Perspectives on Recruitment and Representativeness in Forensic Psychiatric Research.
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ABSTRACT:
SUBMITTER: Pedersen SH
PROVIDER: S-EPMC8247569 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundResearchers are increasingly using social media advertisements to recruit participants because of their many advantages over traditional methods. Although there is growing evidence for the effectiveness and cost-effectiveness of social media recruitment in the health sciences, no studies have yet examined this in the context of suicide prevention, which remains to be a highly stigmatized and sensitive topic.ObjectiveThis study aims to recruit a general community sample to complete a survey on suicide literacy, stigma, and risk via Facebook advertisements. Specifically, we aim to establish the performance of the advertisements, cost-effectiveness, sample representativeness, and the impact of gender-specific advertising on recruiting men into the study.MethodsFrom June 2017 to March 2019, we released Facebook advertisements targeted at adults 18 years or older, residing in the New South Wales (NSW) trial or control regions, and involved in the LifeSpan suicide prevention trial. Cost-effectiveness was examined descriptively using metrics provided by Facebook. Chi-square analyses were conducted to determine demographic differences between our sample and the general NSW population as well as the impact of gender-specific advertisements on gender engagement.ResultsThe 14 Facebook advertisement campaigns reached a total of 675,199 people, yielding 25,993 link clicks and resulting in 9603 individuals initiating the survey (7487 completions) at an overall cost of Aus $2.81 (US $2.01) per participant. There was an overrepresentation of younger (P=.003), female (P=.003), highly educated (P<.001) participants and mental health conditions (P<.001) compared with the total NSW population. The use of male-specific advertisements resulted in a significantly higher proportion of men completing the survey relative to gender-neutral advertisements (38.2% vs 24.6%; P<.001).ConclusionsThis study demonstrates the potential of Facebook to be an effective, low-cost strategy for recruiting a large sample of general community participants for suicide prevention research. Strategies to improve sample representativeness warrant further investigation in future research.
| S-EPMC7644381 | biostudies-literature
Project description:BackgroundInsufficient recruitment of groups underrepresented in medical research threatens the generalizability of research findings and compounds inequity in research and medicine. In the present study, we examined barriers and facilitators to recruitment of underrepresented research participants from the perspective of clinical research coordinators (CRCs).MethodsCRCs from one adult and one pediatric academic medical centers completed an online survey in April-May 2022. Survey topics included: participant language and translations, cultural competency training, incentives for research participation, study location, and participant research literacy. CRCs also reported their success in recruiting individuals from various backgrounds and completed an implicit bias measure.ResultsSurveys were completed by 220 CRCs. CRCs indicated that recruitment is improved by having translated study materials, providing incentives to compensate participants, and reducing the number of in-person study visits. Most CRCs had completed some form of cultural competency training, but most also felt that the training either had no effect or made them feel less confident in approaching prospective participants from backgrounds different than their own. In general, CRCs reported having greater success in recruiting prospective participants from groups that are not underrepresented in research. Results of the implicit bias measure did not indicate that bias was associated with intentions to approach a prospective participant.ConclusionsCRCs identified several strategies to improve recruitment of underrepresented research participants, and CRC insights aligned with insights from research participants in previous work. Further research is needed to understand the impact of cultural competency training on recruitment of underrepresented research participants.
| S-EPMC10514687 | biostudies-literature
Project description:BackgroundEHR phenotyping offers the ability to rapidly assemble a precisely defined cohort of patients prescreened for eligibility to participate in health-related research. Even so, stakeholders in the process must still contend with the practical and ethical challenges associated with research recruitment. Patient perspectives on these matters are particularly important given that the success of research recruitment depends on patients' willingness to participate.MethodsWe conducted 15 focus groups (n =?110 participants) in four counties in diverse regions of the southeastern US: Appalachia, the Mississippi Delta, and the Piedmont area of North Carolina. Based on a hypothetical study of a behavioral intervention for type 2 diabetes, we asked about the acceptability and appropriateness of direct investigator versus physician-mediated contact with patients for research recruitment, and whether patients should be asked to opt in or opt out of further contact in response to recruitment letters.ResultsFor initial contact, nearly all participants said it would be acceptable for researchers to contact patients directly and three-fourths said that it would be acceptable for researchers to contact patients through their physicians. When we asked which would be most appropriate, a substantial majority chose direct contact. Themes that arose in the discussion included trust and transparency, decision-making power, the effect on research, and the effect on patient care. For response expectations, the vast majority of participants said both opt-in and opt-out would be acceptable-typically finding neither especially problematic and noting that both afford patients the opportunity to make their own decisions.ConclusionsExternal validity relies heavily on researchers' success enrolling eligible patients and failure to reach accrual targets is a costly and common barrier to advancing scientific knowledge. Our results suggest that patients recognize multiple advantages and disadvantages of different research recruitment strategies and place value on the implications not just for themselves, but also for researchers and healthcare providers. Our findings, including rich qualitative detail, contribute to the body of empirical and ethical literature on improving research recruitment and suggest specific ways forward as well as important areas for future research.
| S-EPMC6390331 | biostudies-literature
Project description:To generalize findings on the mechanisms and prognosis in Alzheimer's disease and related dementias (ADRD), it is critical for ADRD research to be representative of the population. Sociodemographic and health characteristics across ethnoracial groups included in the National Alzheimer's Coordinating Center sample (NACC) were compared to the nationally representative Health and Retirement Study (HRS).Baseline NACC data (n = 36,639) and the weighted 2010 HRS wave (N = 52,071,840) were included. We assessed covariate balance by calculating standardized mean differences across harmonized covariates (i.e., sociodemographic, health).NACC participants were older, more educated, with worse subjective memory and hearing, but endorsed fewer depressive symptoms compared to HRS participants. While all racial and ethnic groups in NACC differed from HRS participants in the same way overall, these differences were further amplified between racial and ethnic groups.NACC participants do not represent the U.S. population in key demographic and health factors, which differed by race and ethnicity.HighlightsWe examined selection factors included in NACC studies compared to a nationally representative sample.Selection factors included demographic and health factors and self-reported memory concerns.Results suggest that NACC participants are not representative of the U.S. population.Importantly, selection factors differed across racial and ethnic groups.Findings are suggestive of selection bias within NACC studies.
| S-EPMC10242202 | biostudies-literature
Project description:BackgroundCriminals in Japan with mental disorders face penal servitude in prison or treatment under the Medical Treatment and Supervision Act, depending on their ability to take responsibility for their criminal acts. Forensic psychiatric nurses caring for this group may face various ethical issues.ObjectiveThis study aimed to identify ethical issues forensic psychiatric nurses in Japan encountered.MethodWe used the Ethical Issues Scale to conduct a survey among forensic healthcare ward nurses and analyzed the data using descriptive statistics. We also conducted semistructured interviews with individual nurses who provided signed consent and responded to the initial survey on ethical issues they encountered. These data were analyzed using Berelson's content analysis.ResultsOf 175 nurses, 131 answered our survey. The most frequently encountered ethical issue was "protecting patients' rights and human dignity," and the most disturbing ethical issue was "providing nursing care with possible health risks." Seventy-seven percent of the nurses chose to discuss with peers when resolving the ethical issues. Seventeen nurses who were interviewed described these forensic psychiatric nursing-related ethical distresses and conflicts: difficulty in discharge management, prevention of violence and self-harm, compulsory treatment, patient care, and negative emotions toward patient.ConclusionForensic psychiatric nurses in Japan face difficulties regarding respecting patients' rights. They strive to respect patients' rights by using their expertise as nurses while sharing their difficulties with colleagues. It is important to develop a support system for social reintegration to solve ethical issues.
| S-EPMC8389350 | biostudies-literature
Project description:Self-harm, comprising non-suicidal self-injury, and suicide attempts, is a serious and potentially life-threatening behavior that has been associated with poor life quality and an increased risk of suicide. In forensic populations, increased rates of self-harm have been reported, and suicide is one of the leading causes of death. Aside from associations between self-harm and mental disorders, knowledge on self-harm in forensic psychiatric populations is limited. The purpose of this study was to characterize the clinical needs of a cohort of forensic psychiatric patients, including self-harm and possible risk factors thereof. Participants (N = 98) were consecutively recruited from a cohort of forensic psychiatric patients in Sweden from 2016 to 2020. Data were collected through file information, self-reports, and complemented with semi-structured interviews. Results showed that self-harm was common among the participants, more than half (68.4%) of whom had at some point engaged in self-harm. The most common methods of non-suicidal self-injury were banging one's head or fist against a wall or other solid surface and cutting, and the most common method of suicide attempt was hanging. The most prominent functions of non-suicidal self-injury among the participants were intrapersonal functions such as affect regulation, self-punishment, and marking distress. Self-harm in general was associated to neurodevelopmental disorders (p = 0.014, CI = 1.23-8.02, OR = 3.14) and disruptive impulse-control and conduct disorders (p = 0.012, CI = 1.19-74.6, OR = 9.41), with reservation to very wide confidence intervals. Conclusions drawn from this study are that self-harm was highly prevalent in this sample and seems to have similar function in this group of individuals as in other studied clinical and non-clinical groups.
| S-EPMC8365140 | biostudies-literature
Project description:This paper describes methods used in the project "Orofacial Pain Prospective Evaluation and Risk Assessment" (OPPERA) and evaluates sociodemographic characteristics associated with temporomandibular disorders (TMD) in the OPPERA case-control study. Representativeness was investigated by comparing sociodemographic profiles of OPPERA participants with population census profiles of counties near study sites and by comparing age and gender associations with TMD in OPPERA and the 2007 to 2009 US National Health Interview Survey. Volunteers aged 18 to 44 years were recruited at 4 US study sites: 3,263 people without TMD were enrolled into the prospective cohort study; 1,633 of them were selected as controls for the baseline case-control study. Cases were 185 volunteers with examiner-classified TMD. Distributions of some demographic characteristics among OPPERA participants differed from census profiles, although there was less difference in socioeconomic profiles. Odds of TMD was associated with greater age in this 18 to 44 year range; females had 3 times the odds of TMD as males; and relative to non-Hispanic-Whites, other racial groups had one-fifth the odds of TMD. Age and gender associations with chronic TMD were strikingly similar to associations observed in the US population. Assessments of representativeness in this demographically diverse group of community volunteers suggest that OPPERA case-control findings have good internal validity.Demographic associations with TMD were consistent with population benchmarks and with other studies, suggesting broad applicability of these OPPERA findings. Greater occurrence of TMD in non-Hispanic-Whites than in other racial/ethnic groups and the lack of a socioeconomic gradient contradicts the disparities seen in many other health conditions.
| S-EPMC3666856 | biostudies-literature
Project description:BackgroundOnline recruitment is feasible, low-cost, and can provide high-quality epidemiological data. However, little is known about the feasibility of recruiting postpartum women online, or sample representativeness.ObjectiveThe current study investigates the feasibility of recruiting a population of postpartum women online for health research and examines sample representativeness.MethodsTwo samples of postpartum women were compared: those recruited online as participants in a brief survey of new mothers (n=1083) and those recruited face-to-face as part of a nationally representative study (n=579). Sociodemographic, general health, and mental health characteristics were compared between the two samples.ResultsObtaining a sample of postpartum women online for health research was highly efficient and low-cost. The online sample over-represented those who were younger (aged 25-29 years), were in a de facto relationship, had higher levels of education, spoke only English at home, and were first-time mothers. Members of the online sample were significantly more likely to have poor self-rated health and poor mental health than the nationally representative sample. Health differences remained after adjusting for sociodemographic differences.ConclusionsPotential exists for feasible and low-cost e-epidemiological research with postpartum populations; however, researchers should consider the potential influence of sample nonrepresentativeness.
| S-EPMC5362693 | biostudies-literature
Project description:IntroductionFailure to achieve accrual goals is a common problem in health-related research. Electronic health records represent a promising resource, offering the ability to identify a precisely defined cohort of patients who meet inclusion/exclusion criteria. However, challenges associated with the recruitment process remain and institutional policies vary.MethodsWe interviewed researchers, institutional review board chairs, and primary care physicians in North Carolina and Tennessee. Questions focused on strategies for initiating contact with potentially eligible patients, as well as recruitment letters asking recipients to opt in versus opt out of further communication.ResultsWhen we asked about initiating contact with prospective participants, qualitative themes included trust, credibility, and established relationships; research efficiency and validity; privacy and autonomy; the intersection between research and clinical care; and disruption to physician-researcher and physician-patient relationships. All interviewees said it was acceptable for researchers to contact patients through their physicians; most said it was acceptable for researchers to contact patients directly. Over half chose contact through physicians as more appropriate. Regarding recruitment letters, qualitative themes included the quality of the participant pool; privacy and control; research efficiency and representativeness; and patients' opportunity to make their own decisions. All interviewees said asking recipients to opt in to further communication was acceptable; nearly all said opt out was acceptable. Similar proportions chose each approach as more appropriate.ConclusionsComparing these results to our previous research with patients reveals potential differences in stakeholder perspectives. We offer suggestions for developing balanced approaches that respect patients and facilitate the advancement of science.
| S-EPMC8057488 | biostudies-literature
Project description:Abstract Objective Research recruitment through patient portals (ie, patient-facing, web-based clinical interfaces) has the potential to be effective, efficient, and inclusive, but best practices remain undefined. We sought to better understand how patients view this recruitment approach. Materials and Methods We conducted 6 focus groups in Atlanta, GA and Seattle, WA with members of patient advisory committees and the general public. Discussions addressed acceptability of patient portal recruitment and communication preferences. Focus groups were audio-recorded, transcribed, and analyzed using deductive and inductive codes. Iterative team discussions identified major themes. Results Of 49 total participants, 20 were patient advisory committee members. Participants’ mean age was 49 (range 18–74); 59% identified as non-Hispanic White and 31% as Black/African American. Participants were supportive of patient portal recruitment and confident that messages were private and legitimate. Participants identified transparency and patient control over whether and how to participate as essential features. Concerns included the frequency of research messages and the ability to distinguish between research and clinical messages. Participants also discussed how patient portal recruitment might affect diversity and inclusion. Discussion Focus group participants generally found patient portal recruitment acceptable and perceived it as secure and trustworthy. Transparency, control, and attention to inclusiveness were identified as key considerations for developing best practices. Conclusion For institutions implementing patient portal recruitment programs, continued engagement with patient populations can help facilitate translation of these findings into best practices and ensure that implemented strategies accomplish intended goals.
| S-EPMC9897173 | biostudies-literature