Guardian Reasons for Accessing Their Transgender and Gender-Diverse Adolescent's Patient Portal Account.

PURPOSE: To understand if and why guardians access their adolescent child's electronic health record patient portal account. METHODS: Guardians of transgender and gender-diverse adolescents completed a survey regarding patient portal use. Descriptive statistics were used to describe items related to guardian access to adolescent portal accounts. RESULTS: Of 82 respondents, 37.8% indicated they had used their child's login to access the patient portal. Most indicated they accessed their adolescent's account because their child asked them to do so. Other common reasons included being worried they might miss important health information and not realizing there was a difference between patient and proxy accounts. DISCUSSION: Results of this study provide a more detailed understanding regarding guardian access to adolescent patient portals. Findings can be used to inform adolescent patient portal design and enrollment practices that protect adolescent confidentiality.

Designing Communication Feedback Systems To Reduce Healthcare Providers' Implicit Biases In Patient Encounters.

Healthcare providers' implicit bias, based on patients' physical characteristics and perceived identities, negatively impacts healthcare access, care quality, and outcomes. Feedback tools are needed to help providers identify and learn from their biases. To incorporate providers' perspectives on the most effective ways to present such feedback, we conducted semi-structured design critique sessions with 24 primary care providers. We found that providers seek feedback designed with transparent metrics indicating the quality of their communication with a patient and trends in communication patterns across visits. Based on these metrics and trends, providers want this feedback presented in a dashboard paired with actionable, personalized tips about how to improve their communication behaviors. Our study provides new insights for interactive systems to help mitigate the impact of implicit biases in patient-provider communication. New systems that build upon these insights could support providers in making healthcare more equitable, particularly for patients from marginalized communities.

ConverSense: An Automated Approach to Assess Patient-Provider Interactions using Social Signals.

Patient-provider communication influences patient health outcomes, and analyzing such communication could help providers identify opportunities for improvement, leading to better care. Interpersonal communication can be assessed through "social-signals" expressed in non-verbal, vocal behaviors like interruptions, turn-taking, and pitch. To automate this assessment, we introduce a machine-learning pipeline that ingests audio-streams of conversations and tracks the magnitude of four social-signals: dominance, interactivity, engagement, and warmth. This pipeline is embedded into ConverSense, a web-application for providers to visualize their communication patterns, both within and across visits. Our user study with 5 clinicians and 10 patient visits demonstrates ConverSense's potential to provide feedback on communication challenges, as well as the need for this feedback to be contextualized within the specific underlying visit and patient interaction. Through this novel approach that uses data-driven self-reflection, ConverSense can help providers improve their communication with patients to deliver improved quality of care.

Caregiver perspectives on receiving gender-affirming care with their transgender and gender diverse adolescents via telemedicine.

Telemedicine may help improve access to gender-affirming care for transgender and gender diverse (TGD) adolescents. Parents or guardians (i.e., caregivers) of TGD adolescents play a critical role in supporting TGD adolescents in accessing this care. The purpose of this study was to explore caregivers' perspectives regarding their adolescent receiving pediatric gender-affirming care via telemedicine to help providers and health systems optimize this modality for future care delivery. Caregivers (n=18) of TGD adolescents ages 14-17 participated in semi-structured, individual interviews that were transcribed and analyzed qualitatively. Caregivers cited participating in visits from their home environment, decreased anxiety, COVID safety, ability to have more family members attend, no transportation demands, and effective delivery of care as advantages of telemedicine. Disadvantages included dysphoria or discomfort with self-image, impersonal provider-patient interactions, video teleconferencing fatigue, difficulty with portal navigation, connectivity issues, and lack of privacy. Caregivers largely deferred to their child's preference regarding the choice of visit modality, but many reported a preference for the first to be conducted in-person, and follow-up and less complex visits via telemedicine. Health systems should consider these perspectives as they adapt telemedicine infrastructure to better meet the needs of patients and their families.

Desire for Gender-Affirming Medical Care Before Age 18 in Transgender and Nonbinary Young Adults.

Purpose: We aimed to understand transgender and nonbinary (TNB) young adults' desire to receive gender-affirming medical care (GAMC) before age 18 and identify barriers and facilitators to receiving this care in adolescence. Methods: A cross-sectional survey was administered to TNB young adults presenting for care between ages 18 and 20 in 2023. Descriptive statistics characterized the sample, χ2 tests with post hoc pairwise comparisons identified differences in desire for gender-affirming medications, outness, and parental consent by gender identity and sex assigned at birth, and t-tests evaluated differences in barriers and facilitators to receiving care by outness to parents. Results: A total of 230 TNB respondents had complete data. Nearly all (94.3%) indicated they desired GAMC before age 18. Half (55.7%) of the respondents reported being out about their gender identity to a parent before age 18. Outness, discussing desire for GAMC, and asking for consent to receive GAMC from a parent were significantly more common among participants who identified as men compared to those who identified as women and among those assigned female at birth compared to those assigned male at birth. No such differences emerged when comparing nonbinary individuals to those who identified as men or women. Lack of parental willingness to consent for GAMC was cited as the primary contributor of not having received care in adolescence. Conclusions: Many TNB young adults desire GAMC in adolescence; however, lack of parental support is a key barrier to receiving this care, suggesting a need for more readily available resources for parents to support TNB adolescents.

Telemedicine-Based Provision of Adolescent Gender-Affirming Medical Care to Promote Equitable Access.

Purpose: To explore transgender and nonbinary (TNB) young adults' (1) interest in receiving gender-affirming medications through telemedicine before age 18 years and (2) willingness to initiate this care with primary care providers (PCPs). Methods: Data were from a survey of TNB young adults who had not received gender-affirming medications before age 18 years. Chi-square and Wald tests identified demographic differences in telemedicine interest and willingness to initiate medications with their PCP as minors. Results: Among 280 respondents, 82.5% indicated interest in telemedicine and 42.0% were willing to initiate medications with their PCP. Black/African American respondents were more likely to indicate interest in telemedicine than White and multiracial respondents. Respondents from rural areas were more likely to indicate willingness to initiate medications with their PCP than those from urban areas. Conclusions: Telemedicine expansion and further support for PCPs may represent critical opportunities to promote equitable access to adolescent gender-affirming care.

Evaluating an Electronic Consultation Platform to Support Pediatric Primary Care Providers in Caring for Transgender and Nonbinary Adolescents.

Background: An electronic consultation (e-consult) platform was implemented to support pediatric primary care providers (PCPs) in providing gender-affirming care to transgender and nonbinary (TNB) adolescents. Following implementation, a study was conducted to (1) explore how access to this e-consult platform impacts PCP confidence and referral patterns, (2) describe the content of questions, and (3) evaluate PCP's perspectives regarding platform usability. Methods: Following each submission, providers completed a 17-item survey. A total of 20 providers submitted 38 e-consults and 26 follow-up surveys between October 2021 and December 2022. Results: All PCPs reported a high overall value and increased confidence caring for TNB adolescents. Nearly one in five (19%) felt it allowed them to avoid submitting a specialty referral. Mean System Usability Scale score was 78.2 indicating good usability. Conclusion: This e-consult platform shows great promise in increasing PCP confidence providing gender-affirming care adolescents. More widespread utilization could help improve access to care and decrease specialty care referrals.

Adolescent and Caregiver Perspectives on Receiving Gender-Affirming Care in Primary Care.

BACKGROUND: Transgender and gender-diverse (TGD) adolescents experience barriers to receiving gender-affirming care. Delivering services in the pediatric primary care setting may help facilitate improved access. With this study, we aimed to explore TGD adolescents' and caregivers' experiences receiving primary care services and their perspectives regarding gender-affirming care delivery in pediatric primary care. METHODS: TGD adolescents aged 14 to 17 and caregivers of TGD adolescents currently receiving gender-affirming medical care participated in 1-hour-long, semi-structured, individual, virtual interviews. Each interview was recorded and transcribed. Transcripts were then individually coded, and themes were generated iteratively by using a reflexive thematic analysis framework. Recruitment of each group continued until thematic saturation was reached. RESULTS: A total of 33 participants (15 adolescents and 18 caregivers) completed interviews. Adolescent participants (mean age of 15.7 years) predominantly identified as transmasculine or trans male (73%), and caregiver participants were predominantly mothers (83.3%). Four themes were identified, which included (1) barriers, such as microaggressions and poor psychosocial support, (2) benefits, such as existing trusted relationships with primary care providers (PCPs) and convenience, (3) improvement strategies, such as training and interdisciplinary collaboration, and (4) opportunities for integrating primary care and specialty gender-affirming care. CONCLUSIONS: TGD adolescents and their caregivers reported previous negative interactions with PCPs; however, some desired to receive gender-affirming care in this setting, citing increased convenience, efficiency, and availability. Participants highlighted an ongoing need for further work to provide resources, education, and training to PCPs and their staff and improve PCP-to-specialist communication and collaboration.

"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.

Barriers Pediatric PCP's Identify To Providing Gender-Affirming Care For Adolescents.

PURPOSE: Both affirming environments and access to gender-affirming medical care have a positive impact on the mental health of transgender and gender diverse (TGD) youth, however, many TGD youth experience barriers in accessing this care. Pediatric primary care providers (PCPs) can play an important role in expanding access to gender-affirming care for TGD youth; however, few currently provide this care. The purpose of this study was to explore pediatric PCPs' perspectives regarding barriers they experience to providing gender-affirming care in the primary care setting. METHODS: Pediatric PCPs who had sought out support from the Seattle Children's Gender Clinic were recruited via email to participate in semistructured, one-hour Zoom interviews. All interviews were transcribed and then subsequently analyzed in Dedoose qualitative analysis software using a reflexive thematic analysis framework. RESULTS: Provider participants (n = 15) represented a wide range of experiences with respect to years in practice, number of TGD youth seen, and practice location (urban, rural, suburban). PCPs identified both health system and community-level barriers to providing gender-affirming care to TGD youth. Health system-level barriers included: (1) lack of foundational knowledge and skills, (2) limited clinical decision-making support, and (3) health system design limitations. Community-level barriers included (1) community and institutional biases, (2) provider attitudes regarding gender-affirming care provision, and (3) challenges identifying community resources to support TGD youth. DISCUSSION: A multitude of health system and community-level barriers must be overcome in the pediatric primary care setting to ensure that TGD youth receive timely, effective, and more equitable gender-affirming care.

Understanding Transgender and Gender-Diverse Youth's Experiences Receiving Care via Telemedicine: Qualitative Interview Study.

BACKGROUND: Access to virtual care has increased since the beginning of the COVID-19 pandemic, yet little is known about transgender and gender-diverse (TGD) youth's experiences and perspectives on receiving care via telemedicine. OBJECTIVE: The purpose of this study was to explore these experiences to (1) inform necessary changes to the provision of pediatric gender-affirming care and (2) help providers and health systems determine if and how telemedicine should be made available post pandemic. METHODS: Youth (aged 14-17 years) who completed a telemedicine visit in the Seattle Children's Gender Clinic were invited to participate in a semistructured interview exploring perceived advantages or disadvantages of telemedicine and preferred visit modalities. Interview transcriptions were analyzed by 2 research team members using an inductive thematic analysis framework. RESULTS: A total of 15 TGD youth completed an interview. Commonly cited advantages of telemedicine were convenience and comfort with having visits in their own environments. Reported disadvantages included technical issues, discomfort with the impersonal nature, lack of familiarity with the platform, and privacy concerns. Overall, slightly more youth preferred in-person visits over telemedicine, referencing both specific characteristics of the clinical visit (ie, initial vs return and complexity) and proximity to the clinic as reasons for this preference. Although a plurality of TGD youth preferred in-person visits, they also recognized the value of telemedicine and the impact it may have in facilitating access to care. CONCLUSIONS: Given the variations in needs and visit complexity, our study supports the provision of both in-person and telemedicine modalities as options for pediatric gender-affirming care.

Pediatric Primary Care Providers' Perspectives on Telehealth Platforms to Support Care for Transgender and Gender-Diverse Youths: Exploratory Qualitative Study.

BACKGROUND: Access to gender-affirming care services for transgender and gender-diverse youths is limited, in part because this care is currently provided primarily by specialists. Telehealth platforms that enable primary care providers (PCPs) to receive education from and consult specialists may help improve the access to such services. However, little is known about PCPs' preferences regarding receiving this support. OBJECTIVE: This study aimed to explore pediatric PCPs' perspectives regarding optimal ways to provide telehealth-based support to facilitate gender-affirming care provision in the primary care setting. METHODS: PCPs who had previously requested support from the Seattle Children's Gender Clinic were recruited to participate in semistructured, 1-hour web-based interviews. Overall, 3 specialist-to-PCP telehealth modalities (tele-education, electronic consultation, and telephonic consultation) were described, and the participants were invited to share their perspectives on the benefits and drawbacks of each modality, which modality would be the most effective, and the most important characteristics or outcomes of a successful platform. Interviews were transcribed and analyzed using a reflexive thematic analysis framework. RESULTS: The interviews were completed with 15 pediatric PCPs. The benefits of the tele-education platform were developing a network with other PCPs to facilitate shared learning, receiving comprehensive didactic and case-based education, having scheduled education sessions, and increasing provider confidence. The drawbacks were requiring a substantial time commitment and not allowing for real-time, patient-specific consultation. The benefits of the electronic consultation platform were convenient and efficient communication, documentation in the electronic health record, the ability to bill for provider time, and sufficient time to synthesize information. The drawbacks of this platform were electronic health record-related difficulties, text-based communication challenges, inability to receive an answer in real time, forced conversations with patients about billing, and limitations for providers who lack baseline knowledge. With respect to telephonic consultation, the benefits were having a dialogue with a specialist, receiving compensation for PCP's time, and helping with high acuity or complex cases. The drawbacks were challenges associated with using the phone for communication, the limited expertise of the responding providers, and the lack of utility for nonemergent issues. Regarding the most effective platform, the responses were mixed, with 27% (4/15) preferring the electronic consultation, 27% (4/15) preferring tele-education, 20% (3/15) preferring telephonic consultation, and the remaining 27% (4/15) suggesting a hybrid of the 3 models. CONCLUSIONS: A diverse suite of telehealth-based training and consultation services must be developed to meet the needs of PCPs with different levels of experience and training in gender-affirming care. Beyond the widely used telephonic consultation model, electronic consultation and tele-education may provide important alternative training and consultation opportunities to facilitate greater PCP independence and promote wider access to gender-affirming care.

Imagining Improved Interactions: Patients' Designs To Address Implicit Bias.

Implicit biases may negatively influence healthcare providers' behaviors toward patients from historically marginalized communities, impacting providers' communication style, clinical decision-making, and delivery of quality care. Existing interventions to mitigate negative experiences of implicit biases are primarily designed to increase recognition and management of stereotypes and prejudices through provider-facing tools and resources. However, there is a gap in understanding and designing interventions from patient perspectives. We conducted seven participatory co-design workshops with 32 Black, Indigenous, People of Color (BIPOC), Lesbian, Gay, Bisexual, Transgender, Queer/Questioning (LGBTQ+), and Queer, Transgender, Black, Indigenous, People of Color (QTBIPOC) individuals to design patient-centered interventions that help them address and recover from provider implicit biases in primary care. Participants designed four types of solutions: accountability measures, real-time correction, patient enablement tools, and provider resources. These informatics interventions extend the research on implicit biases in healthcare through inclusion of valuable, firsthand patient perspectives and experiences.

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.

My Kidney Identity: Contextualizing pediatric patients and their families kidney transplant journeys.

BACKGROUND: Even though having a kidney transplant is the treatment of choice for children with kidney failure, it can cause anxiety for patients and their families resulting in decreased psychosocial functioning, adherence, and self-management. We set out to identify the information needs required to help pediatric patients and their families contextualize their posttransplant experiences as they recalibrate their understanding of normalcy throughout their transplant journey. METHODS: Participants submitted photographs related to feeling: (1) worried, (2) confident, (3) similar to peers without kidney disease, and (4) different from these peers. The photographs served as a foundation for an in-depth interview. RESULTS: Nineteen individuals (10 pediatric transplant recipients and 9 caregivers) were interviewed at a mean of 8 years posttransplant. We identified five specific themes and tensions our participants associated with recalibrating their version of "normal" throughout the transplant journey: (1) exchanging information (information consumers vs. information contributors, (2) transitional management (family management vs. self-management), (3) building confidence (worry vs. confidence), (4) telling one's story (hiding vs. self-expression), and (5) normalizing kidney transplantation (feeling different vs. feeling similar). These five themes/tensions form one's Kidney Identity, shift from negative to positive throughout the transplant journey, illustrating a more abstract and complex account of kidney transplantation over time. CONCLUSIONS: Having a patient view their Kidney Identity over time may support self-reflection of one's progress posttransplant and potentially help clinicians, patients, and their caregivers identify barriers and areas where they may need more support to ensure their successful engagement in their care.

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.

Microaggression clues from social media: revealing and counteracting the suppression of women's health care.

OBJECTIVE: The purpose of this study was to demonstrate how analyzing social media posts can uncover microaggressions and generate new cultural insights. We explore why Korean women hesitate to seek recommended gynecological care and how microaggressions visible in social media reveal insights for counteracting such harmful messaging. MATERIALS AND METHODS: We scraped the posts and responses on social media related to unmarried women's uncomfortableness or unpleasantness in receiving gynecological care. We conducted content analyses of the posts and responses with the microaggression framework to identify both the types of microaggressions occurring within and outside the clinic as well as the responsible perpetrators. With an open-coding and subsequent deductive coding approach, we further investigated the socio-cultural context for receiving gynecological care as an unmarried woman in South Korea. RESULTS: Our analysis uncovered that mothers, male partners, and superficially supportive social media responders contribute to pre- and post-visit microaggressions toward unmarried women seeking gynecological care whereas healthcare providers contribute to only mid-visit microaggressions. We also exposed how social media was not only revealing but also reinforcing the suppression of women's health care. DISCUSSION: Mid-visit microaggressions are currently addressed by cultural competence education, but pre- and post-visit microaggressions are overlooked. We uncover the gaps in current practices of informatics and public health methods and suggest ways to counteract online and offline microaggressions. CONCLUSIONS: Social media provides valuable information about the cultural context of health care and should be used as a source of insights for targeted interventions to improve health care, in this case for unmarried Korean women.

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.