Exploring practices of care during sickle cell crises (EPOC4)
Research type
Research Study
Full title
Exploring practices of care for people in sickle cell crisis: a multilevel case study
IRAS ID
325112
Contact name
Stephen Hibbs
Contact email
Sponsor organisation
Queen Mary University of London
Clinicaltrials.gov Identifier
https://osf.io/mwxh2, Open Science Framework database
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
Sickle cell disease (SCD) is common in the UK and affects a person's health in many ways. People living with SCD often suffer from recurrent, sudden, and severe episodes of pain called crises and sometimes need hospital treatment for these. Unfortunately, many report experiences of being undermined, misunderstood, or ignored by healthcare practitioners (HCPs). Sometimes this makes individuals worried about coming to hospital, and they may be at increased risk of serious complications by avoiding hospital altogether.
This research project aims to understand good care for people in sickle cell crises, and how to achieve this. This will be done through answering several questions. How do people living with SCD experience hospitals when they experience crises? How do HCPs experience caring for people experiencing crises? How do consultations between patients and HCPs play out in practice? And how do these experiences and practices relate to key policies and guidelines about sickle cell crisis care?
The research methods are interviews and direct observations with people experiencing sickle cell crises and with HCPs, as well as reviewing relevant documents, guidelines, and policies. The whole project will be advised by a panel of people living with SCD, and they will be invited to help to produce its final summary. The research can be used to support and educate HCPs caring for people experiencing sickle cell crises and can influence national and local policies about hospital care.
REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
23/YH/0216
Date of REC Opinion
20 Nov 2023
REC opinion
Further Information Favourable Opinion