1
40
1
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
June 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2021.03.026" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.03.026</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Factors Affecting Recruitment and Participation of Bereaved Parents in Research: A Brief Report
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
bereaved parent survey; complex chronic conditions; parental bereavement; pediatric end-of-life research; research diversity
Creator
An entity primarily responsible for making the resource
Cleveland RW; Snaman J; DeCourcey DD
Description
An account of the resource
CONTEXT: Inclusion of bereaved parents in survey-based research is essential to improving end-of-life care for children and their families. However, racial and ethnic minorities are vastly underrepresented in these studies. OBJECTIVES: Examine which child demographic characteristics are associated with parental participation in survey-based research. METHODS: Post-hoc secondary analysis of the Survey of Caring for Children with Complex Chronic Conditions. Demographic data were extracted from children's medical records for all eligible parents. Using logistic regression, associations were calculated between child demographics and level of parental study participation (enrolled and completed survey (full participation), enrolled but did not complete survey (incomplete participation), and declined participation). RESULTS: 209 children's parents were eligible for analysis, 114 (55%) fully participated, 36 (17%) incompletely participated, and 59 (28%) declined participation. Compared to those who fully participated, parents of non-white children were more likely to incompletely participate (OR 3.01, 95%CI 1.2-7.4), while those with public insurance only were more likely to decline participation (OR 2.1, 95%CI 1.08-4.03). Parents of children who had a documented limitation to resuscitation order were more likely to fully participate in the study (reference group) than incompletely participate (OR 0.42, 95%CI 0.2-0.91), while parents of children who had subspecialty palliative care involvement were less likely to decline participation in the study (OR 0.5, 95%CI 0.26-0.97). CONCLUSIONS: To ensure optimal end-of-life care for children, all parental voices should be heard. Recruitment of racial/ethnic minorities in bereaved parent survey-based studies can be improved by focusing on specific factors that are associated with parental survey completion.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2021.03.026" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.03.026</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
bereaved parent survey
Cleveland RW
Complex Chronic Conditions
DeCourcey DD
Journal of Pain and Symptom Management
June 2021 List
parental bereavement
pediatric end-of-life research
research diversity
Snaman J