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Pediatric as a science of the healthy and sick child its place in general medicine. Main historical stages of pediatric in Ukraine.  Organization principle and methods of organization work for children in Ukraine.

Associated  Proff. Nykytyuk S

Paediatrics is the science about healthy and sick children. Propaedeutics of Paediatrics is introduction to paediatrics. Propaedeulics of Paediatrics Studies regularities of growth and development of a child, methods of examination of a child, diagnosis of pathologic symptoms and syndromes of diseases in children

The study of Propaedeutics of Paediatrics is a component of the program for education of a physician. The knowledge of (hts science is necessary for professional activity of every physician.

Concrete aims:

-to know the place of Propaedeuties of Paediatrics in general medicine (subject 1);

to interpret the historical stages of development of paediatrics in Ukraine (subject 1); -to know the principles of organization of treatment and prophylactic attendance to children (subject 2);

to know ihe rules of sanitary-hygienic and epidemiologic regimens in children's mcdical-prophylactic institutions (subject 2);

to be able to interpret the criteria of a child's health (subject 2);

-to analyse the main statistic data of medical-prophylactic

institution activity {subjeel 2);

to analyse peculiarities of different periods of children's age (subject 3);

-to know peculiarities of the newborn period (subjeel 4).

Conteu (s

Paediatrics is the science about healthy and siek children. The origin of the definition of this science is based on Greek words "pais", a child, and "iatreia", medical treatment. Pacdiallies is a young branch of mcdical science, and in the same time Paediatrics is a branch of medical cart:. The methodology, medical equipment and terminology of paediatrics have both common features with such course unite as interna] diseases, surgery, obstetrics and also tis own special methods of diagnosis, treatment and special, terminology.

The knowledge of paediatrics is necessary for the physician of any speciality for the traditional mcdical education. It is necessary for proper understanding of human development as a biological type- Besides, it helps lo understand and estimate patliologial processes, whose onset starts in childhood, For example, tuberculosis starts in childhood, only children have it in such early stages, as primary TB complex, the clinical picture of TB process in children has some peculiarities such as a trend to generalization, ll is clear, therefore, that the physician's correct knowledge of TB infection and its prevention has lo be based on Ihe knowledge of the early stage of TB

The course of Paediatrics is large; it is composed of four parts. The first part is propaedeutics of childhood diseases Its course includes study of anatomic and physiologic features of the child during ah stages of childhood, the specificity of medical examination of III children semiotics (semciology, symptomatology) of ihe most frequently encountered diseases in childhood, dictctics, and the basic rules of nutrition for healthy children. Propaedeutics also includes principles of cane for and management of healthy and ill children.

Paediatrics as a branch of mcdicine is quite young, but some attempts lo substantiate the hygiene, dietetics and pathology of children can be found irL old historical documents in manuscripts of ancient Hindu, bgyptian and father of medic i tie - Hippocrates (460-370 B.C.).

Paediatrics started to develop iti the middle of XVII century, but as ei special science is started lo farm only in llic beginning of XIX century, it formed as a branch  of therapy and obstetrics. Paediatrics developed successfully in Europe, where paediatric schools were founded in England, Germany and France. The development of our national paediatrics is connected with its development in Russia. Paediatrics as an independent branch of medicine started to form in Russia only in 1830-1834 A certain part in the study of childhood diseases was played by a children's hospital, founded in St. Petersburg in 1834. At the same lime a professor of the Obstetric Department of St. Petersburg Medical- Surgical Acadcmy S.F. Khotovilsky started to deliver a theoretical course of Paediatrics for students. It was an outstanding event because such a compulsory course or Paediatrics had not been delivered in any country of the world. S,F. Khotovitsky wrote his textbook "Paediatrics" (1847), which included an extensive course of paediatrics as the science "about the distinction peculiarities in the structure and diseases of the child's organism and resultant peculiarities in the prevention an J treatment of children's diseases". Many ideas of S.F. Kholovitsky about prophylaxis, treatment of some diseases, causes of children mortality and measures for its prevention were very progressive. Two ppediatric schools (in St Petersburg and Moscow) were founded in Russia.

Many of Russia's professors of paediatrics were native of Ukraine: M.M. Maximovich-Ambodic, S.F. Khotovitsky, A A. Kissel.

Paediatric departments of provincial universities in Russia were founded in Kiev (1387), Kharkiv (1892) and Octesa (1905). It was Ihe beginning of the organization of three Ukraine's paediatric schools. The contribution of Ukrainian scientists to the development of paediatrics is veTy considerable.

The first head of the Paediatric Department in Kyiv University professor V.E Chernov was a gifted scientist and leather. In his iecturcs he demonstrated different methods of examination on patients and taught his students how to use laboratory investigations in the diagnosis. Prof. V.E. Chernov devoted hts researches to study chlorosis and bronchoectatic diseases, as well as to fight against such childhood infectious diseases as measles, scarlet fever and diphtheria; he was the first physician who used antidiphtheric serum for treating children. All his activity was directed on propagating paediatric science in Ukraine, education of paediatricians, creation of the Kyiv's paediatric school. Professors l,V, Troitsky, S.K. Gogitidze, E L. Sklovsky worked under his leadership,

Jn 1892 the Department of Paediatrics was organized in Khaikiv University, This Department was headed by Prof. M.D. Ponomarev, who followed the principles of integration of theoretical knowledge into practical activity of students with ill children. His scientific work was devoted to infectious diseases (measles, scarlet fever, chicketipox). M.D, Ponomarev was the author of the monograph "Diseases of newborns". Later L,V, Troitsky took over as the head of the Paediatric Department in the University of Kharkiv. He was a highly educated scientist-paediatrician, an author of 150 scientific works, whose biggest part was devoted to pharmacology for children, prophylactics of diseases, hygiene of children. Professors I.V. Troitsky and M.D, Ponomarev were the founders of the Kharkiv's paediatric school,

In 1905 the Department of Paediatrics was organized in Novorosiysfcy University (Odessa). Prof. V.P. Jakubovich was the first head of this Department. His scientific work was devoted to childhood physiology and pathology. V.P. Jakubovich is the aulhor of "The manual on the diagnosis of children and methods of examination of children "

A vaiuahle contribution to science was made by a representative of the Kharkiv's school Prof. V A Belousov. He had more than 70 scicntific publications, which were devoted to different problems of paediatrics: etiology of toxic syndrome in infants, treatment of tuberculous meningitis, methods of diagnosing different diseases in children. He is an author of 2 manuals for students of mcdical institutes and medical colleges.

Prof. A.L Skrotsky is a representative of the Odesa's school. He headed a children's hospital, which had good equipment, laboratories, rooms and a library. A.L Skrotsky was the first who used serum prophylaxis for scarlet fever and measles He wrote more than 60 scientific works, which were devoted lo problems of rheumatic fever, tuberculosis, childhood infectious diseases (diphtheria, scarlet fever)

Prof. S.L Ignatov made valuable contributions to developing paediatrics in the west region of Ukraine He headed the Department of Paediatrics in Lviv Institute, took an active part in the organization of the Pacdialrie Faculty and was its first dean. His researches were devoted to Ihe physiology and pathoiogy of digestion, pathology of newborns, pharmacotherapy oT children.

Prof L,L Pinktlslem was a disciple or Prof. V,E. Chernov, he headed the Department of Childhood Di&cases in Kyiv MediCa! Institute, LJ- Fink Ostein was an author of more than 60 scientific works, whieh were devoted to the dietetics of infants, disorders of nutrition, pneumonia, tuberculosis

Prof. E.N. Khokhol was the head of the Department of Childhood Diseases of Kyiv Medical Institute and later headed the Department of Hospital Paediatrics, He wrote SO scientific works, most of them were devoted to the physiology and pathology of children of young age, feeding of children, diseases of the digestive organs, tuberculosis,

P,N. Gudzenko wag at the head of the Department of Faculty Paediatrics. He was an author of more than 150 scientific works, including S monographs, which were devoted to basic investigations of tuberculosis, intestinal and staphylococcus infections in children, P.N. Gudzenko and LM, Rudncv issued the textbook "Childhood Diseases", which was reprinted many times. "The Rational heeding of Children", "Prescriptions" book of reference"1) exerted a profound influence on training of highly skilled paediatricians.

A significant contribution to science in Ukraine was made by Prof. l.M. Rudncv, who worked in the west of Ukraine. He headed the Department ofFaculiy Paediatrics of Lviv Mcdica! Institute. later the Department of Faculty and Hospital Paediatrics of Kyiv Mcdical Inslitute, The main scientific works, including a monograph, were devoted lo crucial problems of paediatrics: diagnosis and treatment of rheumatic fever and allergic diseases, problems of childhood cardiology (congenital and acquired).

Health is a complex phenomenon. As defined by the World Health Organization (WHO), it is “a state of complete physical, mental, and social well-being and not merely the absence of disease”.

Public health is measured by the following bases parameters: demographic, morbidity  and  physical development.

Demographical  parameters of the social medicine and the organization of public health services were borrowed in  the  demography.

The demography is a science about  population in its social development. The demography studies is the following bases processes which occur to the population: statistics,  mechanical movement, natural movement.

The statistics of the population displays its  number, sexual and age structure, professional structure, a level of erudition, a level of a material well-being, etc. for the certain period of time. All these characteristics as it has been said above  the health of people.

In 2000 the population of a planet has achieved 6 billion, from them 1 billion lives in the developed  countries of Europe, Northern America and in Japan (so-called “ gold billion ”), other  5 billions - mostly in the undeveloped countries . Most  of people   live in China - 1,2 billion, then  in  India (1billion) , Ukraine enters to the first thirties of  the most populated  status  of the world - 49,1 million inhabitants (2000.).

By age  parameters  the population of Ukraine was distributed  in  the  following   way : 0-14 years - 24,9 %; 15-49 years - 48,7 %; 50 years and senior - 26,4 %.

If in age structure of the population  children  (0-14)  prevail of   people of 50 years and senior,   such   type of age structure of the population is called progressive, if on the contrary - regressive.

If the  number   of children and people of  the  nature  age is approximately identical, it is stationary type of age structure of the population.

The specific part of old men steadily grows, that a number of essential social - medical consequences - increase of disease and mortality rate and need in medical care.

The second aspect of demographic studying of the population is its movement. Movement can be mechanical and natural.

Vital movement  of the population is the process that includes  birth rate, mortality rate and a natural increase in population. The parameter of the general birth of the population is determined   in  the  following   way :

General birth  rate of the population, ‰	=	The number of people which were born alive during one year	×1000
		Mid-annual population

As a rule, this parameter is determined on 1000 people that enable to compare these parameters in space and time. It is necessary to take into account the following definition of concept   of "live-birth".

Criteria "live-birth"  in our country and  requirements the WHO’s are different.

In our country the newborn  is considered alive if it  was born not earlier than 28 weeks of pregnancy, has weight   of not   less  than  1000 gram’s, growth not smaller  than 35 sm and has palpitation and breath.  According to the criteria of WHO’s - 22 weeks of pregnancy, 450 gram’s, presence of a heart beat only.

The infant which  was born and does not correspond to these criteria, is considered as stillbirth.

The general  mortality  rate is determined  in  this  way:

General mortality rate of the population, ‰	=	The number died during one year	×1000
		Mid-annual population

It is possible to put numbers of died and people of the certain age in numerator  and a  denominator  to get a  parameter of age mortality rate.

The special attention is given   to the mortality rate of infant on the first year of  life (infant mortality rate).

In table 1.1, dynamics of parameters of birth and mortality in Ukraine for last years is shown .

Table 1.1

Dynamics of birth and mortality in Ukraine for 1990-1999 (on 1000 population)

Year	General birth	General mortality	Vital  gain
1990	12,7	12,1	0,6
1991	12,5	12,9	-0,8
1992	11,4	13,4	-2,0
1993	10,7	14,2	-3,5
1994	10,0	14,7	-4,7
1995	9,6	15,4	-5,8
1996	9,1	15,2	-6,1
1997	8,7	14,9	-6,2
1998	8,3	14,3	-6,0
1999	7,8	14,8	-7,0

The  vital  gain is a difference between  the birth  rate and mortality  rate. As we see from table 1.2, the  vital gain  in Ukraine from 1991 became negative and its  number quickly grows. It   is  a  result of conditions of  people’s  life  during  these years, reduction of availability of medical care for poor layers of the population and deterioration of this care.

Mortality testifies the influence of the conditions of people’s life on death among rural people and cities dwellers. So, in 1999  mortality  in city was 13,0 ‰,  village - 18,7 ‰, vital gain  -5,9 -9,3 ‰.

Mortality of children under the age of one year is called as infant mortality. It is determined in the following way:

Infant mortality rate, ‰	=	Number of infant which were born alive and under the ge of one year	×1000
		The common number of infant  which were born alive for a year

It is more than half of died infant on the first year of life die from  the conditions which  have arisen  during birth and  anomalies. The third and fourth places are occupied  by  diseases of respiratory system  (which some decades before pays to itself were on the first place), accidents,  poisoning and traumas - the reasons, being an attribute of the newest time, are caused by extremely those changes which occur  due  to  conditions and a way of  infant life.

On the first year of a life infant die non-uniformly. Most intensively  during  the first week of a life, then during  the first month. From all infant who die during the  first year, not less than 50 %  of  them die during  the first week of a life (early neonatal  mortality rate) and 60 % during the first month of  life (neonatal  mortality).

Neonatal  mortality  rate, ‰	=	Number of infant which were born alive and have died on the first month of a life	×1000
		The common number of infant which were born alive during one year

Early neonatal mortality rate, ‰	=	The  number of infant which were born alive and have died in the first 6 days	×1000
		The  common number of infant which were born alive during one year

Stillbirth  rate, ‰	=	The number of infant which were born dead after 28 weeks of pregnancy	×1000
		The number of infant which were born alive and dead during one year

The sum of early infant mortality rate and  stillbirth makes the perinatal mortality rate. The integrated demographic parameter is middle duration of an expected life.

This parameter means that  number of years, which will be lived on average by the representative of generation,  which was born in the certain year (for example, in 2000yr.) provided that this generation will die out with the same intensity  this year.

In 2000 middle duration of an expected life in the world has made 67 years, including  the  developing countries - 50-52 years and in the developed countries - 75-82 years. In Ukraine this year middle duration of an expected life has made 67 years, it means that it  was at the  average -planetary level.

So, the demographic situation in Ukraine for this moment is unsatisfactory. The coordinated efforts of the state,  public and the  whole  population, directed on  the increase of birth rate and reduction of mortality rate of people are necessary.

The important parameter of health  of the population is  morbidity. It is studied on three sources: according to the visits of patients to medical establishments, data of preventive services and   the data on the reasons of death.

According to the  first  source  acute diseases are  revealed  according to the data of  preventive services  - chronic diseases, according to the data of the reasons of death - diseases, unknown  for persons at human life (first of all traumas), and also those diseases, which diagnosis  have not been established and specified during of pathologo-anatomy survey.

Morbidity  is determined on  the following parameters:

General  morbidity rate, ‰	=	The number of all diseases registered on extent of year	×1000
		Mid-annual population

Primary morbidity  rate, ‰	=	The number of diseases which for the first time has arisen in the current yea	×1000
		Mid-annual population

Morbidity during    preventive services, %	=	The number of the diseases  revealed during routine  examination	×1000
		The number of examined

In-patient  morbidity rate, ‰	=	The number of  in-patient	×1000
		Mid-annual population

All these parameters can take into account all diseases or some of them then in numerator corresponding numbers are substituted. Except for all diseases acute infectious diseases and the important not epidemic diseases (cancer, a tuberculosis, venereal diseases, etc.) which are of great importance for an estimation of public health  are often separated.

The primary medical document in which all diseases are registered is the medical card of the outpatient (F 025/about). For registration of hospitalized patients by the primary medical document there is a medical patient s card of the inpatient (f 003/a).

For the analysis of disease intermediate medical documents, which are based on primary:

- The statistical coupon for registration of the specified (final) diagnoses (f 025-2/a);

- A control patient’s card   of dispensary supervision (f 030-/0);

- The  emergent  report  about  acute infectious disease, occupational disease and unusual allergic reaction (f 057/0);

- A statistical patient’s card of the patient left a hospital (f 066/0);

- The certificate  of invalidity and other.

The world statistics does not know the parameters of morbidity. They  absent  in annual epidemiological directories the WHO. The matter is that our country,  unlike   many countries of the Western Europe and Northern America, has a long history of registration of diseases  according  to  people  is  visits  of  medical establishments. This practice has been established by  the founders of public medicine in Ukraine and Russia in the middle of XIX century.

Morbidity  has been used not only as a parameter of health, diseases of the population, and  as the basis for planning development of a network of preventive and treatment-and-prophylactic establishments .

So, registration of morbidity is historical property of domestic system of medical care which should be saved and developed.  It should be emphasiz, as in the period of so-called pseudo-market transformations in the country, someone calls the population to stop registration  of the current disease on the ground that  does not exist in the modern developed countries which mostly are guided by a parameter of death rate.

In particular it is  important that   there is a primary and general morbidity  of the population. Primary takes into account only those cases of diseases which are revealed for the first time in  life and are registered in that year for which primary disease is determined.

General takes into account all cases of diseases which have been registered in one year for which disease is determined, it means  that  disease can be revealed and in previous year, also  now proves to be true.

Family System

1.     Define the term "family".

2.     Discuss theoretical foundations of family nursing: system's theory, nursing theories, and social science theories.

3.     Describe components of comprehensive family assessment, including techniques and tools.

4.     Describe different types of family structures.

5.     Summarize cultural, social, and economic influences on the family.

6.     Identify indicators of healthy and dysfunctional families.

7.     Discuss the role of the nurse in supporting parents and fostering positive child-rearing practices relative to parenting tasks (related to developmental stages), parenting styles, socialization of children, discipline, and special parenting situations.

8.     Use critical thinking and nursing process to plan effective nursing care for the family system.

During the 20th century, amazing progress has been made in scientific and technological fields. The genetic code has been discovered, people are living longer than ever before, and very low birth weight infants have survived. However, the status of children and their health has not kept pace with these accomplishments. For example, one in two children live in a single parent family at some point in their childhood; one in three is a year or more behind in school; one in eight is born to a teenage mother; and one in 60 sees his or her parents divorce in any given year (Children's Defense Fund, 2000). On the positive side, child health care has changed from a strictly curative approach to a disease prevention and health promotion model. The role of the pediatric nurse has expanded from child caretaker to child advocate. Today, pediatric nursing focuses on preventing acute and chronic illness while promoting normal growth and development. This focus requires a broad knowledge base consisting of an understanding of the culture at large, a host of health and illness issues, and a wide range of clinical competencies.

This chapter begins with an overview of social changes as they affect children. It describes the status of children's health, their health problems, and their care. The focus of the chapter then turns to a discussion of the roles of pediatric nurses and concludes with a discussion of differentiated practice roles and advanced practice.

Pediatric Nursing in a Changing Society

Societal Trends Impacting Children

Children are members of families, communities, populations, and overall society, which shape the context, experiences, and opportunities of their lives. Their well-being is inextricably linked to the well-being of their families, communities, and the society in which they live. In a world that is continually changing, emergent societal trends have profound effects on the environment surrounding children and their families, and now pose formidable challenges to children, their families, and their health. These trends include

§ immigration,

§ poverty,

§ homelessness,

§ migrant farm workers,

§ and violence.

Immigration

Currently in the United States, one in five children under the age of 18 (14 million) is either an immigrant or a member of an immigrant family (Children's Defense Fund, 2000). The reasons that people are coming to the United States are many: freedom, economic opportunity, political asylum, graduate education, specialized medical care, or to give birth to an infant in the United States, thereby granting the child automatic citizenship. Sometimes these children are welcomed into well-functioning communities, and many become valuable members of society. However, they face many challenges related to health status and education, because they often have difficulty speaking English. This lack of skill in English has a direct impact upon their educational attainment, economic viability, and ability to enter the mainstream of U.S. society.

With each new wave of immigrants comes debate about whether they contribute to the economy or create a drain on public and private resources. Concerns also include perceived threats to the public health and order from infectious diseases, increased crime, and diverse social mores (American Academy of Pediatrics [AAP] Committee on Community Health Services, 1997). These debates have raised the issue of eligibility of immigrants for health, educational, and social services. Some have argued that this group should not be entitled to any local, state, or federal benefits. States that have a large number of immigrants (California, Texas, Florida) have proposed removing eligibility for these services. Opponents of these efforts counter that denying children access to services is unwise public policy. For example, in health care, denial of preventive services such as prenatal and dental care and immunizations eventually results in spiraling costs for emergency medical services (for which immigrants are eligible).

The health status of immigrant children can be compromised due to intestinal parasites, poor diets, dental problems, tuberculosis, hepatitis A, hepatitis B (particularly in those children from Southeast Asia), and other conditions originating in their country of origin (Worley, Worley, & Kumar, 2000). They are also at risk because of significant language, cultural, financial, and legal barriers to receiving health care. Their families often delay seeking care for minor conditions until they become more serious. Another factor affecting their underutilization of health services is the possibility that family members may have different immigration statuses. When one member is an illegal (undocumented) immigrant, the entire family may limit access to care for fear of an investigation (AAP, 1997).

The immigrant population's access to health care services also affects their psychological well-being. For many children and their families, the immigration process poses unique stresses. Individuals may be torn by conflicting social and cultural demands while trying to adapt to an unfamiliar environment. Other stresses include differences between social and economic status in their country of origin and the United States, separation from support systems, and, for illegal immigrants, fear of deportation (Hulewat, 1996).

Poverty

Families are classified as being in poverty if their annual income falls below official poverty thresholds (Table 1-2). In 1999, the poverty rate for all Americans was 11.8%, the lowest rate since 1979. For children under age 18, the poverty rate was 16.9%, again the lowest rate since 1979 (U.S. Census Bureau, 2000). Although the rates have improved, one in five children still lives in poverty. Rates of poverty, including childhood poverty, are highest for minority groups. However, the majority of poor children are white because whites are the largest population group in the United States (Children's Defense Fund, 2000).

Family structure has an important bearing on child poverty. Poverty rates for children in married couple families are much lower than for those in families headed by a single parent. The explanation for this fact is that when both spouses are present, there are two potential (and, frequently, actual) breadwinners. Almost half of all poor children live in single parent households. The risk of poverty in these households is high for several reasons, including low wages for women, the low educational attainment of many single mothers, and low rates and levels of child support from fathers (McLoyd, 1998).

Several factors are at the root of child poverty. Slow growth in wages, the rising inequality in earnings, significant loss of low-skill, high-wage jobs due to a decline in manufacturing industries, and workers' lack of education and skills account for much of the increase in child poverty in recent years. In the past two decades, average earnings have not grown much. At the same time, there has been an increase in the inequality of earnings among workers. Today, the top 5% of American families make nearly 20 times the average income of the bottom 20% of families (Betson & Michael, 1997). This gap is the widest it has been in the 52 years for which annual income statistics exist (Children's Defense Fund, 2000). Educational level is an indicator of market skills that yield higher earnings. The education of the adults in the family is critical for die family income. As education rises, the number of adults who are not in the labor force and who experience a period of unemployment during the year declines dramatically.

Family income also has significant effects on the well-being of children and adolescents. Poor children are at greatest risk for the physical, social, and emotional effects of living in poverty (Sidel, 1996) (Figure 1-1). Some of the effects of living in poverty are listed in Figure 1-2. Compared with nonpoor children, poor children experience diminished physical health. They have higher than average rates of death and illness from almost all causes except suicide and motor vehicle accidents, which are most common among white, nonpoor children (Behrman, 1996). They also have a higher prevalence of illnesses such as asthma, respiratory infections, anemia, and gastrointestinal infections. Infant mortality rate is closely linked to poverty, and children born to poor families are at great risk of infant death (Annie Casey Foundation, 2000). Deficits in children's nutritional status are associated with poverty. Stunted growth (low height for age), a measure of nutritional status, is more prevalent among poor than nonpoor children (Brooks-Gunn & Duncan, 1997).

Poverty also affects children's cognitive abilities and achievement. A child's poverty status at 3 years of age predicts the child's IQ at age 5, and persistent poverty has more adverse effects on a child's cognitive functioning than transitory poverty. In addition, children from lower socioeconomic status perform less well than nonpoor children and middle class children on test scores, grade retention, course failures, and placement in special education, high school graduation rates, high school drop-out rates, and the completed numbers of years of schooling. School achievement also declines with the time spent in poverty, and the chance a child will be retained in a grade or placed in special education increases 2%-3% for every year that the child lives in poverty. In fact, long-term poverty is associated with deficits in verbal, mathematical, and reading skills that are two to three times greater than those associated with current poverty status. Poverty also affects a child depending on when, during the child's life, poverty is experienced; poverty during the first five years of life will affect the completed years of schooling more than if poverty occurs during middle childhood and adolescence (Brooks-Gunn & Duncan, 1997; McLoyd, 1998).

There is a higher prevalence of emotional and behavioral problems (e.g., externalizing, internalizing) among poor and low socioeconomic status children and adolescents than among children from families where there is higher income. The externalizing behavior problems include disobedience, fighting, difficulty getting along with others, and impulsivity, which become more prevalent the longer the children live in poverty. The internalizing behavior problems include anxiety, sadness-depression, and dependency (Brooks-Gunn & Duncan 1997; McLoyd, 1998).

Homelessness

An increasing number of children and families in all communities in the United States are homeless. Traditionally, the homeless population has been composed of single adults, mostly men. However, families with children are the fastest growing segment of the homeless population, accounting for more than one-third (Weinreb, Goldberg, Bassuk, & Perloff, 1998). Today, homeless families generally are headed by women with two or three children. Although there is disagreement concerning the exact number of homeless persons, there is a consensus that the numbers are large and continuing to grow.

Homelessness was initially a phenomenon of large urban areas but more recently has swept across the nation, affecting midsize cities as well as suburban and rural areas. Contributing to the rise of homelessness in midsize cities is the migration of disadvantaged families from large urban settings to smaller towns and cities in search of a safer environment and a better life for their children. The homeless population is disproportionately represented by African-Americans (U.S. Department of Housing and Urban Development [HUD], 1999).

Several societal problems contribute to the increasing rate of homelessness among American families, including the following (AAP, 1996):

• Increases in poverty

• Lack of affordable housing

• Decreases in availability of rent subsidies

• Unemployment, especially among those who have held only marginal jobs

• Personal crises such as divorce, domestic violence, and substance abuse

• Cutbacks in public welfare programs

• Deinstitutionalization of the mentally ill

Having been abused or neglected by a household member as a child is a risk factor for homelessness. Another factor is living in a foster home, a group home, or other out-of-home placement as a child, such as a residential treatment center or juvenile detention (HUD, 1999).

Homeless children experience the specific health effects directly related to homelessness, as well as the effects of poverty, the umbrella issue of homelessness. The most common physical health problems include upper respiratory, ear, and skin infections, gastrointestinal disorders (diarrhea), and infestations (scabies, lice) (AAP, 1996). Compared with housed children, homeless youth have a higher incidence of chronic health problems such as asthma, anemia, visual and neurological deficits, eczema, and trauma-related injuries (Weinreb, et al., 1998). The conditions in many private and public shelters place children at risk of lead poisoning and other environmental hazards. Many health problems may predate shelter entry, including crowding in doubled-up housing situations, or exposure to the elements and lack of sanitary facilities in public places. Access to health care, especially preventive care (immunizations, well child services), is impaired for homeless families. Because caregivers are struggling to meet the family's basic demands for food and shelter, health becomes a lower priority. When they do seek health care, they are more likely to use emergency services for preventive and sick care than housed families (Ensign & Santelli, 1998).

To date, the struggle to provide adequate food and nutrition to homeless families has proven to be an over-whelming task. Homeless families have little access to cooking facilities, and families living in shelters report having less access to food than they previously had, with more children going hungry or eating once per day. The children are especially at risk for malnutrition. Inadequate benefits and difficulties in accessing food and entitlements are the major mediators of hunger and poor nutrition in the homeless. The vast majority of homeless families are headed by women who rely on Aid to Families with Dependent Children (AFDC) as their primary source of income, and problems are often compounded by failure to receive benefits to which they are entitled, erroneous case closings, and benefit reductions. Loss of these benefits has been shown to have directly contributed to loss of housing. In addition, the children of these women who are eligible to receive benefits under the federally funded Special Supplemental Food Program for Women, Infants, and Children (WIC) often do not receive benefits. Families with limited resources are often left with no other alternative than emergency food assistance facilities, and in many cities, such facilities have reported having to turn away people in need because of lack of resources.

Psychological problems identified most often among homeless children include depression, anxiety, and behavioral problems. Homeless children are more likely to exhibit poor attention span, trouble sleeping, delayed speech, aggressive behaviors, shyness, and withdrawal (HUD, 1999). Poor school attendance resulting from family transience is also a serious concern. Enrollment in school may be delayed lor weeks because of lack of immunizations and records.

Nurses, together with other service providers such as physicians, psychologists, and teachers can increase the local and national awareness of the effects of homelessness on children and bring political attention to the underlying causes of widespread poverty.

Nurses are in a unique position to advocate for homeless children within the social services system concerning access to health care, mental health care, and essential housing, nutritional, and educational needs. Nurses can also advocate for making prenatal care available to homeless mothers. Lack of such care places unborn homeless children at risk of low birth weight, subsequent health problems, chronic diseases, and cognitive and developmental problems. In addition, health problems are associated with psychological problems, classroom performance, and drop-out rates, all of which, gone unaddressed, can seriously compromise the future of homeless children.

Migrant Farm Workers

Migrant and seasonal farm workers constitute a major portion of the labor force in the U.S. agricultural industry, and children make up almost one-fourth of all farm labor in the United States (Gwyther & Jenkins, 1998). The majority of adult workers are married and have children. Children of migrant workers constitute a population at high risk for many health problems because of their living conditions and limited access to health care (Wilson, Wold, Spencer, & Pittman, 2000). They suffer from many of the problems seen in homeless children: gastroenteritis, dental caries, inadequate immunizations, intestinal parasites, infestations, skin infections, pesticide exposure, and infectious diseases (AAP, 1995; Bechtel, 1998; Wilson, Pittman, Wold, 2000).

Agriculture surpasses mining and construction as the most hazardous occupation in the United States. Children of migrant families often are involved in farm work and, being physically weaker and less experienced with farm operations and machinery than their adult counterparts, are more at risk for injury. Each year some 24,000 children working in agriculture experience nonfatal trauma, and nearly 300 children die, primarily as a result of accidents involving farm machinery (Gwyther & Jenkins, 1998). Children are also at risk for pesticide exposure both in the fields where they work and play, and at home, where they can be exposed through pesticide drift. Although research on childhood exposures is limited, it is believed that children are at greater risk than adults for pesticide-related illnesses because of their higher metabolism, increased body surface area, and potential for long-term chemical exposure. Long-term exposure to pesticides has been implicated in several types of cancer, birth defects, sterility, spontaneous abortion, and cognitive deficits (Gwyther & Jenkins, 1998).

The conditions of migrant life place families, and especially children, at increased risk for contracting a variety of viral, bacterial, and fungal infections, including rabies, anthrax, Rocky Mountain spotted fever, tetanus, plague, typhoid, tuberculosis, HIV, and hepatitis. Crowded, unsanitary living conditions create the opportunity for rapid disease spread. Lack of access to health care services results in a high incidence of preventable disease in the migrant population. The high incidence of tuberculosis in this population has been linked with high rates of infection in migrant's countries of origin, substandard housing and overcrowding, poor baseline health status, malnutrition, and lack of access to preventive health care services. There are high rates of HIV infection in the migrant population. Specifically, the number of women with HIV is rising, putting children at risk for contracting the virus in utero or at birth. Migrant women are particularly at risk because of their lack of access to educational counseling, prevention, and treatment services.

Migrant children are frequently at risk nutritionally. Migrant communities often have limited choices for the purchase of food, and their low incomes may preclude them from receiving adequate amounts of nourishment. Furthermore, they often lack the means for properly storing or preparing foods (e.g., lack of refrigeration, impotable water). Though many are eligible for supplementation through programs such as WIC and food stamps, many do not participate because of multiple barriers to these services.

Iron-deficiency anemia is a common diagnosis reported by clinics serving migrant children. Child obesity is also raised as a major clinical concern given the link of obesity to diabetes and hypertension in adult Hispanics (Gwyther & Jenkins, 1998).

The health status of these children is further threatened because of barriers to health care such as family mobility, financial constraints, and legal (fear of immigration penalties), language, and cultural barriers. The mobility of the families impedes adequate follow-up and referral for health problems for the children. Financial constraints stemming from being in a low-wage work group, being paid according to how much is harvested, and lack of health insurance hinder migrant farm workers from seeking health care for their children. Language is a major cultural barrier for Hispanic workers who speak little English and for health care providers who do not speak Spanish (Wilson, et al, 2000).

There is a critical need for nurses working with migrants to advocate for the health of migrant children. Nurses must not only act as health educators for migrant families, but they must also aid them in negotiating a complex and dynamic health care system that is unfamiliar. It is equally important that those familiar with the lives of migrant families educate the public and its leaders about the significant contributions of these workers to the economy. Further, the research literature on migrant children has many critical gaps. Basic information on the number and distribution of migrant children in the United States, prevalence rates for common causes of morbidity and mortality in this group, and measures of the impact of the migrant health system on child health status are lacking. Nurses and other clinicians are in key positions to fill these gaps and thus expand the knowledge base from which further target interventions may be developed (Gwyther & Jenkins, 1998).

Violence 

As the 20th century ended, violence by and against children declined. Yet it still occurs. Today children and adolescents are more likely to be the victims of violent crime than the offenders. Violent crimes include murder, forcible rape, robbery, and aggravated assault. Although the number of children injured by violent crime has declined significantly, the level of violence in the U.S. surpasses those in any other developed country. For example, the rate of death by homicide among U.S. males aged 15 to 24 is 10 times higher than that in Canada and 28 times higher than that in France or Germany (Danielsen, 1998).

An examination of other statistics on juvenile violence is alarming. One statistical trend to consider is the numbers of juveniles arrested for violent crimes. In 1999, 5% of juvenile arrests were for violent crimes. Comparing racial groups indicates that, although African-American youths accounted for 15% of the juvenile population, they were involved in more than 50% of arrests for murder and rape. Another trend to examine is juveniles who are victims of homicide, which indicates a positive trend in 1998. The homicide rate fell an estimated 14%, the fifth straight year of decline. However, it still remains a major cause of death among 10-19-year-olds and the leading cause of death for black males 15-24 years of age (Snyder & Sickmund, 1999).

In recent years, injuries and deaths among children and adolescents from firearms, specifically handguns, have increased. In 1998, firearms were involved in 85% of all homicides, and 60% of all suicides in adolescents were committed with a firearm (Snyder, 1999). The presence of a gun in the home increases the risk of homicide, suicide, and injury to family and friends (Laraque, Spivak, & Bull, 2001). Recent evidence suggests that the majority of firearms used in suicide attempts and accidental shootings are stored in the home of the victim or in the home of a relative or friend (Grossman, Reay, & Baker, 1999). Although, in recent years, a great deal of attention has understandably been focused on tragic school shootings and homicides, school violence rates are declining overall (Children's Defense Fund, 2000). In fact, school-associated violent deaths are rare occurrences. Students are much more likely to be the victims of violent crimes away from school than at school (Snyder & Sickmund, 1999). Even though violent crimes in schools have decreased, physical fights, thefts, weapon carrying, teacher victimization, and fear of school environments have increased. The most effective strategies for reducing violence in schools involve coordination among education, law enforcement, social service, and mental health systems.

Nurses must become involved in responding to the increases in firearm-related deaths in children by encouraging gun control legislation. Laws to hold gun owners responsible for how their guns are stored in the event a child is injured may lead to decreases in rates of accidental firearm deaths. A number of gun design options have been proposed to decrease the likelihood of unintentional injury. These include trigger locks, lock boxes, personalized safety mechanisms, and trigger pressures that are too high for young children. However, it is not conclusive if these measures will decrease injuries and deaths (AAP, 2000). Until guns are no longer accessible to children, education should inform all adults about gun hazards and safety. Nurses can be involved in this education process by teaching families about firearm safety.

Home:

1. Communicate the risks of keeping a firearm in the home.

2. Advise that it's safest not to keep a firearm in the home.

3. Review safe methods of storage.

4. Educate caregivers to teach children not to touch or handle firearms.

5. Explain that handguns and semiautomatic weapons pose the greatest risk of intentional and unintentional injury for children. The reason for this is because they are more often stored unsafely and are more often involved in serious injuries and deaths.

6. Explain to caregivers that it is easier to keep guns away from adolescents than to keep adolescents away from guns, which are often glamorized in the media. Caregivers should watch for signs of depression or changes in behavior since teens feeling this way are at increased risk for suicide.

School:

1. Incorporate violence prevention programs in school curricula at an early age, including firearm violence. Examples of such programs include conflict resolution, alternatives to violence, anger management, risk awareness, and coping skills.

2. Have after-school programs for youths, and obtain community support for such programs.

Community:

1. In an effort to reduce the romaticization of guns in the popular media, urge the development of violence-free programming among child health and education advocates, and the television and motion picture industries.

2. Support legislation that regulates the manufacture and importation of classes of guns, such as handguns and assault weapons, and that requires background checks for weapons purchased at gun shows.

3. Improve playgrounds and parks to make safe play areas for children.

Current Status of Children's Health

In January 2000, the U.S. Department of Health and Human Services (DHHS) launched Healthy People 2010: National Health Promotion and Disease Prevention Objectives, a comprehensive, nationwide health promotion and disease prevention agenda. The document contains 28 focus areas and 467 objectives designed to serve as a guide for improving the health of all people in the United States during the first decade of the 21st century (DHHS, 2000). Most of the objectives target the lifestyle choices and environmental conditions that cause 70% of premature deaths in this country. The overarching goals are to increase the quality and years of healthy life, and eliminate health disparities between ethnic groups. The Healthy People framework allows governments to focus resources in the right place. A variety of indicators reflect the health status of Americans. Health status can be measured by birth and death rates, life expectancy, morbidity from specific diseases, and many other factors. Box 1-2 lists the 10 leading health indicators.

Because Healthy People (HP) 2010 emphasizes health promotion and prevention, almost all of it pertains to nursing. Health promotion and education are central to nursing practice; therefore, nurses need to develop an awareness of the HP 2010 program and incorporate it as a benchmark for their interventions. Nurses are well educated and prepared to work with individuals, families, and communities to meet the special needs of vulnerable populations and to eliminate health disparities. The public, by and large, trusts nurses and is receptive to their teaching and intervention. Nurses can use their unique position to help meet the goals of HP 2010 and, in doing so, can improve the health of all Americans: adults, children, and adolescents.

Infant Mortality

Infant mortality is an important measure of a nations health and a worldwide indicator of health status. The infant mortality rate (IMR) is the number of infant deaths during the first year of life per 1,000 live births. IMR has shown an exponential decline in the 20th century from 200 per 1,000 live births in 1900 to a record low of 7.2 per 1,000 live births in 1998 (Martin, Smith, Matthews, & Ventura, 1999). Figure 1-3 demonstrates IMR by race from 1915 to 1998. The low overall IMR in 1998 was the same as the record low reported in 1997. It is the first time that there has been no improvement in this measure in nearly four decades. The IMR in 1998 for white infants was 6.0 and for black infants, 14.3—a figure more than twice the rate for white infants. This racial difference is a major national concern because the ratio of black to white infant deaths has remained unchanged from 1990 to 1998. One reason for this disparity in IMR is the high rate of low birth weight (LBW) infants born to minority mothers, which suggests a decrease in the overall health status or health care access of these women. IMRs were also higher for infants whose mothers were teenagers or 40 years of age or older, did not complete high school, were unmarried, began prenatal care after the first trimester of pregnancy, or smoked during pregnancy (Guyer, Hoyert, Martin, Ventura, MacDorman, & Strobino, 1999).

The upward trend in infant survival has been due to improvements in perinatal care, such as high frequency ventilation, use of surfactant therapy for the neonate, and improved public education efforts (Figure 1-4). In spite of these improvements in infant mortality, the United States ranks 23 among the 24 nations that have the lowest infant mortality rates (Department of Economic and Social Affairs, 1999). The unfavorable birth weight distribution in this country continues to be one reason for its unenviable IMR, and the proportion of the smallest and most vulnerable infants increased during the 1990s. The IMR target goal for the year 2010 is 4.5 deaths per 1,000 live births. To achieve further reductions in infant mortality, the public health community, health care providers, and individuals must focus on modifying the behaviors, lifestyles, and conditions that affect birth outcomes. These include smoking, substance abuse, poor nutrition, lack of prenatal care, medical problems, chronic illness, and other psychosocial problems (e.g., stress, domestic violence). Additionally, the financial, educational, social, and logistic barriers to receiving prenatal care in the first trimester for all women must be removed.

Low Birth Weight

One reason for the racial disparity in IMRs and the poor ranking of the United States is the high rate of LBW (weight of less than 2,500 grams, or 5 pounds, 8 ounces at birth). The rate of LBW was 7.6% in 1998, up from 7.5% in 1997. This percentage has been increasing fairly steadily from the low of 6.7% reported in 1984 (Guyer, et al, 1999). Infants with a LBW have a six times higher risk of death during their first year of life. Those weighing less than 1,500 grams have an 89 times higher risk of death than do babies having a normal birth weight. Figure 1-5 shows trends in LBW since 1950 for white and black infants, since 1970 for American Indians, and since 1980 for infants born to women of Hispanic and Asian/Pacific Island descent. The LBW rate is much higher for black infants than for any other group for all years for which data are shown. The reasons for this higher rate are the same as for high IMR in this group.

Figure 1-5 also shows an increase between 1990 and 1999 in the LBW rate for infants born to white, American Indian, and Asian/Pacific Islander women. The increase among white women has been shown to be attributable to an increase in multiple births (Guyer, Freedman, Strobino, & Sondik, 2000). The increase in multiple births has been associated with an increase in assisted reproductive technologies such as in vitro fertilization and, to a lesser extent, with the rising age of childbearing. If this increase continues, it is unlikely that there will be much improvement in the position of the nation in infant mortality relative to other developed countries (Guyer, et al., 2000).

Immunization Rates

The reduction in incidence of vaccine-preventable diseases is one of the most significant public health achievements of the 20th century. The global eradication of smallpox in 1977 is an illustration of this success (DHHS, 1999). Not only are immunized individuals themselves protected from developing a potentially serious illness, but, also, if enough of the population is immunized, transmission of the disease in a community may be interrupted. This concept is known as herd immunity, i.e., the reduction of the number of persons susceptible to a communicable disease by immunization, thus preventing the spread of disease in epidemic proportions. Immunization rates should be at least 80% to provide herd immunity. The increasing number of safe and effective vaccines has improved the health status of millions of U.S. children. In 1999, the highest rates of childhood immunization were achieved. The overall rate for children of preschool age increased to a record of 80%. Three vaccines—polio, measles, and Haemophilus influenza type b (Hib)—had a coverage rate at or above 90% (Centers for Disease Control, National Center for Health Statistics, 1999). Figure 1-6 illustrates the childhood vaccination coverage for 1999 by race. Rates are for 19-35-month-old children who have received at least four doses of DTP (diptheria, tetanus, pertussis), three polio, one MMR (measles, mumps, rubella), three Hib, and three hepatitis B. The Healthy People 2010 target is 90% coverage for all recommended vaccines in all populations.

Although immunization coverage is high in almost all states, areas within each state and within major cities persist where substantial numbers of underimmunized children reside. Significant segments of this population are minority children. These areas are of great concern because there is a potential for outbreaks and epidemics of vaccine-preventable diseases. Another challenge is the emergence of a vocal movement resisting childhood immunization requirements. All 50 states have immunization requirements for entrance into school; however, some groups are seeking changes in these state laws. They want to enable caregivers to choose how and if their children are vaccinated. Exemptions are allowed from immunization requirements for medical reasons in all states and for religious reasons in 48 states, and 15 states allow exemptions for philosophical reasons (National Vaccine Advisory Committee, 1998). Children who are not immunized may create health risks if they contract a vaccine-preventable disease because they can transmit it to other family members, peers, friends, and neighbors. Yet, vaccinations are among the safest and most effective preventive measure, and, in general, a child is more likely to suffer complications from the disease than from immunizations.

Child Mortality

Another indicator of children's health status is child mortality. For children over 1 year of age, the overall decline in mortality during the 20th century has been impressive (Figure 1-7). In 1900, the death rate for children 1-4 years of age was about 2,000 per 100,000 population, 460 for 5-9-year-olds, 300 for children 10-14 years old, and 500 for 15-19-year-olds. By 1998, the death rates in these age groups had declined by 98%, 96%, 93%, and 85%, respectively (Murphy, 2000). The decline in deaths for adolescents has plateaued since the 1960s. At the beginning of the 20th century, the major cause of child mortality for 1-19-year-olds was infectious diseases. However, the mortality and morbidity from all of these diseases are dwarfed by the numbers of children who die or who are disabled as the result of unintentional injuries. Until recently, injuries were commonly termed "accidents," suggesting that they were unpredictable and unavoidable events affecting unlucky children. Today, the term "injury" is favored because it more accurately suggests that the problem can be averted and prevented.

Injury is defined as damage or harm to an individual resulting in destruction of health, disability, or death (Deal, Gomby, Zippiroli, & Behrman, 2000). An injury is classified as intentional or unintentional, denoting whether or not it was meant to harm the victim. Box 1-3 shows those typically included in each category.

Among children aged 1-19, unintentional injuries are responsible for more deaths each year than homicide, suicide, congenital anomalies, cancer, heart disease, respiratory illness, and HIV combined (CDC, National Center for Injury Prevention and Control, 1999). Although unintentional injuries are the leading cause of death for all children over 1 year of age, the incidence varies by age. More than one-half of all unintentional injury-related deaths occur in the 15-19-year-old group due to motor vehicle-related injuries. Common subcategories of motor vehicle injuries include (1) occupant (drivers and passengers), (2) bicycle-related, (3) motorcycle, and (4) pedestrian injuries.

There is considerable variation in injury rates among children depending on their age group. Among children under 1 year of age, suffocation is the leading cause of unintentional injury-related death, followed by motor vehicle occupant injury, choking, drowning, and fires or burns. Some suffocation deaths in infants are due to entrapment of the head and neck in cribs. Another cause is choking on food or an object, leading to airway obstruction. For children aged 1—4 years, drowning is the leading cause of injury death, followed by motor vehicle occupant injury, fires or burns, and airway obstruction. Infants often drown in bathtubs, usually as a result of poor supervision or neglect, whereas toddlers and young children fall into a body of water such as a swimming pool, lake, or river, usually while unsupervised. Among children aged 5-14, motor vehicle occupant-related injury is the leading cause of death, followed by drowning, pedestrian injury (i.e., motor vehicle collisions with the child), bicycle injury, and fires or burns (National SAFE KIDS Campaign, 1998). Pedestrian injury often occurs when a child darts out between parked cars or into the street to get a ball or another object. During adolescence (14-19 years), motor vehicle occupant injuries are the primary cause of injury-related deaths. Driver inexperience and alcohol use are key contributors to the high rate of fatal crashes in adolescents (Grossman, 2000).

Rates of unintentional injury deaths among children have declined by 43% over the past several decades. Decreases in injury deaths have been observed for every age group and for nearly all causes. Reductions have been most evident among adolescents and for poisoning deaths (CDC, National Center for Injury Prevention and Control, 1999b). Additionally, most unintentional injury deaths to children can be prevented. Simple proven interventions such as using child car seats and bicycle helmets, requiring that prescription medications have child-resistant caps, installing smoke detectors in homes, requiring that children's sleep wear be flame retardant, and enclosing swimming pools with fences have saved the lives of thousands of children each year.

The key approaches to injury prevention are education, changes in the environment and in products, and legislation or regulation. Education to promote changes in individual's behaviors has reduced the risk of childhood injuries. Education by health care professionals has increased individual safety behaviors, including seat belt and car seat use, smoke detector ownership, and safe hot water temperature. Nurses and other health care providers should incorporate education about safety practices into routine health visits. Pediatric nurses can play an important educational role by teaching caregivers about expected behaviors for their child's upcoming developmental stage. This alerts them to the types of injuries common to that age group and to potential environmental hazards. Nurses can initiate safety programs in schools, neighborhoods, and cities (Figure 1-8).

Changes in the environment and in products can make children's physical surroundings, toys, and clothing safer. Strategies that make children's environments safer such as traffic calming to reduce or slow the speed of traffic in neighborhoods and fencing to enclose swimming pools on all sides should be implemented in all communities and be mandated by law. Legislation and regulation are among the most effective tools to reduce injuries, and most environment and product modifications require legal action. However, some laws have not been adopted in every state, e.g., 35 states lack bicycle helmet laws (Bicycle Helmet Safety Institute, 2000), and most states do not require appropriate protection in automobiles for children between the ages of 4 and 8. For maximum effectiveness, laws, regulations, and policies must be supported by the public and enforced at the community level. A major challenge is to coordinate all groups involved in unintentional injury prevention to create a critical mass for action (Schieber, Gilchrist, & Sleet, 2000).

Access to Health Care

For a growing number of children, access to health care is hampered by lack of health insurance. The number of uninsured children has been growing at an alarming rate. In 1999, approximately 11.9 million children (one in seven) under the age of 19 lacked health insurance (U.S. Census Bureau, 1999). Ethnic minority children are overrepre-sented among the uninsured. They account for more than half of uninsured children. Three-quarters of uninsured children are among the working poor, that is, in families in which the head of the household is employed full time for all or part of the year (Office of the Assistant Secretary for Planning and Evaluation [OASPE], 1998).

Socioeconomic status largely dictates the source of children's health insurance. Those from higher income families are more likely to have private health insurance (90%) than are children from lower income families (40%) (Brennan, Holahan, & Kenney, 1999). Uninsured children in low-income families experience substantial difficulties in accessing health care. They tend to lack (1) the usual sources of routine and sick care, (2) a primary care provider, and (3) recent visits to health care providers. Uninsured children are more likely to be underimmunized and to go without needed medical services due to the costs of care (Newacheck, Halfon, & Inkelas, 2000).

Despite high employment and a robust economy during the previous 8 years, the number of uninsured children continued to grow. Several factors have contributed to this situation, predominately welfare reform. Between 1995 and 1997, 1.25 million individuals lost Medicaid coverage due to welfare-to-work initiatives (Families USA, 1999). Many families who left the welfare roles obtained low-paying jobs for which their employer did not offer health insurance coverage or could not afford to pay the contributions toward the insurance premiums. Although many adult members of families were no longer eligible for Medicaid due to reforms, most of the children in these families were and are still eligible for its benefits; however, many of these families are unaware that their children continue to be eligible. Additionally, some children lost their coverage because welfare administrators failed to inform families of their continuing eligibility. Other families lost coverage because of state administrative errors, barriers, and misunderstandings. Finally, in some states, efforts were made to deter individuals from applying for Medicaid (Sochalski & Villarruel, 1999).

In response to the growing problem of uninsured children and to expand health insurance coverage for them, Congress enacted the State Children's Health Insurance Program (SCHIP) as part of the Balanced Budget Act of 1997. SCHIP was established as Title XXI of the Social Security Act. Not since the enactment of Medicaid in 1965 has there been greater funding for children's health insurance coverage. The purpose of SCHIP is to provide health insurance coverage for children through 18 years of age who are uninsured or ineligible for Medicaid. More than $40 billion in federal grants will be allocated to states over a 10-year period. States must contribute a defined share of funds to obtain federal matching grants (American Academy of Pediatrics Committee on Child Health Financing, 2001). By October 2000, 3.3 million children were enrolled in SCHIP programs (Health Care Financing Administration, 2001).

The success of SCHIP will depend heavily on getting caregivers to enroll their children in the program. Nurses must assume responsibility for helping to facilitate access to health care for families with children. First, they need to be aware of their state health insurance coverage's eligibility requirements and procedures for enrollment. Nurses should work with community agencies in developing mechanisms for identifying children eligible for federal and state programs. Then, they must refer families to available resources and intervene if necessary to help them navigate through the system.

Beyond the barriers created by lack of health insurance, there are other factors involved in access to and use of care. Demographic factors such as family income, race/ethnicity, place of residence, and type of insurance have been identified as barriers to access of care (Sochalski & Villarruel, 1999). Institutional factors such as gate keeping by health plans, distance from families' homes to health site, availability of transportation, and waiting times are other factors. Nurses need to assess barriers for families in accessing health care beyond their insurance status in order to ensure that children will receive needed health care.

PERSPECTIVES ON PEDIATRIC NURSING

Family-Centered Care

All health care professionals recognize that quality health care of children must extend to the entire family. Thus, the focus of pediatric nursing must be on the child as well as the family. The term family-centered care describes a philosophy of care that recognizes the centrality of the family in the child's life and inclusion of the family's contribution and involvement in the plan for care and its delivery. It is a health care delivery model that seeks to fully involve families in the care of children. Family-centered care evolved in response to the critical need to maintain the relationship between hospitalized children and their families. Previously this relationship had been neglected or disrupted because of forced separation by the health care system.

In 1987, a revolutionary document that defined the elements of family-centered care was published by the Association for the Care of Children's Health (ACCH). Family-centered care was defined by this group as including eight equally important elements (Box 1-4). Meeting the ever-changing needs of all family members, not just those of the child, is paramount to the concept of family-centered care. When families are incorporated into the care of their children, the physical and psychosocial health of the child improves and accelerated rates of progress have been seen. Additionally, these families have demonstrated enhanced learning, less stress, and more satisfaction with care (Heller & McKlindon,1996).

The elements of family-centered care are based on principles that are designed to promote greater family self-determination, decision-making capabilities, control, and self-efficacy. Collectively, these attributes are said to reflect a sense of empowerment. In contrast, the medical model directs health care professionals to assume the roles of evaluator and controller of treatment interventions. This approach results in child and caregiver dependence on the health care providers (Dunst & Trivette, 1996). This position is in direct conflict with the conditions necessary for more active involvement of caregivers in the care of their health-impaired children.

Many health care providers respect and support the idea of family-centered care; however, the practice of this type of care has not been fully actualized (Ahmann, 1994). This discrepancy between their support and actual practice of family-centered care may be attributed in part to the model they employ (family empowerment versus medical approach). Additionally, professionals often inadvertently foster family dependency, alienation, and helplessness by taking control and administering care without family input for the convenience and expediency of the staff and the institution. However, in order to facilitate family-centered care, health care providers must seek caregiver input, suggestions, and advice; incorporate this information into the plan of care; and teach the family the appropriate health care interventions. By providing education and knowledge to the family, caregivers can be empowered to make informed decisions about their child's care (Dunst & Trivette, 1996). Other strategies that enhance family-centered care include no limits on the ages or number of visitors (unless directed otherwise by the family); adequate sleeping facilities for caregivers in the child's room; meals or discounts in cafeterias for caregivers; free parking or a discount for caregivers; and family attendance at interdisciplinary conferences regarding the child's care.

Atraumatic Care

Atraumatic care is a philosophy of providing care that minimizes or eliminates physical and psychological distress for children and their families in the health care environment. In pediatric care, many interventions are traumatic, stressful, and painful; therefore, it is important for nurses to be cognizant of these situations and provide care that minimizes distress. Three principles provide the basis for atraumatic care: (1) identifying stressors for the child and family, (2) minimizing separation of the child from caregivers, and (3) minimizing or preventing pain (Furdon, Pfell, & Snow,
1998). Examples of atraumatic interventions include:

• Preparing the child prior to every procedure using age-appropriate explanations

• For the child scheduled for surgery, preparing her or him prior to hospital admission (encourage child and caregivers to visit the hospital, allow the child to play with equipment and items such as a stethoscope, blood pressure cuff, IV equipment, masks and gowns)

• Allowing caregivers to be involved and physically present as much as possible to provide support and comfort for the child

• Controlling pain by administering analgesics freely

• Using a euteric mixture of local anesthetics (EMLA) cream at least 1 hour prior to blood draws, insertion of IV needles, and injections

MEETING THE CHALLENGES OF THE 21ST CENTURY

Child health care has changed considerably over the past 20 years. Health care systems were previously focused on the treatment of disease. Health care personnel placed a greater emphasis on treating disease while neglecting early detection and treatment of illness as well as health promotion and maintenance. Disease treatment usually involved invasive procedures through medical technology in acute care settings, a costly approach. Financing and reorganization of services has changed to a managed care system. With managed care, the traditional physician-oriented focus has shifted to a payer-oriented focus emphasizing health promotion, disease prevention, and cost containment. Cost cutting in health care institutions is currently pervasive in the market-driven system of the United States, resulting in a move from inpatient acute care or more ambulatory and community-based care. Health promotion has always been an area of strength for nursing practice. Nurses are in an excellent position to be leaders in today’s health care market. Additional major shifts have occurred in providing health care, including:

• Children in inpatient facilities having conditions that
are more acute

• Shorter length of stay in these facilities

• Increased incidence of chronic illnesses

• Constraints on delivery of care, including reduced
human and material resources

• Advances in telecommunications and information
technology

These changes in the health care delivery system have resulted in unprecedented challenges for nurses who care for children and their families.

Telecommunications and the Internet have made available vast amounts of health information for health care providers as well as the consumer. The public is becoming so well informed about their health problems that the mystique, and therefore, the power of medical providers are disappearing.   Clients   are challenging clinicians with information obtained on the Internet, and the increasing available health information is changing nurses' role from health expert to information broker (Clark, 2000). Yet, this information is of variable quality. Nurses caring for children will need to be able to use critical appraisal skills to evaluate health information and to help caregivers interpret it. They can direct families to valid websites, identify reliable sources of information, and teach them evaluation skills.

Key Concepts

Current societal trends affecting children, their health, and their families include immigration, poverty, homelessness, migrant farm work, and violence.

Healthy People 2010 sets forth national health goals and objectives for adults and children, and focuses on disease prevention and health promotion.

The aggregate health status of infants, children, and adolescents is determined statistically by keeping records of indicators such as infant mortality rate, low birth rate, and immunization rate.

The infant mortality rate is the lowest ever recorded in the United States, and low birth weight is considered the leading cause of infant mortality in the United States.

The leading cause of death in children 1-19 years of age is unintentional injuries, with the majority of deaths resulting from motor vehicle occupant injury.

Family-centered care is based on principles that are designed to promote greater family self-determination, decision-making capabilities, control, and self-efficacy.

The primary roles of pediatric nurses include caregiver, advocate, educator, researcher, and manager/leader.

Diversity of pediatric health care settings and a shift in focus of health care from treatment of disease to promotion of health have led to nurses functioning in advanced practice or expanded roles such as pediatric nurse practitioners, clinical nurse specialists, and case managers.

Review Questions

1. Describe how poverty affects children.

2. Define infant mortality.

3. What can nurses do to prevent firearm-related injuries
and deaths in the home, school, and community?

4. Which of the following is the leading cause of death in
children under 19 years of age?

a.      cancer

b.      heart disease

c.       congenital anomalies

d.      injuries

       5.         What major health protection measure has reduced the incidence of poisoning from prescription drugs?

      6. What strategies can nurses include in their practice
that relate to family-centered care?

      7. Describe each of the roles that nurses take when interacting with children and their families, and explain how they are connected to one another.

      8. Define differentiated practice, and describe why it was
developed.

      9. Discuss the differences between the pediatric nurse
practitioner and the pediatric clinical specialist.

1 O.  Describe case management, and discuss why it was developed.

LEGAL AND ETHICAL ISSUES

Pediatric nursing spans a broad developmental spectrum within a arrow age range. This developmental spectrum presents a challenge for pediatric nurses not only in the delivery of health care, but also in legal and ethical decision making. Whether or not a minor can consent to confidential health care is one of the many legal issues faced by pediatric nurses.

Nurses are confronted every day with situations in which difficult decisions must be made based on the determination of right and wrong. Technological advances have created unprecedented choices not only for society at large, but specifically for nurses and their clients. Nurses caring for children in critical care areas encounter ethical dilemmas such as whether or not to resuscitate a dying child whose quality of life may be bleak or which treatment option will provide the most benefit and do the least harm for a child. Therefore, it is important for nurses to have a basic understanding of the laws that affect their practice and the ethical guidelines that can be used to resolve dilemmas. This chapter explores pediatric legal topics, along with the concept of ethics, ethical theories and principles, and the process of ethical decision making.

LEGAL CONSIDERATIONS

It is essential for nurses to understand that the same legal problem may be solved differently in different states. Health care is often controlled by state laws and regulations. The answers to many questions will vary from state to state, depending on both the specific laws of each state and how the state courts interpret those laws. It is difficult for a textbook to provide answers to specific legal questions. In dealing with actual legal problems, it is important for the nurse always to consult with someone who is familiar with the laws of the state where the individual is licensed. Table 2-1 lists the different sources of law.

INFORMED CONSENT AND ASSENT FOR HEALTH CARE

In 1914, Justice Benjamin Cardozo stated, "Every human being of adult years and sound mind has a right to determine what shall be done with his own body ..." Schloendorff v. Society ofN.Y. Hospital (1914). This famous court case created the legal foundation for requiring informed consent prior to medical treatment. Informed consent is the duty of a health care provider to discuss the risks and benefits of a treatment or procedure with a client prior to giving care. Informed consent must include the following: the nature of the procedure, the risks and hazards of the procedure, the alternatives to the procedure, and the benefits of the procedure (Box 2-1). After receiving informed consent, the client has the right to accept or refuse any health care. If a hospital or health care provider treats a client without proper consent, they may be charged with assault and held liable for any damages. While pediatric clients are entitled to informed consent, it is usually the role of the child's parent or legal guardian to give informed consent. In most cases, a child is asked to give assent prior to receiving a treatment or a procedure. Assent means the pediatric client has been informed about what will happen during the treatment or procedure, and is willing to permit a health care provider to perform it.

For example, a 10-year-old boy comes into the office to have stitches placed in his right hand. The health care provider asks the child's parent for informed consent after the parent has been provided information about the risks and benefits of local anesthesia and the placement of sutures. Alternatives to suturing and the risks of leaving the wound open are discussed. Once the parent provides informed consent, the boy is asked to assent to the procedure. The boy is told that a tiny needle will be used to put a little numbing medication in the skin. When the skin is numb, the health care provider will place some stitches to close the cut. If the child agrees to having stitches, he has given assent to the procedure. While assent is not legally required, it is always better to have the cooperation of the child prior to giving care (Pieranunzi & Freitas, 1992). Assent from the child may maximize success of the procedure and minimize trauma to the child.

Legally, it may not be necessary to obtain parental consent prior to performing a sexual assault or other forensic examination, but it is important to have the assent of the child or adolescent prior to starting an examination. A forensic examination is performed for the purpose of collecting medical evidence when the health care provider suspects the client may be the victim of a crime. In cases of sexual assault or abuse, a child should never be forcibly restrained for a genital or rectal examination (Wissow, 1990). Forcing a child to participate in a forensic examination may damage the child's ability to testify in a criminal case, especially if the child perceives the medical examination as another episode of abuse (Figure 2-1).

When a Minor Can Consent for Care

In all but three states, a minor is a person under the age of 18. In Alabama, Nebraska, and Wyoming, the age of majority is 19 (Jacobstein & Baren, 1999). In many states, a child under the age of 18 can consent to specialized types of care without the notification or consent of parents. In most states, care involving pregnancy, contraception, or treatment of sexually transmitted diseases does not require either consent from or notification of parents. Children may also seek drug and alcohol treatment without the consent of a caregiver. The purpose of these laws is to encourage children to seek help in situations in which they might avoid care if they were required to inform their caregivers (Abbott, 1996).

Some states allow minors to make medical decisions if, under the laws of the state, the minor is considered to be emancipated. Emancipation is the legal recognition that a minor lives independently and is legally responsible for his or her own support and decision making. Emancipation can occur through an official court proceeding. During the proceeding, the judge will establish whether the minor is living on his or her own and no longer requires the financial support of parents. In some states, a minor may become automatically emancipated by marrying, joining the military, or becoming a parent before the age of majority (the age, determined by state law, at which a person is considered to have all the legal rights and responsibilities of an adult). Emancipation laws vary from state to state, and some states do not officially recognize any form of emancipation.

A minor who has not achieved emancipation may be able to consent to medical care in some states following the mature minor doctrine, under which a minor can consent to care as long as the individual demonstrates the maturity to understand the risks and benefits of the treatment (Nixon, 1992). The mature minor doctrine is another example of how the courts create laws through decisions made by judges. Unless the definition of a mature minor is defined by a law or statute, appellate courts in each state have the ability to define the legal requirements for a mature minor. This definition can be created only when a case that disputes the ability of a child to make a health care decision is brought to court. In Illinois, the Supreme Court decided, "To permit a minor to make her own health care decisions a court must find, by clear and convincing evidence, that a minor is mature enough to appreciate consequences of actions and mature enough to exercise the judgment of an adult . . ." (E.G. v. E.G., 1989). In Tennessee "Whether a minor has capacity to consent to medical treatment depends upon age, ability, experience, education, degree of maturity or judgment obtained by the minor . . ." (Caldwell v. Bechtol, 1987).

Parental Consent after Divorce

After divorce, the ability to consent for medical care rests with the parent who has been granted legal custody by the divorce decree (the legal document approved by the court that grants divorce, divides marital property, and specifies child custody). In order to serve the best interests of the child, the court will often grant both parents legal custody of the child. This means that both parents will be able to give consent for medical care. Even when one parent has legal custody, the parent who has physical custody of the child maybe able to give informed consent for emergency care (Veilleux, 1989). For example, if a child is visiting the parent who does not have legal custody, the one who is physically present with the child may be able to consent for emergency care. If parents have joint legal custody and disagree on whether or not a child needs medical care, it may be necessary to obtain a court order before providing care.

Refusal of Medical Care by Parent or Child

What are the rights of the child when a parent refuses health care that could benefit the child? In most situations, a parent will seek appropriate medical care for an ill child. However, there are cases in which an individual refuses to give consent for potentially lifesaving medical care when it conflicts with her or his religious beliefs. If a parent refuses to act in the best interests of the child, the state may step in and make legal decisions for the child. Under the theory of parens patrie, the state has an overriding interest in the health and welfare of a child. Parens patrie is a legal rule that allows the state to make decisions in place of parents when they are unable or unwilling to provide for the best interests of the child.

In certain situations, adolescents have been able to refuse medical care without notifying or obtaining consent from their parents. Using the mature minor doctrine, some courts have allowed older adolescents to refuse lifesaving medical treatment or to refuse medical care that prolongs a terminal illness (Wadlington, 1994).

Some states use child abuse statutes that make medical neglect a form of abuse as legal justification to take custody of a child who needs medical care. While many of these abuse statutes include an exemption for religious practices, the court will still take custody of an endangered child. The religious exemption clause only prevents the parents from being prosecuted for medical neglect. However, religious exemptions do not protect parents when medical neglect has resulted in the death of a child (Wadlington, 1994). The ability of the state to take legal custody or guardianship of a child is usually limited to circumstances in which the life of a child is endangered.

OBTAINING INFORMED CONSENT UNDER SPECIAL ClRCUMSTANCES

Advances in medical and nursing science create both new opportunities and new legal conflicts. Often the legal implications of new technologies are not anticipated until a conflict occurs. Legislation is often created after a problem is given a legal interpretation by the courts.

Consent for Donation of Tissue or Organs

The improved availability of transplant technology has increased the demand for suitable donors of tissue and organs. An organ or tissue from a living child may be the only hope of survival for a terminally ill sibling or other family member. When a child is too young to give informed consent for organ or tissue donation, the parent or legal guardian may consent for the child. Usually, a court hearing will be required to establish whether the individual providing consent is acting in the best interests of the child who is donating the tissue or organ. In the case of Curran v. Bosze (1990), the Supreme Court of Illinois decided that for a minor child to donate tissue, three requirements must be met. First, the parent who is consenting must be aware of the risks and benefits. Second, the child's primary caregiver must be able to provide emotional support for the child. Third, there must be a close relationship between the donor and the recipient (Dufault, 1991). It is important to realize that other state courts may require different standards to be met before allowing a minor to participate in tissue or organ donation.

Consent for Genetic Testing

Another dilemma created by new technology is genetic testing of children. While a parent or guardian can consent to genetic testing for the child, as in the case of all diagnostic tests, the benefits and the risks should be discussed with the child when appropriate. Since most genetic testing requires only a blood sample, there is usually no physical risk to the child. At the same time, there can be psychological risks to the child that include decreased sense of self-worth, anxiety, and disruption of family bonds (Lessick & Faux, 1998).

Overall, the best interests of the child should be evaluated before any genetic testing is ordered. A health care facility that offers genetic testing should be able to provide appropriate counseling both before testing and after results are received. The facility should also establish policies for advocating for the best interests of the child. When possible, informed consent should be obtained from both the parent and the child. Finally, there needs to be a process by which a mature adolescent can receive test results without the con-sent or notification of the parent (Lessick & Faux, 1998).

Children and Medical Experimentation

Medical research is an important part of improving health care. Since there are many diseases and physical conditions that have an impact on the lives of children, there is often a need for them to participate in research studies. Many researchers believe that children should not be used as research subjects unless there is a benefit to the child participating in the study or to children in general (Rowell & Zlotkin, 1997). All research facilities that receive federal funds must comply with federal regulations that require review of all experimental protocols by an Institutional Review Board (IRB) (Code of Federal Regulations, 1983). An IRB is a group of professionals that reviews research proposals for an institution to make sure that the research does not cause undue harm to subjects. The IRB also makes sure that all state and federal regulations are followed by researchers at the institution. Federal regulations require the consent of one or both parents and the assent of the child, depending on the amount of the potential risk and benefit associated with the treatment or procedure (Glantz, 1998). As client advocates, nurses who are involved in pediatric experimental protocols should make sure that all efforts are made to acquire appropriate consent and assent from study participants. Further discussion of children and medical experimentation can be found in the ethical section of this chapter.

CONFIDENTIALITY

The right to confidential health care is protected by the U.S. Constitution, federal and state laws, and the ethical codes of health care professionals. Confidentiality is an essential part of the relationship between client and health care provider. If clients do not feel secure about divulging their medical information to a provider, their care becomes restricted. Most nurse practice acts define a nurses duty of confidentiality. If a nurse breaches confidentiality, she or he can be held sible for any damages that result. The nurse may also be disciplined by both the employer and the state board of nursing.

When a Minor Can Receive Confidential Care

As stated earlier, some states allow children to access confidential care for contraception, treatment of sexually transmitted diseases, drug and alcohol treatment, and mental health care. Some states also provide access to confidential human immunodeficiency virus (HIV) testing. It is important for nurses to be familiar with the laws and regulations concerning confidentiality in the state where they practice.

When a Health Care Provider Can Breach Confidentiality

There are four recognized exceptions when a provider can breach client confidentiality. The first is mandatory reporting laws for child abuse. All 50 states have these laws. If a health care provider fails to report suspected abuse, the individual may be liable for criminal charges. Most mandatory reporting laws carry the possibility of both fines and a term of imprisonment for failure to make a report. If a child receives additional injuries after the health care provider should have reported suspected abuse, the provider may be liable for civil damages to compensate the child.

The second exception is mandatory injury reporting laws that apply to all clients who are injured by a weapon or criminal act. If a client is given care for a gunshot or stab wound, the provider may be required to breach confidentiality and report that information to law enforcement.

A provider may also be required to follow public health laws that require reporting infectious diseases to the local health department. Many states require providers to report cases of tuberculosis, HIV, hepatitis, and sexually transmitted diseases. Some states also require reporting of poisonings by pesticides or other agricultural products.

Finally, providers may be required to breach confidentiality when there is a duty to warn third parties. In the case of Tarosoff v. The Regents of the University of California (1976), a psychiatrist was held liable for the death of a woman who was murdered by her boyfriend. The boyfriend, a client of the psychiatrist, had disclosed during a therapy session his intent to kill his girlfriend. The family of the murdered woman sued the psychiatrist and won on the grounds that the physician had a duty to warn the woman about the threat to her life. In this case, the court decided that the risk of harm to a third party outweighed the client's right to confidential health care. The duty to breach confidentiality by warning a third party is required only when there is a specific threat to an identifiable person.

There is new case law that may extend the duty to warn to persons who may have a genetically inherited disease risk.

In the case of Safer v. Estate of Pack (1996), a physician failed to warn the child of a client that she could have a higher risk of colon cancer and should receive early and frequent screening. When colon cancer developed in the daughter, the physician was sued for failure to warn.

Role of Nurses in Maintaining Confidentiality

Nurses play an important role in maintaining client confidentiality. They are legally and ethically responsible for keeping medical records and other types of client communications confidential. They need to be especially cautious about giving client information over the phone or releasing information to the news media. Prior to releasing any confidential health information, the nurse should always receive written permission from the client.

Nurses also need to be aware of the need to keep electronic medical records confidential and secure. Proper use of passwords and screen savers can prevent unauthorized access to computerized medical records. As more medical records and client interactions are transmitted electronically, nurses will need to develop strategies for maintaining privacy in this rapidly changing area of health care.

MALPRACTICE IN THE PEDIATRIC SETTING

Anyone who works in the field of health care is constantly faced with the issue of negligence or malpractice. Negligence is defined as an occasion when a person owes a duty to another and, through failure to fulfill that duty, causes harm. Malpractice is professional negligence. It is important to understand that a bad outcome for a client in the hospital or clinic setting is not automatically malpractice. Even when a nurse or physician makes a mistake while providing care to client, a malpractice lawsuit may not be a possibility. For a court to recognize a claim of malpractice or negligence, four legal elements must be present.

1. There must be a duty owed to the client by the nurse.

2. The nurse must breach that duty.

3. The breach of duty must be the cause of the damage.

4. There must be actual damage to the client.

When a claim of malpractice is made, the person making the claim (client) is the plaintiff. The nurse who is being accused of causing the injury is the defendant. Using the example of a medication error, let us look at the four elements required to prove a case of malpractice.

Duty

Duty is the special relationship created when a person agrees to provide care to a client. The amount of time the duty is owed to the client will depend on the setting in which the care is given. When a nurse accepts an assignment of clients at the beginning of the morning shift, under the laws of negligence, the nurse is considered to have a legal duty to provide care for those clients. After the shift is completed and the evening shift nurse accepts the assignment of those clients, the first nurse is relieved of his or her duty to them. If the evening shift nurse gives a child gentamicin instead of the ampicillin that was ordered and the child suffers an anaphylactic reaction, the duty of the morning nurse is not extended to the actions of the evening nurse. The nurse from the morning shift will not be held responsible for this medication error because that individual no longer owed a duty of providing the child with medication after the shift was completed.

Breach of Duty

When a nurse fails to meet the standard of care, he or she has breached the duty to the client. In medical administration the standard of care is the right client, the right medication, the right dosage, the right time, by the right route. By giving the wrong medication in the example above, the nurse breached the standard of care. Most malpractice cases require testimony from a nurse who is familiar with the particular area of nursing in question to determine whether the standard of care was breached. In other words, a labor and delivery nurse would not be able to testify about the standard of care for a pediatric client unless the individual could show prior experience in that area of nursing. Both the plaintiff and the defendant may each have a nurse testify about what is considered to be the standard of care.

Causation

The injury to the client must be the result of the breach of the standard of care. If the child actually died because of respiratory failure that was unrelated to the medication error, malpractice did not occur. Causation is sometimes a difficult element to prove in a malpractice case. It may be impossible to determine whether the injury was the result of care given or if the client had a preexisting problem that caused the injury. Often medical expert testimony is required to establish causation.

Damages

Unless there are damages when an error is made, there is no malpractice. If the nurse gave the antibiotic 2 hours late but the child had no adverse affects, the client would have no claim for malpractice. Damages in a malpractice case may include lost wages, pain and suffering, and actual medical expenses. When a child is injured by malpractice, the actual cost of treating the injury is not the only money awarded. Costs will be awarded to pay for any care that will be required in the future because of the malpractice injury. An infant with severe brain damage will recover more money than an 80-year-old man because the cost of providing total care for the child will be multiplied by the child's life expectancy. A child with a 40-year life expectancy will be compensated more than an 80-year-old man with a 1-year life expectancy.

Malpractice Prevention

Caring for pediatric clients can create situations that increase the risk for allegations of malpractice or negligence. Using the weight of a child to confirm a dosage can decrease edication errors, which are an area of special concern. Pediatrie medications come in several forms, including elixir, pill, parenteral, and suspension; therefore, it is important to make sure any medication is given by the correct route (Hamlin & Coplein, 1998). It is especially important to give accurate amounts of intravenous solutions, since a small volume can create significant problems in a child or infant.

Child safety is another area of concern when caring for the pediatric client. It is important to keep side rails elevated to prevent small children from falling out of bed. Children are also more susceptible than adults to burns. Hot water bottles, heating pads, and heat lamps should be avoided or used only with extreme caution. Children are considered to be a vulnerable population; therefore, the nurse has a heightened duty of care with pediatric clients (Hamlin & Coplein, 1998).

Medical Records

The client's chart is usually the most important document in a malpractice case. Charting is the nurse's opportunity to document the care given. This medical record will be the best evidence of both the chronology of events and what actually happened during a critical event. Always chart legibly and completely. When charting, avoid using judgmental terms—describe rather than label behavior. An example would be to chart that the caregiver has not performed the exercises that were prescribed by the physical therapist, rather than saying a caregiver is not cooperating with physical therapy. Never alter a medical record. In some states, altering a medical record is considered unprofessional conduct and can result in a formal complaint against a nurse's license. If you forget to chart an important detail, date and time a late entry.

PEDIATRIC NURSES

Every nurse should read and understand the Nurse Practice Act in the state where he or she is licensed to practice nursing. This act describes the scope of nursing practice and defines both illegal and unprofessional conduct for nurses. The state board of nursing is an excellent resource for assisting nurses with the resolution of legal issues. The board of nursing can provide valuable guidance if there is a particular legal concern involving nursing practice in the state.

Nurses also need to be aware of other state laws that affect nursing practice. Does your state have a Good Samaritan Act that protects a nurse from liability when care is rendered voluntarily at the scene of the accident? Nurses also need to know their duty under the mandatory reporting laws of the state. All states require reporting child abuse. Your state may also require reporting of other types of abuse or injuries, including gunshot or stab wounds.

Find out if your hospital or health care facility employs a risk manager. In many health care facilities, the risk manager is a nurse with specialized training or a nurse who is also an attorney. The risk manager is responsible for making sure the facility conforms to state and federal laws. A risk manager should also review policies and procedures, which affect both client care and the legal rights of clients. Your facility should have policies and procedures dealing with informed consent, confidentiality, refusal of care, and other important legal issues (Figure 2-2).

If you work at a large health care institution, your hospital may have an ethics committee. The role of this committee is to provide a team of both professionals and laypersons to discuss and provide guidance when an ethical conflict arises. The ethics committee may also facilitate communication between clients and health care providers when there is an ethical conflict. As with other aspects of health care, nurses should update their knowledge of legal issues on a regular basis. The law is constantly changing, and in order to provide appropriate care, a nurse must keep up with the changes that affect both nursing practice and the rights of clients.

CONCEPTS OF ETHICS

Pediatric nursing practice today occurs in a multitude of settings, including acute care facilities and community-based agencies. Nurses are most often the primary care providers whatever the setting and are, therefore, the first health care group to become aware of an ethical issue. In addition to understanding the legal parameters of safe practice, the professional nurse must ground her or his daily activities in a solid ethical foundation. It is important, then, for the nurse to understand basic terms relevant to ethics. Ethics is the study of the nature and justification of principles that guide human behaviors and that are applied when moral problems arise. It is the study of the Tightness of conduct. As children develop, they learn and internalize standards of right and wrong. Religion, culture, and society all influence the formation of morals (principles of right or wrong in behavior).

Morality is behavior in accordance with custom or tradition that usually reflects personal or religious beliefs. An example of a moral belief is a persons desire to maintain her or his right to die. Values are the constructs used to give meaning to our lives. These are also influenced greatly by the religion, family, and society into which one is socialized. Values are motivational preferences. When one assesses what is beautiful, it is considered an aesthetic value. Monetary preferences reflect economic values. Judgments on what is good or bad, right or wrong reflect our moral values (Omery, 1995). It is important for nurses to assess their own values and prioritize them. A student nurse in a pediatric clinical rotation might feel that the priority value for the mother of a 4-year-old boy recovering from a vehicular accident is to be at her child's bedside rather than to continue to work and see the child for a limited time in the evening. He calls out for his mother continuously.

The student in this situation has given "family" a higher priority than economic considerations and is conveying her value judgment to the parent. Education in the nursing profession and the effects of role modeling by significant others in our lives are also key factors in the acquisition of values. Most of us, consciously or unconsciously, make small daily decisions, as well as more monumental ones, based on our values. The employment setting sought by new nurses entering the field reflects a value in the sense that the setting is one that the individual prizes and chooses above others.

Values and ethics have an obvious relationship, and the intermingling of the two can complicate the nurse's role in an increasingly complex health care system. Today's health care practitioners are faced with a vast array of situations for which they have no past experience or tradition on which to base a moral judgment or ethical choice. Moral values are evaluated in terms of positive or negative effects. If the choice between good or bad results is very clear, no confusion or ethical dilemma will ensue. If, however, the good and bad effects are blended or the choice is between two evils, the moral choices for the nurse and the health care team become more difficult.

High-tech care of an infant born prematurely seems to be an obviously good choice in that it saves the infant's life. The converse side of that situation requires evaluation of the possible long-term negative consequences to the infant and family, such as the development of cerebral palsy. This result, with the accompanying lifelong disability, medical, social, and emotional consequences, may become a burden to the family unit (Merenstein & Gardner, 1993).

Knowledge of the major ethical theories and principles are of benefit to the nurse because they can be used to develop a theoretical framework for nursing practice. The following section will present ethical theories and principles relevant to contemporary practice.

ETHICAL THEORIES

Ways of thinking about ethical problems and issues are represented in a variety of theoretical positions or frameworks. Each framework has something to offer and should not be viewed as being in conflict with the others. Normative ethics provides the standards to justify our moral actions and choices. Ethical issues in health care generally involve normative ethics. Descriptive ethics differs from normative in that it "seeks to identify actual preferences or dispositions in ethical situations as they occur" (Omery, 1995, p. viii). Descriptive ethics looks at what is actually done in any given ethical situation, whereas normative ethics looks at what "ought" to be done.

Most situations encountered by the nurse in practice involve normative ethics. Four main groups of theory fall under the umbrella of normative ethics: deontologic theory, teleologic theory, virtue theory, and care theory. These guides are useful in providing meaning for moral experiences. They serve to justify human actions, maybe right or wrong, and present obligations or "ought to" statements (Bandman & Bandman, 1995).

Deontologic theory uses principles or rules to guide the decision-making process. The Tightness or wrongness of acts is clear-cut regardless of the consequences. Duty to others is emphasized. This theory is regarded by some as the key theory to be used for ethical decision making in health care (Loeb, 1992). The American Nurses Association Code for Nurses (1985) can be classified as a document based in deontologic theory, as it delineates rules and standards of behavior for nurses (Ornery, 1995). This code is a guideline for ethical conduct and delineates the nurse's obligation to clients.

Teleologic theory uses the consequentialist approach to set criteria for justifying any moral action. The desired outcome serves as the basis for the moral action rather than examining what should be done. For example, rationing of health care may deprive some vulnerable groups, such as developmentally disabled children, of the full array of health care services, but it would serve the greater good by providing health care to larger, broader segments of the general population (Kjervik, 1996).

Virtue theory looks at the intent of the moral agent. Development of traits of character such as excellence, truthfulness, gentleness, politeness, and trustworthiness lead to appreciation of a situation and the resulting appropriate decisions (Beauchamp, 1991). An example would be the general public's response to nurses belonging to unions, asking for contracts, or going on strike. It may be particularly offensive to some to think that nurses would abandon pediatric clients to go on strike. This perspective is based on the public's trust in nurses and its expectation that they will sublimate their desires for a just wage to the children's needs for care.

Care theory incorporates advocacy or acting on the client's behalf based on empathy and caring (Cameron, 1993). It tends to use the individual's needs or concerns as the framework for ethical decision making and essentially rejects objective-based rules or criteria for these decisions. An example of care theory is when a nurse practitioner employed in a school setting advocates for a teenage victim of sexual abuse to obtain counseling and protection.

Frequently, the terms ethics and bioethics are used interchangeably, but there is a distinction in meaning. Bioethics refers to "the application of moral reasoning to the life sciences, medicine, nursing, and health care" (Rachels & Callahan, 1995). Nurses are faced with a vast array of bioethical issues, including allocation of health care resources, prolongation of life, euthanasia, genetic engineering, abortion, and research involving fetal life. It is important to remember that the personal perspectives of the nurse and other health care professionals also enter into moral judgments because they all have biases that color the way they view any given ethical situation (Devettere, 1995).

ETHICAL PRINCIPLES

Knowledge of the following key ethical principles can assist the nurse when confronted with dilemmas of ethics: autonomy, justice, beneficence, nonmaleficence, veracity, and fidelity.

ETHICAL DECISION MAKING

Ethical reasoning is the process of thinking through what you ought to do in an orderly, systematic manner to provide justification for your actions based on principles. Ethical decision making is a rational way of resolving ethical dilemmas in nursing practice. It is used in situations in which the right decision is not clear or in which there are conflicts of rights and duties.

This five-step process is one model of a framework for resolving ethical issues (Aiken & Catalano, 1994). Step 1 involves collecting information about the situation, including client and family wishes and the biopsychological problems and circumstances. Step 2 entails stating the dilemma, which should be done as succinctly as possible in a brief statement of the main ethical issues. Step 3 consists of listing all possible courses of action to resolve this dilemma, though results of these options are not considered at this point; input from colleagues and experts is helpful at this "brainstorming" stage. Step 4 involves analysis of the advantages and disadvantages of each course of action. Enumeration of the

Figure 2-3 The Ethical-Decision-Making Process

advantages and disadvantages of each action must be considered in detail along with an evaluation of each course of action. Realistic choices can then be arrived at within, for example, a framework such as the ANA Code of Ethics. Step 5 consists of making the decision. Consequences of the decision must be accepted and framed within the client's wishes and a collaborative health team perspective.

ETHICAL DILEMMAS

Ethical dilemmas are part of nursing practice. Nurses find themselves in situations every day that are difficult both ethically and morally (Hagedorn, Gardner, Laux, & Gardner, 1997). No two situations or circumstances are ever the same. Each client, parent, legal guardian, caregiver, and family is different and poses different ethical concerns. The nurse with skill, knowledge, and caring can help families cope with these situations. Many of the circumstances surrounding llness in children are tragic. Many are sudden and due to unforeseen events; others are slow and insidious.

When identifying the ethical dilemma in a situation, the nurse must look closely at the issues involved. These may include, but are not limited to, issues such as conflicting rights, conflict between duties and outcomes, withholding truth versus informed consent, powerlessness versus authority, freedom versus submission, and client autonomy versus safety/welfare concerns. It is also important to note the legal/ethical rights of each person and whose "best interests" are being served (Alberta Association of Registered Nurses, 1987). The following sections give examples of situations in which the nurse may be presented with an ethical dilemma.

Withholding and Termination of Life-Sustaining Treatment

Many ethical dilemmas develop within the confines of the pediatric intensive care unit. Severely ill premature infants, newborns, and children present significant moral concerns to their caregivers and the entire health care team, including cardiopulmonary resuscitation orders or "do not resuscitate" orders, limiting treatment, withdrawing treatment, and definitions of brain death (Nelson, 1997). Parents need to be given the best information possible by health care professionals; however, they must still grapple with heart-wrenching decisions about health care for their child.

Children born extremely prematurely or with congenital defects or genetic disorders that are incompatible with life become clients in the pediatric or neonatal intensive care unit. It is the responsibility of the physician to carefully diagnose the child's health problems so that decisions can be made with all of the appropriate information available. Once these diagnoses are made, it becomes a case of acting in the best interests of the child. This issue concerns itself with providing optimal life opportunities in addition to valuing the life and health of that child. Discussions about the absolute value of life, the authority of the parent, and the degree to which the child will contribute to society need to take place (Bagwell & Goodwin, 1992; Geddes, Pace, & Hallworth, 1992).

The highly technological intensive care unit has many advanced and sophisticated technologies that can sustain life regardless of the eventual outcome. Aggressive treatment of all defects in children must be weighed against the long-term goal of success, quality of life, and/or a life of dependence or disability. There must be discussion about whether the child's illness is terminal and whether treatment is only prolonging the process of dying (Saal, 1995).

Nurses and physicians need to support the caregivers of children whose life expectancy is short. Giving correct information about the eventual outcomes of treatment may help them see the reality of the situation. They also need to understand that the purpose of the treatment may be palliative or life sustaining (Mims & Crisham, 1996). Parents who decide to withdraw treatment from their critically ill child are faced with the most heart-breaking decision of their lives—to let their child die. Because the health care system cannot repair all congenital defects or injuries, the caregiver, family, and health professional need to continue to keep in mind what is in the best interest of the child and their lives together (Geddes et al., 1992). Allowing a child to die by withdrawing treatment could be deemed the use of passive euthanasia, i.e., deciding not to treat and to let "nature take its course."

Parents may also be faced with making decisions based solely on the results of diagnostic tests performed while the woman is pregnant. These include the determination of severe spinal cord abnormalities such as spin a bifida, anen-cephaly (congenital absence of major portions of the brain and malformation of the brainstem), or trisomy disorders— all diagnosed from an amniocentesis or an ultrasound. Both the mother and the father must decide whether they will consent to aggressive treatment in the delivery room upon the birth of their child, who they know will be impaired and disabled. They are often given the option to abort the fetus, decline treatment for the infant, or consent to aggressive treatment (Bagwell & Goodwin, 1992). They may hope that the diagnosis was incorrect or further hope that a miracle will save their child (Purcell, 1997). In addition, they need to weigh what the potential outcome of treatment will be.

Another issue arises when the child is treated against the will of the parents or legal guardians. It is possible that physicians and nurses can be held responsible for the "wrongful life" of a disabled child. In these instances, the decision to treat the child was taken out of the legal consent process of the parents and usurped by the health care team and/or the courts (Bagwell & Goodwin, 1992).

Euthanasia (ending life by passive or active means) is an open practice within the health system of the Netherlands. Clients can decide for themselves whether to be part of active euthanasia and may request life-terminating treatments such as overdoses of medication. In a research study of pediatricians and neonatologists in that country, it was found that in the case of children these end-of-life decisions were never undertaken without the approval of the parents or legal guardians. However, active euthanasia, or intentionally causing death by giving a lethal treatment, did occur with the parents' consent in hopeless cases (van der Heide, van der Maas, van der Wai, Kollee, de Leeuw, & Hall, 1998). While this is not legal in the United States or Canada, the debate continues about who should decide whether a child should live or die.

Genetic Testing

Technology has allowed scientists to map the human genome. Genetic testing is determining whether or not individuals have genes that predispose them to a particular disease. It is already standard practice to routinely test newborns for phenylketonuria (PKU), sickle cell disease, hypothyroidism, and other disorders. However, there is an ethical concern as to whether or not determination of the potential for disease through genetic testing may limit a child's future ability to seek employment or obtain health insurance. This controversy is sure to grow in the future as more diseases are found to have a genetic basis that can be identified early in life (Cline, 1999; Lessick & Forsman, 1995).

Autopsies of Children

Caregivers are in a state of shock and disbelief when they are informed that their child has died. Often, they refuse to believe the news, accuse the health professional of lying, or emotionally strike out at the nurse or other health care professional. In other situations, the caregivers of a seriously ill child may express relief that death has occurred and may respond stoically to the news.

In instances in which the death of a child has occurred suddenly, state laws govern whether an autopsy will be required. An autopsy is a surgical procedure designed to determine the cause of death. When death is due to homicide, suicide, mysterious circumstances, and, possibly, accident, an autopsy will be performed regardless of the wishes of the parents or legal guardians. In other situations when a child dies, an autopsy may be suggested and encouraged by the health care professionals. For example, when a child dies from an illness that was not diagnosed prior to the death, the actual cause of death may be unknown. When death cannot be attributed to a particular cause, an autopsy may give a clearer picture about the child's illness. In this case, parents or legal guardians must give written consent before an autopsy can be performed.

Parents may also object to autopsy by saying that they do not want their child to have to endure any more pain or suffering. This may indicate that they are still in shock and have not been able to realize that the child is dead and cannot feel the autopsy. The nurse can help them cope with the death of their child when an autopsy is suggested by reassuring them that the results of the procedure will help define the cause of death and possibly may help other children and families. Some families find reassurance in the knowledge that the death of their child helped the health care profession in its quest to help others.

Organ Donation and Transplantation

Organ transplantation is another situation in which ethical considerations develop. The parents or legal guardians of a child who needs a transplant are usually desperate to find a suitable organ that matches the improperly functioning one in their child. On the other hand, another child has to die before that happens. State laws often require that family members be approached about donating organs after every death. This is particularly important for transplants in children because there are so few organs available. Organs can be obtained from dead or brain-dead individuals. Brain death is an irreversible form of unconsciousness characterized by complete loss of brain function while the heart continues to beat. Brain-dead individuals are kept alive by ventilators, without which there would be no breathing (Loewy, 1996).

Do parents have the right to sign a consent form allowing their child's organs to be donated? This has been made legal by the courts, but what is the ethical standpoint for a child who was not of sufficient age to consent beforehand to organ donation? In addition, what ethical dilemmas are posed when a child is the perfect match for a family member for the donation of a kidney or bone marrow? In these instances, the courts have allowed the organ donation since the legal consents were signed. However, is it proper for the child to undergo painful procedures in order to save the life of another person?

Another dilemma arises regarding who should receive the transplanted organs. Since human organs are scarce, value judgments are made as to which person is the best individual to receive a particular organ when several people all have appropriate tissue matches for that same organ. This dilemma is a concern for children because their social worth is only a potential since they have not yet contributed to society. However, decisions about which child receives the organ are still made according to who will receive the most benefit from the new organ (Loewy, 1996).

In some instances, organs such as kidneys and bone marrow can be obtained from living persons. One example of an ethical dilemma regarding bone marrow transplantation in children was the Ayala family. Their teenage daughter needed a bone marrow transplantation to treat her rapidly progressing chronic myelogenous leukemia. No suitable matches were found in the donor registry so the parents decided to have a baby, taking a chance that the child's bone marrow could be a perfect match. The baby was a match, and the transplant was performed successfully, saving the teenage daughters life. Ethicists are still debating the appropriateness of this case despite its success (Films for the Humanities & Sciences, Inc., 1991).

Another situation may develop when a brain-damaged child is the perfect match to donate an organ to another child. This has caused considerable debate when children born with significant birth defects that were incompatible with life were kept alive until the organs could be transplanted. In some states (e.g., Florida) transplantation from an anencephalic child (a child born without a cerebrum or other higher brain organs) is prohibited by the courts (Rhodes, 1996).

Using Children as Subjects in Research

Research into health care for children is undertaken to learn more about treatments or new procedures and is conducted in order to provide more information to help science advance. However, when a child is the subject in a research study, it is most important that steps are taken to make sure that the proper consent and assent for the child is voluntarily obtained. This is especially true when researchers give experimental drugs to children, such as when investigating new therapies for childhood leukemia.

Following the development of the Nuremberg Code in 1949, which required the voluntary consent of individuals to be part of research studies, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1979) issued the Belmont Report, in which guidelines were proposed for research involving human subjects. Informed consent and the voluntary agreement to be in a study were essential in these guidelines. Several groups of individuals were determined to be vulnerable as subjects, including prisoners, mentally ill and mentally disabled individuals, pregnant women, and children. It was determined that, whenever possible, adults would be the subjects of research before children were used (U.S. Department of Health and Human Services [DHHS], 1994).

In 1994, the latest version of the Code of Federal Regulations, Title 45 related to the protection of human subjects was issued. In this document children were determined to be individuals who had not yet reached the legal age (18 years) to consent to treatment. The policy required that children who are development ally able to decide for themselves must assent, or give their permission, to be in a research study. In addition, their parents or legal guardians must also voluntarily consent for their child to be in the study. Research cannot be done unless both parties assent and consent to being in the study. If either the child or the parent declines, the child will not be in the study. The age and physical condition of the child must be also be taken into account. In instances in which the child is unable to give assent because of very young age and/or health conditions, only consent from the parent or legal guardian is required (DHHS, 1994).

Ethical dilemmas in research arise when children are not asked for their assent to be in the study despite these guidelines. In addition, it is possible for one parent to sign a consent for their child to be a human subject in an investiga-tional study, while the other parent declines. In this case, the study can still proceed since only one signature is required. Furthermore, caregivers who are not the legal guardians sometimes refuse to allow a researcher to approach the parent or legal guardian about research when they have no legal right to prevent it.

Children's Assent to Treatment

The rights of children to health care have been established worldwide. An ethical dilemma develops when that child refuses health care. From a practical standpoint, it is obvious that health care workers would not refrain from giving care to a 4-year-old child who refuses an intramuscular injection because it is painful. However, would that same nurse withhold care at the request of an intelligent, competent 16-year-old who is dying of leukemia? It is generally established that the parents or legal guardian makes all consent decisions for their minor children. As assent to research participation is paramount, so is assent to treatment for children, or specifically, to refuse to receive care. The developmental abilities of the child must be considered first. If the child is capable of abstract thinking and can understand the consequences of the refusal to receive what would be life-saving care, then the wishes of the child may be granted (Kline, 1995). The maturity level of the child and his or her understanding of the situation must be taken into account along with the wishes of the parents so that a mutual decision is reached (Loewy, 1996). Great Britain has a law that requires that the wishes of the child be incorporated into the decision-making process (Devereux, Jones, & Dickenson, 1993). In these instances, the values of the entire family, including the pediatric client, are the primary focus of the ethical-decision-making process. The consent and assent of parents and children for treatment remain an area of concern based on the child's ethical and legal rights (Loewy, 1996). Every situation will be resolved differently.

Positive Toxicology Screening in infants

An increase in substance abuse by women during pregnancy has resulted in greater numbers of infants born with drug tests positive for cocaine, marijuana, heroin, morphine, methadone, or other narcotic substances. A dilemma develops when the positive test reveals that, not only was the infant exposed to the drugs during labor, but also throughout pregnancy. Some governmental jurisdictions view this situation as child abuse and arrest the mother. This may result in the child, who is withdrawing from the drug, being placed in foster care away from his or her biological mother. The ethical dilemma comes from the paradox between the potential criminalization of the mother and the breakup of the family by the state (Burns, 1997). Nurses need to be aware of their legal obligations regarding notification of authorities in these instances. However, they also must be aware of their obligation to care for both the mother and the infant in the best possible way. The nurse must non-judgmentally care for the mother and infant, knowing that willful actions of the mother have harmed the infant (Caitlin, 1997). For more information, see Chapter 36.

ETHICS COMMITTEES

Ethics committees have come to play a key role in resolving such dilemmas. The complexity and multitude of ethical situations confronting nursing and health care with the increase in technology and new treatments is staggering. When an individual nurse, health team member, or group is faced with difficult decisions, these situations are increasingly being reviewed by ethics committees at the hospital or agency in question. These ethics committees can assist the involved parties in achieving resolution in the ethical-decision-making process. Several basic roles for these committees have emerged and are listed in Box 2-2.

Ethics committees are usually made up of professional experts, community representatives, and those who bring a broad values perspective. Medical staff from the major specialty areas—e.g., obstetrics, neurology, and psychiatry—are needed. Nursing staff representation will usually include the director of nursing and major department supervisors. Social services representatives, a bioethicist or member of the clergy, an attorney, and a hospital board member are included to provide knowledge of the broader community and its needs as well as a moral, theological, and legal perspective.

Ethics committees are generally organized in one of three basic structures. They can be developed as a committee of the hospital's governing board, a committee that reports to the hospital's chief executive officer, or a committee responsible to the medical staff executive committee (Monagle & Thomasma, 1998) (Figure 2-4).

The consultation provided by an ethics-advisory group can vary from actual decision making to input and advice on specific ethical situations. Client and family input is presented as part of the discussion of any ethics committee if the issue is client-focused; their concerns would be represented by the nurse, social worker, and/or physician. Although the final decisions related to diagnosis and treatment have always rested with the physician, the emergence of managed care has greatly altered the practice of medicine. Increasingly, diagnostics and procedures are strictly regulated by the health maintenance organizations (HMOs), preferred provider organizations (PPOs), and other provider groups. In light of these changes, the role of an ethics committee is even more imperative in ensuring that decisions and judgments will be made that provide quality care based on moral principles rather than on economics

BOX  Roles of ethics committees

1.To educate the hospital staff on utilization of the
ethics committee and basic issues involved in eth-
ical decision making.

2.To lead multidisciplinary discussion involving the
team versus specific disciplines in ways to resolve
conflict and clarify values.

3.To allocate resources so quality outcomes are
cost effective.

4.To document and disseminate the hospital's mis
sion, philosophy, image, and community identity.

5.To formulate policies related to ethical issues.

6.To consult and assist medical and other health
care providers in difficult decisions.

Key Concepts

Sources of law include state and federal legislation, agency regulations, and case law made by judges.

Informed consent is the process used by health care providers to inform a client about the risks and benefits of a medical treatment or procedure in order to get permission from the client to provide care. In most cases involving pediatric clients, the caregiver or legal guardian provides informed consent for the child.

State and federal laws often allow children to give their own informed consent when they seek certain specialized care, such as treatment for pregnancy, sexually transmitted diseases, or drug abuse.

If a caregiver or legal guardian refuses needed medical care for a child, the state may take custody of the child and obtain medical care against the wishes of the child's caregivers or legal guardian.

Genetic testing should not be performed on a child unless the results of the test will serve the best interests of the child.

• Federal law provides strict guidelines for using children as subjects of medical experiments.

• Nurses owe a duty of confidentiality to their clients to safeguard private health information from other persons unless the nurse has the consent of the client to divulge confidential information.

• Nurses may breach confidentiality when mandated by laws that require the disclosure of child abuse, infectious diseases, and situations in which one or more persons are at risk. Key ethical theories include deontology, teleology, care theory, and virtue theory.

• Use of an ethical-decision-making process is of value in organizing thinking and clarifying issues in difficult moral situations.

• Organ donation by children is contingent on the written permission of the caregiver or legal guardian.

• Children, based on their developmental level, must give assent to be a participant in research, or to assent to or refuse treatment.

• Ethics committees can assist health care personnel in resolving difficult ethical situations since they offer a broad, community representation of viewpoints on the issue.

Review Questions

1. A nurse is volunteering at a community clinic. Where can she find out whether she is legally responsible if she does not provide the correct treatment to a child at the clinic?

2. If a nurse is permitted to give intravenous narcotics in Idaho, should she assume that she can legally give
intravenous narcotics in New Hampshire?

3. The Stone Drug Company wants to study a new antidepressant to see if it decreases sexual drive in teenagers. Would this study receive approval by an institutional review board? Why or why not?

4. You are taking care of a 3-year-old child who climbs out of the crib and falls and breaks her arm. List the steps you would take to protect yourself from a possible malpractice suit.

5. 14-year-old with osteosarcoma (bone cancer) wants to receive an experimental chemotherapy treatment that the parents refuse. How would the nurse approach this situation?

6. The caregivers of a child who has been declared brain-dead following a skiing accident must be approached with information about donating the child's organs. Who would give permission for the organ donation?

7. A physician opts to treat a developmentally "slow" teenager seen in the clinic for a sexually transmitted disease (STD) without telling her or her parents of the diagnosis. How could the nurse use an ethics committee in this situation? What must the ethics committee consider?

8. The charge nurse in the intensive care unit (ICU) chastises her nursing staff regarding participation in a
strike proposed by their union. Discuss the ethical theories relevant to this situation.

Resources

American Academy of Pediatrics

141 Northwest Point Blvd. Elk Grove, IL 60009-0927 www.aap.org

American Nurses' Association

600 Maryland Avenue, S.W., Suite 100 West

Washington, DC 20024-2571

(202) 651-7000 www.ana.org

Agency for Health Care Policy and Research

2101 East Jefferson Street Rockville, MD 20852 (301) 594-1364 www.ahcpr.gov