Browsing by Author "Hathaway, Elizabeth"

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    Factors influencing the participation of Black and White Americans in Alzheimer’s disease biomarker research
    (Wiley, 2022-12-07) Eliacin, Johanne; Hathaway, Elizabeth; Wang, Sophia; O’Connor, Caitlin; Saykin, Andrew J.; Cameron, Kenzie A.; Psychiatry, School of Medicine
    Introduction: Alzheimer's disease (AD) is a public health priority. AD biomarkers may vary based on race, but the recruitment of diverse participants has been challenging. Methods: Three groups of Black and White participants with and without prior research advocacy or participation were interviewed individually or in focus groups to better understand perspectives related to AD biomarker research participation. A rapid qualitative data analytic approach was used to analyze the data. Results: Identified barriers to AD biomarker research participation included hesitancy due to fear, distrust of research and researchers, lack of relevant knowledge, and lack of research test results disclosure. Drivers for engagement in biomarker research procedures included knowledge about research, AD, and related clinical procedures, perceived benefits of participation, and outreach from trusted sources. Discussion: Participants' comments related to the need for diversity in research and desire for results disclosure suggest opportunities to engage Black individuals. Highlights: Black Americans experience more salient barriers to Alzheimer's disease (AD) biomarker research participation.Concerns about research diversity influence research participation decisions.Research test disclosure may affect research participation and retention.
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    Front-line Nursing Home Staff Provide Insight on Advance Care Planning in a Crisis
    (Elsevier, 2022) Kaehr, Ellen; Gowan, Tayler; Unroe, Kathleen; Rattray, Nicholas; Hathaway, Elizabeth; Medicine, School of Medicine
    Introduction/Objective: The dynamic changes stemming from the COVID-19 pandemic brought instability in advance care planning (ACP). ACP includes eliciting and documenting goals, values, and preferences for medical treatments, and requires considerable skill and resources. The goal of this study is to describe the nursing home staff experience with ACP including barriers and facilitators to goals of care discussions, which were revisited for all residents during nursing home COVID-19 outbreaks in 2020. Design/Methodology: This cross-sectional interview-based study interviewed 17 nursing home staff who facilitated ACP with residents and families during an initial COVID-19 outbreak, representing 7 Midwest nursing homes. Semi-structured telephone interviews were conducted (November 2020-April 2021), and included the Patient Health Questionaire-4 (PHQ4) and Impact of Event Scale-6 (IES-6) to explore the emotional impact of the pandemic. Qualitative thematic analysis was carried out to investigate the nursing home staff experience with goals of care discussions including the psychological impact on staff. Results: Nursing home staff described barriers to successful advance care planning in a crisis such as personal protective equipment (PPE), visitor restrictions, and lack of disease specific clinical knowledge. Self-reported stress was high, with 53% of participants screening positive for potential severe depression and anxiety (PHQ-4 total score ≥ 9) and 29% screening positive for possible post-traumatic stress disorder (PTSD) based on the IES-6 (mean score ≥ 1.75). Interview data offered evidence of the sources and nature of psychological impact of a COVID-19 outbreak. Participants experienced decreased stress when they reported increased knowledge, increased experience, decreased mortality, resolution of outbreak, and access to vaccination. Conclusion/Discussion: Nursing home staff described pandemic advance care planning as impersonal and uncomfortable compared to prior experiences. In future crises, maintaining in person conversations or equivalent interactions and supporting staff with adequate clinical knowledge and personal mental health resources is important in ACP.