By Sunny Wang, MPH, and Sarah Johanek, MPH

In 2019, 2020 Mom launched a Google form on our website titled “Share your Maternal Mental Health Story,” where pregnant and postpartum women and other birthing people answered the open-ended prompt “Tell us your story.” This was launched on TheBlueDotProject and 2020 Mom’s website, aimed at providing moms with inspiring and real messages about how hard motherhood can be and raising awareness of Maternal Mental Health Disorders (MMHDs) through social media. This online survey was disseminated to partner organizations, stakeholders in Maternal Mental Health (MMH) care, policy, and advocacy, and individuals signed up to receive 2020 Mom’s emails. This survey was advertised on TheBlueDotProject's website and social media, as well as 2020 Mom’s website and social media. There were 197 responses collected from May 2019 to October 9th, 2021.

The Methods

Over the past year, 2020 Mom worked with Sunny Wang, a recent graduate of the Master of Public Health program at the University of Washington. Sunny developed her master’s thesis around the analysis of survey results collected. The purpose of her study was to outline a set of facilitators and barriers to MMH care access and to inform national research and policy on MMHD prevention, access, and treatment. Through a qualitative analysis, Sunny identified common themes across 49 survey responses received, specifically focusing on factors that enabled or prevented individuals from accessing care in the U.S. Sunny developed codes based on recurring themes in participants’ responses in order to capture the key findings, and the data was de-identified to maintain participant anonymity.

The Findings

Facilitators to Care

There were three main factors that women reported as facilitators to receive care:

1) partner advocacy,
2) social support, and
3) prior awareness of and experience living with MMHDs.

1. For many respondents, their partner was the first person they confided in when feeling unwell, and often the first person who recommended that they seek professional care. The partner serves as an advocate in cases where the respondent does not have access to suitable treatment options, or if they are hesitant or unwilling to utilize health services. Many respondents shared how grateful they were for the emotional support of their husband or wife, and credited them for their eventual improvement and recovery.

“My husband was my biggest advocate and was relentless that I received the care I needed before and after returning home.”

2. Family members and friends were a major source of comfort for respondents, and played an important role in building a secure and supportive environment that enabled them to take the first step in seeking care. Family members were often the first to notice changes in respondents’ mental health, and would encourage them to seek professional help, or even contact health care providers on the respondents’ behalf. Many respondents also pointed to postpartum peer support groups as a safe space for sharing their struggles with MMHD without feeling shamed or judged.

“Aunt D came right out with it: ‘I think you have Postpartum Depression and you need to do something about it.’ ... someone was finally seeing that I was hurting. She thought that perhaps my PCP wasn't the right person to be treating my hormonal changes and encouraged me to talk to my OB about how I was feeling.”

3. Respondents’ prior experience with MMHDs and knowledge of psychological disorders allowed them to seek out treatment options before new onset or worsening of symptoms. Through their own research and previous exposure to MMHDs, some respondents were able to differentiate between normal pregnancy-related changes and MMHD symptoms, thus empowering them to contact health care providers and access appropriate care without delay or hesitation. As a result, many were able to recover faster from periods of feeling unwell.

“Fast forward to my third pregnancy with Josie in 2019. I was prepared. At 34 weeks I was started on an antidepressant. I must say that it has helped tremendously this time around after giving birth.”

Barriers to Care

There were three main factors that respondents reported as barriers to receiving care:

1) self-stigma and fear of judgment,
2) the health care provider’s lack of knowledge and non-specialized care for MMHDs, and
3) lack of paid maternity leave.

1. Feelings of fear, shame, embarrassment, and guilt over being perceived as a “bad mom” were common among respondents experiencing MMHDs. This cycle of negative emotions led to worsening symptoms, delays in seeking care, and slower recovery even aftercare was accessed. Many respondents engaged in “self-stigmatization” by playing down their struggles during the perinatal and postpartum period, and as a result, did not share the extent of their difficulties even when connected to a health care provider.

“My six-week appointment with my OBGYN came. I lied when she asked me how I was feeling and how my moods were. I told her I was fine. I had felt so much guilt and shame around my feelings. I thought having those feelings would mean I was a bad mother and wife. Remember that negative stigma surrounding mental health I mentioned earlier? That’s a big reason I didn’t want to admit to these feelings.”

2. Many respondents noted the lack of healthcare providers that were trained on maternal mental health. For example, some respondents with MMHDs who were seeing their primary care provider, obstetrician, or gynecologist were not receiving care related to mental health. On the other hand, respondents that were referred to psychiatrists did not receive care relevant to the perinatal period. Respondents shared how many providers failed to recognize signs of MMHDs or dismissed their mental health concerns outright. As a result, many felt isolated during the care-seeking process and discouraged from further attempting to access services. According to respondents, few providers were trained in screening for and treating MMHDs, and subsequently transferred patients out of their care, making patients feel unseen, embarrassed, and further stigmatized for living with a disorder perceived as “untreatable.”

“Through tears I said to the receptionist ‘I think I have postpartum depression.’ She forwarded my call to the nurse where she asked if I was suicidal, too embarrassed to actually admit I was, I said no ... She told me I ‘just had the baby blues’ and that was that... I cried so hard because I knew I needed help but I wasn’t getting it.”

3. A significant barrier to care access and recovery for respondents was the lack of paid time off work they received during the perinatal period. Many were concerned about being laid off, or having no source of income while taking maternity leave, and were forced to return to work shortly after giving birth to maintain their employment. Most workplaces required respondents to resume work within a few weeks postpartum, and for those struggling with MMHDs, this led to worsening symptoms, delayed care-seeking behavior, and poor recovery. Not having income or medical coverage during the perinatal period adds significant financial and psychological stress during a time when moms must focus on their own health and that of their children.

“Mommas are returning to work with a bleeding wound the size of a dinner plate because they can’t afford to stay home. Mommas are “missed” because their Medicaid ran out at eight weeks postpartum. And, Mommas are taking their own lives because they are not seen or heard.”

2020 Mom’s Policy Priorities

2020 Mom is extremely grateful for this analysis provided to guide future policies and initiatives. The following objectives are priorities for 2020 Mom in response to the highlighted barriers to care:

Awareness campaigns for women and families: Educating people and raising awareness around common symptoms associated with pregnancy are vital to decreasing the stigma around MMHDs. Many participants reported “self-stigmatization” and feelings of fear, embarrassment, and guilt over being perceived as a “bad mom.” 2020 Mom aims to increase access to educational materials and raise awareness on MMHDs through various events, blogs, webinars, and our annual forum. Through the creation of posters, flyers, and cards, 2020 Mom has compiled a page of awareness materials to help patients and customers learn more about MMH. Projects such as the Maternal Suicide Awareness Campaign, Maternal Mental Health Awareness Week, and TheBlueDotProject work to normalize the conversation around MMHDs and empower birthing people to be open about their symptoms.
Training for healthcare providers: Many participants shared how their providers failed to recognize signs of MMHDs or dismissed their mental health concerns outright. While providing patients with educational materials and destigmatizing MMHDs are important, these methods are not successful if patients do not have access to trained providers and patient-centered care. In order to effectively treat MMHDs, providers need to accurately diagnose them through regular screenings and follow-up referrals. 2020 Mom partnered with Postpartum Support International to develop the Maternal Mental Health Certificate Training for Mental Health and Clinical Professionals. This online training webinar aims to address the gap in provider training that many respondents reported as a major barrier to accessing care. Additionally, 2020 Mom’s strategic plan for 2022-2025 focuses on increasing the range of qualified MMH providers, adopting a standard protocol for obstetric providers to screen for MMHDs, and promoting payment reform to support mental health integration in obstetric/primary care settings.
Paid family leave: One in four people return to work within ten days of giving birth, and 30% leave their job after giving birth. The U.S. is the only country among 41 developed nations that does not mandate any paid leave for all new parents. The federal Family and Medical Leave Act provides eligible employees with 12 weeks of leave after the birth of a child but is not feasible for many people because the leave can be unpaid. States that have mandated paid leave programs have demonstrated the positive effects on MMH by decreasing depression and increasing the physical health status of mothers and babies. 2020 Mom supports a national paid family and medical leave program to provide comprehensive paid leave to all workers and will continue to bring such advocacy opportunities to the field.