# data[].attributes.body
The March of Dimes conducts community walks to raise money for NICUs and their families.

# data[].attributes.attachment_link.title
Help us improve the health of all moms and babies

# data[].attributes.attachment_link.description
Join March of Dimes in our mission to prevent birth defects and premature birth. Learn about our research, advocacy, and resources for families.

# data[].attributes.attachment_link.description
Project NICU Connects with NICU parents and offers resources to support them during their journey both in the hospital and beyond including care packages, peer support and events.

# data[].attributes.attachment_link.description
Family Support for Fragile Beginnings... it's what every new parent needs when they are suddenly and unexpectedly thrown into a world turned upside down by the hospitalization of their baby in the neonatal intensive care unit (NICU).

# data[].attributes.body
Organization for neonatal nurses that provides information on how they can best help their patients and families.

# data[].attributes.attachment_link.description
NANN is a community of registered nursing professionals who care for infants born with a variety of health challenges and surgical problems.

# data[].attributes.attachment_link.readable_text
The birth of a baby is a wonderful and very complex process. Many physical and emotional changes occur for both mother and baby.

A baby must make many physical adjustments to life outside the mother's body. Leaving the uterus means that a baby can no longer depend on the mother's blood supply and placenta for important body functions.

Before birth, the baby depends on functions from the mother. These include breathing, eating, elimination of waste, and immune protection. When a baby leaves the womb, its body systems must change. For example:

The lungs must breathe air.

The cardiac and pulmonary circulation changes.

The digestive system must begin to process food and excrete waste.

The kidneys must begin working to balance fluids and chemicals in the body and excrete waste.

The liver and immune systems must begin working on their own.

Your baby's body systems must work together in a new way. In some cases, a baby has trouble making the transition outside the womb. Preterm birth, a difficult birth, or birth defects can make these changes more challenging. But a lot of special care is available to help newborn babies.

What is the neonatal intensive care unit (NICU)?

Newborn babies who need intensive medical care are often put in a special area of the hospital called the neonatal intensive care unit (NICU). The NICU has advanced technology and trained healthcare professionals to give special care for the tiniest patients. NICUs may also care areas for babies who are not as sick but do need specialized nursing care. Some hospitals don't have the staff for a NICU and babies must be moved to another hospital. Babies who need intensive care do better if they are born in a hospital with a NICU than if they are moved after birth.

Some newborn babies will require care in a NICU. Giving birth to a sick or premature baby can be unexpected for any parent. The NICU can be overwhelming. This information is to help you understand why a baby may need to be in the NICU. You will also find out about some of the procedures that may be needed for the care of your baby.

Which babies need special care?

Most babies admitted to the NICU are preterm (born before 37 weeks of pregnancy), have low birth weight (less than 5.5 pounds), or have a health condition that needs special care. In the U.S., nearly half a million babies are born preterm. Many of these babies also have low birth weights. Twins, triplets, and other multiples often are admitted to the NICU. This is because they tend to be born earlier and smaller than single birth babies. Babies with health conditions such as breathing trouble, heart problems, infections, or birth defects are also cared for in the NICU.

Below are some factors that can place a baby at high risk and increase the chances of being admitted to the NICU. But each baby must be assessed to see if he or she needs the NICU. High-risk factors include the below.

Maternal factors include:

Being younger than age 16 or older than age 40

Drug or alcohol use

High blood pressure (hypertension)

Sexually transmitted diseases

Multiple pregnancy (twins, triplets, or more)

Too little or too much amniotic fluid

Premature rupture of membranes (also called the amniotic sac or bag of waters)

Delivery factors include:

Changes in a baby's organ systems due to lack of oxygen (fetal distress or birth asphyxia)

Buttocks delivered first (breech birth) or other abnormal position

The baby's first stool (meconium) passed during pregnancy into the amniotic fluid

Umbilical cord wrapped around the baby's neck (nuchal cord)

Forceps or cesarean delivery

Baby factors include:

Baby born at gestational age of less than 37 weeks or more than 42 weeks

Birth weight less than 5 pounds, 8 ounces (2,500 grams) or over 8 pounds, 13 ounces (4,000 grams)

Small for gestational age

Medicine or resuscitation in the delivery room

Birth defects

Respiratory distress including rapid breathing, grunting, or stopping breathing (apnea)

Infection such as herpes, group B streptococcus, chlamydia

Low blood sugar (hypoglycemia)

Need for extra oxygen or monitoring, IV (intravenous) therapy, or medicines

Need for special treatment or procedures such as a blood transfusion

Who will care for your baby in the NICU?

Some of the specially-trained healthcare providers who may care for your baby include:

Neonatologist. This is a pediatrician with extra training in the care of sick and premature babies. The neonatologist (often called the attending physician) supervises pediatric fellows and residents, nurse practitioners, and nurses who care for babies in the NICU.

Neonatal fellow. This is a pediatrician getting extra training in the care of sick and premature babies. He or she may do procedures and direct your child's care.

Pediatric resident. This is a doctor who is getting extra training in the care of children. He or she may do or assist in procedures and help direct your child's care.

Neonatal nurse practitioner. This is a registered nurse with extra training in the care of newborn babies. He or she can do procedures and help direct your child's care.

Respiratory therapist. This is a person with special training in giving respiratory support. This includes managing breathing machines and oxygen.

Physical, occupational, and speech therapists. These types of therapists make sure a baby is developing well. They also help with care including positioning and soothing methods. Speech therapists help babies learn to eat by mouth.

Dietitians. Dietitians ensure the babies are growing well and getting good nutrition. They watch your baby's intake of calories, protein, vitamins, and minerals.

Lactation consultants. These are healthcare providers with extra training and certification in helping women and babies breastfeed. They can help with pumping, maintaining milk supply, and starting and continuing breastfeeding.

Pharmacists. Pharmacists help in the NICU by assisting the care providers choose the best medicines. They check medicine doses and levels. They keep the team aware of possible side effects and monitoring that may be needed.

Social workers. Social workers help families cope with many things when a child is ill. They give emotional support. They help families get information from healthcare providers. They support the family with other more basic care needs, too. These can include money problems, transportation, or arranging home healthcare.

Hospital chaplain. The hospital chaplain may be a priest, minister, lay pastor, or other religious advisor. The chaplain can give spiritual support and counseling to help families cope with the stress of the NICU.

NICU team members work together with parents to create a plan of care for high-risk newborns. Ask about the NICU's parent support groups and other programs designed to help parents.

# data[].attributes.attachment_link.description
NICUs provide specialized care for the tiniest patients. NICUs may also have intermediate or continuing care areas for babies who are not as sick but do need specialized nursing care.

# data[].attributes.body
The March of Dimes is an organization that advocates for families in the NICU by providing financial support and encouragement.

# data[].attributes.attachment_link.readable_text
When your baby's in the NICU, you're probably pretty stressed. Stress is worry, strain or pressure that you feel in response to things that happen in your life. You may be worried about your baby's condition and when you'll be able to take him home. Your relationship with your partner may be strained because this situation is new to both of you. You may feel pressure to be with your baby in the NICU instead of at work or home with other children. All these things cause stress.

When your baby's in the NICU, you may have a lot of different feelings. You may feel:

Scared about your baby's medical condition and what may happen to her in the future

Sad about your baby being in the hospital and not at home like you planned

Overwhelmed by responsibilities outside the NICU, like going to work, paying bills, taking care of other children and taking care of things at home

Angry about the changes that the NICU makes in your life and the loss of not just giving birth and taking your healthy baby home

Guilty that your baby's in the NICU

Helpless and frustrated because you can't do more to help your baby

Love and pride in your new baby

Happy about the progress your baby makes and the problems she overcomes

When your baby's in the NICU, there's no "normal" way to feel. You and your partner may feel differently. Know that many families who have had a baby born early or sick share the same kinds of feelings that you and your partner have.
How can you take care of yourself when your baby is in the NICU?
When your baby's in the NICU, it may be hard to think about taking care of yourself because you're so focused on your baby's needs. But taking care of yourself can help you stay well and have more energy to spend time with your baby.

Here's what you can do to help take care of yourself when your baby's in the NICU:

Stick to a daily routine. Every day, take a shower, eat healthy foods and regular meals, drink plenty of water, and get a good night's sleep. As part of your routine, decide when you want to be with your baby in the NICU.

Connect with other NICU families at NICU classes, in the family lounge or in the NICU hallway. They may understand how you're feeling better than friends and family who don't have the same experience. You can meet and talk with other NICU families on shareyourstory.org, the March of Dimes online community for families.

Take breaks from the NICU. It's OK to make time for yourself and your family.

Talk to a counselor. This may be someone from the NICU staff or a social worker or your religious or spiritual leader. Sometimes it's helpful to talk to someone other than your family and friends.

What can you do if you need to go back to work when your baby's in the NICU?
If you need to go back to work while your baby is still in the NICU, tell the NICU staff. Let them know your work schedule and when you plan to be with your baby. Before going back to work, talk about your schedule with your supervisor. Ask how you can get time off from work if you need to get to the NICU. Ask if you can work different hours so you can be with your baby when it's best for her.
How can friends and family members help when your baby's in the NICU?
It's OK to ask for help from your friends and family. Many of them want to help, but they don't always know how. Tell them exactly what they can do for you. For example, ask them to:

Bring a meal or snacks to you and your family at the hospital or at home

Do your grocery shopping or laundry or clean your home

Help with your older children

With your OK, share updates about your baby through blogs, email or social media

Drive you to and from the hospital

Go with you to meetings with your baby's providers at the hospital and take notes to help you remember what was said

Sit with your baby in the NICU so you can take a break if the NICU allows visitors to be with your baby without you). Or if you have more than one baby in different rooms in the NICU, they can sit with one while you're with the other.

What if you feel sad and overwhelmed when your baby's in the NICU?
You may be extra emotional when your baby's in the NICU. But there may be other reasons you feel sad. For example, you may have the baby blues. Baby blues are feelings of sadness many women have 3 to 5 days after having a baby. The feelings most likely are caused by all the hormones in your body right after pregnancy. You may feel sad or cranky, and you may cry a lot. These feelings usually go away about 10 days after your baby's birth. If they don't, tell your provider.

If you have more intense feelings of sadness or worry that last for a long time, you may have postpartum depression (also called PPD). PPD is different from the baby blues. It's a serious medical condition that needs treatment to get better. PPD often starts 1 to 3 weeks after having your baby, but it can happen any time in the first year of giving birth. Having a baby in the NICU can increase your risk for PPD. If you think you have PPD, tell your health care provider.

See also: shareyourstory.org
Last reviewed: February, 2017

# data[].attributes.attachment_link.description
Having a baby in the NICU can be stressful for parents. Take care of yourself so you can care for your baby.

# data[].attributes.attachment_link.readable_text
Post-traumatic stress disorder (PTSD) is defined as a person being exposed to a traumatic event that leads to symptoms of intrusive thoughts, persistent avoidance behaviors, mood alterations, and arousal alterations (Clottey & Dillard, 2013). Having an infant in the neonatal intensive care unit (NICU) can be an extremely traumatic and persisting experience for parents due to decreased social support, empowerment, and role competency, along with the stressful environment of the NICU (Clottey & Dillard, 2013; Sabnis et al., 2019).
PTSD Among NICU Parents
One of the most stressful periods for parents is when their infant is preparing to discharge home, due to lack of confidence and feeling unprepared (Garfield et al., 2018). High levels of unmanaged stress can lead parents and primary caregivers who take on a parental role to experience symptoms of PTSD 3 to 6 months after their infant is discharged home. This can result in negative developmental outcomes for the infant (Cook et al., 2018).
Preventing PTSD Among NICU Parents
Occupational therapists (OTs) working in the NICU play a unique role, as they can help to decrease parental stress by providing family-centered education and resources, and empower parents to fulfill their role as the infant's primary caregiver by utilizing a preventive approach (Sabnis et al., 2019). Additionally, OTs can educate parents on ways to take care of their infants' occupational needs at home, including bathing and feeding (American Occupational Therapy Association [AOTA], 2020). OTs can also bring awareness to topics such as PTSD and the importance of stress management techniques to prevent PTSD in the future. Utilizing a family-centered approach, OTs can help parents identify and incorporate positive stress management tools into their daily life to help decrease their stress levels (Sabnis et al., 2019). OTs can make a positive difference in these parents' lives by providing resources and social support, and taking the time to answer their questions, which in turn can increase parents' confidence and overall role competence as the primary caregiver (Garfield et al., 2018; Sabnis et al., 2019).

To provide support to parents with an infant in the NICU, Alyssa Adams, OTD, OTR/L, and the first author of this article, designed the Parent Education Empowerment Program (PEEP). PEEP is a one-on-one NICU educational program where parents are supported and empowered through education, resources (including a website), and follow-up educational and check-in sessions throughout the transition process home.
Program Description
The guiding goals of the program are to reduce the prevalence and incidence of PTSD among parents with infants discharging from the NICU, strengthen parents' involvement in their infant's transition home, and promote a family-centered approach where parents guide the educational process.

The initial PEEP included two sessions to help educate parents and provide them with resources to decrease their stress levels throughout the transition process. The first included an in-person, one-on-one educational session with the parents in the NICU, where they learned about discharge information from their OT. The second included a virtual one-on-one education and review session, where the parents described their transition home experiences by completing a survey that included open-ended questions. Additionally, Adams provided follow-up education and answered parents' questions.

The guiding tool for this education is a public website that Adams created. Topics focus on information parents learn from their OTs throughout their babies' NICU stay, including bottle-feeding, breastfeeding, transitioning to solid foods, swaddled bathing, safe sleep, tummy time, infant massage, developmental milestones, creating routines, and mental health and wellness. The mental health and wellness section provides information about PTSD, associated signs and symptoms, and information on proper stress management techniques. Adams posted current NICU therapy handouts on the website and created original "how to" videos using Windows 10 Movie Maker (Microsoft, 2021) and smartphone videos. She also included pictures for the parents as examples. Some images were obtained from the Internet as cited pictures, while others were taken of current and previous NICU babies. Parents signed a consent form that was included in their infant's chart.
Session Details
The first session in the NICU lasted between 30 and 60 minutes. Parents were provided with discharge education utilizing the PEEP website, participated in a semi-structured interview, and received answers to their questions from Adams.

The second session, a semi-structured interview, self-report survey, follow up education, and answers to their questions by Dr. Adams, occurred 2 weeks after discharge over video conference, phone call, or email for 30 to 60 minutes. They discussed the transition process home and how the website supported them and their stress levels. The second session, which many parents allowed to be recorded, was not as easy to implement because some parents did not answer their phone or email. The 2-week follow up was created for Adams to meet specific deadlines, but we learned that this session should happen later in the PEEP process to allow parents time to create a routine at home.
Program Outcomes
The three goals of PEEP were evaluated and analyzed through both quantitative and qualitative methods, including semi-structured interviews and surveys completed through both the first and second sessions. All three program goals were achieved (see Table 1).

Many parents also reported that because of Adams providing them with education, empowerment, and resources, they felt more confident to fulfill their role as the primary caregiver at home, demonstrating the importance of how OTs can help improve parents' confidence and decrease their stress after infant transitions. This reflects the importance of OTs utilizing a family-centered approach in practice allowing parents to feel supported and empowered to take an active role on the interdisciplinary team (Sabnis et al., 2019).
Case Examples
Eight families participated in the initial PEEP, and each family had unique experiences within the NICU. The following case examples demonstrate the different positive results that came from PEEP, regardless of each family's circumstances.
Rodrigo Family
The Rodrigo mother had fraternal twins who were born 4 weeks and 2 days prematurely. Twin B was in the NICU for 2 weeks and 5 days, while Twin A was there for 3 weeks and 1 day. Twin A's conditions included respiratory distress syndrome (RDS), hypoglycemia, and difficulties regulating body temperature. Twin B's conditions were difficulties feeding and late prematurity. The Rodrigo mother had 10 other children at home. During session one, she said that she felt the website would be helpful for her to use at home. She received extensive education on stress management which she said helped to decrease her high stress levels. She felt very confident in her ability to take care of her infants at home. At the end of session one, she had many questions which Adams answered. The Rodrigo mother reported feeling appreciative to have a website so readily available.

For session two, the Rodrigo mother participated in a phone interview. She reported that the transition home went well and how learning about ways to help her infants at home and have a resource website to refer to supported her and helped decrease her stress levels. "It helped me learn about things that I did not do much of with my other kids, and just knowing I have a resource there if I need help is good."
Harmon Family
The Harmon infant was born 9 weeks and 1 day premature and was in the NICU for 8 weeks and 1 day. Baby Harmon's other conditions included RDS, apnea of prematurity, and Group B streptococcal disease. The mother participated in PEEP and reported that she was a teen mom and baby Harmon was her first child. In the first session, the Harmon mother reported that she felt that the website would be helpful at home because of its accessibility and that she felt very confident in her ability to take care of baby Harmon at home.

For session two, the Harmon mother met with Adams via a video conference and reported that the transition home went a lot smoother than she had anticipated. The website "definitely made me feel a lot more comfortable to come home. It gave me kind of like a safety net." PEEP helped to decrease her stress and to feel supported. "Knowing that I would be able to just go back onto that website and not have to worry about remembering everything, it was super reassuring and it helped me."
Pearson Family
The Pearson parents are adoptive parents to baby Pearson. Baby Pearson was born at 38 weeks gestation and diagnosed with neonatal abstinence syndrome. His biological mother had no prenatal care. He was in the NICU for 1 week and 4 days. Both parents participated in both sessions of PEEP and reported that baby Pearson is their first child. In session one, the parents reported that they felt the website was going to be a helpful tool for them to use at home because they could search for any questions they might have. They discussed how they appreciated learning about health and wellness because the week in the NICU was stressful and they needed the reminder to take care of themselves. They reported feeling confident that they could take care of baby Pearson at home.

The Pearson parents participated in session two via a video conference. They discussed how their transition home was "easier than they thought" and the PEEP website was a great resource for them. The Pearson father explained how "when I'm about to go Google something, I'll go check and see if I can find it on the website first." They appreciated having a reliable resource readily available to them. Both parents discussed how the website helped to decrease their stress levels and made them feel supported.
Implications for OT
PEEP helps to empower, educate, and support parents throughout the transition process home from the NICU through a unique educational resource website designed to help decrease their stress levels. Adams continues to make updates to the PEEP website, and many NICU therapists utilize the program in their daily practice to help NICU families. Providing parents with empowerment through education, support, and electronic resources on how to take care of their infants' occupational needs can help them gain increased role competence (AOTA, 2020). Additionally, providing education on PTSD and stress management techniques helps to decrease PTSD symptoms. In turn, parents have more meaningful and positive interactions with their infant, resulting in better infant growth and development. Parental participation in evidence-based parent education empowerment programs such as PEEP helps parents decrease their stress levels, feel supported throughout the transition process, and become empowered to fulfill their role as a parent.
References
American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy, 74(Suppl. 2), 7412410010. https://doi.org/10.5014/ajot.2020.74S2001

Clottey, M., & Dillard, D. M. (2013). Post-traumatic stress disorder and neonatal intensive care. International Journal of Childbirth Education, 28(3), 23-30.

Cook, N., Ayers, S., & Horsch, A. (2018). Maternal posttraumatic stress disorder during the perinatal period and child outcomes: A systematic review. Journal of Affective Disorders, 225, 18-31. https://doi.org/10.1016/j.jad.2017.07.045

Garfield, C. F., Simon, C. D., Rutsohn, J., & Lee, Y. S. (2018). Stress from the neonatal intensive care unit to home: Paternal and maternal cortisol rhythms in parents of premature infants. Journal of Perinatology Neonatal Nursing, 32(3), 257-265. http://doi.org/10.1097/JPN.0000000000000296

Microsoft. (2021). Movie Maker-Video Editor. https://www.microsoft.com/en-us/p/movie-maker-video-editor/9mvfq4lmz6c9?activetab=pivot:overviewtab

Sabnis, A., Fojo, S., Nayak, S. S., Lopez, E., Tarn, D. M., & Zeltzer, L. (2019). Reducing parental trauma and stress in neonatal intensive care: Systematic review and meta-analysis of hospital interventions. Journal of Perinatology, 39(3), 375-386. https://doi.org/10.1038/s41372-018-0310-9

Alyssa Adams, OTD, OTR/L, is an occupational therapist who graduated from Touro University Nevada. She completed a Level II Fieldwork and Doctoral Capstone Program at a NICU in Las Vegas where she developed a passion for working with neonates and their families.

Cynthia Lau, PhD, OTR/L, BCP, FAOTA, has taught occupational therapy at Touro University since 2005. She involves students in scholarly projects such as research, systematic reviews, and publication related to children with disabilities.

Jennifer Coon, MSOT, OTR/L, CNT, is an occupational therapist working in the NICU at Spring Valley Hospital in Las Vegas. She earned her Certified Neonatal Therapist designation in February of 2019 and has taught courses on neonatal therapy.

For more information

Online Course-OT's Contribution to Early Identification: Module 2-Caregiver-Infant Relationship
K. Hildebrand, 2014. American Occupational Therapy Association.
Earn .2 AOTACEU (2.5 NBCOT PDUs, 2 contact hours).
$75 for members, $99 for nonmembers.

Online Course-Coaching Interventions, Team Models, and Approaches in Early Intervention, 2nd edition
K. Barnekow, A. Stoffel, & A. Kapellusch, 2018. American Occupational Therapy Association.
Earn .075 AOTA CEU (1NBCOT PDU, .75 contact hours).
$19.95 for members, $34.95 for nonmembers.

Occupational Therapy Practice Guidelines for Early Childhood: Birth Through 5 Years
G. Clark & K. Kingsley, 2013. AOTA Press.
eBook: $49 for members, $89 for nonmembers.

Post-traumatic stress disorder (PTSD) is defined as a person being exposed to a traumatic event that leads to symptoms of intrusive thoughts, persistent avoidance behaviors, mood alterations, and arousal alterations (Clottey & Dillard, 2013). Having an infant in the neonatal intensive care unit (NICU) can be an extremely traumatic and persisting experience for parents due to decreased social support, empowerment, and role competency, along with the stressful environment of the NICU (Clottey & Dillard, 2013; Sabnis et al., 2019).
PTSD Among NICU Parents
One of the most stressful periods for parents is when their infant is preparing to discharge home, due to lack of confidence and feeling unprepared (Garfield et al., 2018). High levels of unmanaged stress can lead parents and primary caregivers who take on a parental role to experience symptoms of PTSD 3 to 6 months after their infant is discharged home. This can result in negative developmental outcomes for the infant (Cook et al., 2018).
Preventing PTSD Among NICU Parents
Occupational therapists (OTs) working in the NICU play a unique role, as they can help to decrease parental stress by providing family-centered education and resources, and empower parents to fulfill their role as the infant's primary caregiver by utilizing a preventive approach (Sabnis et al., 2019). Additionally, OTs can educate parents on ways to take care of their infants' occupational needs at home, including bathing and feeding (American Occupational Therapy Association [AOTA], 2020). OTs can also bring awareness to topics such as PTSD and the importance of stress management techniques to prevent PTSD in the future. Utilizing a family-centered approach, OTs can help parents identify and incorporate positive stress management tools into their daily life to help decrease their stress levels (Sabnis et al., 2019). OTs can make a positive difference in these parents' lives by providing resources and social support, and taking the time to answer their questions, which in turn can increase parents' confidence and overall role competence as the primary caregiver (Garfield et al., 2018; Sabnis et al., 2019).

To provide support to parents with an infant in the NICU, Alyssa Adams, OTD, OTR/L, and the first author of this article, designed the Parent Education Empowerment Program (PEEP). PEEP is a one-on-one NICU educational program where parents are supported and empowered through education, resources (including a website), and follow-up educational and check-in sessions throughout the transition process home.
Program Description
The guiding goals of the program are to reduce the prevalence and incidence of PTSD among parents with infants discharging from the NICU, strengthen parents' involvement in their infant's transition home, and promote a family-centered approach where parents guide the educational process.

The initial PEEP included two sessions to help educate parents and provide them with resources to decrease their stress levels throughout the transition process. The first included an in-person, one-on-one educational session with the parents in the NICU, where they learned about discharge information from their OT. The second included a virtual one-on-one education and review session, where the parents described their transition home experiences by completing a survey that included open-ended questions. Additionally, Adams provided follow-up education and answered parents' questions.

The guiding tool for this education is a public website that Adams created. Topics focus on information parents learn from their OTs throughout their babies' NICU stay, including bottle-feeding, breastfeeding, transitioning to solid foods, swaddled bathing, safe sleep, tummy time, infant massage, developmental milestones, creating routines, and mental health and wellness. The mental health and wellness section provides information about PTSD, associated signs and symptoms, and information on proper stress management techniques. Adams posted current NICU therapy handouts on the website and created original "how to" videos using Windows 10 Movie Maker (Microsoft, 2021) and smartphone videos. She also included pictures for the parents as examples. Some images were obtained from the Internet as cited pictures, while others were taken of current and previous NICU babies. Parents signed a consent form that was included in their infant's chart.
Session Details
The first session in the NICU lasted between 30 and 60 minutes. Parents were provided with discharge education utilizing the PEEP website, participated in a semi-structured interview, and received answers to their questions from Adams.

The second session, a semi-structured interview, self-report survey, follow up education, and answers to their questions by Dr. Adams, occurred 2 weeks after discharge over video conference, phone call, or email for 30 to 60 minutes. They discussed the transition process home and how the website supported them and their stress levels. The second session, which many parents allowed to be recorded, was not as easy to implement because some parents did not answer their phone or email. The 2-week follow up was created for Adams to meet specific deadlines, but we learned that this session should happen later in the PEEP process to allow parents time to create a routine at home.
Program Outcomes
The three goals of PEEP were evaluated and analyzed through both quantitative and qualitative methods, including semi-structured interviews and surveys completed through both the first and second sessions. All three program goals were achieved (see Table 1).

Many parents also reported that because of Adams providing them with education, empowerment, and resources, they felt more confident to fulfill their role as the primary caregiver at home, demonstrating the importance of how OTs can help improve parents' confidence and decrease their stress after infant transitions. This reflects the importance of OTs utilizing a family-centered approach in practice allowing parents to feel supported and empowered to take an active role on the interdisciplinary team (Sabnis et al., 2019).
Case Examples
Eight families participated in the initial PEEP, and each family had unique experiences within the NICU. The following case examples demonstrate the different positive results that came from PEEP, regardless of each family's circumstances.
Rodrigo Family
The Rodrigo mother had fraternal twins who were born 4 weeks and 2 days prematurely. Twin B was in the NICU for 2 weeks and 5 days, while Twin A was there for 3 weeks and 1 day. Twin A's conditions included respiratory distress syndrome (RDS), hypoglycemia, and difficulties regulating body temperature. Twin B's conditions were difficulties feeding and late prematurity. The Rodrigo mother had 10 other children at home. During session one, she said that she felt the website would be helpful for her to use at home. She received extensive education on stress management which she said helped to decrease her high stress levels. She felt very confident in her ability to take care of her infants at home. At the end of session one, she had many questions which Adams answered. The Rodrigo mother reported feeling appreciative to have a website so readily available.

For session two, the Rodrigo mother participated in a phone interview. She reported that the transition home went well and how learning about ways to help her infants at home and have a resource website to refer to supported her and helped decrease her stress levels. "It helped me learn about things that I did not do much of with my other kids, and just knowing I have a resource there if I need help is good."
Harmon Family
The Harmon infant was born 9 weeks and 1 day premature and was in the NICU for 8 weeks and 1 day. Baby Harmon's other conditions included RDS, apnea of prematurity, and Group B streptococcal disease. The mother participated in PEEP and reported that she was a teen mom and baby Harmon was her first child. In the first session, the Harmon mother reported that she felt that the website would be helpful at home because of its accessibility and that she felt very confident in her ability to take care of baby Harmon at home.

For session two, the Harmon mother met with Adams via a video conference and reported that the transition home went a lot smoother than she had anticipated. The website "definitely made me feel a lot more comfortable to come home. It gave me kind of like a safety net." PEEP helped to decrease her stress and to feel supported. "Knowing that I would be able to just go back onto that website and not have to worry about remembering everything, it was super reassuring and it helped me."
Pearson Family
The Pearson parents are adoptive parents to baby Pearson. Baby Pearson was born at 38 weeks gestation and diagnosed with neonatal abstinence syndrome. His biological mother had no prenatal care. He was in the NICU for 1 week and 4 days. Both parents participated in both sessions of PEEP and reported that baby Pearson is their first child. In session one, the parents reported that they felt the website was going to be a helpful tool for them to use at home because they could search for any questions they might have. They discussed how they appreciated learning about health and wellness because the week in the NICU was stressful and they needed the reminder to take care of themselves. They reported feeling confident that they could take care of baby Pearson at home.

The Pearson parents participated in session two via a video conference. They discussed how their transition home was "easier than they thought" and the PEEP website was a great resource for them. The Pearson father explained how "when I'm about to go Google something, I'll go check and see if I can find it on the website first." They appreciated having a reliable resource readily available to them. Both parents discussed how the website helped to decrease their stress levels and made them feel supported.
Implications for OT
PEEP helps to empower, educate, and support parents throughout the transition process home from the NICU through a unique educational resource website designed to help decrease their stress levels. Adams continues to make updates to the PEEP website, and many NICU therapists utilize the program in their daily practice to help NICU families. Providing parents with empowerment through education, support, and electronic resources on how to take care of their infants' occupational needs can help them gain increased role competence (AOTA, 2020). Additionally, providing education on PTSD and stress management techniques helps to decrease PTSD symptoms. In turn, parents have more meaningful and positive interactions with their infant, resulting in better infant growth and development. Parental participation in evidence-based parent education empowerment programs such as PEEP helps parents decrease their stress levels, feel supported throughout the transition process, and become empowered to fulfill their role as a parent.
References
American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy, 74(Suppl. 2), 7412410010. https://doi.org/10.5014/ajot.2020.74S2001

Clottey, M., & Dillard, D. M. (2013). Post-traumatic stress disorder and neonatal intensive care. International Journal of Childbirth Education, 28(3), 23-30.

Cook, N., Ayers, S., & Horsch, A. (2018). Maternal posttraumatic stress disorder during the perinatal period and child outcomes: A systematic review. Journal of Affective Disorders, 225, 18-31. https://doi.org/10.1016/j.jad.2017.07.045

Garfield, C. F., Simon, C. D., Rutsohn, J., & Lee, Y. S. (2018). Stress from the neonatal intensive care unit to home: Paternal and maternal cortisol rhythms in parents of premature infants. Journal of Perinatology Neonatal Nursing, 32(3), 257-265. http://doi.org/10.1097/JPN.0000000000000296

Microsoft. (2021). Movie Maker-Video Editor. https://www.microsoft.com/en-us/p/movie-maker-video-editor/9mvfq4lmz6c9?activetab=pivot:overviewtab

Sabnis, A., Fojo, S., Nayak, S. S., Lopez, E., Tarn, D. M., & Zeltzer, L. (2019). Reducing parental trauma and stress in neonatal intensive care: Systematic review and meta-analysis of hospital interventions. Journal of Perinatology, 39(3), 375-386. https://doi.org/10.1038/s41372-018-0310-9

Alyssa Adams, OTD, OTR/L, is an occupational therapist who graduated from Touro University Nevada. She completed a Level II Fieldwork and Doctoral Capstone Program at a NICU in Las Vegas where she developed a passion for working with neonates and their families.

Cynthia Lau, PhD, OTR/L, BCP, FAOTA, has taught occupational therapy at Touro University since 2005. She involves students in scholarly projects such as research, systematic reviews, and publication related to children with disabilities.

Jennifer Coon, MSOT, OTR/L, CNT, is an occupational therapist working in the NICU at Spring Valley Hospital in Las Vegas. She earned her Certified Neonatal Therapist designation in February of 2019 and has taught courses on neonatal therapy.

For more information

Online Course-OT's Contribution to Early Identification: Module 2-Caregiver-Infant Relationship
K. Hildebrand, 2014. American Occupational Therapy Association.
Earn .2 AOTACEU (2.5 NBCOT PDUs, 2 contact hours).
$75 for members, $99 for nonmembers.

Online Course-Coaching Interventions, Team Models, and Approaches in Early Intervention, 2nd edition
K. Barnekow, A. Stoffel, & A. Kapellusch, 2018. American Occupational Therapy Association.
Earn .075 AOTA CEU (1NBCOT PDU, .75 contact hours).
$19.95 for members, $34.95 for nonmembers.

Occupational Therapy Practice Guidelines for Early Childhood: Birth Through 5 Years
G. Clark & K. Kingsley, 2013. AOTA Press.
eBook: $49 for members, $89 for nonmembers.

Post-traumatic stress disorder (PTSD) is defined as a person being exposed to a traumatic event that leads to symptoms of intrusive thoughts, persistent avoidance behaviors, mood alterations, and arousal alterations (Clottey & Dillard, 2013). Having an infant in the neonatal intensive care unit (NICU) can be an extremely traumatic and persisting experience for parents due to decreased social support, empowerment, and role competency, along with the stressful environment of the NICU (Clottey & Dillard, 2013; Sabnis et al., 2019).
PTSD Among NICU Parents
One of the most stressful periods for parents is when their infant is preparing to discharge home, due to lack of confidence and feeling unprepared (Garfield et al., 2018). High levels of unmanaged stress can lead parents and primary caregivers who take on a parental role to experience symptoms of PTSD 3 to 6 months after their infant is discharged home. This can result in negative developmental outcomes for the infant (Cook et al., 2018).
Preventing PTSD Among NICU Parents
Occupational therapists (OTs) working in the NICU play a unique role, as they can help to decrease parental stress by providing family-centered education and resources, and empower parents to fulfill their role as the infant's primary caregiver by utilizing a preventive approach (Sabnis et al., 2019). Additionally, OTs can educate parents on ways to take care of their infants' occupational needs at home, including bathing and feeding (American Occupational Therapy Association [AOTA], 2020). OTs can also bring awareness to topics such as PTSD and the importance of stress management techniques to prevent PTSD in the future. Utilizing a family-centered approach, OTs can help parents identify and incorporate positive stress management tools into their daily life to help decrease their stress levels (Sabnis et al., 2019). OTs can make a positive difference in these parents' lives by providing resources and social support, and taking the time to answer their questions, which in turn can increase parents' confidence and overall role competence as the primary caregiver (Garfield et al., 2018; Sabnis et al., 2019).

To provide support to parents with an infant in the NICU, Alyssa Adams, OTD, OTR/L, and the first author of this article, designed the Parent Education Empowerment Program (PEEP). PEEP is a one-on-one NICU educational program where parents are supported and empowered through education, resources (including a website), and follow-up educational and check-in sessions throughout the transition process home.
Program Description
The guiding goals of the program are to reduce the prevalence and incidence of PTSD among parents with infants discharging from the NICU, strengthen parents' involvement in their infant's transition home, and promote a family-centered approach where parents guide the educational process.

The initial PEEP included two sessions to help educate parents and provide them with resources to decrease their stress levels throughout the transition process. The first included an in-person, one-on-one educational session with the parents in the NICU, where they learned about discharge information from their OT. The second included a virtual one-on-one education and review session, where the parents described their transition home experiences by completing a survey that included open-ended questions. Additionally, Adams provided follow-up education and answered parents' questions.

The guiding tool for this education is a public website that Adams created. Topics focus on information parents learn from their OTs throughout their babies' NICU stay, including bottle-feeding, breastfeeding, transitioning to solid foods, swaddled bathing, safe sleep, tummy time, infant massage, developmental milestones, creating routines, and mental health and wellness. The mental health and wellness section provides information about PTSD, associated signs and symptoms, and information on proper stress management techniques. Adams posted current NICU therapy handouts on the website and created original "how to" videos using Windows 10 Movie Maker (Microsoft, 2021) and smartphone videos. She also included pictures for the parents as examples. Some images were obtained from the Internet as cited pictures, while others were taken of current and previous NICU babies. Parents signed a consent form that was included in their infant's chart.
Session Details
The first session in the NICU lasted between 30 and 60 minutes. Parents were provided with discharge education utilizing the PEEP website, participated in a semi-structured interview, and received answers to their questions from Adams.

The second session, a semi-structured interview, self-report survey, follow up education, and answers to their questions by Dr. Adams, occurred 2 weeks after discharge over video conference, phone call, or email for 30 to 60 minutes. They discussed the transition process home and how the website supported them and their stress levels. The second session, which many parents allowed to be recorded, was not as easy to implement because some parents did not answer their phone or email. The 2-week follow up was created for Adams to meet specific deadlines, but we learned that this session should happen later in the PEEP process to allow parents time to create a routine at home.
Program Outcomes
The three goals of PEEP were evaluated and analyzed through both quantitative and qualitative methods, including semi-structured interviews and surveys completed through both the first and second sessions. All three program goals were achieved (see Table 1).

Many parents also reported that because of Adams providing them with education, empowerment, and resources, they felt more confident to fulfill their role as the primary caregiver at home, demonstrating the importance of how OTs can help improve parents' confidence and decrease their stress after infant transitions. This reflects the importance of OTs utilizing a family-centered approach in practice allowing parents to feel supported and empowered to take an active role on the interdisciplinary team (Sabnis et al., 2019).
Case Examples
Eight families participated in the initial PEEP, and each family had unique experiences within the NICU. The following case examples demonstrate the different positive results that came from PEEP, regardless of each family's circumstances.
Rodrigo Family
The Rodrigo mother had fraternal twins who were born 4 weeks and 2 days prematurely. Twin B was in the NICU for 2 weeks and 5 days, while Twin A was there for 3 weeks and 1 day. Twin A's conditions included respiratory distress syndrome (RDS), hypoglycemia, and difficulties regulating body temperature. Twin B's conditions were difficulties feeding and late prematurity. The Rodrigo mother had 10 other children at home. During session one, she said that she felt the website would be helpful for her to use at home. She received extensive education on stress management which she said helped to decrease her high stress levels. She felt very confident in her ability to take care of her infants at home. At the end of session one, she had many questions which Adams answered. The Rodrigo mother reported feeling appreciative to have a website so readily available.

For session two, the Rodrigo mother participated in a phone interview. She reported that the transition home went well and how learning about ways to help her infants at home and have a resource website to refer to supported her and helped decrease her stress levels. "It helped me learn about things that I did not do much of with my other kids, and just knowing I have a resource there if I need help is good."
Harmon Family
The Harmon infant was born 9 weeks and 1 day premature and was in the NICU for 8 weeks and 1 day. Baby Harmon's other conditions included RDS, apnea of prematurity, and Group B streptococcal disease. The mother participated in PEEP and reported that she was a teen mom and baby Harmon was her first child. In the first session, the Harmon mother reported that she felt that the website would be helpful at home because of its accessibility and that she felt very confident in her ability to take care of baby Harmon at home.

For session two, the Harmon mother met with Adams via a video conference and reported that the transition home went a lot smoother than she had anticipated. The website "definitely made me feel a lot more comfortable to come home. It gave me kind of like a safety net." PEEP helped to decrease her stress and to feel supported. "Knowing that I would be able to just go back onto that website and not have to worry about remembering everything, it was super reassuring and it helped me."
Pearson Family
The Pearson parents are adoptive parents to baby Pearson. Baby Pearson was born at 38 weeks gestation and diagnosed with neonatal abstinence syndrome. His biological mother had no prenatal care. He was in the NICU for 1 week and 4 days. Both parents participated in both sessions of PEEP and reported that baby Pearson is their first child. In session one, the parents reported that they felt the website was going to be a helpful tool for them to use at home because they could search for any questions they might have. They discussed how they appreciated learning about health and wellness because the week in the NICU was stressful and they needed the reminder to take care of themselves. They reported feeling confident that they could take care of baby Pearson at home.

The Pearson parents participated in session two via a video conference. They discussed how their transition home was "easier than they thought" and the PEEP website was a great resource for them. The Pearson father explained how "when I'm about to go Google something, I'll go check and see if I can find it on the website first." They appreciated having a reliable resource readily available to them. Both parents discussed how the website helped to decrease their stress levels and made them feel supported.
Implications for OT
PEEP helps to empower, educate, and support parents throughout the transition process home from the NICU through a unique educational resource website designed to help decrease their stress levels. Adams continues to make updates to the PEEP website, and many NICU therapists utilize the program in their daily practice to help NICU families. Providing parents with empowerment through education, support, and electronic resources on how to take care of their infants' occupational needs can help them gain increased role competence (AOTA, 2020). Additionally, providing education on PTSD and stress management techniques helps to decrease PTSD symptoms. In turn, parents have more meaningful and positive interactions with their infant, resulting in better infant growth and development. Parental participation in evidence-based parent education empowerment programs such as PEEP helps parents decrease their stress levels, feel supported throughout the transition process, and become empowered to fulfill their role as a parent.
References
American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy, 74(Suppl. 2), 7412410010. https://doi.org/10.5014/ajot.2020.74S2001

Clottey, M., & Dillard, D. M. (2013). Post-traumatic stress disorder and neonatal intensive care. International Journal of Childbirth Education, 28(3), 23-30.

Cook, N., Ayers, S., & Horsch, A. (2018). Maternal posttraumatic stress disorder during the perinatal period and child outcomes: A systematic review. Journal of Affective Disorders, 225, 18-31. https://doi.org/10.1016/j.jad.2017.07.045

Garfield, C. F., Simon, C. D., Rutsohn, J., & Lee, Y. S. (2018). Stress from the neonatal intensive care unit to home: Paternal and maternal cortisol rhythms in parents of premature infants. Journal of Perinatology Neonatal Nursing, 32(3), 257-265. http://doi.org/10.1097/JPN.0000000000000296

Microsoft. (2021). Movie Maker-Video Editor. https://www.microsoft.com/en-us/p/movie-maker-video-editor/9mvfq4lmz6c9?activetab=pivot:overviewtab

Sabnis, A., Fojo, S., Nayak, S. S., Lopez, E., Tarn, D. M., & Zeltzer, L. (2019). Reducing parental trauma and stress in neonatal intensive care: Systematic review and meta-analysis of hospital interventions. Journal of Perinatology, 39(3), 375-386. https://doi.org/10.1038/s41372-018-0310-9

Alyssa Adams, OTD, OTR/L, is an occupational therapist who graduated from Touro University Nevada. She completed a Level II Fieldwork and Doctoral Capstone Program at a NICU in Las Vegas where she developed a passion for working with neonates and their families.

Cynthia Lau, PhD, OTR/L, BCP, FAOTA, has taught occupational therapy at Touro University since 2005. She involves students in scholarly projects such as research, systematic reviews, and publication related to children with disabilities.

Jennifer Coon, MSOT, OTR/L, CNT, is an occupational therapist working in the NICU at Spring Valley Hospital in Las Vegas. She earned her Certified Neonatal Therapist designation in February of 2019 and has taught courses on neonatal therapy.

# data[].attributes.attachment_link.title
NICU Parent Educational Empowerment Program | AOTA

# data[].attributes.attachment_link.description
Parent Education Empowerment Program helps to empower, educate, and support parents throughout the transition process home from the NICU through a unique educational resource website designed to help decrease their stress levels.

# data[].attributes.attachment_link.title
Hillcrest NICU Nurse Understands Parent Experience

# data[].attributes.attachment_link.readable_text
How to actually offer support - including what not to do

Parents who have a baby in the neonatal intensive care unit (NICU) are under a lot of stress. They're not only worried about the health and well-being of their newborn, they're also navigating the physical and emotional difficulties of hospital life: lost sleep, financial worries, transportation logistics, and the balance between work and other family responsibilities.

And while doctors and nurses are monitoring their child 24/7, all too often there's no one watching out for mom and dad. If you have a friend, relative, or coworker who's going through this difficult time, there are things you can do to help.

Of course, every parent's situation is different, and everyone will react differently to well-meaning words or actions. But here are some basic do's and don'ts straight from the experts and parents who have been there.

Do real favors. "What I found the most helpful was that my mother-in-law took care of us as opposed to taking care of the baby," says Elisette Carlson, whose son Andrew was born three weeks premature, spent 11 days in the NICU, and then required close monitoring at home. "She knew what food we liked, she bought us groceries, she cleaned our house. It made it that much easier to focus my attention on my son, where it needed to be."

Don't wait to be asked. Psychotherapist Sarah Best, LCSW, agrees that the best thing friends and family can do is offer very practical support - without being asked. "Don't just say, 'Let me know if there's anything I can do,'" she says. "When you're in the midst of a health crisis, you often don't have the energy to ask for help, or you think you can do it all yourself." Instead, offer a few ways concrete ways to help (organizing a carpool, doing a load of laundry, taking care of a pet) and then ask what would be the most helpful.

Do listen and offer a shoulder to cry on. Let your loved one know you're there for them if they need to talk, and that you're willing to listen to anything and everything they're thinking. "Parents need to know that whatever emotions they're feeling are normal, and that they're not going to be judged for them," says Kelli Kelley, founder of the nonprofit Hand to Hold and mother of two NICU graduates.

Don't trivialize their situation. You may think that bringing up stories of other families who had a worse experience might help a parent feel better, but it can have the opposite effect. "The very worst thing anyone can do is minimize the intensity of what someone is experiencing," says Best. "Saying things like, 'Just be grateful he's alive,' or 'I know someone whose baby was born even earlier,' may be said with the best intentions, but ultimately it says, 'I'm not taking your experience seriously.'"

Do call and visit. Spending so much time in the hospital can be lonely and exhausting, says Amber Matyi, whose son Luca was delivered four weeks early and spent 24 days in the NICU. She wishes she had asked loved ones to come and sit with the baby so she could get some rest or take a break. "I felt like I needed to be the person who did everything, and I didn't want Luca to ever be alone," she says. "But I didn't realize until my body couldn't take it anymore that it didn't necessarily have to be me - that other people can take a turn too so I could take care of myself for a little bit."

Don't stop after the first few weeks. When newborns are sent to the NICU, it can be weeks or even months before they're healthy enough to leave. "Families get a lot of concern when their babies are first born, but by week three or week six, that initial frenzy has died down," says Best. "They're still driving to and from the hospital while everyone else has moved on with their lives." She encourages friends and family to check in throughout the entire NICU process. Your help will be appreciated just as much (or more) down the road.

Do follow up once they're home. Even when NICU babies come home, they may still have weakened immune systems, many doctor's appointments, and other health challenges that require special care. Plus, mom and dad may still be dealing with serious emotional strain. "I've worked with countless women whose friends say, 'The baby's home; time to put it behind you and move on,'" says Best. "But often, mom is still feeling stressed and helpless, like something bad could happen at any minute. It's not something you just get over right away."

Don't neglect their emotional health. Mothers of NICU babies are at a higher risk for mood and anxiety disorders, such as postpartum depression and post-traumatic stress disorder. Friends and family can help recognize symptoms and may be able to persuade a mom to see a mental health professional. "Things like irritable mood, angry outbursts, feeling really on edge all the time - these things suggest a pretty significant trauma response," says Best. Other red flags: Parents who are hypervigilant and overprotective, who have intrusive flashbacks or nightmares about their time in the NICU, or who avoid situations that might trigger memories (like doctor's appointments or driving past the hospital).

Do research for them. Even if your BFF normally tells you everything, she may not be comfortable sharing the details of her NICU experience. "Parents of preemies have a hard time using their friends and family as resources because they don't particularly want to talk about the possibility that their baby might die - it's too scary," says Diane Holditch-Davis, PhD, RN, the Marcus Hobbs Distinguished Professor of Nursing at Duke University School of Nursing. "Sometimes talking to someone who's been through a similar situation is easier." You can start by finding out whether the hospital hosts support groups or has a social worker your friend can meet with or recommending an online resource like Hand to Hold, where she can connect with other parents who have been in her shoes.

Don't forget the rest of the family. Fathers and siblings can also suffer when a baby is in the NICU, and they often don't get as much attention as mothers do. Kelley says her husband had a lot of his own emotional issues to deal with during and after their son's hospital stay, and Matyi says her older daughter took Luca's hospitalization particularly hard. Kelley also points out that it's common for couples to have marital problems when a child is sick as a result of frustration, guilt, fear, and communication problems. "It's important that we not overlook these risk factors for the entire family," she says, "and help them through this difficult time together."

# data[].attributes.attachment_link.description
Parents who have a baby in the neonatal intensive care unit (NICU) are under a lot of stress. They're not only worried about the health and well-being of their newborn, they're also navigating the physical and emotional difficulties of hospital life: lost sleep, financial worries, transportation logistics, and the balance between work and other family responsibilities.

# data[].attributes.attachment_link.title
The Guide for Giving to your Hospital’s NICU

# data[].attributes.attachment_link.description
September is Neonatal Intensive Care Awareness Month . 10-15% of all infants will spend time in the NICU this year and yet a disparity still exists in support programs available for families of NICU…

# data[].attributes.headline
When asked about "what a typical NICU stay was like?" here is a response from a NICU parent:

# data[].attributes.subject
When asked about "what a typical NICU stay was like?" here is a response from a NICU parent:

# data[].attributes.body
"There was no average stay at the NICU. Sometimes you might not be let in because a baby might have passed away. The many cords and equipment could be overwhelming. There was always a sense of dread when I went because the NICU we were at had a slogan that “A preemie cannot be trusted” because anything could happen at any given time."

"Oddly enough, I have been a NICU mom twice. The first time I was very supported. When we couldn't be there, the nurses called, and when I had been there all day, they were willing to tell my husband everything he had missed. When we went to the step-down nursery, they made an effort to make my baby as normal as possible. With my second child, it was not as supportive of an environment. I was treated better than the first hospital, but my second child was not. This hospital was larger than the other, and it wasn't considered as big of a deal compared to your stay. “

# data[].attributes.headline
When asked about their PTSD symptoms, here is a response from a NICU parent:

# data[].attributes.subject
When asked about their PTSD symptoms, here is a response from a NICU parent:

# data[].attributes.body
"The idea of going to the hospital was very triggering. Just seeing a baby or hospital on TV, even if it was supposed to be a happy story, it would make me cry."

# data[].attributes.attachment_link.readable_text
Asha P. Shetty, M.Phil, PhD, 1 Kurvatteppa Halemani, M.Phil, PhD, 2 Alwin Issac, MSc, M.Phil, 1 Latha Thimmappa, MSc, PhD, 3 Sanjay Dhiraaj, MD, 4 Radha K, M.Phil, PhD, 5 Prabhaker Mishra, PhD, 6 and Vijai Datta Upadhyaya, MS, MCh 7

Abstract

Background

Neonatal intensive care unit (NICU) admission causes significant distress that can hinder the successful transition into parenthood, child-parent relations, and child development.

Purpose

This systematic review and meta-analysis aimed to understand parental psychological phenomena. Here we assessed the emotional response of parents of newborns during NICU admission.

Methods

Two authors independently searched the PubMed, Cumulative Index to Nursing and Allied Health Literature, Embase, Clinical Key, and Google Scholar databases for studies published between January 01, 2004, and December 31, 2021. The review followed Cochrane collaboration guidelines and the PRISMA (Preferred Reporting Items for Systematic Review and Meta-Analysis) statement. The quality of the included studies was assessed using the modified Newcastle-Ottawa Scale. Stata software (version 16) was used to compute the results.

Results

This review comprised 6,822 parents (5,083 mothers, 1,788 fathers; age range, 18-37 years) of NICU patients. The gestational ages and neonatal weights were 25.5-42 weeks and 750-2,920 g, respectively. The pooled prevalence of anxiety was higher among mothers (effect size [ES], 0.51; 95% confidence interval [CI], 0.41-0.61; and heterogeneity [ I ²]=97.1%; P<0.001) than among fathers (ES, 0.26; 95% CI, 0.11-0.42; I ²=96.6%; P<0.001). Further, the pooled prevalence of depression was higher among mothers (ES, 0.31; 95% CI, 0.24-0.38; I ²=91.5%; P<0.001) than among fathers (ES, 0.12; 95% CI, 0.03-0.22; I ²=85.6%; P<0.001). Similarly, the pooled prevalence of stress was higher among mothers (ES, 0.41; 95% CI, 0.31-0.51; I ²= 93.9%; P<0.001) than among fathers (ES, 0.22; 95% CI, 0.09-0.34; I ²=85.2%; P<0.001).

Conclusion

NICU admission is more stressful for mothers than fathers and can affect mental health and quality of life. Mothers reported a higher pooled prevalence of stress, anxiety, and depression than fathers, possibly attributable to their feelings about birthing a sick child.

Keywords: Anxiety, Depression, Stress, Parents, Newborn, Neonatal intensive care unit

Introduction

The diagnosis of an illness in a child causes significant distress to parents. The grief is further aggravated when an infant is admitted to a neonatal intensive care unit (NICU). The NICU provides specialized and integrated care to infant who require close supervision and life support equipment to ensure normal body function. Parents fear the diagnosis and prognosis of illness, the associated medical risks, being separated from their child, the unfamiliar hospital environment, and hindrances accessing information and communicating with healthcare professionals. Although resilience varies among parents, distress can negatively impact the successful transition into parenthood, child- parent relationship, and child development [ 1, 2].

Earlier studies reported mental health problems among parents of NICU infants, while recent studies reported the prevalence of anxiety and posttraumatic stress among parents of NICU babies [ 1, 2]. Healthcare centers tend to ignore the mental health of primary caregivers of hospitalized patients. However, sick newborns require immediate intervention to reduce complications. Most infants admitted to the NICU require long-term care. Therefore, parental involvement and effective communication during NICU admission may increase their satisfaction and lead to continued care after discharge.

To the best of our knowledge, this is the first systematic review and meta-analysis of recent studies published worldwide. In contrast to previous studies, this review focused on mental health problems among parents of neonates admitted to the NICU. However, understanding parental reactions to hospitalization is essential to healthcare providers offering appropriate interventions. Furthermore, we recognized the importance of separately examining anxiety, depression, and stress levels in mothers and fathers. This systematic review and meta- analysis aimed to understand the psychological phenomena experienced by parents of newborns during NICU admission.

Methods

1. Protocol and registration

This systematic review and meta-analysis adhered to the Cochrane Collaboration guidelines the PRISMA (preferred reporting items for systematic review and meta-analyses) statement [ 3, 4]. The review protocol was prospectively registered with PROSPERO (CRD42022301340).

2. Search strategy and study selection

The search strategy was developed using a combination of MeSH (medical subject heading) terms and keywords (mother OR father OR parents OR maternal OR NICU mother OR NICU father OR lactation mother OR newborn mother OR NICU parents OR preterm mother) AND (anxiety OR fear OR nervousness OR depression OR hopelessness OR sleep problem OR afraid OR sttabress OR uneasiness) AND (NICU unit OR hospitalization OR NICU OR neonatal unit). The first 2 authors independently searched the PubMed, Cumulative Index to Nursing and Allied Health Literature, Embase, Clinical Key, and Google Scholar databases for studies published between January 01, 2004, and December 31, 2021. The reference lists of all relevant studies that fulfilled the inclusion criteria as well as related systematic reviews, meta-analyses, and review articles were manually searched. Duplicate records were excluded by title and abstract screening. The remaining original full-text articles were screened against the inclusion criteria.

Articles that fulfilled the following criteria were included in the review: observational studies whose participants were parents of children undergoing NICU treatment; studies that adopted standardized measurement tools; and studies that reported cutoff scores for anxiety, depression and stress among NICU parents. Studies that evaluated the efficacy of various interventions for stress, anxiety, and depression among parents of NICU patients were excluded. Any disagreements between the first 2 authors (AS and KH) regarding the data extracted from the articles were referred to the third author (AI), and dissimilarities were resolved in discussion with the third reviewer. The data extraction form included the first author's name, year of study, country in which the study was conducted, sample size, parental age and educational level, infant's gestational age and birth weight, instruments used during data collection with cutoff scores, and study outcomes.

3. Search outcome

The search identified 6,518 studies from online databases and 6 from printed materials. A total of 1,541 duplicate records were removed before the first screening. Further, 4,812 were rejected for not meeting the inclusion criteria. The full-text review eliminated 131 articles. The reasons for exclusion included a lack of sample size, time of data collection (when the neonate was admitted to/discharged from the NICU), participant characteristics, measurement tools, cutoff scores, and study outcomes. Finally, 41 articles were included in this meta-analysis. A summary of the study selection process is shown in Fig. 1 .

4. Quality assessment of included studies

The quality of the includefigd studies was assessed using the modified Newcastle-Ottawa Scale [ 5]. Each included study was appraised for selection, comparability, and outcomes. The scores on the assessment tool were 0-5. Studies that achieved a score of ≥3 were considered to have a low risk of bias. The appraisals of the included studies are presented in Table 1 .

Table 1.

Study

Country

Representativeness of samples >70% response (1)

Sample size >200 (2)

Response rate >80% (3)

Validated tool with cutoff (4)

Detail statistical information, not required further calculations (5)

Total Scores

Study quality

Carter et al. [ 44] (2007)

NZ

*

*

*

*

*

5/5

Low risk

Holditch-Davis et al. [ 23] (2009)

USA

*

*

*

*

*

5/5

Low risk

Das et al. [ 18] (2021)

USA

-

-

*

*

*

3/5

Low risk

Greene et al. [ 40] (2015)

USA

-

-

*

*

*

3/5

Low risk

Naeem et al. et al. [ 42] (2019)

Iran

*

-

*

*

-

3/5

Low risk

5. Parental anxiety, depression, and stress

Parents of NICU patients often experience mental distress due to being away from their newborns, financial obligations, and family responsibilities. Anxiety, depression, and stress were the primary outcomes of the included studies. The authors of the primary studies employed various scales to evaluate parental anxiety, including the State-Trait Anxiety Inventory, Hospital Anxiety and Depression Scale, Beck's Anxiety Inventory, Hamilton Anxiety Rating, and Self-Rating Anxiety Scale.

Similarly, depression and stress were assessed using the Edinburgh Postnatal Depression Scale; Beck's Depression Inventory; Center for Epidemiologic Study Depression, Anxiety and Stress Scale; Parental Stress Scale; Posttraumatic Stress Disorder Questionnaires; Stanford Acute Stress Reaction Questionnaires; and Stress Disorder Checklist for the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, respectively.

6. Statistical analysis

The first 2 authors (AS and KH) manually calculated the pooled prevalence across studies using Microsoft Excel. We then computed the pooled estimated prevalence using a random-effects model with 95% confidence interval (CI). Categorical or dichotomous variables are reported as percentages with values of P<0.05 considered significant. Study heterogeneity was evaluated using I ² values: high, >75; medium, 50-75; and low, <50.3) Furthermore, a subgroup analysis was performed across the included studies. All analyses were performed using Poisson distribution under the Metaprop function of Stata 16 (Stata Corp LP, College Station, TX, USA).

Results

1. Study characteristics

Pooled data from the included studies were organized for a systematic review and meta-analysis. A total of 39 studies met our inclusion criteria. Among the 39 included studies, 17 adopted a cross-sectional design and 22 used a prospective or longitudinal cohort design ( Table 2 ) [ 6- 43].

Table 2.

Study

Country

Study design

Sample size

Characteristics parents

Characteristics of newborn

Measurement tool

Outcome of individual studies

Participants

Mean age in years range b/w

Mean education above HS

Mean GA range b/w (wk)

Mean weight range b/w (kg)

Name of scale

Cutoff score

Point of data collection

M-242

F-33.1

F-205

Mother

PPQ

>6

Lefkowitz et al. [ 25] (2010)

USA

Cohort

128

Parents

M-29

M-21

<30

*

ASD

>1 symptom

<7 days

Parents were reported depression and anxiety during hospitalization of their newborn infants.

M-87

F-33

F-9

F-41

PSS (NICU)

>3

HADS

>8

M-242

F-33.1

F-*

F-205

Garfield et al. [ 11] (2015)

USA

CS

113

Mother

24.7

49

<37

1.07

STAI

*

<4 Weeks

Low income & poor family support demonstrated higher psychological problems in NICU mother.

PSS

>6

M-113

F-34.7

F-101

M-62

F-42

Salah et al. [ 14] (2018)

Palestine

CS

195

Mother

28.2

90

*

2.76

BDI

>10

Social factors increase the psychological distress in NICU mother.

HAM-A

>17

Vinall et al. [ 32] (2018)

Canada

Cohort

36

Mother

31

*

<37

*

PCL

>33

Before/C

Traumatic procedure in neonatal unit increased the maternal stress among NICU mother.

PSS (NICU)

*

BDI

>10

Ganguly et al. [ 16] (2020)

India

CS

100

Parents

F-27

36

*

1.5

PSS (NICU)

*

After 24 hr of admission

Stress was not significance between mother and father but length of hospitalization significances to stress among NICU parents.

M-30

Ganguly et al. [ 16] (2020)

India

CS

100

Parents

F-27

36

*

1.5

PSS (NICU)

*

After 24 hr of admission

Stress was not significance between mother and father but length of hospitalization significances to stress among NICU parents.

M-30

M-267

PSS

>3

F-33

M-635

F-33

F-231

F-466

Cajiao-Nieto et al. [ 38] (2021)

Spain

Cohort

51

Father

20-45

39

<37

*

STAI

*

3rd day

Father repor ted anxiet y towards parenthood and NICU unit during hospitalization.

PHQ

>9

M-230

F-35.1

F-149

F-201

BDI

>10

Cohort

CES-D

>16.6

>19

Rogers et al. [ 41] (2013)

USA

Long

73

Mother

27.2

39

25.5

*

STAI

>40

At time of D/C

Factors related to family, marital status, parental role and newborn characteristic increased the psychological problems among NICU mothers. Therefore, planned intervention may reduce these problems.

Cohort

*

*

Naeem et al. et al. [ 42] (2019)

Iran

Cohort

80

Parents

*

M-47

34-36

*

PPQ

>19

3-5 Days after birth

GA was major reason for psychological symptoms NICU parents. Onset psychological symptom earlier in mothers than fathers. fathers indicated delayed onset of PTSD symptoms.

F-33

2. Participant characteristics

The review studies involved 6,822 participants (age range, 18-37 years), of whom 5,083 were mothers and 1,788 were fathers. The gestational age and neonatal weight ranges were 25.5-42 weeks and 750-2,920 g, respectively. Among the included studies, most participants were mothers, while one study included only fathers ( Table 2 ) [ 39].

Among the included studies, 22 primary studies reported anxiety in the mother, 3 studies reported both fathers and mothers as participants, and one study reported anxiety in the father [ 29, 38]. The pooled prevalence of anxiety was higher among mothers (effect size [ES], 95% CI, and heterogeneity [ I ²] (ES, 0.51; 95% CI, 0.41-0.61; I ²=97.1%; P<0.001) [ 7, 9- 11, 14, 15, 18- 20, 24, 28- 31, 33- 35, 40, 41, 44] than fathers (ES, 0.26; 95% CI, 0.11-0.42; I ²=96.6%; P<0.001) of NICU babies [ 29, 30, 38, 44]. An overall subgroup analysis revealed that approximately 47% of parents were anxious about NICU admissions (ES, 0.47; 95% CI, 0.38-0.56; I ²=97.1%; P<0.001) ( Fig. 2 ).

The highest and lowest prevalence of anxiety in the included studies were reported among mothers of newborns admitted to the NICU at 13% and 93% respectively [ 22, 31]. Similarly, the highest and lowest prevalence of anxiety among fathers of newborns admitted to the NICU were 0.09% and 46%, respectively ( Fig. 2 ) [ 29, 30].

3. Depression

Fathers typically experienced fewer depressive symptoms (ES, 0.12; 95% CI, 0.03-0.22; I ²=85.6%; P<0.00) than mothers (ES, 0.31; 95% CI, 0.24-0.38; I ²=91.5%; P<0.001) whose newborns were in the NICU [ 6, 8, 14, 17- 19, 35, 37, 39- 41, 43]. An overall subgroup analysis revealed that 28% of parents were depressed about NICU admissions (ES, 0.28; 95% CI, 0.21-0.35; I ²=94.6%; P<0.001) ( Fig. 3 ).

The highest and lowest rates of depression among mothers in the included studies were 52% and 18%, respectively [ 8, 43]. Similarly, the highest and lowest rates of depression among fathers in the included studies were 18% and 0.08%, respectively ( Fig. 3 ) [ 39, 43].

4. Stress

Mothers of newborns admitted to the NICU are more likely to experience stress (ES, 0.41; 95% CI, 0.31-0.51; I ²= 93.9%; P<0.001) than fathers (ES, 0.22; 95% CI, 0.09-0.34; I ²=85.2%; P<0.001 [ 8, 12, 13, 16, 17, 21- 28, 32, 34, 36, 42]. Overall, these findings demonstrate that parents experienced stress during the hospitalization of their newborns in the NICU (ES, 0.37; 95% CI, 0.27-0.47; I ²=94.1%; P<0.001) ( Fig. 4 ).

Among the included studies, the highest and lowest rates of stress among mothers were 76% and 23%, respectively [ 12, 32]. Similarly, the highest and lowest rates of stress among fathers were 0.06% and 35%, respectively ( Fig. 4 ) [ 21, 45].

5. Measurement tools with cutoff scores

Among the 22 studies that assessed the prevalence of anxiety among parents of newborns admitted to the NICU, 13 used the State-Trait Anxiety Inventory scale (ES, 0.53; 95% CI, 0.39-0.60; I ²=95.3%; P<0.001) [ 9, 11, 15, 20, 24, 31, 33, 34, 38, 40, 41]. Three studies used the Hospital Anxiety and Depression Scale (ES, 0.45; 95% CI, 0.11-0.80; I ²=98.6%; P<0.001) [ 28- 30, 44]. Two studies used Beck's Anxiety Inventory scale (ES, 0.60; 95% CI, 0.04-1.25; I ²=98.9%; P<0.001) [ 10, 19]. Two studies used the Hamilton Anxiety Rating scale (ES, 0.42; 95% CI, 0.26-0.58; I ²=90.7%; P<0.001 [ 14, 35]. One study used the Self- Rating Anxiety Scale ( Fig. 5 ) [ 7].

Among the 11 studies that assessed the prevalence of depression among parents of newborns in the NICU, 4 used the Edinburgh Postnatal Depression Scale (ES, 0.35; 95% CI, 0.18-0.52; I ²=93.2%; P<0.001) [ 6, 8, 37, 39], 3 used the Beck's Depression Inventory scale (ES, 0.35; 95% CI, 0.18-0.52; I ²=93.8%; P<0.001) [ 14, 19, 35], 2 used the Centre for Epidemiologic Study Depression Scale (ES, 0.40; 95% CI, 0.28-0.52; I ²=72.6%; P<0.001) [ 17, 40], and 2 used the Depression, Anxiety and Strs Scale (ES, 0.19; 95% CI, 0.14- 0.25; I ²=0.03%; P<0.001 ( Fig. 6 ) [ 18, 43].

Among the 18 studies that assessed the prevalence of stress among parents of newborns in the NICU, 6 used the Parental Stress Scale (ES, 0.57; 95% CI, 0.46-0.69; I ²=92.2%; P<0.001) [ 8, 12, 13, 16, 17, 34], 6 used the Perinatal Posttraumatic Stress Disorder Questionnaires (ES, 0.37; 95% CI, 0.31-0.42; I ²=46.1%; P<0.001) [ 22- 24, 28, 36, 42], 3 used the Stanford Acute Strs Reaction Questionnaires (ES, 0.32; 95% CI, 0.25-0.39; P<0.001) [ 24, 30, 31], and 2 used the Posttraumatic Stress Disorder Checklist for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (ES, 0.19; 95% CI, -0.09 to 0.48; I ²=95.7%; P<0.001) [ 25, 32] ( Fig. 7 ).

The pooled prevalence of the participants was calculated as 95% CI. The participants were divided into 2 age groups: <30 years (n=2,941) (ES, 0.51; 95% CI, 0.50 to -0.52) and >30 years (n=3,364) (ES, 0.48; 95% CI, 0.47-0.49). Similarly, the majority of participants were mothers (n=5,102) (ES, 0.73; 95% CI, 0.72-0.74) than fathers of newborns (n=1,803) (ES, 0.26; 95% CI, 0.25-0.27). Further, most of the babies were born after 30 weeks' gestation (n=5,358) (ES, 0.83; 95% CI, 0.82-0.84) and weighed more than 1.5 kg (n=4,633) (ES, 0.77; 95% CI, 0.76-0.78). The existing original studies adopted a cohort (n=4,542) (ES, 0.6; 95% CI, 0.64-0.66) and cross-sectional research design (n=2,363) (ES, 0.34; 95% CI, 0.33-0.35). Twenty-two studies were conducted in South and North America (n=2,644) (ES, 0.38; 95% CI, 0.37-0.39), 11 in Asia (n=1,635) (ES, 0.23; 95% CI, 0.22-0.24), 4 in Europe (n=1,314) (ES, 0.19; 95% CI, 0.18-0.20), and 4 in Australia (n=1,312) (ES, 0.19; 95% CI, 018-0.20). The pooled prevalence of anxiety, depression, stress, and measurement tools is summarized in Table 3 .

Table 3.

Variable

No. of studies

Samples (n)

Effect size (95% CI)

I ² in percentages

Discussion

This is the first systematic review and meta-analysis to report the pooled prevalence of anxiety, depression, and stress among parents of neonates in the NICU. Our findings showed that 49% of mothers and 23% of fathers felt anxious when their newborns were admitted to the NICU. Previous studies found similar results: 40% of mothers and 20% of fathers experienced anxiety symptoms during their newborns' NICU hospitalization.43,46) However, proper counseling and parental involvement during hospitalization improved parental satisfaction [ 45].

Depression is another major issue among parents of NICU patients. Our meta-analysis revealed that 31% of mothers and 12% of fathers experienced depressive symptoms. Although postpartum depression is common among new mothers, parents reported reduced depression symptoms (from 33.3% to 11.7%) by the fourth week of the NICU admission [ 47].

Similarly, many NICU parents often report high levels of stress from being physically separated from their newborn and the financial burden compared to parents of healthy babies. Our meta-analysis revealed that 41% of mothers and 21% of fathers experienced psychological stress. The NICU intervention modality and parent- centered care significantly reduced parental stress [ 48]. Newborns are admitted to the NICU for various reasons, including premature birth, low birth weight, infection, and congenital anomalies [ 49]. Faced with medical challenges, parents struggle to embrace parenthood [ 50]. This could be attributed to the mother's feelings about birthing a sick child and being more concerned about their child's future growth and development [ 51]. In addition to being away from family, hospitalization significantly increases the clinical symptoms of stress, anxiety, and depression among the parents of neonates in the NICU [ 10, 12, 15, 16, 43].

However, there was no significant correlation between neonatal sex and the psychological symptoms experienced by the parents of neonates admitted to the NICU [ 16]. Social support, family income, and parental education level were significantly negatively correlated with anxiety and depression among mothers of neonates in the NICU [ 19].

A similar systematic review and meta-analysis evaluated parent-centered communication regarding parental satisfaction during newborn NICU admission. They concluded that good communication and parental support boosted parental satisfaction. Furthermore, our study results urge healthcare workers to provide timely and effective parent-centered counseling for parents of neonates in the NICU. However, identifying the negative factors that reduce the psychological problems experienced by parents of NICU patients remains challenging for healthcare workers. Family-centered instructional interventions can reduce distress symptoms among mothers and fathers of preterm infants to a similar magnitude. Timely counseling of parents may help them better adjust to the hospital environment and enhance their mental wellbeing [ 39].

The main strength of our review is that it assessed the pooled prevalence of stress, anxiety, and depression and included a subgroup analysis of the pooled prevalence of stress, anxiety, and depression in NICU mothers and fathers.

Our review has some limitations. The majority of neonates were discharged before 1 month of age. Therefore, the prevalence of psychological symptoms among parents was examined between only the first and fourth weeks of hospitalization. Second, most of the studies were conducted in high-income countries. Therefore, we could not perform a subgroup analysis of the variations in the prevalence of stress, anxiety, and depression between low- and high- income countries.

In conclusion, NICU admission can affect parents' psychological health, which could have a detrimental effect on the parent-child interaction. Parents of neonates in the NICU require counseling, empathy about the neonate's condition, and encouragement to visit their child in the NICU. More qualitative studies with longitudinal follow-up are needed to address this issue.

Key message

Question: What emotions do parents experience when their newborns are admitted to the neonatal intensive care unit (NICU)?

Finding: Mothers experienced more anxiety (51%), depression (31%), and stress (41%) symptoms than fathers (26%, 12%, and 22%, respectively).

Meaning: Parents often experience anxiety, stress, and depression following NICU admission. Healthcare workers are responsible for providing regular parental counseling.

Footnotes

Conflicts of interest

No potential conflict of interest relevant to this article was reported.

Funding

This study received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Author contribution

Conceptualization: KH, APS; Data curation:AI, LT; Formal analysis: PM; Methodology: KH, APS, LT; Project administration: VDU, SD; Visualization: VDU, SD, PM; Writing-original draft: APS, KH, AI; Writing-review & editing: SD, RKM, LT

References

3. Higgins JPT, Thomas J, Chandler J, Cumpston M, Li T, Page MJ, Welch VA. Cochrane Handbook for Systematic Reviews of Interventions version 6.2 [Internet] Cochrane. 2021. [cited 2022 Jan 24]. Available from: http://www.training.cochrane.org/handbook.

5. Wells GA, Shea B, O'Connell D, Robertson J, Peterson J, Welch V, et al. The Newcastle-Ottawa Scale (NOS) for assessing the quality of nonrandomized studies in meta-analyses. Ottawa (ON): Ottawa Hospital Research Institute; 2014. [ Google Scholar]

Articles from Clinical and Experimental Pediatrics are provided here courtesy of Korean Pediatric Society

# data[].attributes.attachment_link.title
Prevalence of anxiety, depression, and stress among parents of neonates admitted to neonatal intensive care unit: a systematic review and meta-analysis

# data[].attributes.attachment_link.description
Neonatal intensive care unit (NICU) admission causes significant distress that can hinder the successful transition into parenthood, child-parent relations, and child development. This systematic review and meta-analysis aimed to understand parental ...

# data[].attributes.body
Study on NICU intervention and its effects

# data[].attributes.attachment_link.readable_text
J Perinatol. Author manuscript; available in PMC 2020 Mar 12.

Published in final edited form as:

Animesh Sabnis, MD, MSHS, a Sofia Fojo, BA, b Sameera S. Nayak, MA, c Elizabeth Lopez, BA, a Derjung M. Tarn, MD, PhD, d and Lonnie Zeltzer, MD e

Abstract

Objective

To classify NICU interventions for parental distress and quantify their effectiveness.

Study Design

We systematically reviewed controlled studies published before 2017 measuring NICU parental distress, defined broad intervention categories, and used random-effects meta-analysis to quantify treatment effectiveness.

Results

Among 1643 unique records, 58 eligible trials predominantly studied mothers of preterm infants. Interventions tested in 22 randomized trials decreased parental distress ( p<0.001) and demonstrated improvement beyond 6 months ( p<0.005). In subgroup analyses, complementary/alternative medicine and family-centered instruction interventions each decreased distress symptoms ( p<0.01), with fathers and mothers improving to similar extents. Most psychotherapy studies decreased distress individually but did not qualify for meta-analysis as a group.

Conclusion

NICU interventions modestly reduced parental distress. We identified family-centered instruction as a target for implementation and complementary/alternative medicine as a target for further study. Investigators must develop psychosocial interventions that serve NICU parents at large, including fathers and parents of full-term infants.

INTRODUCTION

The hospitalization of one's newborn in a neonatal intensive care unit (NICU) represents a potentially traumatic event for parents.1, 2 Individual parents exhibit profoundly heterogeneous psychological responses to the NICU hospitalization of their newborn infant as determined by multiple known and unknown infant, parent, and social factors.3

In the NICU environment, parents may feel their parenting role diminished as a result of professionals and policies governing interactions between parents and their infants.4 Parents may perceive the threat of their child's disability or death when they see their newborn attached to medical devices and experiencing suffering or physiologic instability.5 As a consequence of these experiences, NICU parents can suffer from aspects of stress- and trauma-related distress such as anxiety, stress, or post-traumatic stress.6, 7 Prolonged postnatal distress harms parents' mental health, disrupts the parent-infant relationship, and impairs children's functioning and social-emotional development in the future.8-10

The general population faces a tangible risk of NICU-related parental distress. In the United States, about one in ten newborns receives care in a NICU.11 Many NICU parents experience some postnatal symptoms of post-traumatic stress.12 A meta-analysis of mothers of high-risk newborns reports that 18.5% meet diagnostic criteria for post-traumatic stress disorder (PTSD) after birth, compared with 4% of post-partum mothers in the community.13 The prevalence of postnatal distress among NICU fathers, as reported in single-site studies, ranges from 8 - 47%, compared to a baseline postnatal paternal rate of 6 - 8.7%.14-18

Even though experts and families recognize the burden of NICU-related distress and agree on the need for psychosocial support, standard practices for screening or supporting NICU parents are not in place universally.12, 19 Furthermore, it remains challenging for clinicians and investigators to choose the most promising approaches from among the eclectic collection of treatments that have been studied.

No prior review has comprehensively synthesized studies of interventions to reduce distress in NICU parents at large. Previous systematic reviews selected narrow scopes that limited their applicability across varied patient populations, treatment modalities, and psychological outcomes.20-24 First, few reviews examined the effect of interventions on fathers' distress symptoms, even though NICU fathers experience birth-related psychological distress.25 Second, prior reviews predominantly assessed distress in parents of premature or very low birth weight infants, even though parents of critically ill full-term newborns are similarly susceptible to psychological distress.26 Third, no review has quantitatively synthesized the effect of diverse NICU interventions on parental PTSD using meta-analysis.

We undertook this systematic review and meta-analysis of NICU interventions for stress- and trauma-related parental distress to achieve the following aims: (1) to characterize the populations, interventions and outcomes reported in controlled studies; (2) to classify interventions targeting NICU-parental distress; (3) to estimate the overall effectiveness of interventions during NICU hospitalization and long-term; and (4) to compare treatment effectiveness among intervention classes, between mothers and fathers, and between short- and long-term outcomes. Through this analysis, we sought to identify the most promising treatment approaches for implementation by health systems and further study by investigators.

METHODS

We adhered to a predetermined protocol that specified study search strategy, eligibility criteria, methods of analysis, outcome variables, and effect direction.27 We describe the full methods in the supplemental materials.

Study Search & Selection

We searched PubMed, PsycINFO, CINAHL, and SCOPUS for studies published before 2017 using terms for the following concepts: hospitalized infants, parents, stress, anxiety, PTSD, and intervention. (Complete search terms are listed in supplemental materials.)

Three reviewers eliminated duplicate records and reviewed full-text reports to identify studies eligible for inclusion.

Study Eligibility Criteria

In the systematic review, we included English-language experimental studies (1) enrolling parents of infants admitted to a NICU, (2) testing interventions during or pertaining to the hospitalization, (3) reporting post-intervention parental anxiety, stress, or post-traumatic stress, and (4) comparing outcomes between NICU parents exposed to an intervention versus NICU parents exposed to a placebo treatment or usual care.

In order to synthesize study effects homogeneously, we excluded from review observational studies and studies with an exclusively pre-post design lacking a distinct control group. To decrease heterogeneity, we excluded from the meta-analysis studies that failed to report outcomes as unadjusted scores.

Data Collection

From each report included in the systematic review, we extracted information pertaining to the study, subjects, intervention, and outcomes. We separately collected and analyzed data for mothers and fathers when they were reported distinctly within a single study. We classified interventions into broad categories. Local experts in serious pediatric illness and parental adjustment corroborated the face validity of our intervention typology.

To account for the highly variable trajectories of distress symptoms individuals experience when faced with potentially traumatic events, we chose two time points for quantitative synthesis, (1) the latest in-hospital measurement, and (2) the most distal measurement reported.2 Despite wide variability in individual distress patterns, on average, parental distress symptoms are highest during the hospitalization and decline over time.28 To assess long-term treatment effects, we collected distress measurements most distal in time to intervention as our primary outcome. Therefore, when analyzing the primary outcome, for trials publishing serial reports from a single sample, we only included the report presenting the furthest time point; and for studies reporting outcomes at multiple time points, we only synthesized data from the furthest time point. To assess treatment effects during NICU hospitalization, a secondary outcome was the latest in-hospital distress measurement prior to NICU discharge, which we collected separately for studies reporting results at multiple time points.

Summary Measures

From studies eligible for meta-analysis, we collected anxiety and stress- or trauma-related distress scores. We included anxiety symptoms because, prior to the fifth and current edition of the Diagnostic and Statistical Manual of Mental Disorders, stress- and trauma-related disorders were sub-classified as anxiety disorders.29

The primary measure of treatment effect for meta-analysis was the standardized mean difference (SMD) in distress symptoms between the intervention and control groups ( i.e., control subtracted from intervention). We classified negative SMD values as favoring intervention. We reversed signs when necessary to yield consistent inter-group SMDs.

We aggregated measures of stress, trauma, and anxiety for meta-analysis. To harmonize numerous psychometric instruments for distress symptoms, we calculated the Z-score ([study mean - group mean] ÷ group standard deviation) and the standardized standard deviation (study standard deviation ÷ group standard deviation) for each reported instrument. For studies reporting the results of multiple instruments from the same subjects, we calculated weighted averages of Z-scores to provide composite measurements of distress for each study group.

Meta-analysis

We predicted a lack of common treatment effect among studies testing heterogeneous interventions. Therefore, to quantify the overall effectiveness of interventions, we employed the random effects meta-analysis method of DerSimonian and Laird.30 We assessed heterogeneity among study effect estimates using both Higgins' I ² and Cochran's Q statistics. We used funnel plots and Egger's test to detect reporting bias pertaining to the relationship between sample size and effect size. We expected randomized studies to have lower risk of bias than non-randomized experimental studies, therefore they were analyzed separately.

We carried out meta-analysis procedures in Stata/SE version 14 (Stata Corp., College Station, TX) using the following programs: metan to conduct random-effects meta-analysis, metafunnel to generate funnel plots, and metabias to carry out Egger's test.31

Additional Analyses

We conducted pre-determined subgroup analyses of randomized studies eligible for meta-analysis to assess the comparative effectiveness of interventions (1) among intervention classes, (2) between mothers and fathers, and (3) on short-term and long-term outcomes. We conducted one post-hoc sensitivity analysis to determine the overall and subgroup effect sizes after excluding studies conducted in Iran that, as a group, were outliers favoring intervention compared to studies conducted elsewhere.

RESULTS

Study Selection

A study selection flow diagram ( Figure 1 ) illustrates the process we undertook to select 58 controlled studies of interventions for NICU parental distress for systematic review (references listed in supplemental materials). Among those, we quantitatively synthesized 23 randomized, and 10 non-randomized, controlled studies.

Study Characteristics

The 58 studies we reviewed enrolled 5,887 parent subjects ( Table 1 ). The median year of publication for this body of literature was 2013. Twenty studies were conducted in North America, sixteen in Europe, nine in Iran, seven in Asia, three in Australia, and three in Brazil.

Table 1.

First Author

Year

Country

Subjects Enrolled

Parents(†)

Randomized

Intervention

Distress Measures

Instruments

Significant Difference(ǂ)

Changing NICU medical care

Complementary/alternative medicine

Family-centered Instruction

Psychotherapy

Studies predominantly enrolled mothers and parents of preterm infants. Thirty-six studies tested interventions exclusively on mothers while three studies enrolled only fathers and 19 studies enrolled both mothers and fathers. Six studies permitted enrollment of full-term infants.

Intervention Classification

We classified 46 distinct interventions into four broad categories: (1) Changing NICU medical care; (2) Complementary/alternative medicine; (3) Family-centered instruction; and (4) Psychotherapy.

We classified as 'Changing NICU medical care' eleven studies that altered parents' exposure to the organization or delivery of medical treatment performed by nurses or physicians as compared to contemporaneous local standards of care. Interventions in this class primarily targeted other outcomes alongside distress. Interventions that changed infant rooming or visiting conditions aimed to enhance parent-infant bonding. Parent-to-parent support groups provided families with social resources during a uniquely challenging experience.32 Interventions that integrated parents directly in their infant's medical care empowered parents to fulfill their parental role.33 Parent-professional communication interventions aimed to improve comprehension or shared medical decision making.34

We drew on classifications by the National Center for Complementary and Integrative Health to determine eligibility in the category 'Complementary/alternative medicine'.35 We included twelve studies that introduced mind-body modalities originating outside the allopathic medical tradition. Interventions in this class typically were designed to decrease stress. Mind-body modalities included maternal acupuncture, journal writing, relaxation techniques, music interventions, infant massage, and parent-infant skin-to-skin contact. Consistent with the recent growth of complementary/alternative medicine use among the general population, these publications were the most recent, with a median publication year of 2015.36

The most frequently studied class of intervention was formed by multi-faceted programs of 'Family-centered instruction.' These interventions in 30 studies predominantly focused on the developmental trajectory of premature infants. In their meta-analysis, Benzies et al developed a classification for the components of this intervention category comprised by (1) parent psychosocial support; (2) parent education in the form of either information alone, guided infant observation, or active parent involvement with professional feedback; and (3) infant developmental support.21

Finally, in five 'Psychotherapy' studies, licensed mental health professionals administered psychological therapy, frequently an application of cognitive-behavioral therapy explicitly designed to remedy distress symptoms, face-to-face with parents during their child's NICU hospitalization.

Distress Instruments

Stress was the most frequently assessed aspect of distress, measured in 25 reports using the Parental Stressor Scale:NICU and in 10 reports using the Parenting Stress Index. Seventeen studies measured anxiety using the State-Trait Anxiety Inventory. Post-traumatic stress symptoms were assessed using the Perinatal Post-traumatic Stress Disorder Questionnaire in four studies and the Davidson Trauma Scale in three studies. All reported instruments for stress, anxiety, and post-traumatic stress are listed in Table 1 .

Randomized Studies Meta-analysis

When assessed for our primary outcome, the effect size at the latest-reported time point, NICU-based interventions modestly decreased stress- or trauma-related distress in NICU parents at large. The cumulative effect was a one-third standard deviation reduction in distress symptoms across multiple psychometric measures ( N=22; SMD: −0.34, 95% CI (−0.51, −0.17); p<0.001) with a high level of heterogeneity among study effect estimates (I ² = 72.7%, Cochran's Q p<0.001) ( Figure 2 ). The bulk of analyzed randomized studies did not exhibit evidence of reporting bias, with a negative Egger's test ( p= 0.09) and study effect sizes fairly symmetrically distributed in a funnel plot ( Figure 3 ). The three outliers on the funnel plot represent two studies conducted in Iran that we excluded in a post-hoc sensitivity analysis described below.

In subgroup analyses of randomized studies, interventions categorized as 'Complementary/alternative medicine' ( N=4; SMD: −0.47 [−0.83, −0.12]; p<0.01) and 'Family-centered instruction' ( N=13; SMD: −0.37 [−0.59, −0.15]; p=0.001) reduced parental distress symptoms. 'Changing NICU medical care' interventions ( N=4; SMD: −0.08 [−0.44, 0.28]; p> 0.05) did not decrease parental distress overall. Only one randomized 'Psychotherapy' study was eligible for quantitative synthesis, thus this category could not be assessed in this analysis.

When assessed for our secondary outcome, randomized studies reporting treatment effects prior to NICU discharge did not decrease distress symptoms, neither overall ( N=9; SMD −0.08 [−0.24, 0.09]; p>0.05) nor within any intervention classification subgroup ( p>0.05). These studies did not exhibit evidence of reporting bias, with a symmetric funnel plot (not shown) and a negative Egger's test ( p=0.7).

Effects in Mothers and Fathers

Family-centered instruction interventions decreased distress symptoms in mothers and fathers by similar magnitudes (mothers' SMD: −0.5 [−0.85, −0.14], p<0.01; fathers' SMD: −0.32 [−0.64, −0.01], p<0.05). Among randomized studies, only studies in this class distinctly reported results for fathers. These studies predominantly enrolled parents of preterm infants.

Long-term Distress Reduction

The furthest time of distress measurement within studies ranged from 1 day to 9 years in the 21 studies that specified timing (median 90 days, interquartile range [10 days, 1 year]). Half of the 16 randomized studies specifying timing measured distress symptoms 6 months or later after intervention. Overall, these interventions decreased long-term parental distress symptoms (SMD: −0.22 [−0.38, −0.07]; p<0.005) with a low level of heterogeneity (I ² = 18%, Cochran's Q p=0.28).

Post-hoc Sensitivity Analysis

The two eligible randomized studies conducted in Iran produced considerably larger effect sizes favoring intervention than studies conducted elsewhere. A post-hoc sensitivity analysis excluding these studies yielded results consistent with our initial findings. The remaining interventions reduced parental distress ( N=20; SMD −0.19 [−0.29, −0.09], p<0.001), and, among them, complementary/alternative medicine and family-centered instruction interventions decreased distress ( p<0.01).

Non-Randomized Studies Meta-analysis

Assessed for our primary outcome, the effect size at the latest-reported time point, ten non-randomized studies eligible for meta-analysis reduced parental distress overall (SMD: −0.99, 95% CI [−1.56, −0.41], p=0.001) with a high level of heterogeneity (I ² = 91.4%, Cochran's Q p<0.001) ( Supplemental Figure A). A symmetric funnel plot of non-randomized studies ( Supplemental Figure B) as well as a negative Egger's test ( p=0.98) suggest the absence of evident reporting bias. 'Complementary/alternative medicine' and 'Family-centered instruction' interventions in non-randomized studies decreased distress symptoms ( p<0.05).

DISCUSSION

We believe this is the first comprehensive synthesis of the diverse body of literature on NICU-based interventions for parental distress. To produce a synthesis applicable to NICU parents at large, we analyzed controlled studies of the effect of NICU interventions on stress- or trauma-related distress, regardless of treatment modality, parent sex, or newborn gestational age. We classified a diverse array of treatments into broad categories, and we quantified their effectiveness, altogether and within classes.

In light of recommendations to provide psychosocial support to all NICU parents, this review serves clinicians and health systems by highlighting priorities for implementation. By identifying gaps in the literature, this review serves investigators by identifying opportunities for the further study of available modalities as well as the development of novel treatments.

Overall, NICU interventions produce modest reductions in parental distress symptoms in the long term, though not necessarily when measured prior to hospital discharge. This holds true comparably for mothers and fathers, and the benefits persist in studies measuring distress after 6 months. With these findings, this review encourages NICU parents to expect psychosocial support regardless of their sex or their child's gestational age.

Family-centered instruction interventions, which are multi-faceted programs that provide in-hospital parent education, reduce parental distress symptoms and represent the clearest implementation opportunity for health systems not already providing such a program. However, prior reviewers have commented on the challenges of operationalizing this class of intervention owing to the heterogeneity of treatment components, clinical sites, and families.21, 37 In addition, these programs are designed chiefly to address the developmental needs of preterm infants. Therefore, this category also presents an opportunity for investigators to develop family-centered instruction programs with the flexibility to support parents with infants at any gestational age.

Complementary/alternative medicine approaches represent a promising area for further research because, based on our small and heterogeneous sample, they decrease parental distress. This class of intervention is often relatively inexpensive to implement and enjoys growing acceptance amongst the public. Four randomized complementary/alternative medicine studies eligible for meta-analysis tested a diverse set of mind-body modalities including acupuncture, journaling, relaxation, and kangaroo care, a form of skin-to-skin parent-infant contact commonly used in the care of preterm infants.38 Mind-body modalities might move from the margins of neonatology into the mainstream, for instance, through large-scale, randomized controlled trials of practices such as journaling or meditation.

Interventions that changed NICU medical care had an overall null effect on parental distress symptoms. This finding suggests that investigators testing changes to medical treatments that impact parents should assess for unintended parental distress, as was evident in a communication intervention reported by Clarke-Pounder et al.39 Furthermore, although adult intensive care studies have demonstrated reductions in family distress symptoms following intensive communication interventions, in this study, the few neonatal studies testing communication interventions did not mirror those results.34 The risk of mortality is considerably greater in adult intensive care than in NICUs, and we can speculate that subsets of NICU parents, such as parents of newborns facing a high risk of death, may experience greater distress reductions than NICU parents at large. This review identifies an opportunity for large-scale studies to test the effect of intensive communication interventions on NICU parental distress.

We were unable to quantitatively synthesize psychotherapy studies in this meta-analysis. We note that four of the five psychotherapy studies we reviewed reported parental distress reductions. Among them, the series of randomized studies by Shaw et al demonstrated significant reductions in parental distress after trauma-focused CBT, however, they reported results as adjusted estimates, excluding them from our meta-analysis.40, 41 Future studies could apply meta-regression techniques to appropriately synthesize adjusted results in this body of literature. Current recommendations endorse professional psychotherapy for NICU parents experiencing significant stress- or trauma-related distress during their child's hospitalization.42

Limitations

This body of literature contains gaps and imbalances with respect to geography, parent sex, infant gestational age, and distress time course, that impose limitations on the generalizability of our findings.

Most studies eligible for systematic review were conducted in North America or Europe, limiting the global generalizability of these findings. We speculate that social resources and norms that vary across regional and cultural contexts will influence treatment effectiveness, a potential explanation for the considerably larger effect sizes found in studies conducted in Iran. Investigators have the opportunity to translate these findings to diverse settings globally.

Fewer than half of reviewed studies enrolled fathers, and many that did failed to report outcomes for fathers distinctly. Fathers have an important role to play in the social-emotional development of high risk infants and in the well-being of their family. Therefore, the omission of fathers from this body of literature has consequences not only for fathers but for their partners and their children, as well.43 In light of our finding that fathers respond to interventions as well as mothers do, investigators must develop and test interventions designed to address the psychosocial needs of both mothers and fathers.

Only one in ten eligible studies enrolled parents of full-term infants, thereby omitting a class of parents no less susceptible to stress- and trauma-related distress.3 While preterm infants are typically hospitalized because of problems related to their developmental immaturity, term infants in a NICU can have medical problems ranging from transient to grave. NICU patients of all gestations can face a wide range of risk for death or disability. Investigators must design interventions that treat NICU parents at large, regardless of their newborn's gestational age.

Several reviewed studies failed to specify the timing of distress observation. Investigators can demonstrate the impact of interventions over variable patterns of distress symptoms by reporting outcomes at multiple discrete timepoints both during the hospitalization and long after discharge.

Finally, our classifying an eclectic array of interventions into broad categories brought disparate treatments together, losing the specificity of interventions as they were implemented in individual studies. Aggregating diverse interventions across varied patient populations, measured by disparate instruments, allowed us to estimate an overall treatment effect for parental distress. Although our effect estimate reflects this body of literature, the heterogeneity of the underlying treatments limits the prediction of an effect size for a given intervention in the future.

Conclusions

In this systematic review and meta-analysis, we found a modest, long-term improvement in parental stress- and trauma-related distress resulting from NICU-based interventions. Based on their effectiveness at reducing distress, we identified opportunities for implementing family-centered instruction programs, and for developing complementary/alternative medicine interventions, each ideally designed to serve NICU parents at large.

By identifying omissions in this body of literature, we highlighted several opportunities for future research. Investigators have the opportunity to develop and test interventions in many regions of the world currently lacking research on NICU parental distress. Future studies ideally will assess the effectiveness of treatments across a lengthy postnatal span. Finally, we found that this field of research has predominantly limited its scope to the mothers of preterm infants, highlighting an imperative to develop and test psychosocial interventions flexible enough to serve NICU parents at large, including fathers and the parents of critically ill full-term infants.

ACKNOWLEDGEMENTS

The authors wish to thank Bethany Myers for library guidance, Sitaram Vangala for statistical guidance, Isabell Purdy for intervention-classification input, and Catherine Mogil for critical feedback. Database services provided by NIH/NCATS grant UL1TR000124. This study was supported by a UCLA Mattel Children's Discovery and Innovation Institute Seed Grant.

FUNDING SOURCE: This study was supported in part by the UCLA Mattel Children's Discovery and Innovation Institute. This study was supported exclusively by intramural funding.

Footnotes

CONFLICT OF INTEREST: The authors have no conflicts of interest and no financial relationships relevant to this article to disclose.

Supplementary information is available at JPER's website.

REFERENCES

5. Boulais J, Vente T, Daley M, Ramesh S, McGuirl J, Arzuaga B. Concern for mortality in the neonatal intensive care unit (NICU): parent and physician perspectives. J Perinatol 2018. [[ PubMed] Google Scholar]

11. United States Department of Health and Human Services / Health Resources and Services Administration / Maternal and Child Health Bureau. Child health USA 2013. Rockville, MD, USA: U.S. Department of Health and Human Services; 2013. [ Google Scholar]

24. Zhang X, Kurtz M, Lee SY, Liu H. Early intervention for preterm infants and their mothers: a systematic review. J Perinat Neonatal Nurs 2014. [[ PubMed] Google Scholar]

29. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition American Psychiatric Publishing: Arlington, VA, 2013. [ Google Scholar]

31. Palmer TM, Sterne JAC (eds). Meta-analysis in Stata: An Updated Collection from the Stata Journal. Stata Press: College Station, TX, 2016. [ Google Scholar]

37. Burke S. Systematic review of developmental care interventions in the neonatal intensive care unit since 2006. J Child Health Care 2018: 1367493517753085. [[ PubMed] Google Scholar]

38. Conde-Agudelo A, Diaz-Rossello JL. Kangaroo mother care to reduce morbidity and mortality in low birthweight infants. Cochrane Database Syst Rev 2016(8): Cd002771. [[ PubMed] PMC free article] [ Google Scholar]

# data[].attributes.attachment_link.title
Reducing Parental Trauma and Stress in Neonatal Intensive Care: Systematic Review and Meta-Analysis of Hospital Interventions

# data[].attributes.attachment_link.description
To classify NICU interventions for parental distress and quantify their effectiveness.We systematically reviewed controlled studies published before 2017 measuring NICU parental distress, defined broad intervention categories, and used random-effects ...

# data[].attributes.attachment_link.title
NICU Hospitalization: Long-Term Implications on Parenting and Child Behaviors

# data[].attributes.attachment_link.description
Parents of infants admitted to the Neonatal Intensive Care Unit (NICU) experience psychological distress, loss of the parenting role, and disruptions to parent-infant bonding. The inclusion of evidence-based practices to address these challenges in the…

# data[].attributes.body
Clinician Perspective:

# data[].attributes.attachment_link.description
10.1542/6145814224001Video AbstractPEDS-VA_2019-35676145814224001Parenting in the NICU is an intense journey. Parents struggle to build intimacy with their child amid complex emotions and medical uncertainties. They need to rapidly adapt their vision of parenthood to the realities of intensive care. The psychological impact of this journey can have important effects on their psychological health.

# data[].attributes.body
Examples of considerate support:

# data[].attributes.attachment_link.provider_name
When a friend's baby is in the NICU: 10 Things You Can Do to Help

# data[].attributes.attachment_link.readable_text
Childbirth is supposed to be a joyful time, but when a mother gives birth to a preemie she can feel scared, overwhelmed and isolated in the Neonatal Intensive Care Unit (NICU).

I know firsthand what NICU moms are going through, because I was one. My daughter, Kaydee, was born at 25 weeks. She weighed 1 lb., 6 oz. and was 12 inches long. She faced numerous uphill battles and we spent nine months in the NICU before my husband and I brought her home for the first time. That was five years ago. Today, Kaydee is a healthy and active preschooler.

It wasn't an easy journey, but I learned a lot during my time spent in the NICU at Children's Mercy. I now work in the same NICU offering my support to other parents, and here are a few things friends and family can do to offer their support too.

Reach out, but don't expect a reply

Let the new mom know you're thinking of her and her family. The support is appreciated and means so much, but just know it's impossible for her to respond to everyone.

When you do speak with the mom, don't try to relate to her and don't say "I know how you feel," because unless you had a baby with the same challenges you don't truly know how she feels. Instead, just listen. That's what she needs most during this time someone to just listen.
Tip for NICU moms: Ask a family member to return calls and texts for you. You can also keep friends and family updated through Facebook. I found it was a quick way to share information broadly and it reassured me that I didn't have to respond to everyone individually. Another tip, limit yourself on Facebook, because it's hard not to compare your life to others around you.
Say Congratulations

Tell the parents congratulations! This is supposed to be a happy time and even though it's not exactly what they had hoped for, they still had a child, which should be celebrated. It's just a different type of celebration.
Tip for NICU moms: This won't be the celebration you had envisioned, but make sure to celebrate the milestones.
Give Preemie Parents time to Grieve

Family and friends need to understand that grieving is part of the process. While parents are happy their child is alive, they're also grieving the loss of what they thought was going to be a joyful time, so they need to work through their emotions.
Tip for NICU moms: Recognize that family and friends are also mourning in their own way. My parents had a hard time, because they had to watch me and my family go through the pain and suffering, and they couldn't do anything about it.
Offer Rides to the Hospital

Something as simple as offering a ride to-and-from the hospital is an easy way to help and can make a world of difference. We lived an hour away, so friends that worked in Kansas City would give me rides to the hospital. My mom or husband would come to visit in the evening and bring me home.

Gas cards are another great gift. The miles can quickly add up when you're driving to the hospital every day.
Tip for NICU Moms: Go home at night and sleep if you can. You need to take care of yourself, so you can take care of your child to your full potential. Build relationships with the nurses so you feel comfortable leaving the hospital. I would call and check on Kaydee as soon as I got home, before I went to bed, if I woke up in the middle of the night and again in the morning before I headed back to the hospital. I tried to be as connected as possible while away.
Provide Meals

Preparing dinner is the last thing on any NICU parents' mind. Provide the family with a home-cooked meal, so they don't have to eat hospital food day after day. Also think about making individual portions that can be frozen and brought to the NICU for lunch.

Give gift certificates to area restaurants. My husband and I always appreciated gift certificates and would go out to eat on our way home from the hospital. We may not say two words to each other, but it was nice to go to dinner and not have an expectation to relive the day.

Make grab-and-go snack packs. Having healthy snacks on hand in the NICU is a must. Granola bars, trail mix and even fresh fruit is a quick way to reenergize throughout the day.
Tip for NICU Moms: If someone offers to take you out for lunch, go! You need to eat and leaving the unit for a couple hours will do you good. Also, don't forget to drink plenty of water.
Give Coins

It's not something you think about, but NICU parents need quarters for the vending machines. A church group gave us a basket full of goodies, which included five dollars in quarters and it was a great gift, because you never have change when you need it.
Tip for NICU Moms: Money can carry germs and bacteria, so it's important to wash your hands after touching dollar bills and coins to help prevent your little one from getting sick.
Give a Journal

A journal makes a great gift. Some moms find it therapeutic to write about their experience in the NICU. In addition to a journal, you can also give word puzzles, adult coloring books and magazines.
Tip for NICU Moms: Don't forget to take lots of pictures. You baby is growing bigger every day and you'll want to look back at the milestones someday.
Help with Chores and Pets

Clean the house and do laundry. My mom, her friend and my sister-in-law did this without asking me, because they knew if they'd asked I'd say "no," but it was so nice coming home to a clean house and clean clothes.

Walk the dog, buy pet food so it's one less thing they have to worry about or even offer to foster the family pets during the NICU stay.

It's always the little things that helped the most.
Tip for NICU Moms: Friends and family are going to offer to help. Let them! It gives them a way to show support and it really does let you focus on your family.
Help with Siblings

Parents are juggling a lot during their stay in the NICU, but its important siblings maintain a routine life as much as possible. Offer rides to school, practice or games. Have a playdate or a sleepover, so parents can spend time at the hospital.
Tip for NICU Moms: The hospital has a lot of great programs for siblings. Utilize Child Life for support. They can meet with the sibling and go over what they're about to experience and they can help entertain kids at the bedside. Include other children in your baby's care if they're old enough. After Kaydee came home and we finally got to the point where we'd go out places, I'd have my nieces and nephews be in charge of making sure everyone washed their hands. They took this responsibility very seriously as it was a way for them to help keep Kaydee healthy.
Don't Forget about Dads and Partners

While moms and babies are usually the main focus, don't forget about the dads and partners. They also need to take care of themselves and are dealing with the same emotions.

Many times the significant other is still going to work and they're dealing with the guilt of not being at the hospital every day. Make sure to reach out and let them know you're thinking of them.
Tip for NICU Moms: Your significant other is really the only other person that knows what you're going through, so take time for each other. While your child is important, your relationship is as equally important and you'll need each other to get through this.
Kaylee and her daughter, Kaydee, were featured on Inside Pediatrics in 2014. Watch here.

Children's Mercy is the only top-level (Level IV) NICU in the region. Learn more about the neonatology program and the resources available.

# data[].attributes.attachment_link.title
When a friend's baby is in the NICU: 10 Things You Can Do to Help

# data[].attributes.attachment_link.description
Kaylee Hurt, Parent Support Program Coordinator, ICN Patient and Family Support Services Childbirth is supposed to be a joyful time, but when a mother gives birth to a preemie she can feel scared, overwhelmed and isolated in the Neonatal Intensive Care Unit (NICU). I know firsthand what NICU moms are going through, because I was one.

# data[].attributes.attachment_link.readable_text
Aim

To compare mental health in parents of preterm/ill infants and parents of term and healthy infants before birth and 1 month after hospital discharge.

Methods

A comparative cohort design was used. In total 439 parents from six neonatal intensive care units (NICUs) and 484 parents from four maternity units (MUs) in Sweden answered a survey 1 month after discharge.

Results

Parents in neonatal units experienced significantly more psychologically traumatic births and rated their health and the health of their infants less favourably the first week after delivery than parents in MUs. In the neonatal units, both parents had better possibilities to stay together with the infant during hospital stay. There was no difference between the NICU and MU groups in postpartum depressive symptoms 1 month after discharge. Experiencing a traumatic birth was not related to an increased risk of perinatal depressive symptoms (Edinburgh Postnatal Depression Scale ≥13) for mothers in NICUs. In contrast, the risk of depression increased for mothers in MUs.

Conclusion

Family togetherness, parent-infant closeness and emotional support at NICUs may contribute to the positive outcome. Further studies are needed to assess the long-term effects of how family togetherness and closeness influence families long term.

# data[].attributes.attachment_link.title
NICU parents' mental health: A comparative study with parents of term and healthy infants.

# data[].attributes.attachment_link.description
NICU parents' mental health: A comparative study with parents of term and healthy infants.

# data[].attributes.attachment_link.title
Support for NICU Parents | Hand to Hold | Free Emotional Support

# data[].attributes.attachment_link.description
Hand to Hold® is a national nonprofit that provides personalized emotional support, educational resources and community for NICU parents.

# data[].attributes.attachment_link.title
Grieving the Loss of a Child: Coping & Moving Forward

# data[].attributes.attachment_link.description
The death of a child brings about immense grief. Parents may experience a range of emotions, including sadness, worry, and anger. For some people, these emotions may turn into complicated grief and mental health issues like depression or anxiety. Coping strategies include finding support, expressing…

# data[].attributes.body
What physicians should look for in their patient's families:

# data[].attributes.attachment_link.readable_text
Skip to main content

We can all help prevent suicide. The 988 Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals in the United States.

988

¡Los servicios de texto y chat de 988 Lifeline ya están disponibles en español!
Haga clic aquí para obtener información sobre cómo acceder a todos los servicios en español.

Conocer más

Stock photo by iStock.

The 988 Lifeline is a national network of local crisis centers that provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week in the United States. We're committed to improving crisis services and advancing suicide prevention by empowering individuals, advancing professional best practices, and building awareness.

About The Lifeline

Anyone could be struggling with suicide. Find more specific resources below.

I'm Struggling With Individuals with Neurodivergence

We understand that every struggle is different. Experience the stories of people like you, and how they overcame crisis to find hope and recovery.
read stories of hope & recovery

First, you'll hear an automated message featuring additional options while your call is routed to your local 988 Lifeline network crisis center.

We'll play you a little music while we connect you to a skilled, trained crisis worker.

A trained crisis worker at your local center will answer the phone.

This person will listen to you, understand how your problem is affecting you, provide support, and get you the help you need.

988 Lifeline Center calls are free and confidential, and we're available 24/7.

Show What Happens When You Call The Lifeline

Everyone Plays A Role In Suicide Prevention

Get in touch

Call the Lifeline

# data[].attributes.attachment_link.description
Skip to main content We can all help prevent suicide. The 988 Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals in the United States. 988 ¡Los servicios de texto y chat de 988 Lifeline ya están disponibles en español!

# data[].attributes.attachment_link.title
They join #MarchForBabies to honor their daughter. #WhyIWalk #preemie

# data[].attributes.attachment_link.description
MarchForBabies HONORS those who've experienced loss. The Hamiltons lost one of their children, Elsie, who was born just over 24 weeks. She was alive for 15 ...