Please use this identifier to cite or link to this item: https://doi.org/10.1186/s12882-019-1259-4
Title: Family dynamics in a multi-ethnic Asian society: comparison of elderly CKD patients and their family caregivers experience with medical decision making for managing end stage kidney disease
Authors: Ozdemir, Semra 
Jafar, Tazeen H 
Choong, Lina Hui Lin 
Finkelstein, Eric Andrew 
Keywords: Science & Technology
Life Sciences & Biomedicine
Urology & Nephrology
End stage kidney disease
Elderly
Family caregivers
Decision making
Treatment preferences
OF-LIFE CARE
CONSERVATIVE MANAGEMENT
OLDER PATIENTS
PALLIATIVE CARE
DIALYSIS
PREFERENCES
CANCER
TRUTHFULNESS
SURVIVAL
OUTCOMES
Issue Date: 1-Mar-2019
Publisher: BMC
Citation: Ozdemir, Semra, Jafar, Tazeen H, Choong, Lina Hui Lin, Finkelstein, Eric Andrew (2019-03-01). Family dynamics in a multi-ethnic Asian society: comparison of elderly CKD patients and their family caregivers experience with medical decision making for managing end stage kidney disease. BMC NEPHROLOGY 20 (1). ScholarBank@NUS Repository. https://doi.org/10.1186/s12882-019-1259-4
Abstract: © 2019 The Author(s). Background: Elderly end stage kidney patients face a decision concerning whether or not to initiate dialysis. In Asia, this decision is highly influenced by family caregivers. The objective of this paper was to understand patients' experience with and preferences for family involvement in treatment decisions, and via a series of hypothetical vignettes, to identify whether there was discordance in treatment preferences between patients and their caregivers, and how any potential conflicts were reconciled. Methods: We conducted a survey with 151 elderly (aged ≥65) chronic kidney disease patients and their caregivers at outpatient renal clinics. The survey asked, when making treatment decisions, whom they wish makes the final decisions (i.e., preference) and who usually makes the final decisions (i.e., experience). The survey also presented a series of choice vignettes for managing patient's condition and asked respondents to choose between two hypothetical treatment profiles in each vignette. Patients and caregivers were first interviewed separately in tandem, and then were brought together to choose a treatment jointly for vignettes where the initial treatment choice differed within the dyad. We used multivariate regressions to investigate the predictors of discordance and reconciliation. Results: We found that most (51%) patients preferred and experienced (64%) significant involvement from caregivers. However, 38% of patients preferred to make final decisions alone but only 27% of patients did. In the hypothetical vignettes, caregivers chose the more intensive option (i.e., dialysis) more than patients did (26% vs 19%; p < 0.01). Overall, 44% of the dyads had discordance in at least 3 vignettes, and the odds of discordance within patient-caregiver dyads was higher when caregivers chose dialysis or treatment with the higher cost (p < 0.01). In half the cases, discordance resolved in the patients' favor, and this was more likely to be the case if the patient was employed and wanted to be in charge of final decisions (p < 0.01). Conclusions: Our results highlight the important role of caregivers in decision-making but also the potential for them to overstep. Clinicians should be aware of this challenge and identify strategies that minimize the chances that patients may receive treatments not consistent with their preferences.
Source Title: BMC NEPHROLOGY
URI: https://scholarbank.nus.edu.sg/handle/10635/155342
ISSN: 14712369
14712369
DOI: 10.1186/s12882-019-1259-4
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