caa a22 4500 605544891 CHVBK 20210128100933.0 cr unu---uuuuu 210128e20151001xx s 000 0 eng 10.1007/s10897-014-9806-4 doi (NATIONALLICENCE)springer-10.1007/s10897-014-9806-4 Parental Communication and Experiences and Knowledge of Adolescent Siblings of Children with 22q11.2 Deletion Syndrome [Elektronische Daten] [Rebecca Okashah, Kelly Schoch, Stephen Hooper, Vandana Shashi, Nancy Callanan] 22q11.2 deletion syndrome (22q11DS) is the most common microdeletion in humans. There have been few studies assessing the impact of this condition on the family and no previous studies conducted on unaffected siblings of children with 22q11DS. The goal of this study was to determine the frequency, method, and content of information being communicated by parents to unaffected siblings about the condition and to assess unaffected siblings' knowledge of 22q11DS and perceptions of the impact of the condition on their affected sibling and themselves. Families were recruited from several 22q11DS educational and support organizations and asked to complete a single anonymous online survey. Families were eligible to participate if they had one child with 22q11DS and at least one unaffected child between the ages of 12 and 17. Survey questions were developed based on previous literature and authors' expertise with individuals with 22q11DS. Responses to quantitative and qualitative questions were analyzed to calculate frequencies and proportions and to extract themes, respectively. A total of 25 families (defined as a unit of at least one parent, one affected child, and at least one unaffected child) participated in the study. Parents shared genetic information less often as compared to behavioral and medical information. Siblings of children with 22q11DS had both positive and negative experiences in having a brother or sister with this condition. Genetic counselors can use the results of this study to develop anticipatory guidance for parents of children with 22q11DS in talking with their unaffected children about the condition. National Society of Genetic Counselors, Inc., 2014 22q11.2 deletion syndrome nationallicence Sibling nationallicence Knowledge nationallicence Experiences nationallicence Information nationallicence Communication nationallicence Genetic counseling nationallicence Okashah Rebecca Department of Pediatrics, Children's Hospital of San Antonio, 333 North Santa Rosa Street, 78207, San Antonio, TX, USA aut Schoch Kelly Department of Pediatrics, Duke University, Durham, NC, USA aut Hooper Stephen Department of Allied Health, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA aut Shashi Vandana Department of Pediatrics, Duke University, Durham, NC, USA aut Callanan Nancy University of North Carolina-Greensboro, Greensboro, NC, USA aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/5(2015-10-01), 752-759 1059-7700 24:5<752 2015 24 10897 https://doi.org/10.1007/s10897-014-9806-4 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9806-4 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Okashah Rebecca Department of Pediatrics, Children's Hospital of San Antonio, 333 North Santa Rosa Street, 78207, San Antonio, TX, USA aut NATIONALLICENCE 700 1- Schoch Kelly Department of Pediatrics, Duke University, Durham, NC, USA aut NATIONALLICENCE 700 1- Hooper Stephen Department of Allied Health, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA aut NATIONALLICENCE 700 1- Shashi Vandana Department of Pediatrics, Duke University, Durham, NC, USA aut NATIONALLICENCE 700 1- Callanan Nancy University of North Carolina-Greensboro, Greensboro, NC, USA aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/5(2015-10-01), 752-759 1059-7700 24:5<752 2015 24 10897