ArticleJournal of the American Medical Informatics Association : JAMIA2020
User-centered design of a longitudinal care plan for children with medical complexity.
Article in Journal of the American Medical Informatics Association : JAMIA, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
15 citing papers in PubMed.
- Novel Web-Based Technology to Promote Goal-Setting in Complex Chronic Illness: Randomized Controlled Trial.JMIR human factors · 2026Trial
- Parental needs and experiences with e-Health applications in chronic pediatric care - a scoping review.BMC pediatrics · 2026Article
- Development of a digital tool to support overview in complex patient cases: Which information elements support the clinical workflow?BMC health services research · 2026Article
- Reflections in focus: a qualitative Photovoice-informed study on pediatric patient and caregiver hospital experiences.BMC pediatrics · 2026Article
- Article
- Development of an electronic system for self/proxy symptom tracking alongside children with cancer and their caregivers: a co-design exemplar.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- Caregivers' Experiences With a Web- and Mobile-Based Platform for Children With Medical Complexity and the Role of a Live Platform Coach: Thematic Analysis.JMIR pediatrics and parenting · 2023Article
- Feasibility Testing of Tubes@HOME: A Mobile Application to Support Family-Delivered Enteral Care.Hospital pediatrics · 2022Article
- The Development of an mHealth Tool for Children With Long-term Illness to Enable Person-Centered Communication: User-Centered Design Approach.JMIR pediatrics and parenting · 2022Article
- Using health information technology to support the needs of Children with Medical Complexity: Mapping review of consumer informatics applications.Frontiers in digital health · 2022Review
- "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.Frontiers in public health · 2022Article
- Article
- Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families.Children (Basel, Switzerland) · 2021Article
- 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.JMIR formative research · 2021Article
- How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome.Frontiers in psychiatry · 2021Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
objectiveTo 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
methodsWe 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.
resultsWe 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.
conclusionHealth 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.