Talking about parent support

In our interviews with family support groups, we’ve learned that preparation means different things for different conditions and different families. We’re presenting some of our early findings this week at the American Society for Bioethics and Humanities 2021 conference.

After receiving genetic results about their pregnancy or their baby, support groups are often the first place parents turn. These groups may be local, especially for more common conditions such as Down syndrome, or they may be national or even international; and some operate mainly through social media platforms. These groups typically offer information and services to people with genetic conditions and their families throughout the life course.

Title slide of ASBH 2021 presentation. The title is "Never fully prepared: Views of patient advocacy groups on how to prepare families for a child with a genetic condition." The authors are Kaitlynn P. Craig, Kirsten Riggan, and Marsha Michie. Logos on slide are for the Prepare study (Prenatal Preparation: Actions and Results) and for Case Western Reserve University.

Our presentation this week at ASBH 2021 describes some of our early findings from interviews with these groups, including national groups and local groups from our three recruitment areas (Northern Ohio, central North Carolina, and New York City).

While many of our interviewees agreed that no parent is ever “fully prepared” to raise any child, including one with a genetic condition, they pointed to some advantages of genetic testing during pregnancy, including the opportunity to emotionally process results and to make some practical plans for the future, along with building connections with a community of families who share similar experiences. Some also mentioned disadvantages of prenatal genetic testing, especially when this results in a flood of information about possible future medical issues that may overwhelm parents.

We are so grateful to the representatives from these non-profit groups for sharing their expertise and experience with us, and look forward to future comparisons with our interview data from parents and their clinicians.

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