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1.
Telemed J E Health ; 2024 Apr 10.
Artículo en Inglés | MEDLINE | ID: mdl-38597959

RESUMEN

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.

2.
Telemed J E Health ; 30(2): 595-600, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37624647

RESUMEN

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.


Asunto(s)
Medicina , Consulta Remota , Personas Transgénero , Humanos , Adolescente , Niño , Derivación y Consulta , Encuestas y Cuestionarios , Atención Primaria de Salud
3.
Pediatrics ; 152(4)2023 10 01.
Artículo en Inglés | MEDLINE | ID: mdl-37697934

RESUMEN

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.


Asunto(s)
Cuidadores , Personas Transgénero , Adolescente , Masculino , Humanos , Niño , Femenino , Escolaridad , Comunicación , Atención Primaria de Salud
4.
Disabil Rehabil Assist Technol ; : 1-10, 2023 Jun 30.
Artículo en Inglés | MEDLINE | ID: mdl-37390848

RESUMEN

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.

5.
J Adolesc Health ; 73(2): 367-374, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37294258

RESUMEN

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.


Asunto(s)
Instituciones de Atención Ambulatoria , Personas Transgénero , Humanos , Adolescente , Niño , Correo Electrónico , Estado de Salud , Salud Mental
6.
JMIR Pediatr Parent ; 6: e42378, 2023 Feb 14.
Artículo en Inglés | MEDLINE | ID: mdl-36745775

RESUMEN

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.

7.
JMIR Hum Factors ; 10: e39118, 2023 Jan 31.
Artículo en Inglés | MEDLINE | ID: mdl-36719714

RESUMEN

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.

8.
AMIA Annu Symp Proc ; 2023: 774-783, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38222327

RESUMEN

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.


Asunto(s)
Sesgo Implícito , Minorías Sexuales y de Género , Femenino , Humanos , Atención a la Salud , Conducta Sexual , Identidad de Género
9.
J Am Med Inform Assoc ; 29(12): 2075-2082, 2022 11 14.
Artículo en Inglés | MEDLINE | ID: mdl-35985279

RESUMEN

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.


Asunto(s)
Disparidades en Atención de Salud , Minorías Sexuales y de Género , Humanos , Femenino , Masculino , Promoción de la Salud , Identidad de Género , Conducta Sexual
10.
Pediatr Transplant ; 26(7): e14343, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-35863916

RESUMEN

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.


Asunto(s)
Trasplante de Riñón , Cuidadores , Niño , Emociones , Humanos , Riñón , Trasplante de Riñón/psicología , Receptores de Trasplantes/psicología
11.
Artículo en Inglés | MEDLINE | ID: mdl-35615338

RESUMEN

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.

13.
J Am Med Inform Assoc ; 29(2): 257-270, 2022 01 12.
Artículo en Inglés | MEDLINE | ID: mdl-34741511

RESUMEN

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.


Asunto(s)
Microagresión , Medios de Comunicación Sociales , Atención a la Salud , Femenino , Instituciones de Salud , Humanos , Masculino , Salud de la Mujer
14.
J Am Med Inform Assoc ; 29(3): 481-488, 2022 01 29.
Artículo en Inglés | MEDLINE | ID: mdl-34897460

RESUMEN

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.


Asunto(s)
Personas con Discapacidad , Telemedicina , Adulto , Comunicación , Atención a la Salud , Ecosistema , Humanos , Estados Unidos
15.
AMIA Annu Symp Proc ; 2021: 207-216, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-35308905

RESUMEN

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.


Asunto(s)
COVID-19 , Personas con Discapacidad , Telemedicina , Adulto , Niño , Humanos
16.
AMIA Annu Symp Proc ; 2021: 275-284, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-35308990

RESUMEN

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.


Asunto(s)
Promoción de la Salud , Minorías Sexuales y de Género , Sesgo , Femenino , Disparidades en Atención de Salud , Humanos , Conducta Sexual
17.
J Am Med Inform Assoc ; 28(2): 222-231, 2021 02 15.
Artículo en Inglés | MEDLINE | ID: mdl-33150394

RESUMEN

OBJECTIVE: Team situational awareness helps to ensure high-quality care and prevent errors in the complex hospital environment. Although extensive work has examined factors that contribute to breakdowns in situational awareness among clinicians, patients' and caregivers' roles have been neglected. To address this gap, we studied team-based situational awareness from the perspective of patients and their caregivers. MATERIALS AND METHODS: We utilized a mixed-methods approach, including card sorting and semi-structured interviews with hospitalized patients and their caregivers at a pediatric hospital and an adult hospital. We analyzed the results utilizing the situational awareness (SA) theoretical framework, which identifies 3 distinct stages: (1) perception of a signal, (2) comprehension of what the signal means, and (3) projection of what will happen as a result of the signal. RESULTS: A total of 28 patients and 19 caregivers across the 2 sites participated in the study. Our analysis uncovered how team SA helps patients and caregivers ensure that their values are heard, their autonomy is supported, and their clinical outcomes are the best possible. In addition, our participants described both barriers-such as challenges with communication-and enablers to facilitating shared SA in the hospital. DISCUSSION: Patients and caregivers possess critical knowledge, expertise, and values required to ensure successful and accurate team SA. Therefore, hospitals need to incorporate tools that facilitate patients and caregivers as key team members for effective SA. CONCLUSIONS: Elevating patients and caregivers from passive recipients to equal contributors and members of the healthcare team will improve SA and ensure the best possible outcomes.


Asunto(s)
Concienciación , Cuidadores , Pacientes Internos , Grupo de Atención al Paciente , Participación del Paciente , Relaciones Profesional-Paciente , Adolescente , Adulto , Niño , Comunicación , Femenino , Hospitales Pediátricos , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Personal de Hospital , Relaciones Profesional-Familia , Centros de Atención Terciaria , Adulto Joven
18.
J Am Med Inform Assoc ; 28(1): 23-32, 2021 01 15.
Artículo en Inglés | MEDLINE | ID: mdl-33150404

RESUMEN

OBJECTIVE: We aimed to iteratively refine an implementation model for managing cloud-based longitudinal care plans (LCPs) for children with medical complexity (CMC). MATERIALS AND METHODS: We conducted iterative 1-on-1 design sessions with CMC caregivers (ie, parents/legal guardians) and providers between August 2017 and March 2019. During audio-recorded sessions, we asked participants to walk through role-specific scenarios of how they would create, review, and edit an LCP using a cloud-based prototype, which we concurrently developed. Between sessions, we reviewed audio recordings to identify strategies that would mitigate barriers that participants reported relating to 4 processes for managing LCPs: (1) taking ownership, (2) sharing, (3) reviewing, and (4) editing. Analysis informed iterative implementation model revisions. RESULTS: We conducted 30 design sessions, with 10 caregivers and 20 providers. Participants emphasized that cloud-based LCPs required a team of owners: the caregiver(s), a caregiver-designated clinician, and a care coordinator. Permission settings would need to include universal accessibility for emergency providers, team-level permission options, and some editing restrictions for caregivers. Notifications to review and edit the LCP should be sent to team members before and after clinic visits and after hospital encounters. Mitigating double documentation barriers would require alignment of data fields between the LCP and electronic health record to maximize interoperability. DISCUSSION: These findings provide a model for how we may leverage emerging Health Insurance Portability and Accountability Act-compliant cloud computing technologies to support families and providers in comanaging health information for CMC. CONCLUSIONS: Utilizing these management strategies when implementing cloud-based LCPs has the potential to improve team-based care across settings.


Asunto(s)
Nube Computacional , Planificación de Atención al Paciente , Grupo de Atención al Paciente , Adulto , Cuidadores , Niño , Enfermedad Crónica/terapia , Intercambio de Información en Salud , Health Insurance Portability and Accountability Act , Personal de Salud , Humanos , Planificación de Atención al Paciente/organización & administración , Pediatría , Estados Unidos
19.
J Am Med Inform Assoc ; 27(12): 1860-1870, 2020 12 09.
Artículo en Inglés | MEDLINE | ID: mdl-33043368

RESUMEN

OBJECTIVE: To determine the content priorities and design preferences for a longitudinal care plan (LCP) among caregivers and healthcare providers who care for children with medical complexity (CMC) in acute care settings. MATERIALS AND METHODS: We conducted iterative one-on-one design sessions with CMC caregivers (ie, parents/legal guardians) and providers from 5 groups: complex care, primary care, subspecialists, emergency care, and care coordinators. Audio-recorded sessions included content categorization activities, drawing exercises, and scenario-based testing of an electronic LCP prototype. We applied inductive content analysis of session materials to elicit content priorities and design preferences between sessions. Analysis informed iterative prototype revisions. RESULTS: We conducted 30 design sessions (10 with caregivers, 20 with providers). Caregivers expressed high within-group variability in their content priorities compared to provider groups. Emergency providers had the most unique content priorities among clinicians. We identified 6 key design preferences: a familiar yet customizable layout, a problem-based organization schema, linked content between sections, a table layout for most sections, a balance between unstructured and structured data fields, and use of family-centered terminology. DISCUSSION: Findings from this study will inform enhancements of electronic health record-embedded LCPs and the development of new LCP tools and applications. The design preferences we identified provide a framework for optimizing integration of family and provider content priorities while maintaining a user-tailored experience. CONCLUSION: Health information platforms that incorporate these design preferences into electronic LCPs will help meet the information needs of caregivers and providers caring for CMC in acute care settings.


Asunto(s)
Cuidadores , Enfermedad Crónica/terapia , Registros Electrónicos de Salud , Planificación de Atención al Paciente , Diseño Centrado en el Usuario , Interfaz Usuario-Computador , Niño , Personal de Salud , Humanos , Tutores Legales , Padres , Pediatría
20.
Comput Inform Nurs ; 38(12): 607-612, 2020 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-32568898

RESUMEN

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.


Asunto(s)
Comunicación , Continuidad de la Atención al Paciente , Personal de Salud/psicología , Pacientes Internos/psicología , Privacidad , Hospitales , Humanos , Seguridad del Paciente
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