Family-Centered and Developmental Care in the Neonatal Intensive Care Unit


  • 1.

    What is patient-and family-centered care?

Patient- and family-centered care is an approach to planning, delivery, and evaluation of health care that supports partnerships among patients, families, and health care practitioners. It is founded on the principle that the family plays a vital role in ensuring the health and well-being of the infant. Family-centered care provides care to families in a manner that involves respect and empowerment and responds to individual diversity and strengths.

Ahmann E, Abraham MR, Johnson BH. Changing the concept of families as visitors: supporting family presence and participation. Advances: Institute for Family-Centered Care 2002;8:2–15.

  • 2.

    What are the four guiding principles of patient-and family-centered care?

According to the American Hospital Association and Institute for Family Centered Care 2005, the principles are as follows: ( Table 4-1 )

TABLE 4-1
FOUR GUIDING PRINCIPLES OF PATIENT AND FAMILY-CENTERED CARE
American Hospital Association, Institute for Family-Centered Care: Strategies for leadership: patient- and family-centered care: a resource guide for hospital senior leaders, medical staff and governing boards. Bethesda, MD; 2004. p. 2. Available at http://www.aha.org/aha/key_issues/patient_safety/resources/patientcenteredcare.html
1. Dignity and respect Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs, and cultural backgrounds are included in the planning and delivery of health care.
2. Information sharing Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information to effectively participate in care and decision making.
3. Participation Patients and families are encouraged and supported in participating in care and decision making at the level they choose.
4. Collaboration Patients, families, health care practitioners, and hospital leaders collaborate in policy and program development, implementation and evaluation, health care facility design, and professional education.

  • 3.

    What are the different approaches to health care delivery?

    • System centered: The needs of the system drive the delivery of care.

    • Patient centered: Staff focus on the needs of the infant but do not see the infant within the context of the family.

    • Family focused: The family is the focus or unit of care. Interventions are done to and for them instead of with the patient.

    • Patient-and family-centered: The priorities and choices of the patient and family are respected. This is a collaborative approach to decision making.

      Adapted from Hospitals Moving Forward with Patient- and Family-Centered Care Seminar. Capabilities statement. Bethesda, MD: Institute of Family-Centered Care; 2005. p. 50.

  • 4.

    Why is it important to form a partnership in care with a family?

    BOX 4-1
    REASONS TO ENGAGE FAMILIES AS ESSENTIAL PARTNERS IN CARE
    Hospitals Moving Forward with Patient- and Family-Centered Care Seminar. Bethesda, MD: Institute of Family-Centered Care; 2004. p. 50.

    • 1.

      To foster the parents’ confidence as the role of “expert” in relation to their infant

    • 2.

      To support parent–infant attachment and bonding

    • 3.

      To help stabilize and strengthen the family unit

    • 4.

      To equip parents with the necessary skills to be their child’s advocate once they leave the neonatal intensive care unit (NICU)

    • 5.

      To provide the best opportunity for developmentally sound infant and family outcomes, which will yield immeasurable dividends

    See Box 4-1 .

  • 5.

    Why is patient- and family-centered care a necessary component of care in the neonatal intensive care unit (NICU)?

    See Table 4-2 .

    TABLE 4-2
    ADVANTAGES OF PATIENT- AND FAMILY-CENTERED CARE
    • Johnson BH, Hanson JL, Jeppson ES. Family-centered care: changing practice, changing attitudes. Newborn intensive care: resources for family-centered practice. Bethesda, MD: Institute for Family-Centered Care; 1997. p. 117.

    • Cisneros KA, Coher K, Dubuisson AB, et al. Implementing potentially better practices for improving family-centered care in neonatal intensive care units: success and challenges. Pediatrics 2003;111:450-60.

    Infant and parental advantages
    • Parent–provider communication and parent satisfaction with care are improved.

    • Improves and enhances outcomes for infants by providing appropriate support for families.

    • Increases family members’ ability to cope with the challenges of caring for their hospitalized premature and critically ill infants.

    • Parent–infant attachment is increased.

    • Breastfeeding is enhanced.

    • It leads to increased parental confidence.

    Provider advantages Medical professionals’ satisfaction with their work is increased.
    Institutional advantages There are better health outcomes, hospital economic savings, patient satisfaction with care, and fewer readmissions.

  • 6.

    What should a patient- and family-centered NICU acknowledge?

    BOX 4-2
    A FAMILY CENTERED CARE NICU ACKNOWLEDGES THAT:
    • Saunders RP, Abraham MR, Crosby MJ, et al. Evaluation and development of potentially better practices for improving family-centered care in neonatal intensive care units. Pediatrics 2003;111:e437–e449.

    • Johnson AN. Engaging fathers in the NICU: taking down the barriers to the baby. J Perinat Neonatal Nurs 2008;22:302–06.

    • Over time, the family has the greatest influence on an infant’s health and well-being.

    • All families bring important strengths to their infant’s health care experiences

    • It is important to respond to the individual cultural and linguistic needs of the family

    • It is important to nurture the strong bonds that begin between infants and their families at birth and to support those relationships throughout the intensive care experience.

    • Innovative facility design and patient- and family-centered environments should be available.

    See Box 4-2 .

KEY POINTS: FAMILY-CENTERED CARE IN THE NICU

  • 1.

    Integrates families in the care process

  • 2.

    Is respectful of family values

  • 3.

    Supports families’ unique differences and diversity

  • 4.

    Improves parent–infant attachment

  • 5.

    Enhances breastfeeding

  • 6.

    Improves parent satisfaction

  • 7.

    Improves parent–provider communication

  • 8.

    Improves parents’ confidence in the care of their infant

  • 7.

    How are NICU s changing their approach to health care delivery ?

    BOX 4-3
    PATIENT- AND FAMILY-CENTERED APPROACHES IN THE NICU
    • American Academy of Pediatrics Committee on Hosptial Care Policy Statement. Pediatrics 2003;112:691–96.

    • Sudia-Robinson TM, Freeman SB. Communication patterns and decision-making among parents and health care providers in the neonatal intensive care unit: a case study. Heart Lung 2000;29:143–48.

    • Van Ripper M. Family provider relationships and well-being in families with preterm infants in the NICU. Heart Lung 2001;30:74–84.

    • Griffin T. Family-centered care in the NICU. J Perinat Neonatal Nurs 2006;20:98–102.

    • Parents are viewed as partners in care.

    • Parents are active participants in medical rounds.

    • Families are no longer seen as visitors, and there is 24-hour participation in care.

    • Parents and families participate in hospital/NICU advisory boards and design committees.

    • Parents are involved in unit quality improvement and reseach.

    • Parents are part of all design and planning teams for new NICU construction and NICU renovations.

    • Parents are provided with opportunities to learn and engage in infant caregiving.

    • Parents are encouraged to provide daily kangaroo care/skin-to-skin care.

    • Parent-to-parent mentor networks offer support for families.

    • Parent information resource centers have been established in the units.

    See Box 4-3 .

  • 8.

    What are the six key steps used to approach families in the NICU to assess their needs in a family-centered care model?

Family assessments in the NICU can be performed in as little as 15 minutes and should be done in a way that supports families and minimizes suffering. The following six key steps can be used as a guideline ( Box 4-4 ) :

BOX 4-4
THE SIX KEYS TO FAMILY ASSESSMENT IN THE NICU
Leahey M, Wright L. Maximizing time, minimizing suffering: the 15-minute (or less) family interview. J Fam Nurs 1999;5:259–74.

  • Introduce yourself to all family members.

  • Ask about people at the bedside to determine their relationship to the infant, and identify who can receive information other than the parents.

  • Know the gender of the infant and, especially, learn the infant’s name.

  • Stop by frequently to update the parents with changes or other information.

  • After any explanation, always ask if there are questions.

  • If you do not know an answer, say so and then find out the answer. Do not attempt to “bluff” when you do not know.

  • 9.

    What should be included in a patient-and family-centered neonatal practice ?

    BOX 4-5
    EXPECTATIONS OF PATIENT- AND FAMILY-CENTERED NEONATAL PRACTICE
    • Lawon G. Facilitation of parenting the premature infant within the newborn intensive care unit. J Perinat Neonatal Nurs 2002;16:71–82.

    • White RD. Mother’s arms—the past and future locus of neonatal care? Clin Perinatol. 2004;Jun 31:83–87.

    • Privacy is provided for parents at the bedside that is personalized for the infant.

    • Health care providers refer to infants and their family members by their names, not with “mommy,” “daddy,” or “the baby.” Such terms are demeaning and disingenuous.

    • Information is shared in ways that are useful and affirming of the parents’ role.

    • Parents, siblings, and families are not visitors and should be encouraged to be with their infants. There is 24-hour access to the NICU.

    • Cultural diversity is respected, and family preferences are honored.

    • Parents are active participants in medical/nursing rounds by asking questions of and responding to medical providers and are partners in decision making about their infant’s care.

    • Primary nursing is available. Consistent caregiving is provided.

    • Early holding and “kangaroo care” is part of care.

    • Infant colostrum care and mother’s successful breast milk pumping and feeding is supported through the infant’s hospitalization and transistion to home.

    • Parents participate in pain care by providing comfort before, during, and after painful procedures.

    See Box 4-5 .

Infant Developmental Care in the NICU

  • 10.

    What is developmental care?

Developmental care is a method of care that acknowledges that the developing fetus and infant can react favorably or unfavorably to environmental influences. Developmental care is a process that assesses each infant’s individual developmental needs and responds to those needs to optimize neurodevelopmental outcome.

Als H. Reading the premature infant. In: Goldson E, editor. Developmental interventions in the neonatal intensive care nursery. New York: Oxford University Press; 1999. p. 18–85.

  • 11.

    A premature infant is really a fetus. Is a premature infant capable of reacting or responding to the environment?

Absolutely. A premature infant’s neurosensory and musculoskeletal development is primed to react to all exposed environments. In the womb, unlike the NICU, a fetus is sheltered from light, sound, and noxious touch.

Als H, Gilkerson L, Duffy F, et al. A three-center, randomized, controlled trial of individualized developmental care for very low birth weight preterm infants: medical, neurodevelopmental, parenting, and caregiving effects. J Dev Behav Pediatr 2003;24:399–408.

  • 12.

    What is the critical biologic aim of developmental care?

The aim is to reduce stress and improve or preserve neurodevelopmental outcome. Understanding infant vulnerabilities and responses to stress can lead to a systematic method to support the infant’s strengths to alleviate the stress response. Calm infants require less oxygen (and fewer changes in mechanical ventilation), expend less energy, tolerate feeding better, and have a shortened duration of hospitalization.

Symington A, Pinelli J. Developmental care for promoting development and preventing morbidity in preterm infants. Cochrane Database Syst Rev 2003;4:CD001814.

  • 13.

    What are the key components of infant developmental care?

Infant developmental care is care responsive to an individual infant’s developmental needs. The key components are as follows ( Box 4-6 ) :

KEY POINTS: GOALS OF DEVELOPMENTAL CARE IN THE NICU

  • 1.

    To improve respiratory function

  • 2.

    To enhance feeding and promote weight gain

  • 3.

    To support brain and psychological development

  • 4.

    To prevent muscular skeletal deformities

  • 5.

    To shorten length of hospitalization

BOX 4-6
KEY COMPONENTS OF DEVELOPMENTAL CARE
Kenner C, McGrath JM, editors. Developmental care of newborns and infants: a guide for health professionals. St Louis: Mosby; 2004.

  • Management of the environment: Decreasing noise and visual stimulation, providing appropriate bedding

  • Collaboration with parents and promotion of infant–parent bonding

  • Activities that promote self-regulation and state regulation: Nonnutritive sucking, kangaroo care, cobedding of multiples

  • Fixed midline positioning and containment

  • Individualizing care and timing of procedures and care provision to promote deep sleep and brain development

  • 14.

    How is developmental care different from the care that is currently provided in the NICU?

In current care practices the caregiver has a set treatment plan that is performed regardless of the gestational needs or responses of the infant. In the practice of developmental care, the caregiver responds to infant behavior to alter or manage the infant’s environment before, during, and after the treatment depending on an infant’s developmental needs. The caregiver individualizes the treatment process on the basis of the infant’s observed behavior and developmental needs.

Als H, Lawhon G, Brown E, et al. Individualized behavioral and environmental care for the very low birth weight preterm infant at high risk for bronchopulmonary dysplasia: neonatal intensive care unit and developmental outcome. Pediatrics 1986;78:1123–32.

Hendricks-Muñoz KD, Prendergast CC. Barriers to provision of developmental care in the neonatal intensive care unit: neonatal nursing perceptions. Am J Perinatol 2007;24:71–77.

Altimier L, Lutes L. Changing units for changing times: the evolution of a NICU. Neonatal Intens Care 2000;3:23–27.

  • 15.

    How long have we known that the NICU environment can affect infant outcome?

The theory of impact of the environment on infant outcome is not new. As early as 1973, during the “infancy” of neonatal intensive care, environmental effects such as sound, light, and positioning were noted to have a negative impact on infant medical outcomes.

Lotas MJ, Walden M. Individualized developmental care for very low birth-weight infants: a critical review. J Obstet Gynecol Neonat Nurs 1996;25:681–87.

KEY POINTS: COMMON CHARACTERISTICS OF DEVELOPMENTAL CARE

  • 1.

    An environment supportive of the needs of the child

  • 2.

    Caregiving staff and families who identify and respond to the needs of the infant

  • 3.

    Caregiving staff and families who collaborate in care

  • 4.

    Specific supportive techniques, such as kangaroo care, swaddling, and pacifier use to support development

  • 16.

    How is the Newborn Individualized Developmental Care and Assessment Program (NIDCAP) different from other methods of providing developmental care training?

NIDCAP is a model of care that emphasizes the behavioral individuality of each infant. Caregivers receive intensive specialized training in neurobehavioral and environmental infant observations that result in a behavioral profile that can be used in the plan of care. This method seeks to diminish the infant’s stress experience and enhance the infant’s strengths. Wee Care®, another developmental care program, incorporates developmental care training of the entire NICU care team to increase awareness of the importance of the environment and developmental care responses needed to address the needs of high-risk infants.

Als H, Gibes R. Newborn Individualized Developmental Care and Assessment Program (NIDCAP). Training Guide. Boston: Children’s Hospital; 1990.

Kenner C, McGrath JM, editors. Developmental care of newborns and infants: a guide for health professionals. St Louis: Mosby; 2004.

  • 17.

    Does developmental care for critically ill infants improve outcomes?

Yes. Developmental care has been shown to accomplish the following:

  • Facilitate the transition to independent feeding

  • Promote weight gain

  • Shorten hospitalization

  • Reduce hospital charges

  • Improve neurobehavioral outcomes

  • Reduce parental stress and improve parent perception of the infant

In addition, developmental care methods such as containment, facilitated tuck, and kangaroo care have been shown to reduce infant stress and pain.

Hendricks-Muñoz KD, Prendergast C, Caprio MC, et al. Developmental care: the impact of Wee Care developmental care training on short-term infant outcome and hospital costs. Newborn Infant Nurs Rev 2002;2:39–45.

  • 18.

    What neuronal changes occur in the brain of the premature infant in the NICU environment?

Neuronal changes occurring between 23 and 40 weeks’ gestation include the following ( Table 4-3 ) :

Bourgeois JP. Synaptogenesis in the neocortex of the newborn: the ultimate frontier for individuation? In: Lagercrantz H, Hanson M, Evrard P, et al, editors. The newborn brain. Cambridge: Cambridge University Press; 2002. p. 91–113.

Lagercrantz H, Ringstedt T. Organization of the neuronal circuits in the central nervous system during development. Acta Paediatr 2001;90:707–15.

KEY POINTS: ONGOING NEURONAL CHANGES IN THE NICU

  • 1.

    Cell migration and proliferation

  • 2.

    Reorientation and differentiation of cells

  • 3.

    Axonal growth and formation of dendrites

  • 4.

    Myelination, apoptosis, and formation of synapses

TABLE 4-3
NEURONAL CHANGES OCCURRING DURING 23 TO 40 WEEKS’ GESTATION
  • Cell migration

  • Cell differentiation

  • Myelination

  • Reorientation of cells

  • Axonal growth

  • Apoptosis

  • Cell proliferation

  • Formation of dendrites

  • Formation of synapses

  • 19.

    How critical is the environment for brain development?

During this critical period of brain development, sensory and environmental influences can regulate wiring of neuronal networks, which can be permanently altered by early abnormal sensory input. In rats pain experienced during the neonatal period is associated with persistent accentuated stress responses, learning deficits, and behavioral changes. In addition, chronic interference with rapid-eye-movement (REM) sleep has been associated with decreased size of the cerebral cortex. §

Anand KJ, Coskun V, Thrivikraman KV, et al. Long-term behavioral effects of repetitive pain in neonatal rat pups. Physiol Behav 1999;66:627–37.

Anand KJS, Scalzo FM. Can adverse neonatal experiences alter brain development and subsequent behavior? Biol Neonate 2000;77:69–82.

Gressens P, Rogido M, Paindaveine B, et al. The impact of neonatal intensive care practices on the developing brain. Pediatrics 2002;140:646–53.

§ Rabinowicz T, de Courten-Myers GM, Petetot JM, et al. Human cortex development: estimates of neuronal numbers indicate major loss late during gestation. J Neuropathol Exp Neurol 1996;55:320–28.

Ruda MA, Ling QD, Hohmann AG, et al. Altered nociceptive neuronal circuits after neonatal peripheral inflammation. Science 2000;289:628–31.

  • 20.

    What is the order of development of the fetal senses?

The senses develop in the following order:

Touch > balance > taste > smell > hearing > and finally sight.

  • 21.

    What happens when sensory exposure occurs out of sequence?

Animal studies have identified abnormal physiologic and brain development when the senses are stimulated out of order. Quail hatchlings cannot discriminate their mother’s cry if exposed to light before hatching. Recent information suggests that premature human infants may be at risk of executive dysfunction and hearing loss when sensory systems have been stimulated out of order.

Graven SN. Sound and the developing infant in the NICU: conclusions and recommendation for care. J Perinatol 2000;20:S88–93.

Turkewitz G, Kenny PA. The role of developmental limitations of sensory input on sensory/perceptual organization. J Dev Behav Pediatr 1985;6:302–08.

Touch/Tactile System

  • 22.

    When does tactile or touch sensation develop in an infant?

Tactile sensory development occurs by 12 to 14 weeks’ gestation. It is the first sensory system to develop and plays an important role in overall development. By 14 weeks all sensory connections are present in the fetus.

  • 23.

    What are the most sensitive areas of the body in a fetus and premature infant?

The areas that are the most sensitive for the fetus and premature infant are the mouth and extremities, especially the hands and feet.

Kenner C, McGrath JM, editors. Developmental care of newborns and infants: a guide for health professionals. St Louis: Mosby; 2004.

Musculoskeletal System

  • 24.

    What are the physiologic responses to noxious stimuli in premature infants?

Premature infants are very sensitive to what they perceive as noxious touch. When they experience these events, they respond with tachycardia, agitation, hypertension, apnea, a decrease in oxygen saturation, disorganization, and sleep deprivation.

Evans JC. Incidence of hypoxemia associated with caregiving in premature infants. Neonatal Netw 1991;10:17–24.

Liu D, Caldji C, Sharma S, et al. Influence of neonatal rearing conditions on stress-induced adrenocorticotropin responses and norepinephrine release in the hypothalamic paraventricular nucleus. J Neuroendocrinol 2000;12:5–12.

  • 25.

    What is the normal position of an infant in the womb?

In the buoyant conditions of the womb, the infant remains in a flexed, contained, and midline position at all times. The head, back, and feet are contained by the uterine boundaries. This position allows for soothing and self-regulation by touching of the face and sucking on fingers.

  • 26.

    How does the loss of the uterine environment affect muscular development in an infant?

Muscular development in the womb is critically dependent on the buoyancy and contained uterine space. The constant give-and-take of the uterine push against the fetal body fosters proper development of flexion and extension muscular tone in the infant.

Mouradian LE, Als H. The influence of neonatal intensive care unit caregiving practices on motor functioning of preterm infants. Am J Occup Ther 1994;48:527–33.

  • 27.

    In the NICU, why is it important to provide boundaries for muscular development in a premature infant?

Synaptic connections are stimulated with repeated use, and they weaken with disuse. Once the infant is outside the womb, the loss of uterine containment cannot support muscular development. A weak, premature infant is unable to counteract the effects of gravity and assumes a flattened posture with extremity extension, abduction, and external rotation on the bed surface. Over time, this position will lead to abnormal developmental tone and positional deformities.

Grenier IR, Bigsby R, Vergara ER, et al. Comparison of motor self-regulatory and stress behaviors of preterm infants across body positions. Am J Occup Ther 2003;57:289–97.

  • 28.

    Why is it important to turn a premature infant every few hours?

Premature infants in the womb are buoyant and turn easily, equalizing pressure stimuli. In the NICU the impact of gravity inhibits any movement by the infant, who must rely on caregivers for proper positioning. Infants who are not turned are fixed in one position for prolonged periods and are at risk for development of muscular skeletal deformities that negatively affect the infant’s future motor development and the ability to eat, explore, play, and develop social and other skills.

Downs JA, Edwards AD, McCormick DC, et al. Effect of intervention on the development of hip posture in very preterm babies. Arch Dis Child 1991;66:197–201.

Sweeney JK, Gutierrez P. Musculoskeletal implications of preterm infant positioning in the NICU. J Perinat Neonat Nurs 2002;16:58–70.

  • 29.

    Premature infants often have misshapen heads. Why does this happen?

A progressive lateral flattening of the skull, called scaphocephaly or dolichocephaly, results in a narrow and elongated infant head. This occurs because the skull of the premature infant is thinner, softer, and at greater risk for postural deformities. Although this deformity appears to have no effect on brain development, lateral flattening may affect facial jaw and orbital alignment. Additionally, infant attractiveness has been identified as a factor that may affect parental social attachment. With good care, these changes in appearance can be significantly minimized.

Cartilidge PHT, Rutter N. Reduction of head flattening in preterm infants. Archives Dis Child 1988;63:755–757.

KEY POINTS: WHAT PROPER INFANT POSITIONING CAN PREVENT

  • 1.

    Cranial flattening (scaphocephaly)

  • 2.

    Torso deformities

  • 3.

    Scapular deformities

  • 4.

    Frog-leg pelvic deformities

  • 5.

    Facial deformities from endotracheal tubes

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