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Research output: Thesis › Doctoral Thesis
Research output: Thesis › Doctoral Thesis
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TY - BOOK
T1 - Exploring the experiences of hospice healthcare workers caring for adolescents and young adults with advanced cancer
T2 - An interpretative phenomenological analysis
AU - Persaud, Nadine
PY - 2022
Y1 - 2022
N2 - TitleExploring the Experiences of Hospice Healthcare Workers Caring for Adolescents and Young Adults with Advanced Cancer: An Interpretative Phenomenological AnalysisBackground and aimAdolescents 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.MethodsThis 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 fourpaediatric 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.FindingsEighteen 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.ConclusionWithin 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 toprotect. 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.
AB - TitleExploring the Experiences of Hospice Healthcare Workers Caring for Adolescents and Young Adults with Advanced Cancer: An Interpretative Phenomenological AnalysisBackground and aimAdolescents 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.MethodsThis 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 fourpaediatric 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.FindingsEighteen 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.ConclusionWithin 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 toprotect. 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.
KW - hospice, palliative care, adolescents and young adults, paediatric palliative care, end of life care,
U2 - 10.17635/lancaster/thesis/1809
DO - 10.17635/lancaster/thesis/1809
M3 - Doctoral Thesis
PB - Lancaster University
ER -