Young people's needs of Sickle Cell Disease in education v1
Research type
Research Study
Full title
Young people's experiences of being supported with Sickle Cell Disease within their educational setting.
IRAS ID
353741
Contact name
Megan Maidment
Contact email
Sponsor organisation
University of Hertfordshire
Duration of Study in the UK
1 years, 2 months, 1 days
Research summary
The present study will aim to explore young people's experiences of being supported with Sickle Cell Disease within their educational setting. Understanding their experiences will open up avenues for further discussions and possible implementations of how to better support young people within education or other areas of their lives. The proposed project will be a qualitative study using photo elicitation and semi structured interviews. This study will aim for a sample size of 4-10 participants with a Sickle Cell Disease diagnosis and in full time education e.g. mainstream or a special school between the ages of 10-17. Participants will be excluded if they do not have a Sickle Cell Disease diagnosis, are not in education (either mainstream or special school) or are having a Sickle Cell crisis. Participants will have 2 weeks to take pictures of their experiences of Sickle Cell. They will be invited to semi-structured interviews which will be an adapted "SHOWeD" interview schedule (Olausson, & Lindahl, 2022) and prompts with the aim of understanding their narratives of their experience of Sickle Cell Disease in education, whether they feel supported, listened to or heard and what would be valuable for them. Interviews will be transcribed and the data analysis will use an Interpretative Phenomenological Analysis using NVivo. This research will be conducted across the following two sites - Bedfordshire Hospitals NHS Foundation Trust and Cambridge University Hospitals Foundation Trust. This research hopes to be conducted across non-NHS sites too e.g. Sickle Cell charities or support groups. This study will last for 6 months.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
25/YH/0112
Date of REC Opinion
24 Jun 2025
REC opinion
Unfavourable Opinion