Courtney B Cook1, Caitlin Slomp2, Jehannine Austin3,4. 1. Department of Medical Genetics, University of British Columbia, Vancouver, BC, V5Z 4H4, Canada. 2. Department of Psychiatry, University of British Columbia, Vancouver, BC, V5Z 4H4, Canada. 3. Department of Medical Genetics, University of British Columbia, Vancouver, BC, V5Z 4H4, Canada. jehannine.austin@ubc.ca. 4. Department of Psychiatry, University of British Columbia, Vancouver, BC, V5Z 4H4, Canada. jehannine.austin@ubc.ca.
Abstract
OBJECTIVE: To develop a theoretical model to explain how parents think about the process of communicating with their affected child about the psychiatric manifestations of 22q11DS. METHODS: Semi-structured interviews were conducted with parents of children with 22q11DS, who had all received psychiatric genetic counseling. Interviews were recorded, transcribed verbatim, and analyzed concurrently with data collection, using interpretive description. Identified themes were used to inductively develop a model of how parents think about communicating with their child about psychiatric risk in 22q11DS. RESULTS: From interviews with 10 parents, we developed a model representing the communication of psychiatric risk in 22q11DS as a process where various dynamic contextual factors (e.g., perception of risk, desire to normalize) act as either motivators or barriers to communication. Parents described challenges with the content, process, and outcome of these conversations. Parents wanted hands on, practical, personalized, and ongoing support from health professionals around communication about these issues. CONCLUSION: This model may help equip genetics professionals to support parents to communicate effectively with their children in order to improve health outcomes and family adaptation to 22q11DS. PRACTICE IMPLICATIONS: Our findings may apply not only to 22q11DS, but also to other genetic conditions where psychiatric manifestations occur.
OBJECTIVE: To develop a theoretical model to explain how parents think about the process of communicating with their affected child about the psychiatric manifestations of 22q11DS. METHODS: Semi-structured interviews were conducted with parents of children with 22q11DS, who had all received psychiatric genetic counseling. Interviews were recorded, transcribed verbatim, and analyzed concurrently with data collection, using interpretive description. Identified themes were used to inductively develop a model of how parents think about communicating with their child about psychiatric risk in 22q11DS. RESULTS: From interviews with 10 parents, we developed a model representing the communication of psychiatric risk in 22q11DS as a process where various dynamic contextual factors (e.g., perception of risk, desire to normalize) act as either motivators or barriers to communication. Parents described challenges with the content, process, and outcome of these conversations. Parents wanted hands on, practical, personalized, and ongoing support from health professionals around communication about these issues. CONCLUSION: This model may help equip genetics professionals to support parents to communicate effectively with their children in order to improve health outcomes and family adaptation to 22q11DS. PRACTICE IMPLICATIONS: Our findings may apply not only to 22q11DS, but also to other genetic conditions where psychiatric manifestations occur.
Authors: Anne S Bassett; Donna M McDonald-McGinn; Koen Devriendt; Maria Cristina Digilio; Paula Goldenberg; Alex Habel; Bruno Marino; Solveig Oskarsdottir; Nicole Philip; Kathleen Sullivan; Ann Swillen; Jacob Vorstman Journal: J Pediatr Date: 2011-05-12 Impact factor: 4.406
Authors: Ian M Campbell; Sarah E Sheppard; T Blaine Crowley; Daniel E McGinn; Alice Bailey; Michael J McGinn; Marta Unolt; Jelle F Homans; Erin Y Chen; Harold I Salmons; J William Gaynor; Elizabeth Goldmuntz; Oksana A Jackson; Lorraine E Katz; Maria R Mascarenhas; Vincent F X Deeney; René M Castelein; Karen B Zur; Lisa Elden; Staci Kallish; Thomas F Kolon; Sarah E Hopkins; Madeline A Chadehumbe; Michele P Lambert; Brian J Forbes; Julie S Moldenhauer; Erica M Schindewolf; Cynthia B Solot; Edward M Moss; Raquel E Gur; Kathleen E Sullivan; Beverly S Emanuel; Elaine H Zackai; Donna M McDonald-McGinn Journal: Am J Med Genet A Date: 2018-10 Impact factor: 2.802