National survey of children's hospitals on legacy-making activities.

Journal of Palliative Medicine
Terrah L FosterMary Jo Gilmer

Abstract

Many hospitals offer legacy-building activities for children with serious illnesses or their family members, yet legacy-making has received little empirical attention. This descriptive cross-sectional study examined healthcare provider perceptions of legacy-making activities (e.g., memory books) currently offered by hospitals to pediatric patients and their families. Healthcare providers in seventy-seven (100%) teaching children's hospitals across the United States completed an electronic survey. Nearly all providers surveyed reported offering legacy-making activities to ill children and their families, with patients and families usually completing the activity together. Most activities were offered before a patient died and when cure is no longer being sought. Perceived outcomes included benefit to bereaved families and a tangible memento of their deceased child. Legacy-making may enhance life and decrease suffering for dying children and their families. Healthcare professionals can facilitate opportunities for children and their families to build legacies. Additional research is needed to examine activities across different age groups and conditions, the best time to offer such activities, and associations with positive and n...Continue Reading

References

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Citations

May 2, 2013·Journal of Pediatric Oncology Nursing : Official Journal of the Association of Pediatric Oncology Nurses·Terrah Foster AkardPamela S Hinds
Aug 3, 2014·Pediatric Clinics of North America·Adam Rapoport, Kevin Weingarten
Aug 3, 2014·Pediatric Clinics of North America·Liza-Marie JohnsonJustin N Baker
Feb 2, 2016·Aging & Mental Health·Tina Sue Fletcher
Oct 25, 2014·Palliative & Supportive Care·Terrah Foster Akard, Mary Jo Gilmer
Dec 3, 2014·Journal for Specialists in Pediatric Nursing : JSPN·Ashleigh ButlerBeverley Copnell
Dec 19, 2017·Journal of Social Work in End-of-life & Palliative Care·Abigail J RolbieckiKatina Bitsicas
Jul 26, 2018·International Journal of Palliative Nursing·Alison RodriguezKirstine McDermid
Mar 21, 2019·Journal of Palliative Medicine·Megan R SchaeferAvi Madan-Swain
Dec 6, 2019·Journal of Hospice and Palliative Nursing : JHPN : the Official Journal of the Hospice and Palliative Nurses Association·Terrah Foster AkardMary Jo Gilmer
Jan 15, 2015·Pediatric Blood & Cancer·Terrah Foster AkardMary Jo Gilmer
Jul 14, 2020·Clinical Pediatrics·Jessika BolesJessica Cook
Oct 1, 2020·Journal of Palliative Medicine·Terrah Foster AkardMary Jo Gilmer
Apr 25, 2018·Journal of Neonatal-perinatal Medicine·T F AkardM J Gilmer
Jul 17, 2018·The American Journal of Hospice & Palliative Care·Andrew Collins
Jan 27, 2019·Omega·Abigail J RolbieckiKatina Bitsicas
Nov 14, 2020·Journal of Pain and Symptom Management·Eline M KochenUNKNOWN emBRACE Working Group
Mar 17, 2021·Journal of Social Work in End-of-life & Palliative Care·Danielle Faye JonasNicholas Purol
Apr 16, 2021·Oncology Nursing Forum·Terrah Foster AkardMary Jo Gilmer
May 1, 2021·Children·Taryn SchuelkeMalinda Hill
May 14, 2021·Contemporary Clinical Trials Communications·Terrah Foster AkardMary Jo Gilmer
Feb 24, 2018·Journal of Pain and Symptom Management·Diane PortmanKristine A Donovan
Jul 6, 2021·Palliative Medicine Reports·Elyse AndrewsNicholas Slamon
Sep 18, 2021·The American Journal of Hospice & Palliative Care·Terrie Clarke, Michael Connolly

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BETA
amputation

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REDCap
SPSS

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