The FiSCD Study: Understanding Fatigue in children and young people with Sickle Cell Disease
The Sickle Cell Society is excited to be working on a new research project, looking at fatigue in children and young people with sickle cell.
Titled “Understanding Fatigue in Children and Young People with Sickle Cell Disease to Guide the Co-Development of a Fatigue Self-Management Intervention” the research is being conducted by the University of Manchester, University of York, Manchester University NHS Foundation Trust and the Sickle Cell Society.
The project is funded by the National Institute for Health Research (under the Research for Patient Benefit programme).
People with sickle cell disorder (SCD) have anaemia which makes them feel tired all the time. For children and young people (CYP) with SCD, being continually tired has a negative impact on them physically, socially and emotionally. However, health services overlook the tiredness they experience and there is nothing 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 programme for fatigue management. Once we have this information, we will use it to develop a programme with CYP, parents and healthcare professionals.
In the first stage of the project, we are going to find out what we already know about self-management programmes that have already been developed for CYP for SCD by reading and summarising studies that have already been published. This information will help us understand what types of programmes work best in improving health and wellbeing and what CYP think about them.
In the second stage of the project, we will talk to 15 CYP with SCD, five parents and 10 healthcare professionals to help us understand SCD fatigue better. We will also find out from them what they think would be best to include in a programme to help children and young people cope better with fatigue and how this should be provided.
PATIENT AND PUBLIC INVOLVEMENT
We have worked with a group of young people with SCD in developing this project. They have helped us develop the research idea, aims and how to carry the study out. They will form the PPI advisory group for the project and will be involved in all stages of the study including our dissemination activities.
As this project progresses, we will make more information available to you, including on our website, social media and through our e-newsletter.
This will include how you can get involved and support the project and eventually the research’s findings.
Watch this space.
For more information, please contact Dr Brenda Poku on firstname.lastname@example.org