Ethical Considerations for Research on Housing-Related Health Hazards Involving Children (2005) / Chapter Skim
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5 Community Involvement
5 Community Involvement
Pages 76-98
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From page 76... ...
ETHICAL FRAMEWORK The ethical principle of respect for persons incorporates both the notion that individuals should be treated as autonomous agents and that persons with diminished autonomy are entitled to protections. In the context of housing health hazards research, one can question whether the community environment compromises voluntariness of consent.
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From page 77... ...
The principle of justice is typically discussed in the context of equitable selection of participants, so that no group receives a disproportionate share of the benefits or burdens of research; it has generally received less attention than the other two ethical principles. However, it is particularly salient in the context of housing health hazards research.
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From page 78... ...
Community involvement, through enhancing respect for persons and shaping research that addresses the needs and priorities of the communities, is one way to address fundamental ethical principles. VALUE OF COMMUNITY INVOLVEMENT Involving a community in housing health hazards research, especially when the involvement is in the nature of partnerships, offers many advantages.
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From page 79... ...
The Centers for Disease Control and Prevention recommends that researchers apply and adapt with "understanding, skill, and sensitivity" concepts from literature on community participation, community mobilization, community empowerment, cultural influences, and others. Representative strategies to engage communities in research include capacity building, coalition building, and community organizing (Centers for Disease Control and Prevention, 1997c)
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From page 80... ...
. Several authors have enumerated key principles in community engagement as it relates to community based participatory research, one form of community involvement (see below)
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Researchers should also anticipate the questions likely to be raised by community residents (adapted from Center for Minority Health, 2004) : · What is/are the exact question(s)
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From page 82... ...
Greater involvement of community residents is associated with maximizing the potential for capacity building, salience of research questions and proposed solutions, and the relevance and sustainability of interventions (Hatch et al., 1993) ; see Box 5-2 for an example.
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From page 83... ...
. Community residents can be involved in the research process as research staff, through community consultation and review, membership on community advisory boards, and involvement in a communitybased participatory research process.
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From page 84... ...
By deliberately bringing together researchers and community residents in dialogue, community consultation allows everyone to be informed about the potential risks, burdens, and potential benefits of research to the group and may provide more meaningful input than merely hiring community residents as staff. Foster and colleagues (1999)
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From page 85... ...
. More formalized processes, though more involved, may address some of these concerns Community Advisory Boards Community advisory boards have been proposed as one mechanism for meaningful community input into the design of research projects (Quinn, 2004; Morin et al., 2003)
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From page 86... ...
Over the next year, outreach work ers made seven additional visits to provide education, social support, and resourc es to reduce exposure, and advocacy for improved housing conditions. The project steering committee included representatives from national and Community-Based Participatory Research Community-based participatory research is an intensive approach that allows communities affected by research to participate in all phases of the research process.
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From page 87... ...
. cluding cancer screening, international public health, nutrition, genetics, tobacco control, as well as research on housing health hazards (Viswanathan et al., 2004; Ammerman et al., 2003; Corbie-Smith et al., 2003; Israel et al., 2003; Lam et al., 2003; Lewis et al., 2004; Metzler et al., 2003; Minkler and Wallerstein, 2003; Naylor et al., 2002; Parker et al., 2003a; Riley et al., 2001; Sloane et al., 2003; Weijer and Emanuel, 2000; Mercer et al., 2004)
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From page 88... ...
In addition to the housing-based intervention, there was a complementary neighborhood intervention in which community orga nizers worked with community residents to reduce physical and psychosocial envi ronmental asthma stressors on a neighborhood level. Recruitment occurred in public schools, where screening questionnaires were sent to parents of children aged 6-10 to identify those with symptoms of asthma; 328 families agreed to par ticipate.
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From page 89... ...
The research and community partners of CAAA derived several lessons from each effort to adhere to the principles of community-based participatory research. For example, they found that: · time and support are needed in the early stages of the project in order to establish trust and jointly define priorities; · trust and positive working relationships need to be monitored and main tained, and decisions around governance and the decision-making structure need to be revisited throughout the project; · continuous process evaluation, including feedback, reflection, and action, is necessary; · the costs of participation must be considered and incorporated into the project budget; and · strategies to minimize those costs also have to be pursued.
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From page 90... ...
At the same time, community partners might be able to help the researchers understand why certain results have occurred. Community participation varied greatly across projects carried out through the Centers for Children's Environmental Health and Disease Prevention Research, all of which were required to incorporate a communitybased participatory research component (Israel et al., 2005)
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From page 91... ...
. Greater participation may help investigators to determine how best to understand, approach, and address housing health hazards in a particular community.
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From page 92... ...
. In the Cameron Park Project, for example, using community residents in both decision-making and implementation roles helped to bridge researcher and community cultures in order to overcome resident guardedness towards outsiders (May et al., 2003)
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From page 93... ...
Researchers on housing health hazards involving children must recognize that a community that appears homogeneous may actually be quite heterogeneous. For instance, residents of a low-income neighborhood may appear to be homogeneous -- for example, African American and Latino.
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From page 94... ...
To the extent that persons of higher educational and economic levels live in housing containing health hazards, it would be advisable for researchers to try to include such children as study subjects. The projects of the Centers for Children's Environmental Health and Disease Prevention Research took a variety of approaches to defining community.
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From page 95... ...
. Although the above analyses of the challenges in community involvement in research were based on genetics research, much of the analysis is pertinent to research on housing health hazards involving children.
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From page 96... ...
These kinds of discussions can be carried out in many ways, depending on the project, the community, and the relationship between the researchers and the community. However, the level of risk and the potential for direct benefit to the child subjects should be considered when determining how to involve the community, with projects that present more than minimal risk and no prospect of direct benefit expected to engage the community in a meaningful way, consistent with the principles of community-based participatory research (see Chapter 8 for a discussion of research that presents more than minimal risk and no prospect of direct benefit)
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From page 97... ...
. In several research projects on housing health hazards involving children, community participation has been incorporated in the planning, design, and implementation of the research project.
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From page 98... ...
As funders and researchers devote more attention to community involvement, the mechanisms and effective approaches to community involvement will become further refined. Recommendation 5.1: Researchers carrying out research on housing health hazards involving children should describe in their protocols and IRB submissions how they have involved and will continue to involve the affected community in the research project, justify the lack of such involvement, and report how they have responded to any community concerns.
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