Developmental Care in the NICU Eric Reynolds, MD, MPH Neonatologist Kosair Children’s Neonatal Specialists, Louisville, KY

The speaker has signed a disclosure form and indicated he has no significant financial interest or relationship with companies or the manufacturer(s) of any commercial product/service that will be discussed as part of this presentation.

Session Summary

This session will provide an overview of rationale for, and interventions included in, developmental care of the newborn, as well as a scientific evaluation of the evidence for these interventions.

Session Objectives - need

Upon completion of this presentation, the participant will be able to:

define neurodevelopmental care for at-risk premature infants;

explain the pathophysiologic impact of prematurity on neurologic development, pre- and post-birth;

describe the NIDCAP clinical practice approach: Newborn Individualized Developmental Care and Assessment Program

review pertinent evidence-based research supporting the importance of an appropriate neurodevelopmental approach when caring for premature infants.

References

Averill Jr., D.R., Moxon, E.R., Smith, A.L. (1976). Effects of Haemophilus influenzae meningitis in infant rats on neuronal growth and synaptogenesis. Experimental Neurology, 50(2): 337-45.

Bass, N.H., Netsky, M.G. & Young, E. (1970). Effect of neonatal malnutrition on developing cerebrum. II. Microchemical and histologic study of myelin formation in the rat. Archives of Neurology, 23(4): 303-13.

Bass, N.H., Netsky, M.G. & Young, E. (1970). Effects of neonatal malnutrition on developing cerebrum. I. Microchemical and histologic study of cellular differentiation in the rat. Archives of Neurology, 23(4): 289-302.

Benítez-Bribiesca, L., De la Rosa-Alvarez, I. & Mansilla-Olivares, A. (1999). Dendritic spine pathology in infants with severe protein-calorie malnutrition. Pediatrics, 104(2): e21.

Boere-Boonekamp, M.M., van der Linden-Kuiper, A.T. & van Es, P. (1997). Preferential posture in infants; serious demands on health care]. Ned Tijdschr Geneeskd, 141(16): 769-72.

Bourgeois, J.P., Jastreboff, P.J. & Rakic P. (1989). Synaptogenesis in visual cortex of normal and preterm monkeys: evidence for intrinsic regulation of synaptic overproduction. Proceedings of the National Academy of Sciences of the United States of America, 86(11): 4297-301.

Brock, J.W. & Prasad, C. (1992). Alterations in dendritic spine density in the rat brain associated with protein malnutrition. Brain Res Dev Brain Res, 66(2): 266-9.

Coleman, P.D. & Riesen, A.H. (1968). Environmental effects on cortical dendritic fields. I. Rearing in the dark. Journal of Anatomy. 102(Pt 3): 363-74.

Cordero, M.E., Trejo, M., García, E., et al. (1985). Dendritic development in the neocortex of adult rats subjected to postnatal malnutrition. Early Human Development, 12(3): 309-21.

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Fay, M.J. (1988). The positive effects of positioning. Neonatal Network, 6(5): 23-8.

Ferrer, I., Soriano, E., Martí, E., Digón E, et al. (1991). Development of dendritic spines in the cerebral cortex of the micrencephalic rat following prenatal X-irradiation. Neuroscience Letters, 125(2): 183-6.

Globus, A. & Scheibel, A.B. (1967). The effect of visual deprivation on cortical neurons: A Golgi study. Experimental Neurology, 19(3): 331-45.

Greenough, W.T., Hwang, H.M. & Gorman C. (195). Evidence for active synapse formation or altered postsynaptic metabolism in visual cortex of rats reared in complex environments. Proceedings of the National Academy of Sciences of the United States of America, 82(13): 4549-52.

Hicks, S.P., Cavanaugh, M.C. & O’Brien (1962). Effects of anoxia on the developing cerebral cortex in the rat. American Journal of Pathology, 40: 615-35.

Horn, G. (1955). Thyroid deficiency and inanition: The effects of replacement therapy on the development of the cerebral cortex of young albino rats. The Anatomical Record, 121(1): 63-79.

Lagercrantz (2002). The newborn brain. Cambridge, MA: Cambridge University Press.

Long, J.G., Lucey, J.F. & Philip, A.G. (1980). Noise and hypoxemia in the intensive care nursery. Pediatrics, 65(1): 143-5.

Mirmiran, M. & Ariagno, R.L. (2000). Influence of light in the NICU on the development of circadian rhythms in preterm infants. Seminars in Perinatology, 24(4): 247-57.

Murdoch, D.R. & Darlow, B.A. (1984). Handling during neonatal intensive care. Archives of Diseases in Childhood, 59(10): 957-61.

Oda, M.A. & Huttenlocher, P.R. (1974). The effect of corticosteroids on dendritic development in the rat brain. Yale Journal of Biology and Medicine, 47(3): 155-65.

Penn, A.A. & Shatz, C.J. (1999). Brain waves and brain wiring: The role of endogenous and sensory-driven neural activity in development. Pediatric Research, 45(4 Pt 1): 447-58.

Pysh, J.J., Perkins, R.E. & Beck, L.S. (1979). The effect of postnatal undernutrition on the development of the mouse Purkinje cell dendritic tree. Brain Research, 163(1): 165-70.

Seidler, F.J. & Slotkin, T.A. (1992). Fetal cocaine exposure causes persistent noradrenergic hyperactivity in rat brain regions: effects on neurotransmitter turnover and receptors. Journal of Pharmacology and Experimental Therapeutics, 263(2): 413-21.

Sirevaag, A.M. & Greenough, W.T. (1987). Differential rearing effects on rat visual cortex synapses. III. Neuronal and glial nuclei, boutons, dendrites, and capillaries. Brain Research, 424(2): 320-32.

Takashima, S., Mito, T. & Becker, L.E. (1985). Neuronal development in the medullary reticular formation in sudden infant death syndrome and premature infants. Neuropediatrics, 16(2): 76-9.

Uno, H., Lohmiller, L., Thieme, C., et al. (1990). Brain damage induced by prenatal exposure to dexamethasone in fetal rhesus macaques. I. Hippocampus. Brain Res Dev Brain Res, 53(2): 157-67.

Valverde, F. (1967). Apical dendritic spines of the visual cortex and light deprivation in the mouse. Experimental Brain Research, 3(4): 337-52.

West, C.D. & Kemper, T.L. (1976). The effect of a low protein diet on the anatomical development of the rat brain. Brain Research, 107(2): 221-37.

Wiesel, T.N. (1982). Postnatal development of the visual cortex and the influence of environment. Nature, 299(5884): 583-91.

Yoshioka, H., Yoshida, A., Ochi, M., et al. (1986). Dendritic development of cortical neurons of mice subjected to total asphyxia: A Golgi-Cox study. Acta Neuropathologica, 70(3-4): 185-9.

www.nidcap.org

Session Outline

See handout on the following pages.

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Eric Reynolds, MD MPH Kosair Children’s Neonatal Specialists Norton Healthcare Louisville, KY

Developmental Care of the Newborn

Disclosure

Nothing to disclose Author is NOT affiliated with NIDCAP.

Objectives Definition Neurodevelopmental review Clinical practices Supporting research Implementing developmental care

Foundation

Nothing we do can replicate intrauterine environment… but we can do our best to try.

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Definition

A philosophy of care that uses a range of neurodevelopmentally supportive medical and nursing interventions to decrease the stress of preterm neonates in the NICU

Normal Development

The orderly development of movement, tone and reflex responses depends on the formation of a complex neuronal synaptic network, which involves a precise sequence of developmental processes.

Normal Development Including

Proliferation of the total complement of neurons in the brain Followed by migration of neurons to specific sites within the CNS Organization of synaptic interconnections

Normal Development Plasticity– Cortical projections deprived of their normal target seek out comparable targets and retain their orderly pattern of development

Even if there is early insult, there is still opportunity to maximize potential outcomes.

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Motor Neuron Development Rostrocaudal Ventrodorsal Large neurons sooner than small ones

Neurodevelopment Neuronal proliferation

Neurons formed in the subependymal germinal matrix Proliferation: 8-24 weeks (peak 12-20 weeks) When neurons complete proliferation → migrate

Neuronal migration Peak period 12-25 weeks gestation intermediate zone → cortical plate → multiple layers

Neurodevelopment Organization

Differentiation of neurons after migration Peak period: 24 weeks – several years after birth Processes

Neurons attain proper alignment, orientation and layering Formation of dendritic and axonal processes and synaptic contacts Selective cell death (apoptosis) – elimination of neuronal processes and synapses Proliferation and differentiation of glial cells

Disorders lead to behavioral, cognitive issues, ADHD Proper connections are critical for further development Elaborate circuitry of CNS

Myelination Begins by 11 wks gestation in the spinal cord...in brain during 3rd trimester. Continues into adulthood Most rapid phase of myelination occurs during the first 6 months of postnatal life In peripheral nervous system, motor roots before sensory…in CNS, sensory before motor.

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Posture and Tone

Explained by progression of myelination

Axial extension typically precedes flexion Finger flexion precedes extension Preference for right-sided head turning

Medial Subcorticospinal Pathway 24-30 weeks

Lateral Subcorticospinal Pathway 28-34 weeks

Corticospinal Tracts term

Posture

At 28 weeks, the quiet infant lies with minimal flexion of the limbs. At 32 weeks, there is distinct flexion of the lower extremities at the hips and knees. At 36 weeks, flexor tone in the lower extremities gives popliteal angle of 90os and consistent flexion at the elbows.

Posture Posture

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Lagercrantz, The Newborn Brain, Cambridge Univ. Press, 2002

Early Development of Premies <30 weeks

Remains more or less in a drowsy state Unstable physiologic signs such as cardiorespiratory changes Flaccid muscle tone, few elicited responses and jitteriness Little capacity to stay alert

Early Development of Premies 30-34 weeks

Longer periods of alertness, alternating with drowsiness and fussiness Becoming physiologically more stable Maturing motor system: disorganized movement including kicking, hand swiping, and some self-comforting movements Attentive briefly

Early Development of Premies >34 weeks

Neither shuts down nor becomes totally disorganized in the face of external stimuli Shows appropriate signs of distress: crying or squirming in response to appropriate stimuli Is able to be comforted and cuddles Attentive to caregiver

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Ex-Utero Neurodevelopment

Premies on mechanical ventilation: ↓ dendritic spines, abnormally thin dendrites (Takashima et al, Neuropediatrics, 1985) Malnutrition has negative effects on organizational events (Cordero et al, 1992; Benitez-Bribiesca et al, 1999) Environmental influences on visual cortex organization in rats and monkeys (Sirevaag et al, Brain Research, 1987; Bourgeois et al, Proc Natl Acad Sci USA, 1989) Negative effects of Haemophilus influenzae in infant rat neuronal growth and synaptogenesis (Averill et al, Exp Neurol, 1976) Evidence of anoxia on rat developing cortex (Hicks et al, Am J Pathology, 1962) Effects of thyroid deficiency on organization of cortex in albino rats (Horn et al, Anat Rec, 1955)

Ex-Utero Neurodevelopment

Reorganization of dendritic development with corticosteroids (Oda et al, Yale J Biol Med, 1974) Negative effects of low protein diet on anatomic development of the rat brain (West et al, Brain Research, 1976) Effects of darkness on cortical dendritic connections (Coleman et al, J. Anat, 1968) Effects of light deprivation on visual cortex (Globus et al, 1967; Valverde et al, 1967) Effects of undernutrition on decreased dendritic formation (Pysh et al, 1979; Bass et al, 1970) Postnatal development of the visual cortex and the influence of environment (Wiesel et al, 1982)

Ex-Utero Neurodevelopment Brain damage induced by prenatal exposure to dexamethasone (Uno et al, Dev Brain Research, 1990) Prenatal x-ray exposure in the rat and alteration of dendritic spine formation (Ferrer et al, 1991) Fetal cocaine exposure effect neurotransmitter turnover and receptors (Seidler et al, 1992) Anoxia and altered dendritic development in cerebral cortex (Yoshioka et al, 1986) Postnatal malnutrition effects on dendritic development in rat cortex (Cordero et al, 1985) Complex environmental influences on active visual synapse formation (Greenough et al, 1985) Protein malnutrition effect on dendritic spine density in the rat brain (Brock et al, Dev Brain Research, 1992)

Natural Environment Infant “expects” to develop in the womb.

Dark Warm Wet Muted sounds Boundaries

Improved understanding of the neurodevelopmental expectations of the fetal infant as expressed in the infant’s behavior may provide a reliable basis for the questioning, modification and adaptation of traditionally delivered newborn intensive care.

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NIDCAP

NIDCAP

NINININNNINININIINININIIINIIINININNNINININNNNNINININININININININN DCDCDDDCDCDDCDDCDCDCDDCDDCDCDDCDCDDCDDDCDCCDCDCDCCDDCDCDCDCDDCDCCDCDDCCCCCAPAPAPAPAPAPAPAPAAPAPAPAPAPAPAPAPAPAPAPAAPAPAPAPAPAPAAAPAAPAAAAPP“Relationship-based care puts into focus the connectedness and mutuality of all involved: Infants, families and the professional caregivers in the system.”

NIDCAP Newborn Individualized Developmental Care and Assessment Program

Dr. Als, 1986

NIDCAP (Federation International)

Vision All newborn infants in intensive and special care nurseries receive individualized, developmentally supportive, family centered care so that they may realize optimal health and developmental outcome.

Purpose To serve as the authoritative leader for research, development and dissemination of the NIDCAP and for the certification of trainers, healthcare professionals, and nurseries in the NIDCAP approach

Mission To develop and support a worldwide collaborative community of trainers, healthcare systems, professionals, families, and other partners to assure that the highest quality of individualized, developmentally supportive, family centered care is available to all newborns in intensive and special care nurseries

NIDCAP GOALS To mirror the benefits of the womb for preterm infants, the NIDCAP model minimizes outside stimuli; uses gentle-touch interventions, pain control, and other comfort measures such as swaddling and containment to support a baby during care and at rest; and promotes family bonding and participation in everyday care giving

To allow the baby to focus his or her energy on sleeping and growing, not on tolerating care

Observation of the preterm infant’s behavior provides a way to infer the infant’s developmental goals and to assess the infant’s current functional competence and state of equilibrium.

Concepts Care is focused on patient in context of family Care no longer caregiver-oriented Care involves family in supportive education from first day Even preterm babies exhibit reliably observable behaviors Care is individualized based on behavioral cues of infant at that moment We use this information to decrease stress and increase calming behaviors Goal: potentially improve neurodevelopmental outcome

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NIDCAP Synactive theory of infant development

State organization no longer dependent on natural environment (e.g. maternal sleep-wake cycles, maternal hormonal or nutritional cycles) Infant must constantly re-organize all behavioral subsystems based on interaction with new artificial environment

Behavioral subsystems

Autonomic Motor State Attentional / interactive Self-regulatory

Behavioral Subsystems Autonomic

Respiratory patterns (↑RR or distress with stress) Heartr ate changes Color fluctuations (mottling, cyanosis, pallor with stress) GI signs (spitting, residuals, gagging, hiccoughing) Tremors, startles

Motor Facial expressions Truncal tone (↑ or ↓ ) arching or giving up Fingers splayed or fist clenched = stress Frequent squirming, extension of extremities = stress

All of our technological interventions focus on this one system

Behavioral Subsystems State

Deep sleeping Light sleep Drowsy Quiet alert Active awake and aroused Upset and crying

Attentional / Interactive

Approach vs avoidance Yawning / hands up Extension of extremities Increased arousal /agitation

Behavioral Subsystems Self-regulatory

Bringing hands to midline / mouth Peri-oral interest – pacifier Flexion of extremity Grasping

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Behavioral Subsystems

Subsystems are interactive Functional state of one system influences the others Stability and efficient functioning of one system leads to more positive functioning of other systems Smooth transition from state to state reflects organization and CNS control NIDCAP uses subsystems to assess infant’s care plan

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Clinical Implications Environment

Lighting Sound

Care-giving Clustering of care Fewer interventions Infant positioning Supportive behaviors

Family-centered focus

Kangaroo care Encourage visitation Empower parents

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Environment Lighting in the NICU

Stress of bright lights Physiologic signs of stress documented Decreased quiet sleep Pupils unable to constrict completely until 28 weeks Humane thing

ROP risk Animal evidence of ROP with

prolonged, bright light No evidence in humans

Environment Lighting in the NICU

Circadian rhythms are endogenous to humans, even preterm infants

Average circadian time period in humans = 24.2 hours Solar day is most common external factor

Strongest factor = light/dark cycle Lesser factors = exercise, meal times, social activities

In utero: infant is exposed to maternal biorhythms Circadian rhythm of fetal heart rate synchronized with maternal rest-activity, heart rate, cortisol, melatonin, and body temperature rhythms is present during the last 10 weeks of gestation.

Mirmiran et al 2000

Environment

Physiologic systems related to biorhythms HR, body temperature, sleep/wake cycles, hormonal secretion (cortisol, ACTH, melatonin)

Light/dark differential → retina → suprachiasmatic nucleus → rhythm Cycled lighting >32 weeks → ↑wt. gain, ↑quiet sleep, ↓ nighttime activity

Keep ambient lighting ~20 ftc (dim) Support areas (e.g. charting, formula prep) away from baby’s bedside have higher lighting

New Standards for NICU Design Use spotlights for procedure lighting (instead of overhead lighting) If spotlights and phototherapy over face → shield eyes No direct line of vision with light source (cover top of incubator) No direct sunlight in baby’s face (shades over windows) Decrease ambient lighting level for a defined time period (? 12 hours) each day

Lighting

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Stress of loud sounds Physiologic evidence

↑ HR, ↑ICP, ↑ hypoxic events

Humane thing Effect on sleep ↓ quiet sleep = REM sleep Neurodevelopment: best in quiet sleep

Damage to hair cells Hair cell function Loud noise (>90 dB) Sensorineural hearing loss

Sound in the NICU

Sound in the NICU New Standards for NICU Design (2006)

Keep baseline <50 dB Keep transient <65 dB

AAP Baseline >45 dB “should be avoided”

OSHA Hearing damage >80 dB in adults Hearing needs to be monitored for repeated exposure >85 dB

Levels of hearing damage in newborns are unknown.

Environment

Sound in the NICU Sources of sounds in NICU

Background institutional noise Staff generated noise (voices, radio) Closing portholes, cabinets, drawers, tossing garbage Machines: ventilators, copy machines, printers Telephones Refrigerators PA systems Monitors, oximeters

Environment Sound in the NICU

Reality Average NICU baseline = 60-90 dB Continuous background noise of hospital = 45 dB Incubator noise = 40 dB Incubator decreases environmental noise by 20 dB

Environment

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Sound in the NICU (cont’d)

Noise Average (dB) Peak (dB)

Closing an incubator porthole 80 111

Tapping incubator with fingers 70 95

Bumping incub. with metal wastebasket 62 85

Incubator alarm 67

IV pump alarm 56 76

Radio 62

Talking 60

Environment Sound in the NICU

Ways to decrease sound Education / awareness Sound meters in unit No PA system in nursery No telephones near babies No travel paths / workstations / faucets near babies Acoustic ceiling tiles Sound thermal glass Sound absorbing flooring (carpet best)

Best acoustic protection for infants: •well-designed incubator

•conscientious staff

Environment

Care-Giving Scope of problem

Infants disturbed >200 times in 24-hr period Care-giving associated with 75% of all hypoxemic episodes

Clustered care Can vital signs be coordinated with feeds? Can blood draw / x-ray wait until ‘intervention’ time? Can exam wait until later? Can physicians do exam together? Do more noxious event last

Fewer interventions Do you need blood draws as often? Can you decrease labs? Is daily weight necessary?

Pain assessment Anticipate pain with procedures Pre-terms can have increased pain response

Hypersensitivity Allodynia

Pacifier / sucrose 2 mins before and after every procedure Breastfeeding / kangaroo care More complex pain control for more painful procedures

Care-Giving

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Infant positioning Prone / supine Neuromuscular development

Shortening of muscles / abnormal function Decreased joint mobility Decreased muscle strength

Self-regulating behaviors Hands toward face Flexion of extremities Support for feet ‘flexion and containment’

‘Facilitative tuck’

Care-Giving Importance of Positioning Abnormal Positioning leads to:

Development of postural and skeletal deformities of the skull and spine and preferential gaze Fine motor delays due to shoulder girdle tightness as a consequence of keeping arms in “W” position Developmental delay of visual skills and functional preference for the right hand, inability to perform midline tasks or poor self-regulation Gross motor delays including lower extremity tightness at hips, knees and ankles.

Leg positioning in “frogged” or “M” position Influence on rolling, sitting, walking, crawling

Boere-Boonekamp et al 1997, Davis et al 1993, Fay 1988, Hunter 2004, Sweeny et al 2002

Importance of Positioning Good positioning promotes:

Postural and structural alignment Self-regulation by encouraging hand-to-mouth activity

Less crying, conservation of calories for growth Development of neuronal pathways and CNS organization Decreased stress and agitation Development of fine motor skills and shoulder girdle strength Development of gross motor skills

Hunter 2004, Penn 1999, Sweeny 2002

Unsupported……...

Flexed & contained….

This one needs help….

This one’s trying….

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Supportive behavior Non-nutritive sucking

Suck = 12 wks; swallow = 26-28 wks; coordinated = 33-34 wks Provide pacifier with NG feeds

↓ defensive behaviors during tube feeding ↓ time in fussy and active states w/tube feeds ↓ latency to sleep

Cochrane review (2005) Easier transition to full enteral feeds Easier transition to bottle feeds ↓ LOS No change in weight gain No negative outcomes

Care-Giving Family Centered Care

Kangaroo care Skin-to-skin contact between infant and parent Chest-to-chest Upright prone position Parent becomes thermal source

History Beginnings unknown Pre-supplemental heat source / radiant warmer

Modern concept 1983: Bogota, Columbia WHO interest → developing countries Research focus

Safety Efficiency at temp control

1987 - Introduced in U.S. Susan M. Ludington, CNM, PhD Kangaroo Care Research – Case Western Reserve

Kangaroo Care Process

Nurse moves baby and arranges tubes/connections, etc. Level of acuity: determined by nurse and parent Parent holds baby skin-to-skin

Diaper on Cover over baby Hat on small babies

Prolonged period (minimum 1 hour)

Kangaroo Care

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Kangaroo Care Parent gently rub infant’s back, lightly rock, massaging, talking with infant, watch infant very closely Minimal interruption by nursing staff Infant remains monitored In our units, Kangaroo Care is an expectation for stable infants. It has been added to our admission orders.

Kangaroo Care Maternal – infant bonding

Family climate Parents more prone to sensitive caregiving ↑ positive perception of baby ↑ state of readiness to detect and respond to infant’s cues Stressful situations: mothers more competent

↑ breastfeeding at discharge Increased breastfeeding rates at discharge Mother exposed to NICU pathogens via KC → antibodies Mothers produce larger volumes of milk/longer period of lactation with KC

Physiologic effects Less periodic breathing Decreased stress markers

HR, BP, pulse oximetry, crying

Better temperature control 11 studies: infant warming to slightly greater than baseline temp 4 published studies: infant warming to baseline temp 1 study: infant cooled but still within neutral thermal range

Increased daily weight gain More quiet sleep Oxygen requirement stable or decreased Decreased umber & severity of infections (inconsistent in studies)

Kangaroo Care Family Centered Care

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Twins/multiples in same incubator or crib Co-mattressing = separate blanket, same crib

Keeps them from being separated

Co-bedding = same blanket, same crib

Promote similar biorhythm Aid each other with warmth

Family Centered Care Visitation

Goal: encourage parental care of infant Encourage support circle to visit Allow as open visitation as possible Visitors don’t increase infection rates Prevent NICU parenting disorder

Abandonment Neglect Psychological disconnect

Family Centered Care

Empower parents Allow them to do much of infant’s care Never tell parents not to interact with infant Personalize infant’s space Advantages:

Improved satisfaction with care Decrease parental stress Increase parental comfort & competence with post D/C care Decrease readmissions post D/C Increase in success with breastfeeding Decrease LOS Increase staff satisfaction

Family Centered Care

1979: Dr. Adick Levin NICU established at Tallinn Children’s Hospital, Tallinn, Estonia 35 beds (infants <37 weeks) Nursing shortage → mothers called on to provide care

Stayed with infant until discharge Moms taught to care for babies 24/7 care by mothers w/assistance Nurses gave meds Nurses consulted with moms re: BF

Family Centered Care

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Dominant features 24/7 care by mothers Minimize exposure to infection (↓ contact between baby & staff) Promoting breastfeeding Using technology as little as possible ‘hands off’ approach

Results ↓ infections in infants ↓ needs for antibiotics ↓ need for IVF ↑ breastfeeding rates faster weight gain family social & psychological development improved Mothers recovered from childbirth faster ↑ maternal confidence in caring for infant mother-infant attachment enhanced

Tallinn Children’s Hospital

Experience repeated with similar benefits:

Baragwaneth, South Africa Addis Ababa, Ethiopia Buenos Aires, Argentina Santiago, Chile Highwycombe, UK

Family Centered Care

1993: Pediatrics Helen Harrison (The Premature Baby Book) and Dr. Jerold Lucey Conference: 10 sets of parents of NICU babies Well-educated, in healthcare field Burlington, VT “Principles for Family-Centered Neonatal Care”

Family Centered Care “Principles for Family-Centered Neonatal Care”

Based on open and honest communication between parents and providers on medical and ethical issues

Information often vague, euphemisms used, half-truths, shielded from uncertainties or controversies

To make informed decisions, parents must have the same facts and interpretation of those facts as the professionals

Parents should know if little evidence to support therapy; if treatment is not used in most NICU’s; provide literature to support non-standard therapies; participate in risk vs. benefit discussions

In situations with high morbidity or mortality, great suffering or significant medical controversy: fully informed parents should have right to make decisions regarding aggressive therapy for their infant.

Parents should be part of discussions in situations in which benefits of therapy are less than 60%.

Family Centered Care

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Expectant parents should be told about adverse outcomes and allowed to state in advance their treatment preferences if baby is born critically ill or extremely prematurely.

+/- resuscitation

Parents and professionals must work together to acknowledge and alleviate the pain experienced by infants in the NICU.

Some physicians still don’t acknowledge pain in neonates; parents see pain as a moral and medical issue; discussions of pain management should include parents

Parents and professionals must work together to ensure an appropriate environment for babies in the NICU.

The prudent and humane course is to protect babies as fully as possible from unnecessary light, noise, handling, uncomfortable positioning and sleep disruptions.

Family Centered Care Parents and professionals should work together to ensure the safety and efficacy of neonatal treatments.

Treatments offered to babies should be used in the context of properly controlled trials; old therapies not tested for safety and efficacy should have controlled trials.

Parents and professionals should work together to develop nursery policies and programs that promote parenting skills and encourage maximum involvement of families with their hospitalized infant.

Parent support groups helpful, network with other ‘veteran’ parents; allow liberal visitation for relatives, siblings and family friends; NICU staff should encourage parents to assume nonmedical aspects of care and encourage ‘rooming in’ before D/C

Family Centered Care

Family Centered Care

Parents and professionals must work together to promote meaningful long-term follow-up for all high-risk NICU survivors.

All centers must provide follow-up services (some don’t); must continue to provide services >3 y.o.; better consistency of documentation/services so that meaningful data can be obtained to improve care

Parents and professionals must acknowledge that critically ill newborns can be harmed by over-treatment as well as by under-treatment; our laws and treatment policies must be based on compassion.

Reject the notion that our infants are well-served by laws mandating life-sustaining treatment without regard to pain and quality of life; insist on rights and responsibility to ‘say no’ on behalf of their infant to burdensome, painful and unproven therapies

Info sharing Collaboration

between caregivers &

families

Culture

Facility Design

Programs

Policies

Family Centered Care

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Supporting Research Infants in NIDCAP had shorter stays on respirators, supplemental oxygen and feeding tubes (Becker 1991, Als 1994) NIDCAP babies started oral feeding sooner and had better average daily weight gain, shorter hospital stays and improved overall behavioral functioning (Fleisher 1995, Als 1994) NIDCAP babies showed reduced need for tube feeding, positive airway pressure and LOS (Fleisher 1995) Hospital costs were lower for NIDCAP babies (Fleisher 1995) VLBW NIDCAP participants have shorter duration of intravenous nutrition, shorter time to full oral feeds, shorter duration of intensive care and LOS, lower incidence of NEC, lower age at discharge, lower hospital charges, improved weight, length and head circumference (Als 2003)

Supporting Research

No difference in pain profile during eye exams but behavior scores were better in the NIDCAP group (Kleberg 2008) No difference in neurologic outcomes, mental or psychomotor outcomes at 1 or 2 years of age (Maguire 2009) Significant improvement in both short and long-term outcomes (Peters 2009) No difference in health related quality of life reported by parents (van der Pal 2008) NIDCAP babies had a significantly lower incidence of developmental delay and scored significantly higher than the control group on mean mental and physical indexes at 12 and 24 months corrected age (Resnick 1987).

Supporting Research

NIDCAP infants had improved behavioral organization at 2 weeks and 9 months corrected age (Becker 1991) NIDCAP infants have enhanced autonomic, motor, state, attention, and self-regulatory functioning following the intervention compared with the control group (Als 2003) Preterm NIDCAP infants had better outcomes than non-NIDCAP infants in terms of behavioral performance and in the amount of activity found in the frontal lobe of the brain (Beuhler 1995) 8-year follow up found better right hemisphere and frontal lobe function in NIDCAP group (McAnulty 2009).

Supporting Research NIDCAP studies – Als 1986, 1994, 2003, 2004

Variable Control (n=51)

Experiment (n=56)

P value

Daily weight gain 20 23 0.007

Vent. days 48 27 0.005

Oxygen days 106 60 0.02

Gavage days 87 55 0.03

Hospital days 128 84 0.007

Discharge age 44 39 0.005

IVH: 0 / 1 / 2 / 3 / 4 29, 8, 6, 3, 5 46, 2, 2, 6, 0 0.001

BPD: 0 / I / II / III / IV 8, 11, 12, 17, 3 9,17,24,5,1 0.01

Pneumothorax 37 46 0.31

ROP: 0 / I-II / III / IV-V 26, 23, 1, 1 31, 24, 1, 0 0.75

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NIDCAP studies – Als 2004 (cont’d) Bayley Scales of Infant Development, 9 months C.A.

Variable Control (n=42)

Experiment (n=50)

P - value

MDI 96.55 (21.42) 116.24 (18.22) 0.00001

PDI 84.29 (19.24) 99.18 (17.30) 0.0002

Supporting Research Dr. Westrup: Karolinska Institute, Stockholm (2000)

First RCT outside of US NIDCAP vs conventional care

Separate rooms (NIDCAP vs conventional) Weekly NIDCAP assessments

<32 weeks, on ventilator at 24 hours Mean birth weights: 840 g (C) vs 1083 (E) Primary endpoints

Need for ventilatory assistance Growth parameters Hospitalization

Early termination Nurses felt discomfort & disloyalty to controls (ethical pressures) Spillover of staff when staffing was ‘tight’

Supporting Research

Westrup: Karolinska Inst., Stockholm (2000)

Variable Control (n=13)

Experiment (n=12)

P value

Days on CPAP 44.1 27.0 0.045

Age at O2 withdrawal 38.1 32.9 0.007

Days mech vent. 4.8 2.8 NSS

Mean OFC (cm/wk) 0.63 0.80 NSS

Weight gain (gm/d) 9.8 13.0 NSS

BPD: none, mild, mod, sev (at 36 wks) 5, 2, 4, 2 All needed O2

6, 6, 0, 0 None needed O2

N/A

Discharge age 41.0 38.3 NSS

Supporting Research Cochrane Review -- 2006

36 eligible RCT Problems with analysis per Cochrane

19 major interventions studied No two studies measured identical interventions Variable sample sizes – most small Some NIDCAP nurses, some not Difficult to compare severity of illness between subjects Impossible to blind to caregivers Some did not blind to assessors of data Contamination of controls with DC practices Old studies (back to 1980) Some missing data unable to obtain for meta-analysis Few trials were evaluated for each specific intervention

Supporting Research

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Inconsistent Results ↓ LOS Physiologic stability: ↓HR, ↓RR ↓ days to full oral feeds

OFC gain ↓ days on mech. ventilation Improved daily weight gain ↓ age at oxygen withdrawal ↓ days on CPAP ↓ hospital charges Improved NB outcomes

2 weeks, 9 months, 12 months

Statistically significant findings

quiet sleep ↓ BPD (moderate/severe) ↓ NEC ↓ family stress

family perception of child

behavior & motor skills at 5 y.o.

Cochrane Review 2006

Cochrane Review (2006) conclusions:

Evidence of limited benefits of developmental care No major harmful effects Interventions demonstrate promising results Interventions should be studied further in more consistent RCT

Supporting Research

Implementation Commitment from all staff to change philosophy of care

Nurses & physicians ‘all about me’ → ‘all about baby’ Give up control → give some to families

Commitment from hospital / nursing administration

Training of all NICU staff On-going education of new nursing hires Allow nursing judgment and flexibility (e.g. alter VS times)

Implementation Trained specialists on staff

NIDCAP certified staff OT / PT

NICU design Family space Comfortable furniture Environmental issues

Light Sound

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NIDCAP Certification The nursery applicant reviews the NIDCAP Nursery Certification Program: A Guide to Preparation, Application and Implementation of NIDCAP Nursery Certification in order to determine if the nursery is eligible for NIDCAP Nursery Certification; If eligible, the nursery applicant submits the NNCP Application: Part I and all supporting evidence; Should the NNCP Application: Part I be approved by the NNCP Director, the nursery applicant is then invited to submit the NNCP Application: Part II, Nursery Self-Assessment Questionnaire, the scored NIDCAP Nursery Certification Criterion Scales (NNCCS) as well as the completed NNCCS: Provision of Evidence; Once the NNCP Application: Part II is reviewed and approved by the designated NNCP Site Review Team, the NNCP Director, in collaboration with the nursery applicant and the Review Team, develops the NNCP Site Review Schedule. This schedule addresses the dates and times that particular activities (e.g., observations, interviews, chart reviews, etc.) will be conducted, and specifies the logistics for the site visit (see Preparation for the NNCP Site Review); NNCP Site Review: The nursery applicant is evaluated by three NNCP Site Reviewers, during a two- to three-day Site Visit, depending on the nursery’s size and complexity. This is followed by a one-day off-site, yet on-location, Site Review Team integration day to review the results of the site assessment; and Following the integration of the Review Process the NNCP Site Review Team develops an NNCP Summary Report and Recommendations that are shared with the NNCP Steering Committee and subsequently forwarded by the NNCP Director to the NFI Board of Directors. The NFI Board decides on the ultimate disposition of the application. Upon such disposition the nursery applicant receives the Review Team’s Summary Report and the NFI Board’s decision as to the results of the nursery’s application’s disposition.

From www.nidcap.org

NIDCAP Cost

NNCP Application: Part I................................USD 1,500.00 NNCP Application: Part II...............................USD 9,000.00 NNCP Site Review Visit..................................USD 18,720.00* Total:......................................................USD 29,220.00

*Based on a three-day Site Visit. Does not include costs of renovations or upgrades. Process takes at least one year,

16 months is common, 2 years is not rare.

From www.nidcap.org

All NICU care is brain care.Heidelise Als, PhD, Department of Psychiatry, Harvard Medical School, Children’s Hospital, Boston, 2006

www.nidcap.orgFor info about the organization, the program, conferences, certification and training.

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