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Eight principles for patient-centred and family-centred care for newborns in the neonatal intensive care unit
  1. Jean-Michel Roué1,
  2. Pierre Kuhn2,
  3. Maria Lopez Maestro3,
  4. Ragnhild Agnethe Maastrup4,
  5. Delphine Mitanchez5,
  6. Björn Westrup6,
  7. Jacques Sizun7
  1. 1Department of Neonatal Medicine, CHRU de Brest, Brest, France
  2. 2Department of Neonatal Medicine, University Hospital of Strasbourg, Strasbourg, France
  3. 3Neonatal Unit, 12 de Octubre Hospital, SAMID Network, Madrid, Spain
  4. 4Department of Neonatology, Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark
  5. 5Division of Neonatology, Department of Perinatology, Hopital Armand-Trousseau, Paris, France
  6. 6Department of Neonatology, Karolinska University Hospital, Stockholm, Sweden
  7. 7Department of Neonatal Medicine, CHRU de Brest, Brest, France
  1. Correspondence to Dr Jean-Michel Roué, Service de reanimation pédiatrique, Hôpital Morvan, 2 Avenue Foch, Brest, Cedex 29609, France; jean-michel.roue{at}chu-brest.fr

Abstract

Despite the recent improvements in perinatal medical care leading to an increase in survival rates, adverse neurodevelopmental outcomes occur more frequently in preterm and/or high-risk infants. Medical risk factors for neurodevelopmental delays like male gender or intrauterine growth restriction and family sociocultural characteristics have been identified. Significant data have provided evidence of the detrimental impact of overhelming environmental sensory inputs, such as pain and stress, on the developing human brain and strategies aimed at preventing this impact. These strategies, such as free parental access or sleep protection, could be considered ‘principles of care’. Implementation of these principles do not require additional research due to the body of evidence. We review the scientific evidence for these principles here.

  • Neonatology
  • Neurodevelopment
  • Sleep
  • Pain
  • Evidence Based Medicine
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Prematurity is a public health issue because it includes about 8% of live births. Recent improvements in perinatal medical care have led to a dramatic increase in survival rates. Survival rates are 93.6% for infants born between 27 and 31 weeks of gestation and 98.9% between 32 and 34 weeks of gestation.1 Survival among extremely preterm infants born before 27 weeks of gestation is up to 70%.2 Unfortunately, adverse neurodevelopmental outcomes, including cognitive, language, visual-perceptual, sensory, and attention and learning deficits, occur more frequently in preterm infants.3 Although mainly described in infants born very preterm, these developmental abnormalities may also occur in late preterm infants.4 Medical risk factors for neurodevelopmental delays have been identified as male gender, sepsis and intrauterine growth restriction.5–7 Exposure to painful experiences and/or stressful environmental stimuli may also be potential sources of altered brain development.8 ,9 Family sociocultural characteristics are also associated with outcomes.10

‘Environmental neonatology’, ‘brain care’ or ‘developmental care’ are terms used to describe non-pharmacological strategies aimed at preventing the detrimental impact of overwhelming sensory input and procedures on the developing newborn brain.11 More research is needed in this field.12 Nevertheless, some procedures need to be implemented immediately, without additional research, because a reasonable level of evidence was recently reached and/or for ethical reasons. In 2005, the ESF European Research Network on Early Developmental Care13 suggested that eight procedures could be considered ‘principles of care’. Ten years later, a significant amount of data reinforces the need for broader implementation of these principles. We review the scientific evidence for these principles here (table 1).

Table 1

Evidence for the eight principles for family-centred care

Principle 1: free 24 hours a day parental access with no limitations due to staff shift or medical rounds

Philosophical, psychological and neuroscientific arguments justify the presence of the family in the unit. A key element of the family-centred care philosophy is that the family is the constant in a child's life and his primary source of strength and support.14 According to the European Association for Children in Hospital charter, ‘Children and young people in hospital and other healthcare services shall have the right to have their parents or parent substitutes with them anytime, anywhere, any place, 24-hours a day, regardless of the age of the child or young person’.15 In the same way, the Convention on the Rights of the Child states that a child has the right ‘to be cared for by his or her parents’ and not to ‘be separated from his or her parents against their will’.16

Parents' presence throughout hospitalisation and their involvement in their child's care has been linked to a lower prevalence of retinopathy of prematurity.17 Some studies also associated it with a reduced total length of stay and a reduced risk of moderate-to-severe bronchopulmonary dysplasia.18 Developmental aspects are also important to consider. The bonding and attachment process is based on the close proximity between mother and child and the mother's adapted reactions to her newborn's cues.19 Several studies support the existence of a sensitive bonding and attachment period in premature children similar to that in full-term newborns.20 The parent's ability to adjust to the situation of a premature birth and the quality of the early parent–infant relationship are critical aspects strongly suggested to impact the infant's competencies and development later.21 This process can be disrupted during neonatal intensive care unit (NICU) hospitalisation because of the physical separation and the mother's psychological vulnerability. Because the attachment process is supported by the proximity of the parent and child, free access to the baby is necessary at the preliminary point. The second is the psychological intervention for parents.

Principle 2: psychological support for parents

Parents of hospitalised newborn infants are exposed to a traumatic and stressful experience that could lead to acute stress disorder and/or post-traumatic stress disorder.22 This disorder can have a negative impact on the child's future development.23 A poor parental psychological well-being seems to be associated with behavioural problems of very low birthweight infants.24 According to a recent meta-analysis, early educational and behavioural interventions focused on coping and self-regulation reduce the symptoms of psychological trauma in mothers following a preterm birth.25 Thus, the parents' psychosocial support is focused on parenting education and therapeutic developmental support for the infant, an essential component of early intervention.26

Principle 3: pain management

Hospitalised neonates are exposed to numerous noxious events. A systematic review of observational studies identified an average of 7.5–17.3 invasive procedures per neonate per day associated with frequent inadequate pain management,27 with the most immature neonates having the more painful experiences. Neonatal exposure to pain has been identified as being significantly associated with specific changes in brain development in this population.28 Pain prevention, assessment, and treatment are important responsibilities of NICU professionals. Assessment of pain should be based on multidimensional measures using validated composite scales.29 Two scales have metric adjustments for prematurity (the PIPP and the N-PASS). Only two scales, EDIN and N-PASS, have demonstrated validity and reliability for prolonged neonatal pain.30 Providers must be trained regularly to ensure accurate use of the tools and to avoid inter-observer variability.30

Treatment of pain is a critical issue. Non-pharmacological approaches are based on scientific evidence. According to a recent Cochrane meta-analysis, non-nutritive sucking-related interventions, breast feeding, sucrose and swaddling/facilitated tucking are efficient in reducing pain reactivity during invasive procedures in preterm newborn infants.31–33

Although pharmacological treatment of pain may be useful and effective, practitioners worry about the neurotoxicity of drugs as demonstrated in animal models. No definite conclusions can be drawn concerning the negative impact of neonatal morphine on long-term neurodevelopmental outcomes in premature neonates.34 The American Academy of Paediatrics35 and the Canadian Paediatric Society36 recommend routine premedication, including opiates, for all non-emergency endotracheal intubations in newborns. Because of its rapid onset, fentanyl seems to be the most appropriate opioid in this case compared with morphine. Paracetamol may be helpful for postoperative morphine sparing after major surgery, but paracetamol is ineffective for reducing neonatal procedural pain and should not be used for this purpose.37 In ventilated preterm neonates, treating pain and stress episodically is recommended with no clear advantage for any opioids.38

Principle 4: supportive environment

Preterm and high-risk newborn infants are exposed to sensory stimuli very different from the in utero environment during a critical period of brain development including aberrant light and excess sound.39 ,40 Lasky and Williams demonstrated that extremely low birthweight neonates are exposed to noise levels averaging 56.44 dB(A) and light levels averaging 70.56 lux during their stay from 26 to 42 weeks of postmenstrual age in the NICU.39 Preterm infants can react to even moderate variations of sound or light, which can affect their psychological and behavioural well-being.41–43 This environment could also negatively impact the quality and duration of sleep which could alter brain development.40 Controlling the quality of the NICU environment is crucial. The sound level should not exceed 50 dB, with peaks <65 dB.44 Early exposure to the parents' voice seems to be important for the infant's cognitive and language development.45 Ambient lighting levels in infant spaces should be adjustable through a range of at least 10–600 lux, with access to natural daylight.44 Cycled lights seem beneficial compared with near darkness or continuous bright light.46

Principle 5: postural support

Positioning the neonate in the incubator is often driven by respiratory goals. Unfortunately, the efficiency of particular body positions in preterm newborn infants with apnoea or under mechanical ventilation in producing clinically relevant improvements was not demonstrated.47 ,48 Inappropriate positioning can lead to abnormalities in muscle tone in preterm newborns.49 Moreover, preterm newborn infants in unsupported extended positions can exhibit increased stress and agitation.50 Therefore, the objectives of postural support are to prevent musculoskeletal deformities and to enhance general behavioural development. The general goals of positioning the preterm infant in the incubator are to promote flexion, facilitate hand-to-mouth activity, facilitate midline orientation and symmetrical positioning, support posture and movement, optimise skeletal development and alignment, promote a calm state and prevent head deformities and torticollis.51 Appropriate swaddling by qualified caregivers improves neuromuscular development and motor organisation, decreases physiologic distress and supports self-regulatory ability in preterm infants.52 Hand containment or facilitated tucking, that is, holding the infant's arms and legs in a flexed position close to the midline of the body, seems efficient for reducing pain symptoms during procedures.53 Using a nest facilitates movements towards and across the midline, and reduces abrupt movements and frozen postures of the arms and legs.54 In newborn infants with no cardiopulmonary monitoring, respecting recommendations for sudden infant death syndrome risk reduction is necessary.55

Principle 6: skin-to-skin contact

Skin-to-skin contact between preterm infants and their parents has been associated with a decreased risk of mortality, severe infection/sepsis, hypothermia and hypoglycaemia, shortened the length of hospital stay, increased infant growth and breast feeding and mother–infant attachment56 ,57 as well as increasing parents' satisfaction, leading to better sleep organisation, and decreasing pain perception during procedures.58 Skin-to-skin contact is recommended by the WHO to improve preterm birth outcomes59 and by the American Academy of Pediatrics and the Canadian Paediatric Society.58 ,60 Skin-to-skin contact can be performed continuously or intermittently at all the levels of neonatal care in both low-income settings and developed countries.59 ,61

Principle 7: breast feeding and lactation support

Breast feeding has both short-term and long-term health benefits for preterm infants. Breast feeding or tube feeding with the infant's own mother's milk (OMM) reduces the risk of severe disease such as enterocolitis.62 The impact on neonatal sepsis is less clear.63 Breast feeding also has a positive long-term influence on neurodevelopment,64 with a possible dose effect on the volume and duration of feeding OMM.65 According to the European Society for Pediatric Gastroenterology, Hepatology, and Nutrition66 and the Baby-Friendly Hospital Initiative for Neonatal wards (BFHI),67 fresh OMM is the first choice in preterm infant feeding. When OMM is not available, fortified donor human milk is the recommended alternative.66

Establishing exclusive breast feeding in preterm infants is associated with factors in the infant, mother and clinical practice.68 Clinical practice should adapt the BFHI, which provides evidence-based recommendations on how to protect, promote, and support breast feeding in NICUs.67 ,69 ,70 The Ten Steps and Three Guiding Principles include early initiation of breast milk expression, early initiation of breast feeding with infant stability as the only criterion, non-separation of mother and infant, skin-to-skin contact, and family-centred care.

Principle 8: sleep protection

Sleep is a major physiological function in mammals and plays an important role in brain development.71 Sleep can be disrupted in the NICU by environmental factors such as unadjusted sound and light levels and/or medical and nursing procedures.42 For ethical reasons, the effect of sleep deprivation in hospitalised preterm newborn infants has never been studied. In healthy full-term infants, short-term sleep deprivation is associated with the development of obstructive apnoea and significant increases in arousal thresholds.72 Research in animal models demonstrated changes in respiratory patterns, altered subsequent learning, and long-term effects on behaviour and brain function due to sleep deprivation during the neonatal period.73 All these data promote the need to protect sleep in the NICU. Sleep patterns need careful observation in very preterm infants and, as rapid changes of state are found, disturbing infants as they are transitioning to sleep may be unhelpful.

Implementing these 8 principles

Gaps between evidence and practice have been observed in NICUs, with large differences between units within and between countries in Europe, with a North–South gap.74–77 Behavioural changes in healthcare professionals, parents and organisations through engagement and leadership are crucial.78 Evaluating and targeting potential barriers and facilitators are the first steps of implementation; training is also a major component. Flexibility in the implementation process is necessary in relation to the cultural context through a cyclical and long-term approach.

Some strategies are currently used in Europe and offer promising results. First are structured and individualised patient-centred and family-centred developmental care programmes starting at birth since the NIDCAP has shown promising results.79 Second, support for breast feeding and lactation using the BFHI in the maternity ward and the NICU has been efficient in increasing breastfeeding rates.69 ,80 Third, national or international parent organisations could play an important role in developing and implementing international standards of care as shown by the European Foundation for the Care of Newborn Infants through the European Standards of Care for Newborn Health project.81

Conclusion

These eight principles are based on a high level of evidence. Infants' and families' needs during this critical neonatal period are universal; therefore, efforts to implement these standards in all units in all countries are needed.

References

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Footnotes

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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