Data on the experiences, wishes, and needs of people living with incurable cancer

Results: Three main themes emerged from the interviews: 1) the daily experience of living with prolonged incurable cancer, marked by ongoing uncertainty and evolving challenges; 2) social and personal impact; and 3) coping strategies and meaning-making. While attempting to (re)integrate into their everyday environments and routines, participants reported unmet needs for psychosocial support and struggled with a lack of understanding from others.

Navigating these circumstances required considerable energy, which was often limited. Conclusion: People living with prolonged incurable cancer experience enormous disruptions to their well-being and face unique psychosocial challenges. They seek recognition and understanding and express a need for healthcare professionals to better address their ongoing support needs in facing a future filled with uncertainty.