Learn the key steps and tips to design a participatory research project that involves and empowers people with HIV/AIDS in the research process and outcomes.

Speaking to the Right People: Engage with people living with HIV/AIDS, healthcare professionals, policymakers, and related organizations. Asking Necessary Questions: Inquire about their daily difficulties, requirements, and where they believe researchers should concentrate their efforts. Developing a Specific Question: Based on these talks, develop a concise and specific research topic that addresses the acknowledged needs and requirements of the HIV/AIDS community.

Identifying the Right People: Reach out to individuals in HIV/AIDS support groups or clinics, looking for those interested in joining our research. Sharing Information: Explain everything about the research and provide consent forms, making sure they understand what's involved and any possible risks they have. Preparing Everyone: Explain to the participants about data collection, and analysis to make sure they feel confident and ready. Staying Connected: Throughout the project, stay in touch, offer help and listen to their ideas or concerns to make sure they feel supported and valued in the process.

What is the best way to design a participatory research project for people with HIV/AIDS?

Participatory research is a collaborative approach that involves the active engagement of people with HIV/AIDS in the design, implementation, and evaluation of a research project. It aims to empower them, address their needs and preferences, and enhance the relevance and quality of the research outcomes. But how can you design a participatory research project for people with HIV/AIDS effectively? Here are some key steps and tips to consider.

1 Identify the research question

The first step is to identify the research question that is meaningful and relevant for people with HIV/AIDS and the broader community. You can do this by conducting a needs assessment, reviewing the literature, and consulting with stakeholders, such as people with HIV/AIDS, health care providers, policy makers, and advocacy groups. The research question should be clear, specific, and feasible, and reflect the priorities and interests of people with HIV/AIDS.

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Preetiparna Parida

PhD Scholar | Cancer Genetics Researcher | Molecular Virologist | Cervical Cancer and HPV Integration researcher| Works on Liquid Biopsy and Digital PCR
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Speaking to the Right People: Engage with people living with HIV/AIDS, healthcare professionals, policymakers, and related organizations. Asking Necessary Questions: Inquire about their daily difficulties, requirements, and where they believe researchers should concentrate their efforts. Developing a Specific Question: Based on these talks, develop a concise and specific research topic that addresses the acknowledged needs and requirements of the HIV/AIDS community.

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Sandeep Kumar, Ph.D.

Research Scientist II (All views are personal)
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What are the challenges faced by HIV/AIDS infected people living in urban and rural area to access the health care? are available health care facilities proper equipped according to the need of individuals living with HIV/AIDS?

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Elizabeth Adamu-Omoba Bsc (hons)MCB, MPHE

Assistant Principal Education Officer, M&E officer and Assistant Program Coordinator at University of Benin Teaching Hospital (UBTH)
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Carry out a baseline survey to identify areas or gaps that need intervention. Carry out a pilot study to collect data on those gaps identified Hold focused group discussion with healthcare workers, PLHIVs and care givers.

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2 Choose the research methods

The next step is to choose the research methods that are appropriate and feasible for the research question and the context. You can use a variety of methods, such as surveys, interviews, focus groups, observations, or participatory action research. The methods should be consistent with the principles and values of participatory research, such as respect, trust, reciprocity, and mutual learning. You should also involve people with HIV/AIDS in the selection, design, and testing of the methods, and ensure that they are culturally sensitive and ethical.

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Preetiparna Parida

PhD Scholar | Cancer Genetics Researcher | Molecular Virologist | Cervical Cancer and HPV Integration researcher| Works on Liquid Biopsy and Digital PCR
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Methods should be matched to the research question: Choose methods that are suitable for the research issue and setting, such as surveys, conversations, focused group discussions, or interactive research methods. Conform to Participatory Principles: Ensure that the methods chosen represent the principles inherent in participatory research, such as respect, trust, kindness, and sharing knowledge. Engage the Community: Involve the people living with HIV/AIDS in the selection, design, and testing of these techniques. Ensure Cultural Sensitivity and Ethical Behavior: Validate that the approaches used are culturally relevant and ethical for the participants.

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3 Recruit and train the participants

The third step is to recruit and train the participants for the research project. You should use a purposive or convenience sampling strategy to recruit people with HIV/AIDS who are willing and able to participate in the research process. You should also provide them with adequate information and consent forms, and address any potential barriers or risks to their participation. You should also train them on the research methods, skills, and roles that they will perform, such as data collection, analysis, or dissemination. You should also provide them with ongoing support and feedback throughout the project.

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T. J. Lee-Miyaki

SFSU Public Health Graduate 2024, Administrator HIV/AIDS Provider Network, SF HIV Community Planning Council Member, Facilitator Jeffrey's Place, a GBT Men's Cancer Support Group
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Casting the the widest net for participants is the best practice. The researchers need to connect and communicate with community members, stakeholders, ASOs, CBOs, and HIV/AIDS related local and state level planning councils. Also connecting with stakeholders within community groups and community centers that serve the group.

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Preetiparna Parida

PhD Scholar | Cancer Genetics Researcher | Molecular Virologist | Cervical Cancer and HPV Integration researcher| Works on Liquid Biopsy and Digital PCR
Report contribution
Identifying the Right People: Reach out to individuals in HIV/AIDS support groups or clinics, looking for those interested in joining our research. Sharing Information: Explain everything about the research and provide consent forms, making sure they understand what's involved and any possible risks they have. Preparing Everyone: Explain to the participants about data collection, and analysis to make sure they feel confident and ready. Staying Connected: Throughout the project, stay in touch, offer help and listen to their ideas or concerns to make sure they feel supported and valued in the process.

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4 Collect and analyze the data

The fourth step is to collect and analyze the data for the research project. You should use a participatory approach to data collection and analysis, which means that people with HIV/AIDS are involved in the planning, implementation, and evaluation of these activities. You should also use a mix of quantitative and qualitative data to capture the complexity and diversity of the experiences and perspectives of people with HIV/AIDS. You should also use a rigorous and transparent approach to data analysis, and ensure that the findings are valid, reliable, and credible.

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Preetiparna Parida

PhD Scholar | Cancer Genetics Researcher | Molecular Virologist | Cervical Cancer and HPV Integration researcher| Works on Liquid Biopsy and Digital PCR
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Working Together: Involve people who are living with HIV/AIDS actively to design the process of gathering data and help determine how the data will be analysed and applied. Integrated Data Diverse: Ensure a thorough grasp of the HIV/AIDS landscape, by integrating personal accounts and experiences from people impacted with statistical data, such as prevalence rates. Comprehensive Assessment: A thorough analysis of all the data should be carried out with a focus on doing repeated checks to ensure the accuracy and authenticity of the results associated with HIV/AIDS.

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5 Disseminate and apply the findings

The final step is to disseminate and apply the findings of the research project. You should use a participatory approach to dissemination and application, which means that people with HIV/AIDS are involved in the development, delivery, and evaluation of these activities. You should also use a variety of formats and channels to disseminate the findings, such as reports, presentations, publications, or media. You should also use a variety of strategies to apply the findings, such as advocacy, policy change, or practice improvement. You should also monitor and evaluate the impact and outcomes of the research project for people with HIV/AIDS and the broader community.

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6 Here’s what else to consider

This is a space to share examples, stories, or insights that don’t fit into any of the previous sections. What else would you like to add?

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What is the best way to design a participatory research project for people with HIV/AIDS?

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1 Identify the research question

2 Choose the research methods

3 Recruit and train the participants

4 Collect and analyze the data

5 Disseminate and apply the findings

6 Here’s what else to consider

Research Management

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