Preparing families to care for ventilated infants at home

Advances in neonatal care have led to increased survival of infants with complex medical needs and technology dependence. Transition of the ventilator-dependent infant from hospital to home is a complex process that requires extensive coordination between the medical team and family. Home caregivers must be prepared to provide routine care for the ventilator-dependent child and respond to life-threatening emergencies. Families should be counseled on the need for home nursing, medical equipment and an adequate home environment to ensure a safe transition to home. Throughout the process, the family may require financial, social and psychological support. A structured education and transition process that is clearly communicated to parents is necessary to have an effective partnership with families.     

Going home: what NICU nurses need to know about home care

Pediatric home health care enables patients to be at home with their families in settings that bring them joy, comfort, and the security we all feel when we are at home. There is also a feeling, no matter how small, that the parents have some control over what is happening to their child. Infants with multiple needs require in-depth discharge planning. There are the physical and health concerns of the preterm infant and the potential complications that he could still develop. Parent teaching is vital for the successful transition from hopital to home. When the neonatal discharge nurse is aware of what difficulties the parents and the patient might face at home, her teaching can be tailored to meer the specific needs of these vulnerable, complicated infants. This article discusses the discharge planning process, which begins upon admission to the neonatal intensive care unit, as well as common problems encountered by many premature infants discharged home.     

Hepatitis B virus infections transmitted from retarded children to their families during brief home exposure

Hepatitis B virus (HBV) infection is endemic among institutionalized retarded patients, who usually have mild, anicteric hepatitis following nonparenteral exposure. We evaluated the risk of HBV infection (as evidenced by serologic studies) among their contacts, including noninstitutional caretakers, during brief home exposure. Caretakers shaved, bathed, and changed diapers for five patients during home visits or foster home placements. Seven of the 14 caretakers, who were exposed for 3-12 months, developed antibodies (anti-HBc and/or anti-HBs). A mother and her daughter's caretaker were found to have asymptomatic acute HBV infection, and the mother developed antibodies to HBs, HBc, and HBe. In a second household, another caretaker became anti-HBs-positive. Only one of nine play contacts and none of seven casual contacts had markers of past or present HBV infection. The study was a unique opportunity to retrospectively and prospectively monitor HBV transmission. Our results show that noninstitutional caretakers deserve the protection of HBV vaccine to diminish the potential for chronic infection and transmission of HBV infection.     

Tracheostomy in infants: parent education for home care

Children with tracheostomies are increasingly discharged home for continued care by their parents. Nurses are responsible for providing these parents with the extensive education required for a smooth and successful transition to home care. This article is intended to help neonatal and pediatric nurses to effectively prepare the parents of an infant with a tracheostomy to provide safe, quality care to their child after being discharged from an acute care setting to their home. This article discusses the knowledge, attitudes, and skills the parents are required to acquire prior to the infant's discharge. Home ventilation, airway management, suctioning, tracheostomy care, emergency management, safe home environment, equipment for continuous or intermittent ventilation, and supplies necessary for care are some of the topics discussed.     

Supporting the health care transition from adolescence to adulthood in the medical home

Optimal health care is achieved when each person, at every age, receives medically and developmentally appropriate care. The goal of a planned health care transition is to maximize lifelong functioning and well-being for all youth, including those who have special health care needs and those who do not. This process includes ensuring that high-quality, developmentally appropriate health care services are available in an uninterrupted manner as the person moves from adolescence to adulthood. A well-timed transition from child- to adult-oriented health care is specific to each person and ideally occurs between the ages of 18 and 21 years. Coordination of patient, family, and provider responsibilities enables youth to optimize their ability to assume adult roles and activities. This clinical report represents expert opinion and consensus on the practice-based implementation of transition for all youth beginning in early adolescence. It provides a structure for training and continuing education to further understanding of the nature of adolescent transition and how best to support it. Primary care physicians, nurse practitioners, and physician assistants, as well as medical subspecialists, are encouraged to adopt these materials and make this process specific to their settings and populations.     

Prior pain induces heightened motor responses during clustered care in preterm infants in the NICU

BACKGROUND: Acute pain is a significant stressor for preterm infants in neonatal intensive care units (NICU); however, little is known about the effects of acute pain on subsequent motor responses during clusters of tactile handling. AIMS: (1) To compare facial, body and heart rate reactivity in preterm infants at 32 weeks gestational age (GA) during routine care-giving tasks following a rest period (RCC: diapering, measuring abdominal girth and axillary temperature, mouth care) with their responses to Clustered Care following blood collection (PCC). (2) To examine how GA at birth affects patterns of stress and self-regulatory behaviors during RCC and PCC. STUDY DESIGN: Within-group crossover design (random order). SUBJECTS: Preterm infants, N=54 (mean GA at birth 29.3 +/- 2.2 weeks; mean birth weight 1257 +/- 423 g) were assessed at 32 weeks GA in the NICU. OUTCOME MEASURES: The Newborn Developmental Care and Assessment Program (NIDCAP) and Neonatal Facial Coding System (NFCS) were coded from continuous bedside video recordings. Changes in mean heart rate (HR) were computed using custom physiologic software. RESULTS: All infants had heightened facial, body and HR responses when CC followed a painful procedure compared to when they had not been handled prior to CC. Infants born at earlier GA (<30 weeks) had equal numbers of stress cues during RCC and PCC, but dampened self-regulatory behaviors during PCC. CONCLUSION: Prior pain induces heightened biobehavioral reactivity in preterm infants during subsequent tactile procedures. In addition, clustering care is particularly stressful for infants born at earlier GA.     

Factors associated with rehospitalizations of very low birthweight infants: impact of a transition home support and education program

Objective

To determine the effects of a transition-home education and support program, BPD, and health insurance type on VLBW infant rehospitalizations at 3 and 7 months corrected age. It was hypothesized that the transition-home program would be associated with decreased rehospitalizations between Phase 1 and 2, and public health insurance and BPD would be associated with increased rehospitalizations.

Methods

274 infants with birth weight < 1500 g were enrolled in two successive years of a transition-home program (Phase 1—start-up) and (Phase 2—full implementation) and followed to 7 months CA.

Results

The Phase 2 rehospitalization rates were lower but not statistically significant at both 3 months (20% and 15%; p = 0.246), and 7 months (24% and 17%; p = 0.171). Infants with public insurance had twice as many rehospitalizations by 3 months (28% versus 11%; p = 0.018) in Phase 1. In regression analyses the intervention effects did not achieve significance for the cohort at 3 months (OR = 0.63; CI = 0.33 to 1.20) or 7 months (OR = 0.61; CI = 0.33 to 1.13). BPD and public insurance did not reach significance in the models whereas siblings were significantly associated with increased odds of rehospitalization. In subgroup analyses for infants on pubic health insurance the intervention significantly decreased the odds of rehospitalization between Phase 1 and 2(OR = 0.43; CI = 0.19 to 0.96) at 3 months.

Conclusions

Our findings suggest that a transition-home program may be beneficial to reduce the rehospitalization rate for VLBW infants, and infants on public insurance may derive greater benefit.     

Predictive accuracy of the Miller assessment for preschoolers in children with prenatal drug exposure

The Miller Assessment for Preschoolers (MAP) is a standardized test purported to identify preschool-aged children at risk for later learning difficulties. We evaluated the predictive validity of the MAP Total Score, relative to later cognitive performance and across a range of possible cut-points, in 37 preschool-aged children with prenatal drug exposure. Criterion measures were the Wechsler Preschool & Primary Scale of Intelligence-Revised (WPPSI-R), Test of Early Reading Ability-2, Peabody Picture Vocabulary Test-Revised, and Developmental Test of Visual Motor Integration. The highest predictive accuracy was demonstrated when the WPPSI-R was the criterion measure. The 14th percentile cutoff point demonstrated the highest predictive accuracy across all measures.     

Developmental patterns from 1 to 4 years of extremely preterm infants who required home oxygen therapy

BACKGROUND: Bronchopulmonary dysplasia (BPD) remains a common complication of prematurity, with those being discharged on home oxygen at particularly high risk of adverse developmental outcomes. AIMS: To compare the developmental patterns, from 1 to 4 years, of extremely preterm infants with BPD discharged from hospital on home oxygen, extremely preterm infants with BPD discharged breathing room air, and extremely preterm infants without BPD. SUBJECTS: Two hundred and seventy-six infants with a gestational age of <28 weeks or birthweight <1000 g, free from sensory and motor disabilities who were followed up longitudinally to 4 years corrected age. OUTCOME MEASURES: Children were assessed on the Griffiths Mental Development Scales at 1 and 2 years corrected age, and the McCarthy Scales of Children's Abilities at 4 years corrected age. RESULTS: The developmental trajectories of the three groups did not differ significantly, however at 1 year corrected age the non-BPD group had significantly higher developmental scores than both BPD groups. At 2 years corrected age the non-BPD group had significantly higher developmental scores than the BPD-home oxygen group, and at 4 years corrected age no differences between the groups were evident. CONCLUSIONS: Extremely preterm children with BPD exhibited an initial developmental lag compared to preterm peers. Children with BPD discharged breathing room air had developmental scores at 2 years corrected age that were comparable to the non-BPD group, but those discharged on home oxygen still had lower developmental scores. At 4 years, no differences between the groups were evident.     

Use of translation cards to increase communication with non-English-speaking families in the NICU

Parents of infants in the neonatal intensive care unit report that communication with staff helps to relieve the many stresses they face. Particularly challenging for NICU nurses, however, is communication with non-English-speaking families. To improve this communication at Vanderbilt Children's Hospital in Nashville, illustrated cards have been developed to translate phrases commonly used in the nursery into foreign languages. Three different sets of cards provide translations in Spanish, Kurdish, and Serbo-Croatian (the languages most commonly encountered at this hospital), and a fourth set, in English, is used for individuals with hearing impairments. These cards aid the bedside nurse in giving a basic report and in encouraging parental participation in the infant's care. Nurses who have used the cards report that parents respond to the questions and seem to appreciate the attempt to communicate.     

Barriers to medical care for homeless families compared with housed poor families

To evaluate health access and health services utilization of homeless families we selected a systematic sample of 194 homeless families from 10 shelters in Los Angeles and 196 housed poor families from the same geographic regions of Los Angeles selected from welfare offices. Both samples relied primarily on Medicaid for their health insurance (61% and 96%). However, more homeless families than housed poor families were currently uninsured (26% vs 2%), had lost health insurance over the past year (50% vs 21%), and had spent a greater percentage of the past year uncovered by health insurance (22% vs 6%). Homeless families were much less likely to report a regular provider for preventive care (81% vs 94%) or for sick care (72% vs 95%). Moreover, of those reporting a regular provider, homeless families were more likely than housed poor families to use emergency departments or clinics rather than private offices for both preventive care (35% vs 15%) and sick care (37% vs 26%). Barriers to health care more frequently prevented homeless families from obtaining care (38% vs 28%). These findings suggest that homeless families have greater problems of access to health care than other poor families, related to lack of insurance, lack of a regular primary care provider, and other barriers. Programs to address these barriers for homeless families are presented.     

Coming to terms with daily separation: observation of two children's transition from home to nursery

This paper uses material from two weekly observations of the transition of two 2 year-olds into nursery care. The observations are ‘participant’ observations which were undertaken by the author who was also working in the nursery at the time. The paper focuses on the emotional challenges and developmental shifts for each child. The first observation describes a little boy's efforts to cope with the loss of his mother during the day, and his separation anxiety and sibling/peer conflicts, which went relatively unrecognised by teachers. A surge of depressive pain is observed. The second observation looks at a little girl's struggle with the overwhelming anxiety of separation. A change is observed, as routines are established and she reunites with her parents each day; she gradually seems to begin to internalise a sense of being contained in her mother's mind even when she is separate. The developmental tasks for this age group are discussed and the process of developing confidence in the presence of a good internal parental figure (object) is seen to be essential for the development of external relationships outside the family. The necessity to support all children, but especially those who struggle most with separation, is discussed.     

Ventilatory support for infants in emergency and in the intensive care unit

Pediatric anesthesia and intensive care management has improved dramatically over the past two decades. Improved understanding of the pathophysiology underlying newborn surgical emergencies, new medications and new modes of ventilatory support have all contributed to better patient outcome. The authors have reviewed the anatomy and physiology of the infant airway, indications for and principles of endotracheal intubation, the management of newborn surgical emergencies, indications for post-operative ventilatory support, different modes of mechanical ventilation available, complications of mechanical ventilation with weaning parameters and extubation criteria. The introduction of nitric oxide and the implications of extracorpreal membrane oxygenation in the management of newborn emergency refractory to conventional ventilation are discussed.     

The importance of quiet in the home: Teaching noise awareness to parents before the infant is discharged from the NICU

Research over several decades describes various adverse health effects of noise on the hospitalized neonate. Noise is a direct cause of long-lasting auditory problems and a significant cause of cardiovascular and respiratory problems and neurologic impairment. Many hospitals have turned the NICU into a quiet environment that promotes the neonate's health and well-being. But auditory pathways continue to develop during the neonatal period, reaching maturation at 12 months and beyond. Some of this development thus occurs after the neonate is discharged from the hospital. It is a responsibility of NICU professionals to teach families about the health benefits of noise modulation and planned quiet in the home environment. This teaching may make a world of difference to the continued healthy growth, development, and well-being of the infant.     

Thirty-six-month outcome of prenatal cocaine exposure for term or near-term infants: impact of early case management

Gestational cocaine use is associated with serious pregnancy complications having fetal and neonatal implications. However, many cocaine-abusing women deliver uneventfully at term. The purpose of this study was to assess the neurodevelopmental outcome for term or near-term infants after prenatal cocaine exposure and to determine whether that outcome would be modified by early, intensive family case management. Cocaine-exposed infants identified after delivery at an urban hospital were alternately assigned to receive case management (n = 70) or routine follow-up (n = 48). A matched, non-drug-exposed group of infants was identified for comparison (n = 41). Infants aged up to 36 months were serially evaluated in a multidisciplinary clinic with cognitive, psychomotor, and language testing. Group comparisons were performed using one-way analysis of variance. There were no statistical differences in mean cognitive, psychomotor, or language quotients between cocaine-exposed and non-drug-exposed infant groups aged up to 36 months. At 6 months of age, case-managed cocaine-exposed infants had a significantly higher mean Bayley Mental Developmental Index score than those who were routinely managed. However, no differences were present at subsequent assessments. Among cocaine-exposed infants who remained with their mothers at 36 months, verbal scores were significantly higher for case-managed compared with routine-managed infants. The negative effects of urban, low socioeconomic status may overshadow the impact of prenatal cocaine exposure on early childhood outcome for those infants born without prenatal complications.     

Smoothing the transition of adolescents with CF from pediatric to adult care: Pre-transfer needs

IntroductionIn France, the cystic fibrosis (CF) care pathway is performed in 45 CF centers, the life expectancy of patients has steadily increased, but to date there are no national recommendations for the transition from pediatric to adult care. The transition to an adult CF center still raises questions about the relevance of its organizational arrangements. The “SAFETIM need” study aimed to identify the organizational needs both of patients and of parents before the transfer to an adult CF center.MethodsThis was a prospective, observational, multicenter study conducted between July 2017 and December 2018, involving the three CF centers of a regional network in southeastern France. Each adolescent registered with the center and his or her parents were interviewed individually, on the same day, during the 6 months leading up to transfer. They participated in semi-structured interviews during one of their routine consultations at the CF center. The interview manual, based on literature reviews and targeting national recommendations, was tested and validated by the national CF therapeutic education group (GETheM). All interviews were transcribed and checked by two different people, and analyzed by two researchers individually. The results were classified by topic according to content categorization.ResultsOverall, 43 adolescents and 41 parents were interviewed, respectively, who were followed up by CF centers: 14% (n = 6) in a mixed CF center (pediatric and adult); 19% (n = 8) and 67% (n = 29), respectively, in two different pediatric CF centers. Adolescents were between 16 and 19 years old. For adolescents, the average interview time was 5.11 min. (standard deviation [SD]: 3.8 min; minimum: 2.53 min; maximum: 17.14 min). For parents, the average interview time was 7.99 min (SD: 3.56 min, minimum: 3.43 min; maximum: 22.50 min).DiscussionOur study enquired only about the preparation and organization of the transfer. We identified three areas of actions matching the needs of adolescents and parents before transfer. The first one is to anticipate team change to prepare follow-up in their future CF center: acquire new skills, consider the future CF center according to the adolescent's curriculum, be involved in the transition process. The second area is to accompany the upcoming change. The care team could help by providing information and support during the start of teenagers’ transition toward autonomy. And parents were aware that the CF center change will reverse roles. They must provide their own knowledge and manage the ambivalence of this as well as letting go. The third one is to announce the transition process and functioning of the future adult CF center, because the transition would require time to find their place (patients and parents) with the new team.ConclusionThe “SAFETIM needs” pre-transfer study results show that we can identify the main criteria to be developed and strengthened, to promote a smooth, high-quality transition from pediatric to adult CF care for patients in France. For most patients, the transition cannot be prepared at the last minute. Caregivers need to develop specific skills in adolescent and young adult care and follow-up. Each team must consider the transition as a normal part of the patient care cycle. While it must be structured, some flexibility must be allowed so as to give everyone the chance to be prepared and to personalize the care.