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The beliefs and expectations of patients and caregivers about home haemodialysis: an interview study
  1. Allison Tong1,2,
  2. Suetonia Palmer3,
  3. Braden Manns4,
  4. Jonathan C Craig1,2,
  5. Marinella Ruospo5,
  6. Letizia Gargano5,
  7. David W Johnson6,
  8. Jörgen Hegbrant7,
  9. Måns Olsson8,
  10. Steven Fishbane9,
  11. Giovanni F M Strippoli2,10,11,12
  1. 1Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia
  2. 2Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
  3. 3Department of Medicine, University of Otago Christchurch, Christchurch, New Zealand
  4. 4Department of Medicine and Community Health Sciences, University of Calgary, Calgary, Canada
  5. 5Diaverum Scientific Office, Medical-Scientific Office, Diaverum Renal Services Group, Lund, Sweden
  6. 6School of Medicine, University of Queensland at Princess Alexandra Hospital, Brisbane, Queensland, Australia
  7. 7Diaverum Medical Office, Diaverum Renal Services Group, Lund, Sweden
  8. 8Diaverum Renal Services Group, Lund, Sweden
  9. 9School of Medicine, Hofstra Northshore LIJ, Great Neck, New York, USA
  10. 10Department of Clinical Pharmacology and Epidemiology, Consorzio Mario Negri Sud, Bari, Italy
  11. 11Diaverum Scientific Office, Lund, Sweden
  12. 12Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
  1. Correspondence to Professor Giovanni Strippoli; gfmstrippoli{at}gmail.com

Abstract

Objectives To explore the beliefs and expectations of patients and their caregivers about home haemodialysis in Italy where the prevalence of home haemodialysis is low.

Design Semistructured, qualitative interview study with purposive sampling and thematic analysis.

Setting Four dialysis centres in Italy without home haemodialysis services (Bari, Marsala, Nissoria and Taranto).

Participants 22 patients receiving in-centre haemodialysis and 20 of their identified caregivers.

Results We identified seven major themes that were central to patient and caregiver perceptions of home haemodialysis in regions without established services. Three positive themes were: flexibility and freedom (increased autonomy, minimised wasted time, liberation from strict dialysis schedules and gaining self-worth); comfort in familiar surroundings (family presence and support, avoiding the need for dialysis in hospital) and altruistic motivation to do home haemodialysis as an exemplar for other patients and families. Four negative themes were: disrupting sense of normality; family burden (an onerous responsibility, caregiver uncertainty and panic and visually confronting); housing constraints; healthcare by ‘professionals’ not ‘amateurs’ (relinquishing security and satisfaction with in-centre services) and isolation from peer support.

Conclusions Patients without direct experience or previous education about home haemodialysis and their caregivers recognise the autonomy of home haemodialysis but are very concerned about the potential burden and personal sacrifice home haemodialysis will impose on caregivers and feel apprehensive about accepting the medical responsibilities of dialysis. To promote acceptance and uptake of home haemodialysis among patients and caregivers who have no experience of home dialysis, effective strategies are needed that provide information about home haemodialysis to patients and their caregivers, assure access to caregiver respite, provide continuous availability of medical and technical advice and facilitate peer patient support.

  • Qualitative Research

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