The Growing Up with Cancer (GUWC) project used mixed methods research to examine the nature and impact of cancer illness and treatment on the experience of growing up through adolescence and young adulthood.
We conducted interviews with 15 women and 12 men aged 16–29 years who, between the ages of 10 and 22, had been diagnosed with a variety of cancers and haematological malignancies. The interview was about life before cancer and the impact of having cancer on their psychological, emotional, and social lives.
… it’s not until you’ve been through something like this that your outlook on life changes. (George, 29 years old)
Our major finding from the interviews was that cancer has an enormous impact upon young people – transforming forever who they are. It is also immensely disruptive to young people’s lives and relationships. But it is a mistake to see cancer simply as a ‘focal’, specific disruption to linear, progressive transitions from childhood to adulthood. For cancer is a complex social, relational, interpersonal, and continuing influence that creates both difference and the necessity for accommodation. Because the changes associated with cancer illness, treatment, and survival may persist for months or years, or be life-long, young people and their parents, peers, and romantic partners must negotiate together how to accommodate the ongoing effects of cancer into their daily lives.
When I do go for blood tests I do talk to [my husband] about it. I just tell him that I’m scared of what’s going to happen and he always just says, “Don’t go thinking that you’ve got [cancer] now when you haven’t got your test results back.” He says, “We’ll just deal with it when it happens and if it happens.” But I know, he’s told me it scares him to think about it as well. He’s told me that. He does get scared, he just doesn’t show it the same way I do. (Erin, 24 years old)
We invited all the participants to work with an artist or on their own to create a self-portrait representing their experience of growing up with cancer; 19 young people completed self-portraits. These young people were interviewed again about the experience of creating a self-portrait and any further thoughts they’d had about their cancer experiences. Participation in the research and self-portrait process could be thought provoking:
I’m kind of looking back at where I was and I’m in this phase of change and re-assessment of myself. ‘Cause I always thought I knew myself and like with the cancer and stuff and I knew how it fitted into who I am but after I did that interview with you, I’m like, “Oh wow, do I really know?” (Mahalya, 22 years old)
Read more about the Growing Up with Cancer project:
- Lewis, P. (2012). Growing up with cancer: A qualitative study of the impact of cancer on the experience of growing up. PhD Thesis. University of Sydney, Sydney
- Growing Up with Cancer: Self-portraits by young people growing up with cancer. (2012). Exhibition Catalogue. Centre for Values, Ethics and the Law in Medicine, University of Sydney, Sydney. ISBN: 978 1 74210 290 0
- Lewis, P, Mooney-Somers, J, Jordens, C, and Kerridge, I (2011) Using Innovative Methods to help Young People reflect on the Meaning of Growing up with Cancer. In Deng, M, Raia, Federico and Vaccarella, Maria (eds) Relational Concepts in Medicine. Inter-Disciplinary Press, Oxford. ISBN: 978-1-84888-073-3