Journal article
After an end-of-life decision: Parents' reflections on living with an end-of-life decision for their child
JE Sullivan, LH Gillam, PT Monagle
Journal of Paediatrics and Child Health | WILEY | Published : 2020
DOI: 10.1111/jpc.14816
Abstract
Aim: Parents' role as end-of-life decision-makers for their child has become largely accepted Western health-care practice. How parents subsequently view and live with the end-of-life decision (ELD) they made has not been extensively examined. To help extend understanding of this phenomenon and contribute to care, as a part of a study on end-of-life decision-making, bereaved parents were asked about the aftermath of their decision-making. Methods: A qualitative methodology was used. Semi-structured interviews were conducted with parents who had discussed ELDs for their child who had a life-limiting condition and had died. Data were thematically analysed. Results: Twenty-five bereaved parents..
View full abstractGrants
Funding Acknowledgements
The authors thank the parents who participated in the study and those who reviewed the study material; for their generosity of spirit, their concern for other parents, and commitment to the professional development of health-care professionals. The support and practical assistance given to this research study by The Compassionate Friends Victoria, The Social Work Department, The Royal Children's Hospital Melbourne, and Very Special Kids and the aid of the Australian Centre for Grief and Bereavement, are gratefully acknowledged by the authors. The work took place through The University of Melbourne with the assistance of The Social Work Department, The Royal Children's Hospital Melbourne and The Compassionate Friends Victoria and Very Special Kids, Victoria. LH Gillam's position is partly funded by the Royal Children's Hospital Foundation. JE Sullivan was the holder of an Australian Postgraduate Award.