Session: Preparation for Experiences of Problems in Pregnancy: Research Findings with Practice Implications (Society for Social Work and Research 21st Annual Conference - Ensure Healthy Development for all Youth)

The beginning of a desired pregnancy typically is experienced as a joyous occasion. Yet, one in five pregnancies are medically complicated due to fetal or maternal factors, challenging notions of pregnancy as a placid time of gestation.  Few approach pregnancy understanding the possibilities for challenging decisions and outcomes that are a part of surveilled pregnancy in the 21^st century. Reproductive planning, pregnancy, and the perinatal period include prenatal screening, genetic tests, and other outcomes that may confront women and their partners with decisions about medical complications of pregnancy (MCP) or genetic testing indicating uncertain risks for the fetal outcomes. Women with chronic health conditions may understand that pregnancy could damage their own health, yet also hope that the uncertainty about pregnancy outcomes will turn out positively for them individually. 

We contextualize this panel of studies in Lack of preparation for child bearing decisions: Surveying prenatal patients for awareness, a study that presented hypothetical pregnancy complications to 659 women in the prenatal period.  Living with cystinosis: The challenge of reproductive health examines the ways individuals with a chronic and life threatening illness approach reproduction.  Developing maternal identity during medically complicated pregnancy: Practicing maternal virtues prematurely suggests ways medical complications impact maternal identity formation. We end with Couples’ narratives of communion and isolation following receipt of pathogenic or uncertain prenatal genetic testing results, which examines prenatal decision making under conditions of extreme uncertainty about fetal outcomes. We will address these common themes:

What is the nature of uncertainty in pregnancy and how does it impact the population studied?

What are possible psychosocial implications for a family after such an experience?

What are the implications for social work services in those situations?

Typical pregnancies are subjected to surveillance; women with pre-existing chronic disease and those who develop medical complications are closely monitored with some experiencing extensive hospitalizations that may change the nature of the prenatal period. The rapid growth and diffusion of evolving technologies to assist in preconception genetic testing, fertility and conception, analysis of fetal DNA, and the capacity to select out “defective embryos” created during in vitrofertilization, have confronted prospective parents with unparalleled decisions and choices about an experience traditionally defined by chance. These technologies remain unregulated, expensive, and often not covered by even the most robust insurance policies. Few are paired with the psychosocial supports couples deserve.

In this symposium, we use varied analytic lenses to explore reproductive decision-making, complications of pregnancy, and the perinatal period.  All studies were approved by authors’ respective IRBs. Approaches to data collection and analysis include self-report surveys completed in the physician office, online surveys of reproductive-aged adults with rare disease, in-depth interviews with women experiencing pregnancy complications, and post-hoc interviews with couples after receipt of uncertain genetic findings. We each discuss how collaborative planning with a team of neonatal, obstetrics, and other specialists, including social workers, can help to address the risks and fears individuals experience in these circumstances and discuss ways ameliorate them.