Get access

Experiences of carers supporting dying renal patients managed without dialysis

Authors

  • Helen Noble BSc PhD RN,

    Lecturer, Corresponding author
    • Health Services Research, School of Nursing and Midwifery, Queen's University Belfast, Medical Biology Centre, UK
    Search for more papers by this author
  • Daniel Kelly PhD RN,

    1. Royal College of Nursing Chair of Nursing Research, School of Nursing and Midwifery Studies, Cardiff University, UK
    Search for more papers by this author
  • Peter Hudson PhD RN

    Director, Professor
    1. Centre for Palliative Care, c/o St Vincent's Hospital and The University of Melbourne, Australia
    2. School of Nursing and Midwifery, Queen's University, Belfast, UK
    Search for more papers by this author

Correspondence to Helen Noble: e-mail: helen.noble@qub.ac.uk

Abstract

Aim

To explore the impact of being a family carer to patients with stage 5 chronic kidney disease managed without dialysis.

Background

Increasing numbers of patients with renal disease worldwide are making the decision not to embark on dialysis. This group has significant physical and psychological symptom burdens similar to or greater than those in advanced cancer patients. Little is known about the impact on family carers.

Design

Exploratory, qualitative design.

Methods

The study was undertaken with 19 carers caring for patients managed in a Renal Supportive Care Service in the UK between 2006–2008. Sixty-one semi-structured interviews and detailed field notes inform the analysis.

Findings

‘Caring from diagnosis to death’ was the overarching theme illustrated by three sub-themes: (i) Caregiver's plight – making sense of the disease and potential deterioration; (ii) Having to care indefinitely; and (iii) Avoiding talk of death. ‘Caring from diagnosis to death’ coincides with an original concept analysis of renal supportive care, which is considered an adjunct to the management of patients with renal disease at all stages of their illness.

Conclusion

There is a clear need for further research internationally and theory-based nursing interventions to support carers of patients managed without dialysis. The development of a holistic, integrated care pathway based on carer perspectives, which includes identification of information needs related to original diagnosis, associated comorbidities, treatment options, prognosis, and assistance in developing strategies to manage communication with patients as the end of life approaches, is required.

Get access to the full text of this article

Ancillary