Health care professionals’ experiences with pre-loss care in pediatrics; goals, strategies, obstacles and facilitators

Abstract

CONTEXT: Although parents experience grief when confronted with their child’s deterioration and imminent death, most bereavement care is focused on supporting parents after child loss. Insight into the health care professionals’ (HCPs) intentions and strategies in pre-loss care during the end-of-life is still lacking. OBJECTIVES: To create a starting point for improvement of pre-loss care, this study explores HCPs’ experiences with providing support aimed at parental feelings of grief during the child’s end-of-life. METHODS: Exploratory qualitative research using individual semi-structured interviews with clinicians in pediatrics and neonatology in hospital and homecare settings. Data were thematically analyzed by a multidisciplinary team. RESULTS: Nineteen HCPs participated. HCPs tried to ensure that (1) parents could reflect on the care received as concordant to their preferences and (2) were not hindered in their bereavement as a consequence of their professional actions. Strategies included maximizing parental presence, enabling parental involvement in decision making, and ensuring a dignified death. While employing these strategies, HCPs faced several difficulties: uncertainty about the illness-course, unpredictability of parental grief responses, and being affected themselves by the child’s imminent death. It helped HCPs to develop a bond with parents, find comfort with colleagues and making joint decisions with colleagues. CONCLUSIONS: HCPs strive to improve parental coping after the child’s death, yet apply strategies that positively influence parental preparedness and wellbeing during the end-of-life as well. Individual HCPs are left with many uncertainties. A more robust approach based on theory, evidence and training is needed to improve pre-loss care in pediatrics.