Understanding parental trauma in caring for children with down syndrome within LSEN school settings

Parents raising children with Down syndrome (DS) encounter multifaceted adversities that may precipitate trauma responses, yet the intersection of caregiving, systemic barriers, and trauma remains underexplored in low-resourced educational contexts.

This study examined the nature, sources, and manifestations of parental trauma among caregivers of children with DS enrolled in Learners with Special Educational Needs (LSEN) schools in Johannesburg, South Africa.

Using an interpretative phenomenological design, semi-structured interviews and a focus group were conducted with eight purposively selected parents (seven mothers, one father) whose children attended an LSEN school in Johannesburg. Data were analysed following Interpretative Phenomenological Analysis procedures.

Four superordinate themes emerged: (1) traumatic shock at diagnosis and systemic betrayal; (2) cumulative caregiving strain as chronic trauma exposure; (3) secondary trauma from institutional gatekeeping and stigma; and (4) precarious resilience and post-traumatic growth. Parents described diagnostic experiences marked by insensitive communication, fragmented healthcare pathways, and educational exclusion that functioned as compound traumatic events. Chronic hypervigilance, anticipatory grief, and moral injury from inadequate institutional support constituted sustained trauma burdens.

Parental trauma in LSEN contexts arises from the convergence of individual psychological responses, systemic failures, and structural violence.