Thread by @PrescillaCW

1/11: Excited to tweet about our just published paper! @AliciaSemaka, Rolan Batallones, Caitlin Slomp, @EMM_GC, @Inglis_Angela, Marlene Moretti & @J9_Austin: parents experience of psychiatric genetic counseling (pGC) for 22q11.2DeletionSyndrome #GCChat onlinelibrary.wiley.com/doi/10.1002/jg…

2/11: We know early intervention leads to best outcomes for psychiatric conditions, yet psych issues associated with 22qDS are often inadequately addressed by health care providers nature.com/articles/gim20…, pubmed.ncbi.nlm.nih.gov/26033850/, pubmed.ncbi.nlm.nih.gov/22833231/ & services are underused

3/11: Parents often eventually learn on their own about associated mental health issues pubmed.ncbi.nlm.nih.gov/18698620/ & are very concerned about their child developing psychosis/schizophrenia, ~ 25-41% ajp.psychiatryonline.org/doi/full/10.11… compared to general population chance of 3%.

4/11: We have studied the process of how pGC empowers people to be proactive with their mental health onlinelibrary.wiley.com/doi/abs/10.100… and proposed pGC as a way to address the psychiatric concerns amongst families with 22qDS.

5/11: We provided pGC to parents of children with 22qDS & interviewed them 1 month after to evaluate perceived value & fit of pGC with respect to their needs.

6/11: We used grounded theory to generate a model for the process of building parental awareness over time of psychiatric risks associated with 22qDS & protective/management strategies for mental health.

7/11: Parents talked about numerous barriers that may have prevented them from reaching out to health care providers and/or learning more about associated mental health problems & what they can do to be proactive, e.g. parental fear and stigma

8/11: This stalled awareness led parents to “carry the burden,” expressing fear over missing ‘red flags” for mental illness and stress over having to advocate for their child’s mental health…Until.....

9/11: …Psychiatric genetic counseling helped parents achieve an “awareness to act” to protect and/or manage their child’s mental health!

10/11: Parents expressed after pGC, gaining confidence in “being alert” to emerging symptoms of psychiatric illness and “feeling equipped” with tools that they can use to protect their child’s mental health

11/11: Take home message: Parents of kids w/22qDS found value in psych genetic counseling. It met their need to feel like they can be proactive in reducing chance for mental illness, improving outcomes, & that mental health problems are manageable onlinelibrary.wiley.com/doi/10.1002/jg…

Thanks to @TPGG1 and @J9_Austin for this wonderful opportunity to collaborate on this meaningful GC research :)

One more quote :)