Infertility patient-provider communication and (dis)continuity of care: An exploration of illness identity transitions

•Patients’ infertility identity (i.e., what infertility means as part of their overall identity) changes over time and treatment.•Patients’ infertility identity relates to their treatment goals and expectations.•Patients discontinue care with providers when needs and goals are not met.•As treatment continues, patients want individual care and shared decision-making.•As grief increases, patients want empathy, realistic hope, and holistic care. To identify how and why infertility patients’ communication with health care providers relates to their continuity of care within infertility treatment. A grounded theory analysis was conducted for 25 in-depth interviews across three coding phases, where we remained open to all themes present in the data, narrowed to most prominent themes, and found the connections between the themes. Based on our identified themes, we created a conceptual model that explains why infertility patients (dis)continued care with one or more clinician. Through this model, we describe two infertility identity transitions for patients: Transition 1: “Infertility as Temporary” to “Infertility as Enduring”; and Transition 2: “Infertility as Enduring” to “Infertility as Integrated.” The study explains how and why patients’ view of their infertility affects their communication, and thus their continuity of care, with clinicians. To provide patient-centered care within infertility treatment, providers can recognize how patients’ view of their infertility, and thus their needs, goals, and expectations, shift throughout their infertility experience.