Acta Pædiatrica ISSN 0803–5253

A DIFFERENT VIEW

Individualized developmental care improves the lives of infants bornpretermSamantha Butler (samantha.butler@childrens.harvard.edu), Heidelise AlsNeurobehavioral Infant and Child Studies, Children’s Hospital Boston, Harvard Medical School, Boston, MA, USA

CorrespondenceSamantha Butler, Children’s Hospital Boston andHarvard Medical School - Neurobehavioral Studies,Enders Research Building, Room 107, 320Longwood Ave, Boston, MA 02115 USA.Tel: +1-617-3558249 |Fax: +1-617-300224 |Email: samantha.butler@childrens.harvard.edu

Received21 May 2008; accepted 26 May 2008.

DOI:10.1111/j.1651-2227.2008.00916.x

Preterm birth is a global obstetrical, medical and educationalchallenge. Compared to children born at term, children bornprematurely are more likely to suffer from delays and dis-abilities in development. At one time, it was believed that inthe absence of major medical complications, children bornprematurely would ‘catch up’. However, as preterm-bornchildren grow up, academic, as well as life challenges in-crease in complexity. Now it is clear that these are accom-panied by a widening of the gap with their full-term peerson many measures of brain development, cognition, edu-cational achievement and behaviour (including social andemotional adaptation) (1–8).

Preterm-born children are the most overrepresentedgroup among children requiring early intervention and oncein school, special education services (9). Their long-termdisabilities, especially in terms of cognition, motor systemdysfunction, learning and school achievement (4,7,8,10) arethought to be based on differences in early brain develop-ment(1,2,5,6). The plethora of research on later difficultiessustained by preterm-born children suggests that it is notenough to assure the survival of such infants, but that thequestions must be asked: How can these disabilities and im-pairments of brain development be minimized? How canwe maximize the development of all preterm-born infants?

While some developmental differences and challengesseen in children born early are explained by the cumula-tive effect of medical complications associated with pretermbirth many sequelae of prematurity are not easily explainedby medical complications alone (11). In what other way,besides minimizing these medical complications, can devel-opmental dysfunction be reduced?

Articles published in the series A Different View are edited by AlanLeviton (alan.leviton@childrens.harvard.edu)

The infants at highest risk of medical complications anddevelopmental dysfunctions are born late in the second orearly in the third trimester, when brain development is es-pecially rapid and exquisitively sensitive to environmentalstimuli that appear to influence the brain’s developmentaltrajectory. Some of these stimuli amount to sensory overload(12–16). For example, the premature infant is unexpectedlyexposed to stimuli not experienced as a fetus in utero, includ-ing bright lights, high sound levels and frequent stressful andoften painful interventions, all in the face of significantly di-minished positive experience. While the newborn intensivecare unit (NICU) is necessary for the assurance of prema-ture infants’ survival, the excessive and unexpected environ-mental and care-procedure-related stimulation is potentiallydetrimental to the fragile immature brain’s organization anddevelopment.

The Newborn Individualized Developmental Care andAssessment Program (NIDCAP) is an intervention that at-tempts to minimize the mismatch between the immaturebrain’s expectations and the experiences of stress and paininherent in NICU environments and care procedures (17).NIDCAP improves outcome not only medically, but alsobehaviourally, as well as in brain function and structure(12,13,15,16,18–21).

The therapeutic method of individualized developmen-tal care begins immediately after birth and provides earlysupport and preventive intervention based on each infant’sbehavioural signals of stress, comfort and strengths. At alltimes, NIDCAP takes into account the infants’ sensory ex-perience threshold from functional modulation to disorga-nization, while attempting to provide specific sensory inputsand experiences that enhance the infant’s current sense ofwell-being and perhaps brain growth and development. Theindividualized adaptation and planning of care is basedon careful, detailed, repeated observation of the infant’s

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behavioural cues and communications while medically nec-essary care procedures are performed. NIDCAP recognizesparents as the only continuous, stable, familiar, and there-fore predictable anchor for each infant’s development in theNICU. Consequently, NIDCAP supports parents and familymembers as an infant’s primary caregivers, even when theinfant is in the NICU.

A NICU that provides individualized, developmentallysupportive and family-centred care, is one in which the lightsare turned down and the sound level is low. Each infant’sbed or incubator is covered with a blanket, often provided bythe family and sometimes an obvious work of art and love.The parents are assured that they are the infant’s primarynurturers, and that all will be done to support them in thatrole. Space is provided for the infant’s family at the bedside,including recliner chairs and sleeping accommodations. Allcare is provided with an understanding of neurodevelop-mental expectations, which include continual adjustment ofcare in support of the infant’s well-being, strengths, senseof competence and effectiveness. These efforts to maximizelong-term well-being, as well as survival of the infant, pro-vide a subdued environment, which is soothing to all, en-courages infant sleep and relaxation and encourages parentsto spend long periods of time with their infant or live-in withtheir infant on a 24-h basis. Perhaps more important thaneven the most extensive adaptations of the physical envi-ronment in a NIDCAP nursery are the contributions of thespecially educated, NIDCAP trained and thus emotionallywell-supported and emotionally available staff. All of theseprofessionals work together to promote parent nurturing,respect and collaboration, and thereby reduce the infant’sand the parents’ stress (11,22–24).

Introduction of individualized developmental care in-volves investment by the hospital system not only in edu-cation and physical changes, but also in transformation ofpractice and relationships at many levels of the organiza-tion. Shifting care from a task and discipline orientation toa relationship-based orientation is challenging. It requiresthe staff to increase self-awareness and sensitivity to meetsimultaneously the expectations and hopes of the infant andfamily as well as the professional peer and supervisor. De-velopmental care requires a transformation of the NICUprofessionals’ role definition from doer and administratorto facilitator and nurturer of growth and development whilecontinuing to increase skills to maximize survival and min-imize morbidity. This requires, in turn, the availability ofcontinued education and of regularly available opportunitiesfor reflective processing, and for personal and professionaldevelopment.

NIDCAP, with its provision of 24-h continuous individu-alized support from admission to the NICU to at least term-equivalent age, appears to improve medical, behavioural,electrophysiological and neurostructural outcomes of bothhigh- and low-risk early-born preterm infants when studiedat term age and into childhood (12,13,15,16,18–21). NID-CAP also appears to improve parent competence and func-tioning (18,20).

Given these encouraging findings, preterm infants andtheir families’ benefit when those responsible for NICU careare knowledgeable and well educated in early brain devel-opment and can provide opportunities for individualized de-velopmental care. Despite the increasing availability of NID-CAP training and systems consultation (25), developmentalcare still is not practiced consistently. Many NICU profes-sionals continue to be uninformed or misinformed and oth-ers encounter significant systems, financial and emotionalbarriers. Yet, an increasing number of NICUs in the UnitedStates understand the importance of individualized develop-mental care and provide at least partial support for nursesand other disciplines to engage in selected aspects of theNIDCAP model. Few still implement the practice in its fullpotential because of limited resources for their staff and pa-tients. Those responsible for NICU staff development andtraining must be informed and encouraged to learn aboutNIDCAP training and support. The highly dependent, sensi-tive, and rapidly developing preterm infants and their hope-ful and vulnerable parents have little choice but to fully trustNICU staff. The professionals and the NICU systems mustlive up to and warrant this trust.

The urgency for training in individualized, developmen-tally supportive and family-centred care is heightened bythe increased rate of prematurity and the alarming rate ofdisability among children born preterm. Providing NIDCAPtraining and support promises to result in improved devel-opmental outcomes and more satisfying futures for the manyinfants born too early and for their families.

References

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2. Duffy FH, Als H, McAnulty GB. Infant EEG spectralcoherence data during quiet sleep: unrestricted principalcomponents analysis - relation of factors to gestational age,medical risk, and neurobehavioral status. Clin Electroenceph2003; 34: 54–69.

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8. Wolke D, Samara M, Bracewell M, Marlow N, EPICure StudyGroup. Specific language difficulties and school achievementin children born at 25 weeks of gestation or less. J Pediatr2008; 152: 256–62.

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23. Kleberg A, Hellstrom-Westas L, Widstrom A-M. Mothers’perception of Newborn Individualized Developmental Careand Assessment Program (NIDCAP) as compared toconventional care. Early Hum Dev 2007; 83: 403–11.

24. Wielenga JM, Smit BJ, Unk LKA. How satisfied are parentssupported by nurses with the NIDCAP model of care fortheir preterm infant? Newborn Individualized DevelopmentalCare and Assessment Program. J Nurs Care Qual 2006; 21:41–8.

25. NIDCAP Federation International. The newbornindividualized developmental care and assessment programtraining process, 2008. URL. http://www.nidcap.org.

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