Abstract
Bereavement care for parents predominantly focuses on care after child loss. However, Health Care Professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child's end-of-life. Preloss care is tailored to the parents' needs, thus highly varying. To better understand the nature of preloss care, this study aims to gain insight into the challenges HCPs encounter while providing care for parents during their child's end-of-life. Exploratory qualitative research using semistructured interviews with physicians and nurses working in neonatology and pediatrics in 3 university pediatric hospitals and 1 child home care service. A multidisciplinary team thematically analyzed the data. Twenty-two HCPs participated in this study. From the HCPs' inner perspective, three dyadic dimensions in preloss 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 preloss 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 preloss 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.
Highlights
Three dyadic dimensions are identified that cause tension for health care professionals in providing preloss care to parents in pediatrics
TAGEDPTHE LIFE EXPECTANCY of children with severe illnesses has increased, which results in a growing number of children receiving palliative care. These children are mostly seen by regular health care professionals (HCPs) in neonatology and pediatrics, who are increasingly involved in end-of-life care and confronted with child loss in their daily practice
Other studies show that several specific situations might complicate preloss care and account for distress in Health Care Professionals (HCPs), such as end-of-life decision making or treatment withdrawal.[7−11] To better understand the broader nature and variety of preloss care, this study aims to gain insight into the challenges HCPs encounter from their lived experience in providing care for parents during their child's endof-life
Summary
Challenges in Preloss Care to Parents Facing Their Child’s End-of-Life: A Qualitative Study From the Clinicians Perspective.
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