title: A 'lost life': coming to terms with haemodialysis.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Sydney Nursing School, University of Sydney, Sydney, NSW, Australia; Level 3 West Cardiovascular Service, Concord Repatriation General Hospital, Concord, NSW, Australia.
authors.forename: Susan
authors.initials: S
authors.lastname: Monaro
authors.forename: Glenn
authors.initials: G
authors.lastname: Stewart
authors.forename: Janice
authors.initials: J
authors.lastname: Gullick
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D007676:Kidney Failure, Chronic / Q000451:nursing / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D006435:Renal Dialysis / Q000523:psychology*
keywords: caregivers; chronic kidney disease; end-stage kidney disease; family; haemodialysis; phenomenology