*5.2.3 Home care for a healthy preterm baby: neonatal discharge planning*

The infants who are born preterm are generally cared for in neonatal intensive care units (NICU), and a discharge planning is necessary for a comprehensive method. Because of the rate of mortality and morbidity, they are considered newborns with high risk after discharge.

Home care for the preterm newborn is coordinated by a complex team of caregivers: physician, paediatric primary care provider/family doctor, nurses, occupational and/or physical therapists, dieticians, pharmacists, parents and social workers. Neonatal discharge planning is developed in four major aspects:


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*The Family as Recipient and Provider of Home Care: A Primary Care Perspective*

Respiratory control, maintaining normal temperature (axillar 36.5–37.5°C and rectal temperature 36.6–38°C) in an ambient temperature of 20–22°C, oral feeding skills (breast and/or bottle) and an ascendant parallel growth curve are mandatory

A complete routine screening must be performed before discharge, and ophthalmological, hearing and prematurity anaemia screening must be included in the follow-up programme. The schedule of vaccine is planned according to the chronological age of preterm infant and follows the same schedule of a full-term newborn. Before discharge it is mandatory to observe the preterm infants for a minimum period of 90–120 minutes while sitting in a car safety seat because of frequent oxygen desaturation and episodes of apnoea, hypotonia or bradycardia. Families/caregivers should be trained by hospital staff regarding the proper position in the car safety seat [37, 38]. The parents/primary care providers of preterm infants planned to be discharged from NICU must prove competency in daily care regarding breastfeeding/bottle feeding, care for the infant's skin and genitalia and the way the baby is bathed and clothed. It is necessary for the parents/caregivers to demonstrate some basic medical knowledge on the possible signs of illness, like changes in pattern of feeding or sleep, significance of dry diapers or modifications of the stool aspect. The caregivers must be able to monitor the temperature of preterm baby, evaluate the respiratory pattern and skin colour and assess the muscular tonus. It is important to educate the parents/caregivers about the safe sleep position for preterm infants as they must sleep alone on a plan surface and in a supine position [39]. The readiness of parents to care for newborns discharged from NICU should be assessed in order to improve the discharge preparation process. A parental and nurse survey demonstrated that iterative improvements of the discharge preparation process lead to an increase in family self-assessment of discharge readiness and in nurse assessment of

*DOI: http://dx.doi.org/10.5772/intechopen.91926*

for planning the discharge of the preterm infant.

the family's emotional discharge readiness [40].

drug and alcohol use, smoking and poverty [42].

**5.3 Home care for children with special healthcare needs**

*5.3.1 Children and youth with special healthcare needs (CYSHCN)*

The definition of this category of children has become more comprehensive during time, and now it is accepted that CYSHCN are those "who have or are at increased risk of developing a chronic physical, developmental, behavioral, or emotional condition and require health and related services of a type or amount beyond that usually required by children" [41]. More than a quarter of families have at least one child with special healthcare needs. Data from the 2016–2017 National Survey of Children's Health (NSCH) indicate that 18.8% of children <18 years of age in the USA have special healthcare needs, with 13.2% of children being medically complex. In Western Europe non-communicable diseases (NCDs) for children under 15 represent almost 75% of the total diseases related with disability-adjusted life years (DALYs). In the first month of life, complications due to prematurity are the leading cause of death and DALYs, the second cause being congenital anomalies, which then holds the leading place until the age of 4 years. Some of these causes of death or DALYs for children are largely preventable as they are especially due to road injury,

The framework of care for CYSCHN comprises the Standards for Systems of Care for Children and Youth with Special Health Care Needs, version 2.0 [43]. It is necessary to coordinate all the parts of care, comprising family professional partnership, medical home, insurance and financing and early and continuous assessment of needs. All these elements have to be culturally and linguistically

#### *The Family as Recipient and Provider of Home Care: A Primary Care Perspective DOI: http://dx.doi.org/10.5772/intechopen.91926*

Respiratory control, maintaining normal temperature (axillar 36.5–37.5°C and rectal temperature 36.6–38°C) in an ambient temperature of 20–22°C, oral feeding skills (breast and/or bottle) and an ascendant parallel growth curve are mandatory for planning the discharge of the preterm infant.

A complete routine screening must be performed before discharge, and ophthalmological, hearing and prematurity anaemia screening must be included in the follow-up programme. The schedule of vaccine is planned according to the chronological age of preterm infant and follows the same schedule of a full-term newborn. Before discharge it is mandatory to observe the preterm infants for a minimum period of 90–120 minutes while sitting in a car safety seat because of frequent oxygen desaturation and episodes of apnoea, hypotonia or bradycardia. Families/caregivers should be trained by hospital staff regarding the proper position in the car safety seat [37, 38].

The parents/primary care providers of preterm infants planned to be discharged from NICU must prove competency in daily care regarding breastfeeding/bottle feeding, care for the infant's skin and genitalia and the way the baby is bathed and clothed. It is necessary for the parents/caregivers to demonstrate some basic medical knowledge on the possible signs of illness, like changes in pattern of feeding or sleep, significance of dry diapers or modifications of the stool aspect. The caregivers must be able to monitor the temperature of preterm baby, evaluate the respiratory pattern and skin colour and assess the muscular tonus. It is important to educate the parents/caregivers about the safe sleep position for preterm infants as they must sleep alone on a plan surface and in a supine position [39]. The readiness of parents to care for newborns discharged from NICU should be assessed in order to improve the discharge preparation process. A parental and nurse survey demonstrated that iterative improvements of the discharge preparation process lead to an increase in family self-assessment of discharge readiness and in nurse assessment of the family's emotional discharge readiness [40].

#### **5.3 Home care for children with special healthcare needs**
