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Parents' views about healthcare professionals having real-time remote access to their young child's diabetes data: Qualitative study.

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cam.issuedOnline2022-05-25
dc.contributor.authorKimbell, Barbara
dc.contributor.authorRankin, David
dc.contributor.authorHart, Ruth I
dc.contributor.authorAllen, Janet M
dc.contributor.authorBoughton, Charlotte K
dc.contributor.authorCampbell, Fiona
dc.contributor.authorFröhlich-Reiterer, Elke
dc.contributor.authorHofer, Sabine E
dc.contributor.authorKapellen, Thomas M
dc.contributor.authorRami-Merhar, Birgit
dc.contributor.authorSchierloh, Ulrike
dc.contributor.authorThankamony, Ajay
dc.contributor.authorWare, Julia
dc.contributor.authorHovorka, Roman
dc.contributor.authorLawton, Julia
dc.contributor.authorKidsAP Consortium
dc.contributor.orcidKimbell, Barbara [0000-0003-4510-9862]
dc.contributor.orcidRankin, David [0000-0002-5835-3402]
dc.contributor.orcidFröhlich-Reiterer, Elke [0000-0003-1798-3237]
dc.contributor.orcidHofer, Sabine E [0000-0001-6778-0062]
dc.contributor.orcidRami-Merhar, Birgit [0000-0001-5575-5222]
dc.contributor.orcidSchierloh, Ulrike [0000-0002-7644-4818]
dc.contributor.orcidHovorka, Roman [0000-0003-2901-461X]
dc.date.accessioned2022-05-26T08:00:37Z
dc.date.available2022-05-26T08:00:37Z
dc.date.issued2022-09
dc.date.submitted2021-11-11
dc.date.updated2022-05-26T08:00:37Z
dc.descriptionFunder: Juvenile Diabetes Research Foundation United Kingdom; Id: http://dx.doi.org/10.13039/100008664
dc.descriptionFunder: National Institute for Health Research; Id: http://dx.doi.org/10.13039/501100000272
dc.descriptionFunder: Wellcome Trust; Id: http://dx.doi.org/10.13039/100010269
dc.descriptionFunder: JDRF International; Id: http://dx.doi.org/10.13039/100008871
dc.descriptionFunder: Cambridge Biomedical Research Centre; Id: http://dx.doi.org/10.13039/501100018956
dc.descriptionFunder: European Commission; Id: http://dx.doi.org/10.13039/501100000780
dc.description.abstractOBJECTIVES: We explored parents' views about healthcare professionals having remote access to their young child's insulin and glucose data during a clinical trial to inform use of data sharing in routine pediatric diabetes care. RESEARCH DESIGN AND METHODS: Interviews with 33 parents of 30 children (aged 1-7 years) with type 1 diabetes participating in a randomized trial (KidsAP02) comparing hybrid closed-loop system use with sensor-augmented pump therapy. Data were analyzed using a qualitative descriptive approach. RESULTS: Parents reported multiple benefits to healthcare professionals being able to remotely access their child's glucose and insulin data during the trial, despite some initial concerns regarding the insights offered into everyday family life. Key benefits included: less work uploading/sharing data; improved consultations; and, better clinical input and support from healthcare professionals between consultations. Parents noted how healthcare professionals' real-time data access facilitated remote delivery of consultations during the COVID-19 pandemic, and how these were more suitable for young children than face-to-face appointments. Parents endorsed use of real-time data sharing in routine clinical care, subject to caveats regarding data access, security, and privacy. They also proposed that, if data sharing were used, consultations for closed-loop system users in routine clinical care could be replaced with needs-driven, ad-hoc contact. CONCLUSIONS: Real-time data sharing can offer clinical, logistical, and quality-of-life benefits and enhance opportunities for remote consultations, which may be more appropriate for young children. Wider rollout would require consideration of ethical and cybersecurity issues and, given the heightened intrusion on families' privacy, a non-judgmental, collaborative approach by healthcare professionals.
dc.identifier.doi10.17863/CAM.84913
dc.identifier.eissn1399-5448
dc.identifier.issn1399-543X
dc.identifier.otherpedi13363
dc.identifier.urihttps://www.repository.cam.ac.uk/handle/1810/337499
dc.languageen
dc.language.isoeng
dc.publisherHindawi Limited
dc.publisher.urlhttp://dx.doi.org/10.1111/pedi.13363
dc.subjectchildren
dc.subjectdata sharing
dc.subjecthealthcare professionals
dc.subjectparents
dc.subjectqualitative
dc.subjecttype 1 diabetes
dc.subjectCOVID-19
dc.subjectChild
dc.subjectChild, Preschool
dc.subjectDelivery of Health Care
dc.subjectDiabetes Mellitus, Type 1
dc.subjectGlucose
dc.subjectHumans
dc.subjectInfant
dc.subjectInsulin
dc.subjectPandemics
dc.subjectParents
dc.subjectQualitative Research
dc.subjectRandomized Controlled Trials as Topic
dc.titleParents' views about healthcare professionals having real-time remote access to their young child's diabetes data: Qualitative study.
dc.typeArticle
dcterms.dateAccepted2022-05-04
prism.publicationNamePediatr Diabetes
pubs.funder-project-idWellcome Trust (100574/Z/12/Z)
pubs.funder-project-idEuropean Commission Horizon 2020 (H2020) Societal Challenges (731560)
rioxxterms.licenseref.urihttp://creativecommons.org/licenses/by/4.0/
rioxxterms.versionVoR
rioxxterms.versionofrecord10.1111/pedi.13363

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