RPD222 - Enduring grief after cancer: Global findings from bereaved families in the WHO Lived Experience of Cancer study

Key Message : In this global study of bereaved family members, rates of emotional challenges and Probable Prolonged Grief Disorder appeared high, though many participants did not complete all measures. These findings underscore grief after cancer-related death as a public-health concern, highlighting the need for accessible palliative care services and psychosocial support worldwide.

Abstract:

Background: Bereavement following a cancer-related death profoundly affects families, yet global evidence on grief and its relationship with end-of-life care experiences remains limited. This WHO-supported study examined emotional challenges, grief symptoms, and perceptions of care among bereaved family members across high-, middle-, and low-income countries.

Methods: The WHO Lived Experience of Cancer survey was disseminated in 120 countries in 25 languages(1). Participants answered questions about their bereavement experiences, access to palliative care services and advance-care planning, and emotional challenges such as depression, anxiety, adjustment difficulties since the death (‘yes’/’‘no’). Probable Prolonged Grief Disorder (PPGD) was identified according to the PG-13-R scoring guidelines, requiring endorsement of core symptoms, functional impairment, and bereavement duration >12 months. Open-ended responses explored participants’ greatest emotional challenges since the death.

Results: 316 participants answered questions about their bereavement experiences (86% female; 74% in high-income countries; 34% were parents whose child died from cancer). The most prevalent self-reported emotional challenges were adjustment difficulties (59%), depression (55%), and post-traumatic stress symptoms (38%). Among the 108 participants who provided complete PG-13-R data, the mean score was 33.7 (SD:10.8; bereaved parents: 35.1; others: 32.5), and 37% met criteria for PPGD. Qualitative responses revealed recurring themes of enduring loneliness, guilt, anger, and identity disruption. Participants from LMICs shared distress over resource shortages and the emotional toll of witnessing preventable suffering. Bereaved parents highlighted experiences of emotional isolation, difficulty communicating their grief with others, and the challenge of sustaining hope while caring for their surviving children.

Conclusions: Participants reported enduring emotional distress following family members’ cancer-related deaths. Reported PG-13-R scores and PPGD rate appear higher than those typically reported in cancer-bereaved populations, although these findings may reflect our non-representative sample and incomplete data. Strengthening equitable access to palliative and bereavement-informed care is vital in promoting long-term family wellbeing and quality of life.

References: (1) Cayrol J, Wakefield, CE, Ilbawi, A, et. al. The lived experience of people affected by cancer: A global cross-sectional survey protocol. Plos one 2024; 19(2):e0294492.