Abstract
Aim: To help first time NICU mothers identify signs of stress in their infants and evaluate the
impact of this education on the mother’s confidence and engagement in caring for their babies. Background: Given the immaturity of their body systems, premature infants are particularly
susceptible to the harmful effects of the stress response. It is therefore common practice in neonatal intensive care units (NICU) to minimize painful and stressful experiences through interventions such as clustered care, swaddling, non-nutritive sucking, and skin-to-skin contact. Despite the frequent discussion of stress and its consequences, many NICU parents are unsure of how to tell when their child is stressed and how to help them. To empower parents to engage in infant care confidently and promote appropriate parent-infant bonding, it is important to equip them with the knowledge to feel comfortable and safe when interacting with their babies. Method: This was a pilot feasibility study with quasi-experimental design using a single group
posttest (n=6). Results were analyzed quantitatively for response means and qualitatively for themes.
Findings: After the intervention, 100% of the mothers felt that they could be more involved in
their child’s care than before, and 83% of mothers felt as though they could better identify signs of stress in their babies.
Conclusion: This study demonstrated that this type of intervention is feasible to implement in a
Introduction
Stress has been defined as “a disturbance of the dynamic equilibrium between an organism and its environment” (Newnham, Inder, & Milgrom, 2009, p. 549). When humans experience stress, the body attempts to maintain homeostasis by integrating the hypothalamic-pituitary-adrenal (HPA) axis, the immune system, and the autonomic nervous system (Granau, Holsti, & Peters, 2006). This involves preparing the body for “fight or flight” through a cascade of catecholamines and glucocorticoids (Coughlin, 2014). Overtime, however, stress becomes toxic and is known as the allostatic load (Coughlin, 2014). Even when babies are born at term, nervous system development is incomplete. Infants born preterm, therefore, are even less neurologically developed (Coughlin, 2014). This means that they are particularly vulnerable to the effects of the stress response. However, it is not just painful procedures, such as a heel lance or IV insertion, that cause stress. Preterm infants perceive daily care tasks, such as diaper changes and handling, as well as environmental stimuli like noise and light, as stressful
(Coughlin, 2014). It is estimated that throughout their Neonatal Intensive Care Unit (NICU) stay, infants might undergo up to 700 procedures throughout hospitalization, 200 handling episodes in 24 hours, and 90 heel pricks in two weeks (Newnham, Inder, & Milgrom, 2009, p. 550). Even without painful procedures and handling, maternal separation is a stressor for the preterm infant (Coughlin, 2014).
frontal and parietal brain width, motor behavioral abnormalities, and altered functional connectivity in the temporal lobe in premature babies. Greater neonatal stress was associated with lower cognitive and motor function at eight and 18 months corrected age and increased anxious and depressed behaviors at age seven (Vinall & Grunau, 2014). Toxic stress results in HPA axis dysfunction, which is a precursor to insulin resistance, intestinal autoimmune disorders, mental health problems, as well as cardiovascular disease (Coughlin, 2014).
It is imperative, therefore, to appropriately manage and reduce stressful experiences in the NICU. The literature is replete with non-pharmacological interventions to comfort infants during painful procedures, including non-nutritive sucking, swaddling, and kangaroo care. To promote and advocate for such interventions, healthcare workers and parents must be able to identify when infants are stressed. NICU parents identified a desire to be involved in their babies’ pain management but cited a lack of knowledge as one of the most significant barriers to involvement and felt that parental counseling would be the most significant factor promoting engagement (Palomaa, Korhonen, Polkki, 2016). A randomized controlled trial by Franck, Oulton, and Bruce (2012) revealed similar findings: a desire for more information regarding how to be involved as well as more opportunities to be involved.
promoting appropriate infant growth and development, reducing infant stress, alleviating parental stress related to infant pain, and increasing parental engagement (Axelin, Lehtonen, Pelander, & Salanterä, 2010).
Purpose
The purpose of this project was to assist first time NICU mothers to identify signs of stress in their preterm babies. This had the goal of increasing the mothers’ confidence in caring for their babies as well as their perceived ability to recognize symptoms of infant stress during diaper change.
Literature Review
A literature review was performed to analyze existing data on parental involvement in infant pain and stress management in NICUs. Search criteria included phrases such as “parental involvement in NICU care,” “neonate pain and stress management,” and “parent participation in infant care in the NICU.” Criteria were entered into Google Scholar and PubMed databases, and articles written in English and published between 2008-2017 were included. The articles include qualitative studies, systematic reviews, randomized controlled trials, and a focused ethnography.
Two articles addressed factors supporting and hindering parental involvement in infant pain management. In a qualitative study by Palomaa, Korhonen, and Polkki (2016) parents noted the NICU’s restrictive environment and a lack of knowledge regarding infant pain to be the two
most significant barriers to involvement, while parental counseling by staff was the most
supportive. Parents received information about procedures, their role during procedures, and the
significance of parental presence during the procedure, all of which promoted parental
participation in pain relief. Parents found it most helpful when a variety of teaching methods
highlighted the importance of providing continuous encouragement and teaching to parents
throughout their stay in the NICU, not just at the beginning. Franck, Outlon, and Bruce (2012)
discuss a randomized controlled trial in which the intervention group received a booklet about
pain management and comfort in the NICU as well as two education sessions about how to apply
comforting techniques, while the control group did not. The study revealed that parents wanted
more information about their infant’s pain and ways to be involved. These articles highlight a
need for more education and attention to parents to empower them to play a role in managing
their infant’s comfort.
Obeidat, Bond, and Callister (2009) conducted a systematic review of 14 qualitative
studies to describe the experience of NICU parents. The studies showed that infant pain and
discomfort and the inability to perform a normal parenting role were the main sources of parental
distress (Obeidat, Bond, & Callister, 2009, p.24, 26). Findings from a qualitative experiment by
Phuma-Ngaiyaye and Kalembo (2016) echo this: NICU hospitalization requires mothers to
relinquish complete care of their infant to the nurse, resulting in the loss of the sense of parental
role (p. 364). It is important, therefore, to provide opportunities for parents to be involved and
establish consistent opportunities to fulfill the parenting role. In fact, parent involvement in
infant care and support and information from NICU staff reduced parental stress (Obeidat, Bond,
& Callister, 2009, p. 27). Furthermore, when parents were given opportunities to be involved
infant care, they felt more confident and were more connected to their child (Obeidat, Bond, &
Callister, 2009, p. 26). Phuma-Ngaiyye and Kalembo (2016) concur, noting that maternal
involvement promoted self-esteem as well as a connection with their infant, both of which
contribute to improved infant developmental outcomes. Maternal response to infant behavioral
(Phuma-Ngaiyye & Kalembo, 2016, p. 365).
Vasquez and Cong (2014) explored the progression of NICU parents from admission to discharge through analysis of 14 studies. The review identifies four factors that assist this progression: contact with their infant, relationship with the nurse, adequate information, and social support (Vasquez & Cong, 2014, p. 281). At the beginning of their child’s admission, parents desire as much information as they can tolerate, and a lack of information is the cause of frustration and anger (Vasquez & Cong, 2014). As the article notes, even moderate deficits in parent-infant attachment and bonding can negatively impact infant psychosocial growth and development, so providing parents with sufficient support and resources is essential for long-term infant health (Vasquez & Cong, 2014, p. 288). As parents become more confident and comfortable, they begin to take ownership of their child which enhances bonding.
Lee and O’Brien (2014) describe the care-by-parent model, an approach to NICU care in
which parents are trained and supported to provide as much of their baby’s care as possible, such
as bathing, feeding, diaper changes, and administer oral medications, as well as document
progress and participate in rounds. The program was implemented in 20 level 3 NICU’s in
Canada following a successful pilot in Estonia. In a previous cohort study and a randomized
controlled trial, the increased parent-infant interaction and parent education reportedly improved
infant behavior and long-term cognitive development (Lee & O’Brien, 2014, p. 846). The model
reduces parent stress by equipping them to care for their children both in the hospital and after
discharge (Lee & O’Brien, 2014, p. 846). Specific results from the pilot study include an
improved infant weight gain, 25% reduction in parental stress, and an 80% increase in
breastfeeding (Lee & O’Brien, 2014, p. 846).
solutions to implementing a model very similar to the care-by-parent model. This model, Family
Integrated Care or FICare, was developed by Mount Sinai Hospital in …. based on growing
evidence that this form of parent involvement is the most efficient way to provide high quality
care for the parent-infant dyad in the NICU. The goal of FICare is to support partnership
between NICU staff and parents, promote parent-infant bonding, and improve parent confidence
(FICare, 2017). It is more than allowing parents to be present and observe; it encourages parents
to be involved in all aspects of their infant’s care. Early evidence suggests that parents that
participated in FICare had improved readiness for discharge and less anxiety, and that infants
cared for under the model grew faster, showed less stress, and had shorter hospital stays (FICare,
2017). However, the authors note several barriers to parent involvement such as inconsistent
information from healthcare staff, locked units that restrict access, and lack of time and resources
to train staff.
To address these issues, the team at Mount Sinai Hospital suggests several novel ideas.
They developed a mobile application that involves 15 chapters of education and teaching for
parents, including information on equipment in the NICU, procedures, a glossary of medical
terms, and a developmental timeline and ways parents can interact with their child at different
stages. The app also allows parents to keep a diary of text, pictures, and videos, and chart their
baby’s growth. This ensures that parents receive consistent information which reduces the
anxiety and frustration that often stems from uncertainty and confusion. Mos NICUs are locked
units, and parents must wait for permission to enter. Fingerprinting parents is a way to provide
parents with 24/7 access to their child. Because there are often multiple babies in a room, parents
are asked to leave during rounds, which can mean separation for an hour or more, compromising
sound-blocking headphones so they can remain at the bedside without compromising confidentiality.
Although the model is not easy to implement, the extent of these innovations highlight the
importance of involving parents in all aspects of infant care in order to promote positive
outcomes for both the parent and child.
Methods Study design and setting
The was a pilot study using a quasi-experimental design with one group post-test. The setting was the newborn critical care center (NCCC) of a university affiliated hospital in southeastern United States. The NCCC is a 58-bed facility that treats approximately 750 newborns each year. The teaching intervention occurred at the infant’s bedside.
Approval was obtained from The University of North Carolina at Chapel Hill Institutional Review Board (IRB #17-2534) and the hospital’s Nurse Research Council.
Sample
The sample included first-time NICU mothers who spoke English as a first language. All babies were born between 29-39 weeks gestation. Parents were excluded from the study if the infant met any of the following criteria: 1) sedation at time of intervention 2) intubation 3) cardiovascular disorders or 4) asphyxia. Recruitment and implementation occurred over a period of three weeks in February 2018.
Description of the Intervention
comforting and calming their baby. They were given several minutes to look through the booklet before we discussed each sign together and whether or not they had seen this behavior. The mothers then changed the infant’s diaper and we observed the baby’s behaviors to relate the signs from the booklet to the child. If the baby exhibited a stress cue, we practiced implementing the comfort techniques from the booklet. Finally, the parents were given the chance to ask any questions.
Instrumentation
A nine-question pencil and paper survey was used to evaluate the booklet and the impact of the teaching intervention (see Appendix A, Table 1). The first two questions addressed demographics and the next six were Likert-type questions to evaluate the education session. An online readability service assigned the survey a 5th grade reading level, and the validity was measured by conducting cognitive interviews with women outside of the study. The mothers completed the surveys anonymously. The mothers were also asked five interview questions about the intervention and ways to improve it should the intervention be implemented elsewhere (see Appendix A, Table 2).
Procedure
suitable time for the intervention to occur. This unit operates on a clustered care schedule of 0800, 1100, 1400, 1700, and 2000, and touching the infants between these times is limited. Therefore, the researcher tried to time the interventions to coincide with one of these. The intervention was always performed at the infant’s bedside. After the teaching session and diaper change, the mother completed the survey. The last step was the discussion and interview
questions. Data Analysis
The survey responses were analyzed quantitatively to determine response means and frequencies. The interview questions were summarized and qualitatively analyzed for content to identify themes and categories of feedback.
Results
There were 28 eligible women during the data collection period, two of which had twins in the NICU, making a total of 30 eligible babies. Eight women were approached, three declined to participate, and five consented. Reasons for declining included being emotionally
overwhelmed, being too busy, and wanting to be alone with their baby. One was the mother of twins, totaling six completed interventions and survey responses The demographic results are displayed in Appendix B, Table 4.
Thematic analysis of the interview summaries showed that parents would prefer to receive this intervention on the second or third day of their stay in the NICU. One parent dyad
suggested a checklist of education topics so that the nurses knew what the baby’s previous nurses
had or had not yet covered with the parents. This would help standardize what information
parents receive and when they receive it. Two parents expressed a desire for more education but
emphasized that the information be presented a little at a time and in short segments so as to not overwhelm the parents. There was not agreement on a particular time of day, as the parents availability varies greatly. The parents agreed that diaper change was a good task for this intervention to focus on, as it is one of the first things parents begin to take responsibility for in the NICU, but still causes a good bit of anxiety as parents learn how to handle their fragile children.
Discussion
As previously noted, 100% of study participants found the teaching materials helpful
and would recommend it to future NICU mothers. Although the intervention was targeted at mothers, the father was present and actively participated with the mother in 66% of the studies. In fact, in two instances, the father appeared more engaged and involved. The remaining 33% expressed a desire for the father to hear the information as well, as the mothers felt their
husbands were more nervous in care. One mother attributed this to her sense of maternal instinct and felt her husband wanted more concrete information and facts.
not knowing these behavioral cues did not affect the mothers’ interactions with their babies However, there is the potential for response bias to this question. In retrospect, it put the mothers in a defensive position. Although the women might have felt nervous at times, they are unlikely to acknowledge this on a survey for several different reasons. They might be hesitant to admit their anxiety to themselves and expressing their confidence on this survey may serve to boost a personal sense of maternal competence. There is also the possibility that it feels socially
unacceptable to be afraid to interact with your child. Finally, the timing of the intervention might influence mothers’ response to this question. Responses would likely be different for a mother completing the survey on day one of NICU admission versus day 10.
During the study I found that it was important to approach the diaper change as a team with the mothers and enter into conversation with her, rather than talking at her. For example, when the infant exhibited signs of stress or overstimulation, it was better to point out that we might be moving too quickly, or we might need to take a break, so as to avoid implying that the mother had caused the infant’s stress. Another interesting realization was that referring to the infant’s “stress signs” also made mothers wary and defensive, while discussing the infant’s “behavioral cues” seemed to elicit more interest.
Parents seemed to appreciate the booklet, and leading the education session would have been challenging without the visual references. In particular, the mothers who were alone all mentioned that it would be helpful to show their partners. One parent commented favvorably on the simplicity of the booklet and highlighted the importance of keeping it that way.
Limitations
diverse sample, as the sample was primarily Caucasian women. Additionally, ideally the mothers would be contacted for follow-up after the initial intervention and the educator would work with mothers to identify and relieve stress in procedures in addition to the diaper change.
The demographic section of the survey only asked about the mother’s age and race. It would be helpful and informative to also ask the mother’s occupation or highest level of education. For example, one mother was an early childhood intervention specialist, and noted that she had worked with children with more complex medical needs, so she felt more comfortable and well-versed in the NICU than her husband. Finally, asking the number of other children would be useful because women might be more comfortable if they have had other children than a first-time mother. A mother’s previous experiences, whether professionally or personally, impacts her confidence and knowledge about infant care and therefore her teaching and learning needs.
Many NICU parents have other children or jobs and therefore have limited flexibility of when they can be at the bedside. This made recruitment difficult and reduced the number of eligible women that were approached, as they were not present. Additionally, because the
mothers’ time with their babies is limited, they want to spend it focused on their child rather than participating in a research study.
As previously noted, the researcher tried to time the intervention to coincide with the unit’s standard “touch times.” However, this was also when the mothers would feed their babies perform skin-to-skin, or other activities in which they wanted privacy. Without interrupting the mother-infant bonding time, it was difficult to predict when exactly during the touch time the diaper change would occur. In one of the studies, the baby had just had its diaper changed, so the intervention had to be modified.
The results of this pilot study point towards the potential usefulness of a larger scale
study. Although most parents were slightly familiar with some of the information, all agreed that
they were unfamiliar with parts and expressed an appreciation for the teaching, highlighting the
benefits of expanding this study. As previous research demonstrates, many NICU parents want to
be involved but are often limited by a lack of information. Though the standard of care in many
NICUs has seen a dramatic increase in family-centered care and parent involvement, the results
from this pilot study indicate that there is still a need for further parent education, particularly as
it relates to behavioral cues of infant stress. Parents indicated a desire to hear this information
from the nurse and early in their child’s NICU stay, thus in future iterations it would be helpful
for this to be a nurse-driven intervention implemented between one and four days after admission
References
Axelin, A., Lehtonen, L., Pelander, T., & Salanterä, S. (2010). Mothers’ different styles of involvement in preterm infant pain care. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 39(4), 415-424. doi: 10.1111/j.1552-6909.2010.01150.x
Banerjee, J. Aloysius, A., Platonos, K., & Deierl, A. (2017). Innovations: Supporting family integrated care. Journal of Neonatal Nursing 24, 48-54. doi:
http://dx.doi.org/10.1016/j.jnn.2017.11.012
Coughlin, Mary. (2014). Trauma-informed care in the NICU: Evidenced-based practice guidelines for neonatal clinicians. New York: Springer Publishing.
Erikson, E. (1950). Childhood and society. New York: Norton.
FICare. (2017). About FICare. Retrieved from http://familyintegratedcare.com/about-ficare/ Franck, L.S., Oulton, K., & Bruce, E. (2012). Parental involvement in neonatal pain
management: an empirical and conceptual update. Journal of Nursing Scholarship 44(1), 45-54. doi:10.1111/j.1547-5069.2011.01434.x
Lee SK, O’Brien, K. Parents as primary caregivers in the neonatal intensive care unit. CMAJ : Canadian Medical Association Journal. 2014;186(11):845-847.
doi:10.1503/cmaj.130818
Palomaa, A.K., Korhonen, A., Pölkki, T. (2016). Factors influencing parental participation in neonatal pain alleviation. Journal of Pediatric Nursing 31(5), 519-527. doi:
10.1016/j.pedn.2016.05.004
Phuma-Ngaiyaye, E. & Kalembo, F.W. (2016). Supporting mothers to bond with their newborn babies: Strategies used in a neonatal intensive care unit at a tertiary hospital in Malawi. International Journal of Nursing Sciences 3, 362-366. doi:
http://dx.doi.org/10.1016/j.ijnss.2016.10.001
Obeidat, H. M., Bond, E. A., & Callister, L. C. (2009). The Parental Experience of Having an Infant in the Newborn Intensive Care Unit. The Journal of Perinatal Education, 18(3), 23–29. http://doi.org/10.1624/105812409X461199
Skene, C., Franck, L., Curtis, P. and Gerrish, K. (2012), Parental Involvement in Neonatal Comfort Care. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 41: 786–797. doi:10.1111/j.1552-6909.2012.01393.x
Vasquez, V., Cong, X. (2014). Parenting the NICU infant: A meta-ethnographic synthesis. International Journal of Nursing Sciences 1(3), 281-290. doi:
https://doi.org/10.1016/j.ijnss.2014.06.001
Appendix A
Parent Survey and Interview Questions Table 1.
Parent Survey
Part 1: Demographic Information: Please circle the most appropriate response.
1. Age:
18-21 22-27 28-33 34-39 40-45 46+
2. Race/ethnicity:
African-American American Indian Asian Hispanic/Latino White Other:
Part 2: Intervention Evaluation: Please answer the following questions using Strongly Disagree (1), Disagree (2), Neutral (3), Agree (4), or Strongly Agree (5)
1. The information I was taught was easy to understand.
Strongly Agree Neutral Strongly Disagree
1 2 3 4 5
2. I have felt nervous to touch my baby because I didn’t want to hurt them.
Strongly Agree Neutral Strongly Disagree
1 2 3 4 5
3. Before the teaching intervention, I knew how to tell when my baby was stressed or
in pain.
Strongly Agree Neutral Strongly Disagree
1 2 3 4 5
4. After the teaching intervention, I feel like I can better point out when my baby is
stressed.
Strongly Agree Neutral Strongly Disagree
1 2 3 4 5
information.
Strongly Agree Neutral Strongly Disagree
1 2 3 4 5
6. I would recommend this lesson and materials to future NICU parents.
Strongly Agree Neutral Strongly Disagree
1 2 3 4 5
7. The visual materials are helpful.
Strongly Agree Neutral Strongly Disagree
1 2 3 4 5
Table 2.
Interview Questions
1. Is there a certain time of day that would have worked better for you to participate?
2. Was this a good time in your baby’s hospital stay for this teaching to occur, or would you have wanted it earlier or later?
3. This focused on diaper change—would it be helpful to have a teaching session for other care activities?
Appendix B Survey Results Table 3.
Demographic Results
Mother’s race African-American Caucasian Asian Hispanic/Latino Other
Response 0% (0) 80% (4) 0% (0) 20% (1) 0% (0)
Mother’s age 18-21 22-27 28-33 34-39 40+
Response 0% (0) 20% (1) 60% (3) 20% (1) 0% (0)
Table 4. Survey Results 1 Strongly agree 2: Agree 3 Neutral 4 Disagree 5 Strongly disagree Mean Likert Score
The information I was taught was easy to understand
100% (6) 0% (0) 0% (0) 0% (0) 0% (0) 1
I have felt nervous to
touch my baby because
I didn’t want to hurt
them
0% (0) 0% (0) 33.3% (2) 33.3% (2) 33.3% (2) 4
intervention, I knew
how to tell when my
baby was stressed or in
pain
After the teaching
intervention, I feel like
I can better point out
when my baby is
stressed
83% (5) 0% (0) 1% (17) 0% (0) 0% (0) 1.3
I feel like I can be more
involved in my child’s
care now that I know
this information
83% (5) 17% (1) 0% (0) 0% (0) 0% (0) 1.2
I would recommend
this lesson and
materials to future
NICU parents
83% (5) 17% (1) 0% (0) 0% (0) 0% (0) 1.2
The visual materials
were helpful
