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NAPCRG Policy Statement, November 6, 1998 - page 2

TABLE OF CONTENTS

Education and capacity-building

By its very nature, PR is an impetus for change, by relating knowledge to action[88]. First, community members become equal partners in all aspects of the research, including any action arising from the project. Second, it is a bi-directional education process, in which researchers and the community learn from one another and share expertise and knowledge. Third, PR is a process that is interactive, and co-learning is a central feature of the process, in contrast to the unidirectional model of outside researchers providing education to the community members [89]. Fourth, PR focuses on concrete problems. Finally, benefits must accrue to the community.[5 88 90].

The PR process is iterative; action and reflection are intertwined in the evolving project [32]. Education occurs throughout the entire PR process, but chiefly through what Freire calls the dialogic method, whereby community members apply their insights and experiences to problem solving [51]. Dialogue is undertaken to prepare for partnership (capacity building), assess the needs and interests of all participants (community, researchers, institutions, funding-agencies), establish a dynamic relation between community needs and research strategies, allow for on-going consideration of broader (or other) contexts, and encourage on-going reflection by all participant [91, 92]. Goulet, in his introduction to Freire's book, states: "If...one is to adopt a method which fosters dialogue and reciprocity, one must first be ideologically committed to equality, to the abolition of privilege, and to non-elitist forms of leadership wherein special qualifications may be exercised, but are not perpetuated." [93].

Encouraging people to think critically about their surroundings puts social problems in a broader political, social and economic context. Disadvantaged people tend to believe that their oppression is their fault [94], a phenomenon that Paolo Freire calls the "doctrine of personal culpability." [95] A central goal of the PR process is the transfer of knowledge, which sets the community on a course for autonomy [32 57]. PR becomes a means of fostering action [32] by involving communities in formulating research questions, collecting and interpreting the data, disseminating and implementing the results.

CONSIDERATIONS AND CHALLENGES

Ethical considerations

Just as research approaches have changed in the last half of the twentieth century, the post war period has witnessed the further articulation of ethical principles that govern research involving humans. These principles continue to evolve in response to the technical capabilities of science as well as to society's social and moral standards.

The three internationally recognized cornerstones of ethical research are:

  • respect for autonomy of the person;
  • non-maleficence (to do no harm) and beneficence (to do good to others);
  • social justice. [96,97]

These principles emphasize the importance of informed consent, open acknowledgement and assessment of the risks and benefits of the research and the importance of protecting potentially vulnerable people. [98]

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Codes of ethics

The initial development of research ethics concentrated on the researcher's responsibility to individual research subjects. Current approaches address the additional challenge of meeting the ethical needs of researchers, individuals and communities [54 99,100]. The Council of International Organizations of Medical Sciences (CIOMS) states that "the community to be studied should be represented in the review process ... it should not be considered that lack of formal education disqualifies community members from joining in constructive discussion on issues relating to the study and application of its findings." [101]. In recent years institutions, professional organizations, local groups and communities have developed their own ethical codes to incorporate community needs into their broad research guidelines [74]. The draft of the new Canadian Tri-Council policy statement on Ethical Conduct for Research Involving Humans recommends a participant centered approach to research and recognizes that differences exist in the ethics of research undertaken with defined communities [102].

These developments indicate that researchers must now consider whether it is appropriate for an Institutional Review Board (USA), Ethical Review Board (in Canada), Human Subjects Committee, etc, to judge the suitability of a research project that involves a community, if that project does not involve the community's participation and input. The establishment of ethics review bodies is sound; the question is the current nature of the review process.

Experience has shown that participatory research is strengthened by ethical guidelines and written agreements to ensure the sharing of leadership, power and decision making from design to dissemination of results [103,104]. Every participatory research project is unique and the collaborating parties should jointly negotiate ethical guidelines before research commences. These guidelines, written at the appropriate literacy level [105], will identify the issues, maximize close collaboration between researchers and the community, and reflect local culture, needs and interests.

Experts in participatory research [5], national organizations [106], universities[107], professional groups [108] and Native organizations [22 109,110,111,112] have developed ethical guidelines and checklists. These documents identify principles and obligations for the four phases of a research project: design, implementation, data analysis and interpretation, and dissemination of the results.

The front-line collaborators from each setting-for example academicians and members of a community-together develop a research agenda. These people, however, are not negotiating so much on behalf of, but in consultation with the institutions they represent. The standards and principles of these institutions will guide them. The ethical and procedural issues to be successfully negotiated include: the roles and responsibilities of each collaborator (including researchers and community representatives), the desired outcomes of the research, measures of validity, control of the use of data, control of funding, and the channels/mode of dissemination of the research findings. The outcome of this process is a working relationship based on an articulated set of research questions that is acceptable to all of the research partners; a task that can appear quite daunting at the start of any collaborative research effort. The roles and responsibilities of team members may shift during the research project, a potentially sensitive prospect that can best be managed in an established atmosphere of trust and mutual respect. Another important outcome is capacity building of all partners as collaborators, including training, enhanced infrastructure, control of data collection and storage, a stronger receptivity to collaboration by researchers, and a stronger community voice in policy design[113]. Sustained capacity-building efforts cannot be undertaken in a piecemeal fashion.

Discussion of all the results with the community allows for joint interpretation of the data, and modification if necessary before dissemination. These steps strengthen the cultural and final validity of the results, minimize harm (i.e. both outsider stigmatization of individuals and the community and self-stigmatization) and encourage community education and autonomy. Dissemination of the results includes oral and written presentations in the final report in the both the lay and scientific press as well as the media.

There are many examples where health researchers retained full control or only involved the community at a superficial level. Lack of community involvement has been particularly obvious at the time of scientific publication. In reaction to this some communities have requested veto power for all or part of the publication process, or if necessary, requested that, reports go only to the funding agency [111 114,115]. A alternative solution is that the variant viewpoints be included in reports/publications [74]. Researchers should avoid unilateral decisions, which may inadvertently be ethnocentric [15], and be cognizant of the fact that ethical principles espoused by communities may adopt a different emphasis from those embraced by the traditional research community [116]. For example, the principle of respect for autonomy of the individual may, in some Aboriginal communities, be of lesser importance than respect for autonomy of the community as a whole. Based on his experience with Aboriginal peoples in Ontario, Brant discusses four principles that he believes are embedded in those groups: non-interference; non-competitiveness; emotional restraint; and, sharing [117]. It is therefore extremely important that researchers familiarize themselves as thoroughly a possible with the cultural norms of the communities with whom they intend to collaborate.

Therefore consensus should be negotiated for:

  • the research goals and objectives;
  • the methods and duration of the project;
  • how community members can be partners on the research team;
  • degree of confidentiality;
  • strategy for evaluation process;
  • interpretation and control of data, knowledge of where data is filed, current and future use of the data and human biological material;
  • responsibility for resolving issues arising from the research;
  • if and how new researchers can be incorporated into an existing team; and
  • joint dissemination of the results in lay and scientific terms to both the communities and the scientists.

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Empowerment

The issue of empowerment comes up consistently in the PR literature [118]. Small has stated that empowerment is a primary goal of community research [42]. Rappaport observes that if a research approach has within its framework the empowerment of the community then empowerment by definition should be concerned with those who are excluded by the majority society on the basis of demographic, physical, emotional or cultural differences or difficulties, either in the past or in the present [119]. The use of the term empower is contradictory in the literature, however. Power, by its very nature, is gained or lost, not given. Power that is given is actually a subtle form of control, of the "giver" over the "receiver". Labonte [23] suggests that "continually stating 'we need to empower this or that group' creates and reinforces a world of professional practice in which non-professional groups are incapable of their own 'powerful' actions." No researcher can empower another individual; the empowering process must come from within the disempowered group or individual. Researchers can, however contribute to the creation of an environment wherein empowerment may occur [120].

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Addressing complexity

PR mandates an ongoing relationship. The ethical commitments embedded in the PR process relate to social change, ownership of the research process, and control over research questions and results. As integral and important as the commitment to collaboration may be, there are no guarantees that the participatory research process will not fall prey to the vagaries of human nature. For example, a self-selected individual who purports to represent the community may greet the researcher at the outset of a project, screening access to other community members. So also may the researchers be so deeply embedded within their own academic disciplines that they may be unable to share their traditional power.

This distinction between researcher/other persists in the literature, as in Bartunek and Louis' recent Insider/Outsider Team Research [121]. It is argued that researchers who are insiders to a setting being studied often have a particular view of the setting and their findings may be quite different from those of the outside researchers who are conducting the study. These differences have significant implications for the quality of knowledge that will be gained from the research, its potential to enhance insiders' practice, and the relationship insiders and outsiders have with each other.

This discussion suffers the usual effects of generalizations, by imposing homogeneity on both the insiders and the outsiders. Insiders do not necessarily share a common perspective; people within any culture or community are differentiated by many variables including gender, age, economic status, religious beliefs, and political affiliations [122]. Although the insider/outsider dichotomy may be useful for academic discussion, it belies the complexity of the characteristics of the range of collaborators. The insider/outsider distinction can become an unnecessary barrier to the establishment of the trust relationship, which Bartunek and Louis correctly identify as an essential component of collaborative partnerships. Research becomes more relevant and data more accurate when the roles and agendas of all collaborating partners are defined. The research community is complex, including institutional and government representatives, ethnically identified health personnel, and geographic community representatives.

Attention to community development does not guarantee successful knowledge development or vice versa. Many projects don the garments of community participation, but fail to realize this goal in any substantial way [123]. It is one thing for a process to be credible and legitimate insofar as it may lead to better conditions for life. It is quite another matter to claim that such a process constitutes research. Participatory research is, or should be, more than community development under the auspices of research [124].

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Solving problems and resolving conflicts

The research partners or team players may change as the project develops, when new members with specific theoretical, methodological and experiential skills are recruited [125]. The complexity of the agendas of the various partners in PR and the ambiguous nature of the research environment can raise difficult issues regarding the roles of the participants and the intended outcomes of the research project. Although the ideal process has been described here thus far, the potential for conflict should be acknowledged, and even anticipated by building in mechanisms for addressing changes in personnel, research design, and changes of mind [65]. People conduct PR; this truism is meant to point out the possibility that one or more participants can change their minds during the research process, with an adverse effect on the research.

Some authors [87 126] suggest that potential health issues in community settings are often ignored or overlooked by researchers and participants alike: do the participants who are chosen or self-selected, collectively represent the interests of all levels of the community? Whose interests will prevail when values and expectations of the various participants (including funding agencies, political and academic institutions) come into conflict?

Several authors have identified potential conflicts encountered by participatory researchers in community or organizational settings: conflicts between personal ambition and advancement within the research or academic communities, and the lack of peer recognition for research work that does not meet 'scientific' criteria of rigor, validity, and reliability; loyalty conflicts between the demands and expectations of funding agencies or academic institutions, and those of the community; the requirement for emotional investment and energy in a research process, which by its very nature, is unpredictable, demanding, and long-term; and, pressures to act as political advocate for groups which may be marginalized and/or oppressed [45 85 86 87]

Such situations will sorely try the negotiating skills of the most committed group. Although often unavoidable, the effects of such situations can be mitigated by awareness from the outset of the research process of the possibility of unforeseen shifts in objectives, agendas and political allegiance. Most situations can be dealt with internally; however, including a trained mediator is sometimes useful in limiting the effect of disagreements and shifting agendas on the project itself. Sometimes, however, a participant may choose to withdraw; a community may decide not to continue its participation, and a project may be stopped for many reasons. It is worth noting that a salient ethical commitment is the right to withdraw from a research project at any time in the process. This right should also be extended to the academic partners who also have a considerable involvement in the research process. The process of collaborative research is dynamic [127], and the ethical agreements negotiated at the outset guide the participatory process throughout.

Various groups, including the CDC in Atlanta are currently addressing the issue of individual vs. collective consent [128,129,130]. Additional challenges exist when there is no obvious leadership structure within a community. Borkan131 recounts examples with non-union workers, and in Bedouin communities, where there are multiple and competing communal/modern/traditional/family structures. In the first instance he obtained consent from each individual, while in the latter he attempted without success to find recognized leaders and instead had to settle for individual consent.

A final caution: not every academic has the skills to collaborate successfully in community-based research; not every community is interested in academic-linked research; and a collaborative approach is not appropriate for every project.

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Examples of PR projects

There are many examples of participatory research in primary health care in the recent literature, including inner-city populations and marginalized groups [132, 133]; economically depressed communities [126]; consumer groups and organizations [85]; and seniors groups [45 134]. The range of examples is further illustrated by those cited below.

  1. The Boston Healthy Start Initiative [135]: This was a federally funded research project that used a community participation model to improve infant mortality rates of African American in the Boston area. Very specific outcomes were achieved from this PR project including a decrease in infant mortality rates in the African American community in Boston, and a demonstration that communities played a major role in redefining services and power relationships in health programs.
  2. The Wai'anae Cancer Research Project in Hawaii [22]: The key component of this cancer control research project was community participation in all phases of the project including grant proposal development through to data interpretation. The purpose of the project was to test the effectiveness of a culturally appropriate intervention as a means of increasing breast and cervical cancer screening practices among Native Hawaiian women. The results showed a community-wide impact on cancer-related knowledge, attitudes and behaviors, and economic benefits, increased research capabilities and improvements to health systems and services for the community.
  3. Nutrition education for low income, urban women in Halifax [120]: This case study analyzed how PR and community organization surrounding the problem of nutritional inequities was an empowering educational experience for a group of socially disadvantaged women. Participants gained knowledge and initiated collective action for social change toward nutritional inequities.
  4. The Motala Injury Prevention Program in Sweden [137]: This was an action research study that used a participatory model to gain a better understanding of community development for injury prevention. This project achieved sustained outcomes. A regular Safety Board for the Motala Municipality was formed and prevention activities in the community continued after the researchers withdrew from the project.
  5. Primary care health facilities planning in Soweto, South Africa [138]: A description of the participatory principles and methods used in developing a plan for primary level health facilities in Soweto is provided. Recommendations were developed through the involvement of all stakeholders in the whole research process.

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Measuring success

Participatory research is successful if all parties are satisfied with the utility of the process and the outcomes. This dynamic process involves individuals and institutions from a variety of backgrounds, with varying sets of values. The process of negotiation is not expected to be a smooth articulation of these agendas; rather, the measure of success is the level of satisfaction with the entire process and the outcomes of the research project. Satisfaction may entail acceptance of less than ideal circumstances, and extensive compromise. The highest levels of satisfaction will emerge from a research process that has included all partners to the extent that they want to participate, and which was negotiated with the agendas of each participant fully considered.[139].

The process of program evaluation is yet another opportunity for a participatory approach. Measures of success will vary with the stated objectives of the project and the long-range goals of the research partners. These may include the establishment of a continuing research partnership on individual and/or institutional levels which addresses further shared research interests and projects. Another measure of success might be community take-over and perpetuation of the research process. Success for participatory research projects will be measured at the individual, the community and the institutional levels, by criteria established jointly and separately by the participants.

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