What Adolescents and Young Adults Want Health Professionals to Know
This chapter aims to give a voice to adolescents and young adults (AYA) experiencing cancer care in the second decade of the twenty-first century and to present practical advice for healthcare professionals. If we don’t listen to AYAs life stories we will be unable to create an environment of care that meets their needs. Development of the chapter began with conversations with young people through the CLIC SARGENT network (the UK’s leading charity for children and young people with cancer, and their families). This enabled focus groups with the Young People’s Reference Group (YPRG), two hospital based groups, and individual telephone conversations (n = 21 total participants). Additional anonymised interview and survey results were also included from Redkite (Australian cancer charity providing essential support to children and young people with cancer, and the family and support network who care for them). Following several rounds of conversations three main themes emerged. The chapter is structured around these themes exploring first what AYA want to tell us, and then integrating these messages with findings in published literature.
The three themes forming the chapter sections are;
This is what I want to tell you about being diagnosed with cancer
This is what I want to tell you about day to day living with and beyond cancer
This is what I want to tell you about your interactions with me.
Each section concludes with practical tips that AYA want health professionals to know.
All the young people supported by CLIC Sargent or Redkite who offered their thoughts and experiences freely to inform this chapter. In particular the Young People’s Reference Group, the Participation Team & Rachel Blackford. http://www.clicsargent.org.uk/
Simon Darby (social worker) who introduced me to the Arts Project in Northern Ireland “Hello, my name is not cancer.”
Laura Monaghan for contributing her thumbprint “Countdown” from the Northern Ireland Arts Project
Alana McCrea for contributing her thumbprint “My life was great before cancer.” from the Northern Ireland Arts Project
Shona McDowell (social worker) who introduced me to Holly’s art.
Holly Hamer for contributing her art work ‘Shock of diagnosis’ and ‘Watching from the sidelines.’
Sam Collins (social worker) who supported two focus groups and introduced me to Aimee’s photography.
Aimee Jordan for contributing her Photography ‘Individuality’
Kailly Woodroffe at http://www.redkite.org.au/ who linked the themes of the chapter with practice in Australia and Redkite research
The CLIC Sargent Research and Policy Team for support with research.
The literature search strategy was developed by Royal College of Nursing Library and Heritage Centre (UK), with grateful thanks to the RCN Library staff for their support. The Royal College of Nursing Library and Heritage Centre
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