Experiences of Caregivers of Patients With Conservatively Managed Kidney Failure: A Mixed Methods Systematic Review

Background: Older people with kidney failure often choose conservative kidney care. The experiences and quality of life (QOL) of caregivers who support them are incompletely characterized. Objective: To determine the burden, QOL, and understand experiences of caregivers supporting patients managed conservatively. Design: Systematic review of quantitative and qualitative studies. Sources of information: PubMed, Embase, PsycINFO, CINAHL, and MEDLINE electronic databases were systematically searched for quantitative and qualitative studies published between January 2000 and July 2020. Subjects: Caregivers of adults with kidney failure (estimated glomerular filtration rate < 15 mL/min/1.73 m(2)) managed conservatively. Methods: Data were extracted by 2 independent reviewers using a prespecified extraction tool. Study quality was assessed using the Critical Appraisal Skills Program (CASP) tool. Measurements: Descriptive reports of demographics, measurement scales, and outcomes. Thematic synthesis of qualitative data. Results: Six studies met inclusion criteria, including 3 quantitative and 3 descriptive qualitative studies. Caregivers of patients receiving conservative kidney management (CKM) experienced significant caregiver burden and similar impacts to their QOL as those caring for patients receiving dialysis. Thematic synthesis revealed 5 themes: Understanding the concept of CKM, Need for involvement in the decision for CKM, Identifying available supports, Uncertainty about the future and negotiating deteriorations and dying, and Burden of care impacting on QOL. Limitations: Low numbers of included studies, data collection and recruitment biases in qualitative studies and small caregiver numbers in quantitative studies, limit transferability of findings. Heterogeneity in study design and outcome measures precluded meta-analysis. Conclusions: Caregivers of patients with conservatively managed kidney failure suffer significant burden and experience QOL comparable with those caring for patients on dialysis. Limited understanding and involvement in conservative management decision making, and a fear of deterioration and dying, result in anxiety in caregivers. Further research into the experiences of caregivers will help support both caregivers and the patients who choose conservative management. Registration: PROSPERO registration number CRD42021209811.