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Personal Outcomes in Community-based Participatory Research Partnerships: A Cross-site Mixed Methods Study.

ABSTRACT: Community-based participatory research (CBPR) has been embraced by diverse populations to address health inequities within their communities. CBPR has been shown to produce favorable health outcomes, but little is known about personal outcomes (e.g., individual growth and capacities) resulting from the direct involvement in a CBPR partnership. We empirically examine which CBPR partnerships' processes and practices are associated with personal outcomes. We hypothesize that higher levels of collaborative approaches and adherence to CBPR principles and practices would be associated with personal outcomes. Based on a national cross-site CBPR study, Research for Improved Health, we utilized mixed-method data from a comprehensive community-engagement survey (N = 450) and seven in-depth case studies to explore the hypothesized relationships. Our multivariate mixed-effects model revealed the importance of various partnering practices. Relationship dynamics emerged as key predictors including the following: respect in the partnership, voice and influence in decision-making among partners, and stewardship. Qualitative findings highlighted individual, partnership, and community-level impacts, within and beyond the partnership. Our findings have implications for CBPR best practices and highlight the potential role of personal outcomes for partnerships' sustainability, long-term outcomes, and health equity research.

SUBMITTER: Rodriguez Espinosa P

PROVIDER: S-EPMC7772261 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:OBJECTIVE:To determine the feasibility of a Community-Based Participatory Tobacco Dependence Strategy (PROMPT) in the inner city population of Ottawa (Canada). DESIGN:A feasibility mixed methods prospective cohort study following principles of community-based participatory action research. INTERVENTION:Recruited 80 people whouse drugs, followed them for 6?months while providing access to counselling, nicotine replacement therapy and peer-support in a community setting. SETTING:Community research office in downtown Ottawa, adjacent to low-income housing, shelter services and street-based drug consumption. PRIMARY OUTCOME:Retention rate at 6-month follow-up. SECONDARY OUTCOME:Biochemically validated 7-day point prevalence smoking abstinence at 26 weeks, self-reported abstinence in the past 7 days with exhaled carbon monoxide ?10?ppm. RESULTS:The average age of participants was 43.8 years. The 6-month follow-up rate was 42.5%. The mean number of smoking years reported was 27.3 years. The participants were 70% male, 33.7% reported less than a high-school education, 21% identified as indigenous and 43.8% reported an income between US$1000 and US$1999 per month. The baseline mean daily cigarette use was 20.5 and 9.3 cigarettes at study end, with mean reduction of 11.2 cigarettes at 6?months (P=0.0001). There was a considerable reduction in self-reported illicit substance use (18.8%), including a reduction in the opioids heroin (6.3%), fentanyl (2.6%) and Oxycontin (3.8%). The study findings also reveal psycho-socioeconomic benefits such as improved health, return to work and greater community engagement. CONCLUSIONS:The PROMPT project describes socioeconomic variables associated with tobacco and polysubstance use. A programme focused on tobacco dependence, easily accessible in the community and led by community peers with lived experience is feasible to implement and has the potential to support positive life changes. PROMPT's patient engagement model is an effective harm-reduction strategy for the growing opioid use crisis and can improve the health outcomes of marginalised at-risk populations worldwide.

Project description:BackgroundCystic fibrosis (CF) is a rare, life-shortening, multiorgan disease, the treatment of which has seen significant increases in the life expectancy of those with CF. Many advances in CF care are thanks to the dedicated and active participation of people with CF as research participants. Unfortunately, most CF research teams still do not fully partner with people with CF or their caregivers.ObjectiveThe aim of this study was to determine the interest, knowledge gaps, and desired format for patient-centered outcomes research (PCOR) training in the CF community.MethodsWe surveyed patients, caregivers, researchers, research staff, and diverse health care providers via list servers and social media outreach about their knowledge of, experience with, and preferences for PCOR training components. We followed the survey with 3 small-group discussion sessions with 22 participants who completed the survey to establish consensus and prioritize key learning components of a PCOR training program. We summarized results using descriptive statistics.ResultsA total of 170 participants completed the survey (patients/caregivers: 96/170, 56.5%; researchers/health care providers: 74/170, 43.5%). Among providers, 26% (19/74) were physicians/advanced practice providers, 20% (15/74) were nurses, and 54% (40/74) were from other disciplines. Among all participants, 86.5% (147/170) expressed interest in learning about PCOR, although training topics and training format differed between the patient/caregiver and researcher/health care provider groups. Before participating in PCOR, patients/caregivers wanted to understand more about expectations of them as partners on PCOR research teams (82/96, 85%). Meanwhile, researchers/health care providers desired information on how to include outcomes important to patients/caregivers (55/74, 74%) and the quality and impact of PCOR research (52/74, 70% and 51/74, 69%, respectively). Patients/caregivers were most interested in learning about the time commitment as a PCOR team member (75/96, 78%). Researchers/health care providers wanted to receive training about how to establish trust (47/74, 64%) and maintain confidentiality (47/74, 64%) when including patient or caregiver partners on the PCOR team. During follow-up discussions, participants emphasized the importance of addressing the traditional patient/caregiver and researchers/health care provider hierarchy by teaching about transparency, appreciation, creating a common language between the groups, and providing specific training on "how" to do PCOR.ConclusionsOur findings suggest CF community members are interested in PCOR. A high-quality training program would fill a current deficit in methodological research. This assessment identified the topics and formats desired and can be used to develop targeted training to enhance meaningful PCOR in CF.

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Personal Outcomes in Community-based Participatory Research Partnerships: A Cross-site Mixed Methods Study.

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