Mental Health in the NICU: Barriers to Treatment & the Effect on the Whole Family

April 8, 2019

Any NICU parent will tell you that having a baby in the NICU is a stressful situation. And the research is behind us on that claim. Research has shown that NICU parents experience higher levels of stress than typical parents of healthy, term babies. When it comes to mental health in the NICU, it’s important to know who is at risk, how it impacts the whole family and what barriers families experience when it comes to treatment.

Who is at risk?

High levels of stress and depression can occur in both mothers and fathers. According to a study conducted in 2014, mothers of preterm babies are 40% more likely to develop postpartum depression (PPD) and are at risk for long-lasting mental health challenges. NICU mothers in particular are up to 70% more likely to experience PPD compared with mothers of healthy term infants outside of the NICU.¹ Research shows that NICU fathers are also at risk, occurring at a rate of 3-10%. More recent studies show that NICU fathers experience increasing stress levels in the 14 days after arriving home from the NICU, while the mother’s stress levels tended to decline.²

Additionally, Black and Latino families are disproportionately affected by prematurity and NICU stays for various complications. African Americans have at least twice the rate of preterm birth than that of whites, as well as the overall greatest risk of preterm birth.¹

Impact on the whole family

The mental well being of the NICU parent has an impact on the entire family, testing marriages, finances and relationships with other children.

Studies now show that NICU parents face their own long-lasting challenges, including mental health diagnoses such as anxiety disorders, depression and PTSD. These struggles may impact the parent’s ability to bond with their baby and can have devastating effects on the development of the baby. Infants with depressed parents have been shown to have differences in their own cognitive, behavioral and emotional development, and can increase the risk of a psychiatric diagnosis in the child later in life.

Studies also indicate that these mental health challenges can result in higher rates of divorce, child abuse and neglect.

Siblings of NICU babies are also impacted by a NICU stay. They may experience disruptions in regular schedules or routines, and of course they are not seeing Mom and Dad as much. They may feel they caused their baby brother or sister’s early birth, feel they did something to make Mom or Dad sad or unhappy, or fear for the baby’s wellbeing. It’s important that families try to maintain as much stability as possible for siblings during this stressful time.

Barriers to treatment

Unfortunately there are many emotional and societal barriers that prevent parents from getting the help they need.

Stigma

Negative attitudes and beliefs surrounding mental health are not uncommon and can lead to discrimination, but more importantly, they can prevent someone from getting the help they need for fear of being judged. People suffering from mental health conditions are often seen as unpredictable, different, weak or even dangerous.³ Those struggling with depression or other mental health conditions may fear that family and friends will avoid them or treat them negatively, or that disclosing a mental health condition at work can lead to negative treatment or perceptions.³

Others’ negative perceptions and judgement may be subtle or unintentional and stem from a lack of understanding of various mental health conditions. But they can create huge barriers to someone getting the help they need and deserve.

Poor understanding of mental health conditions

Some parents struggling with mental health conditions may not even recognize they need help. Their symptoms – stress, worry, anger, fear – may be dismissed as being normal for someone whose baby is in the NICU. If a parent doesn’t know something is wrong, it is unlikely they will seek treatment. In a study on mental illness (in the general population), the majority of participants either didn’t believe they had a problem requiring treatment, thought they could handle the problem themselves or thought their problem would get better on its own.³

It’s important that NICU parents understand how the NICU impacts their emotional health and recognize when to get help.

LISTEN: YOU ARE NOT ALONE – COPING WITH GUILT AND GRIEF IN THE NICU

Difficulty accessing services / financial barriers

There are many reasons someone may have difficulty accessing mental health services. An increase in demand for mental healthcare coupled with a shortage of mental health professionals means there are not enough providers to meet the needs of patients. Wait times can be even longer to see a psychiatrist or a specialist. Additionally, rural areas often have few to no mental healthcare providers at all, while providers in urban areas maintain long waiting lists. It can be months before a patient can get an appointment.³

Financial barriers also have an impact on a patient’s ability to access mental healthcare. According to Mental Health America, 12.2% (over 5.3 million) of adults with a mental illness remain uninsured.⁴ According to a recent article in the Chicago Tribune, “insurers often reimburse mental health care services at lower rates than other medical services, meaning fewer psychologists and psychiatrists can afford to accept insurance plans.”⁵ Patients seeking mental healthcare services often either cannot afford the treatments themselves, or they are forced to endure long waiting periods to see a provider who accepts their insurance, if they have it. Lack of healthcare insurance and the lack of availability of affordable services means many will endure long wait times or will end up not seeking treatment at all.

Racial barriers

Stigma, financial barriers and lack of mental healthcare providers negatively impact people of color as well, and at greater rates. As of 2014, 15.9% of Black/African Americans, versus 11.1% of white Americans were still uninsured in 2014. According to the Seleni Institute, African American women are less likely to receive treatment. Though there is a general stigma around mental health in the U.S., the stigma is even stronger in African American communities. According to the Seleni Institute, “A 2014 University of Houston study of low-income, African American new mothers found that many participants cited a community belief that ‘strong mothers’ don’t develop postpartum depression, and that admitting you felt depressed was risking being viewed as an unfit mother.”⁶ Furthermore, less than 2% of American Psychological Association members are Black/African American. Patients of color often worry that white healthcare practitioners “are not culturally competent enough to treat their specific issues.”⁷ This is compounded by the fact that some Black/African American patients have reported experiencing racism and microaggressions from therapists.⁸

Additional resources:

Postpartum Support International: Promotes awareness, prevention and treatment of mental health issues related to childbearing in every country worldwide.
Tessera Collective: Mental health empowerment for girls and women of color
Perinatal Mental Health Alliance for Women of Color: Provides a safe space for clients, families, and professionals of color around perinatal mental health.
The Problem with Motherhood: Personal website and blog of Motherhood Life Coach and postpartum depression survivor Graeme Seabrook.
The Postpartum Stress Center: Provides support and treatment for the pregnant or postpartum woman and her family as well as guidance for her treating physician or therapist.
The Seleni Institute: Treats, trains, supports, and advocates to improve the emotional health of individuals and their families during the family-building years.
The Blue Dot Project: Raises awareness of maternal mental health disorders and combats stigma and shame.