Table 1. Potential obstacles to conducting community-based participatory research.
| Potential obstacle to conducting CBPR | Suggestions for addressing obstacles |
|---|---|
| The true needs of the community are rarely known to researchers | Healthcare professionals could make efforts to get involved politically as patient advocates in Parkinson's policy (such as the Parkinson Action Network, in the USA) or, at the local level, with community organizations (i.e., local or national Parkinson Associations, disability-rights groups), volunteering time to serve on association boards and attending board functions to get to know the issues facing the Parkinson's disease community with translation of programs into policies |
| Healthcare professionals could make efforts to regularly attend Parkinson support group meetings, interact with support group leaders, patients, care-partners and their families. These social interactions can give academicians and clinicians a ground-zero view of the lives of people with PD from the perspectives of the patients and the care-partners own experiences. These are valuable opportunities for developing research partnerships that healthcare professionals and researchers might not otherwise have | |
| Researchers may be unaware of CBPR resources (e.g., funding mechanisms or people in their community currently conducting CBPR) | Contact community-based participatory researchers in your community by signing up to the CCPH blog and information on their website [109] |
| To obtain a list of federally funded North American community-based participatory research projects and principal investigators, the NIH maintains a search engine, the Research Portfolio Online Searching Tool [108]. Using keywords, ‘community-based participatory research’ or CBPR, current and past grant awards can be searched online | |
| Examples of federal and foundation supports for CBPR funding include: | |
| Communities are rarely aware of the research interests of researchers or of the research infrastructure that is available right in their own community | Solicit research ideas by organizing regular town hall meeting or focus groups attended by community leaders. These meetings and agendas should be cofacilitated by researchers and patients. These could aim to identify research topics and research questions of importance to the stakeholders |
| Develop interactive worldwide web sites or blogs and invite consumers and researchers to interact for the purpose of generating ideas for research | |
| CAB | A basic element of CBPR is the formation of a CAB comprised of community leaders, patients, patient advocates and other key stakeholders who provide leadership to the study. CABs could meet monthly throughout the year. For a synthesis of best practices of developing CABs in public health research settings, see the following citation [114] |
| Professionals use technical language (i.e., postural reflex impairment, dyskinesia etc.) or specialized phrasing (e.g., statistical power, external validity and sampling strategy). This may potentially disenfranchise consumers from partnering with researchers in the research process | In planning community-based participatory projects, it is important to provide consumer educational workshops on research methods (data collection, data analysis, data interpretation). While conducting these workshops for consumers (with intact CNSs) might be challenging enough, designing teaching and learning curricula for people with PD – who may have cognitive and communication impairments – adds further layers of complexity to teaching research skills. |
| A key element of a successful CBPR project is to capture the degree of shared decision making during the research project | Team meetings could be cofacilitated/cochaired by healthcare providers/researchers and patients; team meeting agendas can be developed with substantial input from nonresearchers, and at the end of each team meeting, anonymous questionnaires to determine team members' satisfaction with the amount and quality of participation could be administered |
| Meeting minutes should be kept and distributed to the group following the meetings. Team meetings could be audio taped or video taped and transcribed. The transcripts could be examined and analyzed for the level of participation using participatory codes | |
| Ensure that the CAB is comprised of mostly patients and community leader representatives. Ensure that the research team committee has consumer and community leader representation | |
CAB: Community advisory board; CBPR: Community-based participatory research; CCPH: Community-Campus for Health Partnership; PD: Parkinson's disease.