OBJECTIVE: Despite recognition that dying children and their families have unique palliative care needs, there has been little empirical inquiry of parent perspectives to improve the quality of end-of-life care and communication. The purpose of this study was to identify and describe the priorities and recommendations for end-of-life care and communication from the parents' perspective. METHODS: This was a qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires, conducted at 3 pediatric ICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after withdrawal of life support participated in this study. We measured parent-identified priorities for end-of-life care and communication. RESULTS: Parents identified 6 priorities for pediatric end-of-life care including honest and complete information, ready access to staff, communication and care coordination, emotional expression and support by staff, preservation of the integrity of the parent-child relationship, and faith. CONCLUSIONS: Parental priorities and recommendations offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research.
OBJECTIVE: Despite recognition that dying children and their families have unique palliative care needs, there has been little empirical inquiry of parent perspectives to improve the quality of end-of-life care and communication. The purpose of this study was to identify and describe the priorities and recommendations for end-of-life care and communication from the parents' perspective. METHODS: This was a qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires, conducted at 3 pediatric ICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after withdrawal of life support participated in this study. We measured parent-identified priorities for end-of-life care and communication. RESULTS: Parents identified 6 priorities for pediatric end-of-life care including honest and complete information, ready access to staff, communication and care coordination, emotional expression and support by staff, preservation of the integrity of the parent-child relationship, and faith. CONCLUSIONS: Parental priorities and recommendations offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research.
Authors: Dorothy Brooten; Joanne M Youngblut; Lynn Seagrave; Carmen Caicedo; Dawn Hawthorne; Ivette Hidalgo; Rosa Roche Journal: Am J Hosp Palliat Care Date: 2012-04-24 Impact factor: 2.500
Authors: Tessie W October; Pamela S Hinds; Jichuan Wang; Zoelle B Dizon; Yao I Cheng; Debra L Roter Journal: Pediatr Crit Care Med Date: 2016-06 Impact factor: 3.624
Authors: Amii C Steele; Julia Kaal; Amanda L Thompson; Maru Barrera; Bruce E Compas; Betty Davies; Diane L Fairclough; Terrah L Foster; Mary Jo Gilmer; Nancy Hogan; Kathryn Vannatta; Cynthia A Gerhardt Journal: J Pediatr Hematol Oncol Date: 2013-05 Impact factor: 1.289