Literature DB >> 16802682

In their own voices: families discuss end-of-life decision making--part 2.

Shelly Berg.   

Abstract

This two part series of articles presents poignant narratives based on interviews done with two mothers who suffered the worst pain imaginable--the pain of losing a child. Each woman describes an insensitive health care system with providers unaware of parental views and needs when confronted with difficult decisions during their children's illnesses and subsequent deaths. Each woman also hoped that telling her story might help nurses and other health care providers better understand how to help. Part 1 of the series is the story of a professional, highly educated mother who experienced periods of extreme distress while she tried to give her premature daughter an identity and meaningful life in the neonatal intensive care unit and the difficulties faced when she was transferred to another unit as she became more ill Part 2 of the series is the story of a highly devoted working mother who tried to understand the information that was rarely offered to her as she lived through the extreme surgical and uncertain medical interventions given her toddler daughter with a fast-growing brain tumor. Both women faced hard decisions along their daughters' illness trajectories. Both hoped for support from their health care providers in being active in decision-making. These narratives are in their own voices, from their own points of view.

Entities:  

Mesh:

Year:  2006        PMID: 16802682

Source DB:  PubMed          Journal:  Pediatr Nurs        ISSN: 0097-9805


  6 in total

1.  Parental Moral Distress and Moral Schism in the Neonatal ICU.

Authors:  Gabriella Foe; Jonathan Hellmann; Rebecca A Greenberg
Journal:  J Bioeth Inq       Date:  2018-05-25       Impact factor: 1.352

Review 2.  Difficult conversations: from diagnosis to death.

Authors:  Joel D Marcus; Frank E Mott
Journal:  Ochsner J       Date:  2014

3.  What information do parents need when facing end-of-life decisions for their child? A meta-synthesis of parental feedback.

Authors:  Vicki Xafis; Dominic Wilkinson; Jane Sullivan
Journal:  BMC Palliat Care       Date:  2015-04-30       Impact factor: 3.234

4.  Balancing obligations: should written information about life-sustaining treatment be neutral?

Authors:  Vicki Xafis; Dominic Wilkinson; Lynn Gillam; Jane Sullivan
Journal:  J Med Ethics       Date:  2014-04-24       Impact factor: 2.903

5.  Decision-making at the borderline of viability: Who should decide and on what basis?

Authors:  Lynn Gillam; Dominic Wilkinson; Vicki Xafis; David Isaacs
Journal:  J Paediatr Child Health       Date:  2017-02       Impact factor: 1.954

6.  Caring Decisions: The Development of a Written Resource for Parents Facing End-of-Life Decisions.

Authors:  Vicki Xafis; Lynn Gillam; Jenny Hynson; Jane Sullivan; Mary Cossich; Dominic Wilkinson
Journal:  J Palliat Med       Date:  2015-09-29       Impact factor: 2.947

  6 in total

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