Edinburgh Napier University

  Introduction
Melanoma is one of the most common human malignancies. Yet, it is often thought of as a disease of adulthood rather than one affecting children and young people. Although melanoma is rare in children, the incidence is rising in adolescents and young adults. Despite improvements in survival rates for young people, there is no evidence around the experiences of young people and their family/significant of living with this disease.

Method
A qualitative study underpinned by Interpretive Phenomenological Analysis was conducted using a novel multiperspective design to explore the experiences of young people and their family/significant other living with malignant melanoma in Scotland. Five young people were purposively sampled from three Scottish National Health Service Boards based on the treatment location. Each young person and a nominated family member/significant other were interviewed (n=10) either individually (n=4) or as a dyad (n=6). Semi-structured interviews were conducted, and, with the participant’s consent, interview data were audio-recorded and transcribed verbatim and analysed. This identified key themes which were then clustered into four dominant super-ordinate themes and the findings distilled into an overarching metanarrative.

Findings
The metanarrative ‘Life Interrupted' was the core conceptual thread woven throughout the findings. It represents the interconnections and interrelationships between the four identified super-ordinate themes that encapsulated the experience of young people living with malignant melanoma and that of their family/significant other: (1) ‘Is it Serious’, (2) ‘Too Much too Young’, (3) ‘Not the Same’, and (4) ‘Time to Live’.

Conclusion
Being able to recognise and seek support in diagnosing malignant melanoma was challenging for young people and their families/significant other with limited physical, emotional or social support, often resulting in feelings of isolation. To overcome this lack of support and isolation, it is recommended that the care of young people and their families/significant other is seamless, and that clear links are established between services. Improvements to their journey can be made by focussing and addressing the experiences of young people and their family/significant other identified through this study.