Postpartum psychosis (PP) is a severe psychiatric disorder that occurs in one to two per 1,000 people after delivery. Since untreated PP can have significant consequences, early recognition of the disorder, access to care, and initiation of treatment are essential. There is a lot of literature describing barriers to care for people with perinatal depression, such as a desire to prioritize the infant’s needs about one’s own, a need for perinatal-sensitive care, and a concern about medication safety while breastfeeding. However, there is a limited understanding of specific barriers to care for patients with PP. Research has yet to explore how and why people with PP access treatment.
Existing research on access to treatment for individuals with PP has focused on inpatient hospitalizations and may fail to assess the experiences of people who didn’t access treatment during their episode or who received treatment but were not hospitalized. Individuals can have poor insight while experiencing psychosis and clinicians may not have sufficient knowledge of PP to provide appropriate treatment. Thus, understanding the factors that facilitate or limit access to care for this population is crucial for improving treatment experiences of PP.
This study aims to describe barriers to care, treatment-seeking behaviors, and treatment experiences among individuals with PP in the Massachusetts General Hospital Postpartum Psychosis Project (MGHP3). The MGHP3 Healthcare Access Survey (HAS), a cross-sectional survey, was incorporated into the study design in 2021 to assess participants’ experiences with healthcare.
The HAS is a structured questionnaire with multiple choice questions, Likert scales, and open-ended questions. The HAS was distributed to all eligible participants who had completed their MGHP3 interview since the start of the study. Participants may complete one survey per episode of PP. This paper reports on 146 surveys completed by 139 individuals (a response rate of 46.8%). Those who responded to the survey didn’t differ by race, ethnicity, employment status, or number of PP episodes from those who did not respond. Non-responders were significantly more likely to be unmarried, have public health insurance or no health insurance, and have lower educational attainment at the time of the MGHP3 interview than those who responded. Respondents were located in all four regions of the U.S. and six other countries.
Barriers to care
Most participants reported having someone to watch their infant so they could attend medical appointments during the postpartum period. On average, participants said that a lack of availability of services was “somewhat” a barrier. Just under half of the participants reported “sometimes” or “never” receiving an appointment for acute symptoms as soon as they wanted. Participants generally said that high cost, lack of culturally competent care, and inadequate or no insurance coverage were “not at all” barriers.
Treatment-seeking behaviors
Individuals who sought treatment during their episode(s), were most likely to contact obstetric providers, followed by emergency medical professionals. During most episodes, participants went to an emergency room or crisis center at least once, with a quarter of respondents going more than once. Most individuals who received treatment voluntarily did so because of the influence of their family and friends. Fear of child protective services involvement, fear of separation from the infant, and fear of stopping breastfeeding were generally considered “somewhat” important factors in deciding to seek treatment.
Treatment experiences
The majority of participants received treatment, including inpatient hospitalization, medication, psychotherapy, and/or electroconvulsive therapy. They most often received treatment from a psychiatric provider or an emergency medical professional. Just over half of participants were not told about self-help or support groups and wanted more information to manage their PP. Nearly three-quarters of respondents took medication as treatment, despite one-quarter of respondents not wanting to initially. Nearly all participants took their medication as prescribed.
Just over half of the episodes resulted in inpatient hospitalizations, and most participants did not have access to their infant during their hospitalization. About one-third of those who were breastfeeding or pumping at the time of hospital admission weren’t given access to a breast pump during their hospitalization. Nearly half of respondents had ongoing delivery-related medical issues during their hospitalization, and most respondents who were hospitalized were set up with long-term care following discharge.
For this sample, lack of availability of services and/or appointments were obstacles to care. This is expected given that there are few perinatal mental health treatment programs in the U.S. and other countries, and many front-line providers don’t receive much training in perinatal mental health. Since many participants went to obstetric providers for care, it is important to improve collaborations between psychiatry and obstetrics in the identification of PP. Moreover, the frequent involvement of emergency room physicians demonstrates the need for providers across specialties to be properly trained in the presentation and treatment of PP.
These findings highlight the need for increased patient education and support during treatment and recovery. Similarly, educating partners and other loved ones on the signs and symptoms of PP may improve time to treatment. Patients also desire informal support networks, such as peer support. It is important that participants are supported after hospitalization to ensure positive long-term outcomes.
Most of the barriers assessed in this study didn’t significantly impede access to treatment for this population. It is possible that this is due to the high socioeconomic status of respondents or the severe nature of PP. Thus, further research with a more diverse sample is necessary to understand disparities in healthcare access for PP. There is little research on the efficacy of mother-baby units compared to traditional inpatient units for PP, and more information about the length of hospitalization in the context of separation from infants would be beneficial.
The large, geographically diverse sample of respondents is a strength of this analysis. The MGHP3 interview validates PP diagnoses through a structured clinical interview, which is another strength. This study also addresses topics not previously discussed in the literature. However, participants were relatively homogenous with regard to race, ethnicity, and socioeconomic status, and barriers to mental health services may differ in other countries. There may be response bias given the differences between those who responded to the survey and those who didn’t. Finally, there is potential for recall bias as many years may have passed between PP episode and survey completion.
Understanding the barriers to care and treatment experiences of individuals with PP is crucial for improving clinical practice. Enrollment in MGHP3 and completion of HAS surveys is ongoing, and the results will be continually reported.
Citation: Kobylski LA, Arakelian MH, Freeman MP, Gaw ML, Cohen LS, Vanderkruik R. Barriers to care and treatment experiences among individuals with postpartum psychosis. Arch Womens Ment Health. 2024 Feb 23. doi: 10.1007/s00737-024-01447-z. Epub ahead of print. PMID: 38396143.
Written by Peri Barest, Clinical Research Coordinator
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