‘It's about what I'm able to do’: Using the capabilities approach to understand the relationship between quality of life and vascular access in patients with end-stage kidney failure

Abstract

Prevalence rates of End-Stage Kidney Failure (ESKF) have risen in across the world in recent years, making it one of the most common chronic illnesses. The main treatment for ESKF is haemodialysis, where one is ‘connected’ to a dialysis machine to clean and filter the blood via a surgically-created portal, also known as ‘vascular access’. Without functioning vascular access, dialysis is impossible. People with ESKF have different experiences with their access modalities, but universally describe their access point as a ‘lifeline’. Previous research has emphasised the impact it can have on wellbeing (Kalloo et al., 2016; Casey et al., 2014; Quinn et al., 2008), and specifically on short- and long-term outcomes.Capturing Quality of Life (QoL) within ESKF populations has traditionally focused upon assessing wellbeing from an objective, normative, top-down stance, rather than appreciating the nuanced effect vascular access can have as experienced by those living with kidney failure. In this article, we argue current QoL measures used with ESKF groups are insufficient at capturing the impact of vascular access on wellbeing. Using the accounts of twenty-four haemodialysis patients, we share insights into the direct and indirect influences vascular access has upon QoL, using Nussbaum's Capabilities Approach as an analytical lens. By prioritising and privileging the voices of those directly affected, the Vascular Access Specific Quality of Life (VA Specific-QOL) model provides a starting point for a more representative way to assess wellbeing in this group.

Keywords

• Capabilities approach
• Chronic illness
• Dialysis
• Quality of life
• Vascular access