Canadian Journal of Kidney Health and Disease (Nov 2023)
Alignment Among Patient, Caregiver, and Health Care Provider Perspectives on Hemodialysis Vascular Access Decision-Making: A Qualitative Study
Abstract
Background: Updates to the Kidney Disease Outcomes Quality Initiative Clinical Practice Guideline for Vascular Access emphasize the “right access, in the right patient, at the right time, for the right reasons.” Although this implies a collaborative approach, little is known about how patients, their caregivers, and health care providers engage in vascular access (VA) decision-making. Objective: To explore how the perspectives of patients receiving hemodialysis, their caregivers, and hemodialysis care team align and diverge in relation to VA selection. Design: Qualitative descriptive study. Setting: Five outpatient hemodialysis centers in Calgary, Alberta. Participants: Our purposive sample included 19 patients receiving maintenance hemodialysis, 2 caregivers, and 21 health care providers (7 hemodialysis nurses, 6 VA nurses, and 8 nephrologists). Methods: We conducted semi-structured interviews with consenting participants. Using an inductive thematic analysis approach, we coded transcripts in duplicate and characterized themes addressing our research objective. Results: While participants across roles shared some perspectives related to VA decision-making, we identified areas where views diverged. Areas of alignment included (1) optimizing patient preparedness—acknowledging decisional readiness and timing, and (2) value placed on trusting relationships with the kidney care team—respecting decisional autonomy with guidance. Perspectives diverged in the following aspects: (1) differing VA priorities and preferences—patients’ emphasis on minimizing disruptions to normalcy contrasted with providers’ preferences for fistulas and optimizing biomedical parameters of dialysis; (2) influence of personal and peer experience—patients preferred pragmatic, experiential knowledge, whereas providers emphasized informational credibility; and (3) endpoints for VA review—reassessment of VA decisions was prompted by access dissatisfaction for patients and a medical imperative to achieve a functioning access for health care providers. Limitations: Participation was limited to individuals comfortable communicating in English and from urban, in-center hemodialysis units. Few informal caregivers of people receiving hemodialysis and younger patients participated in this study. Conclusions: Although patients, caregivers, and healthcare providers share perspectives on important aspects of VA decisions, conflicting priorities and preferences may impact the decisional outcome. Findings highlight opportunities to bridge knowledge and readiness gaps and integrate shared decision-making in the VA selection process.