Literature DB >> 16828213

The role of power, process, and relationships in participatory research for statewide HIV/AIDS programming.

Kimberly Chung1, David W Lounsbury.   

Abstract

This paper presents a case study of a participatory process that was used to understand the needs of persons living with HIV/AIDS in a US state. The case illustrates that participation in a community-based research project is a dynamic phenomenon that must be negotiated among an evolving web of roles and relationships. Using a continuum to model the multiple modes of community participation, we follow the changing nature of participation over the course of a single project. Our analysis illustrates the different levels of participation given by the continuum as well as the dynamic nature of participation. A shared understanding of participation evolves as the roles and relationships of those involved are negotiated and renegotiated. However, lack of reflection over power differentials can lead to disempowering outcomes even after achieving a seemingly participatory process. The case reveals that failing to resolve divergent assumptions about power and purpose can lead to fissures that are difficult to overcome.

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Year:  2006        PMID: 16828213     DOI: 10.1016/j.socscimed.2006.04.035

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  9 in total

1.  Recruitment of HIV positive and negative women in Puerto Rico: the experiences of a research team.

Authors:  Nanet M Lopez-Cordova; Wanda I Figueroa-Cosme; José A Capriles
Journal:  Ethn Dis       Date:  2010       Impact factor: 1.847

2.  A Practical Framework for Navigating Ethical Challenges in Collaborative Community Research.

Authors:  Joyce Hunter; David Lounsbury; Bruce Rapkin; Robert Remien
Journal:  Glob J Community Psychol Pract       Date:  2011-01

3.  Patient and Caregiver Experiences and Attitudes about Their Involvement in Research in Chronic Kidney Disease.

Authors:  Talia Gutman; Ayano Kelly; Nicole Scholes-Robertson; Jonathan C Craig; Shilpanjali Jesudason; Allison Tong
Journal:  Clin J Am Soc Nephrol       Date:  2022-02       Impact factor: 10.614

4.  Using community engagement to implement evidence-based practices for opioid use disorder: A data-driven paradigm & systems science approach.

Authors:  Nabila El-Bassel; Louisa Gilbert; Tim Hunt; Elwin Wu; Emmanuel A Oga; Trena I Mukherjee; Aimee N C Campbell; Nasim Sabounchi; Damara Gutnick; Robin Kerner; Kamilla L Venner; David Lounsbury; Terry T K Huang; Bruce Rapkin
Journal:  Drug Alcohol Depend       Date:  2021-03-18       Impact factor: 4.492

5.  "A place at the table:" a qualitative analysis of community board members' experiences with academic HIV/AIDS research.

Authors:  Stella Safo; Chinazo Cunningham; Alice Beckman; Lorlette Haughton; Joanna L Starrels
Journal:  BMC Med Res Methodol       Date:  2016-07-11       Impact factor: 4.615

6.  Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research.

Authors:  Katharina Beier; Mark Schweda; Silke Schicktanz
Journal:  BMC Med Inform Decis Mak       Date:  2019-04-25       Impact factor: 2.796

7.  Exploring Community Mental Health Systems - A Participatory Health Needs and Assets Assessment in the Yamuna Valley, North India.

Authors:  Kaaren Mathias; Meenal Rawat; Anna Thompson; Rakhal Gaitonde; Sumeet Jain
Journal:  Int J Health Policy Manag       Date:  2022-01-01

8.  Flourishing together: research protocol for developing methods to better include disabled people's knowledge in health policy development.

Authors:  Rachelle A Martin; Angelo P Baker; Kirsten Smiler; Lesley Middleton; Jean Hay-Smith; Nicola Kayes; Catherine Grace; Te Ao Marama Apiata; Joanne L Nunnerley; Anna E Brown
Journal:  BMC Health Serv Res       Date:  2022-10-17       Impact factor: 2.908

9.  "Back into Life-With a Power Wheelchair": Learning from People with Severe Stroke through a Participatory Photovoice Study in a Metropolitan Area in Germany.

Authors:  Tabea Böttger; Silke Dennhardt; Julia Knape; Ulrike Marotzki
Journal:  Int J Environ Res Public Health       Date:  2022-08-23       Impact factor: 4.614

  9 in total

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