Publication
Challenges in preloss care to parents facing their child's end-of-life: A qualitative study from the health care professionals' perspective
Kochen E, Teunissen S, Boelen P, Jenken F, De Jonge R, Grootenhuis M, Kars M · Palliative Medicine · 2021
Background: Bereavement care is an inherent aspect of paediatric palliative care, mainly focused on parental bereavement after child loss. However, Health Care Professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child's end-of-life. As such preloss care is provided individually and thus highly varying. Aim(s): To better understand the nature of preloss care, this study aims to gain insight into the challenges HCPs encounter in providing preloss care for parents during their child's end-of-life. Method(s): Exploratory qualitative research using semi-structured interviews with physicians and nurses working in neonatology and paediatrics in 3 university paediatric hospitals and 1 child home care service. A multi-disciplinary team thematically analysed the data. Result(s): 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 provided constituted optimal care. Conclusion(s): 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.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.