Gendered Re-Traumatization: End-of-Life Care for Abusive and Neglectful Parents (SCI907)

Abstract

1.Describe re-traumatizing experiences of women providing EOL UCL to parents which mirror experiences of childhood trauma.2.Identify predictive and protective factors for gendered re-traumatization in the context of EOL UCL for parents.3.Examine structures of power in hospice and palliative care which perpetuate gendered re-traumatization. During the last year of life, 57% of Medicare beneficiaries depend on their daughters’ unpaid care labor (UCL) to meet their basic needs. End-of-life (EOL) UCL is associated with increased risks for physical and psychological morbidity, and negative health impacts of UCL are more common among providers with histories of childhood maltreatment. Over 40% of U.S. women report having experienced childhood sexual, physical, emotional abuse and / or neglect, with the majority of cases involving parents, yet the prevalence and impact of childhood trauma is rarely acknowledged in the field of hospice and palliative care. In contrast to the evidence, the assumption that love and reciprocity characterize relationships between daughters and parents to whom they provide care is widespread in research, policy, and practice. The objective of this study was to explore and conceptualize links between the experience of providing EOL UCL to abusive and neglectful parents and women's health. Using feminist poststructuralist narrative methodology, we performed and analyzed dialogic interviews with 21 women who provided EOL UCL to parents who maltreated them in childhood and 15 healthcare professionals who serve EOL UCL providers. EOL UCL represents a re-traumatization for many women, resulting in avoidable injury, illness, and complicated grief, impeding recovery, and increasing vulnerability to victimization. During EOL UCL, participants were subjected to isolation, domination, deprivation, betrayal, and identity assault mirroring their childhood traumas. In childhood and in EOL UCL, structures of power perpetuated patriarchal norms of family and femininity, constraining participants’ capacities for self-expression, self-esteem, and self-direction. Our analysis also uncovered factors which predicted or protected against gendered re-traumatization. The findings of this study challenge taken-for-granted ideologies in hospice and palliative care which harm marginalized women.