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Abstract: FR-PO507

Home Dialysis Caregivers in the Veterans Health Administration: Qualitative Study of Motivation, Roles, Experiences, and Needs

Session Information

Category: Dialysis

  • 702 Dialysis: Home Dialysis and Peritoneal Dialysis

Authors

  • Jones, Lindsey A., VA Information Resource Center, Hines, Illinois, United States
  • Gordon, Elisa J., Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States
  • Hogan, Timothy Patrick, VA Center for Healthcare Organization and Implementation Research, Bedford, Massachusetts, United States
  • Fiandaca, Cindi, Center of Innovation for Complex Chronic Healthcare, Hines, Illinois, United States
  • Smith, Bridget M., Center of Innovation for Complex Chronic Healthcare, Hines, Illinois, United States
  • Stroupe, Kevin, Center of Innovation for Complex Chronic Healthcare, Hines, Illinois, United States
  • Fischer, Michael J., Jesse Brown VA Chicago Healthcare System, Chicago, Illinois, United States
Background

Although home dialysis often confers greater survival and quality of life than in-center dialysis for end-stage kidney disease patients, it is substantially underutilized. Informal caregivers play a key role in patients’ eligibility, availability, and use of home dialysis. Nonetheless, little is known about the burdens confronting caregivers or their unmet needs, which must be addressed to inform support strategies. We assessed motivation, roles, experiences, and needs of caregivers assisting Veterans receiving home dialysis in the Veteran’s Health Administration (VHA).

Methods

Semi-structured phone interviews were conducted with informal (unpaid) caregivers of Veterans receiving home dialysis at five geographically dispersed VHA facility-based programs during 2017-2018. Transcribed interviews were analyzed using content analysis to identify themes emergent in the data.

Results

Participants included 20 caregivers - 16 cared for home peritoneal dialysis patients and 4 for home hemodialysis patients. Caregivers had a mean age of 63 years. Most were female (95%), non-Hispanic (96%), White (79%), married or partnered (95%), had some college education (63%), and were retired (58%). Twenty-five percent of caregivers spent more than 5 hours per day on caregiving tasks, and 50% assisted with at least one-half of dialysis treatments. Themes for motivation included: concern for patient well-being, altruism, conversations with others, prior experience, and convenience. Themes for roles described: treatment supporting tasks, treatment related tasks, and treatment unrelated tasks. Themes for experiences included: impacts on caregiver wellbeing, freedom, and finances. Themes describing needs included: additional staff and peer support, improved education and resources, incorporation of mental health support, resources to mitigate geographical barriers, assistance with caregiving tasks, respites, and financial support.

Conclusion

Our findings underscored the substantial burdens and wide-ranging needs confronting home dialysis caregivers, as well as their motivations for continuing to serve in this role. These insights can inform the development of targeted strategies intended to support caregivers and by extension, enhance use of home dialysis by Veterans.

Funding

  • Veterans Affairs Support