What Adolescents and Young Adults Want Health Professionals to Know

  • Jeanette HawkinsEmail author


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.

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 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


  1. 1.
    Belpame N, Kars MC, Beekman D, et al. The AYA director: a synthesized concept to understand psychosocial experiences of adolescents and young adults with cancer. Cancer Nurs. 2016;39(4):292–302.CrossRefPubMedGoogle Scholar
  2. 2.
    Hedström M, Skolin I, von Essen L. Distressing and positive experiences and important aspects of care for adolescents treated for cancer. Eur J Oncol Nurs. 2004;8:6–17.CrossRefPubMedGoogle Scholar
  3. 3.
    CLIC Sargent. Best chance from the start: improving support to identify cancer in children and young people. 2016. Accessed 15 Jan 2017.
  4. 4.
    Gibson F, Pearce S. Eden T et al. Young people describe their prediagnosis cancer experience Psycho-oncology. 2013;22:2585–92.PubMedGoogle Scholar
  5. 5.
    CLIC Sargent. Coping with cancer: supporting young people’s resilience. 2014. Accessed 15 Jan 2017.
  6. 6.
    Keim-Malpass J, Steeves RH. Talking with death at a diner Young women’s online narratives of cancer. Oncol Nurs Forum. 2012;39(4):373–406.CrossRefPubMedGoogle Scholar
  7. 7.
    Teenage Cancer Trust 2014 Cancer Warning Signs. Accessed 15 Jan 2017.
  8. 8.
    Crawshaw MA, Glaser AW, Hale JP, Sloper P. Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and young adult years. Eur J Cancer Care. 2009;18:381–90.CrossRefGoogle Scholar
  9. 9.
    Brassil KJ, et al. Exploring the cancer experiences of young adults in the context of stem cell transplant. Cancer Nurs. 2015;38(4):260–9.CrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    Coelho P. Veronika Decides to Die. 2000th ed. London: Harper Collins; 1998.Google Scholar
  11. 11.
    Hauken M, Larsen T, Holsen I. Meeting Reality: Young adult cancer survivors’ Experiences of re-entering everyday life after cancer treatment. Cancer Nurs. 2013;36(5):17–26.CrossRefGoogle Scholar
  12. 12.
    Keim-Melpass J, Stegenga K, Loudin B, Kennedy C, Kools S. “It’s back! My remission is over”: Online communication of disease progression among adolescents with cancer. J Pediatr Oncol Nurs. 2016;33(3):209–17.CrossRefGoogle Scholar
  13. 13.
    Stegenga K, Macpherson CF. I’m a survivor, go study that word and you’ll see my name. Cancer Nurs. 2014;37(6):418–28.CrossRefPubMedGoogle Scholar
  14. 14.
    Bluebond-Langner M. The private worlds of dying children. In: Hanks G, Cherney N, Christakis N, Fallon M, Kaasa S, Portenoy R, editors. Oxford textbook of palliative medicine. 4th ed. Oxford: Oxford University Press; 1978. p. 1355.Google Scholar
  15. 15.
    Woodgate R, West C, Tailor K. Existential anxiety and growth: an exploration of computerized drawings and perspectives of children and adolescents with cancer. Cancer Nurs. 2014;37(2):146–59.CrossRefPubMedGoogle Scholar
  16. 16.
    Davies J, Kelly D, Hannigan N. Autonomy and dependence: a discussion paper on decision-making in teenagers and young adults undergoing cancer treatment. J Adv Nurs. 2015;71(9):2031–40.CrossRefPubMedGoogle Scholar
  17. 17.
    Anderzén-Carlsson A, Sörlie V, Kihlgres A. Dealing with fear – from the perspective of adolescent girls with cancer. Eur J Oncol Nurs. 2012;16:286–92.CrossRefPubMedGoogle Scholar
  18. 18.
    Lehmann V, Grönqvist H, Engvall G, Ander M, Tuinman M, Hagedoorn M, Sanderman ME, von Essen L. Negative and positive consequences of adolescent cancer 10 years after diagnosis: an interview-based longitudinal study in Sweden. Psycho-Oncology. 2014;23:1129–235.CrossRefGoogle Scholar
  19. 19.
    Redkite. Redkite music therapists. 2015. Accessed 15 Jan 2017.
  20. 20.
    Speraw S. “Talk to me –I’m human”: The story of a girl, her personhood, and the failures of healthcare. Qual Health Res. 2009;19(6):732–43.CrossRefPubMedGoogle Scholar
  21. 21.
    Sposito A, Silva-Rodrigues F, Sparapani V, et al. Coping strategies used by hospitalized children with cancer undergoing chemotherapy. Journal of Nursing Scholarship Brazil. 2015;47(2):143–51.CrossRefGoogle Scholar
  22. 22.
    Juth V, Cohen-Silver R, Sender L. The shared experience of adolescent an young adult cancer patients and their caregivers. Psycho-Oncology. 2015;24:1746–53.CrossRefPubMedPubMedCentralGoogle Scholar
  23. 23.
    Tsangaris E, Johnson J, Taylor R, Fern L, Bryant-Lukosius D, Barr R, Fraser G, Klassen A. Identifying the supportive care needs of adolescent and young adult survivors of cancer: a qualitative analysis and systematic review. Support Care Cancer. 2014;22:947–59.CrossRefPubMedGoogle Scholar
  24. 24.
    Docherty SL, Kayle M, Maslow GR, Santacroce SJ. The adolescent and young adult with cancer. A developmental life course perspective. Seminars in :Oncology Nursing. 2015;31(3):186–96.Google Scholar
  25. 25.
    Lauer AL. Treatment of anxiety and depression in adolescents and young adults with cancer. Journal of Paediatrics Oncology Nursing. 2015;32(5):278–83.CrossRefGoogle Scholar
  26. 26.
    DeRouen MC, Smith AW, Tao L, et al. Cancer-related information needs and cancer’s impact on control over life influence health-related quality of life among adolescents and young adults with cancer. Psycho-Oncology. 2015;24:1104–15.CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Lee M-Y, Mu P-F, Tsay S-F, Chou S-S, Chen Y-C, Wong T-T. Body image of children and adolescents with cancer: a metasynthesis on qualitative research findings. Nurs Health Sci. 2012;14:381–90.CrossRefPubMedGoogle Scholar
  28. 28.
    CLIC Sargent. Relationships and sex. 2015. Accessed 15 Jan 2017.
  29. 29.
    CLIC Sargent. Cancer and fertility. 2016. Accessed 15 Jan 2017.
  30. 30.
    Quinn GP, Huang IC, Murphy D, Zidonik-Eddelton K, Krull KR. Missing content from health-related quality of life instruments: interviews with young adult survivors of childhood cancer. Qual Life Res. 2013;22:111–8.CrossRefPubMedPubMedCentralGoogle Scholar
  31. 31.
    Insley E, Streich L. The new normal (executive summary) In: The new normal; evaluation of the social care service for young people. 2015. Accessed Aug 2016.
  32. 32.
    CLIC Sargent. Impact of cancer on a child’s world. 2010. Last accessed 15 Jan 17.
  33. 33.
    CLIC Sargent. No young person with cancer left out. 2013. Last accessed 15 Jan 17.
  34. 34.
    Kim B, Gillham D. The experience of young adult cancer patients described through online narratives. Cancer Nurs. 2013;36(5):377–84.CrossRefPubMedGoogle Scholar
  35. 35.
    Wakefield C, McLoone J, Butow P, et al. Support after the completion of cancer treatment: perspectives of Australian adolescents and their families. Eur J Cancer Care. 2013;22:530–9.CrossRefGoogle Scholar
  36. 36.
    Easley J, Miedema B, Robinson L. It’s the “good” cancer, so who cares? Perceived lack of support among young thyroid cancer survivors. Oncol Nurs Forum. 2013;40(6):596–600.CrossRefPubMedGoogle Scholar
  37. 37.
    Hamre H, Zeller B, Kanellopolous A, Kiserud CE, Aakhus S, Lund M, Loge JH, Fossa SD, Ruud E. High prevalence of chronic fatigue in adult long-term survivors of acute lymphoblastic leukaemia and lymphoma during childhood and adolescence. Journal of adolescent and young adult oncology. 2013;2(1):2–9.CrossRefGoogle Scholar
  38. 38.
    Scott K. Give me time to heal. Nurs Stand. 2008;23(9):61.CrossRefGoogle Scholar
  39. 39.
    Taylor N, Absolom K, Snowden J, Eiser C. Need for psychological follow-up among young adult survivors of childhood cancer European. J Cancer. 2012;21:52–8.Google Scholar
  40. 40.
    Hobbie WL, Stuber M, Meeske K, Wissler K, Rourke MT, Ruccione K, Hinkle A, Kazak AE. Symptoms of posttraumatic stress in young adult survivors of childhood cancer. J Clin Oncol. 2000;18(24):4060–6.CrossRefPubMedGoogle Scholar
  41. 41.
    McDonnell G, Baily C, Schuler T, Verdeli H. Anxiety among adolescent survivors of paediatric cancer: a missing link in the survivorship literature. Palliat Support Care. 2015;13:345–9.CrossRefPubMedGoogle Scholar
  42. 42.
    Zebrack B, Kwak M, Salsman J, Cousino M, Meeske K, Aguilar C, Embry L, Block R, Hayes-Lattin B, Cole S. The relationship between posttraumatic stress and posttraumatic growth amongst adolescent and young adult (AYA) cancer. Psycho-Oncology. 2015;24:162–8.CrossRefPubMedGoogle Scholar
  43. 43.
    Wollington T. “Time” in I’m still running: selected poems by adolescent with cancer. Privately Published. 1980.Google Scholar
  44. 44.
    McClellan W, Klemp J, Krebill H, et al. Understanding the functional late effects and information needs of adult survivors of childhood cancer. Oncol Nurs Forum. 2013;40(3):254–61.CrossRefPubMedPubMedCentralGoogle Scholar
  45. 45.
    CLIC Sargent. What about money. 2016. Accessed 15 January 2017.
  46. 46.
    Kippen R. Stand up for me and be brave: what young people want from social workers the Guardian social care network: social life blog. 2016. Accessed 9 July 2016.
  47. 47.
    Spinetta J. Conference lectures. Psychological late effects: the myths of surviving childhood cancer. Late effects conference. Manchester, UK. May 1993. 1993.Google Scholar

Copyright information

© Springer International Publishing AG 2018

Authors and Affiliations


Personalised recommendations