Persaud, Nadine and Walshe, Catherine and Brearley, Sarah (2022) Exploring the experiences of hospice healthcare workers caring for adolescents and young adults with advanced cancer : An interpretative phenomenological analysis. PhD thesis, Lancaster University.
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Abstract
Title Exploring the Experiences of Hospice Healthcare Workers Caring for Adolescents and Young Adults with Advanced Cancer: An Interpretative Phenomenological Analysis Background and aim Adolescents and young adults living with advanced cancer are a distinct population who require specialised care from healthcare workers. A thematic synthesis was conducted to conceptualise better the emotional experiences of healthcare workers who care for children and young adults living with life-limiting illnesses. The thematic synthesis resulted in eight descriptive themes and three analytic themes and highlighted that little is known about the experiences of hospice healthcare workers who care for adolescents and young adults. The aim of this study is to understand the lived experience of hospice healthcare workers who provide palliative care to adolescents and young adults living with advanced cancer. Methods This study was underpinned by interpretivism and constructivism. An interpretative phenomenological analysis was adopted, and phenomenology, hermeneutics, and idiography informed this methodology. Hospice healthcare workers from four paediatric hospices across Canada were recruited through purposive sampling. Semi-structured in-person interviews took place, and all interviews were transcribed verbatim. Interpretative phenomenological analysis was used to analyse all of the data. Findings Eighteen hospice healthcare workers participated. Two superordinate themes were generated – first, balancing on the tightrope of uncertainty and second, acting as a proxy. The superordinate theme, balancing on a tight and rope, the subordinate themes were related to healthcare workers doing their best and being heroes, with an emphasis on uncertainty and the fear of failure. This theme also focused on the role that time does not play in the development of attachments and the role that healthcare workers play in decision-making. There was a focus on healthcare workers taking the path of least regret while sometimes having to be uncomfortable with the decision being made. Within the second superordinate theme, acting as a proxy, the subordinate themes were focused on the importance of having honest and transparent conversations and the cycle of protection between adolescents and young adults, families, and healthcare providers. This theme also highlights the role that hope plays when caring for this population. The experiences of adolescents and young adults dying in a hospice versus a hospital are also discussed. Conclusion Within the subordinate themes there is a need for, or call to, action. The themes within this study demonstrate this action-focused orientation: the need to do and the need to protect. Through this notion of doing and protecting, the hope for a good death, an exploration of decision making and building relationships, understanding the transitional hero narrative and advance care planning is imperative when supporting adolescents and young adults.