@article{0573d191e40c45fca41a373e68ca6884,
title = "An Exploratory Qualitative Study of Patient and Caregiver Perspectives of Ambulatory Kidney Palliative Care",
abstract = "Objectives: The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program. Methods: Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design. Results: We identified 2 themes: “Communication addressing the emotional and physical aspects of disease” and “Filling gaps in care”; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation. Significance of Results: Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.",
keywords = "ambulatory, kidney disease, palliative care, qualitative",
author = "Bristol, {Alycia A.} and Sobaata Chaudhry and Dana Assis and Rebecca Wright and Derek Moriyama and Katherine Harwood and Brody, {Abraham A.} and Charytan, {David M.} and Joshua Chodosh and Scherer, {Jennifer S.}",
note = "Funding Information: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr. Assis received funding from the American Society of Nephrology Small Grants Program: Geriatric Nephrology and Palliative Care, Dr. Harwood received funding from the Medical Student Training in Aging Research (MSTAR) Program, Grant # 5T35AG050998. Drs. Scherer, Wright, and Brody would like to acknowledge funding support from The Cambia Health Foundation Sojourns Scholar Program. Dr. Scherer has funding from the National Institutes of Diabetes and Digestive and Kidney Diseases of National Institues of Health, under award number 1 K23 DK125840-01, and The National Kidney Foundation Young Investigator Research Program. Dr. Scherer would also like to acknowledge the support she has received from The Fan Fox and Leslie R. Samuels Foundation. Funding Information: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr. Assis received funding from the American Society of Nephrology Small Grants Program: Geriatric Nephrology and Palliative Care, Dr. Harwood received funding from the Medical Student Training in Aging Research (MSTAR) Program, Grant # 5T35AG050998. Drs. Scherer, Wright, and Brody would like to acknowledge funding support from The Cambia Health Foundation Sojourns Scholar Program. Dr. Scherer has funding from the National Institutes of Diabetes and Digestive and Kidney Diseases of National Institues of Health, under award number 1 K23 DK125840-01, and The National Kidney Foundation Young Investigator Research Program. Dr. Scherer would also like to acknowledge the support she has received from The Fan Fox and Leslie R. Samuels Foundation. Publisher Copyright: {\textcopyright} The Author(s) 2021.",
year = "2021",
month = oct,
doi = "10.1177/1049909120986121",
language = "English (US)",
volume = "38",
pages = "1242--1249",
journal = "American Journal of Hospice and Palliative Medicine",
issn = "1049-9091",
publisher = "SAGE Publications Inc.",
number = "10",
}