TY - JOUR
T1 - Challenges in Preloss Care to Parents Facing Their Child's End-of-Life
T2 - A Qualitative Study From the Clinicians Perspective
AU - Kochen, Eline M.
AU - Teunissen, Saskia C.C.M.
AU - Boelen, Paul A.
AU - Jenken, Floor
AU - de Jonge, Roos R.
AU - Grootenhuis, Martha A.
AU - Kars, Marijke C.
N1 - Funding Information:
Financial statement: This publication is part of the emBRACE-study (EMbedded BeReAvement Care in paEdiatrics), supported by the Netherlands Organisation for Health Research and Development [grant number 844001506]. The funding party did not take part in the conception and design, data collection and analysis, neither in drafting or revising the manuscript.
Publisher Copyright:
© 2021 The Authors
PY - 2022/8
Y1 - 2022/8
N2 - 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.
AB - 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.
KW - bereavement
KW - end of life care
KW - health personnel
KW - palliative care
KW - pediatrics
UR - http://www.scopus.com/inward/record.url?scp=85116795048&partnerID=8YFLogxK
U2 - 10.1016/j.acap.2021.08.015
DO - 10.1016/j.acap.2021.08.015
M3 - Article
C2 - 34455098
AN - SCOPUS:85116795048
SN - 1876-2859
VL - 22
SP - 910
EP - 917
JO - Academic Pediatrics
JF - Academic Pediatrics
IS - 6
ER -