Advancing Understanding and Measurement of Infertility, Related Fears and Stigma, and Associated Consequences in Low-Resource Countries

PROJECT SUMMARY
Infertility – the inability to conceive a pregnancy within 1-2 years – causes intense psychological distress and
other adverse outcomes for millions of women and men but remains understudied in low- and middle-income
countries. Infertility research is particularly limited in sub-Saharan Africa (SSA), despite findings suggesting
SSA has among the highest levels of infertility globally, especially secondary infertility (the inability to conceive
a second or higher-order pregnancy within 1-2 years). Infertility estimates in SSA range widely from 2-31% de-
pending on location, population, definitions, and assessment method; the broad range of estimates highlights
the need for further research to evaluate model assumptions. Besides uncertainty about the extent of infertility,
we lack an understanding of the mechanisms contributing to adverse outcomes. Women experiencing the “ag-
ony of infertility” are often blamed, causing physical and emotional abuse, marriage instability, poverty, social
isolation, psychological distress, and even suicide. These impacts may be exacerbated by fears of infertility
and perceived community-level infertility stigma, which have negative impacts on women’s health, health be-
haviors, and care seeking. However, existing research on these phenomena are limited. The objective of this
training grant is to conduct mentored research to address these knowledge gaps by improving the field’s un-
derstanding of infertility levels, stigma, and fears in SSA. This work leverages Performance Monitoring for Ac-
tion (PMA) in Uganda, an ongoing, longitudinal study of reproductive aged (15-49) women. I will work with my
mentors to achieve three specific aims: 1) Improve population-level infertility prevalence estimation by evaluat-
ing infertility measurement model assumptions in Uganda; 2) Understand Ugandan women’s and men’s per-
ceptions, fears, and experiences of infertility and its related stigma, and; 3) Identify dimensions of infertility
stigma and fear among women in Uganda. Results have implications for both population-based measurement
of infertility prevalence and our understanding of infertility stigma and fear, which can inform interventions to
reduce them and their impacts on health and well-being. The corresponding training objectives that will enable
me to complete the proposed research include various training activities and mentorship in: 1) advanced ana-
lytic techniques for the measurement of infertility; 2) qualitative methods; 3) psychometric research techniques;
4) infertility etiologies and relevant conceptual frameworks, and; 5) NIH-grant writing. The proposed research
will lay the groundwork for submitting a competitive R01 application in year 4 proposing a mixed-methods lon-
gitudinal study of infertility, related stigma and fear, and their impacts in SSA. The complementary research
and training will move me toward my long-term goal to become an independent investigator using interdiscipli-
nary, mixed-methods approaches to improve the scientific understanding of health disparities in fertility-related
behaviors (both fertility prevention and promotion) and outcomes in low-resource settings.

Grant Number: 5K01HD107172-04
NIH Institute/Center: NIH
Principal Investigator: Suzanne Bell