Motivating and constraining factors for research participation in Scottish care homes

2021 ◽  
Vol 23 (4) ◽  
pp. 1-7
Author(s):  
Emma Law ◽  
Rosalie Ashworth ◽  
Lewis Killin ◽  
Peter Connelly
Keyword(s):  
Research Participation ◽  
Care Homes ◽  
Research Engagement ◽  
Research Involvement ◽  
Present Experience ◽  
Short Survey ◽  
Facilitators And Barriers ◽  
Workplace Pressures ◽  
Integrate Research

Background/aims: Knowledge and research about research participation in the context of care homes is sparse. This article describes the level of research engagement for care homes in Scotland, and the facilitators and barriers to this. Methods: A short survey was distributed to care homes in Scotland. A total of 130 care homes returned completed surveys. Results: As of 2014, only 7' of care homes had past or present experience of research. Lack of time and workplace pressures were key obstacles to increasing research within care homes. Respondents recognised that residents could benefit from research but there were also concerns about the risks of research involvement. Conclusions: The survey provides much needed evidence that care homes are being overlooked in research, leading to exclusion of staff and residents. More work is needed to help integrate research into care homes without adding to the demands and pressures of the workplace.

scholarly journals Hispanic Perspectives on Parkinson’s Disease Care and Research Participation

2021 ◽  
pp. 1-11
Author(s):  
Lisa Damron ◽  
Irene Litvan ◽  
Ece Bayram ◽  
Sarah Berk ◽  
Bernadette Siddiqi ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Native Language ◽  
Research Participation ◽  
Ongoing Research ◽  
Research Recruitment ◽  
Research Opportunities ◽  
Research Engagement ◽  
Wide Range ◽  
Tertiary Center

Background: Hispanics are under-represented in Parkinson’s disease (PD) research despite the importance of diversity for results to apply to a wide range of patients. Objective: To investigate the perspective of Hispanic persons with Parkinson disease (PWP) regarding awareness, interest, and barriers to participation in research. Methods: We developed and administered a survey and qualitative interview in English and Spanish. For the survey, 62 Hispanic and 38 non-Hispanic PWP linked to a tertiary center were recruited in Arizona. For interviews, 20 Hispanic PWP, 20 caregivers, and six physicians providing service to Hispanic PWP in the community were recruited in California. Survey responses of Hispanic and non-Hispanic PWP were compared. Major survey themes were identified by applying grounded theory and open coding. Results: The survey found roughly half (Q1 54%, Q2 55%) of Hispanic PWP linked to a tertiary center knew about research; there was unawareness among community Hispanic PWP. Most preferred having physician recommendations for research participation and were willing to participate. Hispanics preferred teams who speak their native language and include family. Research engagement, PD knowledge, role of family, living with PD, PD care, pre-diagnosis/diagnosis emerged as themes from the interview. Conclusion: Barriers exist for participation of Hispanic PWP in research, primarily lack of awareness of PD research opportunities. Educating physicians of the need to encourage research participation of Hispanic PWP can address this. Physicians need to be aware of ongoing research and should not assume PWP disinterest. Including family members and providing research opportunities in their native language can increase research recruitment.

scholarly journals Intrinsic vs. Extrinsic Motivation as Drivers for Early Engagement in Research by Medical Students

2020 ◽  
Author(s):  
Yassar Alamri ◽  
Erik Monasterio ◽  
Lutz Beckert ◽  
Tim J Wilkinson
Keyword(s):  
Medical Students ◽  
Extrinsic Motivation ◽  
Self Determination Theory ◽  
Self Determination ◽  
Future Studies ◽  
Research Engagement ◽  
Research Activities ◽  
Research Involvement ◽  
Key Factor

Abstract BackgroundA student’s motivation is a key factor in their success in undertaking an education endeavour. However, how this relates to involvement in research by medical students is unclear.MethodsAn electronic questionnaire was sent to all medical students at our institution. To ascertain students’ motivation to undertake research, they were asked an open-ended question to describe the single major factor that would encourage them to get involved in research as a medical student. A framework of self-determination theory was used to deductively code the responses as intrinsic motivation (‘IM’; e.g., interest/passion) or extrinsic motivation (‘EM’; e.g. improving CV). The two groups were then contrasted in relation to their research engagement.ResultsA total of 348 students were included in the survey, of whom 204 were coded as IM responses, and 144 were coded as EM responses. Students who engaged in extra-curricular research activities were more likely to report an underlying EM (48% vs. 36%, p = 0.03). They were also older (23.7 ± 3.5 vs. 21.9 ± 3.7, p = 0.005), and more likely to have completed a prior research degree (15% vs. 3%, p = 0.01).ConclusionIn this study, EM was a bigger influencer on research involvement by medical students than IM. Future studies should explore promoters of IM, and include longitudinal data in order to assess whether EM students continue to be involved in research long-term.

scholarly journals How Returning Aggregate Research Results Impacts Interest in Research Engagement and Planned Actions Relevant to Health Care Decision Making: Cohort Study (Preprint)

2018 ◽  
Author(s):  
Elissa R Weitzman ◽  
Kara M Magane ◽  
Lauren E Wisk
Keyword(s):  
Information Seeking ◽  
Research Participation ◽  
Future Research ◽  
Patient Centered ◽  
Research Results ◽  
Research Engagement ◽  
Patient Reported ◽  
Virtuous Cycle ◽  
Interest In Research ◽  
Reaction Patterns

BACKGROUND Collection of patient-reported outcomes measures (PROs) may augment clinical data and inform health research, improving care, yet approaches to sustaining interest among patient cohorts in research participation are needed. One approach may involve returning aggregate research results (ARRs), which may help patients contextualize personal experiences, prompt conversations with providers or family, and encourage information seeking. This model has been demonstrated for Web-based patient-centered registries. Studies with clinical cohorts may further elucidate the model, its impacts on interest in research participation and planned actions, and potential for participants to experience this as helpful or harmful—gap areas. OBJECTIVE We sought to investigate the impacts of returning ARRs comprising summaries of PROs and clinical metrics to parents of children with rheumatic disease, assessing interest in future research participation among parents who viewed ARRs and plans for acting on returned information. Further, we sought to investigate reactions to viewing ARRs and how these reactions impacted planned actions. METHODS Clinical and PRO data were obtained about children in a national clinical disease registry, summarized, and processed into annotated infographics, comprising ARRs for children’s parents. Parents who viewed ARRs (n=111) were surveyed about the information’s perceived value and their reactions. Reaction patterns were summarized using principal components analysis (PCA), and associations among reaction patterns and interest in research participation and planned actions were estimated using multivariate logistic regression. RESULTS Parental endorsement of the value of ARRs for understanding their child’s condition and making care decisions was high (across 10 topics for which ARRs were shared, 42.2%-77.3% of the parents reported information was “very valuable”). Most (58/111, 52.3%) parents reported being more interested in participating in research after viewing ARRs, with the remainder reporting that their interest levels were unchanged. Reactions to viewing ARRs reflected experiencing validation/affirmation and information burden based on PCA. Reactions were not associated with child demographic or clinical characteristics and PROs, except that parents from households with less education reported greater information burden than those from more educated households (P=.007). In adjusted models, parents with higher validation/affirmation scores had increased odds of reporting heightened interest in research participation (adjusted odds ratio [AOR] 1.97, 95% CI 1.18-3.30), while higher information burden scores were associated with decreased odds of planned discussions with their child (AOR 0.59, 95% CI 0.36-0.95) and increased odds of planned discussions with providers (AOR 1.75, 95% CI 1.02-3.00). CONCLUSIONS Returning ARRs may foster a “virtuous cycle” of research engagement, especially where ARRs are experienced favorably and affect plans to share and discuss ARRs in support of a child’s chronic disease care and treatment. Reactions to ARRs vary with education level, underscoring the need for attention to equity for this model.

scholarly journals Music Therapist Experiences of a Randomized Controlled Trial as Clinician Researchers

2020 ◽  
Vol 57 (3) ◽  
pp. 315-352
Author(s):  
Amanda K Henley ◽  
Elizabeth Collier ◽  
Kim Robertson ◽  
Marial A Biard ◽  
Kathryn Bruno ◽  
...  
Keyword(s):  
Randomized Controlled Trial ◽  
Professional Growth ◽  
Controlled Trial ◽  
Research Participation ◽  
Music Therapists ◽  
Music Therapist ◽  
Written Responses ◽  
Roles And Responsibilities ◽  
Randomized Controlled ◽  
Research Involvement

Abstract Music therapy clinicians bring an important perspective to the design and conduct of clinically meaningful studies. Unfortunately, there continue to be roadblocks that hinder clinician involvement in research and the development of successful partnerships between academic researchers and practicing clinicians. To help grow clinician involvement, it is important that research teams share their experiences. As such, the purpose of this qualitative study was to share music therapists’ perspectives about their experience of working as a research clinician on a large multisite randomized controlled trial. 10 board-certified music therapists provided written responses to 6 data-generating questions about: (a) reasons for participating, (b) perceived challenges and benefits, (c) experiences of quality assurance monitoring, (d) professional growth, (e) value of research, and (f) advice for clinicians considering research involvement. Using thematic content analysis, we identified primary themes and subthemes for each question (20 themes; 30 subthemes). Qualitative analysis revealed not only common challenges, such as reconciling clinical and research responsibilities, but also benefits, including continued professional growth, greater understanding of research processes, and research participation as a way to advocate and advance the profession. Finally, for clinicians interested in becoming involved in research, therapists noted the importance of having workplace support from a mentor, supervisor, and/or administrator; seeking out available resources; and knowing roles and responsibilities before initiating research involvement. Findings offer important insight and recommendations to support the involvement of clinicians in research and support further exploration of clinician involvement in dissemination efforts to improve translation and uptake of research into practice.

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

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 625-625
Author(s):  
Andrea Gilmore Bykovskyi ◽  
Haley Fuhr ◽  
Shannon Mullen ◽  
Laura Block ◽  
Clark Benson ◽  
...  
Keyword(s):  
Social Determinants ◽  
Unmet Needs ◽  
Research Participation ◽  
Assessment Tools ◽  
Systematic Evaluation ◽  
Preliminary Evaluation ◽  
Brain Health ◽  
Research Engagement ◽  
Health Community ◽  
The Brain

Abstract 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.

Barriers and Facilitators to Participation in Long-Acting Injectable PrEP Research Trials for MSM, Transgender Women, and Gender-Nonconforming People of Color

2021 ◽  
Vol 33 (6) ◽  
pp. 465-482
Author(s):  
Sameena Azhar ◽  
Xiangyu Tao ◽  
Vaidehi Jokhakar ◽  
Celia B. Fisher
Keyword(s):  
Research Participation ◽  
Transgender Women ◽  
People Of Color ◽  
Women And Gender ◽  
Web Based ◽  
Gender Nonconforming ◽  
Hiv Research ◽  
Facilitators And Barriers ◽  
And Gender ◽  
Long Acting

We collected 216 responses from sexually active MSM, transgender women, and gender-nonconforming (GNC) people of color through a web-based survey to understand the facilitators and barriers to research participation in a hypothetical LAI PrEP trial. In adjusted models, these items were found to be significantly associated with research participation likelihood: ever participated in HIV research study; comfort with taking daily pill; comfort with providing urine sample; and concerns over potential side effects of shot. Asian participants were more concerned about others knowing they were being recruited than were Black and Latinx respondents F(2, 216) = 3.98; p < .05. Asian respondents were also less comfortable with being recruited at organizations serving communities of color than Black and Latinx respondents, F(2, 216) = 5.10; p < .05. Cisgender respondents were more comfortable with being recruited by a friend or colleague than were transgender/GNC respondents, F(1, 215) = 4.8; p < .05.

scholarly journals Insights From African American Older Adults on Brain Health Research Engagement: “Need to See the Need”

2020 ◽  
pp. 073346482090200
Author(s):  
Shoshana H. Bardach ◽  
Markeda Yarbrough ◽  
Charlene Walker ◽  
Doris L. Alfred ◽  
Eseosa Ighodaro ◽  
...  
Keyword(s):  
Older Adults ◽  
African American ◽  
Health Research ◽  
Research Participation ◽  
Elevated Risk ◽  
Brain Health ◽  
Research Engagement ◽  
Disease Research ◽  
Dementia Research ◽  
Barriers And Opportunities

African Americans (AAs) have an elevated risk of developing dementia, yet are underrepresented in clinical research. This project uses a community-engaged photovoice approach to add to existing understanding of barriers and facilitators to AA participation in Alzheimer’s disease research and identify strategies to enhance engagement. Three AA research advocates served as community facilitators to identify and guide groups of AA adults through an eight to nine session photovoice project. Group sessions involved discussions and sharing of images pertaining to various prompts in the area of brain health and research participation. Sessions were audiotaped and transcribed verbatim. Participants identified three categories of barriers to AA research participation: (a) Mistrust, (b) avoidance and fear of acknowledging problems, and (c) seeing the risks of research but not the need. Participants shared suggestions and approaches for ameliorating each of these barriers. This process revealed unique insights into barriers and opportunities for increasing AA engagement in aging and dementia research.

scholarly journals Exploring factors associated with research involvement of undergraduate students at the College of Medicine and Health Sciences, University of Rwanda

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Eric Mugabo ◽  
Lotta Velin ◽  
Richard Nduwayezu
Keyword(s):  
Undergraduate Students ◽  
Undergraduate Research ◽  
Research Participation ◽  
Health Sciences ◽  
Mean Value ◽  
Sub Saharan Africa ◽  
Research Support ◽  
Factors Associated ◽  
Research Involvement ◽  
The Mean

Abstract Background Early involvement of students in research processes is an important step in professional development and can increase the academic output of the university. Previous studies indicate low research involvement amongst undergraduate students, however limited research has been done in sub-Saharan Africa. This study aimed to describe the level of research involvement amongst undergraduate students at the College of Medicine and Health Sciences (CMHS) at University of Rwanda (UR) and to assess factors associated with research involvement. Methods This cross-sectional study covered the three CMHS campuses. A survey was shared in class WhatsApp groups from July to September 2020. Data were analyzed using Stata IC 16.0 with descriptive statistics and Fisher’s exact test. P-values < 0.05 were considered statistically significant. Results In total, 324 students participated with the mean age being 23.3 (standard deviation 2.27). Males constituted 65.1% of respondents vs. 33.3% females. The largest portion of respondents were from the School of Medicine and Pharmacy (46.6%), and Medicine was the most frequent department (33.3%). On a Likert scale from 1 to 10, 60.0% of the respondents thought that research was 10/10 important for undergraduate students, with the mean value being 8.8. Rating their interest in taking part in research during undergraduate studies, 48.2% scored it 10/10, with the mean value being 8.57. 80.3% of respondents had attended a research module, course, or workshop; however, only 48.8% had participated in a research project and 72.0% of them had been involved in data collection. Inadequate knowledge about research processes and lack of mentors were the main barriers to research participation in 48.0 and 40.2% of respondents respectively. Establishment of a UR-Undergraduate research support center (77.2%), and involving students in ongoing UR projects (69.4%) were the most frequent suggestions to improve students’ research participation. Conclusion Undergraduate students at the CMHS in the UR have a large research interest, yet their involvement is currently low. Limited knowledge about research processes and shortage of mentors remains potent barriers to participation. Inviting undergraduate students to partake in ongoing projects and establishing a UR undergraduate research support center are recommended to strengthen undergraduate research experience at the UR-CMHS.

scholarly journals Perceptions and Preferences Regarding Multiple Sclerosis Research Among Racial and Ethnic Groups

2021 ◽  
Author(s):  
Daniela A. Pimentel Maldonado ◽  
April Moreno ◽  
Mitzi J. Williams ◽  
Lilyana Amezcua ◽  
Shawn Feliciano ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
African American ◽  
Ethnic Groups ◽  
Legal Status ◽  
Minority Groups ◽  
Quality Care ◽  
Strong Support ◽  
Research Participation ◽  
Poor Quality ◽  
Research Engagement

Abstract Background: For unclear reasons, minorities have been historically underrepresented in multiple sclerosis (MS) clinical trials. We hypothesized that different perceptions and preferences about research participation among racial and ethnic groups contribute to this imbalance. Methods: Members of the MS Minority Research Engagement Partnership Network developed a Web-based survey in English and Spanish on research impressions, concerns, and preferences regarding study attributes among people with MS. Invitations to take the survey were distributed by network members and partner organizations. Results: We included 2599 participants with MS (2111 White, 215 African American; 188 Hispanic). Consistently disliked study attributes included potential harms to health and confusing study information. Compared with White and non-Hispanic participants, respectively, African American (odds ratio [OR] = 2.05, P ≤ .001) and Hispanic (OR = 1.79, P = .003) participants were more concerned about being used by the research team. Hispanic participants were more concerned about research participation carrying risks to their legal status (OR = 1.70, P = .001). Hispanic (OR = 3.18, P ≤ .001) and African American (OR = 5.51, P ≤ .001) participants were more likely to prefer for the study to benefit their own racial/ethnic group. A top concern across all groups was not being fully informed about the research. Conclusions: We found strong support for research across racial and ethnic groups; however, minority groups have specific concerns regarding mistrust, receiving poor-quality care, unemployment, health insurance, and legal status. Investigators wanting to recruit a diverse study population are advised to show how they have addressed these concerns and to communicate how the research will advance the science and literature and result in better care and/or other benefits to underrepresented communities.

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