NICU Parent Educational Empowerment Program
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.