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1.
J Community Health ; 2024 Oct 13.
Article in English | MEDLINE | ID: mdl-39396205

ABSTRACT

The COVID-19 pandemic led to an increased use of social media, with many people turning to it for social support. Given the varying effects of social media, this study examines how social media use influences the willingness of adults in the State of Florida to participate in COVID-19-related research. The study used data collected through the Florida Statewide Registry for Aging Studies (FSRAS), which included 587 participants who were 25 years and older. The primary outcome variables were COVID-19 treatment and COVID-19 vaccine research. Ordinal logistic regression was used to evaluate the association between social media use and willingness to participate in COVID-19 treatment and vaccination research, adjusting for sociodemographic variables. The analysis did not find a statistically significant relationship between social media use and the likelihood of participating in COVID-19 research. However, significant differences were observed across racial/ethnic groups. Participants who identified as "Hispanic/Latino" (OR-2.44, 95% CI-1.11-5.35, p = 0.03) and "Other" (OR-12.51, 95% CI-1.98-79.22, p = 0.01) were significantly associated with willingness to participate in a COVID-19 treatment research. Similarly, participants of all other races/ethnicities were significantly more willing to participate in research testing COVID-19 vaccines. Additionally, females were more likely to express willingness to participate in COVID-19 vaccine research. Social media use did not significantly affect willingness to participate in COVID-19 treatment and vaccine research; however, racial and ethnic differences significantly influenced willingness to participate. These findings suggest that implementing targeted culturally sensitive recruitment strategies and community engagement efforts can improve participation in COVID-19 research.

2.
J Environ Manage ; 369: 122367, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39232320

ABSTRACT

Carbon sequestration in agricultural soils is essential for sustainable agriculture, contributing to the achievement of the Sustainable Development Goals and combating climate change. The Voluntary Carbon Market (VCM), designed to encourage farmers to implement sequestration practices, is a recent innovation in Europe, in contrast to the well-established American system. Consequently, there is limited understanding of farmers' intentions to participate. The study analyzes farmers' willingness to participate in VCM and the influencing factors through the Extended Theory of Planned Behavior (ETPB). For this purpose, data were collected from 241 Italian farmers located in the Sicily region and the partial least squares structural equation model (PLS-SEM) was applied. The results show that Attitude, Perceived Behavioral Control and Knowledge of VCM have a statistically significant influence on farmers' intention to participate in VCM. In contrast, Subjective Norms and Perceived Environmental Risk do not have a statistically significant influence. Our findings suggest that farmers' intention is strongly influenced by confidence in their capabilities and knowledge of the topic. This should guide policymakers and practitioners to offer extension services and technical assistance, helping farmers understand the potential of the VCM. Indeed, limited knowledge is a major barrier to participation in this initiative.


Subject(s)
Agriculture , Farmers , Intention , Farmers/psychology , Humans , Carbon , Climate Change , Carbon Sequestration , Theory of Planned Behavior
3.
Public Health Nutr ; 26(12): 3266-3277, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37728040

ABSTRACT

OBJECTIVE: To examine parents'/caregivers' willingness to participate and willingness to pay (WTP) for a cost-shared school food program (SFP) and its associated factors. DESIGN: A quantitative survey design was used where WTP for a hypothetical SFP was elicited using a double-bounded dichotomous choice elicitation method. We used a double hurdle (logistic and truncated regression) model to examine WTP and positively or negatively associated factors. SETTING: Saskatoon Public School Division elementary schools situated in high-, mid- or low-median-income neighbourhoods. PARTICIPANTS: Parents or caregivers of children attending grades 1 to grade 8 in the Saskatoon Public School Division elementary schools. RESULTS: 94 % respondents were willing to participate in a SFP while less than two-thirds of participants were willing to pay for such a program. Over 90 % respondents from all the socio-economic groups were willing to participate. Multiple household income earners, higher household income, higher number of children, household food security status and higher academic attainment of parents'/caregivers predicted greater willingness to pay. Mean willingness to pay was $4·68 (CAN), and households reporting moderate or severe food insecurity were likely to be willing to pay significantly less for a SFP. CONCLUSION: A cost-shared program might be financially sustainable in Canada if community characteristics such as household food insecurity status, economic participation of women and average household size are kept in mind while determining the price of the program.


Subject(s)
Income , Parents , Child , Humans , Female , Canada , Schools , Caregivers , Surveys and Questionnaires
4.
J Environ Manage ; 334: 117480, 2023 May 15.
Article in English | MEDLINE | ID: mdl-36774901

ABSTRACT

Greater efforts are required to educate the public about marine conservation as the marine environment continues to deteriorate over time. A way to remotely travel during the pandemic is provided by virtual reality technologies in marine ecotourism. In order to present a theoretical framework that explains consumers' propensity to participate in virtual reality technology, this study draws on the theories of perceived risk, trust, and attitude. An online survey with 451 respondents was administered in Singapore and structural equation modeling was applied to analyze the data. The results reflect that perceived health risk, perceived financial risk, perceived social risk, and perceived performance risk, mediated by trust and attitude, have a significant influence on consumers' willingness to participate in virtual reality technologies in marine ecotourism. After analyzing their total effects, trust was found to have the highest effect on willingness to participate, followed by attitude, perceived social risk, perceived financial risk, perceived health risk, and perceived performance risk. Overall, the present research offers new perspectives on comprehending the drivers of willingness to participate, as well as implicating policies to raise public awareness of marine conservation, as well as to raise more money to support marine conservation initiatives.


Subject(s)
Attitude , Virtual Reality , Surveys and Questionnaires , Trust , Consumer Behavior
5.
Behav Res Methods ; 55(3): 1275-1291, 2023 04.
Article in English | MEDLINE | ID: mdl-35641681

ABSTRACT

Surveys are a fundamental tool of empirical research, but they suffer from errors: in particular, respondents can have difficulties recalling information of interest to researchers. Recent technological developments offer new opportunities to collect data passively (i.e., without participant's intervention), avoiding recall errors. One of these opportunities is registering online behaviors (e.g., visited URLs) through tracking software ("meter") voluntarily installed by a sample of individuals on their browsing devices. Nevertheless, metered data are also affected by errors and only cover part of the objective information, while subjective information is not directly observable. Asking participants about such missing information by means of web surveys conducted in the moment an event of interest is detected by the meter has the potential to fill the gap. However, this method requires participants to be willing to participate. This paper explores the willingness to participate in in-the-moment web surveys triggered by online activities recorded by a participant-installed meter. A conjoint experiment implemented in an opt-in metered panel in Spain reveals overall high levels of willingness to participate among panelists already sharing metered data, ranging from 69% to 95%. The main aspects affecting this willingness are related to the incentive levels offered. Limited differences across participants are observed, except for household size and education. Answers to open questions also confirm that the incentive is the key driver of the decision to participate, whereas other potential problematic aspects such as the limited time to participate, privacy concerns, and discomfort caused by being interrupted play a limited role.


Subject(s)
Behavior , Citizen Science , Internet , Motivation , Surveys and Questionnaires , Volunteers , Spain , Volunteers/psychology , Educational Status , Family Characteristics , Privacy , Humans , Time Factors , Software , Reproducibility of Results , Citizen Science/methods , Male , Female , Middle Aged , Personality , Attitude
6.
BMC Med Res Methodol ; 22(1): 323, 2022 12 16.
Article in English | MEDLINE | ID: mdl-36526978

ABSTRACT

BACKGROUND: Research about the decision to participate in a clinical study has tended to be limited to single indications and has focused on narrow sets of study and participant characteristics. This study applied stated preference methods to understand the clinical trial design attributes that most influence willingness to participate and how this varied with participant characteristics. METHODS: Adults residing in the US, China, or Poland with a self-reported diagnosis of cancer, heart disease, migraine, rheumatoid arthritis, or multiple sclerosis completed an online survey. Participants were asked whether they would participate in clinical studies defined by seventeen attributes within five categories (payment/support, administration/procedures, treatment-related, study location/time commitment, and data collection/feedback). Participants saw six different hypothetical clinical study profiles. Depending on their participation decision to an initial clinical study profile, the subsequent five questions had one design attribute (randomly selected per question) consecutively improved or deteriorated to elicit preferences. A logistic regression was used to determine which participant characteristics influenced participation decisions. A latent class logit model was used to identify how the influence of study design features varied between participants and whether groups of participants with similar preferences could be identified. RESULTS: The survey was completed by 487 participants (32% China, 35% Poland, 33% US; 8%-19% per indication). Willingness to participate was found to be a function of participant age, certain elements of quality of life, and previous treatment experience, in particular number of lines of treatment received and experience of adverse events. Willingness to participate was influenced by study design features such as payment, study duration, and time commitment - both the overall time and whether the time was at home or away from home, with the latter being particularly relevant to participants experiencing fatigue due to their disease. CONCLUSIONS: This study quantifies how study designs influence willingness to participate and how this varies with participant types. These findings suggest that it is how an indication influences quality of life and treatment experience, rather than the indication alone, that impacts participation rates, opening the way for insights that are transferrable across indications, which may be particularly useful when considering rare diseases.


Subject(s)
Quality of Life , Research Design , Adult , Humans , Logistic Models , Self Report , Surveys and Questionnaires , Clinical Trials as Topic
7.
AIDS Behav ; 26(5): 1504-1516, 2022 May.
Article in English | MEDLINE | ID: mdl-34997386

ABSTRACT

HIV remission trials often require temporary stopping of antiretroviral therapy (ART)-an approach called analytic treatment interruption (ATI). Trial designs resulting in viremia raise risks for participants and sexual partners. We conducted a survey on attitudes about remission trials, comparing ART resumption criteria (lower-risk "time to rebound" and higher-risk "sustained viremia") among participants from an acute HIV cohort in Thailand. Analyses included Wilcoxon-Ranks and multivariate logistic analysis. Most of 408 respondents supported ATI trials, with slightly higher approval of, and willingness to participate in, trials using time to rebound versus sustained viremia criteria. Less than half of respondents anticipated disclosing trial participation to partners and over half indicated uncertainty or unwillingness about whether partners would be willing to use PrEP. Willingness to participate was higher among those who rated higher trial approval, lower anticipated burden, and those expecting to make the decision independently. Our findings support acceptability of ATI trials among most respondents. Participant attitudes and anticipated behaviors, especially related to transmission risk, have implications for future trial design and informed consent.


Subject(s)
HIV Infections , Viremia , Anti-Retroviral Agents/therapeutic use , Attitude , Causality , HIV Infections/drug therapy , Humans , Surveys and Questionnaires , Viral Load , Viremia/drug therapy
8.
J Environ Manage ; 290: 112552, 2021 Jul 15.
Article in English | MEDLINE | ID: mdl-33892231

ABSTRACT

Stormwater has immense impacts on urban flooding and water quality, leaving the marginalized and the impoverished disproportionately impacted by and vulnerable to stormwater hazards. However, the environmental health concerns of socially and economically marginalized individuals are largely underestimated. Through regression analysis of data from three longitudinal surveys, this article examines if and how an individual's race, gender, and education level help predict one's concern about and willingness to participate in stormwater management. We found that people of color, women, and less-educated respondents had a greater willingness to participate in stormwater management than White, male, and more-educated respondents, and their concern about local stormwater hazards drove their willingness to participate. Our analysis suggests that physical exposure and high vulnerability to stormwater hazards may shape an individual's concern about and willingness to participate in stormwater management.


Subject(s)
Floods , Water Quality , Educational Status , Environmental Health , Female , Humans , Male , Rain
9.
BMC Med Res Methodol ; 20(1): 67, 2020 03 19.
Article in English | MEDLINE | ID: mdl-32192447

ABSTRACT

BACKGROUND: Clinical trials are essential to improve knowledge of anesthesia and perioperative medicine. Unfortunately, many studies face participant-recruitment issues and fail to include the planned number of participants. There is limited published data about how information delivered about the study or how the experiences and attitudes of prospective participants influence willingness to participate. The purpose of this study was to identify such factors in the domain of anesthesia care. METHODS: We performed a cross-sectional study at the Geneva University Hospitals (Switzerland) using a newly developed paper-based questionnaire on a sample of outpatients with a recent hospital stay and that were aged over 18 years, confident speaking French and free of any disease that could hinder participation. We explored patient personal factors, such as current health, past exposure to clinical research and anesthesia, as well as study-related factors. Six different scenarios for clinical studies were assessed. Linear regression modeling was used to assess the specific association between personal and study-related factors and willingness to participate in the studies described in the scenarios. RESULTS: On the 1318 eligible patients, 398 fully completed the questionnaire. Multivariable adjustment revealed that factors related to altruistic values (ß, 9.6, 95% CI 3.4 to 15.7, P = 0.002), to the feeling of benefiting from a more effective treatment (ß, 4.7, 95% CI 0.2 to 9.2, P = 0.041) and to the absence of fear about double blinding (ß, 5.7, 95% CI 1.3 to 10.2, P = 0.012) were positively associated with willingness to participate. Conversely, concerns about drug-related adverse effects (ß, - 11.7, 95% CI - 16.9 to - 6.5, P < 0.001) and anxiety about surgery (ß, - 5.2, 95% CI - 10.0 to - 0.5, P = 0.031) were negatively associated with willingness to participate. CONCLUSION: Our study was based on vignettes illustrating typical scenarios of clinical trials performed in anesthesia. However, their similarities with real studies still remains hypothetical and our results should be interpreted as such. Nevertheless, the study contributes to improve understanding of factors that may act as incentives or barriers to participation in clinical trials. It highlights the importance of providing appropriate information and reassurance to patients.


Subject(s)
Anesthesia , Motivation , Adult , Clinical Trials as Topic , Cross-Sectional Studies , Humans , Middle Aged , Patient Participation , Prospective Studies , Surveys and Questionnaires , Switzerland
10.
BMC Public Health ; 20(1): 1789, 2020 Nov 25.
Article in English | MEDLINE | ID: mdl-33239018

ABSTRACT

BACKGROUND: We anticipate large efficacy trials of novel HIV vaccines that have shown acceptable safety profiles. We determined willingness to participate (WTP) in future HIV vaccine efficacy trials among HIV negative female sex workers (FSWs) in Kampala Uganda. METHODS: We conducted a case control study in the Good Health for Women Project cohort. Cases received HIV prevention services and, enrolled in a 12-month simulated vaccine efficacy trial (SiVET) that used Hepatitis B vaccine; they underwent vaccine trial procedures as would be in an actual trial. Controls received similar health services but did not enroll in SiVET. We matched cases and controls (ratio 2:1) for age and duration in the cohort. We described a hypothetical HIV vaccine trial to cases (after 9 months in SiVET) and controls including trial attributes: randomization, delaying pregnancy, frequent blood draws (80-100mls) and study visits for 3 years. We compared WTP and willingness for vaccine trial attributes by case/control using chi-squared or Fisher's exact tests and fitted conditional logistic regression models to determine independent predictors of WTP. RESULTS: We analyzed data for 311 volunteers (219 cases, 92 controls); median age 27 years (IQR: 23-32), 39.9% had ≥secondary education, 57.9% had sex work as their main job and 81.9% used illicit drugs. Compared to controls, more cases had lived in the community for > 1 year, (85.4% vs 64.1%; p < 0.001) and fewer cases reported illicit drug use in the past 3 months, (79.0% vs 89.1%; p = 0.03). Overall, 278 (89.4%) volunteers expressed WTP in an HIV vaccine trial, the most common reason being hope of protection against HIV. More cases than controls (58.2% vs 44.7%) did not need to consult anyone before trial participation (p = 0.03); cases were more willing to delay pregnancy (99.0% vs 94.0%; p = 0.03). Combining vaccine trial attributes, 249 (89.6%) of the 278 accepted all attributes. After controlling for case/ control status women with secondary education or higher expressed less WTP (aOR 0.17; 95% CI 0.04-0.80). CONCLUSION: FSWs in Kampala demonstrated high WTP. Prior experience with trial requirements like contraception may improve their uptake during actual trials. Family involvement is important for those without prior trial experience.


Subject(s)
AIDS Vaccines/administration & dosage , Clinical Trials as Topic , Patient Participation/psychology , Sex Workers/psychology , Adult , Case-Control Studies , Female , Forecasting , HIV Infections/prevention & control , Humans , Sex Workers/statistics & numerical data , Uganda , Young Adult
11.
BMC Med Ethics ; 21(1): 77, 2020 08 24.
Article in English | MEDLINE | ID: mdl-32831090

ABSTRACT

BACKGROUND: Few studies have examined factors associated with willingness of people living with HIV (PLHIV) to participate in HIV treatment clinical trials in Sub-Saharan Africa. We assessed the factors associated with participation of PLHIV in HIV treatment clinical trials research at a large urban clinical and research facility in Uganda. METHODS: A mixed methods study was conducted at the Infectious Diseases Institute (IDI), adult HIV clinic between July 2016 and January 2017. Data were collected using structured questionnaires, focused group discussions with respondents categorised as either participated or never participated in clinical trials and key informant interviews with IDI staff. A generalized linear model with a logit link function was used for multivariate analyses while the qualitative data were summarized using a thematic approach. RESULTS: We enrolled a total of 202 and analysed 151 participants, 77 (51%) of whom were male with mean age of 41 years. The majority 127 (84%) expressed willingness to participate in treatment clinical trials if given an opportunity. At bivariate analysis, willingness to participate was significantly associated with respondents' perception of a satisfactory compensation package (P-value < 0.002, 0.08-0.56), special status accorded (P-value < 0.001, 0.05-0.39) and belief that their health status would improve (P-value< 0.08, 0.03-0.58) while on the clinical trial. At multivariate analysis, a satisfactory compensation package (P-value< 0.030, 0.08-0.88) and special status accorded in clinical trials (P-value< 0.041, 0.01-0.91) remained significant. The qualitative data analysis confirmed these findings as participants valued the privilege of jumping the clinic waiting queues and spending less time in clinic, the wide range of free tests offered to trial participants, unrestricted access to senior physicians and regular communication from study team. Additionally, free meals offered during clinic visits meant that participants were not in a hurry to go back home. Barriers to participation included the perception that new drugs were being tested on them, fear of side effects like treatment failure and the uncertainty about privacy of their data. CONCLUSION: We found overwhelming willingness to participate in HIV treatment clinical trials. This was largely extrinsically influenced by the perceived material and health-related benefits. Investigators should pay attention to participants' concerns for benefits which may override the need to understand study procedures and risks.


Subject(s)
HIV Infections , Adult , Africa South of the Sahara , Cross-Sectional Studies , Female , HIV Infections/drug therapy , Humans , Male , Surveys and Questionnaires , Uganda
12.
J Environ Manage ; 262: 110243, 2020 May 15.
Article in English | MEDLINE | ID: mdl-32250775

ABSTRACT

Agri-environment schemes (AES) are an important part of agricultural policy within Europe. They seek to achieve important goals with regards to biodiversity and the protection of natural resources while also helping to maintain culturally important landscapes and agricultural practices. Participation rates have been an important area of research into assessing the success of AES. Within Ireland and more broadly across Europe, systematic non-participation in AES has been observed. Certain farm and farmer types have been found more likely to participate. In this paper a contingent valuation exercise is conducted that assesses how AES payment levels impact on the participation decision of farmers. A bivariate probit with sample selection is utilised to account for farmers who are unwilling to participate regardless of payment levels. This allows for a more accurate estimation of farmer willingness-to-accept to participate in the hypothetical AES presented. It also offers insight into the characteristics of farmers who are unlikely to ever participate in these schemes. From the results it appears a significant proportion (30%) of farmers are unlikely to ever participate in AES, with the remaining open to participation depending on the compensation offered. It is argued that increased compensation levels may increase participation rates among some farmers who to date have been unlikely to participate.


Subject(s)
Agriculture , Farmers , Biodiversity , Conservation of Natural Resources , Europe , Humans , Ireland
13.
Niger Postgrad Med J ; 27(3): 196-201, 2020.
Article in English | MEDLINE | ID: mdl-32687119

ABSTRACT

BACKGROUND: Waning donor funding and poor country ownership of HIV care programmes are challenges for the sustainability of care for people living with HIV (PLHIV) in Nigeria. Health insurance presents a viable alternative for funding of HIV care services. This study assessed the determinants of willingness to participate in health insurance amongst PLHIV in a tertiary hospital in South-East Nigeria. METHODS: Across-sectional survey was conducted amongst 371 PLHIV on treatment at Federal Teaching Hospital, Abakaliki, Nigeria, using a semi-structured, interviewer-administered questionnaire. Chi-square test and logistic regression were conducted with SPSS version 20 at 5% level of significance. RESULTS: Respondents were mostly males (51.8%) with a mean age and monthly income of 45.4 ± 10.3 years and $74.1 ± 42, respectively. Majority were willing to participate (82.5%) and to finance health insurance (65.2%). The major reasons cited by those unwilling to participate were poor understanding of how the system works and lack of regular source of income. The predictors of willingness to participate were female gender (adjusted odds ratio [AOR] = 2.9; 95% confidence interval [CI]: 1.6-5.7), being currently unmarried (AOR = 4.3; 95% CI: 2.3-7.8), being self-employed (AOR = 2.2; 95% CI: 1.2-3.9), having family size >5 (AOR = 3.1; 95% CI: 1.7-5.9) and having less than secondary school education (AOR = 4.3; 95% CI: 2.3-7.8). CONCLUSION: Majority of the respondents surveyed were willing to participate in, and finance health insurance. Willingness to participate was more amongst vulnerable subgroups (females, unmarried, self-employed, poorly educated and those with large family size). We recommend the inclusion of health insurance in the care package of PLHIV.


Subject(s)
HIV Infections/drug therapy , Insurance, Health/statistics & numerical data , Patient Participation/statistics & numerical data , Adult , Cross-Sectional Studies , Female , HIV Infections/epidemiology , HIV Infections/psychology , Humans , Male , Middle Aged , Nigeria , Patient Acceptance of Health Care , Patient Participation/psychology , Surveys and Questionnaires , Tertiary Care Centers
14.
Disaster Prev Manag ; 29(4): 445-455, 2020.
Article in English | MEDLINE | ID: mdl-33679011

ABSTRACT

PURPOSE: Research fatigue occurs when an individual or population of interest tires of engaging with research, consequently avoiding further participation. This paper considers research fatigue in the context of the current COVID-19 pandemic, to identify contributory factors and possible solutions for future post-disaster research. METHODOLOGY: We draw on examples from the literature and our own observations from the recruitment and data collection phases of qualitative and quantitative studies, to provide an overview of possible research fatigue in the current COVID-19 pandemic, with implications for future post-disaster research. FINDINGS: People affected by disasters sometimes receive multiple requests for study participation by separate teams who may not necessarily be coordinating their work. Not keeping participants informed of the research process or outcomes can lead to disillusionment. Being overburdened with too many research requests and failing to see any subsequent changes following participation may cause individuals to experience research fatigue. ORIGINALITY: Guidelines for researchers wishing to reduce the occurrence of research fatigue include ensuring greater transparency within research; sharing of results; and using oversight or gatekeeper bodies to aid coordination. Failure to restrict the number of times that people are asked to participate in studies risks poor participation rates. This can subsequently affect the quality of information with which to inform policy-makers and protect the health of the public during the COVID-19 pandemic or other public health disasters/emergencies.

15.
Trop Med Int Health ; 24(3): 264-279, 2019 03.
Article in English | MEDLINE | ID: mdl-30565381

ABSTRACT

OBJECTIVES: To systematically review reasons for the willingness to participate in biomedical human subjects research in low- and middle-income countries (LMICs). METHODS: Five databases were systematically searched for articles published between 2000 and 2017 containing the domain of 'human subjects research' in 'LMICs' and determinant 'reasons for (non)participation'. Reasons mentioned were extracted, ranked and results narratively described. RESULTS: Ninety-four articles were included, 44 qualitative and 50 mixed-methods studies. Altruism, personal health benefits, access to health care, monetary benefit, knowledge, social support and trust were the most important reasons for participation. Primary reasons for non-participation were safety concerns, inconvenience, stigmatisation, lack of social support, confidentiality concerns, physical pain, efficacy concerns and distrust. Stigmatisation was a major concern in relation to HIV research. Reasons were similar across different regions, gender, non-patient or patient participants and real or hypothetical study designs. CONCLUSIONS: Addressing factors that affect (non-)participation in the planning process and during the conduct of research may enhance voluntary consent to participation and reduce barriers for potential participants.


OBJECTIFS: Analyser systématiquement les raisons de la volonté de participer à la recherche biomédicale sur les sujets humains dans les PRFI. MÉTHODES: Cinq bases de données ont été systématiquement recherchées pour des articles publiés entre 2000 et 2017 contenant le domaine de la «recherche sur des sujets humains¼ dans les «PRFI¼ et les déterminantes «raisons de la (non) participation¼. Les raisons mentionnées ont été extraites, classées et les résultats décrits de manière narrative. RÉSULTATS: 94 articles ont été inclus, 44 études qualitatives et 51 études à méthodes mixtes. L'altruisme, les avantages pour la santé personnelle, l'accès aux soins de santé, les avantages pécuniaires, les connaissances, le soutien social et la confiance étaient les principales raisons de la participation. Les principales raisons de la non-participation étaient les problèmes de sécurité, les inconvénients, la stigmatisation, le manque de soutien social, les soucis de confidentialité, la douleur physique, les soucis d'efficacité et la méfiance. La stigmatisation était une préoccupation majeure dans le cadre de la recherche sur le VIH. Les raisons étaient similaires dans les différentes régions, le sexe, les participants patients ou non-patients et les modèles d'étude réels ou hypothétiques. CONCLUSIONS: La prise en compte des facteurs qui affectent la (non) participation au processus de planification et au cours de la recherche peut renforcer le consentement volontaire à la participation et réduire les obstacles pour les participants potentiels.


Subject(s)
Biomedical Research , Patient Participation , Developing Countries , Health Services Accessibility/standards , Humans , Informed Consent/standards
16.
Malar J ; 17(1): 289, 2018 Aug 10.
Article in English | MEDLINE | ID: mdl-30097021

ABSTRACT

BACKGROUND: The extensive research on community members' willingness to support malaria interventions ignores the role of psychosocial determinants. This study assesses the impact of individuals' sense of community (perceptions of community cohesion, altruism, seeking help from neighbours and migrant status) on their willingness to participate in a mosquito control programme using data on 768 individuals from the 2013 RIPS Urban Health and Poverty Survey in poor coastal communities in Accra, Ghana. A contingent valuation experiment was employed to elicit individuals' willingness to support the programme by contributing nothing, labour time/money only or both. RESULTS: Findings show that different dimensions of sense of community related differently with willingness to support the programme. Perceived community cohesion was associated with lower odds while help-seeking from neighbours and being a migrant were associated with higher odds of supporting the programme. Altruism was the only dimension not linked to willingness to participate. CONCLUSIONS: Different dimensions of sense of community are associated with community members' willingness to provide labour, time or both to support the malaria eradication programme. The findings of this study have implications for targeting social relational aspects, in addition to geographical aspects, of communities with malaria-resilient policy and intervention. They also warrant further research on psychosocial factors that predict willingness to support health programmes in urban poor settings.


Subject(s)
Communicable Disease Control , Community Networks/statistics & numerical data , Health Knowledge, Attitudes, Practice , Malaria/prevention & control , Urban Population , Vulnerable Populations/statistics & numerical data , Adolescent , Adult , Female , Ghana , Humans , Male , Middle Aged , Poverty , Urban Health , Young Adult
17.
BMC Med Res Methodol ; 18(1): 163, 2018 12 05.
Article in English | MEDLINE | ID: mdl-30518344

ABSTRACT

BACKGROUND: The demand in biobanking for the collection and maintenance of biological specimens and personal data from civilians to improve the prevention, diagnosis and treatment of diseases has increased notably. Despite the advancement, certain issues, specifically those related to privacy and data protection, have been critically discussed. The purposes of this study are to assess the willingness of stakeholders to participate in biobanking and to determine its predictors. METHODS: A survey of 469 respondents from various stakeholder groups in the Klang Valley region of Malaysia was carried out. Based on previous research, a multi-dimensional instrument measuring willingness to participate in biobanking, and its predictors, was constructed and validated. A single step Structural Equation Modelling was performed to analyse the measurements and structural model using the International Business Machines Corporation Software Package for Social Sciences, Analysis of Moment Structures (IBM SPSS Amos) version 20 with a maximum likelihood function. RESULTS: Malaysian stakeholders in the Klang Valley were found to be cautious of biobanks. Although they perceived the biobanks as moderately beneficial (mean score of 4.65) and were moderately willing to participate in biobanking (mean score of 4.10), they professed moderate concern about data and specimen protection issues (mean score of 4.33). Willingness to participate in biobanking was predominantly determined by four direct predictors: specific application-linked perceptions of their benefits (ß = 0.35, p < 0.001), issues of data and specimen protection (ß = - 0.31, p < 0.001) and religious acceptance (ß = 0.15, p < 0.05) and trust in key players (ß = 0.20, p < 0.001). The stakeholders' willingness to participate in biobanking also involves the intricate relationships between the above-mentioned factors and other predictors, such as attitudes regarding technology, religiosity and engagement. CONCLUSIONS: The findings of this study reaffirmed that stakeholders' willingness to participate in biobanking is a complex phenomenon that should be viewed from a multidimensional perspective. Stakeholder willingness to participate in biobanking is warranted when direct predictors (benefits, issues of data and specimen protection, religious acceptance, and trust in key players) as well as indirect factors are well accounted for.


Subject(s)
Attitude , Biological Specimen Banks/statistics & numerical data , Public Opinion , Surveys and Questionnaires/statistics & numerical data , Biological Specimen Banks/economics , Humans , Malaysia , Models, Theoretical , Multivariate Analysis , Surveys and Questionnaires/economics
18.
AIDS Care ; 30(7): 914-920, 2018 07.
Article in English | MEDLINE | ID: mdl-29347826

ABSTRACT

Essential HIV cure-related clinical trials (HCRCT) have a potentially high-risk profile in terms of participants' health, which could hinder enrollment by people living with HIV (PLWH) and healthcare professionals (HP). The ANRS-APSEC survey is part of the IAS "Towards an HIV cure" initiative, which promotes multidisciplinary research for a safe, affordable and scalable cure. The study objectives were to understand the psychosocial mechanisms underlying PLWH and HP viewpoints about future HCRCT. Six focus group discussions (three with PLWH (n = 21) and three with HP (n = 30)) were held in three French infectious disease units. From these, three perspectives on HCRCT were identified. The first involved beliefs and knowledge associating HCRCT with poorer health and quality of life for PLWH. The second concerned perceptions of HCRCT as a biological and epidemiological flashback to a situation when HIV infection was left uncontrolled. The third was characterized by aspects of historical HIV culture that embrace innovation.


Subject(s)
Anti-HIV Agents/therapeutic use , Attitude of Health Personnel , HIV Infections/drug therapy , Physicians/psychology , Female , HIV Infections/psychology , Humans , Male , Middle Aged , Quality of Life
19.
Nervenarzt ; 89(7): 801-806, 2018 Jul.
Article in German | MEDLINE | ID: mdl-29663021

ABSTRACT

BACKGROUND: With the fourth Act on the amendment of pharmaceutical legal and other regulations it became law in Germany from the beginning of 2017 that under certain conditions, pharmaceutical research will be allowed with persons incapable of giving consent, even if this research may only be beneficial to other sufferers of the same disease, i. e. group beneficial research. OBJECTIVE: We conducted a semistructured, non-representative survey among psychiatric patients and their relatives. PARTICIPANTS AND METHODS: This survey was done for a period of 3 months until the end of September 2017 in the practice of M. H. with successively examined patients and their relatives. Patients incapable of giving consent related to dementia, depression and emergency cases, were excluded. Participants were asked about their attitudes related to evaluation of a) group beneficial research in principle, b) pharmaceutical withdrawal studies and c) research authorization. Sociodemographic and clinical variables were collected. RESULTS AND DISCUSSION: This study included 85 persons and all of them gave their informed consent to participation. The mean age was 70 years, 47% were male, 61% had a university degree and 46% an independent profession. Mild cognitive impairment was diagnosed in 26%. This survey revealed a relatively high basic approval of group beneficial dementia research as well as of pharmaceutical withdrawal studies. In addition, research authorization gained a substantially positive evaluation. Only a few participants were informed about the new law in force since 2017. The present results were drawn from an explorative study with an unrepresentative sample and, therefore, have to be interpreted with caution. They show, however, that in the general population more information and awareness about group beneficial research with persons incapable of giving informed consent should be achieved. The relatively high rate of approval in this study may reveal a widespread feeling of social responsibility; however, reported objections of the participants should also be seriously considered.


Subject(s)
Dementia , Research , Aged , Female , Germany , Humans , Informed Consent , Male , Research/trends , Surveys and Questionnaires
20.
Waste Manag Res ; 36(9): 760-766, 2018 Sep.
Article in English | MEDLINE | ID: mdl-29589517

ABSTRACT

The implementation of a recyclable waste management system is a serious challenge for a society that aims to contribute to sustainability. The first operational step of such system is waste collection. In a number of European countries, the solid waste collection system has changed from the conventional kerbside system to a door-to-door collection. However, this type of waste collection system has not yet been introduced in Greece and its public acceptance prior to potential full implementation needs to be considered. This study aims to investigate the willingness of the residents of a Greek city (Xanthi, Thrace) to change from the existing kerbside collection system and initiate and participate in a door-to-door recyclable waste collection system instead. A questionnaire was designed and distributed randomly to 150 residents of Xanthi and a statistical analysis was then performed to assess the influence of a number of explanatory variables on recycling behaviour and the willingness to participate in a door-to-door collection system. The findings of this study indicate that most of the respondents (72.7%) were willing to participate in a future door-to-door recyclables collection programme in Xanthi. The factors that influenced the respondents' attitude with regard to such a programme were associated with level of education, their beliefs about the effectiveness of the current recycling system and also their attitudes towards recycling issues in general. Age and religion significantly affected recycling frequency. The survey and statistics presented in this article can be used as a model to assess the behaviour of citizens towards recyclable waste management systems worldwide.


Subject(s)
Refuse Disposal , Waste Management , Cities , Europe , Greece , Recycling , Solid Waste
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