Women of Color and Maternal Mental Health: Why Are We So Underserved?

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women of color maternal mental healthOver the past year, I’ve made it a point in my advocacy efforts to focus more on women of color, talking with them about their mental health experiences during pregnancy and the postpartum period. Based on those conversations and my own personal experience, I’ve become especially interested in how perinatal mood disorders and their symptoms impact and manifest in our lives, what culturally specific barriers to support and treatment we encounter, and what mental health advocacy efforts are being made to remove those barriers for us. Here’s what I’ve learned from research, Postpartum Progress’ current survey on mothers of color and their experience with perinatal mental health, conversations I’ve had with fellow mothers of color, and from what I’ve seen in the mental health advocacy space.

 

  • We are woefully underserved by mental health professionals and social services that reside in our communities-for a variety of reasons. Many of the women I spoke to were dismissed, rebuffed, or had their mental health concerns during pregnancy and the postpartum period downplayed by their doctor, pediatrician, pastor, and/or social worker.
  • Women of color are either without health insurance, or have insurance plans that do not cover mental health services, especially during pregnancy. Medicaid, for example, often lapses in many states six weeks after pregnancy, leaving many without continued coverage and access to mental health care.
  • We are not informed or aware of what places us at a particular risk for developing one of these illnesses compared to Whites.
  • We simply aren’t aware of the symptoms of perinatal mood disorders.
  • Stigma around mental illness is prevalent in our cultures but this is especially true when it comes to motherhood. Our cultures place a significant emphasis on us being silent about our struggles, taking care of everyone else before ourselves, turning to religion in an effort to overcome, and on being strong in the face of adversity-particularly in the face of oppression, racism and other socioeconomic stressors. Seeking the help of a professional, and disclosing our symptoms is seen as a sign of weakness so much so that we ignore the need to make our mental health a priority. Health advocacy efforts focus solely on physical illnesses such as diabetes, heart disease, stroke, infant mortality, and cultural disparities in breastfeeding rates. The latest statistics show that women of color and those living at or below the poverty line have a higher rate of occurrence, yet none of the national organizations dedicated to empowering and serving minorities discuss maternal mental health and the disparities that exist in regards to diagnosis, support, and treatment. This is preposterous and negligent considering our rate of occurrence is 1 in 4.
  • Our reasons for not discussing it publicly are a significant barrier to raising awareness and seeking treatment. We face racial and gender discrimination in our places of employment so as you can imagine, disclosure of a postpartum mood disorder can increase the risk of losing our jobs significantly. Many of the women I’ve spoken with have expressed this fear, with several stating it was the sole reason they didn’t seek treatment either during pregnancy or when their symptoms peaked during their child’s first year. Support from family and friends is often minimal due to culture specific stigma and ignorance surrounding mental illness. Many of us living at the poverty line or who are in the lower-income bracket utilize the help of social services such as SNAP, WIC, and TANF; speaking from personal experience, I can say being under scrutiny from social workers and the state triggers fears of losing your children for being seen as unfit to care for them.
  • Lack of research. I’ve grown incredibly frustrated in my efforts to find consistent research on this issue because, quite frankly, it’s pretty scant. Most of the research that focuses solely on women of color and perinatal mental health is also out of date, with data from the late 90’s and early 2000’s.
  • Lack of targeted advocacy. We do not see women who look like us in literature doctor’s offices, or on websites that talk about perinatal mental health. There are very few if any advocacy campaigns or outreach targeted specifically towards us, like there are for other health issues and breastfeeding. Advocacy organizations often focus on minority mental health only during designated months once or twice a year, instead of on a consistent basis. Many organizations simply focus on all pregnant and new mothers, which is fine, but such a general scope ignores our unique experiences with mental health. Our disparities in support and treatment due to socioeconomic stressors, our particular needs, the risk factors we face, as well as the role culturally specific stigma plays as a barrier are not taken into consideration when calls to action are given. They are mentioned as an afterthought, a sentence or two in a post or article. The results of such inattentiveness are programs and initiatives that are not inclusive of our unique needs. Finally, we lack support groups in our own communities as well as safe spaces online to talk with other women like us who understand our unique struggles as mothers, which for many of us creates a very isolated existence.

This has to change. It’s unacceptable and as a woman of color and survivor of postpartum depression and anxiety, it hurts my heart to know our maternal mental health isn’t being actively prioritized, much less thought of.  While I fully understand that postpartum mood disorders don’t discriminate in terms of who they impact, and that the need to help pregnant and new moms is great all across the board, I also know that efforts are seriously lagging behind when it comes to the maternal mental health of women of color. We MUST do better. Later this week, I will talk about how we can but for now, I’m interested to hear your thoughts. Mothers of color, what has your experience been, and what kinds of supports and programs do you think would serve us better? What kind of improvements would YOU like to see?

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Should New ICD-10 Code Reference Puerperal Psychosis?

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Doctors At The General AssemblyA recent blog post at Supercoder exclaims there will be a new code for Postpartum Depression in the ICD-10. What’s the ICD? The ICD ” is the standard diagnostic tool for epidemiology, health management and clinical purposes, according to WHO. This includes the analysis of the general health situation of population groups.” In simple terms, the ICD is where codes for diagnoses and treatment are found and then used by doctors for your charts and for insurance purposes. Of course, it is also used for research and tracking purposes as well (epidemiology).

One would think this is good news as it changes the convolutions from the ICD-9 and simplifies it into one code. But in my personal opinion, this is not a good step for anyone. Why not?

Because, according to the blog post at Supercoder, this new code will reflect a diagnosis of Postpartum Depression as Puerperal Psychosis. What’s the ONE thing we always, always, always cry from the rooftops?

Yup.

POSTPARTUM DEPRESSION IS NOT PSYCHOSIS.

And yet, in the new version of the diagnostic bible for medical professionals, postpartum depression will indeed, become psychosis.

Why the change?

According to Medicaid’s page regarding the switch from ICD-9 to ICD-10, “The ICD-10 code set is much better at describing the current practice of medicine, and has the flexibility to adapt as medicine changes.”

In my humble, non-professional, survivor opinion, this is not a move forward. Instead, this is a step back. We have fought so very hard to differentiate postpartum depression from psychosis. For women, it is an important distinction to make when seeking help. With media sensationalism, the cases the public hears about are rooted in psychosis but often referred to as postpartum depression. This is makes the need to differentiate between psychosis and depression urgent. Women and their loved ones need to be reassured that not all cases of Perinatal Mood Disorders are psychosis. In fact, Psychosis is extremely rare and doesn’t always end in death despite carrying the highest risk for both infanticide and suicide.

In reading the code information page at the ICD-10 website, postpartum depression is mentioned and explained in detail. It’s done quite well, actually. However, the fact remains that the leading words are “puerperal psychosis.”

According to Wikipedia, the definition of “Puerperal Psychosis” is “a term that covers a group of mental illnesses with the sudden onset of psychotic symptoms following childbirth. A typical example is for a woman to become irritable, have extreme mood swings and hallucinations, and possibly need psychiatric hospitalization.” While this does indeed describe Perinatal Mood & Anxiety Disorders, emphasis must be placed upon the fact that psychotic symptoms are not part of all of those diagnoses found under the Perinatal Mood & Anxiety Disorder umbrella. Only one – Psychosis, involves psychotic symptoms.

I did not struggle with Psychosis but rather with Obsessive Compulsive Disorder. I experienced a near-psychotic break as a result of a negative reaction to medication but it resolved once my medication changed. (This is why it is so important to communicate with your physician about any changes in behavior while on any psychiatric medicine).

While I appreciate the effort to simplify the coding for Perinatal Mood & Anxiety Disorders, the road this starts us down does not seem to clarify much of anything for women, for doctors, or for the media. The results of this change may prove to be a further hindrance to treatment and increase sensationalism with rare cases ending in infanticide and suicide. Imagine a young mother in a room with an untrained physician being informed that she’s just scored positive on the Edinburgh Postnatal Depression Scale and with this diagnosis of Puerperal Psychosis, she’ll need medication, etc. One would hope physicians would be better but there’s always the what if…the what if that I hear all too much from mothers who have experienced the untrained doctors. Perhaps this is what frightens me most.

I would love to hear the opinion of others regarding this change to the coding for Perinatal Mood & Anxiety Disorders. Do you think it’s a step in the right direction? Or do you see it as a hindrance to treatment and outreach? Codes are so rarely discussed publicly so perhaps it won’t matter in the grand scheme and I’m over-reacting. But in a world where labels matter (and they do, in the Perinatal Mood & Anxiety Disorder world), this, in my personal opinion, only ends in a huge leap backward.

Chime in below with thoughts and questions.

(photo credit: “Doctors At General Assembly”, Waldo Jaquith @flickr)

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Perinatal Mental Health Hero

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Perinatal Mental Health Hero

I recently was introduced to a Labor & Delivery nurse who is making a huge impact on the state of perinatal mental health care pathways. I could feel the passion come through in her voice as we spoke a few weeks ago on the phone for nearly two hours about what she was doing to raise awareness and increase access to quality care in our local area (Washington, DC metro area) for women who desperately need it.

I asked Kisha to share her story in a few paragraphs, and this is what she sent me to share with you:

“I grew up in the small southern town of Crowley, Louisiana. After graduating High School, I enlisted in the Coast Guard to see the world. I was stationed in Hawaii for 3 years at a small boat station, then became a USCG Dental Technician Petty Officer 3rd Class. My final duty station was at the Department of Transportation in Washington, DC. Prior to leaving the USCG, I became a Massage Therapist. It was during my 5 year stint as a Massage Therapist, that I rediscovered my heart for nursing. I graduated college, became a Registered Nurse, and a mom at 30 years old. After working as a Mother-Baby and Pediatric RN, I took a chance on Labor & Delivery and found my niche in nursing!  Eight years later, I am still working as a full-time night shift L&D RN.

Being a Labor & Delivery RN is one of the most exhilarating & frustrating experiences. Over the years, I have gained invaluable frontline skills, instincts, and knowledge about calming a woman’s fear in the throes of labor and empowering her to embrace motherhood. I am proud of these abilities and love sharing the birth experience with women and their families, but in all honesty the realization of perinatal mood and anxiety disorders (PMADs) prevalence among mothers and its detrimental impact on families has dramatically shifted my perception and purpose. My heart breaks knowing that over 8 years and countless births, 1 in 7 of those pregnant women and new mothers that I cared for inevitably went home suffering in silence from a PMAD. Maybe some of them already knew they were high risk and had support in place, but for many they went home with an infant and the expectation that their mental health was secondary in motherhood. As I continue to bear witness to the subtle shifts that seem ‘normal’ after childbirth (lack of sleep, lack of self-care, lack of support) that directly contributes to this needless suffering, I have found my life’s work is to destigmatize PMADs, while alleviating the unnecessary suffering of these women and their families.

As a frontline nurse, I believe that we as a profession are key to a long overdue paradigm shift in perinatal mental health. We are well-positioned and equipped to assess the mental health of pregnant women and mothers in the acute care setting, provide them with the first aid emotional support they need, and connect them to the appropriate perinatal mental healthcare providers and resources in their community.”Kisha Semenuk is a mama to two young boys. And as a night shift nurse who recently obtained her Masters of Science in Nursing, Kisha completed her Nursing Capstone Project on the knowledge gap she identified when researching perinatal mood and anxiety disorders and effective postpartum depression screening using the Edinburgh Postnatal Depression Scale (EPDS) among frontline perinatal care providers (OBs,Perinatal RNs, & Mother-Baby RNs).Through her deeper research, Kisha became acutely aware that as a frontline RN she was bearing witness to the silent suffering of so many women and families. Nothing was being done about it on the frontline and Kisha wanted to take action to make lifesaving changes.

She began actively networking with frontline OBs and built a team of fellow perinatal mental health champions who helped her to compile and organize an online resource which will allow women and their families to easily locate specialized, local professionals, support groups and treatment facilities. This resource will be kept at the fingertips of frontline nurses who are often the first healthcare professional to recognize the emergence of a perinatal mood disorder.Kisha’s mission with the DMV (DC-Maryland-VA) Perinatal Mental Health Resource Guide is to develop, disseminate, and maintain a comprehensive, up-to-date, regional directory of specialized mental health providers, support groups, advocacy organizations, and other relevant clinical resources pertaining to perinatal mental health. This directory will assist providers, patients, and their families with obtaining specialized mental health evaluation and treatment during pregnancy and postpartum.

How amazing would it be if we could create a guide like this for every city in our country? I am so energized and extremely appreciative of all the blood, sweat and tears she has poured into this project and I cannot wait to see it take off and bring help and relief to so many families who in the past did not know where to turn.

I applaud Kisha’s dedication and drive for instituting change in an area all of us here at Postpartum Progress care deeply about.

{The DC-MD-VA (DMV) Perinatal Mental Health (PMH) Resource Guide is launching online by November 1 and is a result of an ongoing collaboration between the DMV PMH Resource Guide Team and existing DMV-based PMH Professionals and Perinatal Mood and Anxiety Disorders (PMADs) survivor support network. Team members include: Kisha Semenuk, L&D RN and MSN; Aimee Danielson, Director of MedStar’s Georgetown University Hospital Women’s Mental Health Program; Lynne McIntyre, the Mid-Atlantic Postpartum Support International Coordinator/Mary’s Center Maternal Mental Health Program Coordinator; Helen Conway, Psychology Major (C’15) Summer Intern; and Dina Karellas, L&D RN and Nurse Informatics Graduate Student; in addition to Adrienne Griffen, Founder of Postpartum Support Virginia (PSVa), and Nadia Monroe, Founder of Postpartum Support Maryland (PSMd).}

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