An Introduction to Sepsis Survivors Week

Sepsis Survivors Week is in two weeks. Let’s create an environment where sepsis is caught before the downstream impact can occur.

Posted under: Maternal Health, Quality of Care

On the day I was supposed to be discharged from the hospital, I began to feel sick. I began to experience fever, chills, overall feeling of weakness, became short of breath, and felt like my heart was racing. I told my doctors all of my symptoms, but was quickly brushed off and was told that I was likely “just anxious about being a new mother.” Some tests were run and my White Blood Cell (WBC) count was higher than the previous tests, but again I was brushed off and told, “An elevated WBC count is normal after child birth.” April Chavez, in April Chavez, Survived Sepsis

In two weeks, Sepsis Survivors Week will kick off and there will be stories of women, patients, and families who have been impacted by sepsis during pregnancy and after delivery. NPIC will share some of those here, but it is important to highlight a few items before we get there that deserve our attention now.

Normalization of Deviance
About three weeks ago, I blogged about the Normalization of Deviance and it became NPICs highest viewed blog. Why? Because every healthcare provider has experienced it in one way or another. At one level or another. And we are all seeking solutions.

Symptoms brushed off as “just anxious about being a mother?” Check the Normalization of Deviance box. (And a few other boxes too, but that’s another blog).

White blood cell count elevated with symptoms? “An elevated white blood cell count is normal after childbirth.” This one should be easy…the term “normal” was tossed in there to normalize the symptoms and findings (you guessed it…check that box again).

So How Do We Un-Normalize Symptoms of Sepsis in Pregnancy?
There is a challenge to sepsis in that in many ways it can different from other risks to pregnant and postpartum patients. Postpartum Hemorrhage? You can quantify (or should quantify) blood loss. Severe hypertension? Preeclampsia? Blood pressure, swelling, edema. Sepsis is a bit more insidious. The World Health Organization defines maternal sepsis as a life-threatening condition defined as organ dysfunction resulting from infection during pregnancy, childbirth, post-abortion, or the postpartum period (up to 42 days). What I am describing above are the symptoms that lead to sepsis, and how we as healthcare providers can break the chain and halt the progression of sepsis in its tracks.

Swiss Cheese Model and Near Miss/Error


If you have ever taken a TeamSTEPPS or other course in patient safety or risk management, invariably you will be introduced to the "Swiss Cheese Model” of patient error prevention. In essence, all of the holes line up perfectly to allow for an error or event to occur. Recognition of signs and symptoms of infection that lead to sepsis is the first step. Let’s use April’s story and sepsis recognition as an example:

Hole 1: Fever, chills, weakness, racing heartbeat/Dismissed

Hole 2: Shivering from fever/Dismissed (and thermostat of room turned up to provide warmth)

Hole 3: Symptoms continued/“New mom anxiety” and prescribed an anti-anxiolytic (symptoms dismissed)

How many more holes needed to be passed through? NONE. There were too many already! How many team members did not think to signal to someone that this was not normal? That these symptoms should be addressed?

AIM Sepsis in Obstetric Care Bundle
In 2022, the Alliance for Innovation on Maternal Health (AIM) launched the Sepsis in Obstetric Care Bundle. This patient care bundle provides teams the tools and elements needed to ensure consistent, standardized communication and care to prevent the downstream effects of infection and sepsis. Every hospital should be implementing this patient care bundle and readying their teams to be aware of the signs and symptoms of infection and sepsis.

There are a few key takeaways from this bundle:
  1. Readiness: Create a culture that utilizes non-hierarchical communication so that all team members, including the patient, feel empowered to speak up about a concern and know that their input is valued by the entire care team. We can educate all day long. But that education means nothing if teams will not listen to the patient and their concerns about new symptoms.

  2. Recognition and prevention: Provide patient education focused on general life-threatening pregnancy and postpartum complications and early warning signs, including sepsis signs and symptoms other than fever, and instructions for whom to notify with concerns. Ditto.

  3. Response: Initiate facility-wide standard protocols and policies for assessment, treatment, and escalation of care for people with suspected or confirmed obstetric sepsis. If you have only prepared your obstetric departments to respond to infection or sepsis in an obstetric patient, your chain of survival is already broken.

  4. Reporting/Systems Learning: Conduct multidisciplinary reviews for systems improvement of each sepsis case to assess the screening program, the quality of care provided to patients with sepsis, and whether instances of bias may have impacted care.

  5. Respectful/Equitable Care: Because maternal mortality and severe maternal morbidity related to sepsis disproportionately affect Black, Indigenous, and Hispanic people because of systemic racism, but not race itself, it is necessary to mitigate this bias by having a high index of suspicion for sepsis.
So, let’s un-normalize our response to infection and sepsis. And yes, I get it…many things may “look” like infection. In many instances, sepsis may require a differential diagnosis and other symptoms to recognize. But it is important to recognize them and not dismiss them.

Let’s ensure a culture and environment in which many more patients with sepsis survive. Better yet, let’s create an environment where sepsis is caught before the downstream impact can occur. Learn more about sepsis at https://www.sepsis.org/ and share your own experiences about sepsis and the care of patients who have survived during Sepsis Survivors Week.


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Normalization of Deviance—Part 2

Behaviors and actions that would normally be condemned have become normalized and excused. Behaviors that create a ripe environment for errors and patient harm are not addressed. This is normalization of deviance.

Posted under: Other, Quality of Care

Last week, I blogged about a topic that is very important to me, and quite frankly, is a key driver for NPIC membership—Normalization of Deviance.

It would seem that this topic is of great interest to many in the healthcare community. Within days, this blog has been viewed hundreds of times and generated a great deal of discussion, particularly surrounding bullying, “bad behavior,” and “behavior that is tolerated due to ‘expertise.’” I received multiple direct messages on LinkedIn, and thought I would share some overarching themes (changed a bit to protect individuals) and thoughts for the future:

“Turnover among the staff is so high. Preceptors are tired, the staff is tired, and no one seems to notice. There seems to be new staff all of the time, policies seem to get updated every other day, and teams can’t keep up.”

“Over time, [they] have reduced staffing numbers to a point that is no longer safe. Caring for two (2) patients in active labor has become the norm and not the exception.”

“Poor behavior is excused because someone is considered a clinical ‘expert’—their skills make up for their behavior.”

“’They have always acted that way’. People report the behavior but nothing is ever done. The culture of the unit is in peril, but nothing seems to change. We’ve simply gotten used to it over time.”

So, while most of the literature surrounding the Normalization of Deviance is focused on systems and processes, perhaps it is time to also devote as much energy towards actions (and inactions) over time that left unchecked create stressors and moral injury to those working within healthcare.

What many of these individuals describe are behaviors and actions that have been “normalized” and accepted behaviors that create negativity, isolation, and feelings of frustration, apathy, and complacency.

There is a multitude of studies, commentaries, and other media that relay the issues that exist within toxic work environments. Spend a day on social media, and it becomes increasingly concerning the sheer magnitude of this issue. And the turnover it creates, perpetuating the continued cycle of frustration, apathy, and complacency.

It is time that this issue is labeled for what it truly is…normalization of deviance. Behaviors and actions that would normally be condemned have become normalized and excused. Behaviors that create a ripe environment for errors and patient harm are not addressed. Accepting what was once unacceptable. Remember the discussion of the Shuttle Challenger disaster last week when introducing the concept of Normalization of Deviance? Rank and seniority became more important than expertise. Aerospace engineers found themselves having to prove harm rather than relying on their knowledge and expertise to avoid harm in the first place (When Doing Wrong Feels So Right: Normalization of Deviance - PubMed (nih.gov)).

What if your teams treated the management of deviant behaviors a risk management issue? A risk mitigation issue? Would you handle deviant behavior differently if it was handled as a threat to patient safety? Would you handle staffing shortages differently? Accepting what was once unacceptable?

Call intimidation and bullying in perinatal care what they are…normalization of deviance. Accepting what was once unacceptable.

So, how do we break the cycle? How do we move beyond accepting poor behavior and moving towards a more civil and collegial work environment? How do we ensure that we are providing an environment that is both patient AND staff centered and focused?
  1. Culture comes from the top: Does your Board of Directors/Trustees know what Normalization of Deviance is? And the real risks it presents to patients? Teams? Organizations? Strategy?
  2. If your organization has not reviewed the Shuttle Challenger disaster proceedings and report, I strongly recommend its use in risk mitigation. There are excellent lessons about how people and processes allowed for the movement of the unacceptable to the acceptable. Some of these changes took time. Others were quick and unrecognized.
  3. Create an organization that does not stigmatize event reporting or near-miss reporting. Does your organization classify intimidation or bullying as a near-miss? If not, why not?
Let’s end this on a positive note. There are many hospitals and healthcare organizations that have prioritized eliminating the normalization of deviance and created risk reduction programs that connect all team members to a common goal and purpose: elevate patient care AND team cohesion. While the space shuttle program IS rocket science, creating positive, enriching work environments is not.

Make 2023 the year where normalization of deviance IS normalized in our conversations, and eventually eliminated as a threat to patient safety.


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The Normalization of Deviance and Maternal Health Outcomes

There are a few terms that are used throughout healthcare quality improvement: Cognitive bias, confirmation bias, and normalization of deviance (NoD). What is normalization of deviance and what impact does it have on maternal health outcomes?

Posted under: Maternal Health, Other, Quality of Care

Healthcare workers, including providers, nurses, respiratory and occupational therapists, and so many others, enter healthcare to make a difference for patients, and their communities, and (let’s face it), create a sustainable livelihood and career.

At the end of the day, there is the desire to support individuals and communities from illness to wellness, and more recently, to support prevention efforts to avoid illness in the first place. The issues surrounding maternal health have accelerated in the past decade, particularly with the launch of the 2017 NPR/ProPublica Lost Mothers Series. Some would say that it was this work of journalism that catapulted maternal health to the discussion it is today. Not only did the journalists show the stark data on maternal deaths and mortality, but they showed the faces of those women who died and told their stories, which created (and quite frankly forced) the discussion of maternal health into the public domain. In addition, these stories also began to illuminate the stark inequities that exist, including the rates of death of Black and Brown women when compared to white women (3-4 times, and even today that data is dismissed).

Since then, a great deal of emphasis has evolved into discussions of maternal morbidity and mortality.

There are a few terms that are used throughout healthcare quality improvement: Cognitive bias, confirmation bias, and normalization of deviance (NoD) (there are others, but the focus here will be on NoD).

Cognitive bias was first described in the 1970s, as human behaviors that simplify situations that can seem complicated or uncertain. Confirmation bias is the process of only accepting data that is consistent with preconceived ideas, opinions, or thoughts. Normalization of deviance is the acceptance, over time, of processes and solutions that are broken or defective, and essentially, “normalize” poor outcomes and/or performance.

Normalization of Deviance is a term that originated with the Shuttle Challenger disaster in 1986. Sociologist Diane Vaughn described the process as “people within the organization became so accustomed to a deviation that they don’t consider it as deviant, despite the fact that they far exceed their own rules for elementary safety.” When Doing Wrong Feels So Right: Normalization of Deviance - PubMed (nih.gov)

So, what is the Normalization of Deviance:
  • Gradual reduction of safety standards (to a new normal) after an absence of negative outcomes, which reinforces the “Band-Aids” of workarounds, shortcuts, and other changes to processes when sustainable solutions are not available. Normalization of Deviance: Concept Analysis - PubMed (nih.gov)
  • Has the potential to exist in EVERY healthcare environment if left unchecked.
  • Requires just the right combination of exhaustion and frustration when processes are broken, which lead to workarounds, shortcuts, and “MacGyver” type fixes.
What Normalization of Deviance is NOT:
  • An individual issue. This type of behavior and reaction is a systemic issue and takes time to fester and grow. While each individual is responsible for the care of a patient or community, the “snowball effect” of individual responses creates a more global (and more dangerous) situation.
So, how does the Normalization of Deviance connect to maternal safety?

The latest Centers for Disease Control Report of Maternal Mortality Review Committees outlined the most recent maternal death data. Of the maternal deaths, 13% occurred on the day of delivery. While many programs focus on postpartum care in the community, between 6 weeks through 1 year postpartum (and beyond), we cannot overlook the importance of elevating care during the immediate labor/delivery/postpartum period which includes teams that rely on one another for the provision of high-quality care.

Dr. Christine Morton in 2014 described the issue surrounding the normalization of deviance in maternal health as the intersection of assuming childbirth to be risk-free and inherently risky, and clinicians not understanding practice patterns and maternal outcomes data tracking (Morton, C. (2014). The problem of increasing maternal morbidity: Integrating normality and risk in maternity care in the United States. Birth, 41(2)). While data capture and evaluation have improved since 2014, many of these same issues still exist in 2023.

States that are currently working through the AIM Safe Reduction of Primary Cesarean Birth Bundle know the normalization of deviance far too well. If your cesarean section rate is above 50%, you have probably heard the following statements:

“Our patients are sicker.”
“Our patients are older.”
“Our patients have more comorbidities.”
“Our patients _______________
(you fill in the blank).”

Don’t get me wrong…there are very specific indications why a cesarean section should occur. Cesarean birth can save the life of the mother, baby, or both.

But when cesarean section becomes the normal route of delivery and not the exception, fostering and supporting an intended vaginal birth can almost seem like a “workaround.”

Think about the care processes you have “normalized” that are anything but normal:
  • Vital signs in delivering women (“She has a higher heart rate because she is pregnant, no reason for worry”).
  • Setting alarm parameters just a “bit higher” than normal.
  • Dismissing data outcomes because you know your “patients are sicker than that” (and they might be…but the data you enter and validate is the data that comes out).
If you are not comfortable with the term Normalization of Deviance, that is okay. But it is a term that your unit and hospital should embrace and explore what “normalizations” your teams have created…they are there, but it takes courage, curiosity, and transparency to find them and to create a true culture of patient AND staff safety.

One of the primary reasons hospitals reach out to NPIC is to benchmark themselves against similar size hospitals, birth volumes, payers, and acuities. Your data is your data, and easy enough to track (potential confirmation bias). When you compare your data to another group of facilities much like yours, the difference may be minimal or may be significant, and variations in practice patterns may emerge.

Transparency and a true culture of safety that openly supports the identification of shortcuts, workarounds, errors, and near-misses is the only culture that will stall and eliminate the Normalization of Deviance.

The National Perinatal Information Center (NPIC) provides maternal and newborn data reporting and analytics for hospitals across the US. With the most robust and longest-tenured linked mother/baby database in the nation, NPIC has partnered with hospitals to offer better insights into their data and practice patterns. Those conversations have evolved into understanding how data comparison and benchmarking can support internal quality improvement programs and reduce the normalization of deviance in outcomes. If you would like information on building a more resilient maternal and newborn quality improvement program, contact NPIC at inquiry@npic.org.
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Setting Up Your Unmet Social Needs Programs for 2023

In April 2022, CMS proposed three (3) new social determinants of health measures that will go into effect in January 2023. Identifying unmet social needs will not only be a hospital priority but a community priority and a patient priority as well.

Posted under: Maternal Health, Quality of Care, Social Determinants of Health/Disparities

With the impending 2023 launch of the Centers for Medicare and Medicaid Services Health Equity Measure, the National Perinatal Information Center has been receiving an increased number of questions related to this new measure, and what it means for inpatient hospital care.

Maternal health takes center stage within these new CMS recommendations. I encourage you to review the proposed policies and get to know them. They are coming to a hospital near you in 2023.

In April 2022, CMS proposed three (3) new social determinants of health measures that will go into effect in January 2023. Identifying unmet social needs is a critical component of inpatient care, but it goes beyond that. Identifying unmet social needs will not only be a hospital priority but a community priority and a patient priority as well.



One of the CMS pillars within this new Health Equity Measure is for hospitals to attest that Health Equity is a strategic priority. Many of us in population health and data science focus in on the racial and ethnic disparities within maternal health, as we should. The disparities found that impact Black and African American women are wholly unacceptable, and efforts must be made to achieve birth outcome equity.

Health disparities as a concept must embrace the multitudes of inequity that exist within healthcare today. And many of those exist due to implicit bias that wanders its way, whether intentionally or unintentionally, into patient care.

Think about the patients that you come into contact with in maternal care. When you admit a patient, and you begin asking personal questions, how do you think patients feel? How would you feel? Now, imagine you have significant unmet social needs, and are being asked probing questions…

Now think about being asked questions about your home situation. Are you homeless? Do you have reliable transportation? Or the last time you missed a utility bill? Or missed a day’s worth of meals because you couldn’t afford food? Or if you feel safe at home? Or if you have a disability you would like to disclose?

Do you think women, do you think patients, feel comfortable answering these questions? Do you think there is fear of disclosing a need such as homelessness with a new baby? Or food insecurity?

Kristin Tully and colleagues at the University of North Carolina Chapel-Hill published an outstanding paper, Screening and Referral for Social Determinants of Health: Maternity Patient and Health Care Team Perspectives, that every healthcare team member should read. I’ll offer a few key takeaways:
  1. Patients that participated in interviews wanted to know how their data would be used, how it would be stored, and who would see it. Do you and our care teams have answers to those questions?
  2. Could those same disclosures create situations whereby a parent was considered “unfit” based on answers to those questions?
  3. Have you included your Patient Advisory Teams on your Health Equity Strategic Plan? Have you included patient advocates on developing your unmet social needs strategy? If not, you have missed a critical partner in the development of your program.
We focus so much on ensuring that our teams are trained on culturally-sensitive ways of asking about unmet social needs. We also need to focus on the patients we are working with and supporting. Data ethics also needs to be considered, and how we use sensitive data that is shared with us must be managed effectively and proactively. At the same time, DO NOT screen for unmet social needs if you have no plan in place for referrals.

One of the requirements of the new CMS Health Equity Measure is that hospitals are partnering with community organizations to better support patients and their families for unmet social needs. If you have not yet partnered with your community organizations, or have established a plan to do so, you are falling far behind. These community organizations can be outstanding sources of truth and experience in providing support to patients and families. Perinatal Quality Collaboratives are excellent resources for gathering information on key patient advocates and community resources.

NPIC is committed to supporting hospitals across the United States in creating and launching their Health Equity Strategic Plan. If you are seeking a way forward, NPIC can help. Feel free to reach out to Elizabeth.Rochin@npic.org, or inquiry@npic.org.
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Respectful Care in the Neonatal Intensive Care Unit: Prematurity Awareness Month

As we close out Prematurity Awareness Month, it is important to recognize the outstanding work that goes on within neonatal intensive care units (NICUs) every day.

Posted under: Other, Quality of Care

As we close out Prematurity Awareness Month, it is important to recognize the outstanding work that goes on within neonatal intensive care units (NICUs) every day. While we use one month to recognize the importance of reducing prematurity and its impact on the family and community, there is no better time to reflect on the need to infuse Respectful Newborn Care in the NICU every day.



Respectful Care…What is That?
Understanding the value and importance of respectful care in the neonatal care setting is and will be an essential conversation to engage. In pregnancy and obstetrics, Respectful Maternity Care (RMC) is defined as the preservation of a person’s dignity, choices, and preferences during birth and during the postpartum period. Respectful Care has been and continues to be a priority for maternal health outcomes, particularly with the continued disparities that are discussed within communities, including significant maternal and neonatal outcome disparities experienced by Black and Brown women, and other marginalized communities.

While the Respectful Care model typically focuses on the person giving birth, it is essential that these elements are applied to the supportive care of the mother/patient and newborn dyad in the Neonatal Intensive Care Unit. There are a few areas to focus on, including reducing stressors, provision of family navigators and support structures, and trauma-informed care. What are some of the elements of Respectful Newborn Care? Let’s dive in:

Reducing Stressors
The stressors that new parents experience with the birth of a premature newborn can be overwhelming. And supporting a new parent is critical in offering Respectful Newborn Care. Respect for the parent and their needs is an essential element of newborn care.

Imagine you have just given birth 2 months early, and you have two young children at home. Your spouse is ill and not able to visit with you and your newborn. You live an hour away from the hospital, and arranging childcare is uncertain. What is going through your mind? How are you going to be in two places at once?

NICU parents deal with these types of situations every day. Providing support to the mother and family to assure opportunities for bonding and care provision are essential. Transportation, food security, and the care of other dependent children as needed for frequent visitation to the NICU provides stability and a sense of control. Financial challenges compound these issues and further accelerate disparities that are found within neonatal care. Fully understanding social determinants and drivers of health (SDOH) speak to the promotion of dignity, autonomy, and the ability to care for a newborn amid turmoil, such as an unexpected admission to the NICU.

Availability of a NICU Navigator/Support Structure
The ability for a mother to achieve the highest levels of autonomy during a NICU stay relies on the ability to fully comprehend and understand the course of care. A NICU Family Navigator or NICU Family Support Program can facilitate communication and ensure that every newborn and family are assured the same level of respectful care and discharge planning. Any differences in care, specifically surrounding diverse families, racial and/or ethnic outcomes discovered during inpatient care or during the discharge process should be immediately evaluated. Postpartum doulas can be a tremendous source of support for transitioning families from hospital to home. Want to know more about postpartum doulas and NICU care? Here’s more from DONA International.

Trauma-Informed Care
Trauma-informed care is an essential principle of the Respectful Care model. Facets of trauma-informed care, such as previous experiences of trauma and subsequent response and reducing the impact of a current trauma (like an unexpected admission to the NICU) provide a meaningful foundation to the care of mothers and families during a stay in the NICU. Maternal/newborn separation can exacerbate trauma, and facilitation of visitation and information is key. Again, identification of environmental and social/structural determinants of health and their mitigation can ease the impact of further trauma to a family unit. These elements are cyclical, and all serve as conduits within a Respectful Care paradigm.



Part of reducing parental trauma in the NICU is assuring a shared decision-making approach for care. Encouraging involvement and supporting choices in the care of a premature baby can be empowering and motivating for a parent experiencing trauma during a NICU admission.

Impact of Prematurity on Communities
Over the past five years, the rate of preterm birth with major complications (MSDRG 791) within the National Perinatal Information Center Database (www.npic.org) has been steady at about 2.7% of total neonates in 2021 (n = 333,553). Each one of these babies represents a family in crisis and experiencing a preterm birth. While there is a resounding and much needed call for Respectful Maternity Care within perinatal settings, let’s also ensure that Respectful Newborn Care can be the natural next step in assuring a positive transition from hospital to home.

Learn more about Prematurity Awareness Month.
Interested in data that can support prematurity research? Connect with National Perinatal Information Center about research access to the NPIC Perinatal Database. NPIC has one of the oldest and most robust and dedicated linked mother/baby datasets in the US and provides key metrics for linked maternal and neonatal outcomes. To learn more, contact inquiry@npic.org.

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Breast Cancer Awareness Month

October is Breast Cancer Awareness Month. It is estimated that approximately 13% of women will be diagnosed with breast cancer in their lifetimes. My mother was one of them.

Posted under: Other, Quality of Care

October is Breast Cancer Awareness Month. In 2022, it is estimated that 287,850 people will be diagnosed with Breast Cancer. It is estimated that approximately 13% of women will be diagnosed with breast cancer in their lifetimes. My mother died of breast cancer in 2016. And I thought I would pay tribute to her journey and how she impacted my life during her own cancer battle, and her death.

Breast Cancer Sucks…And Other Stories from the Pink Ribbon Saga
Next week will be 6 years since my mother died of breast cancer at the age of 72. Her last few months were very tough, and the last few weeks were tougher. But I learned a great deal about courage, determination, and the love between a mother and daughter in those last fleeting moments.

Rewind to 2006.
I went to visit my mother in Missouri as I often I could. Only this time, she said to me, “feel this.” As a nurse, “feel this” is never a phrase that you want to hear, because typically, what you end up feeling is far from normal.

But I didn’t have to “feel” it. I could already “see” it. The orange-peel appearance on her left breast screamed “breast cancer” from across the globe. Fortunately, it had not yet spread (or so we thought), and a mastectomy would tame the cancer beast…for a while. For years after her mastectomy, she led a good life.

So fast forward to 2016.
My mother came to live with us because she began to fall, and she attributed it to being “clumsy.” What she had not shared (because she was ashamed) is that she had become incontinent, something that she cried about frequently. She complained about pain in her right hip that caused her considerable dysfunction. My “Spidey senses” went on alert. Her new physician recommended physical therapy, and I thank the heavens above every day for that physical therapist. Upon a routine assessment of her movement and motion, “something wasn’t right.” They reported their findings to the physician, who scheduled a follow-up the following week.

Within a week, a urinary tract infection would lead to rolling off the couch and some significant confusion, and a trip to the local emergency department. She complained of pain in her neck and to be safe, they performed an x-ray of her neck.

“We need to talk.”

That is a phrase that should be removed from medical school, nursing school, and every school. When I heard that, two things happened: 1) My Spidey senses were proven to be in good shape after all, and 2) you discover you don’t hear or comprehend much after that phrase…requiring multiple repetitions to ensure clarity and comprehension.

Not only did my mom have “vertebral bodies” (aka tumors) in her neck, but she had them down her spine, in her skull, and in her shoulders. And those are the ones we could see from the film. A full body scan the next day would show they were “everywhere.” And where do you think the largest concentration was? You guessed it…her right hip. But there was also a pocket right around the nerve innervation to her bladder, which they then attributed to causing the incontinence. She and I cried together when I confirmed for her that her incontinence was not her fault, and nothing about this cancer was her fault. What this also told me is that she was living with symptoms for far longer than she led on and that she had been suffering in silence. Even when asked or prodded for information. For a daughter, that type of insight and reflection creates its own trauma and regret.


My mother went to rehab after being discharged to facilitate a bit of steadiness in her walking and to put some time together to bridge a hospice plan. The rehab center treated her like a Queen, and for that, I shall forever be grateful. Her favorite day of the week was “Spa Day,” where she had her hair washed, set, and dried. She had had a pretty rough morning the day this photo was taken, so that particular Spa Day had a much greater purpose.


This picture was taken exactly 6 years ago today, on Halloween. She loved the Halloween candy corn scarf and pants I had brought her for the day. She showed them to everyone. What I realize now is that she knew she was dying, even in this photo. And I will forever be sorry that I did not spend one more moment with her when I had the opportunity. She never wanted me to leave. I stayed long days and wanted to be sure she was never alone. The tug that the “Center of the Oreo” generation feels is real…the tug between your ill parents and the tug from the needs of your own family is real. And as the filling in the Oreo cookie, your soul feels squeezed on each end.

She was discharged on Halloween afternoon to Hospice care at our home. That evening she sat in her wheelchair with us as we gave candy out to eager children who could not resist talking to my mom, the “witch” with purple hair and tall black hat (her requested Halloween costume)…

“Where is your broom?” asked a smiling child in a Power Rangers costume.

“Harry Potter needed it for Quiddich,” my mother replied. Needless to say, that made the Power Ranger’s night (and quite frankly, was a brilliant answer from my mom on the fly).

Epilogue
Nine days later, my mother was gone. The pain suddenly was more than she could handle, and the Hospice team provided more support to her and to my family than I can possibly ever thank them for in my lifetime or the next. That last day she was very sleepy and would not respond to voices, but I was driven by some unknown force to pull out our old family pictures and share them with her, watched her favorite movies, and read some of her favorite books to her. I stayed in her room all day and into the night and was with her when she took her last breath. My grandmother knew that the time was near but was too frail to travel. I will never forget that phone call to let my grandmother know that her daughter had died. But she died peacefully, with her family around her, and for that she was eternally grateful.

Parting Thoughts
I’ll say it again. Breast cancer sucks.

But I also recognize the advantages that she had, that many do not…quality medical care in the hospital and at home, quality skilled nursing and rehab facility, and insurance to cover care and Hospice services. There are many who cannot afford quality cancer care and other services provided during treatment.

My mother was one of the most fearless and driven women I have ever had the pleasure of knowing. But there was also that underlying fear and trepidation of seeking out care with new or lasting symptoms. I will always remember her being so ashamed of being incontinent, and afraid of what providers would say to her, or how they would judge her.

So, if there are any last thoughts, here they are:
  • Listen to women. We say that a lot in maternity care settings. And I am saying it here. Providers, listen to women. Listen to their symptoms.
  • Let’s commit to not jumping to judge incontinence. There are real and physiologic reasons for incontinence. We need to eliminate the stigma of incontinence in women and provide compassionate care for those suffering from it. This is a quality-of-life issue for many women suffering in silence.
  • Hospice teams are angels here on earth. They provide the most compassionate and personal care that I have ever seen or experienced from another human being.
  • Family leave policies and other family leave support would bring a great deal of relief to families struggling to work, raise their families, and help aging and ill parents. The “Oreo Cookie” generation? Yes, it is real. Raising families and supporting parents at the same time can be very tough. But the lessons my children learned during this process are being realized already through their actions and decisions. And have made them better young men.
During this October, Breast Cancer Awareness Month, I hope you have had time to reflect and celebrate with survivors of breast cancer, or like me, reflect and celebrate the lives of those we have loved and lost. Let’s make Breast Cancer history once and for all.

I love you, Mom.




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Pregnancy & Infant Loss Awareness Month: The Importance of Becoming Aware

This blog post discusses pregnancy and infant loss, which may be difficult for some, particularly those in more recent stages of grief. We are grateful to our guest blogger this week who offers unique insights and gentle reminders of how we can all support those experiencing pregnancy and infant loss.

Posted under: Maternal Health, Mental Health, Other

As October starts coming to an end, we are reminded of the importance of getting our mammograms during Breast Cancer Awareness Month. In September, Ovarian Cancer Awareness Month served to remind us all of the importance of screening and proper treatment for such a devastating gynecological cancer. So many worthy and special awareness campaigns. Tucked in there with them, however, is Pregnancy & Infant Loss Awareness Month, an awareness month that is a little quieter than the others and not as openly discussed. Why is that? According to the Star Legacy Foundation, 1 in 4 women will suffer a pregnancy loss. One in four. Twenty-five out of 100. Twenty-five percent. However you wish to state the statistic, it equates to an incredible number of women affected. So why aren’t more people talking about pregnancy & infant loss? Why does it have to be such a lonely type of loss?

Here is an interesting thought: If you were to lose your leg or your vision or some other important piece of your body, many people would probably console you. You would receive emails and cards wishing you a speedy recovery. Friends would call you and bring you meals to help you during your time of convalescence. You would most likely have more support than you ever imagined. People would think of you and would be reminded of your loss every time they see you and the well wishers would continue to wish you the best on your journey to recovery.

However, if you experience the loss of a pregnancy or an infant, you may receive some support from close family and friends and you may receive meals and cards. However, the number of people who encounter you or who think of you are not going to be able to relate to your type of loss at all. They may not have ever known you were pregnant. They probably never met your baby. There is nothing tangible to remind them that you have lost a piece of you, because your loss isn’t reflected by your outside appearance. Your loss lives in your soul, which is a place that no one can visibly see.

This is why Pregnancy & Infant Loss Awareness is so important. In order for the women affected by such a profound loss to feel supported, we have to understand what a lonely and unique type of grief pregnancy & infant loss creates.

Some important statistics (www.starlegacyfoundation.org):
  • 1 in 6 women will be diagnosed with Post-Traumatic Stress Disorder after a stillbirth.
  • Six months after a stillbirth, parents operate at 63% of their previous productivity due to the emotional, physical, and mental demands of grief.
  • 60-70% of grieving mothers report grief-related depression symptoms 1 year after stillbirth. In ½ of these mothers, the symptoms lasted for 4 years or more. It is estimated that 4.2 million women in the world are living with depression secondary to stillbirth.
  • Almost 1 in 10 obstetricians will be so devastated by a stillbirth that they will consider a career change.
  • Today, across America, 70 babies will be stillborn. That is enough to fill a school bus.
How do we do better?
The wonderful Brene Brown, in her famous video on the subject of Empathy, tells us that in order to make a connection to someone and what they are going through, we must climb down into the hole with them. We must find some way to connect with their experience so that we can support them.

We are human. Humans, by nature, crave connection. Being aware of another person’s pain, even if we can’t completely relate is the first step in connection. If we can create an awareness about something, it will become easier over time for us to acknowledge those people around us who are going through that experience.

Therefore, we have an obligation to become more aware and then to spread that awareness. If you are a neighbor or a friend of someone experiencing a pregnancy loss, be aware that she is hurting and feeling isolated. Ask her baby’s name and don’t be afraid to ask her how she is doing. If you are a nurse caring for parents experiencing the loss of a baby, take the time to be present for them. If you are at a loss for words, tell them that you can’t find the words but that you are going to be present for them. If you are an obstetrician and you have just told your patient that her baby has no heartbeat, take the time to sit with her and let her cry and let her know that while she has never been through this before, you have. You have been through this with other mothers and you are going to take the best care of her.

That is how we do better. We take a moment to realize that this mother’s pain is monolithic and life-altering. We sit in the deep, dark place with her and love her through it. We allow ourselves to become changed for the better after being a part of such a sacred experience. We don’t shy away from supporting these families. Instead, we reach out a hand and allow our efforts to lift them up over time to a more hopeful place.

Remembrance & Hope for the Future
There are many ways that people create awareness and remembrance during October. Many will light candles on October 15th during the global Wave of Light. Many will attend remembrance walks and celebrations. Others will release balloons or lanterns. All are wonderful ways to remember and remind others of the pain of pregnancy & infant loss. During this special month of October, I challenge you to think about butterflies. They are a symbol of hope and peace and rebirth. Dr. Elizabeth Kubler-Ross was a doctor known for her work with death and dying. As a nurse who works in bereavement, I am very familiar with Kubler-Ross's stages of grief. Dr. Kubler-Ross wrote a book, The Wheel of Life, A Memoir of Living and Dying, about her post war visit to the site of the Maidanek concentration camp, which is in Poland. She spent time in the area where the children had lived and she saw clothing and shoes and other signs that they had been there. However, it was the hundreds of butterflies that the children had carved into the walls with pebbles and fingernails that brought her to the realization that the prisoners in the camps must have known that they were going to die. “Soon they would leave their bodies the way a butterfly leaves its cocoon. And I realized that was the message they wanted to leave for future generations. . . .It also provided the imagery that I would use for the rest of my career to explain the process of death and dying.”

As October and Pregnancy & Infant Loss Awareness Month comes to an end, I want you to think about the butterflies that were drawn on the walls in Poland by those dear children. Those children, although they would never know it, inspired awareness around the topic of death. Their art opened the door for us, as a community of humans, to become aware of those around us who are hurting and to hope for the type of healing that only happens when we come together in support of one another.

About the Author
Melissa Petersen has been a nurse for 26 years and has worked in the field of women’s services throughout her career. She began her work as a nurse in Labor & Delivery and advanced her degree in 2001, earning a Master’s degree as a Women’s Health Nurse Practitioner (WHNP) from Georgia State University. After several years working in a private practice and after experiencing the stillbirth of her 3rd child, she returned to Labor & Delivery at Northside Hospital and became one of the Perinatal Bereavement Clinicians. One of her most cherished accomplishments is the establishment of H.E.A.R.T. Strings Perinatal Bereavement & Palliative Care Program, which has become a nationally known perinatal bereavement program that serves not only the patients from Northside Hospital, but also families from around the country who are seeking support H.E.A.R.T.strings Perinatal Palliative Care Program (northsidepnl.com). In 2014, Melissa was named a March of Dimes Nurse of the Year in the field of palliative care.
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National Perinatal Nurses Week

House Resolution 1427 for 2022, has been established, to thank and promote the profession of perinatal nursing by encouraging participation in National Perinatal Nurses Week.

Posted under: Maternal Health, Other

There are approximately 350,000 perinatal nurses throughout the US that provide outstanding care for women, birthing people, and their families. Perinatal nursing is a unique nursing specialty that covers a wide range of care, including antepartum, intrapartum, postpartum, and community care. In addition, perinatal nurses work within several healthcare settings that offer a wide variety of patient care and support. At any given moment throughout the day or night, a perinatal nurse is:
  • Supporting a woman and her partner through labor
  • Providing a home visit to perform a postpartum and well-newborn check
  • Collaborating with a provider on the best approach to a complex maternal health problem
  • Giving a newborn its first bath while simultaneously performing a head-to-toe assessment
  • Supporting and encouraging a first-time breastfeeding mother
  • Leading a nursing unit, department, or service line
  • Participating in quality improvement activities to elevate the quality of care
  • Getting a new mother up to the bathroom for the first time, and providing a steady hand
  • Quietly crying with and supporting parents who just delivered a stillbirth
  • Providing primary care in a clinic or federally qualified health center (FQHC)
  • Bringing a new mother to the NICU to see her baby for the first time
  • Assessing postpartum bleeding, bonding, feeding, and overall health and wellbeing
  • Providing discharge education including warning signs that could save a mother’s life
  • _______________ (fill in the blank)

House Resolution 1427
I first met Representative Lauren Underwood (D-IL 14) during my tenure at the Association of Women’s Health, Obstetric, and Neonatal Nurses (AWHONN) in Washington, DC. I can vividly remember her passion and commitment to women’s health, particularly maternal morbidity and mortality, and the growing maternal health disparities for Black and Brown women. During the launch of the Black Maternal Health Caucus, Representative Underwood spoke very highly of perinatal nurses across the nation who were caring for women before, during, and after pregnancy, and the collective responsibility to reduce and eliminate maternal health disparities and care inequity. I have met Representative Underwood several times since then, and her efforts to support perinatal nurses have only continued to grow.

Representative Underwood and colleagues (Representative Royball-Allard) in the United States House of Representatives have established House Resolution 1427 for 2022, thanking and promoting the profession of perinatal nurses by encouraging participation in National Perinatal Nurses Week.

Resolution
Thanking and promoting the profession of perinatal nurses by encouraging participation in National Perinatal Nurses Week.

Whereas perinatal nurses work with patients who are attempting to become pregnant, are currently pregnant, or have recently delivered;

Whereas perinatal nurses provide prenatal care and testing, care of patients experiencing pregnancy complications, care during labor and delivery, and care of patients following delivery;

Whereas perinatal nursing includes labor and delivery nurses, mother-baby nurses, and neonatal nurses;

Whereas continuous support during labor from a registered nurse is critical to achieve improved birth outcomes;

Whereas there has been a persistent shortage of nurses across all fields, while demand continues to grow;

Whereas mothers are dying in the United States at the highest rate in the developed world, and the crisis is most severe for Black mothers;

Whereas nurses are positioned to provide unique insight into patient care circumstances that may contribute to women’s deaths, thereby reducing the rate of, and disparity in, maternal mortality;

Whereas October, the 10th month of the year, was chosen to celebrate National Perinatal Nurses Week to represent an Apgar score of 10;

Whereas Apgar is the point system used to evaluate the health of a newborn baby, with 10 representing the healthiest possible score for a baby, and this score would be assigned and recorded by the perinatal nurse attending the birth;

Whereas the 10th day of the month of October was chosen to begin National Perinatal Nurses Week to represent 10 centimeters dilated, the measurement used to evaluate a woman’s progress in labor, which constitutes complete cervical dilation, the successful completion of the first phase of labor when a woman is ready to deliver her baby, and this progress would be supported and recorded by the perinatal nurse attending the birth; and

Whereas the week of October 10, 2022, through October 17, 2022, is set aside to celebrate National Perinatal Nurses Week to raise public awareness of and celebrate the 350,000 perinatal nurses who are clinically active in hospitals, perinatal facilities, and health centers;

Now, therefore, be it Resolved, That the House of Representatives thanks and promotes the profession of perinatal nurses by encouraging patients, hospital administrators, health care professionals, policymakers, and others to become more familiar with the contributions of perinatal nurses by participating in National Perinatal Nurses Week.

Appreciation, Recognition, and Gratitude
I have been a perinatal nurse for 20 years. Many of my colleagues have been perinatal nurses for much longer, and some are just beginning their journey. Regardless of tenure, I offer this message:

To my perinatal nursing colleagues,
This week is for you. Thank you for everything that you do for your patients, their families, and your communities. Your continued commitment to patient care, equitable maternal health outcomes, and respectful maternity care is appreciated by many far and wide. You touch the lives of women and others every day, many of whom you may not even realize. But they remember you...your words, your compassion, and at times your mere silent presence has created lasting impressions and memories. Everything you do makes a tangible difference and leaves a living legacy, and I hope you will take some time this week to be recognized for the important contributions you make to patient care. I also hope you will share your own experiences with your colleagues, organizations, and communities, and continue to promote and protect the value and spirit of perinatal nursing.

Happy National Perinatal Nurses Week

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The Impact of Maternal Mental Health Stigma

This blog describes maternal deaths reviewed by Maternal Mortality Review Committees throughout the United States. Each one of these deaths represents a wife, sister, daughter, aunt, niece, or other loved one. We recognize the sacred opportunity to learn from them, and through their experiences. And we honor each one by continuing to elevate and improve maternal health outcomes for all women and birthing people.

Posted under: Maternal Health, Mental Health

On September 15th, I wrote about the continued stigma surrounding maternal mental health and its impact on maternal morbidity and mortality.

Just a few days after that blog was published, the Centers for Disease Control (CDC) released its most recent report on maternal deaths during the period 2017 – 2019 from 37 Maternal Mortality Review Committees (MMRCs). Historically, most pregnancy-associated maternal deaths have been related to postpartum hemorrhage, cardiovascular disease, or other cardiac condition. Even more startling, the reviews found that over 80% of these deaths were deemed to have been preventable.

80%.
For the period 2017 – 2019, the most frequently reported outcome was that of mental health conditions, including deaths of suicide, overdose/poisoning related to substance use disorder, and other deaths determined by the MMRC to be related to a mental health condition, including substance use disorder.

It is time to make mental health part of our vocabulary. Normalize it. Embrace it. For many it is much more comfortable to discuss Postpartum Hemorrhage or Preeclampsia. Substance use disorder tends to lean in on the philosophy that “the patient brought that on themselves.” Nothing could be further from the truth.

Enough.
If we want to truly make a difference in healthcare, we need to start by leaning in and digging deep about mental health stigma. Normalize discussions surrounding addiction medicine, suicidal ideation, or using substances to offer a momentary freedom from pain, worry, anxiety, depression, or worse. These topics and many more like them create crucial conversations within each one of us and force us to think more broadly. And more compassionately.

Over 80% of maternal deaths were preventable.
Keep in mind that there is so much to unpack behind mental health. Life experiences and circumstances play into our own mental health. When was the last time you asked a patient about their living situation? Can they afford housing? Food? Essentials? Do they have reliable transportation? How much of these add to anxiety, depression, and other maternal mental health issues? Or are the cause of it? Beginning on January 1, 2023, The Joint Commission and the Centers for Medicare and Medicaid (CMS) begin rolling out new standards regarding unmet social needs. Feel free to reach out to me and I’ll be happy to introduce you to these changes. If you’re not intentionally engaging in these conversations now, you will be, and preparation is key. There is so much more than simply asking these questions. There is skill development, empathy, and cultural competence that must be considered.

Don’t Feed into the Stigma
There is a great deal of interest in implicit bias training, particularly surrounding social and structural racism. And for good reason. Black women continue to die at much greater rates than their white counterparts. In addition to ethnic disparities, be thinking about the mental health bias that continues to permeate healthcare. When was the last time you spoke up and spoke out against this type of comment?

“The Bipolar patient in room XXX”

“Poor baby, the mother is a drug addict”

“Mom is a drug abuser, so you can be sure prenatal care was the last thing on her mind”

This post was not long. It did not need to be. Lean into these maternal mortality review committee findings. Discover and engage in your own contributions to eliminating preventable maternal mortality. And then engage those around you. And while you are at it, be listening and watchful for mental health stigma and bias and become a champion. You may save a life.
#EndTheStigma
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Screening is Prevention

Care providers play a major role in creating an opportunity to screen, assess and refer mothers to address any concerns about mental health. Upon postpartum checkup and subsequent annual visit, it is vital that providers seize the opportunity to practice universal screening.

Posted under: Maternal Health, Mental Health

According to the CDC, in 2021 there were 3,659,289 births. These 3 million plus mothers may have concerns about their new motherhood responsibilities and think to themselves:

“Am I doing this right?”

“What comes next?”

“Am I to feel this way?”


These questions can surround the mind of new and seasoned mothers by the day, by the minute, and by the second. There are opportunities when the mother may not feel safe speaking to anyone within her nuclear or selected support system but feels a strong connection with the obstetrician/gynecologist, midwife, or provider. In this case, the mother will benefit from a neutral, trusted person to discuss her fears and their world of uncertainty. It is at this crucial moment that the provider plays a major role in creating an opportunity to screen, assess and refer mothers to address any concerns about mental health. Upon the mother attending her postpartum checkup and subsequent annual visit, it is vital that the provider seizes the opportunity to practice universal screening. Universal screening is for every patient that enters the practice to be screened for mental health and substance use concerns. In previous years screening consisted of urinalysis as the only avenue, but we have since evolved to self-reported screening for alcohol, illicit drugs, nicotine, and prescription medication. If a woman feels ashamed to voice out loud her darkest fears, she may put on a face of confidence and a smile moving away from the truth and staying silent. The truth is that the mother may be hiding from loved ones her feelings of being overwhelmed, possibly feeling sleep deprived, and may be using substances for sleep, to gain confidence, or to increase her energy.

Universal Screening
Over the past few years, the American College of Obstetricians and Gynecologists (ACOG) and the Alliance for Innovation on Maternal Health (AIM) have increased the recommendations for universal screening during pregnancy for alcohol, illicit drugs, nicotine, and pain medications. This recommendation provides for several key areas, including removing potential bias in risk-based screening and the prevention of Neonatal Abstinence Syndrome (NAS) as well as sudden infant death syndrome (SIDS). According to the newest 2020 study from the National Institutes of Health, mothers who drank and/or smoked past the first trimester had an increase of SIDS twelvefold when compared to mothers who did not use alcohol or nicotine beyond the first trimester. Universal screening for stimulants is also important to avoid placental abruption during any of the three trimesters during pregnancy. According to the NIH (2020), 1 out of 10 births is associated with placenta abruption. Schmidt, Skelly, and Raines (2022) state that there are high-risk factors that contribute to placental abruption. Those factors include the use of alcohol, cocaine, and hypertension. It is beneficial to have providers and the staff invest in the concept of universal screening during the perinatal period and beyond even if a mother looks to be doing well. Postpartum can begin at the birth of the infant and last up to 2 years. There is a concern for mothers who have predisposed mental health conditions such as depression and/or anxiety. Understanding and keeping in mind the past mental health concerns is vital for the provider to be aware and continue with screening often even for non-routine appointments.

Screening Brief Intervention Referral to Treatment (SBIRT)
Screening Brief Intervention Referral to Treatment (SBIRT) is a sustainable and billable service that is a
  • screening tool (S) for mental health or substance use disorder concerns
  • completing a brief intervention (BI) and/or education
  • and then refer (R) to a higher level of care or treatment (T) if necessary.
Screening, Brief Intervention and Referral to Treatment (SBIRT) is an evidence-based approach to identifying patients who may not be exhibiting warning signs but needs someone to reach out and discover there is a concern. The goal of SBIRT is to improve the quality of life and prevent negative health consequences.

The following screening tools are appropriate for the medical technician or provider to administer including but not limited to the following:
  • AUDIT (Alcohol Use Disorder Inventory Test)
  • DAST (Drug Abuse Screening Tool)
  • PHQ-9 (Patient Health Questionnaire-9).
The screening tools to assess mental health:
  • Beck Depression Inventory
  • Generalized Anxiety Disorder (7 item)
The purpose of these screening tools is to give the mother a safe place to express emotions and have the opportunity to answer questions that are scored with guidance for the next steps of the referral process. The SBIRT screening can be administered by any office or practice team member from the receptionist to the medical assistant, the licensed staff, and providers. The SBIRT can be given electronically, or it can be administered via paper and pencil. The SBIRT is user-friendly and assists patients to be self-aware of high-risk behaviors that may cause concern for mother and baby.

Postpartum Prevention
Universal screening by means of the SBIRT can save the lives of mothers who suffer silently from postpartum depression and postpartum anxiety. According to the Psychiatric Times the rate of suicide attempts has tripled for pregnant and postpartum women.

According to the CDC’s Vital Statistics (2020), the reports for maternal depression were alarming. One in five women was not asked about depression during the prenatal period and 50% of women were not clinically treated for depression. The one patient in five as well as the 50% could have been addressed if the SBIRT was administered during the prenatal and postpartum visits. A provider that utilizes universal screening and routinely provides screening tools encourages mothers to share their vulnerability so the appropriate interventions can be in place for the mothers.


About the Author:
Dr. Moss is a native of Buffalo, NY and a graduate of the State University of New York at Buffalo and New York University. Dr. Moss is the president and founder of Positive Direction and Associates, Inc.® and creator of the Positive Direction Model® an intervention/prevention program to assist pregnant women that are in recovery or active use to empower themselves and increase self-efficacy through education and addressing psychosocial issues.

Davina A. Moss, Ph.D., CRC, CASAC, NCC
President and Founder
Positive Direction and Associates, Inc.
50 Fountain Plaza, Suite 1400
Buffalo, NY 14202
716-704-5510




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