Karen C Li1, Patricia H Birch2, Bernard M Garrett3, Maura MacPhee4, Shelin Adam5, Jan M Friedman6. 1. Graduate Student Researcher, Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada. 2. Clinical Associate Professor, Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada. 3. Associate Professor, School of Nursing, University of British Columbia, Vancouver, British Columbia, Canada. 4. Xi Eta, Associate Professor, School of Nursing, University of British Columbia, Vancouver, British Columbia, Canada. 5. Clinical Assistant Professor, Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada. 6. Professor, Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada.
Abstract
PURPOSE: The purpose of this study was to explore parents' perceptions of their decisional needs when considering genome-wide sequencing (GWS) for their child. This is a partial report and focuses on how parents prefer to receive education and information to support their decision making about GWS. DESIGN: This study adopted an interpretive description qualitative methodological approach and used the concept of shared decision making and the Ottawa Decision Support Framework. METHODS: Participants were parents who had already consented to GWS, and had children with undiagnosed conditions that were suspected to be genetic in origin. Fifteen parents participated in a focus group or individual interview. Transcriptions were analyzed concurrently with data collection, iteratively, and constantly compared to one another. Repeat interviews were conducted with five of the parents to confirm, challenge, or expand on the developing concepts. FINDINGS: Participants felt that their decision to proceed with GWS for their child was an easy one. However, they expressed some unresolved decisional needs, including a lack of knowledge about certain topics that became relevant and important to them later and a need for more support and resources. Participants also had ongoing informational and psychosocial needs after the single clinical encounter where their decision making occurred. CONCLUSIONS: Participants expressed unmet decisional needs, which may have influenced the quality of their decisions. The strategies that participants suggested may help create parent-tailored education, counseling, decision support, and informed consent processes. CLINICAL RELEVANCE: Health care professionals who offer GWS for children should assess parents' values, priorities, and informational needs and tailor information accordingly. There are opportunities for nurses to become involved in supporting families who are considering GWS for their child.
PURPOSE: The purpose of this study was to explore parents' perceptions of their decisional needs when considering genome-wide sequencing (GWS) for their child. This is a partial report and focuses on how parents prefer to receive education and information to support their decision making about GWS. DESIGN: This study adopted an interpretive description qualitative methodological approach and used the concept of shared decision making and the Ottawa Decision Support Framework. METHODS:Participants were parents who had already consented to GWS, and had children with undiagnosed conditions that were suspected to be genetic in origin. Fifteen parents participated in a focus group or individual interview. Transcriptions were analyzed concurrently with data collection, iteratively, and constantly compared to one another. Repeat interviews were conducted with five of the parents to confirm, challenge, or expand on the developing concepts. FINDINGS:Participants felt that their decision to proceed with GWS for their child was an easy one. However, they expressed some unresolved decisional needs, including a lack of knowledge about certain topics that became relevant and important to them later and a need for more support and resources. Participants also had ongoing informational and psychosocial needs after the single clinical encounter where their decision making occurred. CONCLUSIONS:Participants expressed unmet decisional needs, which may have influenced the quality of their decisions. The strategies that participants suggested may help create parent-tailored education, counseling, decision support, and informed consent processes. CLINICAL RELEVANCE: Health care professionals who offer GWS for children should assess parents' values, priorities, and informational needs and tailor information accordingly. There are opportunities for nurses to become involved in supporting families who are considering GWS for their child.
Authors: Jennifer A Oberg; Jenny Ruiz; Trisha Ali-Shaw; Kathryn A Schlechtweg; Angela Ricci; Andrew L Kung; Wendy K Chung; Paul S Appelbaum; Julia L Glade Bender; Jennifer M Levine Journal: JCO Precis Oncol Date: 2018-03-14
Authors: Patricia Birch; S Adam; N Bansback; R R Coe; J Hicklin; A Lehman; K C Li; J M Friedman Journal: J Genet Couns Date: 2016-05-23 Impact factor: 2.537
Authors: Laura Boland; Ian D Graham; France Légaré; Krystina Lewis; Janet Jull; Allyson Shephard; Margaret L Lawson; Alexandra Davis; Audrey Yameogo; Dawn Stacey Journal: Implement Sci Date: 2019-01-18 Impact factor: 7.327
Authors: Samantha Pollard; Deirdre Weymann; Jessica Dunne; Fatemeh Mayanloo; John Buckell; James Buchanan; Sarah Wordsworth; Jan M Friedman; Sylvia Stockler-Ipsiroglu; Nick Dragojlovic; Alison M Elliott; Mark Harrison; Larry D Lynd; Dean A Regier Journal: Eur J Hum Genet Date: 2021-04-26 Impact factor: 4.246