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Keywords:

  • caregivers;
  • chronic kidney disease;
  • end-stage kidney disease;
  • family;
  • haemodialysis;
  • phenomenology

Aims and objectives

To describe the essence of the lived experience of patients and families in the early phase of long-term haemodialysis therapy.

Background

Past qualitative research has taken a long-term view describing established haemodialysis therapy as it impacts on physical limitations and changes in self-concept, psychosocial well-being and sense of dignity with subsequent consequences for family roles and financial status.

Design

This study used the qualitative approach of Heideggerian phenomenology.

Methods

Eleven patients with end-stage kidney disease who had recently initiated haemodialysis and five family carers engaged in semi-structured interviews. These were recorded and transcribed verbatim and analysed using an hermeneutic framework.

Results

The essence of the early dialysis experience was a ‘lost life’, and participants were overwhelmed by shock and grief. This appeared to result from a lack of mental and physical preparation for dialysis as a long-term management strategy. A loss of sense of self, loss of spontaneity and personal freedom and loss of social connectedness challenged the participants' ability to contribute to family and community. Changed body sensations ranged from improved wellness to a sense of depletion and fatigue. Family caregivers found the caring role was unremitting and required intense vigilance.

Conclusions

Patients and family members in the early phase of dialysis may have difficulty perceiving a positive future.

Relevance to clinical practice

A greater focus on preparation for the possibility of dialysis and frameworks of care that support adjustment to this new way of life are of vital importance. Family presence during haemodialysis and support groups for patients and family should be actively facilitated.