Silent wounds: violence and adverse experiences in parents caring for terminally ill children in palliative care

BACKGROUND: Primary caregivers of paediatric palliative care patients-mostly women-are disproportionately exposed to adverse events and violence, both directly related to the experience of disease and to other stressful life events. These experiences have been associated with a higher risk of psychopathology, which in turn impacts the children under their care. The purpose of this study was to describe the experiences of violence among primary caregivers of palliative care patients in a children's hospital in Mexico City and to analyse how these experiences affect their caregiving capacity. METHODS: A qualitative study was conducted in which narratives were reconstructed from semi-structured interviews with primary caregivers, non-participant observations, and hospital documentation. Caregivers from 21 families with a child receiving palliative care participated in the study. Data analysis was performed using Atlas.ti software, with further triangulation between researchers and a multidisciplinary team of health professionals. RESULTS: Most caregivers narrated multiple and diverse experiences of violence across the lifespan, interwoven with intergenerational impacts. Experiences of violence were categorized into four groups: adverse childhood experiences, stressful life events in adulthood, onset of disease in the child, and consequences of disease. Violence was frequent among participants, and exposure to constant stressful life events had a negative impact on their ability to cope with adverse experiences, including the child's illness. CONCLUSIONS: Recognizing and addressing the violence experienced by female caregivers is essential to paediatric palliative care practice. Prevention of re-traumatization and vicarious trauma among patients, families, and providers is needed to improve therapeutic interactions. Individualized interventions for survivors of violence could reduce the burden of disease on caregivers and disrupt intergenerational cycles of violence.