Grieving thrice, suffering dually, becoming one : an interpretative phenomenological analysis of the end-of-life caregiving experience for persons with comorbid dementia and cancer

Abstract

Dying with comorbid dementia and cancer is a growing phenomenon with the ageing population worldwide. Family caregivers of persons with comorbid dementia and cancer (PwDnC) may face significant distress and unique challenges owing to the complexity of the intertwined conditions and immediacy of death. However, few studies pay attention to the end-of-life caregiving experience of this unique group of family caregivers. This study aims to understand and examine of the caregiving experience for PwDnC in their end-of-life from the perspective of family caregivers to explore the challenges and opportunities as experienced. An interpretative phenomenological study was undertaken. Twenty-one bereaved family caregivers of PwDnC were recruited from a palliative care unit in Hong Kong through purposive sampling after receiving ethical approval. Eighteen semi-structured interviews were conducted with the family caregiver alone or with a pair of primary and secondary caregivers. The interviews were then transcribed and analysed following the philosophical principles of interpretative phenomenological analysis. Two models are proposed by interpreting the findings in relation to existing knowledge and theoretical understanding. The 3-2-1 Model of Family Caregiving for PwDnC encapsulates the essential meaning of the phenomenon as a whole, and it is understood as “grieving thrice, suffering dually and becoming one”. The model is characterised by how family caregivers understood the meaning of togetherness after grieving losses from dementia through cancer to death and suffering dually with their loved ones. The 5U Model of Ambiguous Suffering denotes the challenges and opportunities experienced by family caregivers. Ambiguous suffering is identified as the overarching concept that connects the five superordinate themes: unprepared anticipated loss, uncontrollable worries, unhelpful support, unrequited vicarious suffering and unremembered perpetual togetherness. Ambiguous suffering is not present before the diagnosis of cancer but emerges in the context of comorbid dementia and cancer when the family caregivers interpreting and appraising their internal and external resources. These important findings fill the knowledge gap in the caregiving literature related to the end-of-life caregiving experience for PwDnC by developing new theoretical understandings of the meaning and process of caregiving. The findings also lay the foundation for the future development of appropriate policies and interventions to support family caregivers through a holistic approach.