Co-design of Sickle Cell Disease Services Study
Research type
Research Study
Full title
A study of adolescents', carers' and health professionals’ views, experiences and expectations of services to support young people with sickle cell disease using co-design to develop an intervention to enhance services.
IRAS ID
272702
Contact name
Michelle Ellis
Contact email
Sponsor organisation
City, University of London
Duration of Study in the UK
2 years, 0 months, days
Research summary
Sickle cell disease is the most common genetic disorder in the UK which affects over 1 in 2000 births and 15,000 people. It is common for children to have repeated admissions to hospital due to SCD. In the UK, there has been an increasing trend in admission rates (Aljuburi, 2012). This rise in admission rate has increased from 21.2 per 100,000 in 2001/2002 to 33.5 per 100,000 in 2009/2010 for adolescents. London accounts for three quarters of the admissions in the UK with the highest being in City and Hackney Primary Care Trust. As well as the increasing numbers of admissions there is evidence that adolescents can have poor attendance to hospital appointments and adherence to their treatment. According to Leader and Raanani (2014) non-adherence is prevalent amongst adolescents and young adults with this condition. This can impact 50% of patients. Dimatteo (2004) and Crosby (2009) found that the communication and relationships between children and professionals can also impact adherence. Attendance to services has been shown to enhance adherence to treatment.
Aim
To explore adolescents', carers' or parents' or guardians and health professionals' views, experiences and expectations of services and to co-design an intervention for adolescents with sickle cell disease.Objectives (summary)
To improve understanding of SCD services by exploring the views, experiences, and expectations of adolescents with SCD, their parents/ carers and health professionals involved in care.
To use these understandings to co-design an intervention to enhance services within Barts Health NHS Trust.
Participants
Adolescents with Sickle Cell Disease, their parents/ carers ‘and health professionals involved in sickle cell disease.
The research will be conducted within sites where adolescents with SCD age 10-19 will be cared within the hospital setting. These are Emergency Department, Wards, Day Units and Out-Patient Departments in different sites at Barts Health NHS Trust between February, 2023-January, 2025.
REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
23/YH/0033
Date of REC Opinion
25 May 2023
REC opinion
Further Information Favourable Opinion