07 Jul Chronic Kidney Disease Patients Struggle to Make Meaning of Their Illness
MedicalResearch.com Interview with:
Dr. Ann M. O’Hare, MD
Professor,Division of Nephrology
University of Washington
Investigator, VA HSR&D Center of Excellence
Affiliate Investigator, Group Health Research Institute
MedicalResearch.com: What is the background for this study? What are the main findings?
Response: We set out to conduct a qualitative study among patients with advanced kidney disease to learn about their thoughts and experience with advance care planning.
Our questions, especially at the beginning of the interview were quite broad and asked patients more generally about their experiences of illness and care. Although we did not ask patients about the emotional impact of illness and care, this came across as a strong theme when we analyzed the interviews, and that is what we describe here.
MedicalResearch.com: What should readers take away from your report?
Response: Our results provide a window on the patient experience of illness and care. Increasingly care is fragmented across providers and settings and sometimes across health systems and patients’ relationships with individual providers often have limited reach.
What we found is that providers’ lack of insight and understanding of their experience of illness and care and what mattered most to them could leave them feeling alone, alienated, mistrustful and even abandoned. These feelings could also occur not just as a result of interactions with individual providers, but also as a result of how care was organized and how providers did (or did not) work together. Patients also struggled to make meaning of their illness, and were quick to blame themselves and to assume that their illness could have been prevented.
MedicalResearch.com: What recommendations do you have for future research as a result of this work?
Response: More work is needed to see how widespread these negative emotions might be, identify their root causes and formulate interventions/approaches to address them. We think this could be a very fruitful area for investigation that may ultimately lead to meaningful improvements in care.
Disclosure: The study was funded by the Department of Veterans Affairs Health Services Research and Development Service
Ann M. O’Hare, Claire Richards, Jackie Szarka, Lynne V. McFarland, Whitney Showalter, Elizabeth K. Vig, Rebecca L. Sudore, Susan T. Crowley, Ranak Trivedi, and Janelle S. Taylor
Emotional Impact of Illness and Care on Patients with Advanced Kidney Disease
CJASN CJN.14261217; published ahead of print June 28, 2018, doi:10.2215/CJN.14261217
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