Interpretative Phenomenological Analysis of Mothers’ Experience of Caring for Their Child Dying of Cancer at Home

Pediatric palliative care (PPC) places mothers in an extremely challenging situation, where they must confront not just the approaching death of their child, but also their own suffering. In this context, hospitalization at home (HaH) is often the preferred choice for children and parents alike since it offers the comfort of a familiar setting and the reassuring presence of family. Yet, there is limited research into how the home setting may impact the maternal experience of a dying child. This qualitative study aims to capture the intimate experience of mothers in PPC during the HaH of a child dying of cancer and to explore how they make sense of this specific experience. Non-directive interviews with three mothers were conducted and submitted to an interpretative phenomenological analysis. We identified one major theme made up of three sub-themes: waiting, uncertainty and life on hold. These three dimensions do not merely represent psychological states: they are part of a process in which the impending death is not just an imminent event, but a reality that is already active, progressive and psychologically invasive. This process may have an impact on the course of the mother's subsequent bereavement, which is an important consideration for professionals to integrate into their supportive interventions.