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NHS SICKLE CELL AND THALASSAEMIA SCREENING PROGRAMME
The NHS Sickle Cell & Thalassaemia (SC&T) Screening Programme aims to offer effective and appropriate antenatal and neonatal screening programmes for haemoglobinopathy and sickle cell disease. These conditions are disproportionately found amongst people from black and minority ethnic backgrounds. The NHS Sickle Cell and Thalassaemia (SC&T) Screening Programme commissioned ETHNOS to conduct a number of projects.
Evaluation of the “Family Origin Questionnaire"
ETHNOS regularly conducts evaluations in the field of minority ethnic health. For this project, ETHNOS evaluated the adequacy of the Family Origin Questionnaire (FOQ) used to identify parents who are in high risk groups for being a carrier for SC&T. The evaluation involved a range of health professionals (midwives, antenatal care coordinators, consultant haematologists and biomedical scientists) to find out how to improve both the questionnaire itself and its administration ahead of the implementation of the Screening Programme nationally. The research identified issues with the layout, presentation, content and administration of the FOQ. It also identified organisational factors likely to impact on the success of the Programme. The research report was published and distributed nationally.
Designing community outreach interventions
The NHS Sickle Cell & Thalassaemia (SC&T) Screening Programme also wanted to develop outreach programmes to ensure that the population at greatest risk of SC&T would have sufficient awareness of the Screening Programme and knowledge of the conditions to make informed decisions in relation to screening and various treatment and management options. They commissioned ETHNOS to: recommend partner organisations and advise on their capacity and possible areas for joint working; suggest types of intervention and resources needed to support them; and propose an evaluation framework that will help to identify underpinning principles and learning points to inform the longer term delivery of public health education. The projects will produce lasting resources that can be used across various sites and with different target groups.
