Title: The Patient Experience of IVF
Description: This dissertation describes the patient experience. In Chapter One, we review the currentstate of patient-centered care with a specific focus on women’s experiences in infertility treatments, highlighting the gaps in our understanding of their experiences. The four independent but complementary aims of the dissertation studies are then introduced, and we identify how they address current gaps to advance our understanding of women’s experiences using reproductive technology. In Chapter One, we also introduce an innovative service design tool, journey mapping, as well as the Burden of Treatment Framework which guided the dissertation. Chapter Two, An Integrative Review of Journey Mapping to Document the Patient Experience, presents an integrative review examining the use of journey mapping in health care services research. In the analysis of these twenty-two studies, we demonstrate how journey mapping has been adapted to describe the patient experience. While the qualitative rigor of the included studies is of good quality, the inconsistent application of design standards in the accompanying visualizations, when present, suggests that further work and guidance is needed in the adaptation of this service design tool for the health research field.

In Chapter Three, Journey Mapping the Patient Experience of IVF: A Social Media Analysis, we used posts from the largest infertility subreddit and patient-facing online resources to describe and visually depict the patient experience of IVF in two journey maps representing the experiences of women in their first cycle of infertility treatment and women in repeat cycles. Findings highlighted problems and unmet needs in the infertility treatment experience, including information needs, communication needs, and support needs. Chapter Four, The Burden of Treatment in IVF: An Analysis of Social Media Using a Framework for Chronic Complex Conditions, used qualitative descriptive methodology to guide inductive and deductive content analysis of posts from the same infertility subreddit. Findings suggest that Eton’s framework is applicable to infertility, but can be expanded by the inclusion of three new constructs that we identified. Finally, Chapter Five synthesizes the key findings across these four aims, outlining their strengths and limitations, and discussing implications for future research, policy, and clinical practice.