"Keeping the Light On": A Qualitative Study on Hope Perceptions at the End of Life in Portuguese Family Dyads

Hope performs an important role in how patients and their families cope with suffering and stressful events. To better inform practice and theory on hope, palliative care research should include both patients and their family carers, given their strong interdependence. The aim of this study was to explore how hope is experienced in dyads formed by end-of-life patients and their family carers. In this qualitative study, data were collected by in-depth interviews with seven Portuguese family dyads. Analysis followed a thematic analysis approach. The analysis of the interviews shed light on the importance of hope for all participants, and the challenges involved. Family dyads noted several barriers and facilitators to perceptions of hope. Barriers to hope included limitations imposed by illness, feelings of anguish and helplessness, and poor communication with clinicians. Hope facilitators included supportive others, positive thinking and sense of humour, connection with nature, faith in religion and science, and a sense of compassion with others and altruism. Given the multidimensional scope of hope, the main challenge for family dyads is to look beyond the disease itself. Thus, palliative care teams should be encouraged to support and foster realistic hope, helping families prepare for death, in the context of advanced cancer.