Lived experiences of patients with placenta accreta spectrum in Utah: a qualitative study of semi-structured interviews

OBJECTIVE: To describe the lived experience of patients undergoing diagnosis and treatment of placenta accreta spectrum (PAS). DESIGN: Qualitative study of semi-structured interviews. A content analysis was used to analyse interview data using a consistent set of codes to designate data segments that contain similar material. Codes were analysed and grouped based on thematic similarities. Thematic results were systematically reviewed, verified and audited to address trustworthiness and rigour of the data and analysis. SETTING: A single PAS programme in Utah, USA, from 2017 to 2020. PARTICIPANTS: Patients with PAS during the study period were eligible. Those experiencing fetal demise or termination were excluded. Of 25 patients contacted at random, 17 agreed to participate in interviews. Those included were predominantly non-Hispanic white, highly parous, with average age of 34.7 years. RESULTS: The lived experiences of patients with PAS emerged across the time continuum from diagnosis, pregnancy, birth, to postpartum care and recovery. Themes common across the care continuum were: the emotional burden of diagnosis and management; fear and uncertainty related to health outcomes; and lack of autonomy and medical helplessness related to medical decision-making. Many patients experienced birth-related trauma, mourned the loss of future fertility and were dissatisfied with the lack of options for treatment for this serious pregnancy complication. CONCLUSIONS: Patients undergoing diagnosis and treatment for PAS often experienced care that conflicted with their goals for pregnancy and birth. Clinical care for PAS would benefit from interventions aiming to engage patients and providers in shared decision-making and systems designed to address the social, psychological and emotional needs of patients with PAS.