Fatigue in children and young people with Sickle Cell Disease
Research type
Research Study
Full title
Understanding fatigue experiences of children and young people with sickle cell disease to guide the co-development of a fatigue self-management intervention.
IRAS ID
310855
Contact name
Susan Kirk
Contact email
Sponsor organisation
University of Manchester
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
0 years, 8 months, 31 days
Research summary
Sickle cell disease (SCD) is the commonest inherited blood condition in the UK. It is a life-long, life-threatening condition that mainly affects people of African or African-Caribbean origin. People with SCD have anaemia which makes them feel tired all the time. For children/young people (CYP) with SCD, being continually tired negatively impacts them physically, mentally, socially, and emotionally. However, nothing is available to help CYP live with and manage their tiredness (fatigue). We aim to tackle this neglected area by working together with CYP with SCD, parents and healthcare professionals to develop a way of helping CYP manage their fatigue. We hope this will reduce the impact of fatigue on their daily lives and improve their quality of life. Firstly, we need to understand more about how CYP live with and manage fatigue and find out what CYP, parents and healthcare professionals think should be included in a self-management programme for fatigue. Once we have this information, we will use it to develop a programme with CYP, parents and healthcare professionals. Therefore, this study will explore fatigue from the perspectives of fifteen CYP with SCD, five parents and ten healthcare providers, using in-depth, open-ended interviews. Art-based approaches such as photography, drawing and poems will be used to facilitate the interviews with the CYP. Participants will be recruited through the Manchester University NHS Foundation Trust, and the study is funded by NIHR Research for Patient Benefit.
REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
22/SW/0036
Date of REC Opinion
13 Apr 2022
REC opinion
Further Information Favourable Opinion