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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
Scientific Papers
Transitions to adulthood: self‐governance and disciplining in the making of patient citizens
Renedo, A; Miles, S; Marston, C.
When young people move from child to adult health services they redefine their identities, but we don’t yet know enough about how these transitions shape identities. Our interviews with young people with sickle cell disease explored how they define new identities as they transition to adulthood. We show that health transitions are tricky for young people, who have to balance competing demands for self‐discipline: to stay healthy while working hard to become successful adults in other areas of their life. The development of adult identities for young people with SCD can be exhausting, involving relentless self-disciplining and self-monitoring in different aspects of life. They see themselves as in constant need of improvement. We conclude that it is crucial to create enabling spaces for young people to protect their health while still developing identities that help them achieve life goals.
2019
Sociology of Health & Illness https://doi.org/10.1111/1467-9566.13019
Obstacles to use of patient expertise to improve care: a co-produced longitudinal study of the experiences of young people with sickle cell disease in non-specialist hospital settings
Miles, S; Renedo, A; Augustine, C; Ojeer, P; Willis, N; Marston, C.
In this paper, co-produced between academic researchers and people with lived experiences of sickle cell, we examine how young people with sickle cell disease try to use their expertise in their own condition during emergency hospital admissions and through encounters with non-specialist healthcare workers. Our qualitative research in England examined young people’s experiences of hospital encounters through repeat and one-off interviews. We show that young people’s expertise is sometimes undermined, including not being taken seriously when they report pain. They face barriers to care in non-specialist wards, particularly when they are alone with nobody to advocate for them. Although healthcare services encourage young people to take control of their health, in practice young people’s expertise is routinely ignored. To improve health service quality and young people’s needs, their own expertise must be better supported by healthcare providers.
2019
Critical Public Health. https://orcid.org/0000-0002-7370-7870
'Slow co-production' for deeper patient involvement in health care
Miles, S; Renedo, A; Marston, C.
In this paper we argue that in-depth qualitative research can be seen as a way to engage in ‘slow co-production’. Involving patients from the start and throughout a piece of research, and ensuring their voices are central, can help deepen patient involvement in healthcare. We use our qualitative research project This Sickle Cell Life as a study to demonstrate how working in depth with patients can generate detailed data for researchers and patient-centred knowledge that can help improve health services.
2018
The Journal of Health Design, 3 (1). pp. 57-62. ISSN 2206-785X DOI: https://doi.org/10.21853/JHD.2018.39
Participatory dissemination event
Stakeholders at the project dissemination event discuss strategies for transition