Your browser doesn't support javascript.
loading
Show: 20 | 50 | 100
Results 1 - 20 de 26.574
Filter
1.
Harm Reduct J ; 19(1): 42, 2022 May 02.
Article in English | MEDLINE | ID: mdl-35501857

ABSTRACT

To offer a critical reflection on an impoverished neighborhood in Vancouver, Canada, and their access to oral health care. A review of how a lack of publicly funded oral health care affects the most vulnerable, uninsured, and underserved citizens is performed. Personal and professional accounts on how entrepreneurial innovations of not-for-profit organizations can help to close the gap in access to oral health care are offered using the Vancouver Area Network of drug users (VANDU) and the PHS Community Services Society as case studies in British Columbia. Despite the efforts put forward by not-for-profit organizations such as the VANDU and the PHS Community Services Society, a national oral health care plan is warranted though still not a political imperative. Underserved citizens have a right to oral health care that is compassionate, collaborative, accessible, and affordable.


Subject(s)
Community Participation , Drug Users , British Columbia , Human Rights , Humans
2.
J Neuroeng Rehabil ; 19(1): 42, 2022 May 02.
Article in English | MEDLINE | ID: mdl-35501879

ABSTRACT

BACKGROUND: After amputation, many people become less active, feel lonely and lose independence. Understanding the factors associated with low physical activity levels and participation could contribute to defining key interventions which can support prosthesis users so they can live a more active and socially included lifestyle. This longitudinal observational study aims to assess relationships between physical activity, community participation, prosthetic fit, comfort and user satisfaction using actimetry, 3D scans and questionnaires in a Cambodian cohort of established lower limb prosthesis users. METHODS: Twenty participants (5F:15M, nine transfemoral, eleven transtibial, 24-60 years old and 3-43 years since amputation) were recruited. They completed a questionnaire which included their demographics, community participation, prosthesis satisfaction and comfort at the start of the study, and between three and six months later. Their prosthetic sockets and residual limbs were 3D scanned at the start and end of the study. Accelerometers were embedded under the cosmesis on the shank of the prosthesis, to collect ten weeks of activity data. RESULTS: Participants averaged 4470 steps/day (743-7315 steps/day), and wore their prosthesis for most waking hours, averaging 13.4 h/day (4.5-17.6 h/day). Self-reported measures of activity and hours of wear correlated with these accelerometer data (Spearman's rho rs = 0.59, and rs = 0.71, respectively). Participants who were more active wore their prosthesis for more hours/day (Pearson r = 0.73) and were more satisfied with socket fit (rs = 0.49). A longer residual limb correlated with better community participation (rs = 0.56) and comfort (rs = 0.56). Self-reported community participation did not correlate with a person's activity level (rs = 0.13), or their prosthesis comfort (rs = 0.19), and there was only weak correlation between how important the activity was to an individual, and how often they participated in it (rs = 0.37). A simple 0-10 scale of overall comfort did not provide enough detail to understand the types and severity of discomfort experienced. CONCLUSION: Associations between perceived and measured activity levels correlated with socket satisfaction in this cohort of people with established lower limb amputations. The small sample size means these correlations should be interpreted with caution, but they indicate variables worthy of further study to understand barriers to community engagement and physical activity for prosthesis users in Cambodia, and potentially in other settings.


Subject(s)
Artificial Limbs , Adult , Amputation Stumps , Cohort Studies , Community Participation , Humans , Middle Aged , Young Adult
3.
BMC Geriatr ; 22(1): 309, 2022 Apr 09.
Article in English | MEDLINE | ID: mdl-35397532

ABSTRACT

INTRODUCTION: Increasingly, literature has focused on community participation in places visited by persons living with and without dementia. Earlier research indicates that multiple factors, including socio-demographic aspects and risk perception may influence community participation. AIM AND METHODS: This cross-sectional, explorative study aims to inquire into how places visited, socio-demographic aspects and risks perception are associated with self-rated community participation for persons living with and without dementia (n = 70) in Switzerland. Data was collected through face-to-face interviews with questionnaires (ACT-OUT, MoCA, sociodemographic). First, we investigated whether the number of places visited was correlated with self-rated participation; then we added socio-demographic and risks perception factors with a bivariate analysis; and searched for a model using multinomial logistic regressions. RESULTS: For the group of participants living with dementia, risks of falling (p = .014) and of getting lost (p = .037) were significantly associated with self-rated participation. For the group of participants living without dementia, visiting places outside the home was significantly associated with self-rated participation, especially visiting places in domain D/places for recreational and physical activities (p = .005). DISCUSSION AND CONCLUSIONS: The results of exploring multiple factors and searching for a model highlights the complexity of community participation as a construct. Risks and visiting places for recreational and physical activities seem to play a role in self-rated participation. Mobile interviews might be better suited to gain in-depth understanding on community participation for persons living with dementia.


Subject(s)
Community Participation , Dementia , Cross-Sectional Studies , Dementia/epidemiology , Demography , Humans , Perception
4.
Front Public Health ; 10: 797290, 2022.
Article in English | MEDLINE | ID: mdl-35372206

ABSTRACT

Background: The growing ethical requirement to engage communities with health research has yielded diversification in approaches and targeted audiences. Conventional approaches like community "town-hall meetings," laboratory open-days and focus group discussions, have evolved into new methods and audiences such as community drama and school engagement with health research (SEHR) involving learning interactions between researchers and school students. While engagement practices are diversifying, evaluations of these initiatives are rare in Low- and Middle-Income Countries (LMIC). This article focuses on the use of Participatory Video (PV) to explore the influence of the KEMRI-Wellcome Trust Research Programme's (KWTRP) School Engagement Programme (SEP) on the views and understandings of science and research among Kenyan state secondary school students. Methods: Twelve male and twelve female students from four coeducational schools were provided with film-making kits (1 per school), and a one-day PV training workshop. They prepared 22 short films over 8 weeks depicting their experiences and views of research and engagement and conveying their career aspirations. Schools were selected based on prior SEP participation; two schools having experienced different engagement approaches, and the others with no prior school engagement. Study data comprised footage and participant observation notes. Results: PV provided an opportunity to simultaneously engage and evaluate to inform practice. Through student-led filmmaking, PV stimulated conversations with students about research and engagement, enabling them to share their views in a way they felt was appropriate. These interactions offered an understanding of student gains from engagement, the depth of interaction required to address perceptions held about research and the potential unintended consequences of engagement. PV also provided insights into the context and complexity of life in which engagement is situated. Understanding this context is important because of its potential influence on participation in engagement activities. We draw on these insights to make two recommendations for school engagement practice. First is that PV can provide an enjoyable and insightful means of combining engagement with evaluation. Second, given that time for SEHR is competed for against other important curricular and extracurricular activities, SEHR practitioners must ensure that activities are as beneficial and enjoyable as possible to students.


Subject(s)
Biomedical Research , Communications Media , Community Participation , Female , Humans , Kenya , Male , Schools , Students
5.
Trials ; 23(1): 263, 2022 Apr 05.
Article in English | MEDLINE | ID: mdl-35382844

ABSTRACT

BACKGROUND: Antiretroviral therapy (ART) has led to dramatic improvements in survival for people living with HIV, but is unable to cure infection, or induce viral control off therapy. Designing intervention trials with novel agents with the potential to confer a period of HIV remission without ART remains a key scientific and community goal. We detail the rationale, design, and outcomes of a randomised, placebo-controlled trial of two HIV-specific long-acting broadly neutralising antibodies (bNAbs): 3BNC117-LS and 10-1074-LS, which target CD4 binding site and V3 loop respectively, on post-treatment viral control. METHODS: RIO is a randomised, placebo-controlled, double-blinded prospective phase II study. Eligible individuals will have started ART within 3 months of primary HIV infection and have viral sequences that appear to be sensitive to both bNAbs. It will randomise 72 eligible participants 1:1 to the following arms via a two-stage design. In Stage 1, arm A participants are given dual long-acting (LS-variants) bNAbs infusions, followed by intensively monitored Analytical Treatment Interruption (ATI) (n = 36); in arm B, participants receive placebo infusions followed by ATI. The primary endpoint will be time to viral rebound within 36 weeks after ATI. Upon viral rebound, the participant and researcher are unblinded. Participants in arm A recommence ART and complete the study. Participants in arm B are invited to restart ART and enroll into Stage 2 where they will receive open-label LS bNAbs, followed by a second ATI 24 weeks after. Secondary and exploratory endpoints include adverse events, time to undetectable viraemia after restarting ART, immunological markers, HIV proviral DNA, serum bNAb concentrations in blood, bNAb resistance at viral rebound, and quality of life measures. DISCUSSION: The two-stage design was determined in collaboration with community involvement. This design allows all participants the option to receive bNAbs. It also tests the hypothesis that bNAbs may drive sustained HIV control beyond the duration of detectable bNAb concentrations. Community representatives were involved at all stages. This included the two-stage design, discussion on the criteria to restart ART, frequency of monitoring visits off ART, and reducing the risk of onward transmission to HIV-negative partners. It also included responding to the challenges of COVID-19. TRIAL REGISTRATION: The protocol is registered on Clinical. TRIALS: gov and EudraCT and has approval from UK Ethics and MHRA.


Subject(s)
COVID-19 , HIV Infections , HIV-1 , Broadly Neutralizing Antibodies , Clinical Trials, Phase II as Topic , Community Participation , HIV Antibodies , HIV Infections/diagnosis , HIV Infections/drug therapy , Humans , Prospective Studies , Quality of Life , Randomized Controlled Trials as Topic , SARS-CoV-2 , Treatment Outcome
6.
Subst Abuse Treat Prev Policy ; 17(1): 29, 2022 04 22.
Article in English | MEDLINE | ID: mdl-35459197

ABSTRACT

BACKGROUND: Tobacco control program leaders and their partners, who often present evidence to policymakers, can increase the use of evidence in program and policy development. However, up-to-date evidence from the scientific community about what works is slow to reach leaders. We describe efforts to understand and utilize tobacco control leaders' preferences for receiving evidence and report on resulting dissemination strategies, translational products, and outcomes. METHODS: This work is part of the Advancing Science and Practice in the Retail Environment (ASPiRE) Center, an interdisciplinary research center focused on understanding and evaluating tobacco retail policy. Participants were members of the ASPiRE Community Advisory Board (CAB), comprised of tobacco control leaders from 30 metropolitan areas representing all regions of the US plus nine representatives from leading national tobacco control organizations (N = 39). During meetings in February 2019 and October 2020, all CAB members were invited to participate in live polls consisting of six survey questions each. Questions addressed preferences for receiving scientific evidence and their anticipated use of ASPiRE translational products. Responses were analyzed descriptively and informed translational product development and communications with ASPiRE contact list members (N = 125). ASPiRE email and website interactions were tracked from March 2019 to May 2021 as a complementary indication of content use. RESULTS: Response rates for 2019 and 2020 CAB meetings were 66% (n = 26) and 59% (n = 23), respectively. CAB members indicated preferences for email communication (33%) and webinars (31%), communications once per month (46%), and short-format documents (28%). In response, the team developed translational short-format products including case studies, fact sheets, and research briefs. On average, 52% (SD = 14%) of recipients opened the newsletter and 17% (SD = 9%) clicked a link within the newsletter. Overall, 95% of responding CAB members found the products useful and all responding CAB members reported using them to communicate evidence to policymakers, staff, and coalition members. CONCLUSIONS: Our successful dissemination approach to making evidence more accessible and useable for tobacco control leaders could be adapted by researchers working with community partners to assess and respond to stakeholders' preferences for receiving evidence in other areas of health policy.


Subject(s)
Community Participation , Tobacco , Communication , Humans , Tobacco Use
7.
Article in English | MEDLINE | ID: mdl-35457411

ABSTRACT

Community participation is a key element of active aging that promotes a new paradigm to enhance health and well-being as people age. However, social isolation is often a concern for older migrants. In this study, we aimed to investigate the current status of older migrants' community participation and assess the main influences on three forms of welfare, development, and organizational participation. We adopted a quantitative research design for this study. A questionnaire survey was completed by 1216 older migrants in 4 cities; 1105 valid responses were received, representing a response rate of around 91%. The research findings showed that the current participation of older migrants in community activities was limited. By comparison, full self-care capability and non-chronic illness positively affected general and welfare participation. Educated at primary school had a negative influence on general, development, and organizational participation, whereas knowledge of the local language was a significant predictor of general and development participation. Urban inclusion and resident friendship had positive effects on general, welfare, and development participation. The study also revealed direct influences of socioeconomic characteristics on different types of participation. Moving forward, actions are needed to maximize older migrants' participation in public events and community life.


Subject(s)
Transients and Migrants , China , Cities , Community Participation , Humans , Surveys and Questionnaires
8.
Proc Natl Acad Sci U S A ; 119(16): e2110156119, 2022 Apr 19.
Article in English | MEDLINE | ID: mdl-35412904

ABSTRACT

SignificanceConservation outreach has long depended on an intuitive sense of which species are more "charismatic" or engaging, for example, placing focus on certain charismatic megafauna in advertising materials. Online community science databases like eBird and iNaturalist provide records of how people engage with different birds under differing data collection protocols. Comparisons between the two databases reveal biases in bird reporting rates. Larger, more colorful, and rarer birds are preferentially engaged with opportunistically in iNaturalist records compared to more systematic eBird records. These relationships and the species-specific engagement indexes determined from these data can be applied to conservation and outreach efforts to help foster a public relationship with nature and can be used to improve models using these two databases.


Subject(s)
Birds , Community Participation , Community-Institutional Relations , Conservation of Natural Resources , Animals , Databases, Factual , Humans , Phenotype , Species Specificity
9.
PLoS One ; 17(3): e0260574, 2022.
Article in English | MEDLINE | ID: mdl-35302997

ABSTRACT

INTRODUCTION: The COVID-19 Community Research Partnership is a population-based longitudinal syndromic and sero-surveillance study. The study includes over 17,000 participants from six healthcare systems in North Carolina who submitted over 49,000 serology results. The purpose of this study is to use these serology data to estimate the cumulative proportion of the North Carolina population that has either been infected with SARS-CoV-2 or developed a measurable humoral response to vaccination. METHODS: Adult community residents were invited to participate in the study between April 2020 and February 2021. Demographic information was collected and daily symptom screen was completed using a secure, HIPAA-compliant, online portal. A portion of participants were mailed kits containing a lateral flow assay to be used in-home to test for presence of anti-SARS-CoV-2 IgM or IgG antibodies. The cumulative proportion of participants who tested positive at least once during the study was estimated. A standard Cox proportional hazards model was constructed to illustrate the probability of seroconversion over time up to December 20, 2020 (before vaccines available). A separate analysis was performed to describe the influence of vaccines through February 15, 2021. RESULTS: 17,688 participants contributed at least one serology result. 68.7% of the population were female, and 72.2% were between 18 and 59 years of age. The average number of serology results submitted per participant was 3.0 (±1.9). By December 20, 2020, the overall probability of seropositivity in the CCRP population was 32.6%. By February 15, 2021 the probability among healthcare workers and non-healthcare workers was 83% and 49%, respectively. An inflection upward in the probability of seropositivity was demonstrated around the end of December, suggesting an influence of vaccinations, especially for healthcare workers. Among healthcare workers, those in the oldest age category (60+ years) were 38% less likely to have seroconverted by February 15, 2021. CONCLUSIONS: Results of this study suggest more North Carolina residents may have been infected with SARS-CoV-2 than the number of documented cases as determined by positive RNA or antigen tests. The influence of vaccinations on seropositivity among North Carolina residents is also demonstrated. Additional research is needed to fully characterize the impact of seropositivity on immunity and the ultimate course of the pandemic.


Subject(s)
Antibodies, Viral/analysis , COVID-19/epidemiology , Health Personnel/statistics & numerical data , SARS-CoV-2/immunology , Adult , Age Factors , Community Participation , Female , Humans , Longitudinal Studies , Male , Middle Aged , North Carolina/epidemiology , Seroconversion , Young Adult
11.
Res Dev Disabil ; 124: 104213, 2022 May.
Article in English | MEDLINE | ID: mdl-35290949

ABSTRACT

BACKGROUND: With the increasing prevalence of autistic individuals, it is greatly needed to examine the factors impacting their community participation experiences. Where autistic adults live and how that may be related to their participation and quality of life is one environmental factor that has received little attention. AIMS: This study explored the association between living arrangements in the community and community participation for autistic adults. METHOD: This study used data from a statewide survey of autistic adults (N = 744) to investigate the relationship between living arrangements (live alone with or without support, live with roommate/spouse, or live with family) and the amount, breadth, and sufficiency of community participation. RESULTS: After controlling for sociodemographic and clinical factors known to be associated with community participation, autistic adults living with family members participated less frequently in community activities over 30 days than those living with a roommate/spouse. However, they experienced similar levels of sufficiency with their participation. Autistic adults living alone with support reported the lowest levels of sufficiency with their participation, although the amount and breadth of their participation were no different from other adults. CONCLUSION: These findings have several implications for providing support to enable autistic adults to participate in the areas that are important to them and to the extent they desire. Future research is needed to gain a better understanding of how interests and expectations for participation may be influenced by living situations.


Subject(s)
Autistic Disorder , Adult , Autistic Disorder/epidemiology , Community Participation , Humans , Quality of Life , Residence Characteristics
12.
Article in English | MEDLINE | ID: mdl-35329118

ABSTRACT

The COVID-19 pandemic and resultant lockdowns have brought unprecedented challenges for Maternal, Sexual and Reproductive Health (MSRH) services. Components of MSRH services adversely affected include antenatal, postnatal, and newborn care; provision of family planning and post-abortion care services; sexual and gender-based violence care and prevention; and care and treatment for sexually transmitted infections including HIV. Resuscitating, remodeling or inventing interventions to restore or maintain these essential services at the community level, as a gateway to higher care, is critical to mitigating short and long-term effects of the COVID-19 pandemic on essential MSRH. We propose a possible framework for community involvement and propose integrating key information, education, and communication of MSRH messages within COVID-19 messages.


Subject(s)
COVID-19 , HIV Infections , COVID-19/epidemiology , Communicable Disease Control , Community Participation , Female , HIV Infections/prevention & control , Humans , Infant, Newborn , Pandemics/prevention & control , Pregnancy , Reproductive Health
14.
Resuscitation ; 173: 144-146, 2022 Apr.
Article in English | MEDLINE | ID: mdl-35276313

ABSTRACT

The Emergency Medical Services constitutes a critical component in treating patients with out-of-hospital cardiac arrest (OHCA). Activating the EMS system is the first important step in deploying resources, but community involvement in the care of emergent patients is multifaceted and complex. How does the public access EMS services versus other modes of transport remains under investigated; and if the public opts for a different mode of transport to the hospital, how does this affect outcomes?


Subject(s)
Cardiopulmonary Resuscitation , Emergency Medical Services , Out-of-Hospital Cardiac Arrest , Community Participation , Hospitals , Humans , Out-of-Hospital Cardiac Arrest/therapy
15.
PLoS One ; 17(3): e0265404, 2022.
Article in English | MEDLINE | ID: mdl-35324975

ABSTRACT

BACKGROUND: Municipalities have been trying to involve citizens as citizen participation is thought to improve municipalities' accountability, the quality of services, and to align policies and services to communities' needs. This study examined citizens' participation preferences in policymaking by investigating their health policy priorities, expectations of involvement, and required support. METHODS: For this case-study the realist evaluation approach was applied to focus groups with citizens and to a workshop with a local panel consisting of professionals, citizens and citizen representatives. RESULTS: This study showed that citizens want to be involved in (health) policymaking with the aim of improving their communities' quality of life and living environment and prioritised local services and amenities (e.g. suitable housing, public transport, health and care services). Instead, professionals' priorities were focussed on singular public health issues related to prevention and lifestyle factors. The results also show that citizens felt responsible for driving citizen participation and representing community needs to the municipality, but needed the municipality to improve their communication and accessibility in order to do so successfully. Furthermore, the professionals on the panel indicated that they needed training on how to reach out to citizens. Such training should highlight how to better align their language to citizens' lived experiences. They also wanted their organisations to provide more space, flexibility and resources to build relationships with citizens in order to provide improved communication and accessibility to citizens. CONCLUSION: The difference in priorities between citizens and professionals highlights the importance of involving citizens in policymaking. Moreover, citizens' involvement can act as a lever for change to bring a wider range of services and policy sectors together and has the potential to better align policies to citizens' lived experiences and hopefully increase the democratic legitimacy of policymaking. However, to fulfil such potential municipalities will need to invest in improving their accessibility and communication with communities.


Subject(s)
Policy Making , Quality of Life , Community Participation , Focus Groups , Health Policy , Health Priorities , Humans
16.
Article in English | MEDLINE | ID: mdl-35328950

ABSTRACT

Participation in community affairs and activities is beneficial to the mental health of older adults. The current study attempted to confirm the mediating role of sense of community (SoC) between community participation (CP) and subjective well-being (SWB), and the moderating role of neuroticism between CP and SoC. A total of 465 older adults aged ≥65 years from China participated in both two-wave online surveys. The self-developed Community Participation questionnaire, the SoC scale, and the Neuroticism subscale were used to assess CP, SoC, and neuroticism, respectively. The four indicators of SWB were assessed by the Satisfaction with Life Scale, Positive Affect and Negative Affect Schedule, and the Center for Epidemiological Studies-Depression scale. The results revealed that CP was associated with three indicators of SWB including life satisfaction, positive affect, and depressive symptoms, SoC mediated the above associations, and neuroticism negatively moderated the association between CP and SoC, after controlling for age, sex, education, spouse status, monthly income, and physical health. CP enhances older adults' SWB through increasing their SoC. When compared to those older adults with a higher score of neuroticism, the enhancing effect of CP on SoC is stronger for those with lower scores of neuroticism.


Subject(s)
Community Participation , Mental Health , Aged , China , Humans , Neuroticism , Surveys and Questionnaires
17.
Article in English | MEDLINE | ID: mdl-35342107

ABSTRACT

BACKGROUND: In Latin America, community participation in health issues is subject to corrupt and self-serving interest. Research recommends strengthening communities' abilities to develop actions that involve them in the coproduction of their health. OBJECTIVES: This study aims (1) to understand social participation in health based on the discourse of community leaders and institutional representatives and (2) to design and implement an educational strategy for capacity building within two communities in Colombia. METHODS: The study used a community-based participatory research partnership between researchers, community leaders, and institutional representatives. To understand social participation in health, 17 interviews were conducted with leaders and institutional representatives. Based on this assessment, an educational strategy was designed and implemented with residents of two communities, which resulted in 28 people taking part in 14 pedagogical workshops. The strategy was evaluated through focus groups and the results of the project were validated by all the interested parties. RESULTS: Interviewees' perception of participation is reduced to access to health care services. They identified that the agencies and institutions promote participation only to comply with the law. The communities stated that they had few tools to resolve situations that violate their right to health. Therefore, leaders and researchers developed an educational strategy custom tailored, so the community could acquire the capacities to confront injustices and bureaucracy in the health system and public services. CONCLUSIONS: This participatory research empowered communities to defend their right to health. The findings are a reference for social participation in health initiatives in similar contexts.


Subject(s)
Capacity Building , Community-Based Participatory Research , Colombia , Community Participation , Humans , Social Participation
18.
Prog Community Health Partnersh ; 16(1): 105-117, 2022.
Article in English | MEDLINE | ID: mdl-35342115

ABSTRACT

BACKGROUND: Social determinants of health (SDoH) affect under-resourced communities. Such communities are seldom involved in defining and prioritizing local SDoH for policy action. OBJECTIVES: Apply community-partnered, participatory research (CPPR) to identify community stakeholder priorities for addressing SDoH in South Los Angeles. METHODS: Over 10 months, CPPR was applied to develop a multi-sector partnership and working group to plan and host a symposium for community stakeholders. 148 individuals and 16 organizations participated and engaged in focus and symposium-wide discussions. Themes were identified through collaborative inductive content analysis.Results and Lessons Learned: Participants identified ten specific SDoH, such as housing, with structural racism and discrimination as the underlying cause. CONCLUSIONS: Using CPPR to gain community members' insight about local factors that drive individual and community health is feasible and viewed by the community as socially responsible, suggesting it holds promise to address root causes of health inequality in under-resourced communities.


Subject(s)
Health Status Disparities , Social Determinants of Health , Community Participation , Community-Based Participatory Research/methods , Health Priorities , Humans
19.
J Gen Intern Med ; 37(Suppl 1): 91-93, 2022 Apr.
Article in English | MEDLINE | ID: mdl-35349023

ABSTRACT

There is growing understanding that the consumer's voice in research needs to be stronger. Translational research studies need consumer inclusion in order to be effectively implemented. This narrative article provides the perspective of a Veteran with spinal cord injury (SCI) who is an active member of several study teams and serves as a Consumer Advocate, providing the voice of the person with SCI. Factors that drive people to develop new research ideas are considered. Consumer involvement offers helpful insight into project outcomes that are valuable to the end-user. It is also recognized that data can be interpreted in several different ways depending on the observer. Including the consumer in a research project enables another interpretation, creating a more complete evaluation. Participating in health research is becoming a new standard for persons with many different illnesses and diseases. Greater things are accomplished by physicians, healthcare scientists, engineers, and healthcare consumers interacting together to increase both the quality of research projects and the quality of life for everyone involved, especially the person with the disorder. There will be more acceptance of ideas or projects when consumers are involved from the early steps and learn how the process works from beginning to end.


Subject(s)
Physicians , Quality of Life , Community Participation , Humans , Research Design
20.
BMC Med Ethics ; 23(1): 23, 2022 03 13.
Article in English | MEDLINE | ID: mdl-35282819

ABSTRACT

BACKGROUND: Citizen science and models for public participation in health research share normative ideals of participation, inclusion, and public and patient engagement. Academic researchers collaborate in research with members of the public involved in an issue, maximizing all involved assets, competencies, and knowledge. In citizen science new ethical issues arise, such as who decides, who participates, who is excluded, what it means to share power equally, or whose knowledge counts. This article aims to present an ethics framework that offers a lens of understanding and heuristic guidelines to deal with ethical issues in citizen science. METHODS: We conducted seven case studies between 2015 and 2021 to attune and validate the ethics framework for the context of citizen science. The cases related to studies with older adults, people with a psychiatric vulnerability, people dependent on community care, people who are unemployed or living in poverty or both, and young adults with respiratory disease. RESULTS: Ethics in citizen science reaches beyond the ethical issues in traditional biomedical and health research. It entails more than following procedures about informed consent and privacy and submitting a proposal to a Medical Research Ethics Committee. Ethics in citizen science relates to everyday ethical issues during the study, including relational and moral complexities concerning collaboration, sharing power, and democratic decision-making. Dealing with these issues requires ethics work of researchers. This entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethics work consists of seven features: framing work, role work, emotion work, identity work, reason work, relationship work, and performance work. All are relevant for researchers in citizen science. CONCLUSIONS: Ethical issues in citizen science often relate to power differentials, partnership, and collaboration between academics and non-academics. The ethics framework prepares researchers for the work needed in citizen science to act responsibly and offers a heuristic guide to reflect on ethics. Reflection on ethics is a pathway towards ethical citizen science, especially if researchers collaboratively reflect in partnership with non-academics who are subject to the moral issue.


Subject(s)
Citizen Science , Aged , Community Participation , Ethics Committees, Research , Humans , Patient Participation , Research Personnel , Young Adult
SELECTION OF CITATIONS
SEARCH DETAIL
...