Life Interrupted: Experiences of adolescents, young adults and their family living with malignant melanoma

Abstract

Aim Melanoma is one of the most common human malignancies; yet, it is often thought of as a disease of adulthood rather than one affecting adolescents and young adults. This study sought to understand the experiences of adolescents, young adults and their family living with malignant melanoma. Design A qualitative study using Interpretive Phenomenological Analysis, through a multi-perspective design. Methods Data collection was conducted between January and August 2018 in each participant's Primary Care Centre when they were attending for an outpatient appointment. Each young person and a nominated family member were interviewed (n = 10) either individually (n = 4) or as a dyad (n = 6) according to their personal choice. In-depth semi-structured interviews were conducted and audio-recorded with the participant's consent. Interview data were transcribed verbatim and analysed. Findings The metanarrative ‘Life Interrupted’ was the core conceptual thread woven throughout the findings. It represents the interconnections and interrelationships between the adolescent or young adult and their family. Being able to recognize the disease and seek support was challenging with often limited physical, emotional or social support resulting in feelings of fear and isolation. Four super-ordinate themes were identified: (a) ‘Is it Serious’, (b) ‘Too Much too Young’, (c) ‘Not the Same’ and (d) ‘Time to Live’. Conclusions With the rising incidence of MM in the adolescents and young adults population globally, there are demands to improve healthcare professionals and nurse's knowledge and understanding of MM. As young people with MM experience their journey outside specialist cancer services, the care delivery for this patient group and their families require stronger links between services. Impact This study will inform the improvement of care delivery for MM in order that this patient group is provided with the same access to service delivery as other adolescents and young adults with cancer.