Feasibility of a Voice-Enabled Medical Diary App (SpeakHealth) for Caregivers of Children With Special Health Care Needs and Health Care Providers: Mixed Methods Study.

Children with special health care needs (CSHCN) require more than the usual care management and coordination efforts from caregivers and health care providers (HCPs). Health information and communication technologies can potentially facilitate these efforts to increase the quality of care received by CSHCN. In this study, we aim to assess the feasibility of a voice-enabled medical diary app (SpeakHealth) by investigating its potential use among caregivers and HCPs. Following a mixed methods approach, caregivers of CSHCN were interviewed (n=10) and surveyed (n=86) about their care management and communication technology use. Only interviewed participants were introduced to the SpeakHealth app prototype, and they tested the app during the interview session. In addition, we interviewed complex care HCPs (n=15) to understand their perception of the value of a home medical diary such as the SpeakHealth app. Quantitative data were analyzed using descriptive statistics and correlational analyses. Theoretical thematic analysis was used to analyze qualitative data. The survey results indicated a positive attitude toward voice-enabled technology and features; however, there was no strong correlation among the measured items. The caregivers identified communication, information sharing, tracking medication, and appointments as fairly and highly important features of the app. Qualitative analysis revealed the following two overarching themes: enablers and barriers in care communication and enablers and barriers in communication technologies. The subthemes included parent roles, care communication technologies, and challenges. HCPs found the SpeakHealth app to be a promising tool for timely information collection that could be available for sharing information with the health system. Overall, the findings demonstrated a variety of needs and challenges for caregivers of CSHCN and opportunities for voice-enabled, interactive medical diary apps in care management and coordination. Caregivers fundamentally look for better information sharing and communication with HCPs. Health care and communication technologies can potentially improve care communication and coordination in addressing the patient and caregiver needs. The perspectives of caregivers and providers suggested both benefits and challenges in using the SpeakHealth app for medical note-taking and tracking health events at home. Our findings could inform researchers and developers about the potential development and use of a voice-enabled medical diary app.

Sezgin E ，Noritz G ，Lin S ，Huang Y ... -  《-》

"Hey Siri, Help Me Take Care of My Child": A Feasibility Study With Caregivers of Children With Special Healthcare Needs Using Voice Interaction and Automatic Speech Recognition in Remote Care Management.

About 23% of households in the United States have at least one child who has special healthcare needs. As most care activities occur at home, there is often a disconnect and lack of communication between families, home care nurses, and healthcare providers. Digital health technologies may help bridge this gap. We conducted a pre-post study with a voice-enabled medical note taking (diary) app (SpeakHealth) in a real world setting with caregivers (parents, family members) of children with special healthcare needs (CSHCN) to understand feasibility of voice interaction and automatic speech recognition (ASR) for medical note taking at home. In total, 41 parents of CSHCN were recruited. Participants completed a pre-study survey collecting demographic details, technology and care management preferences. Out of 41, 24 participants completed the study, using the app for 2 weeks and completing an exit survey. The app facilitated caregiver note-taking using voice interaction and ASR. An exit survey was conducted to collect feedback on technology adoption and changes in technology preferences in care management. We assessed the feasibility of the app by descriptively analyzing survey responses and user data following the key focus areas of acceptability, demand, implementation and integration, adaptation and expansion. In addition, perceived effectiveness of the app was assessed by comparing perceived changes in mobile app preferences among participants. In addition, the voice data, notes, and transcriptions were descriptively analyzed for understanding the feasibility of the app. The majority of the recruited parents were 35-44 years old (22, 53.7%), part of a two-parent household (30, 73.2%), white (37, 90.2%), had more than one child (31, 75.6%), lived in Ohio (37, 90.2%), used mobile health apps, mobile note taking apps or calendar apps (28, 68.3%) and patient portal apps (22, 53.7%) to track symptoms and health events at home. Caregivers had experience with voice technology as well (32, 78%). Among those completed the post-study survey (in Likert Scale 1-5), ~80% of the caregivers agreed or strongly agreed that using the app would enhance their performance in completing tasks (perceived usefulness; mean = 3.4, SD = 0.8), the app is free of effort (perceived ease of use; mean = 3.2, SD = 0.9), and they would use the app in the future (behavioral intention; mean = 3.1, SD = 0.9). In total, 88 voice interactive patient notes were generated with the majority of the voice recordings being less than 20 s in length (66%). Most noted symptoms and conditions, medications, treatment and therapies, and patient behaviors. More than half of the caregivers reported that voice interaction with the app and using transcribed notes positively changed their preference of technology to use and methods for tracking symptoms and health events at home. Our findings suggested that voice interaction and ASR use in mobile apps are feasible and effective in keeping track of symptoms and health events at home. Future work is suggested toward using integrated and intelligent systems with voice interactions with broader populations.

Sezgin E ，Oiler B ，Abbott B ，Noritz G ，Huang Y ... -  《Frontiers in Public Health》

Exploring the Experiences of Family Caregivers of Children With Special Health Care Needs to Inform the Design of Digital Health Systems: Formative Qualitative Study.

Family caregivers of children with special health care needs (CSHCN) are responsible for managing and communicating information regarding their child's health in their homes. Although family caregivers currently capture information through nondigital methods, digital health care applications are a promising solution for supporting the standardization of information management in complex home care across their child's health care team. However, family caregivers continue to use paper-based methods where the adoption of digital health care tools is low. With the rise in home care for children with complex health care needs, it is important to understand the caregiving work domain to inform the design of technologies that support child safety in the home. The aim of this study is to explore how family caregivers navigate information management and communication in complex home care for CSHCN. This research is part of a broader study to explore caregivers' perspectives on integrating and designing digital health care tools for complex home care. The broader study included interviews and surveys about designing a voice user interface to support home care. This formative study explored semistructured interview data with family caregivers of CSHCN about their home care situations. Inductive thematic analysis was used to analyze the information management and communication processes. We collected data from 7 family caregivers in North America and identified 5 themes. First, family caregivers were continuously learning to provide care. They were also updating the caregiver team on their child's status and teaching caregivers about their care situation. As caregiving teams grew, they found themselves working on communicating with their children's educators. Beyond the scope of managing their child's health information, family caregivers also navigated bureaucratic processes for their child's home care. Family caregivers' experiences of caring for CSHCN differ contextually and evolve as their child's condition changes and they grow toward adulthood. Family caregivers recorded information using paper-based tools, which did not sufficiently support information management. They also experienced significant pressure in summarizing information and coordinating 2-way communication about the details of their child's health with caregivers. The design of digital health care systems and tools for complex home care may improve care coordination if they provide an intuitive method for information interaction and significant utility by delivering situation-specific insights and adapting to unique and dynamic home care environments. Although these findings provide a foundational understanding, there is an opportunity for further research to generalize the findings.

Tennant R ，Allana S ，Mercer K ，Burns CM ... -  《-》

Feasibility of Implementation of a Mobile Digital Personal Health Record to Coordinate Care for Children and Youth With Special Health Care Needs in Primary Care: Protocol for a Mixed Methods Study.

Electronic health record (EHR)-integrated digital personal health records (PHRs) via Fast Healthcare Interoperability Resources (FHIR) are promising digital health tools to support care coordination (CC) for children and youth with special health care needs but remain widely unadopted; as their adoption grows, mixed methods and implementation research could guide real-world implementation and evaluation. This study (1) evaluates the feasibility of an FHIR-enabled digital PHR app for CC for children and youth with special health care needs, (2) characterizes determinants of implementation, and (3) explores associations between adoption and patient- or family-reported outcomes. This nonrandomized, single-arm, prospective feasibility trial will test an FHIR-enabled digital PHR app's use among families of children and youth with special health care needs in primary care settings. Key app features are FHIR-enabled access to structured data from the child's medical record, families' abilities to longitudinally track patient- or family-centered care goals, and sharing progress toward care goals with the child's primary care provider via a clinician dashboard. We shall enroll 40 parents or caregivers of children and youth with special health care needs to use the app for 6 months. Inclusion criteria for children and youth with special health care needs are age 0-16 years; primary care at a participating site; complex needs benefiting from CC; high hospitalization risk in the next 6 months; English speaking; having requisite technology at home (internet access, Apple iOS mobile device); and an active web-based EHR patient portal account to which a parent or caregiver has full proxy access. Digital prescriptions will be used to disseminate study recruitment materials directly to eligible participants via their existing EHR patient portal accounts. We will apply an intervention mixed methods design to link quantitative and qualitative (semistructured interviews and family engagement panels with parents of children and youth with special health care needs) data and characterize implementation determinants. Two CC frameworks (Pediatric Care Coordination Framework; Patient-Centered Medical Home) and 2 evaluation frameworks (Consolidated Framework for Implementation Research; Technology Acceptance Model) provide theoretical foundations for this study. Participant recruitment began in fall 2022, before which we identified >300 potentially eligible patients in EHR data. A family engagement panel in fall 2021 generated formative feedback from family partners. Integrated analysis of pretrial quantitative and qualitative data informed family-centered enhancements to study procedures. Our findings will inform how to integrate an FHIR-enabled digital PHR app for children and youth with special health care needs into clinical care. Mixed methods and implementation research will help strengthen implementation in diverse clinical settings. The study is positioned to advance knowledge of how to use digital health innovations for improving care and outcomes for children and youth with special health care needs and their families. ClinicalTrials.gov NCT05513235; https://clinicaltrials.gov/study/NCT05513235. DERR1-10.2196/46847.

Ming DY ，Wong W ，Jones KA ，Antonelli RC ，Gujral N ，Gonzales S ，Rogers U ，Ratliff W ，Shah N ，King HA ... -  《JMIR Research Protocols》

A Medical Translation Assistant for Non-English-Speaking Caregivers of Children With Special Health Care Needs: Proposal for a Scalable and Interoperable Mobile App.

Communication and comprehension of medical information are known barriers in health communication and equity, especially for non-English-speaking caregivers of children with special health care needs. The objective of this proposal was to develop an interoperable and scalable medical translation app for non-English-speaking caregivers to facilitate the conversation between provider and caregiver/patient. We employed user-centered and participatory design methods to understand the problems and develop a solution by engaging the stakeholder team (including caregivers, physicians, researchers, clinical informaticists, nurses, developers, nutritionists, pharmacists, and interpreters) and non-English-speaking caregiver participants. Considering the lack of interpreter service accessibility and advancement in translation technology, our team will develop and test an integrated, multimodal (voice-interactive and text-based) patient portal communication and translation app to enable non-English-speaking caregivers to communicate with providers using their preferred languages. For this initial prototype, we will focus on the Spanish language and Spanish-speaking families to test technical feasibility and evaluate usability. Our proposal brings a unique perspective to medical translation and communication between caregiver and provider by (1) enabling voice entry and transcription in health care communications, (2) integrating with patient portals to facilitate caregiver and provider communications, and (3) adopting a translation verification model to improve accuracy of artificial intelligence-facilitated translations. Expected outcomes include improved health communications, literacy, and health equity. In addition, data points will be collected to improve autotranslation services in medical communications. We believe our proposed solution is affordable, interoperable, and scalable for health systems.

Sezgin E ，Noritz G ，Hoffman J ，Huang Y ... -  《-》