical practice

Findings challenge healthcare professionals in haemodialysis settings to identify close relatives' individual resources and needs towards the patients' end of life. Healthcare professionals in haemodialysis settings need to offer close relatives opportunities to talk about the future and what may be expected at end of life, with or without haemodialysis. They should also contact the closest relative after the death as they may need confirmation and closure.

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