Reproductive Healthcare Access and Genetic Testing Decision-Making Among Women With Increased Likelihood of Having a Child With Autism

Abstract

This study aims to understand reproductive healthcare decision-making and perceptions among mothers of children with an increased likelihood of autism. Researchers conducted 18 interviews (February–November 2020) with women aged 23 to 59 years (37.07 ± 7.88) in the United States. Researchers used methods from expanded grounded theory to explore women’s healthcare decision-making. Findings suggest that women pursue team-based care with an OB/GYN as their primary care provider, clear patient–provider communication delivers greater healthcare experiences, and inconsistent prenatal genetic testing communication yielded decreased opportunities and widespread misconceptions. Understanding reproductive healthcare access and decision-making among this population allows researchers to recommend interventions for improving overall health outcomes.

Keywords:

• autism
• ASD
• genetic testing
• healthcare decision-making
• reproductive health

Acknowledgements

The authors would like to thank members of their project team who are not coauthors in this work, including Rose Mason, Felicia Roberts, Taylor Halligan, Aparajita Pesaladinne, Henry Ludwig, Meagan Carrero, and Mehreen Hassan.

Ethics Approval and Consent to Participate

This study was approved by the Purdue Institutional Review Board (IRB-2019-582). All study participants provided written informed consent, including consent to be audio-recorded.

Authors’ Contributions

The study and study materials were conceived and designed by ALD, CM, and BK. Data were collected by ALD, CD, and CM. HK transcribed all audio recordings. All authors shared responsibility for data analysis and interpretation. ALD, CD, HK, and RF drafted the manuscript with multiple revisions throughout the drafting process by CM and BK. All authors read and approved the final manuscript.

Disclosure Statement

No potential conflict of interest was reported by the author(s).

Availability of Data and Materials

The data set used and analyzed for the current study are available from the corresponding author upon reasonable request.

Additional information

Funding

This project was supported with funds from the Purdue Discovery Park Big Ideas Challenge Competition (PI Kelleher). CM received support from the National Center for Advancing Translational Sciences through a Career Development Award (KL2TR002530).