IU Indianapolis ScholarWorks :: Browsing by Subject "Research participation"

Browsing by Subject "Research participation"

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Barriers and facilitators to participating in Alzheimer’s disease biomarker research in Black and White older adults
(Wiley, 2023-06-05) Eliacin, Johanne; Polsinelli, Angelina J.; Epperson, Francine; Gao, Sujuan; Van Heiden, Sarah; Westmoreland, Glenda; Richards, Ralph; Richards, Mollie; Campbell, Christopher; Hendrie, Hugh; Risacher, Shannon L.; Saykin, Andrew J.; Wang, Sophia; Medicine, School of Medicine
Introduction: The study examined Black and White prospective participants' views of barriers to and facilitators of participation in Alzheimer's disease (AD) biomarker research. Methods: In a mixed-methods study, 399 community-dwelling Black and White older adults (age ≥55) who had never participated in AD research completed a survey about their perceptions of AD biomarker research. Individuals from lower socioeconomic and education backgrounds and Black men were over-sampled to address perspectives of traditionally under-represented groups. A subset of participants (n = 29) completed qualitative interviews. Results: Most participants expressed interest in biomarker research (overall 69%). However, Black participants were comparatively more hesitant than White participants (28.9% vs 15.1%), were more concerned about study risks (28.9% vs 15.1%), and perceived multiple barriers to participating in brain scans. These results persisted even after adjusting for trust and perceived knowledge of AD. Information was a primary barrier (when absent) and incentive (when provided) for AD biomarker research participation. Black older adults desired more information about AD (eg, risk, prevention), general research processes, and specific biomarker procedures. They also desired return of results to make informed decisions about their health, research-sponsored community awareness events, and for researchers to mitigate the burden placed on participants in research (eg, transportation, basic needs). Conclusion: Our findings increase representativeness in the literature by focusing on individuals with no history of AD research experience and those from traditionally underrepresented groups in research. Results suggest that the research community needs to improve information sharing and raising awareness, increase their presence in the communities of underrepresented groups, reduce incidental costs, and provide valuable personal health information to participants to increase interest. Specific recommendations for improving recruitment are addressed. Future studies will assess the implementation of evidence-based, socioculturally sensitive recruitment strategies to increase enrollment of Black older adults into AD biomarker studies. HIGHLIGHTS: Individuals from under-represented groups are interested in Alzheimer's disease (AD) biomarker research. After adjusting for trust and AD knowledge, Black participants were still more hesitant .Information is a barrier (when absent) to and incentive (when given) for biomarker studies. Reducing burden (e.g., transportation) is essential for recruiting Black older adults.
Beyond Traditional Newspaper Advertisement: Leveraging Facebook-Targeted Advertisement to Recruit Long-Term Smokers for Research
(JMIR Publications, 2016) Carter-Harris, Lisa; Bartlett Ellis, Rebecca J.; Warrick, Adam; Rawl, Susan; IU School of Nursing
BACKGROUND: Smokers are a stigmatized population, but an important population to reach for the purpose of research. Therefore, innovative recruitment methods are needed that are both cost-effective and efficacious in recruiting this population. OBJECTIVE: The aim of the present article was to evaluate the feasibility of Facebook-targeted advertisement to recruit long-term smokers eligible for lung cancer screening for a descriptive, cross-sectional survey. METHODS: A social media recruitment campaign was launched using Facebook-targeted advertisement to target age and keywords related to tobacco smoking in the Facebook users profile, interests, and likes. A 3-day newspaper advertisement recruitment campaign was used as a comparison. The study that used both recruitment methods aimed to test the psychometric properties of 4 newly developed lung cancer screening health belief scales. Data were collected via cross-sectional survey methodology using an Web-based survey platform. RESULTS: The Facebook-targeted advertisements were viewed 56,621 times over an 18-day campaign in 2015 in the United States. The advertisement campaign yielded 1121 unique clicks to the Web-based survey platform at a cost of $1.51 per completed survey. Of those who clicked through to the study survey platform, 423 (37.7%) consented to participate; 92 (8.2%) dropped out during completion of the survey yielding a final study pool of 331 completed surveys. Recruitment by newspaper advertisement yielded a total of 30 participants in response to a 3-day advertisement campaign; recruitment efficacy resulted in 10 participants/day at $40.80 per completed survey. Participants represented current (n=182; 51%) and former smokers (n=178; 49%) with a mean age of 63.4 years (SD 6.0). Cost of the advertisement campaign was $500 total for the 18-day campaign. CONCLUSIONS: Recruitment by Facebook was more efficacious and cost-effective compared with newspaper advertisement. Facebook offers a new venue for recruitment into research studies that offer the potential for wider reach at a lower cost while providing privacy and flexibility for potential study participants. The study's findings extend recent work of other researchers who have demonstrated Facebook's utility with younger smokers, and Facebook is an effective tool to recruit older smokers. Furthermore, Facebook is a cost-effective alternative to traditional newspaper advertisement offering a new, affordable venue to recruit large numbers of older smokers efficiently.
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.
Improving recruitment and retention of adolescents and young adults with cancer in randomized controlled clinical trials
(De Gruyter, 2019-04-11) Docherty, Sharron L.; Crane, Stacey; Haase, Joan E.; Robb, Sheri L.; School of Nursing
Participation of adolescents and young adults (AYAs) with cancer in randomized clinical trials (RCTs) is necessary to advance treatments and psychosocial programs. Exploring AYAs experiences in an RCT will inform strategies to support recruitment and retention. A qualitative design was used to study the experiences of 13 AYAs in the Stories and Music for Adolescent and Young Adult Resilience during Transplant I (SMART I) trial. Key themes included: Weighing the Pros and Cons; Randomization Preferences; Completing Measures; and Worthwhile Experience. The experiences of AYAs during RCTs can bring insights that inform the design and management of AYA trials. Strategies include improving assent/consent processes, design of electronic interfaces and encouraging researcher flexibility.
Parental Enrollment Decision-Making for a Neonatal Clinical Trial
(Elsevier, 2021) Weiss, Elliott Mark; Guttmann, Katherine F.; Olszewski, Aleksandra E.; Magnus, Brooke E.; Li, Sijia; Kim, Scott Y. H.; Shah, Anita R.; Juul, Sandra E.; Wu, Yvonne W.; Ahmad, Kaashif A.; Bendel-Stenzel, Ellen; Isaza, Natalia A.; Lampland, Andrea L.; Mathur, Amit M.; Rao, Rakesh; Riley, David; Russell, David G.; Salih, Zeynep N. I.; Torr, Carrie B.; Weitkamp, Joern-Hendrik; Anani, Uchenna E.; Chang, Taeun; Dudley, Juanita; Flibotte, John; Havrilla, Erin M.; O'Kane, Alexandra C.; Perez, Krystle; Stanley, Brenda J.; Shah, Seema K.; Wilfond, Benjamin S.; Pediatrics, School of Medicine
Objective: To describe the parental experience of recruitment and assess differences between parents who participated and those who declined to enroll in a neonatal clinical trial. Study design: This was a survey conducted at 12 US neonatal intensive care units of parents of infants who enrolled in the High-dose Erythropoietin for Asphyxia and encephaLopathy (HEAL) trial or who were eligible but declined enrollment. Questions assessed 6 factors of the parental experience of recruitment: (1) interactions with research staff; (2) the consent experience; (3) perceptions of the study; (4) decisional conflict; (5) reasons for/against participation; and (6) timing of making the enrollment decision. Results: In total, 269 of 387 eligible parents, including 183 of 242 (75.6%) of those who enrolled their children in HEAL and 86 of 145 (59.3%) parents who declined to enroll their children in HEAL, were included in analysis. Parents who declined to enroll more preferred to be approached by clinical team members rather than by research team members (72.9% vs 49.2%, P = .005). Enrolled parents more frequently reported positive initial impressions (54.9% vs 10.5%, P < .001). Many parents in both groups made their decision early in the recruitment process. Considerations of reasons for/against participation differed by enrollment status. Conclusions: Understanding how parents experience recruitment, and how this differs by enrollment status, may help researchers improve recruitment processes for families and increase enrollment. The parental experience of recruitment varied by enrollment status. These findings can guide future work aiming to inform optimal recruitment strategies for neonatal clinical trials.
Parents' Insights into Pediatric Oncology Phase I Clinical Trials: Experiences from Their Child's Participation
(Elsevier, 2021) Crane, Stacey; Croop, James M.; Lee, Jill; Walski, Jamie; Haase, Joan; School of Nursing
Objectives: Phase 1 clinical trials are essential in the development of novel therapies for childhood cancers. Children with cancer can participate in phase 1 clinical trials when no known curative therapy remains. Understanding the experiences of children and their families in these clinical trials can help ensure that participation supports the children's and parents' well-being. This article explores the specific aspects of pediatric oncology phase 1 trials that parents found particularly challenging. Data sources: This qualitative, empirical phenomenology study considered 11 parents' experiences during the time their child with cancer participated in a phase 1 clinical trial. The primary study results were previously reported. This article reports parents' insights into the processes and procedures that occurred as part of participation in a pediatric oncology phase 1 trial. Conclusion: Parents' experiences during the phase 1 clinical trials were primarily positive. However, data analysis revealed five aspects of these trials that were challenging for families: learning about clinical trials, being referred to another institution, research-only procedures, adhering to trial requirements, and oral medications. Implications for nursing practice: Although experiences during phase 1 clinical trials were positive overall, opportunities to enhance children's and parents' experiences warrant attention. Enhancing the education provided to families during recruitment and minimizing the logistical burdens associated with trial requirements through care coordination may alleviate challenges experienced by children and parents.
Participant experiences in phase I pediatric oncology clinical trials
(2017-08-31) Crane, Stacey M.; Haase, Joan E.; Hickman, Susan; Carpenter, Janet S.; Schwartz, Peter
Phase I clinical trials (P1Ts) are the first step in testing new medical therapies in humans, and are essential for developing new and innovative therapies for children with cancer. P1Ts are ethically controversial as they are not intended to directly benefit participants, but are particularly controversial for children with cancer who are only able to participate when there is no known curative therapy for their cancer. Benefits of pediatric oncology P1T participation may include improved quality of life (QOL) and hope. Risks may include fostering unrealistic hope, burdening children with additional medical procedures and toxicities, and limiting the opportunity for palliation. The goal of this dissertation was to investigate the P1T participation experience for children with cancer and their parents by: (1) assessing what is currently known about the participation experience, (2) exploring ways to understand and assess treatment burden and QOL during participation, and (3) interviewing parents about the experience of having a child participate in a P1T. Following a review of the literature, two studies were conducted: a longitudinal pilot study of 13 parent and child dyads who enrolled in a pediatric oncology early phase clinical trial at the recruiting institution, and a phenomenological study of 11 parents of children with cancer who participated in pediatric oncology P1Ts. Key findings included a dearth of research on the experiences of children and parents in pediatric oncology P1Ts. Instead, existing research has focused on consent processes. The longitudinal pilot study provided some insight into experiences of children and parents during trial participation, including that there may be time points when parents’ and children’s perceptions of the child’s quality of life substantively differ. Interviews with parents confirmed some of the anticipated benefits and risks of participation in P1Ts, and highlighted parents’ sense of running out of time to find an effective treatment and needing to use time they have with their child well. Specific challenges in conducting this research were participant attrition due to disease progression and the need for multi-site research to obtain an adequate sample.
Relationship of Trust and Research Engagement
(Indiana Medical Student Program for Research and Scholarship (IMPRS), 2023) Bruns, Rebecca; Vinaixa, Conor; Haywood, Antwione; Ridley-Merriweather, Katherine Ellen; Sotto-Santiago, Sylk
Background/Objective: Lack of trust is a major barrier to research participation and can lead to disparities in health outcomes. Scales that measure trust in healthcare organizations and biomedical research have never been synthesized into a single tool, nor has such a scale been used to assess attitudes regarding trust in a more focused community. This project aims to measure trust in medical researchers and healthcare institutions in Indiana. Methods: A survey was created by combining previously validated trust scales (Shea et al., Mainous et al., and Hall et al.) along with questions about demographic backgrounds. Cognitive interviewing was conducted in three focus groups to finalize survey questions. The questionnaire was sent to participants recruited via email from the All IN for Health registry, a statewide database of volunteers interested in research participation. Results: At the time of analysis, 481 participants had completed the survey. About half of respondents were age 60+, and almost three times more women participated than men. The majority had bachelor's degrees or higher (72.5%). About half of participants agree that healthcare organizations cover up their mistakes. Half disagreed that patients get the same medical treatment regardless of race/ethnicity. Almost one in five respondents (17.4%) believe that medical researchers conduct experiments on people without their knowledge. Conclusion: Preliminary results suggest additional efforts may be needed to foster trust in healthcare research and organizations. Results may not be generalizable to the entire population due to differences in gender, race/ethnicity, and level of education across initial respondents. One limitation is that recruitment using the All IN for Health registry may have produced biased results. Further studies are needed to understand factors that may influence trust. Scientific/Clinical/Policy Implications: Results may influence public outreach and research recruitment to gain trust from Indiana residents and enhance participation in medical research.

Browsing by Subject "Research participation"

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