Introduction:
Prevalence of and outcomes from Chronic Kidney Disease (CKD) are inequitable across race, gender, age and socioeconomic status. Inaccessibility of nephrology services contributes to differential outcomes, with people who present late (< 90 days between first contact with nephrology services and initiation of renal replacement therapy) suffering poorer outcomes. We conducted a qualitative study to better understand the factors that influence access to and experience of healthcare services for people with CKD and at risk of CKD in London.
Methods:
A qualitative study was conducted as a cross-sector collaboration between nephrology services and an expert community-based research and social justice organisation (Mabadiliko Community Interest Company (CIC)) to capture seldom heard experiences. To gain deeper insight into people’s journeys in and through nephrology care, two groups of participants were recruited: 1) those with risk factors for CKD or early stage CKD, and 2) people who presented late to nephrology services (purposively selected to represent the demographics of the wider cohort). Demographic and medical characteristics were recorded after informed consent. Semi-structured interviews were co-designed with people with lived experience, and conducted by Mabadiliko CIC. Inductive and deductive thematic analyses, as well as a framework analysis (using the COM-B model and Behavioural Change Wheel), were performed by Mabadiliko CIC. Themes were reviewed and refined as part of co-productive sessions with nine participants.
Results:
Twenty interviews were undertaken. 65% (n=13) of participants were <65 years of age. 55% (n=11) of participants were Black African or Caribbean, 30% (n=6) White and 15% South Asian (n=3). 50% (n=10) were female. Diagnosis was often protracted, shocking, anxiety-inducing and unsupported. Pre-existing knowledge about CKD and its risks was varied. Relationships with healthcare practitioners and services also ranged in quality: some people reported feeling dismissed, disempowered and distrusting in interactions with healthcare practitioners. Participants valued care which offered continuity, autonomy, attentiveness, transparency and cultural sensitivity. In terms of impact of wider system and societal influences: healthcare services were described as inaccessible - including appointment times, transport and information. Discrimination based on age, race, and class was reported.
Conclusions:
This study captures the experiences of people at different stages of their journey with CKD, in accessing and engaging with nephrology services. Participants faced a complex array of challenges, highlighting opportunities for interventions at societal, system, service, interpersonal, community and individual levels. Key opportunities include: improving accessibility, promoting inclusive care practices, enhancing education and support systems, and fostering better patient-provider relationships. The study is strengthened by platforming the invaluable expertise of a diverse group of people with lived experience - enabled by Mabadiliko CIC. Further support for, and evaluation of, partnerships between institutional and community-based research organisations to improve service offerings for marginalised and minoritised groups, is required.
I have no potential conflict of interest to disclose.
I did not use generative AI and AI-assisted technologies in the writing process.