Patient and Family Experiences of Adverse Pregnancy Events in Canada from a Multicultural Perspective

Abstract

Background: Maternal morbidity can be conceptualized in multiple and unique ways by healthcare professionals, and patients. For pregnant persons and their families, adverse events in pregnancy can often extend beyond the scope of clinical diagnoses. This patient-led, peer-to-peer study aimed to understand how pregnant persons and their families described and understood adverse events in pregnancy in Canada using a multicultural perspective. Methods: The Patient and Community Engagement Research (PaCER) program is program offered through the University of Calgary. Students are patient and community researchers trained in qualitative health research and committed to finding innovative ways of engaging patients in the health care research that matters to them. Focus groups and individual interviews were used to understand the experiences and perspectives of patient and community members who self-identified as experiencing adverse events in pregnancy. Data was collectively and iteratively analysed using thematic and narrative analysis. Results: Thirteen participants from diverse backgrounds and with a range of pregnancy experiences participated in focus groups and individual semi-structured interviews. Five key themes emerged and were defined as: (1) access to appropriate, timely, coordinated care and follow up; (2) lack of transparent communication from healthcare providers and the ways power differentials and need for urgent action affected shared decision making; (3) cultural differences between participants’ traditions, and Canadian pregnancy care practices; (4) mental health impacts as participants struggled to access diagnosis for conditions that “didn’t feel right” and to understand “why” adverse events happened (5) supports and resources participants felt were missing that would have been most helpful to managing the morbidity. Our team also identified five actionable recommendations for dissemination and implementation of study findings. Conclusions: This study demonstrates that people with lived pregnancy experience may not perceive pregnancy-related morbidity as a list of adverse clinical conditions, but instead as negative consequences resulting from lack of transparent communication with pregnancy-care providers, and access to timely and culturally appropriate care, supports and resources. Our findings identify key research priorities and provide unique insights into designing best practices for more person-centred, culturally cognisant, and responsive maternal health policy and care going forward.