Exploring experiences and expectations of prenatal health care and genetic counseling/testing in immigrant Latinas

Abstract

As the Latino population of the United States continues to increase, the specific needs of Latinos in genetic counseling continue to be unmet. Using culturally tailored genetic counseling responsive to the needs of the patient can assist in building rapport in genetic counseling sessions. We aimed to investigate the relationship between acculturation, prenatal care, genetic testing experiences, and expectations for prenatal care in an immigrant Latino population. A total of 20 Spanish‐speaking, pregnant Latinas from various Latin American countries were interviewed after completing a prenatal genetic counseling session. The semi‐structured phone interview included questions about the participants’ experiences with genetic counseling/testing, prenatal health care in their home country, their current prenatal care in the United States, and information they felt to be important to know during their pregnancy. Although this study showed no statistically significant associations between acculturation, prenatal care, and genetic counseling/testing experiences, six significant content domains were identified as relevant to the participants. Overall, we found that immigrant Latinas desire to know prenatal risk information to help them prepare, relieve guilt, and help make screening/testing/family planning decisions. These Latinas reported the genetic counselor provided confidence, a sense of autonomy, and empowerment, for them to make their own decisions regarding prenatal screening/testing. The participants also spoke about stressors unique to the immigrant population, most notably being away from their older children and other family members. Identifying relevant factors about the lived experience of this population can help genetic counselors better address possible needs, feelings of guilt, and/or isolation and identifying women who could benefit from group‐based prenatal care, support groups, or referrals to social work.

Pregnant Hispanic women's views and knowledge of prenatal genetic testing

“…Our sample included English-speaking Hispanic women residing in the coastal gateway to the Texas-Mexico border which may not represent Hispanic populations in other parts of the US. Latina immigrant women may face additional challenges and stressors related to their decision to accept or decline prenatal testing, so these findings may not represent their views (Garza et al, 2020). The sample size of this qualitative study, although small, allowed for evidence of data saturation by the tenth participant.…”

“…The participants in our study were already designated as 'high-risk' patients having been referred to a specialist (maternal-fetal medicine). Although interviews were conducted immediately preceding their visit with the maternal-fetal medicine specialist, the fact they women may face additional challenges and stressors related to their decision to accept or decline prenatal testing, so these findings may not represent their views (Garza et al, 2020). The sample size of this qualitative study, although small, allowed for evidence of data saturation by the tenth participant.…”

“Un abrazo a la distancia”: An Exploration of Spanish-Speaking Women’s Experiences with Pregnancy and Social Isolation in an Urban U.S. Setting

“…Further complicating this dynamic is that during the daughter's previous visits to the United States, the participant's mother would get very sick and sad, and ask for the little girl to return quickly. It was painful for the participant to live socially and geographically isolated from her daughter even prior to this new pregnancy, which has been similarly described in other studies (Garza et al, 2020). However, moving the daughter to the United States would devastate her own mother who could not travel, potentially exacerbating her social and geographic isolation.…”

“…Available evidence focuses on important but narrow aspects of Latinas’ pregnancy experiences, such as diabetes and perinatal depression, and sometimes does not include Spanish-speaking Latina women (Joiner et al, 2016; Lara-Cinisomo et al, 2019). Other studies have explored Latina women's concerns with respect to genetic counseling and prenatal care (Garza et al, 2020). However, overall the data is sparse.…”

Latinx individuals’ knowledge of, preferences for, and experiences with prenatal genetic testing: a scoping review

“…Overall, the majority of studies found that even after receiving educational interventions or genetic counseling, Latina women did not have optimal knowledge of PGT [ 17 – 25 ]. Two studies utilizing linguistically concordant providers to communicate genetic information found Latina women were able to better understand and retain complex genetic information [ 26 , 27 ].…”