“At least we have somewhere to go”: an exploration of adjustment experiences among people with chronic kidney disease who continued attending in-centre haemodialysis during the COVID-19 pandemic

Introduction

In the United Kingdom, there are over 25,000 people with Chronic Kidney Disease (CKD) receiving in-centre haemodialysis (ICHD). Individuals with this long-term condition have been classified as clinically extremely vulnerable from COVID-19 (Ikizler, 2020; Raab, 2020), and data from the UK Renal Registry (2020) has also shown higher rates of infection and increased risk of mortality among this patient population. However, people with CKD must adhere to their treatment regime and continue to attend clinical centres for dialysis despite the risk of contracting COVID-19 with potentially serious consequences. This has

had a detrimental impact on people’s experiences of ICHD and increased their risk of psychological distress and disturbance. Therefore, the aim of this study was to investigate the impact of COVID-19 on ICHD patients’ coping, adjustment and wellbeing, as well as to explore how people experienced ICHD during the pandemic and gain insights into how those experiences affected their psychological adjustment and mental health.

Methods

This study utilised a mixed-methods design, by collecting questionnaire surveys and conducting qualitative semi-structured interviews with people with CKD receiving ICHD in the UK during the COVID-19 pandemic. Forty people (18 female, 22 male) completed a questionnaire survey and reported COVID-19-related adverse impacts on treatment and rated their COVID-19-related concerns. They then completed the Depression, Anxiety and Stress Scale (DASS-21) and four scales of the Kidney Disease Quality of Life Short-Form (KDQLS). Fourteen respondents also took part in a semi-structured interview following completion of the questionnaire to discuss their experiences. The interviews were audio-recorded and transcribed verbatim, before being analysed using thematic analysis (Braun & Clarke, 2006).

Results

The questionnaire results detailed that the most common adverse impacts were staff shortages/changes and impaired interaction with staff/patients. Of the respondents, 32.4% were severely depressed, 14.7% severely anxious and 18.9% severely stressed. Participants who had tested positive for COVID-19 were more depressed and reported more adverse impacts. Older and married/cohabiting participants had better adjustment and wellbeing. The thematic analysis identified four themes: perceptions of the threat of COVID-19; impacts on treatment; impaired communication; and coping and positive adjustment. Participants’ experiences extended understanding of how they were affected by measures taken to mitigate for COVID-19 and gave insights into ways that psychological impacts of COVID-19 could be mitigated by additional informational and supportive measures within dialysis units.

Discussion

The findings show how the impact of the COVID-19 pandemic on patients’ experiences of dialysis treatment influenced their coping, adjustment and wellbeing. Adjustment and wellbeing among participants were low, and levels of depression, anxiety and stress were higher than for pre-COVID studies of ICHD patients using the same measure. Participants indicated having a lower quality of life, and their experiences demonstrated that those undergoing ICHD during the pandemic understood their vulnerability to disease, which combined with

lockdown mitigations significantly heightened their risk of adverse mental health impacts. The results can help to identify the additional psychological support that dialysis patients need to maintain positive adjustment and wellbeing and inform enhanced clinical practice for ICHD during outbreaks of infectious disease.