The inclusion of ethnically diverse long-term care family caregivers is significant in research, particularly in social work research because of the importance placed on diverse populations. However, the inclusion of diverse populations poses a set of unique recruitment and retention challenges for researchers. This process can be particularly complicated when multiple long-term care recruitment partners are utilized and when the project involves a multi-phase data collection plan with different minority recruitment needs for each phase. In our work we learned that: (a) research teams should plan for gender and ethnic differences in the ways that family caregivers think about and approach research involvement, (b) socioeconomic disadvantages and ethnic differences have both independent and interactive effects on research participation, (c) physical and emotional "costs," as well as financial costs, of caregiver participation should be given more attention in informed consent procedures, and (d) agency collaboration for minority recruitment and retention requires continuous nurturing and sustained effort by all members of the research team.
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http://dx.doi.org/10.1300/J083v47n03_09 | DOI Listing |
Women Birth
January 2025
Department of Nursing and Midwifery Education and Research, King Edward Memorial Hospital, Subiaco, Australia; School of Nursing, Curtin University, Bentley, Australia.
Problem: It is unknown whether the deployment of registered nurses to assist midwives in the provision of postnatal care eases the burden of workforce shortages.
Background: The largest public maternity health service in Western Australia began employing registered nurses in 2022 to assist midwives with the provision of postnatal care on maternity wards in response to staffing shortages, exacerbated by COVID-19.
Aim: To explore midwives' and registered nurses' experiences of providing postnatal care on maternity wards together.
Alzheimers Dement
December 2024
Neuroscience and Aging Research Unit, Institute of Advanced Medical Research and Training, College of Medicine, University of Ibadan, Ibadan, Nigeria.
Achieving greater diversity and inclusion in global dementia research requires the inclusion of underrepresented geographic, ethnic and regional populations such as indigenous Africans. The ADSP is a collaborative global initiative that includes sample collection across diverse populations, data generation including whole genome sequencing in over 120,000 individuals and multi-omics, the collating of rich phenotypic information, data harmonization, and unified data management and quality control. These datasets are being analyzed to accelerate our understanding of AD neurobiology with implications for better risk prediction and discovery of novel precision diagnostics and therapeutics.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
FTD Disorders Registry, King of Prussia, PA, USA.
Background: Frontotemporal degeneration (FTD) is a complex, heterogeneous group of fatal adult-onset disorders which lead to progressive dysfunction in behavior, motor symptoms, language, and/or cognition. While advances in research are cause for optimism, trials are hindered by the availability of participants. As FTD clinical trials typically require co-participation of a study partner, care partner perspectives on research are critical to understanding how to support recruitment and retention.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
College of Medicine, University of Ibadan, Ibadan, Oyo State, Nigeria.
Background: The "Recruitment and Retention for Alzheimer's Disease Diversity Genetic Cohorts in the ADSP (READD-ADSP)" is developing a resource to expand ancestral diversity in Alzheimer disease (AD) studies to dissect the genetic architecture of AD across different populations. In addition to US sites, READD-ADSP includes four US sites and nine countries in sub-Saharan Africa through the Africa Dementia Consortium (AfDC). The overall goal of READD-ADSP is to identify genetically driven targets in diverse groups including African Americans and Hispanic/Latinos in US, and Africans.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
German Center for Neurodegenerative Diseases (DZNE), Magdeburg, Germany.
Background: Frequent and remote cognitive assessment may improve sensitivity to subtle cognitive decline associated with preclinical Alzheimer's disease (AD). Our objective was to evaluate the feasibility, reliability, and construct validity of repeated remote memory assessment in late middle-aged and older adults.
Method: Participants were recruited from longitudinal aging cohorts to complete medial temporal lobe-based memory paradigms (Object-In-Room Recall [ORR], Mnemonic Discrimination for Objects and Scenes [MDT-OS], Complex Scene Recognition [CSR]) using the neotiv application on a smartphone or tablet at repeated intervals over one year.
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