Caregiver and Health Care Provider Perspectives on Cloud-Based Shared Care Plans for Children With Medical Complexity

Desai, Arti D.; Jacob‐Files, Elizabeth; Wignall, Julia; Wang, Grace; Pratt, Wanda; Mangione-Smith, Rita; Britto, Maria T.

doi:10.1542/hpeds.2017-0242

Cited by 21 publications

(24 citation statements)

References 26 publications

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“…Some novel ideas that have been published include the feasibility of a cloud-based care plans for providers and families. Desai, et al found that providers were amenable to participating in these types of coordination [59] and this might be ideal for infants transitioning from several types of NICUs (community based, children's hospital, etc.) to a primary care provider.…”

Section: Discussionmentioning

confidence: 99%

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

et al. 2019

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Background: We have limited information on families' experiences during transition and after discharge from the neonatal intensive care unit. Methods: Open-ended semi-structured interviews were conducted with English or Spanish-speaking families enrolled in Medicaid in an urban high-risk infant follow up clinic at a safety-net center, which serves preterm and high-risk term infants. We generated salient themes using inductive-deductive thematic analysis. Results: Twenty-one participants completed the study. The infant's median (IQR) birth weight was 1750 (1305, 2641) grams; 71% were Hispanic and 10% were Black non-Hispanic; 62% reported living in a neighborhood with 3-4th quartile economic hardship. All were classified as having chronic disease per the Pediatric Medical Complexity Algorithm and 67% had medical complexity. A conceptual model was constructed and the analysis revealed major themes describing families' challenges and ideas to support transition centered on the parent-child role and parent self-efficacy. The challenges were: (1) comparison to normal babies, (2) caregiver mental health, (3) need for information. Ideas to support transition included, (1) support systems, (2) interventions using mobile health technology (3) improved communication to the primary care provider and (4) information regarding financial assistance programs. Specific subthemes differed in frequency counts between infants with and without medical complexity. Conclusions: Families often compare their preterm or high-risk infant to their peers and mothers feel great anxiety and stress. However, families often found hope and resilience in peer support and cited that in addition to information needs, interventions using mobile health technology and transition and financial systems could better support families after discharge.

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Section: Discussionmentioning

confidence: 99%

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

et al. 2019

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“…37,38 High degrees of usability and personalization are important for sustained engagement with apps that track chronic disease. 39,40 Desai et al 41 recently described design requirements for cloud-based shared care plans for CMC. Despite differences in scope, our studies have several similarities, including the need for cloud-based accessibility, alerts, collaboration among multiple users, and tailoring to the specific user.…”

Section: Discussionmentioning

confidence: 99%

Codesign and Usability Testing of a Mobile Application to Support Family-Delivered Enteral Tube Care

Cheng

Werner

Doutcheva

et al. 2020

Hospital Pediatrics

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BACKGROUND: Enteral tubes are prevalent among children with medical complexity (CMC), and complications can lead to costly health care use. Our objective was to design and test the usability of a mobile application (app) to support family-delivered enteral tube care. METHODS:Human-centered design methods (affinity diagramming, persona development, and software development) were applied with family caregivers of CMC to develop a prototype. During 3 waves of usability testing with design refinement between waves, screen capture software collected user-app interactions and inductive content analysis of narrative feedback identified areas for design improvement. The National Aeronautics and Space Administration Task Load Index and the System Usability Scale quantified mental workload and ease of use. RESULTS:Design participants identified core app functions, including displaying care routines, reminders, tracking inventory and health data, caregiver communication, and troubleshooting. Usability testing participants were 80% non-Hispanic white, 28% lived in rural settings, and 20% had not completed high school. Median years providing enteral care was 2 (range 1-14). Design iterations improved app function, simplification, and user experience. The mean System Usability Scale score was 76, indicating above-average usability. National Aeronautics and Space Administration Task Load Index revealed low mental demand, frustration, and effort. All 14 participants reported that they would recommend the app, and that the app would help with organization, communication, and caregiver transitions. CONCLUSIONS:Using a human-centered codesign process, we created a highly usable mobile application to support enteral tube caregiving at home. Future work involves evaluating the feasibility of longitudinal use and effectiveness in improving self-efficacy and reduce device complications.

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“…However, studies exploring the use of LCPs by families and providers who care for CMC highlight several limitations in their implementation that diminish their accessibility, their trustworthiness to provide accurate information, and their utility as a care coordination tool. 8,[10][11][12] Existing LCPs are typically printed on paper or scanned into the electronic health record (EHR) by an individual provider or provider team, restricting editing capability of other providers within the or-ganization. 10,13 Some EHR-embedded LCPs may allow providers from a single organization to comanage care plan content; however, this excludes a multitude of providers who care for CMC outside of the organization from contributing or updating content.…”

Section: Background and Significancementioning

confidence: 99%

“…8,[10][11][12] Existing LCPs are typically printed on paper or scanned into the electronic health record (EHR) by an individual provider or provider team, restricting editing capability of other providers within the or-ganization. 10,13 Some EHR-embedded LCPs may allow providers from a single organization to comanage care plan content; however, this excludes a multitude of providers who care for CMC outside of the organization from contributing or updating content. 10,14 Most importantly, printed, scanned, or EHR-embedded LCPs do not allow caregivers, who are integral members of the care team, to comanage their child's health information even though they have the most updated information about the child's day-to-day care.…”

Section: Background and Significancementioning

confidence: 99%

An implementation model for managing cloud-based longitudinal care plans for children with medical complexity

Wang

Wignall

Kinard

et al. 2020

Journal of the American Medical Informatics Association

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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.

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Caregiver and Health Care Provider Perspectives on Cloud-Based Shared Care Plans for Children With Medical Complexity

Abstract: Although further studies are needed to understand the optimal design and implementation strategies, shared care plans that meet these specified requirements could mitigate perceived information barriers and improve care for CMC.

Cited by 21 publications

References 26 publications

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

Codesign and Usability Testing of a Mobile Application to Support Family-Delivered Enteral Tube Care

An implementation model for managing cloud-based longitudinal care plans for children with medical complexity

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