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Child and Youth Disability: Prevention, Primary and Secondary

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Donald J. Lollar, Ed.D., Professor
Department of Public Health and Preventive Medicine, School of Medicine,Oregon Health
and Science, University, Portland, Oregon USA

Abstract: Public health addresses the health of children and youth beginning with optimizing the health of the mother prior to pregnancy, called preconception care; and then focuses on the health of the child and those factors that affect early development during infancy and preschool years. As part of these activities, maternal and family dynamics are highlighted, as well as causes of injuries among children and youth. Obesity reduction is also currently a major prevention effort among children and youth in the US. All of these public health activities are attempting to provide a healthy start for children. In spite of all best efforts, some children will be born with or come to experience disabling conditions. Public health also has a responsibility to encourage the health and well-being of children and youth that live with disabling conditions, as well as providing public health activities that support the families of these children and youth. This paper will provide an overview of public health issues,activities, and emphases related to the primary prevention of birth problems and injuries among the general population, along with a synthesis of activities addressing health promotion and preventing secondary conditions among children and youth living with disabilities and support for their families.
Preconception Health
Negative health outcomes that affecting both pregnant women and their children continue to be a global problem. In the United States, 30% of women experience problems during pregnancy. Twelve percent of babies are prematurely born, 8% are born with a low or very low birth weight, and 3% are born with significant birth problems (CDC, 2006). Many prospective mothers do not get prenatal care until after they know they are pregnant; often late in the first trimester or sometimes afterward. Birth problems that could be averted with appropriate preconception care, therefore, are not. Preconception care services need to be made available to women and couples so as to improve outcomes for both mothers and their infants. This is particularly important since almost half of pregnancies in the US are not planned. CDC‘s National Center on Birth Defects and Developmental Disabilities recommends five general directions for preconception care for mothers-to-be (CDC, 2010b). The five steps to prepare for a health pregnancy include:
1. Take 400 micrograms (mcg) of folic acid every day for at least 1 month before getting pregnant to help prevent birth defects.
2. Stop smoking and drinking alcohol.
3. If you have a medical condition, be sure it is under control. Some conditions include asthma,diabetes, oral health, obesity, or epilepsy. Also be sure that your vaccinations are up to date.
4. Talk to a health care professional about any over-the-counter and prescription medicines you aretaking. These include dietary or herbal supplements.
5. Avoid contact with toxic substances or materials that could cause infection at work and at home.Stay away from chemicals and cat or rodent feces.
These interventions require numerous public health activities. They include public health education messages through various media. In today‘s technologically advanced world, the opportunity to communicate with the 62 million women of childbearing age in the US, particularly the younger ones,is greatly enhanced by social netw rks and ubiquitous cell-phones and computers accessing the World Wide Web. In the US, as I am sure also in China, much information is available. Getting women to access the information is often the challenge.
The panels that convened for the preconception conference identified 14 risk factors for adverse outcomes of pregnancy. They can be divided into four basic groups, including
1. Use of drugs, including alcohol and smoking
2. Nutritional issues, including obesity and lack of sufficient folic acid
3. Adjustment or cessation of certain prescription medications, including medications to treat epilepsy, acne, coagulation difficulties and hypothyrodism
4. Managing clinical conditions, including diabetes, hepatitis B, HIV/AIDS, maternal phenylketonuria (PKU), rubella, and sexually transmitted infections (CDC, 2010b).
Health care professionals also must be vigilant in their interactions with women of childbearing age to continue to guide and counsel them about the risk factors and steps toward a positive pregnancy. Women who have had previous birth complications and are therefore at greater risk for future adverse outcomes should also be a group for targeted interventions. Finally, schools and postsecondary educational institutions have a responsibility to provide information and guidance, as requested, toyoung women.

Prevention during childhood and adolescence
Primary prevention of birth problems through timely and substantive interventions is an important agenda for public health activities. In spite of the best of intentions and interventions, children, even those born healthy, will continue to be vulnerable to environments and circumstances that are associated with disabling conditions. Specific risk factors for adverse health outcomes include maternal and/or family dysfunction and injuries during the period of childhood. Of course, genetic and environmental factors also affect the child and can impact health in dramatic ways. Genomics as a public health focus is emerging, but will not be a focus in this paper. Traditional environmental factors, such as air quality, certainly contribute to childhood health, affecting respiratory function in outcomes such as asthma and allergies. These factors are more appropriately covered in a more
focused presentation on the variations among environmental variables affecting health of children, so will not be considered here.
The relationship between mother and child is the foundation for both physical and emotional health of both parties. Whatever the etiology, in the US, 10-15% of mothers experience depression during the first year of their child‘s life. This translates into 400,000 infants being affected by the mother‘s emotional condition. This is an important public health issue because moms who are depressed are less likely to engage in activities to promote the child‘s positive development, such as playing with the child and stimulating sensory and motor capacities. Public health education that encourages mothersto be aware of this potential is important prenatally. Of course, the mental health emphasis is often a
delicate issue in societies, including the US. Individuals are often disinclined to acknowledge any emotional problems for fear of being ostracized or socially isolated. Screening for depression among mother‘s during the first year of their child‘s life can be initiated by the obstetrician/gynecologist that the mother may see for her own check-ups or assessment can occur during the child‘s pediatric visits that usually routinely occur during the first few years of a child‘s life.
Beyond maternal postpartum depression other family related circumstances have emerged as affecting a child‘s health both during childhood but especially during adulthood. Public health data on maltreatment, including abuse and neglect of children, suggests that 3.3 million reports of these events occurred in the US in 2008. Children younger than four years of age are at greatest risk of dying from child maltreatment, with infants less than one year old accounting for 44% of the deaths. This is not a statistic with which any country can be proud. It does, however, suggest that the factors contributing to maltreatment should be and are being addressed as public health issues. This is certainly a problem associated with numerous social factors, including substance abuse, lower levels of education,
dysfunctional family dynamics, and lower socio-economic resources, among others. This
maltreatment is part of a broader spectrum of adverse childhood experiences that have been found to contribute to long-term negative health effects.
These experiences include not only abuse and neglect, whether physical or emotional or sexual, but also household dysfunction related to substance abuse, mental illness, parental separation or one member of the household being in jail or prison. Adverse Childhood Experiences (ACE) includes data from more than 17,000 adults from a health care plan between 1995 and 1997 (CDC, 2010a). This original cohort is continuing to be followed, according to the US Centers for Disease Control and Prevention, for further analysis. An ACE score was derived by adding the number of experiences reported by the individuals retrospectively. As the ACE score increased, the risk for health problems
ncreased in a dose-response pattern—that is, the higher the score the more health problems are reported. Among the negative health outcomes associated with the ACE scores are chronic obstructive pulmonary disease (COPD), depression, ischemic heart disease, liver disease, suicide attempts, and sexually transmitted diseases. Public health interventions are self-evident—that is influencing factors that contribute to child maltreatment and family dysfunction. Parent education and support for families in vulnerable conditions is a major thrust of public health research and programs.
Injury prevention
Injuries also are a possible source of disability etiology among children. Falls is the leading cause of non-fatal injuries for all children ages 0-19 in the US. Almost three million children are affected. Motor vehicle accidents affect many children each day with 3600 being treated in emergency rooms. Motor vehicle accidents are the leading cause of injury for children and youth ages 5-19. Spinal cord injury and acquired brain injury are two long term disabling conditions often a result of motor vehicle accidents. Finally, accidental burns involve 435 children each day as emergency room reports show. Substantial burns create long-term physical and emotional changes among many children.
An explosion of weight has occurred in the US, and perhaps more globally than we would like, during the past decades. The prevalence of obesity among children and youth in the US is alarming and a clear public health crisis. The rates of obesity (BMI > 30) for preschool children ages 2-5 is 10.4%. Beyond preschool, the rates are even higher—school-age children ages 6-11 show 19.6% obese with only a slight drop to 18.1% for adolescents ages 12-29. Obesity, of course, is a major risk factor for disabling conditions, including high blood pressure, high cholesterol and type 2 diabetes. Of equal concern is the data that show if obesity begin before age 8 for a child, adult obesity is a higher probability. The medical costs, along with the human costs in limitations related to mobility, vision, and even premature mortality are substantial.
Interventions focus on the contributing factors to this meteoric rise in prevalence among children. Reducing the consumption of sugar-sweetened drinks is a major emphasis for public health activities, which means engaging the producers of the drinks, the schools that make the drinks so easily accessible, and parent and child/youth education about the need to reduce energy intake and increase physical activity. With the advent of computers, video game consoles of all varieties, and ever-present television, young people are often less engaged in physical activity both indoors and outdoors. Children and youth ages 8-18 average a little more than three hours of television, dvd, etc. watching per day. This perfect storm of circumstances—poor nutrition, decreased physical activity, and increased sedentary behavior—has contributed substantially to obesity, beyond the genetic factors that may predispose one toward overweight. But it is also clear that genetic factors are not the primary
contributor to our current societal dilemma. Parent, schools, businesses, and governments will have to coordinate efforts to decrease this trend. And, of course, this trend is also true for adults in the society.
Developmental screening for early identification and intervention
We will not in the foreseeable future prevent all birth problems with preconception interventions or have all children born into a healthy home and family environment. The activities previously described will continue to be an important part of the public health agenda. In addition to these primary prevention interventions, another major public health emphasis must be the early identification of difficulties experienced by children. As already described, children will fall through our public health primary prevention net. Developmental screening is an important part of preventing secondary conditions associated with birth or developmental problems.
Within the first days after birth, there has been a major emphasis in the US to identify children with hearing difficulties. This is analogous to the early blood spot analysis to identify metabolic disorders, such as phenylketonuria, immediately after birth. This program has shown significant growth over the past ten years, moving from 47% of children being screened in 1999 to 97% being screened in 2007. The Early Hearing Detection and Identification program identifies those infants with potential hearing difficulties and refers them for full audiological evaluations in the first three months of life, with intervention beginning by the sixth month of life. Early identification allows early intervention
that reduces the need for special education services later.
An added screening schedule has been proposed by the American Academy of Pediatrics (AAP). The AAP has recommended that pediatricians or family physicians (or nurses in their offices or clinics) seeing children in their practice complete a standardized developmental screening tool at 9 months, 18 months, and 30 months of age during routine well visits (AAP, 2006). In addition, during other visits these health care professionals perform surveillance that means asking a question, such as ―Do you have any concerns about your child‘s development, behavior, or learning?‖ This king of general question allows the parent to provide information that the health professional may not observe during a visit. If the parent responds in the affirmative, a developmental screening tool is completed, even if the health professional sees no problems. This is under the assumption that parents know their child
better than professionals, even though some parents may be overly protective. If the creening
indicates developmental problems, a referral is made for a full developmental evaluation in order to identify specific difficulties, such as motor, communication, socialization, learning, or emotions.
In the US today there is a strong movement to screen all children for the presence of any problems associated with the spectrum of conditions labeled ―autism spectrum disorders‖. The American Academy of Pediatrics has recently recommended screening for this set of childhood difficulties. Follow up evaluation, of course, is included in the recommendations. (Johnson, Myers, et al., 2007). A third screening program identifies adolescents with mental health problems, specifically young people that are depressed. Data suggests that 15-20% of adolescents in the US experience major depression at some point during the adolescent years. Twenty-nine percent of 9-12 graders (high school age in the US) report high levels of feeling sad, with females twice as likely to report such problems Depression among adolescents is associated with limitations in school performance, social interactions, and suicide (Williams, et al., 2009). School health programs and medical practices and clinics in the US are encouraged to screen youth for depression since so often youth with depression
are not identified, and if they are, they do not receive interventions (Zuckerbrat, et al., 2007). Referral to appropriate community mental health professionals should be implemented so that follow-up treatment can be initiated.
Primary prevention interventions
This paper has presented a rather straightforward accounting of various birth, child, and youth problems associated with preconception and prenatal behavior, family issues, adolescent development and societal factors interacting to be associated with disabling conditions. This section will focus on some positive outcomes associated with interventions. In addition, we will address the prevention of secondary conditions associated with child and youth disability and a framework for bringing together primary and secondary prevention efforts.
When the studies showing folic acid to be a protective factor for neural tube defects, it was the first time that an intervention had evidence of its effectiveness. Public health officials in the US were excited to have such clear evidence of folic acid‘s utility in preventing these problems. The Public Health Service announcement that women of childbearing age should take 400 mcg of folic acid each day was widely distributed. The work to implement this behavior among women has required several approaches. Fortification of ―enriched" products in the grocery stores was the most far-reaching public health intervention. One hundred micrograms has been required to be included in all grains and flours using the term ―enriched" to describe its product. As fortification was implemented, rates of neural tube effects subsequently were reduced. Currently, it is projected that 75% of cases of spina
bifida are prevented among these mothers. In addition to fortifying flour and grains, encouraging women to take a multivitamin including 400 mcg has been a second approach. This approach has been encouraged by several industries marketing vitamins as a product. Whether by fortification, supplementation, or by eating foods high in folate, women who have birthed children with neural tube defects have been a particular target of interventions, emphasizing 1000mcg of folic acid would be helpful prior to getting pregnant again. Finally, rates of neural tube defects was found to be higher in Hispanic women so that educational messages on spanish-language radio stations and print media in Hispanic communities have been a strong public health emphasis in recent years.
Injury prevention among children and youth is one major thrust of public health activities, with
particular emphasis on those causes of injury associated with long-term conditions. Falls, burns, and motor vehicle accidents are particularly highlighted. Environmental factors are often associated with injuries and gain the greatest attention from public health professionals—including safe playground equipment, guard rails and stair gates. Smoke alarms and helping children know about an escape plan for the family are important emphases to address burn prevention. Motor vehicle safety is of crucial importance, and includes several levels of attention as children grow. Rear facing seats until age one,
appropriate restraints until age eight, and sitting in the back seat under age 12 are all strong
recommendations and public health messages throughout the country.
Preventing secondary conditions
Throughout the past ten years, research to ameliorate the functional problems associated with fetal alcohol syndrome (FAS) has been evolving. Behavioral and educational therapies have been of particular interest. Social and family relationships have been highlighted, emphasizing developing interpersonal skills/friendship training and helping parents interact more effectively with their young person living with FAS. Behavior management techniques have been taught along with more effective play strategies for parents and children. Finally, increasing math skills, a particular difficulty among this population, and executive functioning or problem solving skills have been addressed. These interventions focus on both the individual young person (math and problem solving), along with parent and family interventions to improve parenting skills. In these cases, the parents and families are
part of the child or youth‘s environment, beyond just the physical environment.
As indicated previously children and youth who live with disabling conditions will be part of the population for the foreseeable future. Our primary prevention activities will never stop all injuries, birth or developmental problems, and it is my contention that public health has a responsibility to target this group of young people and their families as they would any other vulnerable population. Public health has traditionally assigned this group of children and adults to medicine or rehabilitation medicine, thereby absolving themselves from responsibility to include this group in the general population for which public health interventions occur. In Article 23 of the United Nations Convention on the Rights of the Child (UN, 1989), the mandate to include children with disabilities is clear. The United Nations‘ definition of health includes well-being and not just the absence of illness and the
presence of physical, social, and emotional health. Article 23 states that children with disabilities should enjoy a full life under conditions to ensure dignity, self reliance, and participation in the life of the community. It further mandates the right to special care and assistance for themselves and their family caregivers. Finally, there is a recommendation that they should have access to education, training, healthcare, rehabilitation and services to achieve social integration and individual development. Public health needs to be a willing and strong partner with other national sectors and community groups to ensure these rights for children with disabilities.
In the US our public health efforts on behalf of children with disabling conditions has too often only included preventing the conditions with which children may be born or come to experience early in their lives. Again, this is a noble effort, but is incomplete if health promotion and prevention of secondary conditions activities are not implemented. The Maternal and Child Health Bureau Office of Children with Special Health Care Needs recognized this need some 25 years ago. Realizing that focusing on specific diagnostic conditions did not meet the needs of children and youth with diverse conditions, they broadened the definition to focus on the consequences of the conditions rather than the
specific conditions. This definition was finally published in 1998 (McPherson, Arango, et al., 1998). Consistent with this emphasis on broader definitions of children with special health care needs, the recent National Survey of Children with Special Health Care Needs included items to assess the functional characteristics of these children, beyond just diagnosis. Fourteen percent of children in the survey were identified with special health care needs. Five functional problems that were most prevalent included: respiratory difficulties (42.7%), learning difficulties (41.0%), anxiety/depression (28.7%), behavior difficulties (28.3%), and speaking/communication (22.6%).
For public health professionals, this is an unfamiliar way to describe children with disabilities. The traditional emphasis on diagnosis is important when primary prevention activities are being addressed. Diagnostic categories for children often provide such small prevalence rates that children‘s needs are lost for lack of numbers large enough to gain attention. However, when public health moves to preventing secondary conditions among this population, the actual functional difficulties provide a clearer and more complete picture of the similarities across children and youth—rather than focusing on the differences in etiology. Of course, we can easily equate respiratory difficulties with asthma or allergies as diagnosis. But as we know in the US, environmental conditions often contribute to respiratory difficulties with differing diagnoses. We certainly do not know the etiology of the learning problems reported by 41% of the children‘s parents. And from a public health perspective, the reason is
less important than realizing that our public health interventions need to take learning into
consideration as we develop public health messages. Mental health issues are clearly experienced by many of these children and youth and public health interventions may need to be tailored for children and youth for whom depression, behavior, and friendships are the primary concern versus those young people who experience another disabling condition, such as cerebral palsy, and for whom the mental health issues are a secondary condition. Healthy People 2010, the health agenda for the US developed every 10 years, reports that 31% of youth with disabilities report feelings of sadness or depression compared with 17% of youth without disabilities (DHHS, 2000).
Public health interventions addressing the prevention of secondary conditions and health promotion for children and youth with disabling conditions are only beginning to develop. The broad strategies include health professionals, education and social service professionals coordinating efforts with the goal first of helping youngsters meet appropriate developmental milestones. Above all, the professionals must have respect for the child and family—understanding that this family is part of the human family and experiences the same dynamics and expectations as every other family. The presence of a disability in a child, youth, or adult for that matter, may require a different perspective on engagement, but that family is still a part of the community and school and workplace in which they live. This will usually require helping parents and families to have higher expectations than is sometimes seen and to use their creativity and persistence to help their children. Part of the creativity
will include being aware of barriers in the environment that hinder a child‘s participation in their world. In particular, there may be barriers to the child or youth developing autonomy in dealing with their own health problems, both those related to their disabling condition and their general health care.
Clinical preventive services are those services related to screening for medical conditions,
immunization and counseling (US Preventive Services Task Force, 1996). Children and Youth with developmental disabilities in the US often do not receive annual health screenings. Youth with disabilities are at greater risk for coronary disease related to less physical activity associated with mobility problems, nutritional disorders, emotional problems, and vision and hearing problems. Public health‘s responsibility may be to assure that this vulnerable group has access to appropriate services. In addition, public health is responsible for preparing health care professionals to be respectful of this population. Attitudes of health professionals must be inclusive of children and youth with disabling conditions. Listening to the responses of youth with disabilities and helping them grow in self-determination, particularly related to their health, is crucial. A secondary condition that professionals should be sensitive about is that of exploitation—whether physical, emotional, or sexual. Disabled youth can be exploited whether it involves time, money, work, or even sex, due to their often
trusting of others. Health professionals should be a front line in identifying and helping youth with disabilities to be protected as they grow in independence (Lollar, 2006).
Family Support
Public health professionals often have the same attitudes as the general public in the US. Children or youth with disabilities and their families experience a family tragedy. Community responsibility is not accepted except as the family feels they are being helped by charity. In the past two decades, a new resolve has emerged within families in the US. Families are standing and asking, even demanding, that the needs of their children and themselves be taken seriously by governmental entities and community organizations. They have organized more and more to support one another and provide consultation to professionals and governmental units that are providing what services there are. The goal, of course, is
that children and youth and their families have the opportunity to participate in all activities of their community. Public health often suggests that anything beyond primary prevention is not their purview. If WHO‘s definition of health is accepted, then public health has a responsibility to attempt to prevent disabling conditions and also to promote the health and prevent secondary conditions of children and youth with disabilities.
Integration of clinical and public health activities
Over the past ten years, the World Health Organization has also acknowledged that public health must move beyond diagnostic categories in its programs, policies and science. The World Health Assembly in 2001 approved a second classification system that focuses on functional characteristics associated with health and disability. The International Classification of Functioning, Disability and Health (WHO, 2001) provides a conceptual framework and coding scheme that will allow public health professionals to broaden their activities focusing on functional characteristics. The opportunity to include people with disabilities in public health is now present. And with this new framework, we have
a greater opportunity to work across disciplines, sectors, and even national boundaries.

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