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Journal of Nursing Scholarship : An... Mar 2015The purpose of this study was to explore the reasons adult patients seeking emergency department care for minor injuries agree to participate in clinical research and to...
PURPOSE
The purpose of this study was to explore the reasons adult patients seeking emergency department care for minor injuries agree to participate in clinical research and to identify their reservations about participating in a research study.
DESIGN AND METHODS
This is a secondary analysis of data from a longitudinal cohort study of 275 adults who sought emergency department care for physical injury and were followed over 12 months. At the final interview, participants were asked open-ended short-answer questions about their perception of participating in the study. Free text responses were analyzed using conventional content analysis.
FINDINGS
The final sample of 214 participants was composed equally of males and females, predominantly Black (54%) and White (42%), with a mean age of 41 years. Six themes about reasons for participation emerged from free text responses: being asked, altruism, potential for personal benefit, financial gain, curiosity, and valuing or knowledge of research. Most did not report reservations. Those reservations identified included time constraints, confidentiality, and whether patients felt well suited to fulfill the study requirements.
CONCLUSIONS
Although injured patients are identified by the research community as vulnerable, they are willing to participate in research studies for diverse reasons, and their participation is commonly associated with positive experiences.
CLINICAL RELEVANCE
Understanding perceptions of participants' experiences of being in a research study after acute injury can guide researchers to improve future study protocols and recruitment strategies in order to optimize participants' experiences. Recruitment and retention into clinical research studies is essential to build nursing science to enhance the recovery of injured individuals.
Topics: Acute Disease; Adult; Aged; Altruism; Biomedical Research; Confidentiality; Emergency Service, Hospital; Emotions; Female; Humans; Longitudinal Studies; Male; Middle Aged; Motivation; Patient Participation; Perception; Research Subjects; Wounds and Injuries
PubMed: 25599886
DOI: 10.1111/jnu.12120 -
American Journal of Health Promotion :... Feb 2019To review enrollment strategies, participation barriers, and program reach of a large, 2-year workplace intervention targeting sedentary behavior. (Randomized Controlled Trial)
Randomized Controlled Trial
PURPOSE
To review enrollment strategies, participation barriers, and program reach of a large, 2-year workplace intervention targeting sedentary behavior.
APPROACH
Cross-sectional, retrospective review.
SETTING
Twenty-four worksites balanced across academic, industry, and government sectors in Minneapolis/Saint Paul (Minnesota) and Phoenix (Arizona) regions.
PARTICIPANTS
Full-time (≥30+ h/wk), sedentary office workers.
METHODS
Reach was calculated as the proportion of eligible employees who enrolled in the intervention ([N enrolled/(proportion of eligible employees × N total employees)] × 100). Mean (1 standard deviation) and median worksite sizes were calculated at each enrollment step. Participation barriers and modifications were recorded by the research team. A survey was sent to a subset of nonparticipants (N = 57), and thematic analyses were conducted to examine reasons for nonparticipation, positive impacts, and negative experiences.
RESULTS
Employer reach was 65% (56 worksites invited to participate; 66% eligible of 56 responses; 24 enrolled). Employee reach was 58% (1317 invited to participate, 83% eligible of 906 responses; 632 enrolled). Postrandomization, on average, 59% (15%) of the worksites participated. Eighteen modifications were developed to overcome participant-, context-, and research-related participation barriers.
CONCLUSION
A high proportion of worksites and employees approached to participate in a sedentary behavior reduction intervention engaged in the study. Interventions that provide flexible enrollment, graded participant engagement options, and adopt a participant-centered approach may facilitate workplace intervention success.
Topics: Counseling; Cross-Sectional Studies; Environment Design; Exercise; Female; Health Promotion; Humans; Male; Occupational Health; Retrospective Studies; Sedentary Behavior; United States; Workplace
PubMed: 29986592
DOI: 10.1177/0890117118784228 -
BMC Pregnancy and Childbirth Jan 2021Investigation of the microbiome during early life has stimulated an increasing number of cohort studies in pregnant and breastfeeding women that require non-invasive...
BACKGROUND
Investigation of the microbiome during early life has stimulated an increasing number of cohort studies in pregnant and breastfeeding women that require non-invasive biospecimen collection. The objective of this study was to explore pregnant and breastfeeding women's perspectives on longitudinal clinical studies that require non-invasive biospecimen collection and how they relate to study logistics and research participation.
METHODS
We completed in-depth semi-structured interviews with 40 women who were either pregnant (n = 20) or breastfeeding (n = 20) to identify their understanding of longitudinal clinical research, the motivations and barriers to their participation in such research, and their preferences for providing non-invasive biospecimen samples.
RESULTS
Perspectives on research participation were focused on breastfeeding and perinatal education. Participants cited direct benefits of research participation that included flexible childcare, lactation support, and incentives and compensation. Healthcare providers, physician offices, and social media were cited as credible sources and channels for recruitment. Participants viewed lengthy study visits and child protection as the primary barriers to research participation. The barriers to biospecimen collection were centered on stool sampling, inadequate instructions, and drop-off convenience.
CONCLUSION
Women in this study were interested in participating in clinical studies that require non-invasive biospecimen collection, and motivations to participate center on breastfeeding and the potential to make a scientific contribution that helps others. Effectively recruiting pregnant or breastfeeding participants for longitudinal microbiome studies requires protocols that account for participant interests and consideration for their time.
Topics: Adolescent; Adult; Breast Feeding; Female; Florida; Health Knowledge, Attitudes, Practice; Humans; Interviews as Topic; Longitudinal Studies; Middle Aged; Motivation; Pregnancy; Pregnant Women; Research Subjects; Specimen Handling; Young Adult
PubMed: 33472584
DOI: 10.1186/s12884-021-03541-x -
Medicine and Science in Sports and... May 2019Nearly 8 million American adolescents participate in sports. Participation declines in young adulthood.
INTRODUCTION
Nearly 8 million American adolescents participate in sports. Participation declines in young adulthood.
PURPOSE
This study assessed longitudinal effects of high school sport participation and muscle power on young adult bone strength.
METHODS
Two hundred twenty-eight young adults from the Iowa Bone Development Study completed an interscholastic sport participation questionnaire. Current physical activity (PA) behaviors were assessed via questionnaire. Dual x-ray absorptiometry assessed hip areal bone mineral density and was used with hip structure analysis to estimate femoral neck section modulus and hip cross-sectional area. Peripheral quantitative computed tomography provided strength-strain index and bone strength index at 38% and 4% midshaft tibial sites, respectively. Vertical jump estimated muscle power at 17 yr. Sex-specific multiple linear regression predicted young adult bone outcomes based on sport participation groups. Mediation analysis analyzed the effects of muscle power on relationships between sport participation and bone strength.
RESULTS
At follow-up, males participating in any interscholastic sport had greater bone strength than males who did not participate in sport. The explained variability in bone outcomes was 2% to 16%. Females who participated in sports requiring muscle power had greater bone strength than females who did not participate in sports or females who participated in nonpower sports (explained variability was 4%-10%). Muscle power mediated 24.7% to 41% of the effect of sport participation on bone outcomes in males and 19.4% to 30% in females.
CONCLUSIONS
Former male interscholastic sport participants and female interscholastic power sport participants have stronger bones than peers even when adjusting for current PA. Muscle power did not fully explain differences in all bone outcomes, suggesting that sport participation has additional bone health benefits.
Topics: Absorptiometry, Photon; Adolescent; Anthropometry; Bone Density; Female; Humans; Longitudinal Studies; Male; Muscle Strength; Sports; Young Adult
PubMed: 30557192
DOI: 10.1249/MSS.0000000000001870 -
PloS One 2023Psychological studies with children have difficulty recruiting participants and samples are more often selective. Given parental consent for children's participation,...
Psychological studies with children have difficulty recruiting participants and samples are more often selective. Given parental consent for children's participation, this study examined parents' perceived barriers and benefits of participating in studies and associated parental personality and psychopathological characteristics. Since there are hardly any instruments available so far, the study also aimed to develop questionnaires for the systematic and standardized assessment of barriers and benefits. One hundred and nine parents with children < 18 years completed questionnaires on willingness to participate, perceived barriers (Parents' Barriers for Participating in Research Questionnaire, P-BARQ) and benefits (Parents' Benefits for Participating in Research Questionnaire, P-BERQ), personality traits, trait anxiety, and psychopathological characteristics. The P-BARQ and P-BERQ showed overall acceptable model fits (TLI/CFI = .90-.94; RMSEA = .08/.14) and internal consistencies (α = .68-.86). Parents' willingness to own participation in psychological studies and their support for children's participation correlated negatively with perceived barriers to participation (r ≥ ǀ-.32ǀ, p < .001). Parental personality traits (such as agreeableness/openness) showed positive associations with one's own participation (r ≥ .19, p < .005) and negative correlations with perceived barriers to participation (r ≥ ǀ-.24ǀ, p < .001), while parental psychopathological characteristics are more closely related to consent to children's participation (r = .24, p < .05). Parental trait anxiety showed both a positive correlation with perceived barriers (uncertainty) and benefits (diagnostics/help) (r ≥ .20, p < .05). For the willingness to participate in studies, barriers seem to play a more crucial role than the benefits of participation. If more information is given about psychological studies, uncertainties and prejudices can be reduced.
Topics: Humans; Child; Parents; Parental Consent; Surveys and Questionnaires; Personality; Personality Disorders
PubMed: 37352182
DOI: 10.1371/journal.pone.0287339 -
Health Communication Apr 2023The current study was designed to examine effective message strategies that can be employed in designing mediated communication messages to improve clinical trial...
The current study was designed to examine effective message strategies that can be employed in designing mediated communication messages to improve clinical trial research participation. In the study, a total of 300 participants completed an online experiment in which they responded to five different clinical trial recruitment advertisements whose information sources varied in their credentials and race. Overall, peer-featured ads in which previous clinical trial participants communicated their prior experience in clinical trial participation, compared to expert-featured ads in which medical doctors communicated information about clinical trials, led to higher message and topic relevance, higher message credibility, more favorable attitudes toward clinical trials, and higher intentions to participate in future clinical trials. Further, there was a statistically significant interaction among source credentials, racial match (between source and participant), and participant's race on message and topic relevance such that both White and Black participants rated ads from racially mismatched peers highly effective (greater message and topic relevance); however, for doctor featured ads, White participants reported higher message and topic relevance for racially matched (White doctor) ads, and Black participants reported higher message and topic relevance for racially mismatched (White doctor) ads. We discuss theoretical and practical implications.
Topics: Humans; Communication; Attitude; Intention; Health Services Research
PubMed: 34530661
DOI: 10.1080/10410236.2021.1976361 -
BMC Public Health Nov 2019People with activity limitations participate less in society, which may be due to both societal barriers and personal factors. The aim of this study was to examine the...
BACKGROUND
People with activity limitations participate less in society, which may be due to both societal barriers and personal factors. The aim of this study was to examine the role of one specific personal factor, namely the perceptions that people have of their health condition. We hypothesized that perceptions of more personal control and less negative consequences increase the likelihood of participation in social activities and of experiencing autonomy in participation.
METHODS
Survey data of 1681 people with activity limitations participating in a Dutch nationwide panel-study were analyzed by means of logistic and linear regression analyses. Perceptions of the health condition were assessed with the revised Illness Perception Questionnaire (IPQ-R). Social participation was operationalized as doing volunteer work, participating in club activities and meeting friends. Two scales of the Impact on Participation and Autonomy questionnaire were used to assess experienced autonomy regarding participation.
RESULTS
People who perceived more personal control over their health condition were more likely to participate in volunteer work (OR = 1.36) and club activities (OR = 1.35). People who believed their condition to be long-lasting were also more likely to do volunteer work (OR = 1.34), whereas people who reported a better understanding of their condition were more likely to frequently meet friends (OR = 1.19). Perceptions of the health condition explained 14% of the variance in experienced autonomy in participation, in addition to the severity of participants' activity limitations and their age, gender and education level. Especially a belief in more serious consequences, a perception of a long-lasting and less controllable condition, a perception of less understanding of the condition and a greater perceived impact on the emotional state were associated with experiencing less autonomy in participation.
CONCLUSIONS
People with activity limitations who experience less control over their condition participate less in volunteer work and club activities than people who experience more control. Perceptions of the health condition are just as important to explain differences in participation as the severity of people's activity limitations and their socio-demographic characteristics. Health and social care professionals should pay attention to people's perceptions, to help people with activity limitations to participate according to their needs, circumstances, and preferences.
Topics: Adult; Chronic Disease; Cost of Illness; Female; Humans; Logistic Models; Male; Middle Aged; Mobility Limitation; Netherlands; Perception; Personal Autonomy; Recreation; Social Participation; Surveys and Questionnaires; Volunteers
PubMed: 31744483
DOI: 10.1186/s12889-019-7698-9 -
Journal of Urban Health : Bulletin of... Oct 2022Underrepresentation of Black individuals in genetic research is a longstanding issue. There are well-documented strategies to improve the enrollment of Black...
Underrepresentation of Black individuals in genetic research is a longstanding issue. There are well-documented strategies to improve the enrollment of Black participants; however, few studies explore these strategies-as well as the barriers and facilitators for participation-by sampling Black people who have previously participated in genetic research. This study explores the decision-making process of Black adults who have participated in genetic research to identify best practices in the recruitment of Black subjects in genetic research. We conducted 18 semi-structured interviews with Black adults with prior research participation in genetic studies housed at an urban academic medical center in the United States of America (USA). An online survey was conducted with the participants to gather demographic data and information on prior research participation. Trust in research was ascertained with the Corbie-Smith Distrust in Clinical Research Index. Two participants scored high levels of distrust using the validated index. Using thematic content analysis, 4 themes emerged from the interviews: (1) Participants are active players in health system, (2) information is power, and transparency is key, (3) therapeutic alliances and study characteristics facilitate participation, and (4) race pervades the research process. The decision to participate in genetic research for the participants in our study was prompted by participants' internal motivations and facilitated by trust in their doctor, trust in the institution, and ease of participation. Most participants viewed their enrollment in genetic research in the context of their own racial identity and the history of medical racism in the USA.
Topics: Adult; Black or African American; Black People; Genetic Research; Health Knowledge, Attitudes, Practice; Humans; Qualitative Research; United States
PubMed: 35879487
DOI: 10.1007/s11524-022-00664-0 -
JAMA Network Open Oct 2021Ten years after the Mental Health Parity and Addiction Equity Act, patients continue to report insurance-related barriers to specialty mental health care.
IMPORTANCE
Ten years after the Mental Health Parity and Addiction Equity Act, patients continue to report insurance-related barriers to specialty mental health care.
OBJECTIVES
To assess privately insured patients' perceptions of the adequacy of their health plan's provider network (provider network includes physicians, clinicians, other health care professionals, and their institutions that constitute the network), whether practitioners frequently leave plans, and whether practitioner plan participation affected patients' plan choice.
DESIGN, SETTING, AND PARTICIPANTS
A nationally representative, population-based internet survey study of English-speaking US adults participating in KnowledgePanel, an online research panel, was conducted from August to September 2018. Data analysis was performed from November 12, 2020, to May 12, 2021. From a sample of 29 854 panelists aged 18 to 64 years, 19 602 initiated the screener (completion rate of 66%), and 728 met study criteria: adults with private insurance receiving both specialty mental health and medical care in the past year.
EXPOSURE
Health plan's provider network.
MAIN OUTCOMES AND MEASURES
Self-report of plan inadequacy, whether a practitioner left the plan and the participant's responses (stopped treatment, switched practitioner, or continued treatment), and whether participation of a specific practitioner was considered when a health plan was chosen. Experiences with both mental health and medical provider networks were assessed. Analyses were weighted to match the sample to the US population. Weights provided by KnowledgePanel were also adjusted for panel recruitment, attrition, oversampling, and survey nonresponse.
RESULTS
Of a total of 728 study participants, 204 (39%) were aged 18 to 34 years, 504 (61%) were women, 82 (17%) were Hispanic, and 551 (66%) were non-Hispanic White individuals. Serious psychological distress was reported by 262 participants (36%), and 214 participants (29%) also received mental health treatment from a primary care practitioner. Participants rated their mental health provider network as inadequate more frequently than their medical provider network (163 [21%] vs 70 [10%]; odds ratio [OR], 2.69; 95% CI, 1.64-4.40; P < .001). However, among the 193 participants also receiving mental health treatment from a primary care practitioner, there was no significant difference in the ratings of mental health and medical provider networks (44 [14%] vs 18 [9%]; OR, 1.55; 95% CI, 0.65-3.67; P = .32). Sixty participants (8%) reported that a mental health practitioner had left their plan's insurance network in the past 3 years. Of the 523 participants with a choice of plan, 98 (20%) considered whether a specific mental health practitioner was in network before choosing a plan.
CONCLUSIONS AND RELEVANCE
This study's findings suggest that more participants perceived their mental health networks to be inadequate compared with their medical networks. Increasing the availability of mental health treatment in primary care practices may aid plans in constructing adequate mental health provider networks and improve patient access to mental health care.
Topics: Adolescent; Adult; Health Knowledge, Attitudes, Practice; Humans; Insurance, Health; Mental Health; Mental Health Services; Private Sector; Surveys and Questionnaires; United States; Young Adult
PubMed: 34677592
DOI: 10.1001/jamanetworkopen.2021.30770 -
International Journal of Environmental... Sep 2019Theoretical explanation concerning the psychological well-being of elderly adults as they participate in a particular leisure activity has been rare. Based on the theory...
Theoretical explanation concerning the psychological well-being of elderly adults as they participate in a particular leisure activity has been rare. Based on the theory of planned behavior and the technology acceptance model, this study sought to understand the Tai Chi Chuan (TCC) participation influence factors, process, and psychological well-being of Chinese people. A self-developed questionnaire was developed to test the hypotheses of this study. Applying structural equation models, a survey of 769 TCC participations were used to test the theoretical model. The results indicated that perceived usefulness significantly and positively affect respondent attitude, family members' influences significantly and positively affect participants' subjective norm, and resource facilitating conditions significantly and positively affect perceived behavioral control. Perceived behavioral control, attitude, and subjective norm significantly and positively affect TCC participants. The study lends support to the notion that leisure activity participation is vital for elderly adults and their well-being, and it develops a theoretical reference model for better understanding the leisure participation perceptual reasoning processes of elderly adults. Furthermore, the results offer important implications for health policy makers, clinical prevention, and interventions using participation behavior relationships to develop well-constructed leisure programs to attract and inspire participation and, hence, improve the psychological well-being of elderly adults.
Topics: Aged; Aging; China; Female; Health Behavior; Humans; Leisure Activities; Male; Middle Aged; Quality of Life; Tai Ji
PubMed: 31547469
DOI: 10.3390/ijerph16183387