An exploration of stories of people who are end of life aged 16-24 years using narrative analysis

Stanway, Krystina (2024) An exploration of stories of people who are end of life aged 16-24 years using narrative analysis. Doctoral thesis (PhD), Manchester Metropolitan University.

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Abstract

Background: Evidence suggests that teenagers and young adults (TYA) present with a unique challenge for healthcare, in that they require services specific to their needs that do not fit with paediatric or adult services. They are at a key developmental stage for their cognitive, social, psychological, and emotional development which impacts on what they need, particularly when approaching end of life. TYAs live in a ‘computer-mediated society’, which is seen as a place where people construct themselves and others. The ‘internet’ use continues to increase and in 2020 72% reported an increase in their social media consumption and this is becoming intrinsically embedded in the lives of TYAs who are considered ‘social media natives. TYAs share their experiences of their cancer journey online, with the purpose of sharing information, seeking support, and leaving a legacy. Aim: This study aims to explore the life stories of young people who are dying of cancer before diagnosis and after diagnosis in order to further understand the impact of their diagnosis and treatment on their social well-being from the perspective of the young person experiencing it. Methodology: Social constructionism refers to illness as a social construct and is based on how people experience, understand, and live with illness. Stories are used to create meaningful constructs of the events that take place, and these can be shared on social media by TYAs. These stories or narratives can be analysed to support understanding of illness experiences from the perspective of those living with it. Methods: YouTube vlogs were used as data source and 6 participants identified from the UK that were eligible for this study. Narrative analysis was used to explore what was told, how I was told and what was the result of it being told. The analysis was based on Riessman and Franks approach of dialogical and performative narrative analysis, with a focus on the purpose of the narratives. Findings: The findings of this study outlined that TYAs’ narratives differ depending on their life experience and their current family and social dynamics. The complexities of supporting TYAs does appear unique to their age group; therefore, providing effective end of life care remain a challenge for services. The themes that were present in the data highlighted the importance of the sense of self which develops throughout the illness trajectory and changes between a sense of hope and hopelessness and the overwhelming desire to feel ‘normal’. TYAs appear to seek their self worth from their peers and through posting online. TYAs reported the significance of relationships with their family, friends, and partners to support them following diagnosis but also the value placed on their audience on social media that would comment on their posts, leading to the development of electronic intimacy between them and their followers and for some a dragonfly effect. Within the data there was imagery used in the forms of metaphors, with TYAs feeling that they should be ‘brave’ and ‘fight’ in line with social and cultural expectations and constructs placed on TYAs. Conclusions: This study highlighted how TYAs use social media to cope with their illness, seek relationship support and leave a legacy. This could be harnessed by health care professionals to develop interventions for TYAs that engage them through social media. In addition, this study has emphasised the potential of the role of Speech and Language Therapy working with TYAs at end of life, which requires further evidence base, guidance, and training to develop. To support with future studies utilising social media as a data source policy and procedures need to be developed for researchers to support them to navigate the ethics, practicalities, and analysis.