How Advocates Can Support Young Adults Living With Cancer and Their Transition to Palliative Care.

Abstract

While the cancer advocacy community has been pivotal in progressing oncology care, supporting young adults with advanced cancer transitioning to palliative care continues to be a complex challenge. Palliative care services may not be offered by healthcare providers or engaged by young people themselves. This is in the face of the recognized value that palliative care can provide young people and their families. The purpose of this study was to explore what cancer advocates can do to support young adults (18-39 years of age) with advanced cancer in their transition to palliative care. A community-based research perspective supported engagement with members of the #AYACSM (Adolescent and Young Adult Cancer Societal Movement) from the United States and Canada through social media. Analysis was guided by a reflexive thematic analysis approach to articulate four action-oriented themes: advocate for advances in the delivery of care; support healthcare provider education; mobilize knowledge and share stories; and leverage technology for advocacy efforts. Young adult cancer advocacy must span the continuum of cancer care from prevention to end-of-life. There exist gaps in advocacy efforts surrounding support for young people in their transition to and the integration of palliative care services. Creative and innovative advocacy approaches are needed. This study also showed opportunities for conducting qualitative research through an existing online community as an approach conducive to community-based research.