Challenges in Preloss Care to Parents Facing Their Child's End-of-Life: A Qualitative Study From the Clinicians Perspective

E.M. Kochen*, S.C.C.M. Teunissen, P.A. Boelen, F. Jenken, R.R. de Jonge, M.A. Grootenhuis, M.C. Kars, emBRACE Working Group

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


Objective: 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.

Methods: 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. Results: 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.

Conclusions: 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.

Original languageEnglish
Pages (from-to)910-917
Number of pages8
JournalAcademic Pediatrics
Issue number6
Early online date26 Aug 2021
Publication statusPublished - Aug 2022


  • bereavement
  • end of life care
  • health personnel
  • palliative care
  • pediatrics


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