ENGAGING COMMUNITIES
IN HEALTH GEOGRAPHY?
ASSESSING THE STRATEGY OF COMMUNITY-BASED PARTICIPATORY
RESEARCH
by
Sarah A. Lovell
A thesis submitted to the Department of Geography
In conformity with the requirements for
the degree of Doctorate of Philosophy
Queen’s University
Kingston, Ontario, Canada
(September, 2007)
Copyright © Sarah A. Lovell, 2007
Abstract
Community-based participatory research (CBPR) positions community members on an equal footing with their academic colleagues and makes them responsible for the decisions which shape the direction and substance of research. The approach is founded on ideals of empowerment and the raising of critical awareness amongst stakeholders while contributing to social and community change.
This thesis examines the practice of CBPR; specifically, the inconsistencies between its ideals and the achievement of meaningful outcomes, and its relative absence within health geography. While the thesis relies most heavily on theories of social capital for its conceptual framing, it also draws on three key concepts stigma, and critical and oppositional consciousness. Three CBPR case studies were initiated to uncover the challenges, benefits, and shortcomings of the approach involving people living with HIV/AIDS, persons with disabilities, and residents of social housing. The projects were evaluated using a range of strategies including participant observation, interviews with key stakeholders, questionnaires, and focus group discussions. The implementation of these projects ranged in success from being sidelined by managerial difficulties, community mobilization efforts proving unsuccessful, to a fully realized CBPR case study.
The case studies illustrate the tenuous position of a researcher engaged in grassroots community mobilization and the need for core levels of social capital to precede the researcher’s intervention. Interviews with CBPR stakeholders exposed the sense of purpose and value of being united against a given cause and even the social benefits of connecting with others. The interviews brought into question the imposition of stringent research expectations upon community members who may face multiple barriers to carrying out research and gain little benefit from the practice. I conclude by suggesting that CBPR is a long way from being the perfect marriage of academia and community, failing adequately to meet the needs of both parties. In particular, the third case study demonstrates that stakeholders are critically aware of issues that affect their lives, their capabilities to carry out research and the roles that the researcher might play. Ultimately, this raises questions about what role CBPR might play in community mobilization, especially when the resources of groups are limited socially, economically and politically.
Table of Contents
Abstract iii
Acknowledgements iv
Statement of Originality vi
Table of Contents vii
List of Figures xii
List of Tables xiii
Chapter One: Introduction 1
1.1 Participatory Research & Its Discontents…………………….. 3
1.1.1 Participatory Research & Social Capital Theory……………. 7
1.2 Thesis Goals……………………………………………………… 8
1.4 Thesis Structure…………………………………………………… 9
1.5 Summary………………………………………………………….. 13
Chapter Two:
The Principles of Community-Based Participatory Research 14
2.1 The Background to Participatory Research……………….. 15
2.1.1 Toward a Participatory Paradigm………………………. 16
2.1.2 The Origins & Definition of Participatory Research……. 20
2.1.3 Empowerment…………………………………………….. 23
2.1.4 Scale………………………………………………………… 25
2.1.5 Values of Participatory Research………………………… 26
2.2 Participatory Research, Freire, & Bourdieu……………….. 28
2.2.1 Bourdieu & Social Space……………………………………. 32
2.3 CBPR as a Dynamic, Reflexive Process for Chang………….. 35
2.3.1 Social Action through Participatory Research………………. 37
2.3.2 Freire, Bourdieu, & Geographic Research………………….. 38
2.4 Summary………………………………………………………….. 39
Chapter Three: A Participatory Research Paradigm in the Context
of Health Geography 40
3.1 Epistemologies of Medical Geography….……………………….. 41
3.1.1 Empiricism & Positivism…………………………………………. 41
3.1.2 Disease Ecology………………………………………………… 43
3.1.3 Health Services Research…………………………………….. 44
3.2 Epistemologies of Health Geography………………………….. 46
3.2.1 Humanisim & Health Geography……………………………….. 51
3.2.2 Therapeutic Landscapes……………………………………….. 52
3.2.3 Social Constructionism & Health Geography………………….. 53
3.2.4 Risk………………………………………………………………. 53
3.2.5 Radical/Critical Epistemologies & Health Geography………… 54
3.2.6 Critical Disability Studies………………………………………… 55
3.3 A Participatory Paradigm for Research…………………………… 57
3.3.1 Participatory Research in Geography…………………………… 57
3.3.2 Participatory Research in Health Geography…………………… 61
3.4 Summary………………………………………………………………… 64
Chapter Four: Social Capital Theory & Participation in Civil Society 67
4.1 Introducing Social Capital………………………..….…………………… 67
4.1.1 Defining Social Capital…..……………………………..…………………. 69
4.2 Social Capital & the Individual…………………………………………….. 74
4.2.1 The Nature of Community Networks…………………………………. 76
4.2.2 Social Capital & Civil Society…………………………………………….. 80
4.3 Social Capital & its Place in Social Theory……………………………….. 86
4.4 Summary………………………………………………………………… 93
Chapter Five: The Limits of Community 96
5.1 Community & Social Capital………………………..….………………… 98
5.1.1 Social Diversity……………..………………………..…………………. 99
5.1.2 Stigma, Diversity, & Community……………………………………….. 102
5.2 The Importance of Place………………………………………………... 105
5.2.1 Health, Place, & Social Capital……………………………………….. 108
5.3 The Social Neighbourhood…………………………………………….. 110
5.4 Social Capital & Governance.………………………………………….. 113
Chapter Seven: The Case Study Context 151
7.1 Establishing the Three Case Studies…………………………………… 152
7.1.2 The Study City…………………………………………………..……….. 154
7.2 Case Study One: People Living with HIV/AIDS………………………… 154
7.3 Case Study Two: Persons with Disabilities………………………………… 157
7.4 Case Study Three: Age-Integrated Social Housing……………………….. 159
7.5 Cooperation from the Social Housing Organizations……………….……… 164
7.6 Organizational Relationships & Participatory Research………………….. 168
7.7 Summary…………………………………………………………………….. 171
Chapter Eight: Community Organizing & the Implementation of
Community-Based Participatory Research 173
8.1 Experiences of Stigmatization……….…………..….………………… 174
Chapter Nine: The Process of Community-Based Participatory
Research 203
9.1 Establishing Participation…………….…………….………………… 204
9.1.1 The First and Only Meeting with Organization B……….………… 204
9.1.2 Introduction to Organization A…………………………………….. 205
9.1.3 The First Project Meeting…………………………………………….. 207
9.2 Progression of the Project…………………………………………….. 210
9.2.1 Achieving Meaningful Community Involvement……………….. 210
9.2.2 The Second Project Meeting………………………………………. 213
9.2.3 Fluctuating Involvement……………………………………………. 215
9.2.4 Meeting Guests………………………………………………………. 217
9.3 Pushing the Research Agenda……………………………………….. 219
9.3.1 Establishing a Research Plan……………………………………… 220
9.3.2 Participation in the Data Collection………………………………….. 224
9.3.3 The Analysis and Interpretation of Research Data……………….. 226
9.3.4 Writing and Disseminating Research Results………………………. 227
9.4 Analysis of the CBPR Process………………………………………… 229
9.4.1 Identifying a Study Issue……………………………………………. 230
9.4.2 The Role of the Researcher…………………………………………. 231
9.5 Summary……………………………………………………………….. 233
Chapter Ten: Outcomes of the Community-Based
Participatory Research Process 235
10.1 Learning & Critical Consciousness……………………………… 236
10.1.1 Learning from the CBPR Process…………………………….. 237
10.1.2 Critical Consciousness……………………………………………. 242
10.2 Individual Empowerment………………………………………….. 245
10.3 Community Change……………………………………………... 249
10.4 Summary…………………………………………………………. 252
Chapter Eleven: Conclusions 254
11.1 The Implementation of CBPR………………………………… 255
11.2 The Research Imperative…………………………………….. 256
11.2.1 Questioning the Assumptions of CBPR……………………. 258
11.3 The Outcomes of CBPR……………………………………….. 259
11.3.1 Conscientization………………………………………………. 260
11.3.2 Empowerment…………………………………………………. 262
11.3.3 Social Change………………………………………………….. 263
11.4 Empowerment, Conscientization, and the Research Process… 264
11.4.3 Where do Academics Fit?......................................................... 265
11.5 Limitations of the Study…………………………………………… 267
11.6 Contributions of the Study……………………………………….. 269
11.7 Concluding Comments…………………………………………….. 271
in Geography Services
References 273
Appendices 287
1 Information Sheets & Consent forms………………………………….. 287
2 Participatory Research Questionnaire…………………………………. 296
3 Participatory Research Questionnaire Results………………………... 299
4 Social Housing CBPR Case Study Promotion………………………….. 300
5 Parallel Transit Study Research Proposal…………………………….. 301
6 Parallel Transit Study Ethical Approval……………………………….. 304
7 Parallel Transit Study – A Brief Summary of Results…………….…... 305
Chapter Eleven
Conclusions
Two years and three case studies after my first efforts to initiate community-based participatory research, I am working with a group of stakeholders to turn our research findings into positive action. Throughout the process, I have become infinitely more aware of the challenges people with disabilities face in the study city and more generally in society. I have reached a new understanding of the conditions which enable an idea for social change to become a reality. I have had the opportunity to work with a group of women who were able to educate me about their lives and, despite their health conditions and disabilities, committed themselves to the project. They worked through the challenges of declining participation and concerns over our insignificance to see the potential good that could come out of it.
I begin this conclusion by reviewing what I have learnt about the process of communitybased participatory research and how the process could better meet the needs of communities given the findings from the three case studies. I then take a more critical turn to question the assumptions upon which CBPR is based and how consistent these are with the goals of the process. Noting the failure to achieve intensive community involvement in all stages of the research, I then take a look at the key outcomes of participatory research (conscientization, empowerment, and social change) and discuss how central research was to their achievement. Before discussing the limitations of the study I consider where academics fit in the scheme of CBPR and where the future for academics and participatory research might better lead.
11.1 THE IMPLEMENTATION OF CBPR
The discussions within this thesis are founded upon social capital theory and Bourdieu’s conceptualization of the social and symbolic structures that shape society. These social relations have the potential to divide or unite groups within society but tend to act along social and economic lines distancing those who are educated or wealthy from those at the other end of the spectrum. Often in unconscious ways we act to distinguish ourselves from those groups who we deem to be different from ourselves. At its most extreme this is termed ‘symbolic violence’ by Bourdieu (1992) as we stigmatize and exclude those who are different from our lives. This practice was evident in the unsuccessful CBPR case study with people living with HIV/AIDS where widespread social stigma had permeated within the group to form a layered stigma creating even further artificial divisions which compromised the power of the group as a whole. Coming up against this kind of engrained social distance was too big a challenge for researcher-initiated CBPR to overcome and speaks to the value of developing long-term relationships within a community before implementing a project.
At another level social capital was seen to be fundamental to the success of CBPR by bridging relationships with gatekeepers, which allowed me to work with those marginalized groups who would be difficult if not impossible to contact otherwise. Gaining gatekeeper support is not, however, an easy task particularly in a sector where employees are over-worked and already vulnerable to criticism. Establishing a positive relationship with a gatekeeper organization is facilitated by long-term involvement with an organization, the use of social connections, and clear communication. The support and commitment of a gatekeeper group can determine the success of a project as the creation of opportunities to meet with potential stakeholders in a positive environment may vastly improve the likelihood of success of a CBPR project. Due to these later findings, I have no regrets over walking away from the organization where support was not forthcoming and would recommend others to do the same if caught in a similar situatio.
11.2 THE RESEARCH IMPERATIVE
The practice of CBPR is founded on the assumption that stakeholders can acquire research skills which will enable them to challenge future sources of oppression. In implementing CBPR, I aimed toward a co-learning level of participation in which I would collaborate with the stakeholders to plan the project, implement the research, and work toward social change. Decisions were to be made primarily by the stakeholders and I was to be a source of research skills and facilitation. The level of participation achieved, however, was much closer to a relationship of cooperation (see Figure 2.1) where priorities were determined by the community stakeholders, but the force behind the research remained with me as I was responsible for the bulk of the organization behind the project, ensuring the research happened, and creating momentum.
There was a significant period in which our roles were being negotiated because CBPR was new to both myself and the stakeholders. I initially sought stakeholder involvement in all aspects of the research, but quickly realized that there were activities they had little interest in (such as writing a research proposal) and that using meetings to discuss ideas would be a more inclusive way of structuring the project. As time went by and many of the able-bodied individuals dropped out of the project numerous health and accessibility related barriers came to the fore and prevented intensive involvement in the research process. In response I prioritized the focus for stakeholder participation with those research skills most useful to everyday life (primarily the facilitation of focus groups, the planning and decision making surrounding the project, and the analysis of the research data) rather than pursuing ethical applications or the writing of reports which they opted not to participate in. The rationale behind this ensured stakeholders saw the relevance of the project to their daily lives and did not get overwhelmed by the detail of research.
Much of the participatory research literature idealizes community participation and makes the argument that for participatory research to be meaningful stakeholders must be involved in all aspects of the research and learn skills which would enable them to repeat the process in the absence of the researcher (Cornwall, 1996). In carrying out the final interviews with the most active stakeholders it became evident that they did not wish to be involved in all aspects of the research, nor did they see it necessary to their continued activism in the area of disability issues. While it was evident that they saw research as a valuable tool, the stakeholders positioned themselves as spokespersons and idea generators rather than co-investigators in the research process. These roles put the stakeholders at the centre of the problem at hand and allowed them to focus more on the big picture than the details of the research – a strategy which potentially contributes to the conscientization process.
The great majority of the CBPR literature focuses on the opportunities the researcher provides stakeholders to participate in research. Frequently cited as a limitation of CBPR case studies are limited opportunities for stakeholder control. This research, in contrast, highlights the circumstances which may limit a community’s ability to get involved and suggests that community collaboration may not be possible in all aspects of the research but that this need not be a shortcoming of the approach. Rather, it may indicate that the goal of community empowerment through research may be misplaced, that there may be alternative strategies for engaging and working with communities that have more resonance with the community itself.
11.2.1 Questioning the Assumptions of CBPR
A hierarchy of participation is evident in much of the CBPR literature which places research driven by the community as the ultimate goal. While criticism of the unattainable nature of pure community-driven research have been made (Maguire, 1997), intensive community involvement remains the panacea for achieving empowerment through participatory research. Interviews with the stakeholders involved in the present research raised two important issues which undermine the assumptions upon which CBPR is founded:
First, the present decline in social capital, discussed extensively in Chapter Four, tells us that amongst the things standing in the way of community involvement are high workloads, long commutes, isolating technologies, and a generation of disengagement. These broader social changes are compounded by the challenges which marginalized groups face in becoming civically active. The stakeholders discussed at length the difficulty of being involved in the research process when hospitalization, multiple medical appointments, and poor health stood in the way. For some participants following up a day of medical appointments with a committee meeting was an exhausting experience and one that they felt hindered their ability to make a meaningful contribution to the meeting. It is a paradox of participatory research that those who might benefit most from being involved in the process are also those who face the greatest barriers to participation. The fact that those individuals who carried on through the process faced many complex chronic health conditions yet did not cease involvement speaks to the value of being flexible in the research approach and responsive to stakeholder’s needs. That the group was small no doubt made it easier to schedule meeting times and locations around the needs of those individuals for whom attending meetings was most difficult.
Secondly, the assumption that community members will benefit from carrying out research through their ability to use those skills following the researcher’s exit from the scene is fundamentally flawed. The interviews with stakeholders made clear that they were involved in the process of carrying out research as much as they were able and willing to be. While one stakeholder expressed frustration that her health condition prevented her from facilitating more focus groups overall, she was content with her contribution and saw no need to make the process more participatory. Assuming that stakeholders want to carry out research in many respects undermines the participatory process as it gives them little choice over whether the project should even involve research and requires they devote time to a process which may hold little relevance to their everyday lives and be of little use to them in the future.
11.3 THE OUTCOMES OF CBPR
Participatory research, as conceived of by Freire (1970), espouses education as a means of conscientization, that is, becoming aware of the social processes which reinforce oppression and thus one’s own position in society. An educator, Freire (1970) sees the role of the researcher in participatory research as one who must facilitate the enlightening of the stakeholders, a process achieved by their involvement in transforming their own realities. This understanding of participatory research is translated into a philosophy of CBPR by the likes of Hall (1998) who proclaim the process of involving stakeholders as research co-investigators to be the unifying basis of this participatory strategy. In this respect, CBPR differs from participatory action research and participatory methods where the stakeholders are more likely to be involved as research participants rather than conceiving of ideas themselves.
11.3.1 Conscientization
Despite limited involvement by the stakeholders in the practice of carrying out research, most of the findings from the concluding interviews indicated that a level of the stakeholders possessed a critical awareness of the systemic problems facing people with disabilities. Most participants noted that their perceptions of disability issues had changed over the course of the project, suggesting the CBPR process had a role to play in this awareness. Specifically, when discussing the parallel transit services, stakeholders moved away from identifying the management of the parallel transit service as the primary root of the problem toward an understanding of the role of others in speaking out as a means of changing things. There was a new recognition of the strength of political processes, but an acknowledgement that through voicing opinions things could change particularly where large numbers are involved.
Fundamental to the conscientization process was the involvement of a stakeholder late in the process who had a long history of disability activism. This individual was engaged in local government committees and was familiar with province wide disability legislation. She instigated discussions around strategies wheelchair users could adopt to navigate better the city in general and the parallel transit service. Her involvement extended the breadth of experience and comfort the group had with activism and her energy levels had us all in awe. Her involvement also indicated the extent to which ill-health could impact on stakeholder engagement. While she experienced chronic neck pain this was a minor condition when compared with the health issues affecting the other stakeholders. While Kobayashi (2001) points to the importance particularly of class and gender contributing to diversity, in this instance health was the primary demarcating factor. This woman’s long involvement in disability issues and the health conditions which had severely affected her mobility meant that she was still very attuned to the needs of all persons with disabilities. It also meant that rather than being a divisive force, she was fundamental to achieving a consistently critical position in which the participants were a force with a common political direction being that all stakeholders saw accessibility as a right rather than a privilege.
Amongst the pivotal points in the project was the facilitation of a focus group by stakeholders in which a participant voiced her opinion that users should be grateful about the parallel transit service and the failure to see the benefits of it was a function of individual perspective rather than real experiences. This woman’s statements in contradicting the position of the stakeholders was a solidifying force in that the stakeholders, as a group, in later discussions rejected her point of view and lamented the fact that so many people with disabilities simply accept the status quo rather than working toward equality.
11.3.2 Empowerment
Empowerment is notoriously difficult to measure and for this reason many discussions of whether empowerment was achieved through participatory research are fundamentally flawed. For the purposes of this thesis, empowerment was functionally defined in terms of an individual’s commitment to carrying out actions which may improve their own quality of life. The stakeholders who saw the research process through to the end, illustrated how complex the notion of empowerment in their discussion of the difficulty of achieving real change due to the social and political factors which stand in the way. These individuals, however, also professed a commitment to seeing the process through and were active in identifying new areas where a future project could expand on what they had already achieved.
Most significantly, all of the stakeholders professed the need to continue on with the project but to expand it by looking at other accessibility issues. One stakeholder specifically noted the difficulty of getting into stores, the others suggested a need for a project looking at access for persons with disabilities in the study city more generally. The stakeholders were generous when discussing my own role in the research but also raised strategies for furthering the research without me (e.g., by gaining the help of another graduate student). If we take the success of CBPR to be the implementation of further action without the researcher’s involvement, then this project may yet prove to be successful.
Based on my experiences with CBPR, I do not see the ability for communities to become self-sufficient in their activist efforts as a marker of success of the project. Rather, I would argue, success is based upon the ability to mobilize and work toward action. Those communities which draw upon resources of social capital, whether it be through non profit organizations or connecting with other graduate students, are illustrating as much potential for social change as a community group capable of carrying out their own research. The assumption that community members need to become researchers to succeed may even be disempowering when we consider how much more efficient and effective a graduate student might be in carrying out research on behalf of the community.
11.3.3 Social Change
The evaluation of the CBPR social housing case study took place at the completion of the research, but prior to the social action stage was seen through to the end. For this reason, I had anticipated research stakeholders would not feel they were effective in achieving community change and might even have been discouraged by the lack of traction achieved with other social housing residents. These concerns were completely unfounded as two of the central stakeholders had over several weeks experienced significant improvements to the parallel transit service we were studying both in terms of customer service and availability of the buses. This perceived improvement in the parallel transit service was directly credited by the stakeholders to the work that we had done and awareness by the parallel transit service of the project.
Perhaps even more significantly, the stakeholders felt that the work we were doing had the potential to go beyond impacting on their own bus use to impact positively the community at large. Even in the face of frustrations over few people becoming engaged in the process and the difficulty of countering strong political forces, the stakeholders voiced a belief that their involvement was worthwhile and was contributing to some good on a wider scale. I suspect that the belief that one is achieving something for the wider social benefit may be fundamental to the success of CBPR.
11.4 EMPOWERMENT,CONSCIENTIZATION &THE RESEARCH PROCESS
Rather than looking toward research as the panacea for achieving empowerment and conscientization, I believe we need to look toward strategies that enhance the skills community members use on a daily basis, particularly interpersonal skills, which build relationships with others. Within the CBPR literature there has been a blind acceptance of the value of research. We need to examine whether other strategies are better at fostering empowerment and critical consciousness and better understand the connections between social capital and empowerment. It is clear from the present research that the withdrawal of individuals from efforts to mobilize against a given cause is disempowering and undermines the process of social action.
There is a significant gap in the literature regarding how empowerment is achieved through processes of social action A large part of the reason for this gap is the time consuming and unpredictable nature of these kinds of social experiments. In this instance, it took two unsuccessful case studies before a community was mobilized and the participatory research process instigated, yet even with a successful project established, the methods of evaluating empowerment and conscientization had to be modified to address the concerns of the stakeholders. For these reasons, I see the need for long-term participant observation of grassroots social activism to be necessary if we are to gain a better grasp of how community processes contribute to empowerment and critical consciousness.
11.4.3 Where do Academics Fit?
In identifying the need for a better understanding of how empowerment and conscientization are fostered at the community-level, I am quite deliberately leaving academics out of the empowerment equation. My reasons for this are multiple:
First, I see an inconsistency between the open-ended employment of CBPR and academia. While community derived research problems, such as the shortcomings of the parallel transit service in the study city, are socially important issues and might further the position of a marginalized group in society, these problems are rarely original and in this sense do little to extend our knowledge. While others might disagree, I see the primary role of academic researchers to be the furthering of societal knowledge. Addressing the needs of communities is an infinitely worthwhile task; however, this is a role filled by government, non-profit, and volunteer sectors so should academics be replicating this work? To play devil’s advocate to my argument in Chapter Four that academics have become more responsive to the power relations embedded in research, the increased adoption of participatory research by academics might be a reflection of the declines in social capital we are witnessing. Increased work loads and reduced leisure time might be leading academics to pursue altruistic activities through their everyday work due to a lack of recreation time with which to devote to volunteer activities. Regardless of the motivations, CBPR does represent a research approach with significant repercussions for the furthering of knowledge. If we disregard the history of research and foster research problems that are purely responsive to community needs, we might just make ourselves redundant particularly given that CBPR does not lend itself to overly theoretical analytical approach.
Further complicating this discussion is the very fact that the goals of academics have changed. Academics, Kearns and Moon (2002) argue, are as much shaped by neoliberalism as the research subjects they study. The generation of external funding means that participatory research strategies face either the competing needs of an external funding agency or chronic under-funding. Combine this with the need for researchers to produce publications and we see the potential for participatory research to be exploited in just as many ways as traditional forms of research. Naylor et al., (2002) for example, explain that funding from Health Canada necessitated the adoption of a more rigid assessment procedure in their community heart health project and led a number of staff and partner organizations to exit the project due to frustrations that new rules were being set late on in the project.
Secondly, my unsuccessful efforts at establishing participatory research case studies in two settings, with people living with HIV/AIDS and with a disability organization illustrates the difficulties of carrying out this form of community-based research and, specifically, with the researcher taking on the role of community mobilizer. These case studies indicate that social capital cannot be manufactured. Rather, it must come from within a community, and these communities are almost exclusively distanced from the privileged realm of academia. Devoting extensive effort to mobilizing communities is not an efficient way of doing research and in many instances may replicate the activities that social workers are already carrying out. Developing stronger partnerships with social service agencies may be one response to this problem but it also comes at the cost of drawing on what may be the already stretched time and resources of these individuals and brings another element of disempowerment into the research process.
Finally, the assumption that the identification of an issue of concern will naturally develop into a research-based resolution is flawed. In the social housing case study, two problems were identified: the first, a lack of social activities for seniors; and the second the poor services of the parallel transit service. While a research project focused on what social activities are needed for seniors could have been developed, this issue is best dealt with through immediate action and adding the intermediary step of research likely would have alienated the stakeholders. In this instance, we addressed two issues – one through research and later action, the other through action. Implementing participatory research with people living with HIV/AIDS was also complex. The diversity in opinions meant that no single issue for research was easily identifiable and perhaps a process of capacity building within that community would have been a beneficial next step prior to attempting to implement CBPR.
11.5 LIMITATIONS OF THE STUDY
Implementing CBPR was never going to be an easy or straightforward process; however, a number of unanticipated problems emerged which limited the effectiveness of the evaluation procedures. I will focus here primarily on the successful case study as the stalled case studies have already been discussed in-depth. The methods I initially proposed for evaluating the process of CBPR were founded on the assumption that a minimum of eight stakeholders would be sought to participate in the project and with attrition there would still be at least six individuals engaged at the end of the process. The reality was much messier as the majority of the seven individuals who began the process either ceased involvement or were peripheral to the project by time the evaluation came near the end. This meant that the surveys I had designed to be carried out before and after the project’s implementation were no longer useful in indicating change. Furthermore, the number of people who were central to the project at its conclusion were so few in number as to undermine any notion of the surveys being anonymous. This problem also negatively impacted on the final evaluation interviews as rather than drawing from a rich array of perspectives, instead I heard from only the four most active stakeholders. An additional two were peripheral to the process attending occasional meetings, but not actively participating in the decision making process.
The addition of new stakeholders throughout the study created a further dilemma as it was not until the stakeholders were involved in the process for some time that these individuals really understood the goal of what I was trying to achieve in terms of evaluating the process. This led to an ethical dilemma regarding whether I needed to gain the consent of these individuals to carry out participant observation when their involvement might only be short term. Ultimately, they continued to the completion of the project and I was able to explain fully the nature of my own study to them and gained their support and consent.
The second difficulty I came upon was the resistance of stakeholders to particular forms of evaluation. The stakeholders failed to see the need for initial interviews and when it came to the completion of project diaries – an approach which was to balance out my own process of participant observation – none were keen. While I have tried to achieve balance through the use of ‘focus group’ material (i.e., transcripts from portions of project meetings where we reflected on the research process), there is a distinct lack of stakeholder input in my discussion of the research process.
On a broader scale the three case studies in themselves reflect study limitations. The three groups represent heterogeneous populations, which hinders group comparisons.
Secondly, and reflecting the views of Freire (1970) that the oppressed have most to benefit from their involvement in research the three groups are relatively marginalized within society. Case studies may have been established more easily in middle-high income settings where levels of social capital are likely to be higher as individuals have greater resources at their disposal.
11.6 CONTRIBUTIONS OF THE STUDY
This study examined the process of CBPR and its relevance to the sub-discipline of health geography. In doing so CBPR emerges as an approach that fosters social relations within communities by building on social capital, it provides stakeholders with the opportunity to learn and experience individual empowerment from their roles in the project, and it can lead to community change. These case studies highlight the necessity of existing stocks of social capital to be in place for community mobilization efforts to be successful. The research indicates that without these stocks of social capital an oppositional consciousness is unlikely to be realized.
A number of shortcomings also emerged throughout the CBPR process; in particular a disconnect was evident between the respective value the researcher and the community stakeholders placed in the importance of research. As researchers, we must be responsive to the needs of participants and break down the power imbalances which impinge on social science research. Community-based participatory research, however, might not be the ideal way of doing so due to the disconnect between the goals of CBPR and academia. Community stakeholders do not appear to need intensive involvement in the research end of the project to experience empowerment. Nor should we assume that they want this intensive involvement. There are many positive reasons for involving community members as co-investigators in the research process and relatively few negative effects. This does not, however, mean that research is the most effective way of enabling empowerment and conscientization in a process of social activism nor does it mean that CBPR is the best practice for researchers.
This research has many implications for health geography. Firstly, the research findings illustrate the difficulty of achieving meaningful participation with individuals who are managing multiple and complex health conditions. Efforts to work with these groups must acknowledge the energy, time, and resource constraints experienced by these individuals as well as the frequent frustrations they experience at not being able to make commitments due to their health. The implementation of CBPR is likely to be more complex in health geography than in other streams within the discipline due to the complications experienced by those whose health is compromised.
Secondly, the social housing case study’s focus on the parallel transit service indicates the wealth of research topics upon which health geographers and communities may collaborate. The obscure nature of health geography in the eyes of the broader public need not be a hindrance to CBPR, rather, the possibility for research that is deeply applicable to the social realities of marginalized individuals is a strength of the subdiscipline and a strong argument in favour of the greater use of participatory research strategies. I must, however, frame this finding within the broader discussion of the necessity that we continue to look at ways in which communities may be engaged with academia in inclusive ways, ways which may not include research as a central component to achieving empowerment.
There is still much that geographers in general may contribute to the discussions of CBPR. These case studies raise issues around the nature of social capital, marginalization, and stigmatization in small cities; issues which have been paid little attention until now. The implementation of these case studies within a small city restricted the pool of potential participants and may have had implications for the likelihood of individuals choosing to participate due to the lack of anonymity within a location of this size. Further investigations are needed into the role of scale in shaping landscapes of exclusion, and for influencing everyday community participation amongst those who do experience stigma.
This thesis contributes to a broader understanding of social capital and may be extended through further investigation into the way that networks form during the instigation of community-based participatory research and the evolutionary nature of social networks. On another level, the research connects with literature on the voluntary sector. It signals the need for further examination of the way in which funding and organizational structures of non-profits help and hinder the implementation of community-based research and other initiatives within that sector. Finally, this research may be built on by examining discussions of activism and exploring where the role of the research can and should intersect with communities in working toward social change.
11.7 CONCLUDING COMMENTS
The participatory research process works toward an ultimate goal of implementing community action. The form which participatory action takes hinges on the continued momentum of the stakeholders in the research process and the findings of the preceding research. Sustaining high levels of community motivation are key throughout the participatory process to achieving real change; and change is likely to be more meaningful where community involvement is high. 271 (Green, 1986, as cited in Institute of Health Promotion Research, 1995)
Many challenges were met over the course of implementing CBPR challenges within the current research, which forced the end of many case studies before they reached the participatory stage. Overwhelmingly, however, these challenges were a function of the difficulty of mobilizing communities rather than a failure of the CBPR approach per se. This research highlights the complex nature of community structures and the importance of social capital to fostering an oppositional consciousness. The case study with people living with HIV/AIDS, for example, was disbanded in response to a lack of critical mass or collective voice but not a lack of need for action. If we focus on the nature of the successful case study in which research was initiated and carried out, and in which the stakeholders felt they were able to determine their own levels of involvement, then we can see that once the hurdle of community mobilization has been overcome then CBPR may be a valuable tool for communities. Community based participatory research is a rewarding way of carrying out research as there are tangible benefits to the community involved both directly, through the achievement of social change (in this case addressing the parallel transit service) and indirectly, in terms of community engagement in addressing sources of marginalization and increased potential to achieve social change.
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