Reproductive Health in Women with Physical Disability: A Conceptual Framework for the Development of New Patient-Reported Outcome Measures.

Background: Barriers in the built environment, enduring stereotypes and biases, and limited disability competency of health care providers compromise access to and quality of reproductive health care for women with physical disabilities. One way to improve our understanding of critical factors that drive reproductive health inequity and its impact on access to care is to use patient-reported outcome measures (PROMs) that capture relevant and meaningful information about experience. In this study, we developed a conceptual framework as the foundation for relevant and clinically meaningful patient-reported outcome measures targeting the interface of disability and reproductive health. Materials and Methods: We conducted semistructured focus groups and interviews to assess women's experiences around their reproductive health and contextual factors related to disability. We used deductive and inductive qualitative coding approaches to develop the conceptual framework. Results: Eighty-one women between the ages of 16 and 50 with a self-reported physical disability, defined by an impairment of mobility, participated in 13 focus groups (N = 64) and 17 individual interviews. Five major themes characterized the conceptual framework that emerged-knowledge about reproductive health, communication about reproductive health, relationships, the reproductive health care environment, and self-advocacy/identity-all of which had some relationship with five major reproductive health issues-pregnancy and labor/delivery, periods and menstrual management, contraception, sexuality and sexual functioning, and pelvic examinations. Conclusions: This conceptual framework will serve as a foundation for PROM and guide intervention development to reduce reproductive health inequity and improve reproductive health outcomes of women with physical disabilities.

Strengthening community involvement in grant review: insights from the Community-University Research Partnership (CURES) pilot review process.

In 2007, the Michigan Institute for Clinical and Health Research (MICHR) at the University of Michigan received a Clinical and Translational Science Award (CTSA). Within MICHR, the Community Engagement (CE) program supports partnership efforts between researchers, practitioners, and community-based organizations in specific focal communities throughout Michigan. A key component of the CE program is the Community Engagement Coordinating Council, a group that provides input and guidance on program priorities, strategic planning, and reviews pilot funding proposals for community-academic partnerships. This paper will describe a unique MICHR pilot funding mechanism for Community-University Research Partnerships (CURES) with an emphasis on the ways that community partners are involved in the review process, as well as the benefits, challenges, and insights gained over 5 years of pilot review. There is a growing need for community involvement and expertise in review of funding proposals for community-engaged research at both institutional and federal levels. The CURES pilot review process is one example of an institutional effort to engage community partners in university funding decisions and has demonstrated clear benefit toward accomplishing the aims of the CTSA.

Using a participatory action strategic approach to enhance accessibility and participation in arts and cultural events: results of four focus groups.

BACKGROUND: Cultural events are abundant in a midwestern college town; however, individuals with disabilities have expressed concerns about their accessibility. Policymakers, business owners, and managers often ignore disability-related issues. Research shows accessibility is the main environmental barrier to participation in arts and cultural events. Individuals with disabilities are disconnected from managers of cultural organizations and city leaders. The lack of awareness about accessibility, including access to the built environment, impedes participation in cultural events in this college town. OBJECTIVES: To encourage the participation of people with disabilities in cultural events in a midwestern college town, a bold strategic project was initiated to conduct a community-based needs assessment as a foundation for an action plan. Participation in arts and culture was selected as a unique focal point for exploring ways to enhance accessibility. METHODS: Thirty-nine stakeholders participated in four different focus groups: individuals with disabilities, managers of cultural organizations, caregivers and health care providers, and other stakeholders including politicians. Critical problem areas identified were mapped onto the environmental factors in the International Classification of Functioning, Disability, and Health (ICF). RESULTS: Three themes emerged: 1) limited awareness about accessibility among the residents with disabilities and a lack of awareness about disability-related issues and accessibility among the managers of cultural organizations; 2) the need for a "central information clearinghouse" to share, provide, and retrieve information; 3) the need for inclusive city-level policies. CONCLUSIONS: Raising awareness about disabilities and accessibility, providing a clearinghouse for information sharing and implementing inclusive policies are crucial to strengthen participation in community life.