Parents experiences of talking to children about sickle cell disease
Research type
Research Study
Full title
Illness related communication between parents and children with sickle cell disease: Parental experiences and support needs
IRAS ID
147378
Contact name
Joanne Middleton
Contact email
Sponsor organisation
University of Manchester
Research summary
Sickle Cell Disease (SCD) is blood disorder that people have if they inherit sickle cell genes from both of their parents. People with SCD have ‘sickled’ red blood cells which, because of their shape, can block blood vessels and stop the oxygen from getting to where it is needed. This can lead to severe episodes of pain and organ damage. In addition, children with SCD are at risk of stroke and need to be carefully monitored.
Parents of children with SCD are encouraged to be involved in the management of their child’s condition. This involves having knowledge about SCD as well as finding helpful and supportive ways of talking about it with their child. Psychological problems such as anxiety and depression have been found in children and adults with SCD. Research has found that children with a chronic illness cope better if the illness is talked about in a helpful way by parents. If a child has a good understanding of their illness, they are more likely to be able manage their symptoms and learn ways of coping. Parents might however avoid these discussions in order to protect their child from finding out about the risks and limitations associated with their condition.
There has been little specific research into communication with children who have SCD. The small number of studies that have been done focus on parent and adolosencent communication. Little is known about how parents talk with younger children about sickle cell disease. This study will explore parents' experiences and support needs through interviews about illness related communication with their affected young child. The findings will offer new information about how parents communicate with younger children with SCD and will hopefully inform services on how to best support parents in having helpful and supportive conversations with their child.
REC name
West Midlands - Solihull Research Ethics Committee
REC reference
14/WM/1093
Date of REC Opinion
14 Aug 2014
REC opinion
Favourable Opinion