Tiffany Willis, PsyD, Sharon Tan, PsyD, Andrea Werner Insoft, LICSW, ACSW

A meta-analytic study found 19% of mothers to have clinically significant depressive symptoms during the first three months postpartum (Gavin et al., 2005). This rate increases significantly in mothers whose infants require a stay in the Neonatal Intensive Care Unit (NICU). Segre et al. (2014, p.321) noted between “28% to 67% of NICU mothers reported elevated levels of depressive symptoms.” These symptoms are persistent. Miles et al. (2007) found 30% of mothers to continue to report depressive symptoms two months postbirth. The rate of suicidal thoughts of NICU mothers was 33% (Lefkowitz et al., 2010), more than double that of postpartum women with non-hospitalized newborns at 14% (Lindahl, Pearson & Colpe, 2005). One of the hallmark features of PMADs is anxiety, which is often overlooked. It is common for an anxiety disorder to be comorbid with a diagnosis of depression. A report from the Institute for Medicaid Innovation (2018) mentioned research showing that “this comorbidity may result in a longer, more severe course of behavioral health outcomes.” A study by Barr (2010) found that 28% of NICU parents reported symptoms that qualified for Acute Stress Disorder. Post-Traumatic Stress Disorder was found in 15% of NICU mothers one month after infant NICU admission (Lefkowitz et al., 2010), and prevalence estimates for generalized anxiety range from 18% to 43% in various studies (Segre et al., 2014). According to Singer et al. (1999), NICU mothers also report more symptoms of obsessive-compulsive disorder than mothers whose babies go home from the nursery.

PMADs have garnered more attention in recent years as mothers with social media influence have written books or posted the reality of PMADs on various social media platforms. This has reduced some stigma in talking about PMADs; however, as indicated in the National Perinatal Association Position (NPA) Statement (2018) on PMADs, 50% of mothers with symptoms will not seek mental health treatment. In California, two laws were passed, AB3032 and AB2193, requiring hospitals to develop and implement a standard protocol of care for maternal mental health and for maternal health care providers to screen for PMADs prenatally and postpartum with case management programs to support access to treatment. The higher rates of PMADs among NICU mothers as a subpopulation indicate an even greater need for routine screening for PMADs in the NICU setting, followed by interdisciplinary efforts at follow up and referral to intervention so these mothers can receive treatment. Kartika (2017) found that even when postpartum depression has been diagnosed in low-income women, only 1 in 10 women receives treatment for their condition (Moore et al., 2018). The success of screening, diagnosis, and treatment of PMADs is dependent on larger factors such as cultural views of maternal mental health, implementation of integrated maternal care services in health care systems, and community resources available, with access to health care providers trained in treating PMADs.

The Impact

The effect of untreated PMADs is not only detrimental to the well-being of the mother, but it can also have dire consequences for the attachment between the mother and child, often leading to adverse developmental outcomes for the child through adolescence and adulthood (Stein et al., 2014). Other negative effects of untreated PMADs include relational challenges with family members, long term medical and social costs, and housing stability (Moore et al., 2018). A Mathematica Policy Research brief (2019) indicated that the estimated national economic costs of untreated PMADs following the mother-child pair from pregnancy through five years postpartum is $14.2 billion, or an average of $32,000 for every mother-child pair. The estimated total costs for California alone is $2.4 billion yearly. The largest costs associated with untreated mothers are related to productivity losses and maternal healthcare expenditures. In contrast, costs related to child outcomes were associated with preterm births, child behavioral and developmental disorders, and child injury. Suicide from PMADs also exerts significant social and societal costs, accounting for nearly 20% of deaths in the postpartum period and is the second leading cause of mortality among postpartum women (Lindahl, Pearson & Colpe, 2005).

Addressing the Epidemic

NPA formed a workgroup in 2018 to address and respond to the perinatal mental health need. This Perinatal Mental Health workgroup is multidisciplinary in nature, comprised of professionals who work with infants and their families. This workgroup recognizes the significance of PMADs on the well-being of parents and their developing infants. The workgroup was first initiated as a result of a need for a position statement on perinatal mental health. As members of NPA, individuals with unique skills and specialized training in the perinatal field met regularly to sift through the existing literature and recommendations from various organizations and disciplines regarding the screening and treatment of perinatal mood and anxiety disorders. After thoroughly reviewing the literature, the workgroup constructed a position statement that eloquently synthesized the data gathered. The position statement gave NPA’s recommendations on whom and when to screen, as well as which tools are most appropriate. The recommendations also discussed the importance of screening on parental well-being and child development. This position statement is now used across the country as a standard of care for the screening and identification of perinatal mental health disorders.

Organizational Partnerships

While NPA strives to be a leader in perinatal mental health, its efforts would be in vain without strategic partnership within the organization and collaboration with external entities. Organizational dynamics are complex in the creation of strategic partnerships and can enable organizations to provide better supports, services, and interventions to more people. These partnerships are particularly important for nonprofit organizations to provide advocacy, peer support, and education at both the national and regional levels. Given these significant benefits, NPA has reached out to other leading organizations providing support to children and families experiencing PMADs. Below you will find a description of both within organization development and cross organization partnerships.

National Network of Neonatal Psychologists (NNNP)

The NPA NNNP began in 2011 when a small group of neonatal psychologists across the country connected and began regular conference calls. These conference calls were led by former NICU parent and psychologist, Michael Hynan Ph.D. These “Hynan Calls” provided information on evidence-based practices, innovative models of care, and opportunities for collaborative problem-solving. Over time, these conference calls expanded, and many participants contributed to NPA’s Interdisciplinary Recommendations for Psychosocial Support of NICU Parents (Hynan et al., 2015). A critical recommendation was that every NICU includes a doctoral-level psychologist, as well as a master’s level social worker. According to the American Academy of Pediatrics (AAP) (2011), there are well over 1,000 NICUs in the United States alone. The NNNP held its first retreat in Atlanta, Georgia, in March 2017, and annual retreats, multiple workgroups, and an active listserv have subsequently evolved. This group elected its f irst Executive Council in May 2019. A resulting council of five psychologists, Amy Baughcum, Allison Dempsey, Pamela Geller, Sage Saxton, and Tiffany Willis, were elected via a national vote.

The NNNP continues to integrate with the APA’s Society of Pediatric Psychology, Neonatology Special Interest Group (SIG). An NNNP Executive Council member, Dr. Baughcum, serves as the elected Chair of the Neonatology SIG and liaison to the NNNP.

The NNNP continues to refine its procedures and policies and actively reach out to interested parties, and those previously on the “Hynan Calls” to determine ongoing interest and availability for collaborative projects. The NNNP’s mission is “to optimize care for all infants and their families and NICU settings through direct family involvement, staff support, research, and education.” The vision is “to be the leading voice and resource for mental health services and NICU settings.”

The NNNP has developed subcommittees to include: Research, Teaching and Continuing Education, Advocacy and Outreach, and Communications. There is an ongoing discussion about the formation of a trainee/student group and formalized mentorship options.

Postpartum Support International (PSI)

Postpartum Support International (PSI) was founded on June 28, 1987, by Jane Honikman in Santa Barbara, California, at the first annual conference Women’s Mental Health Following Childbirth. PSI’s core mission is to promote awareness, prevention, and treatment of mental health issues related to childbearing. Its vision has been to establish a postpartum parent support network in every community worldwide (https://www.postpartum.net/aboutpsi/history-of-psi/).

Initial telephone discussions between NPA staff and the Executive Director of PSI, Wendy Davis, Ph.D. began in February 2019. These monthly standing calls have led to a strategic partnership agreement, corporate sponsor conference agreement, and reciprocal reduction related to conference fees and membership dues. Additionally, this partnership has increased awareness of the two organizations through the inclusion of descriptive and contact information for each organization as well as a variety of conference presentations, abstracts, and posters.

The need for specialized training has been increasingly recognized, and PSI began to offer a certification in Perinatal Mental Health (PMH-C) in October 2018. As of November 2019, 219 have achieved this specialty certification.

Preemie Parent Alliance (PPA)

NPA maintains a long-standing relationship with the Preemie Parent Alliance (PPA). In conjunction with PPA, NPA has produced a series of 7 webinars that were released in November 2019 to coincide with Prematurity Awareness Month. These webinars facilitate discussion between parents and professionals regarding the previously released NPA Interdisciplinary Recommendations for the Psychosocial Support of NICU Parents.

National Association of Perinatal Social Workers (NAPSW)

The National Association of Perinatal Social Workers, incorporated in May 1980 and officially inaugurated at the Fourth National Conference on Perinatal Social Work in Washington, D.C, is a group of social workers who help individuals, families, and communities respond to psychosocial issues that emerge during the period from pre-pregnancy through an infant’s first year of life. The NPA and NAPSW have long been partnered to provide support and education to professionals who work in a variety of perinatal settings, including, but not limited to, the NICU, labor and delivery, outpatient mental health settings, community health programs, and support in the home (https://www.napsw.org).

Corporate Member

Sage Therapeutics

Sage Therapeutics is a corporate member with NPA; however, they neither provide or direct any content, nor do they impact the direction of any subgroups of NPA. Sage Therapeutics’ role as a corporate member is to provide financial support to NPA and support the education and training of PMADs. Partnerships with Sage Therapeutics began informally at the PSI conference in 2017. A delegate from NPA met with key stakeholders to review the NNNP’s structure, objectives, and contributions, including three writing groups (Training and Competencies, Research, and Advocacy). Through ongoing meetings with various regional representatives, Sage Therapeutics has agreed to sponsor a oneday PMAD provider conference to educate physicians, advanced practice nurses, nurses, social workers, and mental health providers in obstetric, primary care, and pediatric offices on how to screen for PMADs and make appropriate referrals. Sage Therapeutics has also agreed to co-sponsor a community provider training in Kansas City, Missouri to help obstetricians, gynecologists, primary care physicians, advanced practice nurses, nurses, pediatricians and other medical providers working with childbearing women, children, and families to understand, screen and appropriately refer for treatment of PMADs.

The Perinatal Mental Health Workgroup’s future plans include continuing to explore options for strategic partnerships as well as improve collaboration with smaller nonprofits, specifically family or parent lead organizations that provide support to NICU parents and families. The workgroup will continue to seek out strategic partnerships and disseminate information regarding best practices in the NICU setting. It is hoped that the Perinatal Mental Health Workgroup’s influence will extend internationally to provide best practice guidelines, resources, education to professionals, and support to families to continue to tackle the growing epidemic of perinatal mood and anxiety disorders.

References:

1. American Academy of Pediatrics. (2011). Newborn intensive care units (NICUs) and neonatologists of the USA & Canada. Rockville, MD: Neonatology Today.
2. Barr, P. (2010). Acute Traumatic Stress in Neonatal Intensive Care Unit Parents: Relation to Existential Emotion-Based Personality Predispositions. Journal of Loss and Trauma 15(2): 106-122.
3. Gavin, N.I., Gaynes, B.N., Lohr, K.N., Meltzer-Brody, S., Gartlehner, G. & Swinson, T. (2005) Perinatal depression: A systematic review of prevalence and incidence, Obstetrics & Gynecology, 106, 1071-1083.
4. History of PSI: Postpartum Support International (PSI). (n.d.). Retrieved August 20, 2019, from https://www.postpartum.net/ about-psi/history-of-psi/.
5. Hynan, M. T., Steinberg, Z., Baker, L., Cicco, R., Geller, P. A., Lassen, S., Milford, C., Mounts, K. O., Patterson, C., Saxton, S., Segre, L. & Steube, L. (2015). Recommendations for mental health professionals in the NICU. Journal of Perinatology, 35(S1), S14.
6. Lefkowitz, D.S., Baxt, C. & Evans, J.R. (2010) Prevalence and Correlates of posttraumatic stress and postpartum depression in parents of infants in the neonatal intensive care unit (NICU), Journal of Clinical Psychology in Medical Settings, 17, 230-237.
7. Lindahl, V., Pearson, J.L. & Colpe, L. (2005) Prevalence of suicidality during pregnancy and the postpartum, Archives of Women’s Mental Health, 8, 77-87.
8. Luca, D.L., Garlo, N., Staatz, C., Margiotta, C. & Zivin, K. (2019) Societal Costs of Untreated Perinatal Mood and Anxiety Disorders in California, Mathematica Policy Research Issue Brief.
9. Miles, M.S., Holditch-Davis, D., Schwartz, T.A. & Scher, M. (2007) Depressive symptoms in mothers of prematurely born infants, Journal of Developmental & Behavioral Pediatrics, 28, 36-44.
10. Miller, L. & LaRusso, E., (2011). Preventing Postpartum Depression, Psychiatric Clinics of N Am. 34:53-65 Epub. Dec. 2010. doi:10.1016/j.psc.2010.11.010
11. Moore, J., Smith, E.R., Adams, C. (2018) Innovation in Maternal Depression and Anxiety: Medicaid Initiatives in California and Nationwide, Institute for Medicaid Innovation.
12. Segre, L.S., McCabe, J.E., Chuffo-Siewert, R. & O’Hare, M.W. (2014) Depression and Anxiety Symptoms in Mothers of Newborns Hospitalized on the Neonatal Intensive Care Unit, Nursing Research, Volume 63, No. 5, 320-332.
13. Stein A., Pearson, R.M., Goodman, S.H., Rapa E., Rahman A., McCallum, M., Howard, L.M. & Pariante, C.M. (2014) Effects of perinatal mental disorders on the fetus and child, www. thelancet.com, Vol 384, 1800-1819.

Disclosure: The National Perinatal Association www.nationalperinatal.org is a 501c3 organization that provides education and advocacy around issues affecting the health of mothers, babies, and families.