Shaken Baby Syndrome Education: A Role for Nurse Practitioners Working With Families of Small Children

Article Outline

• Abstract
• History of shaken baby syndrome
• Definition and incidence
• Risk factors
• Presenting symptoms and physical findings
• Long-term effects
• Legislative action
• Recommendations for education
• Current education programs
• Nurse practitioner role
• References
• Biography
• Copyright

Abstract 

Nurse practitioners providing primary care to infants and children are in the optimal position to address the risk factors and long-term consequences of shaken baby syndrome (SBS), a severe form of child abuse, with parents before the child is discharged from the nursery or when they come for well-child visits. The purpose of this article is to provide a summary of research to date on SBS, state and federal efforts aimed at educating citizens about SBS, and the role of nurse practitioners in educating the persons who are caring for these vulnerable individuals regarding the prevention of SBS.

Despite the efforts of health care providers and Child Protective Services to prevent the maltreatment of infants and children, the problem continues (Miehl 2005, National Clearinghouse on Child Abuse and Neglect Information 2004). In 2002, an estimated 906,000 children were confirmed to have been victims of maltreatment, of whom 61% were neglected, 19% were physically abused, 10% were sexually abused, and 5% were psychologically or emotionally abused (National Center for Injury Prevention and Control [NCIPC], 2005). In that same year, an estimated 1400 to 1500 children died as a result of maltreatment, or approximately 1.98 children per 100,000 children in the general population. Of these deaths, approximately 36% occurred from neglect, 28% from physical abuse, and 29% from multiple types of maltreatment (NCCANI; NCIPC). Estimated annual direct costs for judicial, law enforcement, and health care responses to child maltreatment are $24 billion, with the annual indirect costs for the long-term treatment of child maltreatment exceeding an estimated $69 billion (NCIPC).

Children younger than 4 years have been reported to be most at risk for maltreatment. Among the reported 1500 child fatalities in 2002, approximately 41% occurred in children younger than 1 year, while 76% occurred in children younger than 4 years (NCCANI, 2004). Children in this age group are at risk for maltreatment as a result of a number of developmental factors, including their small size, dependency on others, and the inability to defend themselves (NCCANI). Shaken baby syndrome (SBS), a form of child abuse resulting from the violent shaking of an infant or child usually younger than 3 years, is estimated to affect 1200 to 1600 children every year (NCIPC, 2005).

It has been estimated that approximately 50% to 60% of deaths resulting from the abuse or neglect of children are not recorded, with neglect being the most under- recorded form of fatal child maltreatment (NCCANI, 2004). Issues affecting the consistency and accuracy of reporting child fatalities have included variations in reporting requirements and definitions of child abuse and neglect, variations in state child fatality review processes, the amount of time for a fatality review team to declare the cause of death as abuse or neglect, and the miscoding of death certificates (NCCANI). For SBS specifically, challenges in identifying and reporting cases have been difficult to overcome, thereby making the true incidence rate unclear (Miehl, 2005). Among these challenges is the lack of a centralized reporting system/agency for SBS; the unclear presentation of symptoms, which can range from mild, generalized flu-like symptoms to unresponsiveness and impending death; SBS typically not being an isolated event, but rather a part of a more chronic pattern of maltreatment; and obvious signs of maltreatment not being present (Miehl).

Given these harrowing statistics, it is not difficult to appreciate the role of primary health care in the education of families of small children in the prevention of child maltreatment. Moreover, nurse practitioners, as primary care providers, are in the optimal position to provide education and guidance to new parents prior to their infant’s discharge from the nursery and during routine well-child visits in the hopes of decreasing the occurrence of child maltreatment and SBS.

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History of shaken baby syndrome 

In 1946, Dr. John Caffey described children with long bone fractures and intracranial bleeding as victims of trauma, rather than from unexplained metabolic processes, as was the thought at that time (Caffey, 1946). Further expanding on his 1946 report, Caffey (1972) summarized the radiologic and physical findings associated with child abuse and the “whiplash-shaking and jerking” of infants and young children as part of a syndrome he named parent-infant-stress syndrome or battered baby syndrome. Kempe, Silverman, Steele, Droegemueller, and Silver (1962) described the battered-child syndrome, a condition characterized in young children who received serious physical abuse, typically from a parent or foster parent, as a significant cause of childhood injury, disability, or death. Kempe et al. delineated the manifestations of the battered-child syndrome as occurring in children younger than 3 years, having marked discrepancies between clinical findings and historical data supplied by the parents, finding of subdural hematoma with or without skull fractures, and finding of a characteristic distribution of multiple fractures in different stages of healing along the long bones of the appendicular skeleton. Guthkelch (1971) linked the injuries caused by such whiplash shaking to the biomechanical processes involved in severe forms of head trauma. Since that time, the phenomenon of long bone fractures, intracranial bleeding, and retinal hemorrhages, often with no noticeable outward signs of trauma, has been named shaken baby syndrome (SBS) (Brooks and Weathers 2001, Carbaugh 2004). More recently published reports have primarily focused on the signs and symptoms of SBS, risk factors related to SBS, and methods in which to raise awareness and to decrease the incidence of SBS.

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Definition and incidence 

SBS is a severe form of child abuse in which an infant or young child’s upper body is violently shaken, producing a range of symptoms and sequelae dependent on the duration and intensity of the shaking (Carbaugh 2004, Gutierrez et al 2004). The severity of the shaking is generally attributed to the perpetrator’s tension and frustration levels (Miehl, 2005). Although exact numbers are unavailable and often are difficult to determine, it is estimated that approximately 1000 to 1500 infants and young children are victims of SBS each year (Nakagawa and Conway 2004, National Center for Injury Prevention and Control 2005). Of the overall number of SBS victims, approximately one third will experience no long-term effects, approximately one third will experience profound mental and physical problems, and approximately one third will not survive their injuries (Hennes, Kini, & Palusci, 2001; NCIPC).

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Risk factors 

Children from birth through age 4 years have been identified as being the most vulnerable age group for experiencing SBS. Physical and developmental attributes increasing the risk of SBS in this particular age group include disproportionate anatomy (large head, weak neck), lack of or inability to properly communicate needs, and inability to protect the self from the larger, stronger adult (Brooks and Weathers 2001, Castiglia 2001). Additional factors increasing the risk of SBS in infants include younger age, male gender, inconsolable crying, colic, temperament, prematurity, and the presence of special medical needs (Carbaugh 2004, Davies and Garwood 2001, Hennes et al 2001).

Other factors increasing the risk of the occurrence of SBS include the perpetrators and the environment. Perpetrators of SBS often include the biologic father, the mother’s boyfriend, a babysitter or other caregiver (e.g., day care provider or other family members), and the mother (Carbaugh 2004, Hennes et al 2001). The most common personality characteristics of SBS perpetrators include, but are not limited to, male gender, younger age at time of parenthood, single parenthood, lack of child care experience, improper expectations of child development, low formal education level (often less than 12 years), increased physical and psychological stress, history of or current state of mental illness, current or past substance abuse, presence of domestic violence, and a history of abuse or abusive behavior (Carbaugh; Castiglia 2001, Davies and Garwood 2001). A number of environmental factors contributing to the occurrence of SBS also have been identified. The most common environmental factors contributing to SBS include, but are not limited to, low socioeconomic status, lack of community resources, unsafe neighborhood, social isolation, lack of external support from family or government agencies, poor prenatal care, decreased or poor marital satisfaction, poor family functioning, and frequent moves (Carbaugh). Table 1 identifies common risk and protective factors related to both SBS and child maltreatment.

TABLE 1. Risk and protective factors for SBS

Data from Carbaugh 2004, Davies and Garwood 2001, Hennes et al 2001, National Center for Injury Prevention and Control 2005

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Presenting symptoms and physical findings 

Many of the common presenting symptoms of SBS frequently mimic common ailments of infancy and childhood and may include unexplained seizures, posturing, listlessness, irritability, vomiting, alterations in level of consciousness or muscle tone, apnea, bradycardia, large head circumference, bulging or full fontanels, hypothermia, poor feeding, and failure to thrive (Brooks and Weathers 2001, Carbaugh 2004, Listman and Bechtel 2003, Nakagawa and Conway 2004). Radiologic and other physical findings may include intracranial shearing injuries resulting in the lack of gray-white differentiation on imaging studies; intracranial bleeding; interhemispheric and subdural hemorrhages/hematomas in the parieto-occipital region; cerebral edema; retinal hemorrhages, often occurring in multiple layers of the retina and with a flame-shaped appearance; cervical spine or neck injuries; rib, skull, or other long bone fractures unexplained by history; abdominal injuries; and bruising of the upper torso, although not present in all cases or noticeable immediately (Carbaugh; Gutierrez et al., 2004; Listman & Bechtel; Lundeen, 2001).

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Long-term effects 

The long-term consequences associated with SBS involve impaired mental, physical, and sensory development. Potential long-term consequences of SBS may include mild to profound mental/cognitive impairments, visual impairments, blindness, seizure disorder, developmental delays, motor dysfunction, spasticity, quadriparesis, cerebral palsy, hearing loss or impairment, hydrocephalus, or microcephaly (Castiglia 2001, Gutierrez et al 2004, Nakagawa and Conway 2004). The long-term outcome of SBS survivors often depends on the severity of symptoms at the time of presentation, with those presenting with apnea, seizures, and coma being more likely to have developmental delays, seizures, and static encephalopathy (Listman & Bechtel, 2003).

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Legislative action 

Since its adoption and implementation, the federal Child Abuse Prevention and Treatment Act (CAPTA) of 1974 has assisted states and communities in improving practices in preventing and treating child abuse and neglect. Funds from the Act have allowed state governments to receive grants for the support of improvements in state child protective services and community-based prevention services. In addition, these grants have provided for research, training, data collection, and evaluation of child abuse prevention and treatment programs (Child Welfare League of America [CWLA], 2002). To receive federal grants for programs, states are required to have mandatory reporting laws for child abuse, preservation of victim confidentiality, appointment of guardians for victims, and established citizen review panels. CAPTA programs are intended to assist children of any age, and income or other eligibility requirements for individuals receiving assistance are not imposed (CWLA).

In late 2001, the state of New York implemented a law requiring the provision of information on the causes, consequences, and prevention of SBS to all new parents prior to discharge from the nursery/hospital (National Center on Shaken Baby Syndrome [NCSBS], 2001). This SBS information was in addition to all existing general information provided to new parents upon the birth of a child. This original program sought to ensure that new parents received the SBS information during the postdelivery stay in the hospital. A videotape and brochure on SBS were provided to the parents by a maternity nurse, after which the nurse returned to the parents to obtain an evaluation form and have the parents sign a commitment statement (NCSBS, 2001). In addition, follow-up calls 6 to 7 months after discharge were obtained to evaluate retention of the SBS information by the parents (Dias et al 2005, National Center on Shaken Baby Syndrome 2001). Results of this initial follow-up period indicated that the majority of parents thought the information was useful and would recommend that the information be provided to all new parents (Dias et al.; NCSBS). In addition, a significant (60%) decrease in the incidence of SBS occurred in the regions of Western and Upstate New York served by the Dias program (NCSBS, 2001).

The results of a 6-year evaluation of the Dias (2005) hospital-based program recently have been released, indicating a significant decrease in the incidence of SBS in the six-county region surrounding the Rochester, New York area. The authors prospectively tracked the regional incidence of abusive head injuries among infants and children younger than 36 months during the period from December 1998 through May 2004. The incidence of abusive head injuries during this 66-month study period was contrasted with the regional incidence during the preceding 60-month period of December 1992 through November 1998 and with the incidence rates in the Commonwealth of Pennsylvania during the years 1996 through 2002 (Dias et al.). All suspected cases of abusive head injury during these time periods were reviewed, in detail, by the same multidisciplinary team, using a common definition of abusive injury. Results of the 66-month study period indicate a decrease of 53% in the number of cases per year, from an average of 8.2 cases to 3.8 cases per year, and a decrease of 47% in the number of cases per 100,000 live births, from an average of 41.5 cases to 22.2 cases per 100,000 live births. Further, the statewide incidence rates for abusive head injury for the Commonwealth of Pennsylvania from 1996 through 2002 did not significantly change during this time period (Dias et al.). As a result of these findings, the program has been expanded to include the Commonwealth of Pennsylvania, where a statewide mandate to provide the program to parents of all newborn infants currently is in effect. The program in Western New York is now in its second phase, where the hospital-based information is supplemented with additional information and a second commitment statement to be provided to parents at the time of the first visit with the infant’s pediatric care provider (Dias et al.).

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Recommendations for education 

Although the focus of much of the literature has been on educating health care professionals regarding the mechanisms of injury, risk factors, and sequelae of SBS, the literature also has supported programs aimed at the prevention of SBS through primary prevention and education of families and others caring for young children. Alexander and Smith (1998) state that the best SBS prevention strategies are those directed at prevention of physical abuse, such as through Healthy Families America, a national effort aimed at developing programs for helping parents of young children to better understand child development and offering support to these parents. Other methods for preventing SBS include the incorporation of SBS education by health care professionals to parents during routine office visits, during prenatal visits, during prenatal classes, and prior to leaving the hospital following the delivery of a child. Other recommended methods of educating other potential child care providers could be provided through babysitting classes, community-wide education seminars, and routine school courses such as health and family living (Carbaugh 2004, Gutierrez et al 2004, Nakagawa and Conway 2004).

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Current education programs 

The largest and best known SBS education and prevention program in place today is the Never Shake a Baby campaign that originated in Ohio in 1989. The original “Don’t Shake the Baby” project reached a total of 15,708 parents of newborns through six medical facilities with licensed maternity units in one Ohio county during a 12-month period in 1989 (Showers 1992a, Showers 2001). Parents were provided with print material addressing how to cope with crying infants and the dangers of shaking. Twenty-one percent of parents returned evaluation data and indicated that the material was helpful to the majority of respondents and that the information should be provided to other parents (Showers 1992a, Showers 2001). Ideas from this program subsequently have expanded to all 50 states and have been adapted to meet the needs of community residents (e.g., brochures have been translated into different languages, cultural differences and sensitivities have been taken into consideration, and language has been simplified). Generally, this program utilized print packets containing brochures and cards describing strategies to manage crying infants and the parent’s increasing level of frustration, videotapes with information about SBS, television and radio public service announcements, and various-sized Never Shake A Baby posters for use in offices, classrooms, and billboards (Showers 1992b, Showers 2001).

The National Center on Shaken Baby Syndrome has several educational programs aimed at current and future parents. One such program, Dads 101, targets men in the military, prison, and youth halfway houses, and coordinates services with hospital prenatal courses (Gutierrez et al., 2004). The program started as a result of studies that implicated men as the perpetrators of SBS in the majority of cases (NCSBS, n.d.-a). Dads 101 provides fathers with information in the form of fliers, handbooks, brochures, and posters aiming to raise awareness of their role as a nurturing individual by challenging the stereotypes that fathers are not capable of nurturing. A safe environment where the fathers can discuss the fears and concerns surrounding fatherhood is provided, and the participants leave the program feeling confident and comfortable in caring for young infants, thereby decreasing stress that can eventually lead to shaking (NCSBS, n.d.-a).

Another program offered by the NCSBS targets junior high and high school students in the schools. The basic premise of this program is to provide the students with a basic understanding of SBS by educating them about the medical aspects of shaking an infant, anger management skills, and child care skills. The program includes the viewing of a videotape, Elijah’s Story, and presentation of detailed information about shaking injuries, including the mechanisms and forces involved. The information provided is taught at the students’ level of understanding (NCSBS, n.d.-b).

The most recent program implemented by the NCSBS is the Period of PURPLE Crying. The letters in the acronym PURPLE describe behavioral characteristics through which normal babies progress and that parents and caregivers often report as frustrating: Peak of crying during the second month and decreasing thereafter; Unexpected crying that comes and goes for no apparent reason; Resists soothing efforts by caregivers; Pain-like face, whether they are in pain or not; Long-lasting crying for 30 to 40 minutes or longer; and Evening crying (NCSBS, 2004). The program was implemented in May 2004 and is scheduled to continue through 2007. It is designed to change parents’ knowledge and behavior and to present health care providers with the skills and materials necessary to simply and effectively educate parents about infant crying. The hope of this program, therefore, is to decrease parent frustration and stress that ultimately lead to the shaking and abuse of infants. If this pilot program is successful, implementation across the United States and Canada will occur (NCSBS).

Healthy Families America, a program developed by Prevent Child Abuse America in 1992, provides supportive home visits to parents of small children to strengthen the family unit. The program has grown into a nationwide effort with the following three overarching goals: promoting positive parenting, improving child health and development, and preventing child abuse and neglect (Prevent Child Abuse America [PCAA], 2002). In addition to these three goals, the program aims to improve family health, enhance school readiness, and increase self-sufficiency. The program uses a flexible approach to the home visits, thereby enabling communities and states to define the target populations according to their needs. Many if not most participants are single parents. Other needs identified in participants include living in relative isolation with no social support network, and struggling with substance abuse, mental illness, current or past family violence, unstable housing, joblessness, and poverty (PCAA).

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Nurse practitioner role 

The role of the nurse practitioner in educating parents and caregivers of young infants and children on shaken baby syndrome is multifactorial. The nurse practitioner, as a primary care provider, is in the optimal position to address this issue with parents before the child is discharged from the nursery or when they come for well-child visits. Also, most communities have education programs available for parents and caregivers with which nurse practitioners can become involved. Schools that offer health or family living courses are another source of information dissemination for the prevention of child abuse, specifically SBS. Education materials for these initiatives are available from a number of local and national organizations, some of which are listed in Table 2.

TABLE 2. Web resources for SBS programs/information

Nurse practitioners can, through the use of anticipatory guidance during routine well-child visits, educate parents on the risks and dangers of shaking an infant. Educating parents about basic growth and development and such developmental challenges as crying, eating/feeding, toileting/toilet training, and sleeping will help them in forming proper expectations of normal childhood development. Anticipatory guidance materials are available through such organizations as Bright Futures and are available in both English and Spanish (http://www.brightfutures.org). Information on common developmental issues/problems also is available to both health care providers and parents through many pediatric hospitals, so nurse practitioners can consult or refer families to these organizations for further information.

Education materials specific to shaken baby syndrome are available through a number of organizations, including Prevent Child Abuse America (http://www.preventchildabuse.org), the American Academy of Pediatrics (http://www.aap.org), and the National Center on Shaken Baby Syndrome (http://www.dontshake.com). Each organization provides materials to health care professionals, parents, and/or other child care providers, usually at a fee per brochure, pamphlet, poster, or book (Table 2). The National Center on Shaken Baby Syndrome, in addition to providing brochures and pamphlets for health care professionals and parents, has the teaching materials for both the Dads 101 and school-based curricula. The Center also provides SBS education guides for child care providers, investigators, and Child Protective Service workers in the form of CD-ROM discs, books, videos, posters, and pamphlets. Persons interested in teaching SBS education and prevention courses also have access to the following demonstration materials through the Center: dolls, diaper bags, crying audio tapes, and a visual overview CD-ROM.

Nurse practitioners in most states have access to a representative of Prevent Child Abuse America and Healthy Families America to find out more about available programs in his/her area of residence or practice. Healthy Families America provides train the trainer courses for anyone interested in conducting home visits for this organization. Nurse practitioners can become members of these organizations to stay apprised of current trends in child abuse.

Evaluation of prevention programs also is a large part of advanced nursing practice. Nurse practitioners can become involved in local efforts to educate parents, children, and the community about shaken baby syndrome, as previously stated. Nurse practitioners also can become involved in the collection of data regarding the success of these programs/efforts by documenting teaching done at well-child visits, monitoring the number of children presenting to the office and/or emergency room for evaluation of potential abuse/SBS, and participating in national education efforts through such organizations as the NCSBS. By assisting in the national and local efforts of educating parents and other caregivers on the dangers of shaken baby syndrome, nurse practitioners can contribute to the increased knowledge and awareness of this form of child abuse and, eventually, to the decrease in its incidence.

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