Patient perspectives on clinician-patient partnerships to achieve comprehensive pregnancy care in adult congenital heart disease

Adults with CHD balancing motivations and concerns in pregnancy decision-making

“…In contrast, while some themes in our schema reflect the concept analysis for risk prediction proposed for patients without medical conditions, 8 our population had more complexity to consider, and perhaps constrained choices regarding medications, birth sites, and clinicians. 11 Our findings are more similar to, although with nuanced distinctions, a study characterizing risk perception among patients with highrisk pregnancies in Iran, which identified the perception of controlling risk through resources or faith as enabling patients' to choose pregnancy, and that priorities of motherhood and fulfilling ideas of marriage outweighed perceived risks. 19 Our study population tended to overestimate their risks of genetic transmission and pregnancy loss, compared with clinical perspectives on these risks.…”

“…This study's methods are described in detail elsewhere, as this article reports a subset of the data from our interview study. 11 Briefly, women with simple, moderate, or complex adult CHD per current guidelines 12 who had received prenatal care during 2010-2019 at the University of Washington were identified through medical records query and invited by phone and email to participate in a telephone interview. Semi-structured interviews took place between April 2019 and January 2020, lasted 24-64 minutes, and were audio-recorded and professionally transcribed.…”

“…This manuscript reports on themes derived from a subset of codes including "ACHD impact," "motivations for pregnancy," "risk-benefit decisions," "pregnancy planning," "emotions," and "social support." Participants' views on their pregnancy care are reported in Steiner et al 11…”

“…Family identity: Some participants described their desire for pregnancy in terms of the importance of family and marriage, as a collective desire for a family, or a love for children: "I'm the youngest of six and I have, I think, 11 Biological parenthood: Some participants had considered alternative methods of becoming a parent, such as adoption or surrogacy, but were deterred by the expense, potential for emotional b. External motivations: Other motivations derived from expectations set by or for others.…”

“…Having confidence in their care team, especially physicians who were experienced with adult CHD and pregnancy, inspired confidence in their own ability to carry the pregnancy. This concept is further described in Steiner et al 11 Social support: Some patients relied on both practical resources and moral support from their families, parents, siblings, friends, and partners to lend confidence in their decision to proceed with pregnancy. "The support of my husband, honestly : : : He's like, 'You've got to get those fears and worries out of your head.'…”