Participant Perspectives on Data Sharing in Clinical Craniofacial Research: Qualitative Interviews With Participants With Craniofacial Microsomia and Their Caregivers.
Objective: To describe the perspectives of participants and caregivers of pediatric participants on data sharing in clinical craniofacial research. Design: Qualitative interview study of research participants' attitudes about data sharing. Setting: One-to-one interviews via web conferencing. Patient...
| Publicado en: | Cleft Palate Craniofacial Journal Vol. 63; no. 8; pp. 2319 - 2330 |
|---|---|
| Autores principales: | , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Sage Publications Inc.
Aug2026
|
| 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=195126311&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 195126311 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10556656 DF1 jtl: Cleft Palate Craniofacial Journal issn: 10556656 maglogo: Y pubinfo: dt: Aug2026 vid: 63 iid: 8 pid: 344 pub: Sage Publications Inc. place: Thousand Oaks, California artinfo: ui: 195126311 187657124 195126311 195126311 10.1177/10556656251369658 195126311 ppf: 2319 ppct: 11 formats: tig: atl: Participant Perspectives on Data Sharing in Clinical Craniofacial Research: Qualitative Interviews With Participants With Craniofacial Microsomia and Their Caregivers. aug: au: Kraft, Stephanie A. Stueckle, Laura Ayala, Elsa Beretta, Abril Heike, Carrie L. affil: Department of Bioethics and Decision Sciences, Geisinger College of Health Sciences, Danville, PA, USA sug: subj: Goldenhar Syndrome Research, Medical Electronic Health Records Communication Research Subjects Patient Attitudes Caregiver Attitudes Human Qualitative Studies Semi-Structured Interview Male Female Adolescence Adult Teleconferencing Interview Guides Thematic Analysis Coding Health Knowledge Privacy and Confidentiality Decision Making Truth Disclosure Respect Research Ethics Purposive Sample Descriptive Research Funding Source Adolescent: 13-18 years Adult: 19-44 years Male Female ab: Objective: To describe the perspectives of participants and caregivers of pediatric participants on data sharing in clinical craniofacial research. Design: Qualitative interview study of research participants' attitudes about data sharing. Setting: One-to-one interviews via web conferencing. Patients, Participants: Adults (n = 7) and adolescents (n = 8) with craniofacial microsomia and caregivers (n = 20) of children with craniofacial microsomia who previously participated in clinical craniofacial research. Interventions: Semistructured interview guide addressing 4 main topics: (1) expectations about data collection and sharing; (2) preferences and limitations for data sharing; (3) consent/assent language; and (4) gaps and future needs. Main Outcome Measure(s): We iteratively developed a qualitative codebook based on inductive interview transcript review and conducted a thematic analysis of coded data. Results: We identified 5 themes within participants' descriptions of their attitudes about data sharing: (1) participants hope that research participation and data sharing will advance science for the benefit of the craniofacial community; (2) sharing images is broadly recognized as important for craniofacial research but raises discomfort for some; (3) participants generally view broad data sharing and use positively but raise concerns focused on harm to the craniofacial community; (4) trustworthy researchers and data protections provide reassurance for sharing data; and (5) decisions about pediatric data sharing are complex in the context of developing autonomy. Conclusions: These findings illustrate ethical complexities for data sharing in clinical craniofacial research related to balancing community-oriented benefits and risks, providing control over sharing images, ensuring researcher trustworthiness, and respecting a child's future autonomy interests. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
|---|