The CLAHRC NWL project "This Sickle Cell Life’, examines young people’s experiences of living with sickle cell, and explores how young people with sickle cell move from using child to adult services. A sociological approach is taken to look beyond clinical settings to include the wider picture, thinking about how education, social relationships and family relationships are affected by transitions to adulthood.
Preliminary analysis of qualitative interviews with young people has highlighted their struggles to exercise their patient expertise in healthcare settings. This ranges from negotiating their care in hospital to how they interact with others in their social context, for example with peers and teachers at school.
On the one hand, young people are experts in their own body and are being constantly reminded to take responsibility for their own care. On the other hand, their voices are often disregarded when they try to put their expertise into practice, for example when asking for pain relief or talking to peers about pain. This has implications not only for how they feel as patients who should be recognised as experts in their sickle cell, but also how they assert their right to good care. Their ability to utilise their patient expertise is further hindered by the lack of public awareness about the condition, and young people with sickle often keep their sickle cell status to themselves. This ‘social silencing’ has a protective function but it can also limit young people’s attempts to self-manage their condition or access help from others when needed.