Parental Involvement in Early Infant Stimulation in the NICU: A Comprehensive C ourse Overview

1. Parental Involvement in Early Infant Stimulation in the NICU: A Comprehensive Course Overview Daphna Yasova Barbeau, MD Instructional Design, Spring 2014

2. Need for Instruction Many parents in the NICU are terrified. Terrified about their infant outcomes, terrified to ask the wrong questions, and worse, terrified even, just to touch their own child. Johnson et al. (2005) and Melynk et al. (2000) noted that there are high levels of emotional distress for parents of NICU infants and that that the anxiety of having a child in the NICU doesn’t end while they are admitted. In fact, symptoms can extend for years after a child is born. In such a stressful, often seemingly hopeless situation, it would be nice to give parents back some control and let them be a part of the healing process in their infants. In 2004 The AAP released an article outlining the effects of a behavioral-educational intervention model focused on parent involvement (COPE). They found that nurses rated mothers to be more involved in their infant’s physical/ emotional care, an increase in maternal beliefs about their impact on care and even fewer behavioral problems for children in the intervention group later in life. Liu et al. (2007) described that there are things we can do to optimize infant neurodevelopment; maintaining appropriate sleep patterns, limiting excessive stimulation, skin to skin contact, containment, and gentle touch. All of these activities can be performed by parents as an adjunct to our medical interventions. This project strives to incorporate neurodevelopment enhancing activities with parental involvement in this early stimulation. The mechanism proposed are video vignettes that deal with common NICU problems/ concerns and basic interventions that can increase infant development.

3. Needs Continued… • The educational gap to be addressed by this curriculum fills multiple needs. In regards to felt needs, the physicians, occupational therapists and physical therapists in our NICU have often expressed that they wished parents would be more involved in their child’s care. It has also been well documented that infants who have been in the NICU are often delayed developmentally. For some, this is because of disease state, especially in regards to prematurity, for others, it is for the sheer fact that they are not being exposed to developmentally appropriate activities. It has also been noted by our staff that parents quickly become engaged in infant development upon leaving the NICU, however, it would be nice to begin that transition before infant’s leave the NICU.

4. Our Needs Assessment • Most of the families that completed the survey listed themselves as daily visitors to the NICIU and yet, of the seven developmental activities we surveyed parents about, only 35% of parents were at the expected level for time spent in developmental activities. This would amount to 1.5-3 hours each day but includes feeding and holding the infant. Even parents who listed they were in the NICU for multiple hours per day were spending very little time in developmentally appropriate activities. (It is often noted by staff that parents may spend hours a day literally just sitting at the bedside, with very little infant interaction). Not surprisingly, the areas where caregivers spent the most of their time was holding, feeding and singing to baby. (Note regarding feeding: in our NICU nurses provide all of the hands on care not done by the families- this often amounts to nurses doing the majority of feeding, changing and bathing infants. In other countries, families are expected to be in the NICU around the clock, feeding and caring for infants). Where families spent the least amount of time, was in motor stimulation, visual stimulation and shockingly kangaroo care.

5. Learners The learners to be served in this course include the parents/ care givers of infant in the NICU. The course is optimally to be used first when parents initially enter the NICU and then likely again when the infant is downgraded to the step down unit. We have found that it is very difficult to have parents (and for that matter, practitioners) focus on development when infants are critically ill. The learner group we have, is extremely diverse. Because our institution is such a large referral center, we have patients from all across Florida, Georgia, Alabama and Louisiana. Often these learners will be far from home with very little support. We also have families from a variety of races and cultures. Though the unit is comprised of mostly Caucasian and African Americans, we have a large Hispanic migrant population, Korean population and Middle Eastern populations. While fathers are often involved in the care of their infants, the majority of parents that are at bedside, receiving information most often, are mothers. It is well known that many NICU infants are born to mother’s with low socioeconomic status. Often illnesses that cause preterm labor and premature infants are more prevalent in lower SES families. Poor access to prenatal care, malnutrition, drug use, and stressors can lead to premature delivery of infants and all of these premature infants are placed into the NICU for further care. Lower SES is also often associated with lower school achievement, so the course will need to be easy to understand even for people with little high school education. However, this is not true for all of our families and there are many infants in the NICU born to families with high academic achievement so the course will also need to cater to them. Fortunately, when it comes to health literacy, the majority of the country is often at the same level despite having higher education or not.

6. Theoretical Framework • This project outline is based in behaviorism. What I learned during my evaluation (and re evaluation!) of my curriculum is that parents had poor understanding of why developmentally stimulating activities were important. • So many of our parents are just passive observers of the NICU “process” that they take very little initiative in providing interactions with their infants. What I aim to change through this curriculum is the parents daily behaviors with their infants by helping them understand why each activity is beneficial to their infant. By targeting their individual situations and motivations for working with their infant we can improve their self-efficacy and confidence to be a part of their infant’s care.

7. A Cognitive Apprenticeship • Each activity is specifically outlined down to the very basic steps of mentally and physically preparing both the parent and the infant for the interaction. After giving them the tools they need, our most important outcome measure is an increase in “overall daily infant interaction”. • The goal is that the family can integrate these activities seamlessly into their daily life with a final outcome of placing NICU graduates on a more “normal” developmental pathway.

8. Why an Online Curriculum? • Well, the NICU is a very stressful place. We have found that no matter how many times we may explain certain things to parents, they are just not able to process all the information while at the bedside, with all the people and noise. • By having an online curriculum, parents (in addition to other caretakers and siblings!) can go about the course at their own pace and can review the information in a quiet, familiar, comfortable place.

9. Other neat tricks about a Web Based, Mobile device friendly program Parents can use these interactive videos with their infant’s at the bedside! Or reference the material when they need it most, right there with their infant! We had also previously surveyed our parent population and despite socioeconomic status, nearly all parents had access to the internet, if only via mobile phone!

10. Goals “Observation of developmentally delayed NICU graduates coupled with the need for intervention early in the newborn period for optimal development and discussion with families of infants in the NICU confirmed the need for early parental involvement in infant stimulation to improve developmental outcomes for our NICU graduates. This is felt to be best achieved, via an interactive, online curriculum.”

11. Objective #1 After completing the instructional unit, the learner will be able to explain why early parental involvement is important in their particular infant’s development. • -Presentation: Discussion based upon normal infant interactions and why the NICU admission disrupts this process. • -Generative strategy: (organizational) Family will discuss how their specific baby's life and interactions would have been different at home, instead of the NICU and what they would be doing on a daily basis that actually helps support infant development. Then they will discuss what is different about the NICU lifestyle. • -Testing: Be able to verbalize why the particular NICU situation affects their infants development and what areas they need to focus on specifically. (physical, social, cognitive). • Note: On Quantitative evaluation of participants, all of them shower some increased insight on why their infants can benefit from increased and more specialized stimulation.

12. Objective #2 After completing the instructional unit the learner will be able to demonstrate specific basic knowledge about infant development. • -Presentation: Learner will review the instructional materials about the various types of development. • -generative strategy: (recall). • -testing: to answer 8/10 multiple questions correctly regarding infant development. • Note: On average our test participants were scoring ~47% on basic knowledge of development. After completing the curriculum, the average score was 98%.

13. Objective #3 After completing the instructional unit the learner will integrate at least 50% more developmentally appropriate activities into their daily interactions with their infant. • -Presentation: Videos and written instruction will be provided and bedside nurse and resident assigned to family will provide hands on assistance in performing the activities with the infant. • -generative strategy: (application) • -testing: a greater than 50% increase in developmentally appropriate interactions daily. In addition, would like to see families integrate at least 2 new developmental activities than they already do daily. • NOTE: on our test participants, all of them demonstrated an increase in developmentally stimulating daily activity (per day present in the NICU).

14. Objective #4 After completing the instructional unit, the learner will be prepared to continue developmentally appropriate activities at home. • -presentation: Parents will be provided with long term developmental plans and parents will be expected to set up appropriate resources. • -generative strategy: Organizational and application • -testing: demonstrate appropriate developmental activities and have OT/PT and home activities planned for infant prior to discharge. • Note: None of our test family infants were prepared for discharge however, all families demonstrated an understanding of WHY this developmentally specific follow up was indicated.

15. The Format? • The website is produced in a mixed media format. • The parents will be provided with both written, informative and accurate information regarding infant development. • Each section has at least one video, (our parents noted that they loved videos!) expected to demonstrate a particularly important developmentally appropriate activity. Some of these videos actually include media that can be used for their interactions with their infants.

16. Sequence of sections? • The following sequence was thought to be most intuitive for families. Parents can progress “through the course” in a time course that best suits their needs. The plan is for each family to be provided with the instructional unit upon admission (for most babies this means birthday) and then allow them to use the modules as “needed”. (Ie: they can emotionally move on to the next step, or their infant is medically strong enough to progress.

17. Module Outline(the top bun!) Welcome to the NICU- This just strives to help families “acclimate” to their overwhelming new environment. Infant Bonding and Social Development- Once the parents are “ready” this needs to happen as quickly as possible! If parents don’t bond early in the course of NICU admissions, sometimes they don’t bond at all! And babies need as much parental comfort as they can get! Infant Growth and Nutrition- Just basic info for families about why we do what we do and a specific module to help encourage breast feeding!

18. Module Outline cont’d. (the meat of the sandwich!) • Why is it important to focus on your infant’s development? Just like it states, this is an important cognitive step in parent’s motivation to engage with their infant in the manner • Specific modules for Motor, Visual and Language/Hearing Development: This steps parents through the interactive process and provides them with a step by step process of how to interact with their baby that is the most educational for an infant.

19. Module Outline Cont’d.(the bottom bun!) • Support Services: This module is exactly what it sounds like. Just another way to show parents that they are supported. Various studies have show that emotionally stable parents were the most successful in providing appropriate interactions with their infant. • Transitioning to Home: Now that we have set up an expectation for developmentally appropriate care and parents are immersed in a setting that values infant development, we need to just point them in the direction of appropriate resources and help them secure them.

20. So how do I get started?! Please visit the Early Infant Stimulation Site at: www.EarlyInfantStim.Wikispaces.com

21. Learner Evaluation • Documents are provided on the website as well. • Please visit the module labeled “Participant Evaluation Documents” where you can download our pre and post test. Of note, the survey listed is used as both the pre and post test. We expect parents to show improvement on these documents as listed in Objectives 2 & 3.

22. Bibliography • Bonnier, C. (2007) Evaluation of early Stimulation programs for enhancing Brain Development. ActaPediatrica. ISSN 0803-5253 • Caskey, Melinda et al. (2014) Adult Talk in the NICU With Preterm Infants and Developmental Outcomes. Pediatrics. e578-e582 • Hernandez-Reif, A. et al. (2007) Preterm Infants Show Reduced Stress Behaviors and Activity After Massage Therapy; Infant BehavDev; 30(4); 557-561 • Liu W., Laudert, B., et al. (2007) The development of potentially better practices to support neurodevelopment of infants in the NICU. Journal of Perinatology. 27, S48-S74. • Melynk, B. et al. (2000) Maternal Anxiety and Depression Following a Premature Infants’ Discharge from the NICU; Nurs Res; 57(6); 383-394 • Melnyk, B.M., Alpert-Gillis L., et al (2004) Creating Opportunities for Parent Empowerment: Program Effects on the Mental Health/ Coping Outcomes of Critically Ill Young Children and their Mothers. Pediatrics. 113e597

23. Bibliography Cont’d. • Dave S. Knowlton et al. 2010. Computer-based instruction and generative strategies: Conceptual Framework & Illustrative example. Comput. Hum. Behav. 26, 5 (September 2010), 996-1003. • http://www.ala.org/acrl/sites/ala.org.acrl/files/content/aboutacrl/directoryofleadership/sections/is/iswebsite/eventsconferences/preconferencean05designing.pdf. Downloaded on February 17, 2014 • AngiahDavis. 2013. Using Instructional Design principles to develop effective information literacy instruction. The Addie Model. College and Research Libraries News.Vol 74 no (4) 205-207 • Lou et al. 2011. The Systematic Design Of Instruction, Chapter 11. Pearson. • Stromswold, KI, Sheffield E., (2004) NICU Noise & Language Development. Rutgers Univeristy Center for Cognitive Science Technical Report.