Details

Autor(en) / Beteiligte

• Watnick, Dana
• Odgis, Jacqueline A.
• Suckiel, Sabrina A.
• Gallagher, Katie M.
• Teitelman, Nehama
• Donohue, Katherine E.
• Gelb, Bruce D.
• Kenny, Eimear E.
• Wasserstein, Melissa P.
• Horowitz, Carol R.
• Dolan, Siobhan M.
• Bauman, Laurie J.

Titel

“Is that something that should concern me?”: a qualitative exploration of parent understanding of their child’s genomic test results

Ist Teil von

• HGG advances, 2021-04, Vol.2 (2), p.100027, Article 100027

Ort / Verlag

United States: Elsevier Inc

Erscheinungsjahr

2021

Link zum Volltext

Quelle

Alma/SFX Local Collection

Beschreibungen/Notizen

• Genetic counselors are trained to deliver complicated genomic test results to parents of pediatric patients. However, there is limited knowledge on how parents perceive this information and what they understand about the results. This research aims to qualitatively explore parents’ experiences receiving genomic test results for their children. As part of formative research for the NYCKidSeq Study, we recruited a purposive sample of parents of 22 children stratified by child race/ethnicity and test result classification (positive, uncertain, or negative) and conducted in-depth interviews using a semi-structured guide. Analysis was conducted using grounded theory’s constant comparative method across cases and themes. Parents described different elements of understanding: genetics knowledge; significance and meaning of positive, uncertain, or negative results; and implications for the health of their child and family. Parents reported challenges understanding technical details and significance of their child’s results but gladly allowed their providers to be custodians of this information. However, of the different elements of understanding described, parents cared most deeply about being able to understand implications for their child’s and family’s health. These findings suggest that a counseling approach that primarily addresses parents’ desire to understand how to best care for their child and family may be more appropriate than an information-heavy approach focused on technical details. Further research is warranted to confirm these findings in larger parent cohorts and to explore ways genetic counseling can support parents’ preferences without sacrificing important components of parent understanding and overall satisfaction with their experiences with genomic medicine. Parent understanding of their child’s genomic test results is complex and multi-dimensional. While providers aim to increase understanding by delivering results comprehensively, parents are focused more narrowly on implications for their child and family. This tension highlights the need to realign provider goals with those of parents.