Exploring the role of digital tools in rare disease management: An interview‐based study.
While digital tools, such as the Internet, smartphones, and social media, are an important part of modern society, little is known about the specific role they play in the healthcare management of individuals and caregivers affected by rare disease. Collectively, rare diseases directly affect up to...
| Publicado en: | Journal of Genetic Counseling Vol. 34; no. 1; pp. 1 - 13 |
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| Autores principales: | , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Feb2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=183983311&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 183983311 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10597700 41A jtl: Journal of Genetic Counseling issn: 10597700 maglogo: N pubinfo: dt: Feb2025 vid: 34 iid: 1 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 183983311 177177483 183983311 183983311 10.1002/jgc4.1908 183983311 ppf: 1 ppct: 12 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Exploring the role of digital tools in rare disease management: An interview‐based study. aug: au: Chang, Andrea Huang, Sarah D. Benjamin, Daniel J. Schmidt, Johanna L. Palmer, Christina G. S. Garrison, Nanibaa' A. affil: Department of Human Genetics, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles California,, USA sug: subj: Rare Diseases Therapy Disease Management Methods Patient Attitudes Caregiver Attitudes Digital Technology Utilization Human Male Female Adolescence Adult United States Qualitative Studies Semi-Structured Interview Purposive Sample Surveys Funding Source Thematic Analysis Trust Social Networks Genetic Counselors Adolescent: 13-18 years Adult: 19-44 years Male Female ab: While digital tools, such as the Internet, smartphones, and social media, are an important part of modern society, little is known about the specific role they play in the healthcare management of individuals and caregivers affected by rare disease. Collectively, rare diseases directly affect up to 10% of the global population, suggesting that a significant number of individuals might benefit from the use of digital tools. The purpose of this qualitative interview‐based study was to explore: (a) the ways in which digital tools help the rare disease community; (b) the healthcare gaps not addressed by current digital tools; and (c) recommended digital tool features. Individuals and caregivers affected by rare disease who were comfortable using a smartphone and at least 18 years old were eligible to participate. We recruited from rare disease organizations using purposive sampling in order to achieve a diverse and information rich sample. Interviews took place over Zoom and reflexive thematic analysis was utilized to conceptualize themes. Eight semistructured interviews took place with four individuals and four caregivers. Three themes were conceptualized which elucidated key aspects of how digital tools were utilized in disease management: (1) digital tools should lessen the burden of managing a rare disease condition; (2) digital tools should foster community building and promote trust; and (3) digital tools should provide trusted and personalized information to understand the condition and what the future may hold. These results suggest that digital tools play a central role in the lives of individuals with rare disease and their caregivers. Digital tools that centralize trustworthy information, and that bring the relevant community together to interact and promote trust are needed. Genetic counselors can consider these ideal attributes of digital tools when providing resources to individuals and caretakers of rare disease. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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