RESUMO
Although public engagement in research is increasingly popular, the involvement of citizens living in vulnerable circumstances is rarely realized. This narrative review aims to describe and critically analyse concerns and corresponding strategies, tools, and methods that could support the inclusion of these citizens in health research. The 40 studies that are included were thematically analysed using the socioecological model. Concerns originate most often on the intrapersonal level of the socioecological model, but concerns were also identified at institutional, community, and policy levels. It is thought-provoking that there is a lack of attention for the research and policy structure in which engagement practices are designed, implemented and evaluated. More research is needed to explore how these cultures could be changed in a way that promotes rather than restrains the engagement of citizens living in vulnerable circumstances in research and policymaking.
Unfortunately, citizens living in vulnerable circumstances are seldom engaged in research or policymaking. Think of, citizens living in poverty, those with an ethnic minority background or citizens with mental health issues are often excluded. Their involvement is, however, crucial to prevent growing (health) inequalities. To support the engagement of people living in vulnerable circumstances we conducted a literature review. We looked for strategies, tools, and methods that could support the inclusion of these citizens in research or policymaking. In total, 40 studies were identified and analysed. The main finding is that strategies tools, and methods are always context depended. Researchers should always ask: What works for whom in which context? We, therefore, stress the importance of close collaboration with experienced owners and community based organisations from the start. Also, more attention should be paid to how engagement practices are designed, implemented and evaluated. Think of, strict deadlines which limit the time to build trust. Or low budgets that limit the options to create the right preconditions, think of recruitment and data collection in multiple languages. To make sure that not only the 'usual suspects' but also citizens living in vulnerable circumstance will be engaged attention is needed from advocacy groups, research funders and researchers. All these actors need to reflect more often on the question what they can do to change the current research and policymaking culture in such a way that it will support the engagement of citizens living in vulnerable circumstances.
RESUMO
OBJECTIVE: To assess the reproducibility (reliability and inter-rater agreement) of the client-centred Canadian Occupational Performance Measure (COPM). DESIGN: The COPM was administered twice, with a mean interval of seven days (SD 1.6, range 4-14), by two different occupational therapists. Data analysis was based on intraclass correlation coefficients, the Bland and Altman method and Cohen's weighted kappas. SETTING: Occupational therapy departments of two university medical centres. SUBJECTS: Consecutive clients, with various diagnoses, newly referred to the outpatient clinic of two occupational therapy departments, were included. They were all over 18 years of age and perceived limitations in more than one activity of daily life. Complete data on 95 clients were obtained: 31 men and 64 women. RESULTS: Sixty-six per cent of the activities prioritized at the first assessment were also prioritized at the second assessment. The intraclass correlation coefficients were 0.67 (95% confidence interval (CI) 0.54-0.78) for the mean performance score and 0.69 (95% CI 0.56-0.79) for the mean satisfaction score. The limits of agreement were -2.5 to 2.4 for the mean performance score and -2.3 to 2.7 for the mean satisfaction score. For the separate prioritized problems, the weighted kappas ranged from 0.37 to 0.49. CONCLUSIONS: Inter-rater agreement of the prioritized problems was moderate. The reproducibility of the mean performance and satisfaction scores was moderate, but it was poor for the scores of the separate problems. Therefore, the mean scores should be used for individual assessment.