Swimming Upstream: Taking Risks as a Woman Living with TBI.

In 1980, I (JPR) acquired a traumatic brain injury (TBI) from a bludgeoning that killed my fiancé and left me with disabilities. Following months of rehab therapies, I became dependent on my parents. My rehab team, parents, and I agreed that my primary goals were regaining my independence and pre-injury quality of life. My former employer welcomed me back, and my providers and family urged me to return to that company. They feared that I might never receive another comparable opportunity and could become permanently unemployed, lacking expert guidance to prevent failure. But I refused to take their advice. I was steadfast in my decision to seek out a new career in a nonprofit agency and avoid spiraling into a depression that could forever make me dependent on family or warehoused in a facility. I found myself alone, on an uncertain path to becoming a professional woman living with new cognitive and physical limitations and PTSD. In this essay, I explore what taking this risk of unemployment meant to me, my rationale for the risk, the hurdles I faced, and how I overcame them to create a personal and professional life that surpassed the quality of my pre-injury life.

Inside an Occupational Therapy-Disability Community Partnership to Promote Health Management: Ethnography of a Research Collaboration.

IMPORTANCE: Disability studies-informed occupational therapy is predicated on full and equal partnerships among occupational therapy practitioners, researchers, and disability communities. Community-based participatory research (CBPR) is an approach to research that aligns with this vision yet is not without challenges. Understanding the tensions that arise from stakeholders' perspectives and priorities is critical for promoting collaboration between occupational therapy professionals and disability community partners. OBJECTIVE: To understand the group dynamics and relational processes of a CPBR team in the context of an intervention development study focused on health management for people with disabilities (PWD). DESIGN: This 9-mo ethnographic study included semistructured interviews and participant observation. Data were analyzed thematically. SETTING: Community-based multiagency collaborative. PARTICIPANTS: Nine participants (6 academic team members, 4 of whom were trained as occupational therapists; 2 disability partners; and 1 managed-care organization representative) took part. Three participants self-identified as PWD. FINDINGS: CBPR processes, although productive, were fraught with challenges. Team members navigated competing priorities, varying power dynamics, and multifaceted roles and identities. Flexibility was needed to address diverse priorities, respond to unexpected challenges, and facilitate the project's success. CONCLUSIONS AND RELEVANCE: Deep commitment to a shared goal of health care justice for PWD and team members' willingness to address tensions promoted successful collaboration. Intentional relationship building is needed for occupational therapy researchers to collaborate with members of disability communities as equal partners. What This Article Adds: Disability studies-informed occupational therapy research demands that team members intentionally nurture equitable relationships through shared governance, clear communication, and recognition of the fluid nature of power dynamics.

WeCanConnect: Development of a Community-Informed mHealth Tool for People with Disabilities and Cancer.

BACKGROUND: Cancer care for people with disabilities (PWD) is rife with uncertainty and obstacles. Not only do PWD have to contend with cancer and treatment-related sequelae, but also its impact on disabling conditions and functional capacity, as well as a health care system lacking accessibility and disability competence. Peer support can address important needs for emotional and informational support. mHealth tools for smart phones, tablets, or laptops hold promise to deliver such support in an accessible and scalable manner. This concept is unexplored for use among PWD with cancer. OBJECTIVES: To describe a community-based participatory study that 1) identifies consumer-reported support needs and priorities among PWD and cancer and 2) integrates consumer perspectives into the design of an mHealth cancer support tool to address these needs and priorities. METHODS: Part 1 is a thematic analysis of semistructured, qualitative interviews with a purposive sample of experts in health and cancer care for PWD (n = 7) and a convenience sample of cancer survivors with preexisting disabilities (n = 9). In part 2, results were integrated to develop an mHealth peer support tool to addresses identified needs. RESULTS: Themes included 1) barriers across the cancer care continuum, 2) strengths within the disability community, and 3) recommendations for mHealth and peer support. Based on the qualitative findings, we designed a mHealth tool for peer support and information sharing among PWD with cancer. CONCLUSION: Consumer-informed mHealth tools hold great potential to leverage strengths in the disability community to address emotional and informational needs created by a lack of disability competence across the cancer care continuum.

ScreenABLE: Breast Cancer Screening among Women with Disabilities from Community Identified Challenges to Community-Based Programs.

BACKGROUND: Women with disabilities are an unrecognized cancer disparities population who experience well-documented barriers to breast cancer screening. There is a critical need for targeted, community-directed programing to address these disparities. OBJECTIVES: To describe the trajectory of a long-term community-academic partnership aimed at understanding and addressing breast cancer screening disparities among women with disabilities. METHODS: Phase 1 was a thematic qualitative focus group study (n = 40) with women with physical disabilities to understand their breast cancer screening experiences. Phase 2 was the application of an equity-focused knowledge translation (KT) process that brought together breast cancer survivors with disabilities and graduate applied health students in KT collaboratives to create innovative, evidence-informed knowledge products. Phase 3 included the development of community-based programming. RESULTS: In phase 1, women with disabilities identified provider and patient barriers to breast cancer screening, including a lack of provider knowledge and respect for individuals with disabilities, lack of accessibility, the history of stigma and mistreatment within the health care setting, and treatment fatigue. In phase 2, KT collaboratives created the short film "ScreenABLE" to educate providers and community members about physical and attitudinal barriers to cancer screening. In phase 3, community, academic, and clinical partners collaborated to create ScreenABLE Saturday, a wellness fair and free accessible mammograms, for women with disabilities with programming developed to directly address cancer screening barriers identified from the phase 1 research. CONCLUSIONS: Long-term sustained partnerships between academic, disability, and clinical partners are needed to address the complex issues that perpetuate breast cancer screening disparities among women with disabilities.

Breast cancer screening in women with cerebral palsy: Could care delivery be improved?

BACKGROUND: Women with disabilities (WWD) have reported lower mammography rates than the general population, however rates for women with cerebral palsy (CP) have not been specifically studied. OBJECTIVE: To evaluate mammography rates in women with CP and to identify strengths and barriers with their screening experience. METHODS: Women with CP 40 years or older (n = 118) participating in a prospective cross-sectional survey were queried regarding screening status, imaging modality, and accommodation needs and availability. Categorical variables were summarized and Chi-square testing used to assess factors contributing to screening compliance. The effect of functional factors on screening was evaluated using logistic regression. RESULTS: 77 women (65.3%) had mammograms within the past two years; 56 (47.5%) were screening mammograms. Severity of fine motor deficits was associated with lack of screening (OR 0.559, p = 0.019). 85 (72.0%) experienced positive staff attitudes. Facilities most often met needs for ramps, elevators, and/or wide doorways (92.9%), exam explanations (84.4%), and accessible parking (82.5%). Needs least often met included accommodations for standing (59.3%) or for difficulties with arm/shoulder positioning (57.1%), and wheelchair-accessible mammogram machines (59.1%). CONCLUSIONS: The screening compliance rate for women with CP is low, although the 2-year mammography rate is comparable to that reported for WWD and the general female U.S. POPULATION: Women were usually offered respectful care. Adequate physical accommodations during the procedure were reported less often than overall facility environmental accommodations. These findings demonstrate the need for improved screening rates in women with CP, and highlight areas for improving their screening experience.