"I miss work:" employment experiences and attitudes of adults with acquired disabilities who use assistive technologies.

PURPOSE: This study explored employment experiences and attitudes of adults who acquired mobility, motor, and/or communication disabilities and who use assistive technologies. MATERIALS AND METHODS: Semi-structured interviews were conducted with seven adults about their employment experiences after acquiring their disabilities. After analysis of interview results, six participants completed surveys about their attitudes towards crowdsourcing and remote work. RESULTS: Findings indicate that adults can continue working with accommodations when they feel supported and valued by their employer. However, participants frequently compared their pre-disability work performance with their post-disability performance and at times, left work because they did not feel they were performing to their own expectations, regardless of the support of their employer. Participants experienced feelings of loss, regret, and identity change after acquiring their disabilities and after leaving work. Most participants did not have specific knowledge of available work alternatives which could accommodate their health and accessibility needs. When presented with accessible work alternatives, the majority of participants increased their interest in learning more about those options. CONCLUSIONS: Whether through work or other pursuits, individuals in this population retain a strong desire to participate and contribute to society. However, it should not be assumed that adults with acquired disabilities are inherently aware of available, alternative options to traditional work. Future research on increasing awareness of accessible options for societal engagement for this population should be explored.

Clinicians should not assume that clients are aware of the available range of work accommodations and alternatives.Clinicians should share a variety of accessible, computer-based, flexible work alternatives with clients, including volunteer and active leisure activities.Rehabilitation for adults with acquired disabilities should include addressing a change in identity, particularly when it comes to identity associated with contributing to society.

Maybe they had a bad day: how LGBTQ and BIPOC patients react to bias in healthcare and struggle to speak out.

OBJECTIVE: People who experience marginalization, including Black, Indigenous, People of Color (BIPOC) and Lesbian, Gay, Bisexual, Transgender, Queer, Plus (ie, all other marginalized genders and sexual orientations) people (LGBTQ+) experience discrimination during healthcare interactions, which negatively impacts patient-provider communication and care. Yet, scarce research examines the lived experience of unfair treatment among patients from marginalized groups to guide patient-centered tools that improve healthcare equity. MATERIALS AND METHODS: We interviewed 25 BIPOC and/or LGBTQ+ people about their experiences of unfair treatment and discrimination when visiting healthcare providers. Through thematic analysis, we describe participants' immediate reactions and longer-term consequences of those experiences. RESULTS: We identified 4 ways that participants reacted to discrimination in the moment: Fighting, Fleeing, Excusing, and Working Around Bias. Long-term consequences reflect 6 ways they coped: Delaying or Avoiding Care, Changing Healthcare Providers, Self-prescribing, Covering Behaviors, Experiencing Health Complications, and Mistrusting Healthcare Institutions. DISCUSSION: By describing how patients react to experiences of unfair treatment and discrimination, our findings enhance the understanding of health disparities as patients cope and struggle to speak out.To combat these problems, we identify 3 future directions for informatics interventions that improve provider behavior, support patient advocacy, and address power dynamics in healthcare. CONCLUSIONS: BIPOC and LGBTQ+ patients' perspectives on navigating unfair treatment and discrimination in healthcare offers critical insight into their experiences and long-term consequences of those experiences. Understanding the circumstances and consequences of unfair treatment, discrimination, and the impact of bias through this patient-centered lens is crucial to inform informatics technologies that promote health equity.

Battling Bias in Primary Care Encounters: Informatics Designs to Support Clinicians.

Although clinical training in implicit bias is essential for healthcare equity, major gaps remain both for effective educational strategies and for tools to help identify implicit bias. To understand the perspectives of clinicians on the design of these needed strategies and tools, we conducted 21 semi-structured interviews with primary care clinicians about their perspectives and design recommendations for tools to improve patient-centered communication and to help mitigate implicit bias. Participants generated three types of solutions to improve communication and raise awareness of implicit bias: digital nudges, guided reflection, and data-driven feedback. Given the nuance of implicit bias communication feedback, these findings illustrate innovative design directions for communication training strategies that clinicians may find acceptable. Improving communication skills through individual feedback designed by clinicians for clinicians has the potential to improve healthcare equity.

Telehealth experiences of providers and patients who use augmentative and alternative communication.

OBJECTIVE: We explore the telehealth experiences of adults who use augmentative and alternative communication (AAC) and clinicians who work with people using AAC. MATERIALS AND METHODS: We conducted semistructured, online interviews with 6 adults who use AAC and 8 clinicians who provide telehealth services to people who use AAC between July and September 2020. Participants were located in the United States and the United Kingdom. All participants had engaged in 2 or more telehealth visits in the past 6 months. We used an inductive, thematic approach to analyze the interview data. RESULTS: Our findings reveal that (1) telehealth is an essential service, (2) technology causes barriers, (3) policies meant to protect actually inhibit, and (4) remote monitoring devices have the potential to mitigate risks. DISCUSSION: Telehealth systems created for persons without disabilities do not provide equitable access to everyone. Telehealth should be flexible enough to allow patients to use the communication modality that best meets their needs. We suggest that healthcare systems think of the healthcare ecosystem as one which includes a variety of telehealth options in addition to traditional in-person clinical visits. CONCLUSIONS: The benefits of telehealth for people who use AAC are substantial and should be an option for ongoing health care. However, the accessibility of telehealth technologies needs to be improved. Designers should view telehealth as part of a broad healthcare ecosystem, which includes in-person, telehealth, and remote health monitoring technologies. Designers should also include AAC users in the design and development process. Telehealth policies should encourage multimodality access to health care and address funding concerns.

Children's Designs for the Future of Telehealth.

Telehealth has increased dramatically with COVID-19. However, current telehealth systems are designed for able-bodied adults, rather than for pediatric populations or for people with disabilities. Using a design scenario of a child with a communication disability who needs to access telehealth services, we explore children's ideas of the future of telehealth technology. We analyzed designs generated by six children and found three provocative over-arching design themes. The designs highlight how improving accessibility, accommodating communication preferences, and incorporating home based sensor technologies have the potential to improve telehealth for both pediatric patients and their physicians. We discuss how these themes can be incorporated into practical telehealth designs to serve a variety of patient populations-including adults, children, and people with disabilities.

Broken down by bias: Healthcare biases experienced by BIPOC and LGBTQ+ patients.

Bias toward historically marginalized patients affects patient-provider interactions and can lead to lower quality of care and poor health outcomes for patients who are Black, Indigenous, People of Color (BIPOC) and Lesbian, Gay, Bisexual, Transgender and Gender Diverse (LGBTQ+). We gathered experiences with biased healthcare interactions and suggested solutions from 25 BIPOC and LGBTQ+ people. Through qualitative thematic analysis of interviews, we identified ten themes. Eight themes reflect the experience of bias: Transactional Care, Power Inequity, Communication Casualties, Bias-Embedded Medicine, System-level problems, Bigotry in Disguise, Fight or Flight, and The Aftermath. The remaining two themes reflect strategies for improving those experiences: Solutions and Good Experiences. Characterizing these themes and their interconnections is crucial to design effective informatics solutions that can address biases operating in clinical interactions with BIPOC and LGBTQ+ patients, improve the quality of patient-provider interactions, and ultimately promote health equity.

"Eavesdropping": An Information Source for Inpatients.

Healthcare providers in the hospital setting must discuss patient information to ensure continuity of care and patient safety. This study explores how patients perceive the information they hear discussed between healthcare providers and how the concept of "eavesdropping" can be addressed by healthcare providers and in the field of medical informatics. Using an inductive analysis of interviews with 14 adult inpatients, research findings indicate that patients value receiving information in the hospital setting, including information received through eavesdropping. Patient eavesdropping opportunities include "eavesdropping by design" events, such as during bedside shift changes and handoffs, as well as unintended "unintended eavesdropping" events, such as listening to healthcare provider conversations outside of the patient's room. Healthcare providers and medical informaticists have opportunities to address eavesdropping in the inpatient setting. Informatics systems that address "eavesdropping by design" and "unintended eavesdropping opportunities" can improve patient-provider communication and satisfy patient preferences for receiving medical information.

Designing Inpatient Portals to Support Patient Agency and Dynamic Hospital Experiences.

Inpatient portals could help patients engage in their hospital care, yet several design, usability, and adoption issues prevent this technology from fulfilling its potential. Despite patients having needs that extend beyond the scope of existing inpatient portals, we know less about how to design such portals that support them. To learn about effective designs, we created three mid-fidelity prototypes representing novel approaches for inpatient portal design. Then, we conducted interviews with 21 pediatric and adult inpatients to gather their feedback on these prototypes. Participants shared how the prototypes addressed the following needs: forming active partnerships, navigating relationships and power dynamics with clinicians, understanding complexity of care, contextualizing health information, increasing efficiency of communication, and preventing lost information. We discuss two key implications-supporting patients' agency and dynamic needs throughout their hospital care-for the future of inpatient portal designs.