Challenges in pre-loss care to parents facing their child's end-of-life: A qualitative study from the clinicians perspective

ACADEMIC PEDIATRICS | Online – 27 August 2021 – Bereavement care for parents predominantly focuses on care after child loss. However, healthcare professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child’s end-of-life (EoL). Pre-loss care is tailored to the parents’ needs, thus highly varying. To better understand the nature of pre-loss care, this study aimed to gain insight into the challenges HCPs encounter while providing care for parents during their child’s EoL. From the HCPs’ inner perspective, three dyadic dimensions in pre-loss care delivery were identified that create tension in HCPs: sustaining hope versus realistic prospects, obtaining emotional closeness versus emotional distance, and exploring emotions versus containing emotions. Throughout pre-loss care delivery, HCPs weighed which strategies to use based on their perception of parental needs, the situation, and their own competencies. HCPs remained with lingering uncertainties on whether the pre-loss care they provide constituted optimal care. As a result of the experienced tension, HCPs are at risk for prolonged distress and possibly even compassion fatigue. In order to maintain a positive emotional balance in HCPs, education should focus on adapting positive coping strategies and provide hands-on training. Furthermore, on an institutional level a safe environment should be fostered and well-being could be enhanced through learning by sharing as a team.

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