Parent experience of children with sickle cell disease in schools
Research type
Research Study
Full title
The experiences of parents of children with sickle cell disease within the school environment.
IRAS ID
354427
Contact name
Megan Maidment
Contact email
Sponsor organisation
Univeristy of Hertfordshire
Clinicaltrials.gov Identifier
n/a, n/a
Duration of Study in the UK
1 years, 6 months, 30 days
Research summary
Research question:
What are the experiences for parents of children with sickle cell disease (SCD) within the school environment?Aims:
Given the complexity of the structural racism faced by individuals living with SCD, a chronic health condition associated with a multitude of physiological, psychological, and cognitive difficulties, this research which will form the thesis in the study of a Doctorate in Clinical Psychology, aims to better understand the experiences of parents, whom will most likely be living with either SCD or have sickle cell trait in the heterogeneous form, of children with SCD, specifically in relation to the schooling. This thesis aims to better understand how parents understand the prognosis of SCD, what areas of schooling are affected by SCD including: reasonable adjustments, the impact of school absence and what contributes to absence (for example crises, pain, fatigue, vascular events), what peer support is available for parents in school communities, what parent’s understandings of the neuropsychological needs of their children may be, and what communication is like between parents and schools. This study also aims to understand family perspectives on whether or not they access care and why, and how paediatric psychology services might be able to support with any of these areas.This study will be recruiting adult parents of children who are living with a diagnosis of sickle cell disease in the UK whom are currently attending school. This will include parents of children (aged 4-18) attending mainstream schools.
Methodology:
Observational descriptive qualitative exploration of the lived experience of parents of children with sickle cell disorder through the use of semi-structured interview, accounting for the subjective socio-political perspective and environment impacting the broad experiences of a genetic condition.
Planned analysis method:
Reflexive Thematic Analysis to explore an in-depth account from individuals experiencing life impacted by SCD as a medical but also socio-political phenomenon.REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
25/NW/0224
Date of REC Opinion
2 Oct 2025
REC opinion
Further Information Favourable Opinion