Health information delivery to patients at risk of having a small for gestational age/growth restricted baby in Aotearoa New Zealand: what can we learn from lived experience?

INTRODUCTION: The importance of access to reliable information during pregnancy is heightened in pregnancy complications. Impaired fetal growth (including small for gestational age (SGA) and growth restricted (FGR) fetuses) affects up to 10% of pregnancies and is associated with increased risk of morbidity and mortality. However, there is a paucity of accessible, evidence-based, information to support parents told their baby is not growing as expected. This study sought to explore patient experiences of information provision and seeking during pregnancies at risk of impaired fetal growth. METHODS: Focus groups and individual in-depth interviews (totalling 24 participants from across Aotearoa New Zealand) were conducted and recorded via Zoom. Discussions were led using pre-defined prompts to explore the experiences, preferences, and suggested improvements for information delivery. Interviews were transcribed verbatim, and data underwent inductive thematic analysis. RESULTS: Participants held expectations that their pregnancy would proceed normally; the majority experienced some level of distress at a diagnosis of complications. Information provided by the clinical team was highly valued, particularly when well curated and delivered with empathy. However, for many, this information needed to be supplemented. Additional, nuanced information was sought through online sources, and this included information on causes of impaired fetal growth, the meaning of medical terminology used, and lived experiences of pregnancy and birth. The timing of information provided by their clinical team impacted participant perceived capacity to comprehend information and their response to it. Participants preferred information to be offered at various times, in a range of forms, each adding to the layering of a more complete understanding of their situation. Preferences for information included being able to access a range of credible information in one place to promote greater coherence between the needs and lived experiences of patients and their healthcare providers. CONCLUSIONS: Timely, nuanced and salient information is extremely important to pregnant people and their families when navigating high-risk clinical pathways during pregnancy. Our results provide guidance on improving informational resources in the context of impaired fetal growth.