The “lost tribe” reconsidered
15th May 2018
The “Lost Tribe” reconsidered: teenagers and young adults with cancer
Research has been published in the European Journal of Oncology Nursing investigating young people’s views of their experience of having cancer treatment in an adult setting. The majority of teenagers and young adults are treated in their local hospital or at a cancer centre alongside adults of all ages. But the researchers found that for teenagers and young people with cancer this led to a negative experience. Inappropriate cancer care during the formative adolescent years can have a profound and lifelong impact.
Approximately 2,400 adolescents and young people (aged 15 – 24 years) are diagnosed with malignancy in the UK each year. Cancer is the leading cause of death from disease amongst this age group. Teenagers and young people generally have a worse prognosis when compared to children or older adults.
Research findings
The study found that teenagers and young adults treated for cancer have special needs that are not being provided for, either in paediatric or adult units. The overriding finding from the interviews was that participants felt completely out of place in the adult setting. In fact there were no confounding voices within the data and the experience of the participants was almost entirely negative.
Despite having cancer and treatment in common, participants did not feel a sense of shared experience with older cancer patients. Participants perceived older people as having a different perspective on cancer which impacted on their ability to feel any affinity with their fellow patients.
Even though we were all cancer patients or we were all kind of in the same boat it felt very different and their needs were completely different to mine, that was the main problem – I didn’t need to call the nurse to help me go to the toilet, I could do it myself. I was mobile ..
Participants felt they did not have the adult life-skills to cope with being in an adult ward and were frightened by the experience.
The person in the bed next to me on my second night in hospital went into cardiac arrest and died – it was my first stay in hospital, I’d never been in a hospital for anything before that … ..
The adult care setting was generally perceived by participants to be a lonely environment for young people to have cancer treatments. Many adult centres had poor wi-fi access, impacting on contact with friends and family through social media, and creating a sense of isolation.
I don’t think anyone really sort of understood me like in terms of the staff because – sometimes I’d just like cry or whatever and they’d just sort of go and leave me or wouldn’t really talk to me or anything and I think they felt quite awkward or something …
Improving appropriate cancer care during the formative adolescent years can have a profound and lifelong impact. Teenagers and young people often felt that cancer had happened at the wrong time of their life and they were more determined to combat it. The shared experience of cancer was negated by the different meaning attributed to cancer by patients at different life stages.
Researchers conclude that this group of patients have very different needs from older patients and that staff working with this group should adapt their approach when working with this age group.
Marshall S, Grinyer A, Limmer M. The lost tribe reconsidered: Teenagers and young adults treated for cancer in adult settings in the UK. European Journal of Oncology Nursing 33 (2018) 85-90