Qualitative research on postpartum psychosis (PP) — a severe psychiatric illness that occurs in 1 to 2 per 1000 people during the perinatal period — is limited. Qualitative methods capture patients’ perspectives in their own words and can help fill in key gaps about precipitating factors to PP, treatment preferences, and experiences with care in this population.
Past qualitative literature on PP has focused on treatment experiences and the impact of PP on family members. These studies have identified that adequate sleep, social and clinical support, and regular follow-up visits are important to the recovery process for PP. Infants are also central to patients’ recovery either as barriers to external help or facilitators of emotional wellbeing. Other studies have found that patients want both formal support systems from their providers and informal peer support networks. However, much of this literature comes from small samples of less than 13 women. These studies are often limited to specific geographic locations or treatment programs. This study builds on previous qualitative work to understand the lived experiences of a large, international sample of PP survivors and inform future clinical care and research in this area.
The Massachusetts General Hospital Postpartum Psychosis Project (MGH P3) was established in 2018 to better understand patient experiences of PP. Participants in MGHP3 complete a one-time approximately 90-minute phone interview, during which data on demographics, family history, medical and psychiatric history, and psychiatric treatment are collected. Since 2020, participants have been asked to share a narrative of their PP episode in response to the question “How would you describe the narrative of your postpartum psychosis?” during the phone interview. A content analysis of these responses identified major themes in the lived experiences of people with PP.
As of November 1, 2022, 130 individuals were asked to describe their PP narratives from 133 episodes of PP. Experiences of PP fell into four categories: 1) broad psychosocial experiences surrounding postpartum psychosis, 2) impact on mother-baby dyad, 3) treatment experiences, and 4) recovery experiences. Themes related to clinical symptoms were identified and will be reported separately.
Broad psychosocial experiences
Participants often noted elevated stress proximate to their PP episode, specifically stress related to family or relationships, work or financial concerns, grief or loss, the COVID-19 pandemic, or pregnancy. Participants also highlighted the role of social support in shaping their recovery. Having social support positively impacted access to treatment and recovery, while lacking social support negatively impacted these factors. Participants also noted that stigma and lack of relevant knowledge about mental health, and postpartum psychosis specifically, were barriers to seeking treatment.
Impact on mother-baby dyad
PP episodes impacted the mother-baby dyad in multiple ways. First, participants noted how maternal thoughts and behaviors were affected by the psychotic episode, including fear for their infant’s wellbeing and thoughts of harming their baby (which participants reported were very distressing). Second, PP was a barrier to participants’ connection with their infant at both the individual level (psychiatric symptoms) and system level (separation during hospitalization). Finally, participants frequently reported that breastfeeding practices were distressing at both the individual (difficulty breastfeeding) and system levels (lack of support for breastfeeding in the inpatient setting).
Treatment experiences
Patients shared positive and negative experiences with the healthcare system. While some providers were supportive and helpful, others were unkind or unknowledgeable in treating PP. The same was true for medication and therapy. Some participants felt that medication helped them feel well and found therapy beneficial. Others were fearful of starting medications or never found the optimal treatment to improve their symptoms. Group therapy was challenging for some patients who had difficulty relating to others who hadn't experienced PP. Experiences with inpatient hospitalization and crisis response teams were almost always negative. Participants often felt that facilities were “scary” and isolated them from family, friends, and their infants. Lastly, participants noted that police, emergency medical technicians, and emergency room clinicians had limited knowledge of postpartum care and dismissed their concerns.
Recovery experiences
Recovery from PP influenced family dynamics, including family and relationship strain depending on the length of the episode. Participants’ decisions about future pregnancies varied, with some feeling discouraged from having additional children and others feeling motivated to prepare for future pregnancies. Some participants faced legal involvement during their recoveries. Returning to work was often challenging after PP episodes, although in some cases it was a positive experience. While the psychotic episode may have resolved, many participants reported facing ongoing mental health challenges and that it took a long time to feel “back to baseline.”
The large, geographically diverse sample is a strength of this study (participants hailed from 5 countries, 33 states, and Washington D.C.). Moreover, the exploratory focus identified a range of topics relevant to people who experienced PP, whereas previous qualitative research had a narrower focus. Additionally, MGHP3 confirmed a PP diagnosis using a structured clinical interview, while much of the previous literature used self-report. Despite the geographic diversity, this study had limited racial and ethnic diversity. Most participants were white, highly educated, had private insurance, and were employed during the perinatal period. Our sample was also mainly U.S.-based, so our findings may or may not apply outside the U.S. Also, responses were collected as summarized notes, not recorded, and there is potential for recall bias as participants could enroll up to 10 years postpartum.
Overall, this study highlights the complex range of experiences associated with postpartum psychosis. Our findings indicate a wide scope of future research and clinical directions to improve the identification and treatment of PP. The findings regarding treatment experiences identify opportunities to improve access to, and quality of, care for patients, including, but not limited to broader knowledge among medical professionals regarding symptoms in the postpartum. Findings regarding the mother-baby dyad highlight the need for perinatal-specific services/interventions that support the dyad relationship in the context of the PP episode. And because recovery can be long and challenging on multiple levels for individuals and their families, it is important to have long-term wraparound support for the entire family unit that extends beyond the acute episode to promote return to wellness. Qualitative exploration of these topics will help to lay a foundation for future research and clinical work to address these areas in a way that is patient-centered and focuses on issues identified directly by survivors with lived experiences.
Citation: Vanderkruik R, Kobylski LA, Dunk MM, Arakelian MH, Gaw ML, Dineen H, Kanamori M, Freeman MP, Cohen LS. The lived experiences of individuals with postpartum psychosis: A qualitative analysis. J Affect Disord. 2024 Mar 1;348:367-377. doi: 10.1016/j.jad.2023.12.069. Epub 2023 Dec 29. PMID: 38160890.
Written by Peri Barest, Clinical Research Coordinator
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