‘It's Skin Cancer’… a Rollercoaster of a Journey for Teenagers, Young People and Their Significant Other

TL;DR

This study explores the emotional journey of young people with melanoma and their loved ones, highlighting the lack of age-appropriate care and the rollercoaster experience of diagnosis and treatment.

Contribution

The study provides a novel interpretive phenomenological analysis of young people's lived experiences with melanoma and their significant others in England.

Findings

Young people with melanoma often experience a 'rollercoaster' of emotions without adequate age-appropriate care.

Four key themes emerged: uncertainty, sudden seriousness, isolation, and finding a place in the care system.

Most young people received care in adult cancer centers, which was not tailored to their specific needs.

Abstract

To explore the lived experience of young people aged 16–24 years diagnosed with melanoma and that of their significant other in England.

Interpretive phenomenological analysis.

Data were collected between August 2023 and January 2024 from one specialist cancer centre in England. Thirteen young people were approached, and 10 took part. Each young person was asked to nominate a significant other. Five nominated a significant other, and five nominated no one. Although interviews were offered face‐to‐face, virtual was the preferred method. In‐depth semi‐structured interviews were audio‐recorded with the participant's consent. Interview data were transcribed verbatim and analysed.

The core conceptual thread woven throughout the findings was ‘It's like being on a rollercoaster,’ which is representative of the ups and downs of the treatment trajectory, often without the support of age‐appropriate specialist care. Four superordinate themes were identified: ‘Is something wrong?’, ‘Suddenly it's serious’, ‘Out on a limb’ and ‘Finding our place’.

Although most young people were treated in a primary treatment centre for adults with cancer, their experience was challenging from route to diagnosis through their treatment and beyond. Few received age‐appropriate care to support their physical, emotional, and social wellbeing to help them navigate the experience.

There is limited evidence exploring the experiences of teenagers and young adults living with melanoma or that of their significant other. This enriched understanding supports improvement of the care pathway and service delivery for these young people and their families.

One young person with lived experience was paid as a consultant to be part of the research team. He helped develop the grant application and research questions, data analysis, and writing this paper.

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