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1.
PLoS Negl Trop Dis ; 18(7): e0012270, 2024 Jul.
Article in English | MEDLINE | ID: mdl-39012847

ABSTRACT

BACKGROUND: Globally, there are an estimated 20.9 million cases of onchocerciasis, with Africa bearing the greatest burden. The World Health Organization (WHO) has targeted the disease for elimination by 2030. As of August 2023, there were 15 foci in 37/48 (76%) districts and one city in Uganda that had reached the elimination phase. However, there is a paucity of data on community involvement in post-elimination surveillance (PES) activities. The communities in the post-elimination phase are expected to maintain surveillance, provide health education, refer cases for treatment, and participate in surveillance. However, it is not clear whether this is being done. In this study, we assessed the feasibility of community involvement in post-elimination surveillance activities in Bududa District, Eastern Uganda, to draw key generalisable lessons for similar settings. METHODS: This was a cross-sectional study employing rigorous mixed methods of data collection. We used a semi-structured questionnaire to collect quantitative data on randomly sampled study participants in two sub-countries in the district. Community involvement in post-elimination surveillance (PES) was our dependent variable, measured using Yes or No questions, and our independent variables were measured on different scales. Computations of proportions and associations were done using Stata 15 software. Conversely, qualitative data were collected via focus group discussions (FGDs) for community participants and key informant interviews (KIIs) for local leaders. For the qualitative component, we had 2 FGDs, each consisting of 8 gender-balanced participants per group and 8 KIIs. Qualitative data analyses were done using a robust thematic framework approach, ensuring the reliability and validity of our findings. RESULTS: A total of 422 participants with a mean age of 51.4 years (SD = 15.8) participated in the study. Community involvement in post-elimination surveillance was low (14%). Factors associated with involvements were district support [Adjusted odd ratio AOR 14, 95 CI = (2.5, 81.7)], seeing black flies in the environment in a week preceding the survey [AOR 8, 95% CI = (1.5, 42.5)], in one month [AOR 3.8, 95% CI = (1.1, 13.2)], and being a community volunteer in the Ivermectin treatment program [AOR 4.3, 95% CI = (1.03, 17.9)]. Lack of funding, poor motivation, poor program sustainability planning, and a lack of drugs at health facilities were key challenges affecting community involvement in post-elimination surveillance. CONCLUSION: Community involvement in onchocerciasis post-elimination surveillance activities in Bududa District in Eastern Uganda was low but could be improved by increased district support, funding, community motivation and sensitisation.


Subject(s)
Community Participation , Disease Eradication , Onchocerciasis , Uganda/epidemiology , Humans , Cross-Sectional Studies , Onchocerciasis/epidemiology , Onchocerciasis/prevention & control , Female , Male , Adult , Middle Aged , Surveys and Questionnaires , Young Adult , Adolescent , Aged
2.
Eur J Psychotraumatol ; 15(1): 2375139, 2024.
Article in English | MEDLINE | ID: mdl-38995199

ABSTRACT

Background: Losing a family member during childhood is a potentially traumatic event and increases the risk of mental health difficulties. Adolescents have the right to express their views in research of relevance to them, but few studies have involved bereaved adolescents as collaborators (i.e. Patient and Public Involvement (PPI)). Furthermore, to ensure meaningful and non-tokenistic involvement, bereaved adolescents' levels of participation and experiences of taking part in research need to be evaluated.Objectives: The aim was to describe and evaluate a PPI process working with bereaved adolescents to develop a self-management mobile app for adolescents in grief.Methods: The PPI process consisted of four workshops during which the app's logo, colours, name, content, and layout were discussed with six parentally bereaved adolescents aged 13-18 years. The adolescents were recruited through a non-profit organisation providing support for adolescents in grief. The PPI process was documented and evaluated using participant observations and an online survey completed by the adolescents, covering the themes of social context, participation, and influence.Results: The adolescents perceived the social context as comfortable and inclusive, where their knowledge was valued. Their participation was characterised by ownership and motivated by a desire to help others with similar experiences. The adolescents' ability to participate in PPI activities was assisted by the researchers' flexibility, although challenging assignments may have made participation harder. Throughout PPI activities, adolescents contributed with relevant input and reported feeling influential. The study reached the intended levels of participation and appeared to adequately fulfil the adolescents' right to participation.Conclusions: Engaging adolescents who have undergone a potentially traumatic event, such as the loss of a family member, in research can enhance the overall relevance of the study. Moreover, it can entail a meaningful and positive experience for the participating adolescents, while also fulfilling their fundamental right to participation.


A collaborative process with parentally bereaved adolescents to develop a psychosocial self-management mobile app for adolescents in grief was described and evaluated.Adolescents made significant contributions, took ownership, and experienced having influence over the decisions made, which increased the relevance of the intervention.The collaborative process reached the intended level of participation and created a positive and meaningful experience for the adolescents.


Subject(s)
Bereavement , Mobile Applications , Self-Management , Humans , Adolescent , Female , Male , Surveys and Questionnaires , Patient Participation , Community Participation/psychology
3.
Health Promot Int ; 39(4)2024 Aug 01.
Article in English | MEDLINE | ID: mdl-38980688

ABSTRACT

The COVID-19 pandemic exacerbated pre-existing social, economic and political inequalities. The evidence describes the use of community engagement approaches to support appropriate COVID-19 prevention and control measures. We aimed to delve deeper into the community response to COVID-19 in Barcelona neighbourhoods with different pre-existing levels of development of community health action (CHA). A qualitative phenomenological study was conducted in six Barcelona neighbourhoods with different types of CHAs. The sample included 37 in-depth interviews with community agents with good knowledge of the territory. The content analysis focused on three dimensions: symbolic (conceptions motivating action), substantive (the content and resources of the action) and operational (interactions between agents). Regardless of their CHA typology, all neighbourhoods responded to the needs generated by the pandemic. Symbolic: strong-CHA development, characterized by well-established participatory structures, facilitated responses to the crisis. In medium-CHA neighbourhoods, the emergency exacerbated previous tensions. In emerging-CHA neighbourhoods, previous participatory structures, although not health-specific, favoured the coordination of responses. Substantive: technology influenced the way CHA activities were conducted. Operative: in the strong-CHA neighbourhood, new participants were able to join previous participatory structures. In medium-CHA neighbourhoods, power dynamics hindered coordination. In conclusion, strong CHA can play a key role in addressing the adverse consequences of social and health crisis. Empowering citizens and communities should be a primary objective of public policy that integrates the 'health-in-all-policies' approach. This approach entails allocating public resources to strengthen the role of community action and power.


Subject(s)
COVID-19 , Qualitative Research , Residence Characteristics , Humans , COVID-19/epidemiology , Spain/epidemiology , Community Participation/methods , SARS-CoV-2 , Pandemics , Public Health , Interviews as Topic , Female , Male
5.
Prog Community Health Partnersh ; 18(2): 155-166, 2024.
Article in English | MEDLINE | ID: mdl-38946562

ABSTRACT

BACKGROUND: The Flint water crisis (FWC) was a public health tragedy caused by crumbling infrastructure, subverted democracy, and indifference toward a predominantly poor and Black community that resulted in lead-in-water exposure, Legionnaires' disease, and emotional and health-related trauma. Through the cooperation of community partners, the Flint Registry (FR) was conceived to track long-term health and improve public health via service connections. OBJECTIVES: This study sought to share the FR's community-partnered, multi-tiered engagement strategy and determine the efficacy of this strategy to engage the community and reach Flint residents. METHODS: Community engagement and impact were measured by collecting and describing feedback from the community engagement strategies and by comparing the demographics of the enrollees recruited through community-engaged recruitment (CER) and non-CER methods. Enroll-ees indicated how they heard about the FR; CER involved direct interaction with a community member. RESULTS: Community engagement strategies incorporated approximately 1,200 people and 7 funded organizations, impacting 22 key areas of FR design and implementation. More than 50% of enrollees heard about the FR through CER methods. They were, on average, more likely to be younger, female, Black/African American, and living outside of Flint during the FWC. CONCLUSIONS: Community engagement elevated voices of those impacted by the FWC. CER methods were as effective as non-CER methods. Although there were no differences in screened measures of social vulnerability, there were in age, gender, and race. CER methods may increase participation and build trust in populations which historically are hesitant to participate in public health efforts.


Subject(s)
Community-Based Participatory Research , Registries , Humans , Female , Male , Adult , Middle Aged , Florida , Community Participation/methods , Adolescent , Young Adult , Aged , Community-Institutional Relations
6.
J Int AIDS Soc ; 27 Suppl 2: e26281, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38988036

ABSTRACT

INTRODUCTION: A Programme Science approach that prioritizes populations who will benefit most and ensuring resources are allocated to programmes that meet the needs of those populations will bring an equity focus to research. Gay men and other men who have sex with men, people who use drugs, sex workers of all genders, and trans and gender-diverse people, defined by the Joint United Nations Programme on HIV/AIDS (UNAIDS) and The Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund) as key populations, have been disproportionately impacted since the start of the HIV pandemic. Through documenting community experiences from global key population-led networks, the authors explore the potential value and impact of community-led organizations and service delivery as critical components in effective HIV and Sexually Transmitted infections (STI) programmes. DISCUSSION: Through advocacy and research interventions, global key population networks have identified barriers against scaling up interventions for criminalized and marginalized communities, as well as highlighted solutions. The authors examine some of the current barriers to meaningful involvement of communities and the scaling up of community-led programmes that need to be addressed if Programme Science is to maintain an equity lens and the needs of key populations are to be met and highlight the need to make visible community engagement and participation in embedded research and Programme Science. CONCLUSIONS: The Programme Science approach provides an important opportunity to understand practical issues that will increase effective coverage in the implementation of public health and other interventions, which will require the prioritizing of key populations and their priorities in HIV and STI programmes. It will require extensive time and work to build relationships, increase capacity and share power. Where this has already happened, it has resulted in positive outcomes, including better health outcomes, reduced stigma, increased agency for key populations, and built community-led organizations and responses.


Subject(s)
HIV Infections , Humans , HIV Infections/prevention & control , Male , Leadership , Community Participation , Global Health , Social Responsibility , Sexually Transmitted Diseases/prevention & control , Female
7.
J Int AIDS Soc ; 27 Suppl 2: e26277, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38988038

ABSTRACT

INTRODUCTION: Programme Science (PS) and community-led monitoring (CLM) intersect in unexpected and promising ways. This commentary examines a CLM initiative in Malawi and South Africa to highlight the crucial role of CLM in bolstering the PS framework. By leveraging data sources often overlooked by conventional research and evaluation approaches, CLM emerges as a pivotal element in enhancing programme effectiveness. This paper delineates the fundamental principles of CLM, presents programme outcomes derived from CLM methodologies and contextualizes these findings within the broader framework of PS. DISCUSSION: The Citizen Science Project implements CLM continuously at 33 health facilities: 14 in Malawi (eight in Kasungu District and six in Dedza District), and 19 in South Africa (all in the West Rand District), representing a total catchment area of 989,848 people. Monitoring indicators are developed in an iterative process with community groups. The indicators are unique to each country, but both focus on the uptake of health services (quantitative) and barriers to access (qualitative). Monthly clinic records surveys capture 34 indicators in Malawi and 20 in South Africa and are supplemented by qualitative interviews with care recipients and healthcare workers. Qualitative interviews provide additional granularity and help confirm and explain the more macro trends in service coverage as described in quantitative data. The resulting data analysis reveals key themes that help stakeholders and decision-makers to solve problems collaboratively. Noteworthy outcomes include a substantial increase in multi-month dispensing of antiretroviral therapy (ART) during COVID-19 (from 6% to 31%) with a subsequent recovery surpassing of HIV service benchmarks in Malawi post-pandemic. CONCLUSIONS: While quantifying direct impact remains challenging due to the project's design, CLM proves to be a robust methodology that generates credible data and produces impactful outcomes. Its potential extends beyond the health sector, empowering community leadership and fostering interventions aligned with community needs. As CLM continues to evolve, its integration into PS promises to improve relevance, quality and impact across diverse disciplines.


Subject(s)
Citizen Science , HIV Infections , Malawi , South Africa , Humans , HIV Infections/drug therapy , Citizen Science/methods , Program Evaluation , COVID-19/epidemiology , Community Participation , Female , Male
9.
Health Expect ; 27(4): e14138, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38982761

ABSTRACT

INTRODUCTION: Co-design in health research involves patient and public involvement and engagement (PPIE) in intervention or service design. Traditionally, co-design is undertaken in-person; however, exploring online delivery is warranted. PPIE in co-design must be considered carefully, and assumptions that in-person approaches will transition automatically to an online environment should be avoided. Currently, there are a lack of evidence-informed approaches to facilitating co-design online. This study aimed to develop and evaluate a framework for authentically adapting health research co-design into an online environment. MATERIALS AND METHODS: The initial framework was developed through a literature review, synthesis of in-person co-design principles, and alignment of online strategies. The framework was then applied to a co-design project with 10 participants across relevant PPIE groups (end-users [n = 4], clinicians [n = 2], coaches [n = 2] and clinician-researchers [n = 2]). Participants' experiences of the online co-design process were evaluated via a mixed-methods design using surveys and semi-structured interviews. Evaluation data were analysed using descriptive statistics and reflexive thematic analysis to inform a revised framework. RESULTS: The developed framework, Partnership-focussed Principles-driven Online co-Design (P-POD) was used to design eight 90 min online co-design workshops. Evaluation data involved 46 survey responses, and eight participants were interviewed on project completion. Survey data indicated that the process was satisfying, engaging and adhered to the P-POD framework. Themes derived from interview data describe a respectful and collaborative online culture, valuing of diverse perspectives and space for healthy debate, how power was perceived as being shared but not equal and multiple definitions of success within and beyond the process. A final, refined P-POD framework is presented. CONCLUSION: With evaluation of the initial P-POD framework showing evidence of adherence to co-design principles, positive participant experiences and goal achievement for both the project and the participants, the refined P-POD framework may be used and evaluated within future intervention or service design. PATIENT OR PUBLIC CONTRIBUTION: This study involved the participants (end-users, clinicians and service providers) in the co-design process described, interpretation of the results through member-checking interview responses, assisting in development of the final framework and as co-authors for this manuscript.


Subject(s)
Internet , Patient Participation , Humans , Patient Participation/methods , Community Participation/methods , Surveys and Questionnaires , Interviews as Topic , Research Design , Health Services Research
10.
Health Expect ; 27(4): e14130, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38962988

ABSTRACT

INTRODUCTION: There is currently limited guidance for researchers on Patient and Public Involvement (PPI) for preclinical spinal cord research, leading to uncertainty about design and implementation. This study aimed to develop evidence-informed principles to support preclinical spinal cord researchers to incorporate PPI into their research. METHODS: This study used a modified Delphi method with the aim of establishing consensus on a set of principles for PPI in spinal cord research. Thirty-eight stakeholders including researchers, clinicians and people living with spinal cord injury took part in the expert panel. Participants were asked to rate their agreement with a series of statements relating to PPI in preclinical spinal cord research over two rounds. As part of Round 2, they were also asked to rate statements as essential or desirable. RESULTS: Thirty-eight statements were included in Round 1, after which five statements were amended and two additional statements were added. After Round 2, consensus (> 75% agreement) was reached for a total of 27 principles, with 13 rated as essential and 14 rated as desirable. The principles with highest agreement related to diversity in representation among PPI contributors, clarity of the purpose of PPI and effective communication. CONCLUSION: This research developed a previously unavailable set of evidence-informed principles to inform PPI in preclinical spinal cord research. These principles provide guidance for researchers seeking to conduct PPI in preclinical spinal cord research and may also inform PPI in other preclinical disciplines. PATIENT AND PUBLIC INVOLVEMENT STATEMENT: This study was conducted as part of a project aiming to develop PPI in preclinical spinal cord injury research associated with an ongoing research collaboration funded by the Irish Rugby Football Union Charitable Trust (IRFU CT) and the Science Foundation Ireland Centre for Advanced Materials and BioEngineering Research (SFI AMBER), with research conducted by the Tissue Engineering Research Group (TERG) at the RCSI University of Medicine and Health Sciences. The project aims to develop an advanced biomaterials platform for spinal cord repair and includes a PPI Advisory Panel comprising researchers, clinicians and seriously injured rugby players to oversee the work of the project. PPI is included in this study through the involvement of members of the PPI Advisory Panel in the conceptualisation of this research, review of findings, identification of key points for discussion and preparation of the study manuscript as co-authors.


Subject(s)
Delphi Technique , Patient Participation , Spinal Cord Injuries , Humans , Spinal Cord Injuries/therapy , Community Participation/methods , Male , Consensus , Female , Biomedical Research , Stakeholder Participation
11.
Prog Community Health Partnersh ; 18(2): 235-245, 2024.
Article in English | MEDLINE | ID: mdl-38946568

ABSTRACT

BACKGROUND: Recent data indicate rising opioid overdose deaths among African American residents of Washington, DC. OBJECTIVES: We highlight a community-informed approach to assessing attitudes toward opioid use disorder treatment among DC residents (February 2019 to March 2020). METHODS: A listening tour with trusted community leaders led to the formation of a Community Advisory Board (CAB). When the COVID-19 pandemic commenced in March 2020, community dialogues became exclusively virtual. The CAB partnered with academic leaders to co-create project mission and values and center the community's concerns related to opioid use and its causes, treatment structure, and facilitators of effective engagement. RESULTS: Interview guides were created for the engagement of community members, using values highlighted by the CAB. The CAB underscored that in addition to opioid problems, effective engagement must address community experience, collective strengths/resilience, and the role of indigenous leadership. CONCLUSIONS: Engaging community prior to project implementation and maintaining alignment with community values facilitated opioid use disorder assessments. Community-informed assessments may be critical to building community trust.


Subject(s)
Black or African American , COVID-19 , Community-Based Participatory Research , Opioid-Related Disorders , Humans , Black or African American/psychology , District of Columbia/epidemiology , COVID-19/epidemiology , Female , Male , SARS-CoV-2 , Community Participation/methods , Adult
12.
Prog Community Health Partnersh ; 18(2): 277-285, 2024.
Article in English | MEDLINE | ID: mdl-38946572

ABSTRACT

BACKGROUND: There are few methods that focus on engaging racial and ethnic minorities in research. The Meharry-Vanderbilt Community Engaged Research Core partnered with the University of Utah, the University of Michigan, and community/patient partners to convene a virtual summit to share the Community Engagement Studio (CE Studio) model, a structured and widely-used approach that facilitates community engagement in research. OBJECTIVES: The CE Studio Virtual Training Summit (Summit) goal was to prepare multi-stakeholder (e.g., researchers, community members) research teams to engage more racial/ethnic minorities in CE studios. METHODS: Summit planning included (1) agenda development, including CE Studio training and a live CE Studio demonstration; (2) summit advertisement across several networks, including minority-serving institutions; and (3) development of pre-and post-Summit evaluations. RESULTS: Among 50 registrants (76.7% academicians) that completed evaluations, more than 65% planned to increase engagement of racial/ethnic minorities in research and implement CE Studios as a result of the Summit. Increased confidence in all CE training areas was reported, including in conducting an effective CE Studio planning meeting (32.1% pre-Summit/90.3% post-Summit) and identifying and preparing patient/community stakeholders for engagement as CE Studio experts (46.4% pre-Summit/93.6% post-Summit). CONCLUSIONS: Virtual CE Studio training that includes multi-stakeholder planning partners can be an effective method for introducing the CE Studio model and preparing multi-stakeholder research teams to engage racial and ethnic minorities in CE Studios. This is particularly salient given that effective community engaged research methods and best practices are not currently being distributed through research programs at a pace consistent with the demands.


Subject(s)
Community-Based Participatory Research , Humans , Community-Based Participatory Research/organization & administration , Ethnic and Racial Minorities , Stakeholder Participation , Community Participation/methods
13.
Antimicrob Resist Infect Control ; 13(1): 71, 2024 Jul 04.
Article in English | MEDLINE | ID: mdl-38965593

ABSTRACT

The use of antimicrobials in Thailand has been reported as one of the highest in the world in human and animal sectors. Our engagement project aimed to improve our understanding of the issue of antimicrobial use and antimicrobial resistance (AMR) among adult Thai communities, and co-create locally relevant solutions to AMR, especially those focusing on raising awareness to improve related policies in Thailand.We conducted a series of online and in-person 'conversations' according to Wellcome's 'Responsive Dialogues' engagement approach, designed to bring together different voices to understand complex AMR problems and find potential solutions. This approach enabled key AMR stakeholders and policy makers to hear directly from communities and members of the public, and vice versa. Conversations events took place between 25 November 2020 and 8 July 2022, and we engaged 179 AMR key stakeholders and members of the public across Thailand.The issues found were: there were quite a lot of misunderstandings around antimicrobials and AMR; participants felt that communications and engagement around antimicrobial resistance had limited reach and impact; asking for and taking antibiotics for self-limiting ailments is a social norm in Thailand; and there appeared to be a wide availability of cheap antimicrobials. To mitigate the spread of AMR, participants suggested that the messages around AMR should be tailored to the target audience, there should be more initiatives to increase general health literacy, there should be increased availability of AMR related information at the local level and there should be increased local leadership of AMR mitigation efforts.Trial registration Thaiclinicaltrials.org registration: TCTR20210528003 (28/05/2021).


Subject(s)
Anti-Bacterial Agents , Drug Resistance, Bacterial , Thailand , Humans , Anti-Bacterial Agents/therapeutic use , Community Participation , Health Knowledge, Attitudes, Practice , Antimicrobial Stewardship
14.
J Int AIDS Soc ; 27 Suppl 1: e26278, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38965981

ABSTRACT

INTRODUCTION: Successful implementation of evidence-based practices depends on contextual factors like stakeholder engagement, the socio-political environment, resource availability, and stakeholders' felt needs and preferences. Nevertheless, inequities in implementation exist and undermine efforts to address HIV in marginalized key populations. Implementation science shows promise in addressing such inequities in the HIV response, but can be limited without meaningful engagement from citizens or communities. DISCUSSION: We define the concept of a citizen-engaged HIV implementation science as one that involves citizens and communities deeply in HIV implementation science activities. In this commentary, we discuss how citizen science approaches can be leveraged to spur equity in HIV implementation science. Drawing on three areas previously defined by Geng and colleagues that serve to drive impactful implementation science in the HIV response, we discuss how citizens can be engaged when considering "whose perspectives?", "what questions are being asked?" and "how are questions asked?". With respect to "whose perspectives?" a citizen-engaged HIV implementation science would leverage participatory methods and tools, such as co-creation, co-production and crowdsourcing approaches, to engage the public in identifying challenges, solve health problems and implement solutions. In terms of "what questions are being asked?", we discuss how efforts are being made to synthesize citizen or community-led approaches with existing implementation science frameworks and approaches. This also means that we ensure communities have a say in interrogating and deconstructing such frameworks and adapting them to local contexts through participatory approaches. Finally, when considering "how are questions asked?", we argue for the development and adoption of broad, guiding principles and frameworks that account for dynamic contexts to promote citizen-engaged research in HIV implementation science. This also means avoiding narrow definitions that limit the creativity, innovation and ground-up wisdom of local citizens. CONCLUSIONS: By involving communities and citizens in the development and growth of HIV implementation science, we can ensure that our implementation approaches remain equitable and committed to bridging divides and ending AIDS as a public health threat. Ultimately, efforts should be made to foster a citizen- and community-engaged HIV implementation science to spur equity in our global HIV response.


Subject(s)
HIV Infections , Implementation Science , Humans , HIV Infections/prevention & control , Citizen Science/methods , Community Participation/methods
15.
Health Expect ; 27(4): e14149, 2024 Aug.
Article in English | MEDLINE | ID: mdl-39016094

ABSTRACT

BACKGROUND: Working together and co-production with public advisors have become popular among health researchers. This practice extends to doctoral researchers who involve public advisors at different stages of their research or throughout their doctoral journey. OBJECTIVE: A doctoral researcher and two public advisors jointly evaluated public involvement in doctoral research. METHODS: Using the established public involvement evaluation framework by Gibson and colleagues, public advisors and a doctoral researcher mapped and evaluated their experiences of public involvement in doctoral research. The four-dimensional framework allowed the authors to reflect on (1) the strength of the public voice, (2) the number of ways in which public advisors had an opportunity to get involved, (3) whether the discussion was about the public or organisation's (doctoral researcher, university or funder) concerns and (4) if the organisation changed or resisted feedback. Results are presented in a diagrammatic and narrative way. RESULTS: Public advisors saw themselves as having a stronger voice in doctoral research than the doctoral researcher perceived. All agreed that there existed multiple ways for public advisors to be involved. Public advisors' feedback was taken on board, but it was also limited due to restrictions of what the doctoral programme allowed. CONCLUSION: Public advisors ensured that the doctoral research was more relevant to the public. The ongoing involvement also shaped the doctoral researcher's thinking and views. PATIENT AND PUBLIC INVOLVEMENT: Two public advisors were involved throughout the 3 years of this doctoral research. They co-evaluated this involvement and are co-authors of this paper.


Subject(s)
Community Participation , Research Personnel , Humans , Community Participation/methods , Education, Graduate
16.
Health Expect ; 27(4): e14147, 2024 Aug.
Article in English | MEDLINE | ID: mdl-39021309

ABSTRACT

INTRODUCTION: It is now widely recognised that engaging consumers in research activities can enhance the quality, equity and relevance of the research. Much of the commentary about consumer engagement in research focuses on research processes and implementation, rather than dissemination in conference settings. This article offers reflections and learnings from consumers, researchers and conference organisers on the 12th Health Services Research Conference, a biennial conference hosted by the Health Services Research Association of Australia and New Zealand (HSRAANZ). METHOD: We were awarded funds via a competitive application process by Bellberry Limited, a national not-for-profit agency with a focus on improving research quality, to incorporate consumer engagement strategies in conference processes and evaluate their impact. FINDINGS: Strategies included consumer scholarships, a buddy system, designated quiet space and consumer session co-chairs; the reflections explored in this paper were collected in the funded, independent evaluation. Our insights suggest a need for more structured consumer involvement in conference planning and design, as well as the development of specific engagement strategies. CONCLUSION: To move toward active partnership in scientific conference settings, our experience reinforces the need to engage consumers as members in designing and conducting research and in presenting research and planning conference content and processes. PUBLIC CONTRIBUTION: Consumer engagement in research dissemination at conferences is the focus of this viewpoint article. Consumers were involved in the conception of this article and have contributed to authorship at all stages of revisions and edits.


Subject(s)
Community Participation , Congresses as Topic , Humans , Community Participation/methods , Australia , Health Services Research , New Zealand
17.
Front Public Health ; 12: 1401777, 2024.
Article in English | MEDLINE | ID: mdl-39026588

ABSTRACT

Context: This study explores the influence of COVID-19 public health mandates on people with mobility disabilities in the United States in their everyday lives. It highlights the intersection of disability with social determinants of health, emphasizing the need for a comprehensive policy response. Methods: Qualitative data were collected through 76 semi-structured interviews with people with mobility disabilities. Interviews focused on experiences with COVID-19 mandates and community access, analyzed using thematic analysis and coded for emergent subthemes. Results: The relationship between community participation and COVID-19 compliance was complex for people with disabilities. Inaccessible environments and inflexible policies made it difficult for people with disabilities to practice good safety measures, while widespread noncompliance by community members limited their community participation. The findings revealed additional mixed lived experiences of COVID-19 policies on community participation, accessibility, and access to resources and support. While technology facilitated some aspects of community participation, issues with accessibility, public transportation, and personal assistance services were exacerbated. Conclusion: COVID-19 policies have complex implications for people with mobility disabilities. Findings suggest a need for inclusive policymaking, improved disability awareness, and continued support for accessible technology and services. Future research should further explore these dynamics to inform policy and practice.


Subject(s)
COVID-19 , Disabled Persons , Qualitative Research , Humans , COVID-19/epidemiology , Female , Male , United States , Middle Aged , Adult , Health Services Accessibility , Community Participation , Aged , SARS-CoV-2 , Mobility Limitation , Interviews as Topic , Health Policy , Social Determinants of Health
18.
Pan Afr Med J ; 47: 124, 2024.
Article in English | MEDLINE | ID: mdl-38854860

ABSTRACT

Introduction: health sector planning and budgeting are concerned with identifying priorities that guide budgetary allocation to improve health outcomes. Engaging the community in this process empowers them to manage their own health. Despite the benefits and the availability of legislation and structures to mainstream community participation, their involvement is minimal and marred with challenges. This study, therefore, aimed to examine the level and perspectives of health managers on community health committees´ (CHC) participation in health sector planning and budgeting. Methods: the study utilized a cross-sectional research design, incorporating both quantitative and qualitative research methods. Study participants were involved in planning and budgeting. Quantitative data were collected from 100% (n=170) of health managers, while qualitative data were gathered from 100% (n=3) of county department of health executives and 94% (n=83) of community health committee members. Descriptive statistics were utilized to analyze quantitative data, while qualitative data were analyzed thematically. Results: although 87% of the health managers agreed that community health committee participation is beneficial, only 11% of them were satisfied with their participation, and 54% rated CHC participation as low; furthermore, over 50% of health managers disagreed that Community Health Unit (CHUs) have the necessary skills to effectively participate in the process, that adequate budget and time are allocated for CHC participation, and that feedback about the process is provided to them. Conclusion: the county health department of health should allocate more funds and design sustained capacity-building programs to enhance CHC participation in health sector planning and budgeting.


Subject(s)
Budgets , Community Participation , Cross-Sectional Studies , Humans , Kenya , Male , Health Planning , Female , Adult , Middle Aged
19.
Malar J ; 23(1): 192, 2024 Jun 19.
Article in English | MEDLINE | ID: mdl-38898518

ABSTRACT

Elimination of malaria has become a United Nations member states target: Target 3.3 of the sustainable development goal no. 3 (SDG3). Despite the measures taken, the attainment of this goal is jeopardized by an alarming trend of increasing malaria case incidence. Globally, there were an estimated 241 million malaria cases in 2020 in 85 malaria-endemic countries, increasing from 227 million in 2019. Malaria case incidence was 59, which means effectively no changes in the numbers occurred, compared with the baseline 2015. Jennifer Doudna-co-inventor of CRISPR/Cas9 technology-claims that CRISPR holds the potential to lessen or even eradicate problems lying in the centre of SDGs. On the same note, CRISPR/Cas9-mediated mosquito-targeting gene drives (MGD) are perceived as a potential means to turn this trend back and put momentum into the malaria elimination effort. This paper assessed two of the critical elements of the World Health Organization Genetically modified mosquitoes (WHO GMM) Critical Pathway framework: the community and stakeholders' engagement (inability to employ widely used frameworks, segmentation of the public, 'bystander' status, and guidelines operationalization) and the regulatory landscape (lex generali, 'goldilocks dilemma', and mode of regulation) concerning mosquito-oriented gene drives (MGD) advances. Based on the assessment findings, the author believes that CRISPR/Cas-9-mediated MGD will not contribute to the attainment of SDG3 (Target 3.3), despite the undisputable technology's potential. This research pertains to the state of knowledge, legal frameworks, and legislature, as of November 2022.


Subject(s)
CRISPR-Cas Systems , Malaria , Malaria/prevention & control , Animals , Disease Eradication , Humans , Sustainable Development , Community Participation , Mosquito Vectors/genetics , Gene Drive Technology/methods , Mosquito Control , Gene Editing
20.
BMC Public Health ; 24(1): 1651, 2024 Jun 20.
Article in English | MEDLINE | ID: mdl-38902692

ABSTRACT

BACKGROUND: Aedes mosquitoes are the main vector of dengue infection, a global health threat affecting millions of people annually. Conventional prevention and control methods against dengue outbreaks have only achieved marginal success. Recognizing the complex issue at hand, a multilevel participatory approach is crucial. Thus, alternative strategies that involve community engagement are increasingly being considered and attempted. While community-based vector control programs have been conducted, sustaining behavioral changes among the population remains a challenge. This study aimed to identify the specific community needs in combating Aedes mosquitoes and dengue fever as a basis to guide the development of community-driven initiatives and foster a deeper sense of ownership in the fight against dengue. METHODS: Between 1 August 2022 and 30 November 2022, we conducted a study in Hulu Langat district, Selangor, using a mixed-method design. All participants consented to the study, which comprised 27 participants (FGDs) and 15 participants (IDIs). The IDIs included two participants with a history of dengue fever, one community leader, one faith leader, seven local authorities, and four district health officers. Semi-structured interviews and discussions were performed among stakeholders and community members recruited via purposive and snowball sampling techniques. All interviews were audio-recorded before being analyzed using reflexive thematic analysis. RESULTS: These results derived from qualitative data explored the perspectives and needs of communities in combating Aedes mosquitoes and dengue fever. Interviews were conducted with various stakeholders, including community members, leaders, and health officers. The study identified the necessity of decisive actions by authorities to address the impact of the dengue epidemic, the importance of community engagement through partnerships and participatory approaches, the potential benefits of incentives and rewards to enhance community participation, and the need for sustained community engagement and education, especially via the involvement of young people in prevention efforts. These findings provide valuable insights into the design of effective strategies against Aedes mosquitoes and dengue fever. CONCLUSIONS: In short, there is an urgent need for a comprehensive approach involving multiple stakeholders in the fight against Aedes mosquitoes and dengue fever. The approach should incorporate efforts to raise awareness, provide practical resources, and foster community responsibility. The active involvement of teenagers as volunteers can contribute to long-term prevention efforts. Collaboration, resource allocation, and community engagement are crucial for effective dengue control and a healthier environment.


Subject(s)
Aedes , Dengue , Mosquito Control , Humans , Aedes/virology , Dengue/prevention & control , Dengue/epidemiology , Animals , Female , Male , Adult , Mosquito Control/methods , Community Participation , Urban Population , Middle Aged , Mosquito Vectors , Indonesia/epidemiology , Qualitative Research , Needs Assessment , Health Knowledge, Attitudes, Practice , Young Adult
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