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

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

*Suggestions for Addressing Clinical and Non-Clinical Issues in Palliative Care*

plan, if needed.

spreading such information.

*who need them the most [36]*

borns with high risk after discharge.

environment

support after discharge

to review some aspect of pregnancy, delivery and period from discharge [34]. It is also important to review the screening tests, to promote breastfeeding, to enhance the interest and to raise awareness regarding immunization. Involving the members of the family (father, grandparents) and observing the communications in the family allow the primary paediatric provider to coordinate a health

For the newborn and mother, the WHO recommends the use of home-based

The general practitioners' activity, especially the one with interest for child's care, is under a permanent challenge due to misinformation from online media. One of the most popular topics promoted in many countries by social media is the

Social media platforms like Facebook and Instagram have become an important source of medical information for patients, caregivers, healthcare providers and policy-makers, and they must assume responsibility towards their users. The statement released in September 2019 by WHO Director-General Dr Tedros Adhanom Ghebreyesus raises awareness on the importance of social media platforms for

*The World Health Organization welcomes the commitment by Facebook to ensure that users find facts about vaccines across Instagram, Facebook Search, Groups,* 

*Facebook will direct millions of its users to WHO's accurate and reliable vaccine information in several languages, to ensure that vital health messages reach people* 

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 new-

• The complete assessment of the newborn, routine screening and vaccination schedule and, if necessary, planning the follow-up for specific conditions

• Recognition of risk factors and link of the family with community services for

• A smooth as possible transition from NICU to primary care and medical home

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:

• Readiness assessment by care providers, including parents and family

records in order to improve some aspects of care. These include developing childcare knowledge, nurturing, involvement of the male in the child home care practices and communication between health providers and caregivers. There is not enough evidence in favour of a certain type of home-based record, the efficiency

anti-vaccine movement linked to immunization of children and adults.

*Pages and forums where people seek out information and advice.*

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

depending on the specific culturalism of a country [35].

**128**

appropriate for an optimal understanding and acceptance. The primary care provider and/or paediatric subspecialist evolving in an integrated team of care has to encourage the children and their families in self-management of issue of health and seeking advice for a good quality of life, healthy behaviors throughout all stages of life. Cooperation with the other caregivers involved in the care process must ensure an efficient and prompt sharing of information inside the team.

Care mapping for family and professional caregivers is available in some medical units, and designing a care map provides a valuable work tool.

Primary and preventive care is similar for CYSCHN and children without special needs. The routine healthcare maintenance comprises the vaccinations, routine screening and surveillance, assessment of visual and hearing impairment, behaviour and mental health problems, maltreatment, neglect and dental care.

An anticipated guidance for CYSCHN and their family should include information about the possible complication of disease, the short and long prognostic of illness and the manner in which the disease may affect the child's development, behaviour and potential to accomplish daily activities and family life.

The professional caregivers can enlighten children and the family about the possibility of illness exacerbation or relapse, changes in treatment or future procedures. The family of a child with special health needs, especially his siblings, is in risk to develop psychosocial functional stress and hence requires surveillance [44].

The partnership between caregivers, patient and his family centred by medical, social, developmental, behavioural, educational and financial needs of CYSHCN defines the concept of care coordination [45]. The plan of care must consider the patient and family health goals, a list of barriers, an inventory of medical supplies, home nursing, therapy plans, contact information for all caregivers, feeding plans and educational support. Home care services are more frequently provided to CYSHCN by the members of family and/or different types of caregivers.

#### *5.3.1.1 Chronic lung and pulmonary vascular diseases*

Home care for children with chronic lung disease, pulmonary hypertension with or without congenital cardiovascular malformation, metabolic disease, children's interstitial lung disease (ChILD) or haematological disorders has multiple benefits for the child and his family. Among them are the improvement of psychological aspects of the child's development, avoiding the family caregivers' burnout syndrome and a lower cost than hospitalization. The need of children with chronic hypoxaemia for home oxygen therapy (HOT) may be assessed by pulse oximetry. This is an important conclusion of the Clinical Practice Guidelines of the American Thoracic Society who strongly recommends HOT for children with cystic fibrosis and severe hypoxaemia, bronchopulmonary dysplasia with chronic hypoxaemia and pulmonary hypertension without congenital heart disease. HOT is conditionally recommended for children who cannot support positive airway pressure therapy for sleep breathing disorders with severe nocturnal hypoxaemia. For ChILD complicated with severe hypoxaemia, HOT is strongly recommended, while for ChILD with mild chronic hypoxaemia, dyspnoea or sleep desaturation, HOT is conditionally recommended. The chronic untreated hypoxaemia influences the growth parameters, the neurodevelopment milestones achievement and the architecture of sleep. Some studies even relate hypoxaemia with brief resolved unexplained events (BRUEs) [46].

#### *5.3.1.2 Home care for children with cerebral palsy*

Cerebral palsy is defined as a "group of permanent disorders of the development of movement and posture that cause activity limitations that are attributed to

**131**

even death [57, 58].

prostitution [59].

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

according with the family structure, resources and possible target.

*5.3.1.3 Home care for children with congenital heart disease (CHD)*

nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of CP are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior and by epilepsy and second-

In the neonatal period, successive evaluations have to be performed; some abnormality in muscle tonus, coordination, reflex and posture must be assessed and referred to the neurologist if needed. Primary care providers (physicians, physician assistants and nurse practitioners) are expected to develop an interventional plan

Congenital heart disease is the most common congenital anomaly. Due to surgery and advanced palliative therapies, the survival of children with special needs has increased. The American Academy of Pediatrics (AAP) and the American College of Cardiology (ACCA) reviewed the current literature and provided a policy statement whose purpose was to highlight the role of primary care providers in the management of patients with CHD and their families during all phases of life. The role of primary care providers was emphasized by the chronological approach of life stages of children with CHD. Parental counselling, support and coordination of care cover all stages of life, while prenatal diagnosis, predictive of neonatal need, early diagnosis of CHD, nutrition, growth and development, immunizations and academic and future career support are specific for specific periods of life.

Some particular requirements are important for the care of child with CHD: special immunizations (seasonal respiratory syncytial virus, influenza, vaccination for close contacts), nutrition and feeding issues (optimal growth velocity), obesity, practicing a sport and transition to adult care (especially for girls: appropriate

Child abuse and neglect is a complex and hypersensitive issue. Child maltreatment is a public health problem with lifetime health impact for children and their families [49]. Child maltreatment is defined by the World Health Organization as "all forms of physical and/or emotional ill-treatment, sexual abuse, neglect or negligent treatment or commercial or other exploitation, resulting in actual or potential harm to the child's health, survival, development or dignity in the context of a relationship of responsibility, trust or power" [50]. Children who have experienced maltreatment are at greater risk to evidence antisocial conduct, aggressive behaviour and substance abuse as a coping mechanism [51]. Chronic stress in early childhood alters the function and structure of the developing brain [52], influences the immune system function [53] and increases inflammatory markers [54], associated with physical and mental health disorders [55, 56]. Abuse and neglect of a child may take many forms. Physical abuse is an intentional injury caused by a parent or a caregiver upon a child. Physical child abuse can lead to serious physical injury, the most common form of abuse being bruising, but it can lead to severe fractures or

Sexual abuse is an exploitation of a child in any sexual manner. It is not restrained to physical contact such vaginal, oral or anal sex between an adult and a child and may include noncontact abuse, such as exhibitionism, fondling a child's genitals, masturbation in front of the child or forcing him to masturbate, sexual harassment by obscene phone calls or text messages and child pornography and

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

ary musculoskeletal problems" [47].

contraception, teenage pregnancy) [48].

*5.3.2 Child abuse and neglect*

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

nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of CP are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior and by epilepsy and secondary musculoskeletal problems" [47].

In the neonatal period, successive evaluations have to be performed; some abnormality in muscle tonus, coordination, reflex and posture must be assessed and referred to the neurologist if needed. Primary care providers (physicians, physician assistants and nurse practitioners) are expected to develop an interventional plan according with the family structure, resources and possible target.

## *5.3.1.3 Home care for children with congenital heart disease (CHD)*

Congenital heart disease is the most common congenital anomaly. Due to surgery and advanced palliative therapies, the survival of children with special needs has increased. The American Academy of Pediatrics (AAP) and the American College of Cardiology (ACCA) reviewed the current literature and provided a policy statement whose purpose was to highlight the role of primary care providers in the management of patients with CHD and their families during all phases of life.

The role of primary care providers was emphasized by the chronological approach of life stages of children with CHD. Parental counselling, support and coordination of care cover all stages of life, while prenatal diagnosis, predictive of neonatal need, early diagnosis of CHD, nutrition, growth and development, immunizations and academic and future career support are specific for specific periods of life.

Some particular requirements are important for the care of child with CHD: special immunizations (seasonal respiratory syncytial virus, influenza, vaccination for close contacts), nutrition and feeding issues (optimal growth velocity), obesity, practicing a sport and transition to adult care (especially for girls: appropriate contraception, teenage pregnancy) [48].

#### *5.3.2 Child abuse and neglect*

*Suggestions for Addressing Clinical and Non-Clinical Issues in Palliative Care*

an efficient and prompt sharing of information inside the team.

units, and designing a care map provides a valuable work tool.

and mental health problems, maltreatment, neglect and dental care.

behaviour and potential to accomplish daily activities and family life.

*5.3.1.1 Chronic lung and pulmonary vascular diseases*

appropriate for an optimal understanding and acceptance. The primary care provider and/or paediatric subspecialist evolving in an integrated team of care has to encourage the children and their families in self-management of issue of health and seeking advice for a good quality of life, healthy behaviors throughout all stages of life. Cooperation with the other caregivers involved in the care process must ensure

Care mapping for family and professional caregivers is available in some medical

Primary and preventive care is similar for CYSCHN and children without special

An anticipated guidance for CYSCHN and their family should include information about the possible complication of disease, the short and long prognostic of illness and the manner in which the disease may affect the child's development,

The professional caregivers can enlighten children and the family about the possibility of illness exacerbation or relapse, changes in treatment or future procedures. The family of a child with special health needs, especially his siblings, is in risk to develop psychosocial functional stress and hence requires surveillance [44].

The partnership between caregivers, patient and his family centred by medical, social, developmental, behavioural, educational and financial needs of CYSHCN defines the concept of care coordination [45]. The plan of care must consider the patient and family health goals, a list of barriers, an inventory of medical supplies, home nursing, therapy plans, contact information for all caregivers, feeding plans and educational support. Home care services are more frequently provided to CYSHCN by the members of family and/or different types of caregivers.

Home care for children with chronic lung disease, pulmonary hypertension with or without congenital cardiovascular malformation, metabolic disease, children's interstitial lung disease (ChILD) or haematological disorders has multiple benefits for the child and his family. Among them are the improvement of psychological aspects of the child's development, avoiding the family caregivers' burnout syndrome and a lower cost than hospitalization. The need of children with chronic hypoxaemia for home oxygen therapy (HOT) may be assessed by pulse oximetry. This is an important conclusion of the Clinical Practice Guidelines of the American Thoracic Society who strongly recommends HOT for children with cystic fibrosis and severe hypoxaemia, bronchopulmonary dysplasia with chronic hypoxaemia and pulmonary hypertension without congenital heart disease. HOT is conditionally recommended for children who cannot support positive airway pressure therapy for sleep breathing disorders with severe nocturnal hypoxaemia. For ChILD complicated with severe hypoxaemia, HOT is strongly recommended, while for ChILD with mild chronic hypoxaemia, dyspnoea or sleep desaturation, HOT is conditionally recommended. The chronic untreated hypoxaemia influences the growth parameters, the neurodevelopment milestones achievement and the architecture of sleep. Some studies even

relate hypoxaemia with brief resolved unexplained events (BRUEs) [46].

Cerebral palsy is defined as a "group of permanent disorders of the development of movement and posture that cause activity limitations that are attributed to

*5.3.1.2 Home care for children with cerebral palsy*

needs. The routine healthcare maintenance comprises the vaccinations, routine screening and surveillance, assessment of visual and hearing impairment, behaviour

**130**

Child abuse and neglect is a complex and hypersensitive issue. Child maltreatment is a public health problem with lifetime health impact for children and their families [49]. Child maltreatment is defined by the World Health Organization as "all forms of physical and/or emotional ill-treatment, sexual abuse, neglect or negligent treatment or commercial or other exploitation, resulting in actual or potential harm to the child's health, survival, development or dignity in the context of a relationship of responsibility, trust or power" [50]. Children who have experienced maltreatment are at greater risk to evidence antisocial conduct, aggressive behaviour and substance abuse as a coping mechanism [51]. Chronic stress in early childhood alters the function and structure of the developing brain [52], influences the immune system function [53] and increases inflammatory markers [54], associated with physical and mental health disorders [55, 56]. Abuse and neglect of a child may take many forms. Physical abuse is an intentional injury caused by a parent or a caregiver upon a child. Physical child abuse can lead to serious physical injury, the most common form of abuse being bruising, but it can lead to severe fractures or even death [57, 58].

Sexual abuse is an exploitation of a child in any sexual manner. It is not restrained to physical contact such vaginal, oral or anal sex between an adult and a child and may include noncontact abuse, such as exhibitionism, fondling a child's genitals, masturbation in front of the child or forcing him to masturbate, sexual harassment by obscene phone calls or text messages and child pornography and prostitution [59].

Child marriage is considered a disguised form of sexual abuse, and it also represents a violation of children's rights. The boys are also concerned, but girls remain disproportionately affected. Poverty, lack of education, regional customs, tradition and religions can be a pressure that leads to child marriage. Child marriage is most common in developing countries, but it happens even in developed countries as many countries' laws allow children under 18 to marry upon parental consent or public authority. This practice denies children of their right for childhood, education or having their own opinion about sexuality and reproduction. Child marriage is linked to early pregnancy, health risks like sexually transmitted infections, obstetric fistula and maternal mortality.

Emotional abuse is a behaviour model that affects a child's emotional development and his health outcome. It is more challenging than physical or sexual abuse, being often difficult to diagnose. Emotional abuse can lead to anxiety, depression, low self-esteem, post-traumatic stress disorder and suicidal tendency.

Medical child abuse or factitious disorder imposed on another (previously called Munchausen syndrome by proxy) is an unnecessary and a potentially harmful treatment received by a child due to a caregiver seeking medical help for exaggerated or made-up symptoms of the child in his or her care [60]. It should be suspected if the child has frequent, unexplained health issues and multiple hospital admissions. The most common form when a mother induces an illness to her child consists in symptoms that usually occur only in her presence and may not be objectivized during the medical evaluation [61]. Neglect is very difficult to conceptualize, being an omission behaviour, and consists in failure of a parent or a caregiver to address the basic needs of a child. It can include physical necessities like food, hygiene, clothing, shelter or protection, educational (schooling and education) and medical neglect defined as a failure to provide necessary medical, dental or mental healthcare for the child [62].

Refusing vaccination can also be considered "medical neglect".

Child maltreatment provides a significant challenge for medical providers. Practitioners have an important role in prevention and recognition of neglect and abuse and assessment and treatment of children at risk. Once the condition is suspected, they are obligated to report it. Programmes of prevention and intervention aim for early recognition and intervention to protect children's wellbeing.

The primary approach is addressed to the general population by an anticipatory guidance for parents and care providers and by implementing media content and school programmes to educate the population about signs and behaviour of child abuse and neglect.

The secondary approach is addressed to families if risk factors such as poverty, low education, substance abuse, mental health issues, family conflict or violence, social isolation, neighbourhood disadvantage and violence are present. The purpose of intervention is to encourage positive interaction between parent and children and to break down the coercive cycle [63].

Families with abused or neglected children may benefit from a tertiary approach. To assess these cases, the multidisciplinary team should consist of therapist, social workers, police, general practitioner, paediatrician and teachers. An individual plan best suited to the family needs (e.g. individual therapeutic interventions, home visiting, family behaviour therapy, social integration) has to be established. If the intervention fails, foster care system may be considered. In this case certain challenges need to be acknowledged: managing challenging behaviour, interacting with biological families and even guiding children into adoption.

**133**

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

**and telemedicine in home-based care for children**

**5.4 Worldwide tendencies: community health worker (CHW), misinformation,** 

The community health worker, named as such in the USA and defined as a frontline public health worker who is a trusted member of the community, is present under different names in several European countries [64]. This trusting relationship enables the worker to serve as an intermediary between health/social services and the community to facilitate access to services and improve the quality and cultural competence of service delivery [65]. Preventive maternal and child health (MCH) interventions delivered by CHWs through home visiting have improved important maternal and child outcomes. Efforts are targeted towards early prenatal care, breastfeeding, reduction of maternal morbidity and perinatal mortality and appropriate childhood immunizations. Home visiting interventions lead to a decreased incidence of preterm birth and low birthweight [66]. By having a common language, a similar socioeconomic status and understanding life experiences of their clients, CHWs are accepted by vulnerable and disenfranchised groups. Being integral contributors in collaborative health-based and community-based teams, CHWs improve comprehensive care and contribute to health improvements and

Misinformation has reached an unprecedented level in the digital age. Forums, blogs and other alternative news sources facilitate fake news or inaccurate information penetration. Health information at every level, from ordinary people to researchers and policy-makers, is troubled by misinformation. It can contain false narratives and lead to poor decision-making and dangerous behaviours [67]. The Internet is a rapidly evolving territory. Intentionally or unintentionally misleading or provocative information may have serious consequences [68]. A research performed on 210 subjects showed, as expected, that people use search engines to learn about serious or highly stigmatic conditions, but surprisingly, an important amount of sensitive health information is sought and shared via social media [69]. The term telemedicine meaning "healing at a distance" was

An international Group Consultation on WHO's Telemedicine Policy adopted the following definition for health telematics: "Health telematics is a composite term for health-related activities, services and systems, carried out over a distance by means of information and communication technologies, for the purpose of global health promotion, disease control and healthcare, as well as education, management and

Telemedicine can be synchronous or asynchronous. Synchronous or "real-time" care consists in a bidirectional audio-visual videoconferencing between a patient and a more or less remote healthcare provider. Asynchronous or "store-and-forward" care comprises the transmission of medical information to a distant provider. Telemedicine in children may be useful in improving paediatric concussion care in remote areas and communities [70]. Although international guidelines recommend urgent medical assessment after a concussion [72], a study on 126,654 children and youth showed that, at best, only one third of youth sought medical

In many countries, including Romania, patients living in remote rural areas face numerous geographic, socioeconomic and cultural barriers in accessing primary and specialized healthcare services. Considering the fact that especially in these areas medical assessment and clearance for youth with concussion falls upon primary care providers, telemedicine would improve results and ease the pressure of malpractice.

follow-up and obtained clearance to return to sport activities [73].

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

cost savings [66].

introduced in 1970 [70].

research for health" [71].
