Barriers to Research Participant Retention in a Longitudinal Study of End-of-Life Decision Making

Schneider, Samantha; Kub, Joan; Hughes, Mark; Texeira, Kenneth; Sulmasy, Daniel P.; Astrow, Alan B.; Thompson, Richard E.; Clawson, Lora; Nolan, Marie T.

doi:10.1097/njh.0b013e3181d76f5d

Cited by 3 publications

(1 citation statement)

References 25 publications

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“…1213 However, conducting research in hospice populations remains fraught with methodological 14 and ethical 15 challenges. Methodological challenges involve the necessity of screening large numbers of patients to accrue an adequate sample 16 , attrition due to death above what is acceptable in healthier populations 17 , and gatekeeping by both professional and informal caregivers. 14 Ethical challenges involve whether to view hospice populations as vulnerable or as autonomous 15,18 , how to maintain a valid informed consent when the patient begins to decline 19 , and whether research is even morally justifiable in the dying.…”

Section: Introductionmentioning

confidence: 99%

Lessons From the Field

Zambroski

Buck

Garrison

et al. 2014

Journal of Cardiovascular Nursing

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Section: Introductionmentioning

confidence: 99%

Lessons From the Field

Zambroski

Buck

Garrison

et al. 2014

Journal of Cardiovascular Nursing

View full text Add to dashboard Cite

Recruitment and retention of a challenging population: Lessons learned and design implications

Hershey

Hession

2017

Applied Nursing Research

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Oncology palliative care: access barriers: bibliometric study

Neto

Paiva

Lima

et al. 2021

BMJ Support Palliat Care

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ObjectiveTo perform a bibliometric analysis of studies that evaluated the barriers to access to cancer palliative care (PC).MethodsThis was a bibliometric review using MEDLINE; EMBASE; Web Of Science; LILACS and the Cochrane Library. A search was conducted with the terms Barriers, Palliative Care and Cancer. Articles whose objectives targeted barriers to access to PC were considered, regardless of the year of publication. The setting is articles published from 1987 to 2020.ResultsA total of 6158 articles were identified, of which 217 were eligible for analysis. The USA and UK being the countries with the largest number of articles on the subject (n=101, n=18, respectively). After expert analysis, the barriers were grouped into nine categories.ConclusionsBarriers related to symptom control were identified in 19% of the eligible articles, along with barriers related to health, which with 24% of occurrence in the articles, were the most frequently cited barriers. Countries which have implemented PC for some time were those with the greatest number of publications and in journals with the highest impact factors. Cross-sectional study design continues to be the most frequently used in publications.

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Barriers to Research Participant Retention in a Longitudinal Study of End-of-Life Decision Making

Cited by 3 publications

References 25 publications

Lessons From the Field

Lessons From the Field

Recruitment and retention of a challenging population: Lessons learned and design implications

Oncology palliative care: access barriers: bibliometric study

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