April 7-9, 2022 • Hyatt Regency • Lexington, KY
Communication Strategies to Promote Comprehensive Well-being
Communication Strategies to Promote Comprehensive Well-being
Abstract: Tales of Love’s Perseverance: Family Bereavement Stories as Means to Investigating Impacts of End-of-Life Care on Sense-Making
End-of-life care and death experiences have important implications on the meaning-making and communication of bereaved family members, particularly in the face of barriers to formal healthcare services. Through the lens of Communicated Narrative Sense-Making Theory (CNSM, Koenig Kellas, 2018), this study provided a space for 25 bereaved family members to tell their stories of terminal illness and grief. The present study is the second branch of analysis of data; in the author's original study, stories were first analyzed through narrative thematic analysis (Riessman, 2008) and organized into a working bereavement story framework oriented around time: stories of Past, Present, and Future enabled participants to make meaning of their family member’s illness and death. Importantly, these stories reflected what was important to participants in their bereavement, such as honoring their loved one’s legacy, time spent together, and/or helping others. The current study utilized this bereavement narratives framework to conduct a cross-case data analysis (Miles, Huberman, & Saldana, 2014) in order to further explore implications of inequity in formal end-of-life care services (i.e., palliative care and/or hospice) on narrative sense-making. Findings indicated that access to and utilization of end-of-life care impacted the ways in which families framed their stories as Past, Present, or Future. Specifically, patterns in the cross-case data matrix related to a continuum of communication experiences and strategies families engaged in throughout the end-of-life and into bereavement, including reflections on silence, undulations of information, comfort with care, and support from beyond. This connection between the bereavement stories of participants and end-of-life care demonstrated potential impact of health equity work in end-of-life care, particularly on the significant need to make sense of loss and grief. Access to and quality of formal end-of-life services such as palliative and hospice care may be important factors for facilitating coping for individuals and families alike, within and beyond formal organizations. Opportunities for translating these findings in order to support individuals and communities experiencing the challenges of terminal illness and bereavement are discussed, with a particular focus on the need to address structural barriers at the heart of inaccess to support resources.