Using health information technology to support the needs of Children with Medical Complexity: Mapping review of consumer informatics applications
BackgroundChildren with medical complexity (CMC) are fragile populations that require continuous care and supervision. CMC family caregivers experience many challenges trying to address CMC patients' needs which puts these caregivers in a stressful situation that may negatively impact the care...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2022-12-01
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| Series: | Frontiers in Digital Health |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fdgth.2022.992838/full |
| _version_ | 1797978735133065216 |
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| author | Onur Asan Safa Elkefi Katharine N. Clouser Stephen Percy |
| author_facet | Onur Asan Safa Elkefi Katharine N. Clouser Stephen Percy |
| author_sort | Onur Asan |
| collection | DOAJ |
| description | BackgroundChildren with medical complexity (CMC) are fragile populations that require continuous care and supervision. CMC family caregivers experience many challenges trying to address CMC patients' needs which puts these caregivers in a stressful situation that may negatively impact the care of CMC patients. Consumer informatics might help these caregivers in coordinating care. However, few consumer informatics applications explicitly focus on supporting CMC caregivers' needs.ObjectiveThis systematic mapping literature review aims to provide an overview and a structured understanding of the consumer informatics designed for CMC and their caregivers.MethodsWe followed a systematic mapping literature review process to provide an overview of the existing Consumer Informatics literature for CMC, which is the scope of our study. We screened IEEE Xplore, Web of Science, and PubMed databases using a preset list of mesh terms that cover the use of medical informatics by children with medical complexities and their caregivers. The selected articles are peer-reviewed English publications that were empirically validated from January 2002 to January 2022. After selecting and filtering the articles, we analyzed them based on the preset mapping questions using the following criteria: publication year, publication source, research type, contribution type, empirical type, the need addressed, target audience, technology users, and consumer informatics' type.ResultsThe initial search resulted in a number of (N = 2,275) articles, and 17 selected publications were included. The results showed an increasing interest in CMC consumer informatics publications over time. Most of the studies were published in 2021, and feasibility research is the dominant research type. The most used technology was telehealth and telemedicine, followed by mobile health. The technologies addressed various needs, including; coordination & follow-up, medical safety, education & social support, daily living activities, shared decision making, information seeking, and emotional support. Most of the efforts were focused on ensuring good coordination and follow-up.ConclusionsCMC consumer informatics is a promising research field to present novel initiatives and approaches to manage the caregivers' workload. Future research should be shifted toward providing more evidence-based studies to examine the effectiveness of CMC consumer informatics solutions and identify the related challenges and limitations. |
| first_indexed | 2024-04-11T05:27:44Z |
| format | Article |
| id | doaj.art-fe28364dcb8849d9a11e9bde48995e4e |
| institution | Directory Open Access Journal |
| issn | 2673-253X |
| language | English |
| last_indexed | 2024-04-11T05:27:44Z |
| publishDate | 2022-12-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Digital Health |
| spelling | doaj.art-fe28364dcb8849d9a11e9bde48995e4e2022-12-23T05:15:43ZengFrontiers Media S.A.Frontiers in Digital Health2673-253X2022-12-01410.3389/fdgth.2022.992838992838Using health information technology to support the needs of Children with Medical Complexity: Mapping review of consumer informatics applicationsOnur Asan0Safa Elkefi1Katharine N. Clouser2Stephen Percy3School of Systems and Enterprises, Stevens Institute of Technology, Hoboken, NJ, United StatesSchool of Systems and Enterprises, Stevens Institute of Technology, Hoboken, NJ, United StatesDepartment of Pediatrics, Hackensack University Medical Center (HUMC), Hackensack, NJ, United StatesDepartment of Pediatrics, Hackensack University Medical Center (HUMC), Hackensack, NJ, United StatesBackgroundChildren with medical complexity (CMC) are fragile populations that require continuous care and supervision. CMC family caregivers experience many challenges trying to address CMC patients' needs which puts these caregivers in a stressful situation that may negatively impact the care of CMC patients. Consumer informatics might help these caregivers in coordinating care. However, few consumer informatics applications explicitly focus on supporting CMC caregivers' needs.ObjectiveThis systematic mapping literature review aims to provide an overview and a structured understanding of the consumer informatics designed for CMC and their caregivers.MethodsWe followed a systematic mapping literature review process to provide an overview of the existing Consumer Informatics literature for CMC, which is the scope of our study. We screened IEEE Xplore, Web of Science, and PubMed databases using a preset list of mesh terms that cover the use of medical informatics by children with medical complexities and their caregivers. The selected articles are peer-reviewed English publications that were empirically validated from January 2002 to January 2022. After selecting and filtering the articles, we analyzed them based on the preset mapping questions using the following criteria: publication year, publication source, research type, contribution type, empirical type, the need addressed, target audience, technology users, and consumer informatics' type.ResultsThe initial search resulted in a number of (N = 2,275) articles, and 17 selected publications were included. The results showed an increasing interest in CMC consumer informatics publications over time. Most of the studies were published in 2021, and feasibility research is the dominant research type. The most used technology was telehealth and telemedicine, followed by mobile health. The technologies addressed various needs, including; coordination & follow-up, medical safety, education & social support, daily living activities, shared decision making, information seeking, and emotional support. Most of the efforts were focused on ensuring good coordination and follow-up.ConclusionsCMC consumer informatics is a promising research field to present novel initiatives and approaches to manage the caregivers' workload. Future research should be shifted toward providing more evidence-based studies to examine the effectiveness of CMC consumer informatics solutions and identify the related challenges and limitations.https://www.frontiersin.org/articles/10.3389/fdgth.2022.992838/fullchildren with medical complexitycaregiversconsumer informaticstelehealthmobile healthtelemedicine |
| spellingShingle | Onur Asan Safa Elkefi Katharine N. Clouser Stephen Percy Using health information technology to support the needs of Children with Medical Complexity: Mapping review of consumer informatics applications Frontiers in Digital Health children with medical complexity caregivers consumer informatics telehealth mobile health telemedicine |
| title | Using health information technology to support the needs of Children with Medical Complexity: Mapping review of consumer informatics applications |
| title_full | Using health information technology to support the needs of Children with Medical Complexity: Mapping review of consumer informatics applications |
| title_fullStr | Using health information technology to support the needs of Children with Medical Complexity: Mapping review of consumer informatics applications |
| title_full_unstemmed | Using health information technology to support the needs of Children with Medical Complexity: Mapping review of consumer informatics applications |
| title_short | Using health information technology to support the needs of Children with Medical Complexity: Mapping review of consumer informatics applications |
| title_sort | using health information technology to support the needs of children with medical complexity mapping review of consumer informatics applications |
| topic | children with medical complexity caregivers consumer informatics telehealth mobile health telemedicine |
| url | https://www.frontiersin.org/articles/10.3389/fdgth.2022.992838/full |
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