Dharshi Sivakumar MD, Michelle Wrench RN, CCRN

The natural process of parent-infant attachment can be interrupted due to newborn intensive care unit (NICU) admission at birth. The attachment process comes from a developmental perspective on human life (1). Bonding with the parents or primary caregiver is fundamental to growth and development in children (2). Attachment and bonding have been used interchangeably, even though they should be defined separately in research. 

Attachment between the parent and the high-risk infant in the NICU can be facilitated through protective factors such as nurturing touch, closeness, caregiving, sensitivity to the infant’s cues, and responsiveness to the infant’s needs (3,4). However, the early separation between parent and infant and a traumatic technological NICU environment interrupt the complex attachment process (5). Interventions to support or modify these factors during the NICU stay should help establish parent-infant attachment (6). 

High-risk infants hospitalized in the NICU often receive life-saving interventions during a critical development period when their brain is susceptible to positive and negative environmental factors. This time is particularly challenging for families. Parents of hospitalized newborns are likely to experience clinically significant symptoms of stress, anxiety, and depression. These symptoms can impact the nature and quality of the early parent-infant relationship and lead to long-term consequences for the family dynamic (7-10). Perinatal parent mental health represents a key factor that impacts neuro-developmental outcomes of high-risk infants. It is necessary to optimize the well-being of NICU infants and their families by increasing awareness and screening for parents’ mental health in the NICU and building systems for support and early intervention (11). 

Over the past couple of decades, the NICU philosophy and how we care for these infants have changed. With the introduction of family-centered/integrated care, families are spending more time in the NICU and witnessing the ups and downs of their loved one’s journey—the guilt, anxiety, and sadness of losing a normal pregnancy fuel the trauma and stress in mothers. Over time, this leads to postpartum depression, anxiety during NICU stay, and post-traumatic stress disorder a few months after discharge (12). 

How can healthcare providers support these NICU families? Reviewing the literature, we could recognize a few common positive, supportive methods for the families (13,14). 

Meeting other parents in the unit during regular social and informative parent group sessions to give emotional support and gain confidence in participating in the care of their high-risk infant 

  • Providing access to well-established online groups to discuss common NICU issues with other past and present parents 
  • One-on-one support through a trained peer buddy program. Psychosocial and mental health screening and early psychological support for the vulnerable parents 
  • Bedside staff assigning simple activities to perform during parents’ daily visits. Simple tasks like holding the infant, skin-to-skin care, reading, pumping at the bedside, selecting the clothes and dressing their infants, infant massage program, and following a well-designed developmental program with different staging 
  • Creating such opportunities for parent empowerment improves confidence in providing infant care and parental knowledge about an infant’s development. These interventions are therapeutic to the parents and improve the infant’s clinical and developmental outcomes(15-19). 

The challenges in setting up parent support programs are different in each NICU 

  1. In tertiary care NICUs in children’s hospitals or academic centers, the hospital administration and patient experience will love to support these measures as part of financial incentives to their institution. Funds will be provided to support different programs, and all the trainees in the NICU will readily participate in these projects. However, implementing such a program has its challenges, such as difficulty changing the culture, staff participation due to time constraints, cooperation with subspecialty providers and supporting the families living far from the hospital and visiting less often. 
  2. In a smaller level, 2 and 3 NICUs in community hospitals, getting support from hospital administration and patient experience are crucial to developing parent support programs. The administration is unaware of these measures in these hospitals as they focus more on adult patients. The hospital administration support is necessary to receive funds that will help to support staff time and commitment. The staff are willing to support the families and have time. Most of the parents live close by and visit more often. 

No matter what the hospitalization entails for babies and families of the neonatal ICU, support from staff and other parents with similar experiences can ease the burden of trauma and optimize coping during the NICU journey. Building a sense of community and a safe place to talk about shared experiences begins early at El Camino Health NICU. This is a 20-bed level 3 NICU in a community hospital staffed by academic neonatologists in the heart of Silicon Valley. We established a few parental support programs under the comprehensive family-centered care program. 

  1. Parent Exchange Program: We have been doing this support program for over a decade and did not stop during the pandemic. Our Parent Exchange Program meets monthly via zoom on a regularly scheduled day. Our team comprises two neonatal nurses (Michelle Wrench and Tammy Lee), FCC chair Dr. Malathi Balasundaram and a Family Partnership Council member. During this time, parents of current NICU babies can rely on having a safe environment to share their experiences, discuss concerns, and meet and connect with other NICU families. This is an excellent time for parents to inquire about and discuss discharge planning and what to expect while parenting a NICU baby long-term. We always have a former NICU parent in attendance to share their experiences of NICU parenting both during hospitalization and after discharge. The staff of Parent Exchange focuses on the importance of self-care, how to connect with their baby, and informing parents of their crucial role as part of their child’s care team. Resources are offered to parents to connect with additional support through online platforms, including our own unique El Camino Hospital Slack Community. 
  2. El Camino Health NICU Slack community: Parents can connect exclusively with former El Camino Health NICU families to share stories, build a broader yet local NICU parent support system, get parenting tips and baby equipment recommendations as well as have an exciting place to share their infant’s progress as they grow! We have ~170 local veteran NICU families in this community. The FCC chair invites the current NICU families to join the Slack group if they are interested. They can read the stories of prior NICU families and their thriving babies or post questions to the group. It is created and run by former parents; no staff members except the FCC core team are part of this community. 
  3. Parent activities and involvement:
    1. Early skin-to-skin (kangaroo) care 
    2. Early hand expression and oral care with mother’s own milk by parents and staff 
    3. Reach out and read program 
    4. Infant massage program starting at 32 weeks 
    5. Appropriate developmental care programs developed by rehabilitation therapists to start from the first week of life in the NICU, and staff are trained to perform and assist families 
    6. Bedside binders for parents to track their infant’s progress and significant milestones and disseminate important resource information. 
    7. Post-discharge follow-up phone call program 
  4. Parent buddy program: Parents are connected to compatible veteran parents to support the families during NICU stay and after discharge. In El Camino Health, we collected separate NICU-specific Press Ganey scores and solicited families to complete the survey after discharge. Nurses making follow-up phone calls reminded the families about the survey. We used the survey results and targeted better scores as an incentive to win the administrator’s support. The hospital patient experience and leadership team assisted the program by recruiting a parent buddy expert as a consultant and a trauma therapist from Maternal Outreach Mood Services (MOMS) to start this program. A parent buddy team with veteran parents, nursing staff, rehabilitation therapists, NICU nursing manager, physicians, and a maternal social worker was formed in September 2018. The team met monthly to discuss and develop goals, training, matching process, and program evaluation. Relevant documents such as mentee consent, mentor medical release form, mentor/mentee evaluation forms, and mentor education materials for online and in-person training were created over the next six months. We recruited a NICU nurse educator as a program coordinator. Due to time restraints, we did 2 hours of online training and 2 hours of in-person training for mentors. Six veteran parents on our family advisory board volunteered to become initial mentors and trained in March 2019. Following that, a second set of parents were trained three months later. The first mentor-mentee pair was matched in April 2019. Mentor training continued virtually during the pandemic, and we currently have 18 NICU veteran parents in the program. In supporting mentors, the FAB suggested starting a unit-specific Slack community. This now supports the parent buddy program and all other families in the NICU. We recruit new mentors during our annual NICU reunion program a couple of years after NICU discharge. Parents who benefited from the parent buddy program are willing to return the favor to other families, and we have several veteran parent volunteers to train annually. Plans are in progress to return to in-person training in 2023. As of today, we have 47 NICU parents supported by this program. 

    Evaluation comments from the mentees, 

    “I think this needs to be structured as a friendship as opposed to a Mentor/Mentee format. This is not an equal experience; therefore, you can never truly be “the Mentor” you are a friend who had your experience and may be able to relate and be empathetic at a few or many levels.” 

    “Parenting in the NICU can be such a challenging and stressful experience for parents. Connecting through the El Camino Parent Buddy Program gives experienced NICU parents a way to help others feel supported and understood during an emotional time with the goal of helping them feel supported and empowered in the ways they need the most”. 

    “At a time when everything feels crazy and out of our control, it’s nice to know that something as simple as a basic human connection can have a positive effect.” 

    “Strongly recommend to NICU parents to provide moral support to mentees.” 
Interview Questions for Parent Buddy Applicants
  1. Tell me a bit about your connection to El Camino Hospital. When was your baby born and at what gestation? “What challenges did your baby face or overcome during their NICU stay? Did they face any challenges after graduation from the NICU? How old is your baby today? Tell us about them!”
  2. What do you imagine the role of a parent buddy to be?
  3. Why are you interested in becoming a parent buddy?
  4. What are 2 or 3 of your strengths you would bring as a parent buddy?
  5. Tell me about a challenging or problem situation you had in coping with your baby’s early birth and how you handled it.
  6. Please give an example of how you prefer to communicate with health care professionals.
  7. What is an example of how you manage or reduce your stress?
  8. What time-commitment would you be able to make to being a parent buddy?

FIGURE: Neonatal Parent to Parent Support Program Development description

FIGURE: NICU Parent Buddy Program Process Flow diagram

FIGURE: Parent Buddy Program application form

FIGURE: Buddy Matching Process overview

It is estimated that each year 10% of newborn infants require NICU admission due to being born sick and/or premature. Neonatal hospitalization can have a profound and pervasive negative impact on parents due to being separated from their infants and the unfamiliar and technological nature of the unit. As discussed above, every NICU can implement effective interventions when the infant is admitted to the NICU. In premature birth, interventions can be initiated at the time of the initial meeting during prenatal consultation. As maternal and neonatal health professionals, we are responsible for developing appropriate programs to support families in every NICU. Individual and group parental support, education, and resources will help the families confidently participate in the daily infant’s care. These activities are therapeutic to the parents and improve the infant’s clinical and neuro-developmental outcomes. 

References: 

  1. Phuma-Ngaiyaye E, Welcome KF. Supporting mothers to bond with their newborn babies: strategies used in a neonatal intensive care unit at a tertiary hospital in Malawi.Int J Nurs Sci. 2016; 3:362–6. 
  2. López-Maestro M, Sierra-Garcia P, Diaz-Gonzalez C, Torres-Valdivieso MJ, Lora-Pablos D, Ares-Segura S, et al. quality of attachment in infants less than 1500 g or less than 32 weeks. Related factors. Early Hum Dev. 2017;104: 1–6. 
  3. Gribble K. Promoting attachment in foster parents: what we can learn from the experience of parents of premature infants. Adopt Foster. 2016; 40:113– 27. 
  4. Lavallée A, Aita M, Bourbonnais A, De Clifford-Faugère G. Effectiveness of early interventions for parental sensitivity following preterm birth: a systematic review protocol. Syst Rev. 2017; 6:62–6. 
  5. Fernández Medina IM, Granero-Molina J, Fernández-Sola C, Hernández- Padilla JM, Camacho Ávila M, López Rodríguez M del M. Bonding in neonatal intensive care units: experiences of extremely preterm infants’ mothers. Women Birth. 2018; 31:325. 
  6. Huhtala M, Korja R, Lehtonen L, et al. Associations between parental psychological well-being and socio-emotional development in 5-year-old preterm children. Early Hum Dev. 2014;90(3):119-124. 
  7. Shaw RJ, Bernard RS, DeBlois T, Ikuta LM, Ginzburg K, Koopman C. The relationship between acute stress disorder and post-traumatic stress disorder in the neonatal intensive care unit. Psychosomatics. 2009;50(2):131-137. 
  8. Vigod SN, Villegas L, Dennis CL, Ross LE. Prevalence and risk factors for postpartum depression among women with preterm and low-birth-weight infants: a systematic review. BJOG. 2010;117(5):540-550. 
  9. Lefkowitz DS, Baxt C, Evans JR. Prevalence and correlates of posttraumatic stress and postpartum depression in parents of infants in the neonatal intensive care unit (NICU). J Clin Psychol Settings. 2010;17(3):230-237. 
  10. Cyr-Alves H, Macken L, Hyrkas K. Stress and symptoms of depression in fathers of infants admitted to the NICU. J Obstet Gynecol Neonatal Nurs. 2018;47(2): 146-157. 
  11. Yildiz PD, Ayers S, Phillips L. The prevalence of posttraumatic stress disorder in pregnancy and after birth: a systematic review and meta-analysis. J Affect Disord. 2017; 208:634-645. 
  12. Greene MM, Rossman B, Patra K, Kratovil AL, Janes JE, Meier PP. Depression, anxiety, and perinatal-specific posttraumatic distress in mothers of very low birth weight infantsin the neonatal intensive care unit. J Dev Behav Pediatr. 2015;36(5):362-37 
  13. Umberger E, Canvasser J, Hall SL. Enhancing NICU parent engagement and empowerment. Semin Pediatr Surg. 2018;27(1):19-24 
  14. Bracht M, O’Leary L, Lee SK, O’Brien K. Implementing family-integrated care in the NICU: a parent education and support program. Adv Neonatal Care. 2013;13(2):115-126. 
  15. Premji SS, Pana G, Currie G, et al. Mother’s level of confidence in caring for her late preterm infant: A mixed methods study. J Clin Nurs. 2018;27(5–6):e1120-e1133. 
  16. Dahan S, Bourque CJ, Reichherzer M, et al. Beyond a seat at the table: the added value of family stakeholders to improve care, research, and education in neonatology. J Pediatr. 2019;207:123-129.e2. 
  17. Bourque CJ, Mantha G, Robson K, Reichherzer M, Janvier A. Improving neonatal care with the help of veteran resource parents: an overview of current practices. Semin Fetal Neonatal Med. 2018;23(1):44-51. 
  18. Kim AR, Tak YR, Shin YS, Yun EH, Park HK, Lee HJ. Mothers’ perceptions of quality of family-centered care and environmental stressors in neonatal intensive care units: predictors of and relationships with psycho-emotional outcomes and postpartum attachment. Matern Child Health J. 2020:1– 11. https://doi.org/10.1007/s10995-020-02876-9
  19. Dahan S, Bourque CJ, Reichherzer M, Prince J, Mantha G, Savaria M, Janvier A. Peer support group for families in Neonatology: Why and how get started? Acta Paediatr. 2020 12;109(12):2525-2531 

Disclosures: No conflicts have been identified