Health care professionals' awareness of a child's impending death
Kobler K, Bell C, Kavanaugh K, Gallo AM, Corte C, Vincent C. Health Care Professionals' Awareness of a Child's Impending Death. Qual Health Res. 2020 Jul;30(9):1314-1325. doi: 10.1177/1049732320911627. Epub 2020 Apr 4. PMID: 32249703
Health care professionals' (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs' initial awareness of a child's impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a "delicate dance of figuring out" key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families.