Participatory curriculum development for health and independent living for disabled people: a qualitative study of participant experiences.

Participatory curriculum development is an approach that draws on participatory research philosophy by engaging members of intended audiences in the curriculum development process. This is a fairly new approach to curriculum development, which has seldom been applied in health promotion and, to our knowledge, has not previously been used to develop curriculum with disabled people. In this project, participatory curriculum development was used to both develop a new curriculum and revise an existing curriculum for in-person, web-based delivery. We engaged in this process with Center for Independent Living staff members, twelve of whom we interviewed post-engagement. We assessed the development process for equitable engagement and sharing of power and identified three relevant main themes: learning, collaborating, and empowering. Our project partners engaged collaboratively in project development and believed the curriculums would empower their intended end-users. However, they desired greater sharing of power during the process to create an equitable experience.

Why stay home? Temporal association of pain, fatigue and depression with being at home.

BACKGROUND: Community participation is important to most people with disabilities despite the fact that common secondary conditions like pain, fatigue and depression may increase the difficulty of leaving home. Despite decades of research on these secondary conditions, little is known about how they are associated with being at home. OBJECTIVE: We used Ecological Momentary Assessment data to examine within subject fluctuation in these secondary conditions to examine their effect on the likelihood that participants remain at or return home. METHODS: Participants (n = 139) were recruited from a population based sampling frame to complete an Ecological Momentary Assessment that queried their location and experience with secondary conditions six times a day for two weeks. RESULTS: Between subjects secondary condition ratings averaged across time periods indicated that pain and depression were associated with the share of measurement periods that respondents reported being at home. Within subject results indicated that a standard unit increase in pain, fatigue and depression was associated with being home one to two days later. Within day results indicated that increases in pain and fatigue were associated with increased likelihood of being home later, but increases in depression were associated with lower likelihood of being home later. CONCLUSION: These results suggest there may be a complicated relationship among these secondary conditions and community participation with effects observed both across and within days. One interpretation suggests that secondary condition severity is tempered by adjusting participation. These results may have implications for intervening on these secondary conditions.

An investigation into the temporal scaling of community participation measurement.

PURPOSE: Community participation remains fundamental to contemporary models of disability. However, the effect of temporal scaling on the measurement of participation has not been explored. This study examined the similarities and differences between two different temporal scales (i.e., seven-day recall vs. in situ) on participation measurement. RESEARCH METHOD: We collected seven-day retrospective recall data using a self-report paper-and-pencil measure (i.e., the Brief Community Engagement Questionnaire) from a community-based sample (N = 525) of individuals who endorsed one or more items of the American Community Survey disability screening questions. A subset of these participants (n = 148) completed an ancillary ecological momentary assessment (EMA) study, which involved repeated, in situ, daily measurements of participation for two weeks. Corresponding participation items from each method were compared. RESULTS: Survey and EMA participation data were relatively consistent over repeated measurements, suggesting reliability across methods and temporal scaling. Consistency across activities was most evident for major activities that tend to require regular behavior (e.g., work and volunteering). Conversely, lower base rate behavior demonstrated less stability regardless of temporal resolution. CONCLUSION: Understanding the implications of temporal resolution for participation measures is valuable for advancing ecological participation models. Future research is needed to develop consensus on participation measurement and provide a solid basis for developing ecological models of participation.