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Negotiating Discordance: How Adolescent-parent Dyads Reach a Joint Decision regarding which Genomic Results to Learn during a Research Study

Perry, Katherine
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1626356893073779

Abstract Details

2021, MS, University of Cincinnati, Medicine: Genetic Counseling.
Genetic testing decisions are frequently made by parents on behalf of their child under age 18. Although there is increasing recognition of the benefits and importance of including adolescents in decision-making about learning genetic research results, limited information is available to guide providers and researchers on how to engage adolescents in a meaningful way in these decisions. We qualitatively examined how adolescents and parents came to a joint decision regarding genomic information about the adolescent in a research setting. Pre-existing transcripts of 65 facilitated discussions between adolescent-parent dyads who initially made different decisions about the types of genomic information to learn about the adolescent as part of a research study were analyzed using Atlas.ti. Content analysis consisted of two rounds of iterative coding to explore how dyads, who initially made different independent choices, reached consensus. Two primary transitional processes were identified: change in knowledge and change in ability to express decision-making rationale. These processes were modified by the adolescent’s confidence and the facilitator’s decisional coaching skills. There was often an identifiable moment in the transcript where the discordance was resolved by a change in knowledge. Adolescents who exhibited confidence in their decisions or were coached to express their rationale for their choices often resulted in the parent yielding to the adolescent’s preferences when making joint decisions. Facilitated discussions employing decisional coaching with adolescent and parent dyads, promoted adolescents’ developing autonomy and enabled them to participate in informed decision-making about the genomic results they wanted to learn about the adolescent. Our study focused on the decision-making process between adolescent-parent dyads, thus addressing a critical gap in the pediatric shared decision-making knowledge base. Our findings contribute evidence that can inform best practice models to engage adolescents and parents in decision-making about which type of genomic results to learn about the adolescent.
Cynthia Prows, R.N. M.S.N. (Committee Chair)
Ellen Lipstein (Committee Member)
Melanie Myers, Ph.D. (Committee Member)
42 p.
Genetics
Adolescent-parent dyads; Discordant; Joint decision; Qualitative analysis; Facilitated discussions; Genomic results

Recommended Citations

Citations

  • Perry, K. (2021). Negotiating Discordance: How Adolescent-parent Dyads Reach a Joint Decision regarding which Genomic Results to Learn during a Research Study [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1626356893073779

    APA Style (7th edition)

  • Perry, Katherine. Negotiating Discordance: How Adolescent-parent Dyads Reach a Joint Decision regarding which Genomic Results to Learn during a Research Study. 2021. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1626356893073779.

    MLA Style (8th edition)

  • Perry, Katherine. "Negotiating Discordance: How Adolescent-parent Dyads Reach a Joint Decision regarding which Genomic Results to Learn during a Research Study." Master's thesis, University of Cincinnati, 2021. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1626356893073779

    Chicago Manual of Style (17th edition)

ucin1626356893073779
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This open access ETD is published by University of Cincinnati and OhioLINK.