EXPLORING THE EXPERIENCE OF TRANSITIONING TO PALLIATIVE CARE OF YOUNG ADULTS LIVING WITH METASTATIC/ADVANCED CANCER

Abstract

Background: A diagnosis of cancer for a person in young adulthood may come with distinctive challenges due to their stage of development. Palliative care is recommended to be delivered alongside cancer care for young adults living with metastatic/advanced cancers. However, research suggests that there are barriers regarding access to these services.

Aim: The overarching purpose of this dissertation was to gain insight into the experience of transitioning to palliative care services of young adults living with metastatic/advanced cancers through two interpretive qualitative studies informed by a scoping review.

Methodology: 1) The first was a community-based study that explored what cancer advocates can do to better support young adults (18-39 years of age) and their families through engaging in a tweet chat with 24 members of the #AYACSM community to explore their perspectives. Analysis was guided by a reflexive thematic analysis account. 2) The second study aimed to gain insights into the experience of what it is like for young adults living with metastatic/advanced cancers to engage in conversations about palliative care with their healthcare providers. A context-sensitive form of interpretive inquiry, phenomenology of practice, informed the design of this work. Interviews from seven research participants were analysed using reflective analytic methods.

Findings: 1) Four themes were articulated: advocate for advances in the delivery of care; support healthcare provider education; mobilize knowledge and share stories; and, leverage technology for advocacy efforts. 2) We may understand palliative care as a conversational opening not only to discuss additional support, but also to explore that which is meaningful for them as they live with serious illnesses. We may appreciate at the heart of these conversations are physical, relational, and existential needs that may be relieved by palliation. Significantly, these conversations afford personal reflections and frank discussions of dying and death.

Significance: A phenomenological understanding of palliative care conversations provides healthcare providers with reflective insights and practical considerations for approaching these important conversations with young people. Additionally, the perspectives of advocates highlighted how advocacy must span the continuum of cancer care from prevention to end-of-life, and the unique ways in which they can do so.