Patients with kidney failure share their definitions for health
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According to interview responses published in Kidney Medicine, patients with kidney failure who have experienced several forms of treatment shared three common themes when defining health.
Among patients, health was defined as the ability to engage in meaningful activities, working for balance and living in context.
“In reviewing existing research and considering the development of additional tools to support shared decision-making [SDM], we recognized a potential disparity between how people living with kidney disease and the interdisciplinary team (IDT) operationalize the terms ‘health’ and ‘healthy,’” Renata Sledge, PhD, LCSW, from Fontbonne University, told Healio. “Our questions were based on evidence that a better understanding of the everyday experience of kidney failure treatments would provide information to help IDTs bridge the divide between patient/partner preferences and their current treatment modality.”
In a qualitative, interpretive phenomenological study, Sledge and colleagues collected data from 18 patients (50% were Black; 67% were women) who used at least three or more kidney failure treatment options and were recruited from online support groups and a transplant clinic. At the time of the study, seven patients had an active transplant, eight received home hemodialysis, two underwent peritoneal dialysis and one received in-center hemodialysis.
Patients completed semi-structured video interviews that lasted 60 to 180 minutes in which social workers asked about their interpretation of health. Researchers then followed a six-step data analysis process: becoming familiar with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing a report.
Overall, patients reported that being “healthy” meant being able to do things that mattered to them while maintaining balance in life. Analyses revealed three themes among patients: ability to engage in meaningful activities, working for balance and living in context.
“In many ways, the findings affirmed the research team’s emphasis on values-based decision-making,” Sledge said. “We were struck by the emphasis the participants made about the connection between their ability to do what is meaningful to them, progress in achieving life goals and their treatment environment in shaping perceptions of health.”
Researchers recommended health care providers utilize value-based decision aids to guide conversations and story-sharing about patients’ lived experiences to better treat them according to patients’ definitions of health.
“Using the biomarker and [health-related quality of life] HRQoL measures to inform questions about where the client finds meaning and the balance between physical, emotional and social needs can help establish a trusting relationship that facilitates effective SDM conversations. Several participants emphasized the value of the interdisciplinary team, especially the social worker, in helping to facilitate this balance,” Sledge said. “The nonprofit Medical Education Institute updated their free, evidence-based SDM tool to support patients and families to make and share values-based choices with their IDTs, including the nephrologist, for feedback and next steps. That tool is now called My Kidney Life Plan, and can be found at https://mykidneylifeplan.org/.”
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