Patterns of shared meaning across personal narratives surrounding experiences with palliative care, serious illness, and the end of life

Abstract

Prior observations of persistent public misconceptions and negative beliefs surrounding palliative care have led to extensive calls for public education on palliative care. Yet, the development of effective initiatives to improve public perceptions of palliative care is still hindered by a lack of research providing a deeper, contextualized understanding of the way people perceive and give meaning to palliative care. This study therefore set out to explore patterns of shared meaning across personal narratives surrounding experiences with palliative care, serious illness, and the end of life. These narratives were collected during a broad public engagement initiative on palliative care in Flanders, Belgium which included a call to share personal stories surrounding palliative care (which 72 persons did) as well as a Citizens' Forum in which 24 persons engaged in live conversations on palliative care. Reflexive thematic analysis was used to analyze the personal narratives and yielded four axes of meaning: 1) ‘Sense of Support’, describing feeling supported or abandoned on multiple levels with key elements of open and empathetic communication, being informed and listened to; 2) ‘Being-in-Time’, incorporating a renewed sense of temporality and the weight of uncertain prognosis; 3) ‘Constituting a Sense of Self while Coping with Life-Threatening Illness’, involving concerns surrounding role adjustments and posthumous reputation; and 4) ‘Going Through the Process of Dying’, unique to bereaved individuals' narratives, highlighting the importance of being informed during the dying process and honoring the wishes of the dying person. Together, these axes illuminate how both positive and stigmatized views on palliative care are shaped by broader patterns of meaning attribution, deeply ingrained in personal and social contexts. The identified narrative elements can play a crucial role in improving the content, reach, and impact of future public communication and education on palliative care, effectively enhancing public receptivity and engagement.