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

被引:35
作者
Chung, Kimberly
Lounsbury, David W.
机构
[1] Michigan State Univ, Dept Community Agr Recreat & Resource Studies, E Lansing, MI 48824 USA
[2] Mem Sloan Kettering Canc Ctr, Dept Psychiat & Behav Sci, New York, NY 10022 USA
关键词
participatory research; community participation; community-based research; power; HIV/AIDS; Ryan White Care Act; USA;
D O I
10.1016/j.socscimed.2006.04.035
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
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. (c) 2006 Elsevier Ltd. All rights reserved.
引用
收藏
页码:2129 / 2140
页数:12
相关论文
共 38 条
[1]  
Adrien A, 1996, CAN J PUBLIC HEALTH, V87, pS4
[2]  
Alvesson M., 2000, REFLEXIVE METHODOLOG
[3]  
[Anonymous], 2003, COMMUNITY BASED PART
[4]   LADDER OF CITIZEN PARTICIPATION [J].
ARNSTEIN, SR .
JOURNAL OF THE AMERICAN INSTITUTE OF PLANNERS, 1969, 35 (04) :216-224
[5]   DEVELOPING CLINICAL-TRIAL PROTOCOLS - THE USE OF PATIENT FOCUS GROUPS [J].
BRADBURN, J ;
MAHER, J ;
ADEWUYIDALTON, R ;
GRUNFELD, E ;
LANCASTER, T ;
MANT, D .
PSYCHO-ONCOLOGY, 1995, 4 (02) :107-112
[6]  
Connor D. M., 1988, NATL CIV REV, V77, P249, DOI [DOI 10.1002/NCR.4100770309, 10.1002/ncr.4100770309]
[7]  
Cook H L, 1988, Fam Community Health, V11, P1
[8]   From users and choosers to makers and shapers -: Repositioning participation in social policy [J].
Cornwall, A ;
Gaventa, J .
IDS BULLETIN-INSTITUTE OF DEVELOPMENT STUDIES, 2000, 31 (04) :50-+
[9]   What is participatory research? [J].
Cornwall, A ;
Jewkes, R .
SOCIAL SCIENCE & MEDICINE, 1995, 41 (12) :1667-1676
[10]   THE RIGHTS OF PATIENTS IN RESEARCH - PATIENTS MUST COME FIRST IN RESEARCH [J].
GOODARE, H ;
SMITH, R .
BMJ-BRITISH MEDICAL JOURNAL, 1995, 310 (6990) :1277-1278