Implementation Plan for the ONF Shaken Baby Syndrome Prevention Project Richard Volpe and Helen Thomas June 24, 2004 The following is a plan for a full scale implementation of the Upstate New York Shaken Baby Prevention Program described as a best practice by Hunchak (Volpe and Lewko, 2004). This program has now achieved its sixth year of incidence reduction in New York State (Dias, JAMA, in process) and has had widespread use throughout North America. We have enlisted Dr. Dias (now at Penn State) and the New York Program team as partners and have prepared the following “slow scale up” implementation plan with their consultation and input below. Timeline: September 1, 2004 to August 31, 2008
General Aim: To implement a province-wide primary prevention program for shaken baby syndrome. Objectives: 1. Provide a standardized training program for neonatal nurses beginning in one hospital in the GTA and a radiating implementation that will include a public health delivery mode (Healthy Babies, Hamilton) and a community-based delivery mode (midwives; office and clinics, North Bay and Sudbury). 2. Track compliance with the program through analysis of the number of deliveries, signed commitment statements, and type of signatories. 3. Evaluate program impact on incidence of abusive head injuries by contrasting province-wide incidence of substantiated head injuries in the study years with the preceding four years. 4. Examine temporal changes in incidence rates in other Canadian provinces and in the US (New York and Pennsylvania). 5. Profile participating nurses in terms of their relationship-building skills and biographies. 6. Provide a Canadian based cost analysis of shaken baby syndrome in terms of treatment and long term care. Program Overview Shaken Baby Syndrome Shaken Baby Syndrome describes the association of brain injuries, subdural hemorrhage or other bleeding within the head, and retinal hemorrhages. Shaken Baby Syndrome usually causes some alteration in the level of consciousness ranging from
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irritability to coma. Although controversy exists whether shaking is enough to cause severe injury without actually striking blows to the head, SBS is still considered one of the most lethal forms of child abuse. In the US approximately one-quarter of shaken babies die from their head injuries; abusive head injuries account for 90% of head injury deaths in children during the first year of life. Of the survivors, one-half will suffer severe and permanent neurological sequelae including seizures, developmental delays, learning disabilities, hydrocephalus (a build-up of cerebrospinal fluid in the brain), spasticity (stiffness) of the limbs, and blindness. Many will be permanently dependent upon others for life-long care. Even among those who seem to recover uneventfully, a significant number suffer subtle learning disorders and other cognitive difficulties (Dias, 2004). Shaken Baby Syndrome results in a child who is often completely dependent upon others for his or her care, and who will never be independent. In a 10 year retrospective chart review of 364 identified cases of Shaken Baby Syndrome in 11 Canadian pediatric care hospitals, King et. al., 2003, found that between 1988 and 1998 nearly 20% of the children died, 55% had lasting neurologic injury and 65% had visual impairment. King asserts that every year at least 40 cases of SBS occur in Canada and that this estimate represents "only the tip of the iceberg" because many cases are not detected. In the US initial hospital costs average between $18,000 and $75,000 in various studies; these estimates exclude doctors and X-ray fees and are probably underestimates. The total costs of care (including the costs of initial and ongoing medical care, various therapies, and long term care) in one documented case have exceeded $1 million. These costs don’t include the loss of societal productivity, the loss of tax revenue, and the costs of prosecuting and incarcerating a perpetrator. Two significant features of most studies of Shaken Baby Syndrome provide insight into a course for preventative action. First, parents are involved in the majority of cases. Second, the average age of the infants at the time of the abuse is between 5 and 9 months. Both the high percentage of parent perpetrators and the proximity of the injuries to the time of the child’s birth offer an opportunity to educate parents about Shaken Baby Syndrome with the aim of changing their behavior. The birth of the baby may present an ideal time to pass on this information for three reasons. First, the information is usually of direct interest to new parents – their attentions are often focused on their newborn baby and they are primed to receive information about their baby’s health and safety. Second, parents at this time are a captive audience – both mothers and fathers are usually present in the hospital and available to health care professionals at some point during the hospital stay. Third, the newborn period is a time when parents will soon be exposed to the frustrations of caring for a newborn infant.
The Dias Shaken Baby Syndrome Parent Education Program The major strength of the Dias SBS Parent Education Program lies in its simplicity and ease of implementation. The educational program is short and easy to
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introduce to parents – making it straightforward for very busy neonatal nurses and educators to put into practice. The program can be administered by almost anyone. It takes approximately 15 minutes of the parents’ time, and asks them to do three simple things: 1) read a short brochure in which the dangers of violent infant shaking are described and which provides alternative options to parents needing to vent their frustration and anger over persistent infant crying; 2) view a short video that covers the same subject matter; and 3) voluntarily sign a commitment statement affirming their receipt and understanding of the information. The program provides posters to place on the walls of the maternity wards so visitors can also be educated about violent infant shaking, and it makes available information cards about SBS from the Academy of Pediatrics that teach parents and caregivers how to handle prolonged infant crying. Another strength of the program is its focus on both parents: close attention needs to be paid to educating fathers and father figures, who in fact perpetrate 60 percent of shaken baby cases. Both parents are asked to view the information and sign the commitment statement. The program designers recommend that the educational material be provided to the parents after the child’s birth but before the baby’s discharge from hospital. They believe the timing of the instruction is an important factor in the program’s success: the physical presence of the newborn infant is a significant point of focus as parents are educated. The Upstate New York Shaken Baby Prevention Program has achieved a 42% reduction of Shaken Baby Syndrome incidence in New York State (Dias, 2004).
Initial Implementation Plan The program designers have identified three implementation phases: Phase I: The Planning Phase Phase II: The Implementation Phase Phase III: The Maintenance Phase Phase I: During the planning phase, a person who coordinates the program and carries it forward needs to be identified. All important constituents must be recognized and their input and support secured. These may include (among others) relevant government and political leaders; children services, and other public and private agencies; hospital administrators and/or medical directors; regional obstetricians and pediatricians; and most importantly, nurse managers at all hospitals that will ultimately provide the program. The program designers recommend that a nurse coordinator be hired to coordinate the program and interact with nurse managers and others at each hospital. The role of the nurse coordinator has been described as follows: 1) to educate the nurse managers and their staffs about the program, its importance, and its implementation;
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2) to serve as a regional resource for education, dissemination of materials and other supplies; 3) to act as a conduit for ongoing communication with the nurse managers at each hospital to troubleshoot problems as they arise, provide supplies as necessary, and maintain records of the number of parents reached; 4) to track the success of the program if desired, identifying cases of abusive head injury as they arise by interacting with pediatricians or other physicians at hospitals that provide emergency services to these infants, regional coroner’s offices, state child abuse agencies, and state child death review teams. The importance of this person as an experienced registered nurse has been highlighted in a number of publications (Dias, 2002, 2003, 2004). Since most of the people who will administer the program are nurses, the nurse-to-nurse interaction is extremely important as the nurse is a credible source of information. Phase I also involves identifying all hospitals that provide maternity care, as well as the name and phone number for the nurse manager for maternity or mother-child services. Each nurse manager should be contacted to introduce the concept and arrange a face-to-face meeting to give a brief presentation to the administrative staff. Once contact has been made and support enlisted from the nurse manager or designee, training of the maternity and neonatal nurses can begin. This can be done either by the nurse coordinator or nurse manager depending upon the individual circumstances. A standardized educational curriculum with slides and video is used in educating the nurses. During the training it is important to present the program in an enthusiastic manner and to emphasize the important role that they play in the success of the program and in saving children’s lives. Depending upon the circumstances, the ethics review committees need to be contacted at each hospital to ensure that any research and/or privacy issues are taken into account. Medical Records committee clearance may be necessary if the commitment statements will be entered into the patients’ medical record. The project will be reviewed by the University of Toronto’s Research Ethics Committee. Finally, materials must be obtained, translated into appropriate languages, and distributed to participating hospitals. Once materials are in place and nurses are trained, the program is ready to begin. The time required for Phase I is generally 3-6 months depending upon the size of the region, the number of hospitals, the speed with which support can be obtained, and the schedules for training nurses. Each hospital must find a reliable way to provide the videotape. Hospitals have either used a handcart with a videotelevision combination unit that can be wheeled into individual parent’s room, a centralized viewing area where several parents can view the video together, or educational channels where the video can be shown continuously or at predetermined times. Again, it is important to be flexible in finding a solution for each hospital.
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Phase II: Phase II starts when the participating hospitals begin to administer the education to parents and families – written material is handed out, the video is viewed, and commitment statements are collected. During this time, frequent contact with the hospital nurse managers helps to iron out various problems as they arise and to answer questions. Repeated nurse education may be required for those who did not initially receive it or for new hires. Reinforcing the central message to nurses and managers is important during this time so that they begin to incorporate the educational program into their daily routine and the program becomes second nature. New problems may arise as unforeseen circumstances change the nature or administration of the program. Responsibility may be handed off to another nurse or educator, or even other hospital personnel such as a social worker or lactation specialist; it is important that these people have the resources, education, and training to effectively administer and coordinate the program. Phase II ends when greater than 75% of the commitment statements are being signed by parents; by this time, the program has become incorporated into the culture of the maternity ward and becomes a matter of routine for the nurses. Phase II generally requires about 18-24 months. Phase III: The final phase begins when 75% of births are accompanied by returned commitment statements and 75% are signed by a father or father figure. By this time the program has become routine and the nurses generally are educating each other about its requirements. Ongoing input and communication by the nurse coordinator is still necessary for educating new hires; alleviating disruptions in program operation when there is a turn over in a nurse manager or other person responsible for coordinating the program (in some instances, this can result in the dissolution of the program within a hospital); and when other barriers or complications arise that make it difficult to administer the program. Nurses need to be reminded periodically about the whole purpose of the program and their tremendous importance to its success. This last point cannot be overemphasized. Continuous feedback to the nurses is extremely important: it is essential that they understand their efforts are in fact bearing fruit, that they are saving a baby’s life, and that they are participating in a program with demonstrated success. Ongoing short face-to-face meetings or periodic newsletters to the nurse managers and their staffs with updates will provide continuous positive reinforcement and continued success. Altogether it takes approximately 2 years for the program to be up and running smoothly with good active participation from all involved hospitals.
Research Design and Methods The nurse coordinator, once trained by the Dias team, will deliver a standardized in-service training program to maternity and neonatal intensive care nurses at all hospitals. The training program emphasizes the nature, purpose and importance of the program; provides information about the consequences of violent infant shaking and long
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term medical and developmental outcomes; reviews the results of the pilot programs; trains nurses how to approach parents with program information to educate them in a consistent manner, engender their support for the program, obtain their signatures on the consent sheet (CS), and answer any questions. It emphasizes the importance of seeking out both fathers and father figures for education; if that is not possible, having a mother share this information with her partner (if not present) and with other child care providers. Nurses on the maternity wards will administer the program to parents. Nurses will be requested to ask both parents to read the brochure and view the 11minute video Portrait of Promise. Nurses will be asked to provide the SBS program information separate from other discharge planning information and child safety information that might detract from the central message. They will be encouraged to discuss issues with parents and answer any questions. Hospitals will be asked to display educational posters (Never, Never, Never, Never Shake a Baby) in the halls of the maternity wards to provide additional public information for families and visitors. Both parents will also be asked to voluntarily sign a CS affirming their receipt of the information. All educational materials are being provided in community relevant languages. The hospital nurse managers will report monthly to the study coordinators: 1) the total number of deliveries, 2) the aggregate number of signed CS, and 3) the number of CS signed by mothers, fathers/father figures, or both parents. The proportion of returned CS will determine each hospital’s compliance with the program.
The Shaken Baby Syndrome Project All cases of children less than 36 months of age with an identified skull fracture, brain injury or intracranial hemorrhage, and/or retinal hemorrhage will be included in the study. Since it is difficult in many cases to assess the contributions of shaking and/or impact, all cases of substantiated abusive head injury regardless of reputed mechanism will be included. For each identified case, the study will track 1) the infant’s gender, ethnicity, date, hospital, and county of birth; 2) the date and county of the abuse and the child’s age and county of residence at the time of the abuse; 3) the type(s) of injuries, and 4) the perpetrator (when one is identified) and the relationship between the perpetrator and victim. The program’s educational materials pose no risk to participants beyond the potentially emotional content of the materials themselves. Participation by parents is strictly voluntary; they may refuse to view any or all of the educational materials and/or sign the CS. Since only the aggregate number of births and number of CS signed by each parent are shared with the investigators, no personally identifiable information will be disclosed.
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Strategic Grant Making Opportunities Provided by SBS Prevention Project The planned implementation of the SB Prevention Parent Education Program offers ONF an unprecedented opportunity to fulfill its mandate and elaborate its unique approach to strategic grant making characterized by employment of evidence, use of best practices, implementation evaluation, and project stewardship (See Volpe and Sikljovan (2004), The Best Practice Approach to Strategic Funding: SOYF/Ontario Implementation Evaluation). Although evaluation research has traditionally been seen as an external accountability tool by grant makers, it also has the potential to be used by grant makers such as ONF as a way of learning about their own effectiveness and ways to refine their strategic directions. The Ontario SBS prevention project initiative can follow the same implementation model employed in SOYF/Ontario. Once the already-established ONF SBS Parent Education Project Provincial Advisory Team reviews the implementation plan, the first step is to hire and train the project nurse coordinator. The ONF will also hire a research associate to work with the coordinator. Both of these individuals will work closely with the ONF prevention committee project stewards. Next, the implementation hospital maternity care nurse managers in the GTA will be brought together for an ONF/SBS information session. From this group letters of intent to implement the Dias SBS Prevention Parent Education Program will be solicited. Financial support for a half time nurse will be offered as an incentive to each hospital selected for the implementation. After review, selected candidates will be asked to submit full proposals to ONF. Three hospitals will be selected. The nurses in these settings will be trained in both the program and data gathering procedures. A year after the project begins the implementation will be advanced in Hamilton and North Bay-Sudbury. From each of these settings the project can migrate to additional hospitals, public health areas, and communities.
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