Carers of people undergoing dialysis face daily challenges and require more support, new study finds

[Image: Joan Rogerson and her husband Trevor]

Carers of people having dialysis suffer significant burden and poorer quality of life than the general population, a study by Sunshine Coast Hospital and Health Service (SCHHS) and The George Institute for Global Health has found.

SCHHS Director of Renal Services, Associate Professor Nicholas Gray, led the systematic review, which examined all the published literature on the quality of life and burden experienced by carers of people receiving dialysis therapies. The review also found the quality of life of carers of people having dialysis was similar to carers of people with other chronic diseases.

Currently, over 13,000 people require permanent dialysis in Australia and 50,000 have advanced chronic kidney disease.

Associate Professor Gray said: “Carers who support a chronically ill kidney patient are faced with many challenges, including managing the comfort of the patient, financial issues, meal planning, scheduling and transportation. Just keeping track of patients' multiple medications is a challenge.”

“We found most carers were female spouses and their quality of life was poorer than the general population and mostly comparable with carers of people with other chronic diseases. Carers also reported a significant burden on their lives.”

Clinical Director of Kidney Health Australia, Dr Shilpa Jesudason said: “It isn’t just the life of the patient impacted by dialysis, but also the carers. As dialysis therapy is often lifelong, dreams such as travel may go out the window.”

Joan Rogerson lives at Tewantin with her 76-year-old husband Trevor who has needed dialysis for the last four years. She said:

“Caring is a 24 hour a day job. I am always planning my life around dialysis and doctor visits and everything else has to take second place. Our retirement plans are finished.”

Associate Professor Meg Jardine from The George Institute for Global Health said: “Perhaps one of the most interesting outcomes of the study was identifying the gaps in our knowledge. Very little is known on carers of people dialysing at home and yet their support can be critical in making home treatment successful.  

“Studying the impact and burden of caring for a person receiving dialysis at home is an important area for future research. Most importantly, we need to identify and implement interventions that improve carer well-being.” 

Read the full text of 'Burden of care and quality of life among caregivers for adults receiving maintenance dialysis: A systematic review', published in the American Journal of Kidney Diseases. (PDF 840KB)