This review focused on the perspectives and experiences of adults with end-stage renal disease (referred to as “patients”), their families, and their health care providers regarding accessing, offering, deciding about, undergoing, performing, and recovering from procedures to create arteriovenous fistulas (AVFs) for hemodialysis. AVFs are connections between an artery and vein used for vascular access, a process that allows a hemodialysis machine to access a patient’s blood. A total of 8 qualitative studies were synthesized.
Patients and health care providers mostly valued shared decision-making (SDM) when deciding to undergo procedures to create AVFs. The perceived benefits of SDM include patients’ increased knowledge of their condition, satisfaction, greater sense of control, and improved coping abilities. Yet, some health care providers continue to practice traditional prescriptive approaches to decision-making. Contextual factors influenced decision-making approaches and patients’ agency to access or refuse procedures to create AVFs. These factors included values, beliefs, and attitudes; the timing of decision-making; and human, structural, financial, and informational resources. People who are racialized and those experiencing poverty, houselessness, or language barriers may disproportionately experience difficulties engaging in timely and informed SDM; as a result, they may make uninformed decisions or experience traumatic unplanned dialysis initiation using a form of vascular access they did not choose.
Decision-makers may consider promoting SDM practices by integrating SDM criteria in health care performance measures and SDM reimbursement models. They may also consider providing decision aids and SDM coaching to health care providers. They may also consider tailored interventions based on unique social, financial, and language-related needs to promote equitable access to procedures to create AVFs.
During decision-making, patients weigh factors such as trust in their health care providers, past experiences, the invasive nature of procedures to create AVFs, and the anticipated outcomes of these procedures. Patients’ fears of being “cut” or experiencing pain and complications could hinder their engagement in these procedures. Patients’ concerns about an AVF being dysfunctional or hard to maintain and the anticipated pain of needles could also prevent them from wanting AVFs. Additional concerns included the risk of bleeding and an AVF’s impact on physical appearance.
The included literature provided limited insights into the perspectives and experiences of undergoing, performing, and recovering from procedures to create AVFs. However, some patients and their families experienced financial and emotional burdens while accessing these procedures in Canada. This can be exacerbated by prolonged surgical wait times and rescheduling. People in rural communities, who often had to travel long distances for care, experienced these burdens more than those living in urban areas. Additionally, 1 study reported that surgeons often lead decision-making regarding anesthesia for surgical AVF creation procedures. While considering patient preferences, some health care providers perceive that regional anesthesia made these surgeries easier to perform, potentially resulting in better-quality AVFs. However, barriers to implementing regional anesthesia include limited human resources, funding, and time.
Finally, patients recovering from procedures to create AVFs reported experiencing pain and fear related to the possibility of never using their AVF. None of the included studies explicitly reported experiences of endovascular procedures to create AVFs. Unlike surgical procedures, these more recent techniques can take place in office-based practices, are noninvasive, and may not cause surgical scarring. Research is needed to explore how implementing endovascular procedures to create AVFs would impact patients’ experiences, outcomes, and access to procedures to create AVFs. Further research is needed to explore health care provider and system barriers to using regional anesthesia.