1. DISCUSSION AND CONCLUSIONS The academic partners have formed a partnership with a community of individuals with PD. This CBPR project has begun to improve this community’s quality of life by engaging members in an investigation of their needs and concerns regarding communication and swallowing, indentifying potential actions, and beginning to initiate these actions. It is important to recognize that CBPR is an iterative process and that this study is the beginning of a series of cycles. This type of research is a powerful tool for engaging individuals in the management and production of their own health care. Community-Based Participatory Research for Parkinson’s Disease: Engaging People in Care Management Chris Heyne, M.A., SLP, & Barbara Mathers-Schmidt, Ph.D., CCC-SLP Communication Sciences & Disorders Department Western Washington University, Bellingham WA RESULTS The group decided to continue to meet regularly, with each meeting including three components: Time dedicated to supporting each other by sharing experiences and resources Time dedicated to a speaker/topic of interest Time to plan and implement future actions (e.g., discuss and arrange for speakers, prioritize actions, brainstorm steps to work towards actions, and consider resources) Other actions that have been implemented or considered include the following: Telling our stories via written narratives, video narratives, photo-voice Sharing ideas and strategies that work (within the group or as a community outreach endeavor) Learning more about PD related symptoms Seeking various types of support for communication partners Seeking various types of therapy Engaging in treatment efficacy research METHOD Participants/Community Partners Inclusionary Criteria: A verifiable diagnosis of PD with no other conditions (neurological, medical, or psychological) that may have accounted for or contributed to movement, communication, or swallowing disorders. Adequate hearing (aided or unaided) to allow participation in small group discussions in a quiet environment. See presenters for additional information re: participant demographics Study Design Phase One: Focus groups and semi-structured interviews identified needs and areas of concern. Focus group information was used to formulate semistructured interview prompts. Semi-structured interviews yielded information regarding the community partners’ experiences with PD. The academic partners performed a content analysis of this narrative data: Categorized data according to preset categories (based on interview questions). Identified themes that emerged through data examination; added categories accordingly Phase Two: Two additional focus groups were convened. Participants examined information from the semi-structured interviews. Participants developed plans for community-based action. ACTIONSCOMMUNITY-BASED PARTICIPATORY RESEARCH CBPR—a research paradigm: Engages targeted community members in identifying needs and concerns, developing action plans, and taking action (e.g., self-managing health, exercising, participating in communication disorder therapy, engaging in mentorship programs, and creating publications) to improve quality of life Informs researchers who are interested in advancing knowledge in a particular area Empowers stakeholders to participate in all aspects of medical research—the essence of CBRP (Hirsch, 2009) The W. K. Kellogg Foundation’s Community Health Scholars Program (2001) defined CBPR in the health field: “...a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with action and achieving social change to improve health outcomes and eliminate health disparities” (p. 2). Phase Three will include qualitative and quantitative research to investigate actions re: quality of life, communication effectiveness/participation, responsiveness to exercise, and patient activation. PURPOSE The purpose of the current study was to engage individuals with Parkinson’s Disease (PD) in research that would result in improved quality of life that is sustainable. We focused on collaborating with individuals with PD, and with their communication partners, across several iterative phases of ongoing research. We hypothesized that individuals with PD will benefit from group and individually-tailored action plans based on patient and communication-partner participation in a reiterative process of identifying and examining their experiences, concerns, and needs regarding communication and swallowing. Nine individuals in one room with one focus began a process of discovery that resulted in endless possibilities. We gratefully acknowledge the current members of our CBPR team: Karen Cook, Jeff Cotton, Christine Engelhardt, Sheila Hazel, Rick Hermann, Christina Heyne, Barbara Mathers-Schmidt, Joan Suhl, Dave Thomas, Jim Tolin