Missing Voices: Lessons Learned from Nonparticipating Caregivers in Palliative Care Research

Puja J. Umaretiya; Maya Ilowite; Lauren Fisher; Marie Bakitas; Erin R. Currie; Stephanie Gilbertson-White; Lisa Lindley; Eric J. Roeland; Jennifer W. Mack; Kira Bona

doi:10.1089/jpm.2021.0433

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Missing Voices: Lessons Learned from Nonparticipating Caregivers in Palliative Care Research

Journal article

Open access

Peer reviewed

Missing Voices: Lessons Learned from Nonparticipating Caregivers in Palliative Care Research

Puja J. Umaretiya, Maya Ilowite, Lauren Fisher, Marie Bakitas, Erin R. Currie, Stephanie Gilbertson-White, Lisa Lindley, Eric J. Roeland, Jennifer W. Mack and Kira Bona

Journal of palliative medicine, Vol.25(3), pp.455-460

03/01/2022

DOI: 10.1089/jpm.2021.0433

PMCID: PMC8968850

PMID: 34981972

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8968850View

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Abstract

Background: Our previous study to understand end-of-life care of adolescents and young adults (AYAs) had a suboptimal survey response rate by bereaved caregivers.Objective: To identify sociodemographic factors associated with caregiver nonparticipation.Design/Setting/Subjects: Post hoc analysis of a retrospective multicenter cohort study of caregivers of deceased AYAs from 2013 to 2016.Measurements: Exposures: race, ethnicity, area-, and household-poverty. Primary outcome: survey participation. Secondary outcomes: loss to follow-up at each recruitment step.Results: Thirty-five of 263 eligible caregivers participated in the survey (13.3%). Caregivers of AYAs living in high-poverty zip codes were significantly more likely to have a disconnected or incorrect phone number (odds ratio [OR] 2.12; 95% confidence interval [CI] 1.04-4.58; p = 0.03). Caregivers of nonwhite AYAs were significantly less likely to participate (OR 0.35; 95% CI 0.12-0.87; p = 0.01).Conclusions: Caregivers of patients living in poverty are less likely to be reached by traditional recruitment efforts. Caregivers of racial/ethnic minority patients are less likely to participate overall.

Health Care Sciences & Services

Life Sciences & Biomedicine

Science & Technology

Details

Title: Subtitle: Missing Voices: Lessons Learned from Nonparticipating Caregivers in Palliative Care Research
Creators: Puja J. Umaretiya - Dana-Farber Cancer Institute
Maya Ilowite - Dana-Farber Cancer Institute
Lauren Fisher - Dana-Farber Cancer Institute
Marie Bakitas - University of Alabama at Birmingham
Erin R. Currie - University of Alabama at Birmingham
Stephanie Gilbertson-White - University of Iowa
Lisa Lindley - University of Tennessee at Knoxville
Eric J. Roeland - Oregon Health & Science University
Jennifer W. Mack - Dana-Farber Cancer Institute
Kira Bona - Dana-Farber Cancer Institute
Resource Type: Journal article
Publication Details: Journal of palliative medicine, Vol.25(3), pp.455-460
Publisher: Mary Ann Liebert, Inc
DOI: 10.1089/jpm.2021.0433
PMID: 34981972
PMCID: PMC8968850
ISSN: 1096-6218
eISSN: 1557-7740
Number of pages: 6
Language: English
Date published: 03/01/2022
Academic Unit: Nursing; Internal Medicine
Record Identifier: 9984359577102771

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