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This Sickle Cell Life: voices and experience of young people with sickle cell

This Sickle Cell Life: voices and experiences of young people with sickle cell

Understanding the experiences of young people with sickle cell as they transition to adulthood and adult healthcare services.

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To read more about the project, visit This Sickle Cell Life blog or follow us on Twitter.

About

This collaborative research project, funded by the National Institute for Health Research (NIHR), Health Services and Delivery Research Programme, examines the experiences of young people with sickle cell as they transition to adulthood and move from using child to adult services.

About
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This collaborative research project, funded by the National Institute for Health Research (NIHR), Health Services and Delivery Research Programme, examines the experiences of young people with sickle cell as they transition to adulthood and move from using child to adult services.

We take a sociological approach to look beyond the clinical realm into other areas relevant to transitions to adulthood such as education and social relationships. Working in collaboration with patient representatives, social scientists, clinicians and quality improvement experts, the project aims to facilitate dialogue about how transitions into adult healthcare can be improved, including how to improve health services for people with sickle cell.

Through this research we are contributing to knowledge of the neglected areas of both healthcare transitions and transitions to adulthood for young people with sickle cell. As well as providing valuable information for sickle cell advocacy organisations, clinicians, and improvements to NHS services, the co-produced outputs planned for this project will help children and young people with sickle cell in their transitions from child to adult care.

Publications
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'Slow co-production' for deeper patient involvement in health care
Miles, S; Renedo, A; Marston, C / Project ongoing
2018
The Journal of Health Design, 3 (1). pp. 57-62. ISSN 2206-785X DOI: https://doi.org/10.21853/JHD.2018.39