In the UK, those most at risk of sickle cell disorders are of African-Caribbean or African origin while thalassaemia is more commonly found among Cypriots, South Asian and Chinese populations.
A team led by medical sociologist Professor Karl Atkin worked with health services to improve screening and raise awareness of the disorders in communities at risk. They also asked children about their experience of living with sickle cell, helping to improve our understanding of the best way to manage the condition in schools.
The disorders affect red blood cells. People with thalassemia make less haemoglobin and have fewer circulating red blood cells than normal, causing mild or severe anaemia. In sickle cell disorders red blood cells become rigid and shaped like a crescent or sickle, and cause severe pain and damage to organs.
Children with sickle cell
An important element of the work was to understand the influence of faith and religion on personal decisions about screening. The conditions are recessive genetic which means that both parents must carry the trait before it can be passed on to their child. Screening rates have improved over the past couple of years, but for some parents, the process opens up ethical dilemmas.
Professor Atkin said: “If a mother is identified as a carrier, her partner should be offered screening, enabling the couple to make an informed choice on the future of the pregnancy, but evidence suggested that few fathers were being tested even when their partner was a known carrier.”
Importance of screening
The team at York listened to the views of prospective mothers, fathers and medical staff. The results influenced Government policy on screening and informed a series of advice leaflets available nationally through the NHS. The team also:
- Supported the establishment of peer educators who provided information to over 1,000 people in at-risk communities;
- Contributed to a DVD aimed at African communities;
- Contributed to a Government consultation on the re-organisation of screening services in England.
Professor Atkin said:
“Our research is developing more sensitive policy and practice that is more closely tailored to the needs of the communities most at risk from this condition. It has influenced ante-natal care and screening policies as well as advising doctors and nurses on how best to communicate with those at risk of inherited blood disorders.
“These are significant health issues with potentially serious consequences, both for those who have the disorders, but also those who are carriers of the recessive gene. Our findings are contributing to theoretical debates as well as policy and practice and will help people make informed decisions about their health.”
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