Understanding hospital care for patients in sickle cell crisis
Led by Stephen Hibbs
Stephen has been training as a haematology registrar in East London since 2017 and started a HARP doctoral fellowship in 2022. Research in haematology tends to focus on molecular mechanisms of disease or clinical studies with quantitative outcomes. In contrast, Stephen’s interests have been in how patients and caregivers shape meaning out of illness and healthcare experiences.
Patients with sickle cell disease often experience stigma, disbelief and uncompassionate care in hospital. This was recently reiterated in the “No One’s Listening” report from the All Party Parliamentary Group on Sickle Cell and Thalassaemia. Whilst these problems have been identified for some time, the mechanisms behind them are less clear. Stephen’s research aims to understand what would constitute good care in hospital for patients experiencing sickle cell crises, and to identify the barriers to achieving this. His research uses East London as a multilevel case study: looking at patient experience, health professional experience, how sickle cell crisis care is enacted in practice, and the wider policy context.
Through a combination of in-depth interviews, ethnographic observation and documentary analysis, Stephen’s research aims to answer:
- How do people with sickle cell disease experience the hospital during a crisis?
- How do healthcare practitioners experience caring for patients in sickle cell crisis?
- How do hospital consultations and experiences of care play out in practice?
Stephen’s HARP fellowship is funded by the Wellcome Trust, Barts Charity, the Trustees of the Medical College of St Bartholomew’s Hospital, Barts Health NHS Trust and East London Foundation Trust.