Transitioning to Remote Recruitment and Intervention: A Tale of Two Palliative Care Research Studies Enrolling Underserved Populations During COVID-19

Brody, Abraham A.; Convery, Kimberly; Kline, Danielle; Fink, Regina; Fischer, Stacy

doi:10.1016/j.jpainsymman.2021.06.017

Cited by 18 publications

(37 citation statements)

References 13 publications

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“…In addition, while our participants did not voice concerns about technological barriers, multiple studies have demonstrated inequities in access to and ability to use mobile devices (e.g., smartphones, tablets, or laptops) for research participation along with challenges related to poor connectivity. Specifically, such issues have been documented in studies conducted during the COVID-19 pandemic with older adults in the U.S. and Italy [82,83], youth volunteers in Sudan [84], and adults in Malawi and the United Kingdom [81,84].…”

Section: Plos Onementioning

confidence: 99%

Experience and lessons learned from multi-modal internet-based recruitment of U.S. Vietnamese into research

Huynh

Bednarczyk

et al. 2021

PLoS ONE

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Background Asian-Americans are one of the most understudied racial/ethnic minority populations. To increase representation of Asian subgroups, researchers have traditionally relied on data collection at community venues and events. However, the COVID-19 pandemic has created serious challenges for in-person data collection. In this case study, we describe multi-modal strategies for online recruitment of U.S. Vietnamese parents, compare response rates and participant characteristics among strategies, and discuss lessons learned. Methods We recruited 408 participants from community-based organizations (CBOs) (n = 68), Facebook groups (n = 97), listservs (n = 4), personal network (n = 42), and snowball sampling (n = 197). Using chi-square tests and one-way analyses of variance, we compared participants recruited through different strategies regarding sociodemographic characteristics, acculturation-related characteristics, and mobile health usage. Results The overall response rate was 71.8% (range: 51.5% for Vietnamese CBOs to 86.6% for Facebook groups). Significant differences exist for all sociodemographic and almost all acculturation-related characteristics among recruitment strategies. Notably, CBO-recruited participants were the oldest, had lived in the U.S. for the longest duration, and had the lowest Vietnamese language ability. We found some similarities between Facebook-recruited participants and those referred by Facebook-recruited participants. Mobile health usage was high and did not vary based on recruitment strategies. Challenges included encountering fraudulent responses (e.g., non-Vietnamese). Perceived benefits and trust appeared to facilitate recruitment. Conclusions Facebook and snowball sampling may be feasible strategies to recruit U.S. Vietnamese. Findings suggest the potential for mobile-based research implementation. Perceived benefits and trust could encourage participation and may be related to cultural ties. Attention should be paid to recruitment with CBOs and handling fraudulent responses.

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Section: Plos Onementioning

confidence: 99%

Experience and lessons learned from multi-modal internet-based recruitment of U.S. Vietnamese into research

Huynh

Bednarczyk

et al. 2021

PLoS ONE

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“… 13 , 14 Therefore, it is crucial to revisit the challenges of home palliative care during the COVID-19 with many restrictions in place and technologies on the rise. Multiple research studies have been published on challenges and opportunities of home palliative care during the COVID-19, 13 , 14 but they have not been reviewed yet. Current review articles on home palliative care during the COVID-19 pandemic are not a literature review of research articles.…”

Section: Introductionmentioning

confidence: 99%

“… 15 For example, during the pandemic, loneliness, but not internet accessibility, was reported to be a major issue in care homes, 16 while internet accessibility might be a major issue in palliative care at home. 13 , 14 In care homes, COVID-19 hit hard patients 17 while this increased risk was not an issue for home palliative care.…”

Section: Introductionmentioning

confidence: 99%

“…We included articles from different cultures and countries in order to have a broader view of this evolving field of palliative care. 13 , 14 , 18 Most of the available articles were qualitative studies, 13 , 18 and some were quantitative based on medical records. 19 Qualitative studies focused mainly on the experiences/perception of home palliative care professionals, 13 , 20 and less on the experience of patients.…”

Section: Introductionmentioning

confidence: 99%

“… 19 Qualitative studies focused mainly on the experiences/perception of home palliative care professionals, 13 , 20 and less on the experience of patients. 13 , 14 Consequently, the current review article aimed to answer the following questions: 1. What do qualitative studies (surveys/interviews) reveal about the experiences/perception of patients/caregivers/health professionals on home palliative care during the COVID-19 pandemic?…”

Section: Introductionmentioning

confidence: 99%

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Home Palliative Care during the COVID-19 Pandemic: A Scoping Review

Mojtahedi

Shen

2022

Am J Hosp Palliat Care

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Palliative care (PC), which improves the quality of life for patients with serious illnesses, can be offered in multiple settings, such as the hospital, community, and home. The trend toward delivering PC at home has been recently accelerated during the COVID-19 pandemic. The pandemic has created challenges for patients with serious illnesses who have been proven to be susceptible to serious COVID-19 illnesses. This review of the literature presents research studies on home PC (HPC) during the pandemic. Databases (PubMed, Scopus, and Web of Science Core Collection) were searched. Twelve research/case studies were found to be relevant. These articles gathered information either through qualitative (surveys/interviews) methods or medical records. Most qualitative articles focused on perceived challenges and opportunities from HPC professionals’ perspectives. Adopting telehealth was frequently discussed as a key tool to adjust to the pandemic. In general, HPC professionals and patients had a positive attitude toward telehealth, and this attitude was much more pronounced among professionals than patients. Among HPC professionals, some reports indicated that their burnout rates reduced, and job satisfaction increased during the pandemic. Regarding clinical and cost outcomes, there is a gap in the literature on HPC during the pandemic. In conclusion, despite challenges, it seems that the pandemic has gifted some long-term opportunities for promoting HPC in combination with telehealth. COVID-19 will not be the last pandemic, and we should be prepared for the next one by updating policies and building concrete infrastructure for HPC.

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Patient Navigator Intervention to Improve Palliative Care Outcomes for Hispanic Patients With Serious Noncancer Illness

Fischer,

Min,

Kline

et al. 2024

JAMA Intern Med

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ImportanceDisparities persist across the trajectory of serious illness, including at the end of life. Patient navigation has been shown to reduce disparities and improve outcomes for underserved populations.ObjectiveTo determine the effectiveness of a lay patient navigator intervention, Apoyo con Cariño, in improving palliative care outcomes among Hispanic patients.Design, Setting, and ParticipantsThis was a multicenter randomized clinical trial that took place across academic, nonprofit, safety-net, and community health care systems in urban, rural, and mountain/frontier regions of Colorado from January 2017 to January 2021. Self-identifying Hispanic adults with serious noncancer medical illness and limited prognosis were recruited. Data were collected and analyzed from July 2022 to July 2023.InterventionsParticipants randomized to the intervention group received 5 home visits from a bilingual, bicultural lay patient navigator; participants randomized to control received care as usual. Both groups received culturally tailored educational materials. Investigators/outcome accessors remained blinded to participant assignment.Main Outcomes and MeasuresChange in score from baseline to 3 months on the Functional Assessment of Chronic Illness Therapy (FACIT) General quality of life (QOL) scale (primary outcome), Advance Care Planning (ACP) Engagement Survey, Brief Pain Inventory, Edmonton Symptom Assessment Scale, and FACIT Spiritual Well-Being subscale; at 6 months, advance directive (AD) documentation; and at 46 months or death, hospice utilization and length of stay, as well as aggressiveness of care at end of life.ResultsOf 209 patients enrolled (mean [SD] age, 63.6 [14.3] years; 108 [51.7%] male), 105 patients were randomized to control and 104 patients to the intervention. There were no statistically significant differences in the change in mean (SD) QOL score between the intervention and control groups (5.0 [16.5] vs 4.3 [15.5]; P = .75). Participants in the intervention group, compared with the control group, had statistically significant greater increases in mean (SD) ACP engagement (0.8 [1.3] vs 0.1 [1.4]; P &lt; .001) and were more likely to have a documented AD (62 of 104 [59.6%] vs 28 of 105 [26.9%]; P &lt; .001). There were no statistically significant differences in mean (SD) change in pain intensity score (0-10) between patients in the intervention group compared with control (−0.4 [2.6] vs −0.5 [2.8]; P = .79), nor pain interference (−0.2 [3.7] vs −0.4 [3.7]; P = .71). Patients receiving the intervention were more likely to be referred to hospice compared with patients receiving control (19 of 43 patients [44.2%] vs 7 of 33 patients [21.2%]; P = .04) and less likely to receive aggressive care at end of life (27 of 42 patients [64.3%] vs 28 of 33 patients [84.8%]; P = .046).Conclusion and RelevanceIn this randomized clinical trial, a culturally tailored patient navigator intervention did not improve QOL for patients. However, the intervention did increase ACP engagement, AD documentation, and hospice utilization in Hispanic persons with serious medical illness.Trial RegistrationClinicalTrials.gov Identifier: NCT03181750

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Transitioning to Remote Recruitment and Intervention: A Tale of Two Palliative Care Research Studies Enrolling Underserved Populations During COVID-19

Cited by 18 publications

References 13 publications

Experience and lessons learned from multi-modal internet-based recruitment of U.S. Vietnamese into research

Experience and lessons learned from multi-modal internet-based recruitment of U.S. Vietnamese into research

Home Palliative Care during the COVID-19 Pandemic: A Scoping Review

Patient Navigator Intervention to Improve Palliative Care Outcomes for Hispanic Patients With Serious Noncancer Illness

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