Alicia Renedo, Cicely Marston & Sam Miles (London School of Hygiene and Tropical Medicine)
Our NIHR-funded 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. We take a sociological approach 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.
Our 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.
There are interesting research outcomes for this project, particularly because we want to recognise on-the-ground expertise more formally through a co-production approach. This direction includes co-writing a paper about hospital experiences with sickle cell patient experts and a carer for a young person with sickle cell. We have written a paper about this ‘slow co-production’ approach, in which we explore how working together with patients from the start and throughout a research project helps progress a deeper understanding of patient involvement, and leads to stronger relationships between patients and researchers. You can read more here.
Policy and dissemination outcomes are vitally important to this project, especially when the focus is on young people with less-heard voices. We are hoping to hold an event with young people with sickle cell, their friends and family, and clinicians, educators and other stakeholders later this year to present some of our findings and hear more from young people about how some of these findings can be best passed on to those whose job it is to help young people with sickle cell and other long-term illnesses. This is relevant both to their transition journeys from child to adult services in a healthcare setting, but also more widely in terms of schools and social situations in which knowledge and understanding of sickle cell can be patchy and outdated.
We’re looking forward to this exciting stage of the research; in the meantime, you can visit our new DEPTH (Dialogue, Evidence, Participation and Translation for Health) website to learn more about this and other community involvement projects. We also run a twitter account for This Sickle Cell Life, where we’d love to hear from you. Finally, if you have any questions or feedback please don’t hesitate to contact Alicia Renedo, at Alicia.firstname.lastname@example.org.
Disclaimer and acknowledgments:
This project was funded by the National Institute for Health Research Health Services and Delivery Research Programme (project number 13/54/25). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HS&DR Programme, NIHR, NHS or the Department of Health.
The research team acknowledges the support of the National Institute for Health Research Clinical Research Network (NIHR CRN)