Challenges Confronting Students With Disabilities in Research Engagement in South Africa

This chapter presents physical barriers, lack of adequate funding, poor supervision, delay in feedback, communication difficulties, negative attitudes, and impairment-related disadvantages as the unique challenges confronted by students with disabilities when doing research in higher education in South Africa. Data were collected through scanning South African and international literature available on Google scholar, ProQuest, in books, journal articles, and online resources. Informed by decolonial theory, the invisible underlying causes of the challenges are discussed. Suitable assistive devices, listening to students with disabilities' voices, and more time allocation are suggested as strategies that could improve research engagement for students with disabilities.

Humanitarian and Developmental Research Engagement during COVID-19

Background: Floods and storms are the most common natural hazards. Communities in remote, riparian areas are the most vulnerable in such disasters, particularly when local populations lack reliable energy and early warning systems for hazard response. Our study will investigate energy and flood resilience issues in such communities and use remote methods to enable research continuity in intra and post-pandemic contexts. Methods/Design: A two-round Delphi process will be used to interview 16 participants from Nepal and Greece to understand their priorities and preferred solutions for energy and flood resilience issues. In Round One we aim to understand the current capabilities and vulnerabilities of our focus communities in these areas. In Round Two, we seek feedback on potential options that are either market-available/evidence-informed solutions or co-developed conceptual systems. Remotely deployed semi-structured interviews are the principal method for both rounds. The Round Two structured comparative review also employs choice-based conjoint analysis and SCORE analysis. Discussion: By collecting information from both professionals and non-experts, we aim to understand what options are perceived as reliable, realistic and appropriate for flood-prone communities. The remote research design enables continuity and community access to development-focused research and its outputs, and a flexible, cost-effective approach for researchers and partner organizations.

“State of the Mewnion”: Practices of Feral Cat Care and Advocacy Organizations in the United States

Over the last several decades, feral cats have moved from the fringes to the mainstream in animal welfare and sheltering. Although many best practice guidelines have been published by national non-profits and veterinary bodies, little is known about how groups “in the trenches” actually operate. Our study sought to address that gap through an online survey of feral cat care and advocacy organizations based in the United States. Advertised as “The State of the Mewnion,” its topics included a range of issues spanning non-profit administration, public health, caretaking and trapping, adoptions of friendly kittens and cats, veterinary medical procedures and policies, data collection and program efficacy metrics, research engagement and interest, and relationships with wildlife advocates and animal control agencies. Respondents from 567 organizations participated, making this the largest and most comprehensive study on this topic to date. Respondents came primarily from grassroots organizations. A majority reported no paid employees (74.6%), served 499 or fewer feral cats per year (75.0%), engaged between 1 and 9 active volunteers (54.9%), and did not operate a brick and mortar facility (63.7%). Some of our findings demonstrate a shared community of practice, including the common use of a minimum weight of 2.0 pounds for spay/neuter eligibility, left side ear tip removals to indicate sterilization, recovery holding times after surgery commonly reported as 1 night for male cats and 1 or 1 nights for females, requiring or recommending to adopters of socialized kittens/cats that they be kept indoor-only, and less than a quarter still engaging in routine testing of cats for FIV and FeLV. Our survey also reveals areas for improvement, such as most organizations lacking a declared goal with a measurable value and a time frame, only sometimes scanning cats for microchips, and about a third not using a standardized injection site for vaccines. This study paints the clearest picture yet available of what constitutes the standard practices of organizations serving feral and community cats in the United States.

A Relationship-Oriented Model of Research Participation: The Brain Health Community Registry

Historically excluded and minoritized populations are significantly under-included in health studies of Alzheimer’s disease and related dementias (ADRD) despite bearing a disproportionate burden of disease—evidenced by higher incidence, prevalence, and poorer health outcomes. Meaningful progress toward identifying and alleviating causes of health disparities in ADRD necessitate effective and scalable approaches for broadening inclusion in research. Rigorous studies evaluating research participation among minoritized populations are limited and have predominantly focused on individual-level factors and behavioral change (i.e. religiosity, willingness). These approaches frequently overlook the influence of unequally distributed structural and social determinants on participation despite the compounded financial, social, emotional, and logistical consequences that result from ADRD. Using an intersectional and social justice lens, we developed the Participant and Relationship-Oriented Research Engagement Model, which characterizes research as a form of relationship and extends social determinants frameworks to the context of research participation. We report core components of the model and its application in the design and preliminary evaluation of the Brain Health Community (BHC) Registry, which features proactive and systematic evaluation of potential unmet needs among prospective participants, and connections to relevant services (i.e. respite care, adaptive devices). Preliminary testing of the model and participant feedback on the BHC suggest it is a feasible approach to research engagement, and that associated assessment tools and resource protocols are acceptable and sufficiently adaptable to heterogeneous sets of unmet needs. Primary challenges include ongoing assessment of engagement and routine changes in service ability, which can be addressed through community-based resource networks.

A New Normal? Continued Impact of COVID19 on Alzheimer’s Clinical Trials Research

The COVID-19 pandemic has led to unprecedented challenges in Alzheimer’s disease and related dementias (ADRD) clinical trials research. Scientists continue to grapple with the potential and multifaceted consequences of COVID-19. This presentation will discuss strategies used at a U.S. Alzheimer’s Disease Research Center to implement virtual methods to counter COVID-19’s impact on safety for continued research engagement; address the disparate impact by age, race, and ethnicity for online accessibility; and plans for virtual engagement in future research. As scientists navigate lasting implications of COVID-19, future study planning, design, and management will likely be altered. Specifically, increased awareness of participant-centered approaches, inclusion of psychosocial implications, and focus on ways to meet older adults’ unique needs of virtual accessibility will be needed. We must be intentional to counter COVID-19’s lasting impact on ADRD clinical trials research while maintaining rigor and reproducibility to uphold and progress advances toward treatment and cures for ADRD.

Patterns Among Same-Sex Spousal Couples: Diverse Sociocultural Representation in Alzheimer’s Research

Emerging evidence shows that understanding characteristic patterns between study partners (SP) and subjects can inform initiatives to diversify representation of sociocultural groups in ADRD research. This study examined same-sex spousal dyads with the goal of identifying bellwethers of opportunities to build diversity in ADRD research. Descriptive analysis of The Aging, Demographics and Memory Study (ADAMS), which enrolled a subset of subjects from the Health and Retirement Study and a SP for each subject. Eight same-sex spousal couples were among 718 SP-subject dyads (1.1%). Gay men were 3 times as likely to be spousal SPs (n=6) than lesbians (n=2), even though women far outnumber men overall. Patterns in caregiving and other characteristics also differed. Same-sex couples are underrepresented in ADRD research. Patterns among those enrolled suggest masculine and feminine norms may drive research engagement. This is discussed in the context of increasing sociocultural diversity in ADRD research across key social groups.

Gender disparity in publication records: a qualitative study of women researchers in computing and engineering

Background The current paper follows up on the results of an exploratory quantitative analysis that compared the publication and citation records of men and women researchers affiliated with the Faculty of Computing and Engineering at Dublin City University (DCU) in Ireland. Quantitative analysis of publications between 2013 and 2018 showed that women researchers had fewer publications, received fewer citations per person, and participated less often in international collaborations. Given the significance of publications for pursuing an academic career, we used qualitative methods to understand these differences and explore factors that, according to women researchers, have contributed to this disparity. Methods Sixteen women researchers from DCU’s Faculty of Computing and Engineering were interviewed using a semi-structured questionnaire. Once interviews were transcribed and anonymised, they were coded by both authors in two rounds using an inductive approach. Results Interviewed women believed that their opportunities for research engagement and research funding, collaborations, publications and promotions are negatively impacted by gender roles, implicit gender biases, their own high professional standards, family responsibilities, nationality and negative perceptions of their expertise and accomplishments. Conclusions Our study has found that women in DCU’s Faculty of Computing and Engineering face challenges that, according to those interviewed, negatively affect their engagement in various research activities, and, therefore, have contributed to their lower publication record. We suggest that while affirmative programmes aiming to correct disparities are necessary, they are more likely to improve organisational culture if they are implemented in parallel with bottom-up initiatives that engage all parties, including men researchers and non-academic partners, to inform and sensitise them about the significance of gender equity.

Promoting Connections Through Creative Approaches to Research Engagement for Older African Americans

This presentation will feature innovative retention approaches that contributed to sustaining connections to older Black participants in the long-standing Healthier Black Elders Center (HBEC). The HBEC aims to address and reduce health disparities through research and education. In 2020, this outreach has included a telephone outreach program and a weekly social group, “The Party Line,” to promote connections and collect data on mental health, coping mechanisms and newly acquired skills, as well as health care access including access to masks, testing and tele-health. The presentation will also describe tailored approaches to initiating a Community Advisory Board and programming in Flint, MI and creative efforts to retain participants in Detroit, MI, thus ensuring the relationships between researchers and older community members are sustained despite program modifications.

Structure, Process and Outcomes in Patient Engagement

Although patient engagement in research is gaining acceptance by researchers and funding bodies, descriptions of implementation options and associated outcomes are limited. In this appreciative inquiry of the 12 institutions involved in the Great Plains Collaborative of the Patient-Centered Outcomes Research Network (PCORnet), we interviewed patient engagement officers and patient partners to enhance understanding of approaches to organizational structure, research engagement processes, and associated outcomes of the engaged research. Multiple structures have been identified including operational affiliations in both hospital and multiple university departments. Professional affiliations of patient engagement officers vary widely, including nurses, social workers, and public health professionals, among others. Patient engagement processes also vary, but with the majority using forms of advisory boards. All sites reported outcomes of their work including completed and/or ongoing research and co-authored publications.