In early 2019, the COVID-19 pandemic led to may people living with sickle cell disorders (SCD) to be regarded as ‘clinically extremely vulnerable’ and advised to “shield” in order to reduce the risks. With COVID-19 disproportionately impacting upon racialized minority groups in the UK; with those with SCD already at risk of social isolation; and with their routine hospital care potentially disrupted, people with SCD then faced even greater challenges. A collaborative research project between De Montfort University; Leicester Royal Infirmary, OSCAR Sandwell and OSCAR Birmingham led to the production of these guides to ty to support the wellbeing of people living with SCD at these challenging times.
Berghs, M., Horne, F., Yates, S., Graham, S., Kemp, R., Webster, A. & Howson, C. (2022). Black Sickle Cell Patients’ Lives Matter: Healthcare, long- term shielding and psychological distress during a racialized pandemic in England – a mixed-methods study. BMJ Open, 12: 12:e057141
https://bmjopen.bmj.com/content/12/9/e057141
Berghs, M., Horne, F., Yates, S., Kemp, R., & Webster, A. (2024). The indignities of shielding during the COVID-19 pandemic for people with sickle cell: An Interpretive Phenomenological Analysis, Special Issue Intersections of Aging and Disability During the COVID-19 Pandemic: Frontiers in Medical Sociology, 9
https://doi.org/10.3389/fsoc.2024.1334633
A Guide to Sickle Cell and Wellbeing (PDF Document)
Guide-To-Sickle-Cell-and-Wellbeing-2020.pdf (ststn.co.uk)
We also published a report about our findings entitled, “Ask me if I am okay”: COVID-19 and the psychological and social impact of long-term shielding experiences of people with sickle cell disorders and their care-givers. We found that the general psychological health and wellbeing of people with SCD and their families was being neglected in services during the pandemic.