Living with sickle cell or thalassamemia trait: implications for identity and social life

We carried out a two year ESRC funded qualitative study, using focus groups and in depth- interviews, looking at the long term impact of being identified as a carrier of sickle cell or thalassaemia in a sample of 57 adults from different ethnic backgrounds. The dataset also includes data from sample of healthcare professionals on their perceptions and experiences of supporting carriers from different ethnic backgrounds within the context of the NHS screening policy (newborn and antenatal) and potential ethical issues faced by 'healthy carriers'. We also carried out focus groups with family and friends who knew someone who is a carrier, to understand wider attitudes ad concerns related to carrier status.
Copies of information leaflets used for the three subsets of samples, topic guides and consent forms are included here. We have also provided a narrative summary of the data collected and a brief note on analysis. A link to the two outputs is included. However, the forthcoming publications will be added to the project link on the Departmental website in due course.