Instructing to Impact: Exploration of Doctor of Physical Therapy Education Instruction of Social Determinants of Health and Health Equity for People with Disabilities.

OBJECTIVE: The aim of this study was to explore instruction of social determinants of health (SDOH) for people with disabilities (PWD) in Doctor of Physical Therapy (DPT) education programs. METHODS: A sequential mixed methods study informed by a 5-member disability community advisory panel was conducted. Qualitative semi-structured interviews with educators (n = 10) across 4 DPT programs in the Midwest were conducted and analyzed thematically. The qualitative findings formed the basis of the quantitative phase. An online survey was conducted with faculty of DPT programs in the United States (n = 254) with the most knowledge of instruction of SDOH and health equity for PWD (n = 74; 29% response rate). Quantitative data were analyzed with descriptive statistics and triangulated with qualitative data. RESULTS: SDOH for PWD is an emerging component of instruction in DPT curricula. Five themes included: emerging instruction of SDOH for PWD; conceptual frameworks informing instruction; instructional strategies; barriers to integration of SDOH for PWD; and facilitators to integration of SDOH for PWD. Quantitative analysis revealed that 71 respondents (95.9%) included disability in health equity discussions primarily focused on health care access. Limited time (n = 49; 66.2%) was the most frequently reported barrier, and educator interest in disability health equity was the most frequently reported facilitator (n = 62; 83.7%) to inclusion of the SDOH for PWD in health equity discussions. CONCLUSION: Opportunities exist in DPT curricula to build on instructional strategies, integrate SDOH frameworks, and amplify facilitators to integration of SDOH for PWD. IMPACT: To meet the needs of the 67 million Americans living with disabilities, students must have the knowledge and skills to address the complex needs of this historically marginalized population. Understanding the DPT education landscape around SDOH for PWD can guide DPT educators to more fully prepare their students to recognize and ameliorate health disparities faced by PWD.

Evaluating the Usability of an mHealth App for Empowering Cancer Survivors With Disabilities: Heuristic Evaluation and Usability Testing.

BACKGROUND: More than 18 million cancer survivors are living in the United States. The effects of cancer and its treatments can have cognitive, psychological, physical, and social consequences that many survivors find incredibly disabling. Posttreatment support is often unavailable or underused, especially for survivors living with disabilities. This leaves them to deal with new obstacles and struggles on their own, oftentimes feeling lost during this transition. Mobile health (mHealth) interventions have been shown to effectively aid cancer survivors in dealing with many of the aftereffects of cancer and its treatments; these interventions hold immense potential for survivors living with disabilities. We developed a prototype for WeCanManage, an mHealth-delivered self-management intervention to empower cancer survivors living with disabilities through problem-solving, mindfulness, and self-advocacy training. OBJECTIVE: Our study conducted a heuristic evaluation of the WeCanManage high-fidelity prototype and assessed its usability among cancer survivors with known disabilities. METHODS: We evaluated the prototype using Nielsen's 10 principles of heuristic evaluation with 22 human-computer interaction university students. On the basis of the heuristic evaluation findings, we modified the prototype and conducted usability testing on 10 cancer survivors with a variety of known disabilities, examining effectiveness, efficiency, usability, and satisfaction, including a completion of the modified System Usability Scale (SUS). RESULTS: The findings from the heuristic evaluation were mostly favorable, highlighting the need for a help guide, addressing accessibility concerns, and enhancing the navigation experience. After usability testing, the average SUS score was 81, indicating a good-excellent design. The participants in the usability testing sample expressed positive reactions toward the app's design, educational content and videos, and the available means of connecting with others. They identified areas for improvement, such as improving accessibility, simplifying navigation within the community forums, and providing a more convenient method to access the help guide. CONCLUSIONS: Overall, usability testing showed positive results for the design of WeCanManage. The course content and features helped participants feel heard, understood, and less alone.

Does the Canadian Occupational Performance Measure (COPM) Capture the Complex Experiences of Cancer Survivors? A Mixed Methods Approach.

Occupational therapy practitioners are uniquely positioned to address the needs of cancer survivors. This study aimed to understand the complex needs of survivors using The Canadian Occupational Performance Measure and in-depth interviewing. A convergent, mixed methods approach was utilized with a purposive sample of 30 cancer survivors. The results indicate that while the COPM can be a practical tool to address basic occupational performance problems, the in-depth interviews exposed these challenges are intricately connected to identity, relationships, and roles. Implications for occupational therapy practitioners include a critical approach to evaluation and interventions to capture the complex needs of survivors.

Relationships at Work: Integrating the Perspectives of Disability Partners to Enhance a Peer Navigation Intervention.

Objective: The Our Peers-Empowerment and Navigational Support (OP-ENS) community-based participatory research study developed, implemented, and evaluated a peer navigator intervention aimed at improving health and healthcare access among Medicaid beneficiaries with disabilities. Peer navigators are community partners with physical disabilities trained to deliver structured peer support interventions that can address barriers to care. The purpose of this paper is two-fold. First, it explicates the relational work the peer navigators do with peers in delivering the intervention. Second, it illustrates how our community-based participatory approach empowered peer navigators to share their knowledge to refine the intervention. Methods: Clinical coordinator team meeting notes, critical incident documentation reports, peer navigator reflections (n = 20) were analyzed thematically to understand the peer navigators' relational work and intervention refinements. Following Labov's 6-stage approach to personal narratives and a collaborative writing process academic, clinical, and disability partners co-wrote descriptive exemplars to showcase these processes. Findings: Through the manualized OP-ENS intervention process, peer navigators helped peers achieve incremental successes. Peer navigators used their training and personal experiences to engage with peers and forge deep connections and relationships of trust. As a result, peers identified a wide-range of social health concerns, including poverty, social isolation, and racial and disability related discrimination that might otherwise go unaddressed. True to the principles of community-based participatory research, by fostering an equity-focused collaboration and listening to peer navigators, the project team implemented subtle but salient refinements to the intervention. Refinements included an explicit focus on social determinants of health affecting peers' health and wellbeing and supplemental trainings to help peer navigators support peers with significant mental health needs. Conclusion: The peer navigators were intentional and skilled at relationship building, thus complex elements which impact peers' health were addressed. Peer navigators were empowered to communicate their perspectives with the study team, who worked together to strengthen the intervention processes and infrastructure. This atmosphere of trust and collaboration amongst diverse stakeholders was instrumental to OP-ENS' successful implementation. Healthcare systems should consider implementing peer support interventions that are responsive to consumer input to address social determinants of health for persons with disabilities.

Developing an mHealth App for Empowering Cancer Survivors With Disabilities: Co-design Study.

BACKGROUND: The transition from active treatment to long-term cancer survivorship leaves the needs of many cancer survivors unaddressed as they struggle with physical, cognitive, psychological, and social consequences of cancer and its treatment. The lack of guidance after treatment has forced cancer survivors to manage long-term effects on their own, which has an impact on their overall health, quality of life, and social participation. Mobile health (mHealth) interventions can be used to promote self-management and evidence-informed education. OBJECTIVE: This study aims to design an mHealth app for cancer survivors with disabilities that will offer interventions to improve their quality of life and increase their self-efficacy to manage cancer as a chronic condition. METHODS: We organized 3 co-design workshops with cancer survivors (n=5). These workshops included persona development based on data from 25 interviews with cancer survivors with disabilities; prototype ideation, where we sketched ideas for the prototype; and prototype development, where participants critiqued, and suggested improvements for, the wireframes. RESULTS: These workshops helped us to define the challenges that cancer survivors with disabilities face as well as important considerations when designing an mHealth app for cancer survivors with disabilities, such as the need for including flexibility, engagement, socialization, and a minimalistic design. We also outline guidelines for other researchers to follow when planning their own co-design workshops, which include allowing more time for discussion among participants, having small participant groups, keeping workshops engaging and inclusive, and letting participants dream big. CONCLUSIONS: Using a co-design process aided us in developing a prototype of an mHealth app for cancer survivors with disabilities as well as a list of guidelines that other researchers can use to develop their own co-design workshops and design their app. Furthermore, working together with cancer survivors ensured that the design team had a deeper sense of empathy toward the target users and kept the focus on our ultimate goal: creating something that cancer survivors would want to use and benefit from. Future work will include usability testing of a high-fidelity prototype based on the results of these workshops.

Cancer Survivors' Disability Experiences and Identities: A Qualitative Exploration to Advance Cancer Equity.

Eliminating cancer-related disparities is a global public health priority. Approximately 40% of cancer survivors experience long-term effects of cancer which can lead to activity limitations and participation restrictions; yet discussions of disability are largely absent from clinical and research cancer health equity agendas. The purpose of this study was to explore how cancer survivors experience and make sense of the long-term disabling effects of cancer and its treatments. In this qualitative study, data were collected via in-depth semi-structured interviews with survivors of breast cancer, head and neck cancer, and sarcoma (n = 30). Data were analyzed thematically using a 2-phase iterative process proceeding from descriptive to conceptual coding. Survivors experienced a wide range of long-term physical, sensory, cognitive, and emotional effects, that intertwined to restrict their participation in self-care, work, leisure, and social roles. While the interaction between impairments and participation restrictions meets the definition of disability; participants articulated a range of responses when asked about their disability identity, including (1) rejecting, (2) othering, (3) acknowledging, and (4) affirming. Findings may be indicative of structural and internalized ableism which can impede cancer care and survivorship. To support cancer survivors' transition to post-treatment life, cancer care providers should implement anti-ableist practices and engage in frank discussions about cancer's long-term impacts.

Peer Support Interventions in Physical Medicine and Rehabilitation: A Framework to Advance the Field.

Peer support is a central tenet of the Disability Rights Movement and is based on the recognition that experiential knowledge and shared experiences provide opportunities for informational, emotional, and appraisal support among people with physical disabilities. "Peer support interventions" is an umbrella term used to describe a range of ancillary services provided by people with disabilities to people with disabilities, including peer mentoring, peer health education, and peer health navigation. A growing body of research documents the development, implementation, and outcomes of peer support interventions for people with physical disabilities in physical medicine and rehabilitation. The organization, structure, and objectives of peer support interventions vary tremendously, making it difficult to synthesize findings across studies and establish best practices to support their systematic implementation across the continuum of care. This article is a call to action for greater conceptual clarity in how peer support interventions are developed, implemented, and evaluated. We propose a 9-part evidence-informed framework delineating both theory-driven and contextual considerations to help strengthen the evidence base of peer support interventions for people with disabilities in physical medicine and rehabilitation.

NCS Assessments of the Motor, Sensory, and Physical Health Domains.

As part of the National Children's Study (NCS) comprehensive and longitudinal assessment of the health status of the whole child, scientific teams were convened to recommend assessment measures for the NCS. This manuscript documents the work of three scientific teams who focused on the motor, sensory, or the physical health aspects of this assessment. Each domain team offered a value proposition for the importance of their domain to the health outcomes of the developing infant and child. Constructs within each domain were identified and measures of these constructs proposed. Where available extant assessments were identified. Those constructs that were in need of revised or new assessment instruments were identified and described. Recommendations also were made for the age when the assessments should take place.

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.

Prenatal genetic counselors' perceptions of the impact of abortion legislation on counseling and access in the United States.

Genetic counselors have an important role in offering and appropriate coordinating abortion services for patients identified with a fetal abnormality. Few studies have been conducted to determine the effects of legislation on genetic counselors and patients. This study aimed to further our understanding of genetic counselors' perception of the impact of abortion regulations on their practice, the perceived financial and emotional impact on their patients and their ability to access abortion. A 22-question survey was developed based on themes identified by a qualitative study (Koenig et al., 2019, Journal of Genetic Counseling, 28, 790-801), and distributed to members of the National Society of Genetic Counselors; data from 113 respondents are analyzed. For analysis, participants were categorized into three groups based on the restrictiveness of their state's abortion legislation (supportive, middle ground, hostile) using the Guttmacher Institute's designation based on the amount of restrictive abortion legislation in their state. Participants reported that legislative gestational age restrictions significantly impact their counseling and coordinating of abortion services. Participants reported emotional and financial burdens that impact their patients seeking abortion; however, those in hostile states were significantly more likely to report a perceived financial or emotional impact on their patients. Participants in hostile states were more likely than those in supportive states to report that many of the addressed legislative and institutional regulations impact patients' ability to access abortion. Abortion regulations limiting the decision-making time frame for patients with a fetal abnormality have a significant impact on the practice of prenatal genetic counseling. Further restrictions may change how genetic counselors choose to counsel their patients about the option of abortion, but also may limit the availability of choices particularly for patients in rural areas, in hostile states, and those without the financial resources to travel or pursue termination at later gestational ages.

Accessibility Considerations in the National Children's Study.

In the National Children's Study (NCS), assessments were proposed and developed that used a wide range of modes of administration (e.g., direct in-person interviews, telephone interviews, computer assisted interviews, self-administered questionnaires, real time and recall observations, and physical examinations). These modes of administration may pose accessibility challenges for some people with disabilities. Accessibility of measurement is important to consider because systematic exclusion of people with disabilities from research can lead to measurement bias and systematic error in derived scores. We describe our approach to analyzing the accessibility of measures in the NCS and describe the work of the Accessibility Domain Team. Finally, we describe a decision process for creating and using accessible health research measures.

Rasch Analysis of Social Attitude Barriers and Facilitators to Participation for Individuals with Disabilities.

OBJECTIVES: To develop item banks of social attitude barriers and facilitators to participation and validate them with established instruments. DESIGN: We used the Rasch model to identify misfitting items and rating scale problems, calibrate items, and develop KeyForms and short forms. Correlations between the Social Attitude Barriers and Facilitators item banks with the Patient-Reported Outcomes Measurement Information System (PROMIS) Social Health domain and National Institutes of Health Toolbox Emotional Battery Social Relationships domain were computed to evaluate convergent and divergent validity. SETTING: Community-dwelling individuals traveled to 3 academic medical centers for testing. PARTICIPANTS: Participants (N=558) who had a primary impairment of stroke, spinal cord injury, or traumatic brain injury (mean age, 47.0±16.0y) completed 31 social attitude facilitator and 51 barrier items using a 5-point rating scale. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Item banks to measure social attitude barriers and facilitators for individuals with disabilities. RESULTS: After combining the "never" and "rarely" rating scale categories, 30 Facilitator items fit the Rasch model and demonstrated person reliability of 0.93. After collapsing the "never" and "rarely" rating scale categories, 45 Barrier items fit the Rasch model and demonstrated person reliability of 0.95. Ceiling and floor effects were negligible for both item banks. Facilitators and Barriers item banks were negatively correlated, and these banks were moderately correlated with PROMIS and Toolbox measures, providing evidence of convergent and divergent validity. CONCLUSIONS: Findings support the reliability and validity of the Social Attitude Facilitators and Barriers item banks. These item banks allow investigators and clinicians to measure perceptions of social attitudes, providing information that can guide individual interventions to reduce barriers and promote facilitators. Moderate correlations between the Social Attitude banks and PROMIS and Toolbox variables provide support for the measurement and theory of environmental influences on social health and participation.

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.

Recruiting and Retaining People With Disabilities for Qualitative Health Research: Challenges and Solutions.

There are 56.7 million people with disabilities (PWD) living in the United States; yet, PWD are significantly underrepresented in health research. Even when researchers purposively seek to include PWD in studies, challenges emerge related to recruitment and retention, leading to inadequate representation and surface understandings of this population. This in turn contributes to the perpetuation of implicit and explicit health disparities that are already experienced by this population. Grounded within a qualitative, community-based participatory health research framework, we highlight challenges associated with recruiting and retaining PWD in health research, including a critical analysis of the research enterprise structure, how this disables accessible research practices for PWD, and leads to continued skepticism among PWD regarding the value of participating in research. Finally, we propose solutions to create and maintain a culture of access and inclusion as well as long-term collaborative and equity-focused partnerships.

Exploring prenatal genetic counselors' perceptions of abortion laws in restrictive states.

In many states, abortion laws are becoming increasingly restrictive. Prenatal genetic counselors often see patients after the diagnosis of a fetal abnormality or genetic disorder and discuss the option of termination of pregnancy. The purpose of this study was to understand prenatal genetic counselors' perspectives on how state abortion laws impact their practice. Qualitative semi-structured interviews were conducted with 16 prenatal genetic counselors in states with restrictive abortion laws who were recruited from the National Society of Genetic Counselors' online directory. Verbatim transcripts were analyzed thematically, yielding five themes: genetic counselors in this study described (a) how state laws restrict access to abortion; (b) how they navigate state laws and institutional policies regarding abortion; (c) how they tailor their professional practice in the context of state abortion laws; (d) how abortion laws burden patients; and (e) how they engage in forms of advocacy. Participants described the financial and emotional burden placed on their patients by state abortion laws and how the laws influence their patient interactions. As access to abortion becomes more restricted, it is important to be aware of how this will impact genetic counselors and their patients.

Preparedness and Mutuality Affect Quality of Life for Patients With Mechanical Circulatory Support and Their Caregivers.

BACKGROUND: Clinical and US regulatory guidelines for patients with mechanical circulatory support (MCS) require the identification of a caregiver to assist with MCS care. There is limited understanding of the impact of MCS caregiving on patients and caregivers. The purpose of this study was to examine how living with MCS affects the quality of life (QoL) of patients and their caregivers through the lens of preparedness and mutuality. METHODS AND RESULTS: The sample included 30 MCS patients and their caregivers. Semistructured qualitative interviews about factors contributing to QoL were conducted with patients and caregivers and analyzed using a 2-phase thematic process. Caregiving impacts QoL of MCS patients and their caregivers long term. When there was limited time to engage in decision-making about MCS implantation, people entered MCS caregiving relationships naive to its full demands. Although most people adjusted to the task demands, MCS caregiving had a significant impact, both positive and negative, on interpersonal relationships. We applied the concepts of preparedness and mutuality to help frame the understanding of the emergent themes of forced choice, adjustment, gratitude, relationship change, strain, and burden (both caregiver and patient perceived). Availability of networks of support was identified as a crucial resource. CONCLUSIONS: MCS caregiving affects QoL for both patients and caregivers. Specifically, preparedness, mutuality, and availability of supportive networks influence QoL of MCS patients and their caregivers. Caregiving relationships change over time. Long-term support by the MCS clinical team can help ensure that physical and emotional needs of MCS patients and caregivers are identified and addressed.

Our Peers-Empowerment and Navigational Support (OP-ENS): Development of a Peer Health Navigator Intervention to Support Medicaid Beneficiaries With Physical Disabilities.

People with disabilities (PWD) are a health disparities population who experience well-documented physical, structural, attitudinal, and financial barriers to health care. The disability rights community is deeply engaged in advocacy to promote health care justice for all PWD. As the community continues to work toward systems change, there is a critical need for community-directed interventions that ensure individuals with disabilities are able to access the health care services they need and are entitled to. Peer health navigator (PHN) programs have been shown to help people from diverse underserved communities break down barriers to health care. The PHN model has not been systematically adapted to meet the needs of PWD. In this article, we describe the collaborative process of developing Our Peers-Empowerment and Navigational Supports (OP-ENS), an evidence-informed PHN intervention for Medicaid beneficiaries with physical disabilities in Chicago, IL, USA. Our Peers-Empowerment and Navigational Supports is a 12-month community-based PHN intervention that pairs Medicaid beneficiaries with physical disabilities (peers) with disability PHNs who use a structured recursive process of barrier identification and asset mapping, goal setting, and action planning to help peers meet their health care needs. Our Peers-Empowerment and Navigational Supports was developed by a collaborative team that included disability rights leaders, representatives from a Medicaid managed care organization, and academic disability health care justice researchers. We highlight both the conceptual and empirical evidence that informed OP-ENS as well as the lessons learned that can assist future developers.