The Emotional Impact of a Cancer Diagnosis: A Qualitative Study of Adolescent and Young Adult Experience

Author:

Hughes Luke1,Taylor Rachel M.23ORCID,Beckett Angharad E.4ORCID,Lindner Oana C.5ORCID,Martin Adam6,McCulloch Joanne4,Morgan Sue7,Soanes Louise8,Uddin Rizwana5,Stark Dan P.5

Affiliation:

1. Cancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, London NW1 2PG, UK

2. Centre for Nurse, Midwife and AHP Led Research (CNMAR), University College London Hospitals NHS Foundation Trust, London NW1 2PG, UK

3. Department of Targeted Intervention, University College London, London WC1E 6BT, UK

4. School of Sociology and Social Policy, University of Leeds, Leeds LS2 9JT, UK

5. Leeds Institute of Medical Research, School of Medicine, University of Leeds, Leeds LS2 9JT, UK

6. Academic Unit of Health Economics, Leeds Institute of Health Sciences, University of Leeds, Leeds LS2 9JT, UK

7. Teenage and Young Adult Cancer Service, Leeds Teaching Hospitals NHS Foundation Trust, Leeds LS9 7TF, UK

8. Teenage Cancer Trust, London WC1V 7AA, UK

Abstract

The biographical disruption that occurs in adolescents and young adults following a cancer diagnosis can affect various important psychosocial domains including relationships with family and friends, sexual development, vocational and educational trajectories, and physical and emotional wellbeing. While there is evidence of the physical impact of cancer during this period, less is known about the impact on emotional wellbeing and especially on the barriers for young people accessing help and support. We aimed to obtain a more in-depth understanding of young people’s experiences of their diagnosis, treatment, psychological impact, and range of resources they could or wanted to access for their mental health. We conducted an in-depth qualitative study using semi-structured interviews with 43 young people who had developed cancer aged 16 to 39 years and were either within 6 months of diagnosis or 3–5 years after treatment had ended. Framework analysis identified three themes: the emotional impact of cancer (expressed through anxiety, anger, and fear of recurrence); personal barriers to support through avoidance; and support to improve mental health through mental health services or adolescent and young adult treatment teams. We showed the barriers young people have to access care, particularly participant avoidance of support. Interrupting this process to better support young people and provide them with flexible, adaptable, consistent, long-term psychological support has the potential to improve their quality of life and wellbeing.

Funder

Economic and Social Research Council

Publisher

MDPI AG

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