Health Care Professionals' Experiences With Preloss Care in Pediatrics: Goals, Strategies, Obstacles, and Facilitators

Eline M Kochen,Paul A Boelen,Saskia C.C.M Teunissen,Floor Jenken,Roos R De Jonge,Martha A Grootenhuis,Marijke C Kars,Manon J.N.L Bender,F.M.C Van Berkestijn,J.L Falkenburg,I.M.E Frohn-Mulder,H Knoester,A.C Molderink

doi:10.1016/j.jpainsymman.2020.11.001

Abstract

ContextAlthough parents experience grief when confronted with their child's deterioration and imminent death, most bereavement care is focused on supporting parents after child loss. Insight into intentions and strategies of the health care professionals (HCPs) in preloss care during the end of life is still lacking. ObjectivesTo create a starting point for improvement of preloss care, this study explores HCPs' experiences with providing support aimed at parental feelings of grief during the child's end of life. MethodsExploratory qualitative research using individual semistructured interviews with clinicians in pediatrics and neonatology in hospital and homecare settings. Data were thematically analyzed by a multidisciplinary team. ResultsNineteen HCPs participated. HCPs tried to ensure that parents could reflect on the care received as concordant to their preferences and were not hindered in their bereavement as a consequence of their professional actions. Strategies included maximizing parental presence, enabling parental involvement in decision making, and ensuring a dignified death. While using these strategies, HCPs faced several difficulties: uncertainty about the illness course, unpredictability of parental grief responses, and being affected themselves by the child's imminent death. It helped HCPs to develop a bond with parents, find comfort with colleagues, and making joint decisions with colleagues. ConclusionHCPs strive to improve parental coping after the child's death, yet apply strategies that positively influence parental preparedness and well-being during the end of life as well. Individual HCPs are left with many uncertainties. A more robust approach based on theory, evidence, and training is needed to improve preloss care in pediatrics.

Highlights

Losing a child is a devastating event for parents resulting in poor psychosocial and mental health outcomes[1,2] and increased levels of mortality.[3]
health care professionals (HCPs) tried to ensure that parents could reflect on the care received as concordant to their preferences and were not hindered in their bereavement as a consequence of their professional actions
Individual HCPs are left with many uncertainties

Summary

Introduction

Losing a child is a devastating event for parents resulting in poor psychosocial and mental health outcomes[1,2] and increased levels of mortality.[3] To aid parents in coping with loss, a growing number of interventions have been developed by health care professionals (HCPs) These interventions mostly focus on bereavement care after child loss.[4,5] studies show that feelings of grief are felt by parents from diagnosis, throughout illness progression, and persist beyond the child’s death.[6,7] HCPs experience a growing responsibility to aid parents in coping with experienced losses and feelings of grief during the end of life period.[8,9] Engaging in preloss care during the end of life might improve parental bereavement outcomes after the loss of a child. This study aims to achieve a thorough understanding of the HCPs’ intentions and experiences with providing preloss care aimed at supporting parental grief during the child’s end of life

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Methods

Results

Discussion

Conclusion