PREVENTING
INFLICTED INFANT HEAD TRAUMA
The ONF SBS Best Practice Implementation Program
Richard Volpe, PhD
Institute of Child Study
Life Span Adaptation Projects
University of Toronto
45 Walmer Road, Toronto, Ontario, Canada
Email: [email protected]
http://www.oise.utoronto.ca/research/ONF-SBSPrevention/
Inflicted/Abusive Infant Head Trauma
formerly known as shaken baby syndrome
•
SBS thought to be a unique cluster of intra head and eye
injuries, brain hemorrhages and edema, retinal
hemorrhages, rib and long bone fractures
•
Injuries caused by violent shaking and impact
Victim – typically under 6 months, male, and alone with
perpetrator
Perpetrator – typically father, stepfather, boyfriend,
caregiver
Inflicted Infant Head Trauma
• A specific form of child abuse—most violent
• Leading cause of death (1/3) of abused children
• Leading cause of long term disability (1/2)
• Canadian chart review of 364 cases (King, 2003)
– 20% died
– 65% lasting head injury
– 65% visual impairment
– OHIP cost of survivors life time 1 million dollars
– Estimate: 40-50 cases per 100,000 live births
Shaking Scenario
retinal hemorrhages
We Know Enough:
• Risk factors can substitute for understanding causes
• Risk factors also point to protective factors
• More than one risk factor usually needed to bring about
an adverse outcome
• More than one positive factor usually needed to
produce a positive outcome
Associations:
• Incidence-universal
• Prevalence-likely economic gradient
• Crying – Debatable hypothesis of peak crying and
incidence up to 38 months
• Shaking – questionable that shaking alone could cause
pattern of injuries
SBS pattern not sufficiently supported by evidence to
provide basis for causation, diagnosis, and treatment
SBS Parent Education Programs
Dias Model
•
•
•
•
•
5 minute verbal message
Portrait of Promise (10minute DVD)
Educational brochure
Commitment Statement
Content: 90% about the
dangers of shaking; 10%
ways to cope with /
manage infant crying
Period of PURPLE Crying
•
•
•
•
5 minute verbal message
Period of PURPLE Crying
(10-minute DVD – left with
family)
Educational booklet (11
pages)
Content: 50% about the
dangers of shaking: 50%
what is normal infant
crying & how to manage
Upstate New York
Reduced incidence of abuse
Incidence of abusive head injuries after 6 years:
• Decreased by 47% (from 41.5 cases per 100,000 live births
to 22.5)
• Similar changes in incidence were not evident in
comparison regions that did not have an SBS education
program. (Dias, et. al. 2005)
• Conclusion: Educating parents of all newborns can
significantly reduce incidence of inflicted infant head
injury.
North American SBS Legislation
Wisconsin and Nebraska join New York, Missouri, Illinois,
Minnesota, and Pennsylvania in implementing the
hospital based SBS prevention program for new parents
developed at Children's Hospital of Buffalo.
Similar legislation is pending in Massachusetts, Rhode
Island, New Jersey and Iowa.
California, Texas, Florida, Indiana, Virginia, Tennessee, and
Washington also have statutory requirements that
parents receive information about SBS.
ONTARIO NEUROTRAUMA FOUNDATION
SBS IMPLEMENTATION PROJECT
Goals :
• Educate all parents of newborns (Timing)
• Confirm receipt of information
• Track success of program
• Monitor SBS cases in region to determine reduction of
incidence
Procedures :
• Parents (both) given informed consent and asked for
general information
• Parents receive SBS leaflet
• Parents shown short video
• Additional information (Ontario Infant Comforting Card)
provided apart from other newborn materials
• Parents asked to sign a commitment form that is
witnessed by nurse
• Parents agree to a 5-7 month follow-up telephone call
Implementation Evaluation :
• Multiple case study design
• Focus on both process and outcome
ONF Shaken Baby Syndrome Prevention Program (phase I)
Ontario
Best Start Resource Centre
Sudbury
Sudbury General Hospital
Sudbury Public Health
Midwives of Sudbury
North Bay
North Bay General Hospital
North Bay Public Health
CCPIP
Midwives of North Bay
Kingston
Mississauga
Better Beginnings
Public Health
Credit Valley Hospital
Hamilton
McMaster University
Public Health Services –
Healthy Babies
Oshawa
Lakeridge Health Centre
Toronto
University of Toronto
Life Span Adaptation Projects
Institute of Child Study, OISE/UT
ONF SBS Implementation :
• All sites began full implementation of
education program at launch (use of
educational materials: video, crying card,
posters).
• Post-launch, sites have achieved full
implementation (education, consent
forms, data tracking).
• Items in brackets are fidelity features of
the best practice.
SBS comforting card :
• A collaborative project of: the Ontario Neurotrauma
Foundation SBS Prevention Program, Toronto Public Health,
and the Best Start Resource Centre, 2008.
• Content developed by the ONF SBS Prevention Program,
handouts provide information about infant crying and
comforting techniques.
• Downloadable in 20 languages. Includes a text box to insert
local contact information
• Available in English, French, Arabic, Bengali, Chinese, Farsi,
Greek, Hindi, Italian, Korean, Ojibway, Polish, Portuguese,
Punjabi, Russian, Somali, Spanish, Tagalog, Tamil and Urdu
by download only
Hospital-based participation in
education program :
• To date >7100 live births during the study period:
– 87% of the families have been offered SBS education
– 73% resulted in a signed consent form
• Of the 6200 families offered SBS education
– 84% mothers, 69% fathers/figures signed
• Of the 5200 signed a consent forms
– 100% mothers, 82% fathers/figures signed
Community-based participation in
education program :
• To date >1000 live births during the study period.
– Estimate that approximately 60% of the families
have been offered SBS education
– 50% resulted in a signed consent form.
• Of the families offered SBS education
– 68% mothers, 27% fathers/figures signed
• Of the signed a consent forms
– 100% mothers, 40% fathers/figures signed
SBS awareness & attitudes :
• Hospital-based sites
– 96% found the SBS information to be helpful.
– 97% aware that shaking a baby can be dangerous.
– 99% recommend information for all new parents.
– 67% willing to participate in the follow-up.
• Community-based sites
– 96% found the SBS information to be helpful.
– 94.5% aware that shaking a baby can be dangerous.
– 99% recommend information for all new parents.
– 90% willing to participate in the follow-up.
Dissemination of SBS Information
to Parents :
Mother’s
Signature?
(% yeses)
Father’s
Signature?
(% yeses)
If father is living
with baby, did
he receive SBS
info in hospital?
(% yeses)
Total
Average
85.34%
(n= 6485)
72.26%
(n=5136)
81.05%
(n=946)
78.42%
(n=126)
65.39%
Hospital
Average
88.34%
(n=5839)
82.87%
(n=4846)
82.54%
(n=871)
79.28%
(n=75)
60.18%
Community
Average
81.05%
(n=646)
58.12%
(n=290)
78.09%
(n=75)
76.71%
(n=51)
75.81%
If not, did
mother share
SBS info with
father?
(% yeses)
Share SBS
info with
other
caregivers?
(% yeses)
SBS Knowledge & Program Options:
First time
heard about
SBS?
Information
helpful?
(% yeses)
Recommend
Info?
(% yeses)
Follow-up?
(% yeses)
Total Average
(n=6485)
6.68%
94.61%
99.11%
72.83%
Hospital
Average
(n=5839)
6.68%
95.71%
99.55%
63.84%
Community
Average
(n=646)
7.21%
93.14%
98.52%
84.81%
Impact of 5-7 month follow-up :
Remember SBS
info?
(% yeses)
Remember
health-care
provider
discussing SBS?
(% yeses)
Remember
receiving written
SBS materials?
(% yeses)
Remember SBS
video?
(% yeses)
Remember SBS
posters?
(% yeses)
Total Average
(n=1083)
92.79%
85.00%
85.77%
81.09%
60.78%
Hospital
Average
(n=959)
97.57%
85.04%
85.27%
71.63%
59.13%
Community
Average
(n=126)
83.23%
84.93%
86.77%
100%
64.08%
SOCIAL NETWORK ANALYSIS
PREVENTION:
Safety and Security
Creating a climate of safety
through community
partnerships that contribute to
personal security.
Whole network :
Network without U of T :
Rural site: Centre of high intensity
Large urban site :
HIGH INTENSITY
• The four Es
(Education, Enactment, Engineering, Economics)
• Determined preventability
• Combo-collaborative programs
• Scale-simplicity and excellence in outcome not
necessarily in execution
Centre of High Intensity :
Combinations of specific programs that lead to holistic
development and community building in multidimensional
forms of public-private partnership
Aim: Promote social cohesion through active citizenship
Activities: Implementing best practices to create partnerships
that help overcome fragmentation of prevention practices,
program, and policy initiatives
Distributed Resilience :
SBS as a system integrator and
boundary bridge
Possible New Sites
•
Chatham-Kent Health Alliance (CKHA)
•
Chatham-Kent Public Health Unit HaldimanNorfolk Health Unit
•
Hamilton Health Sciences (HHS)
•
Huron County Health Unit
•
Middlesex London Health Unit (MLHU)
•
Peel Children's Aid
•
Sunnybrook Health Sciences Centre
•
Thunder Bay Regional Health Sciences Centre
Ontario Neurotrauma Foundation Inflicted Infant Head Trauma Prevention
(Formerly SBS Prevention) Phase I and Phase II Sites
Phase II
Thunder Bay Regional Health
Sciences Centre
Phase II
William Osler Health Network
(Brampton Civic Hospital & Etobicoke General Hospital)
Phase II
Peel Region Children’s
Aid
Phase I
Sudbury
Phase II
Middlesex-London Health
Unit
Phase I
North Bay
Phase II
Huron County Health Unit
Phase II
Halidman Norfolk Health Unit
Phase I
Kingston
Phase II
Chatham-Kent Public Health Unit &
Chatham-Kent Health Alliance
Phase I
Hamilton
Phase I
Mississauga
Phase II
Hamilton Health Sciences
Toronto:
University of Toronto
Toronto Public Health
Ontario:
Health Nexus/Nexus Santé
Phase I
Oshawa
Phase II
Sunnybrook Health Sciences
Centre
Goal : Sustainability & Scale
Sustainability :
∗ Sustainability - continuing a prevention program
after a demonstration or initial funding has ended
- Sustainability is about change
- Program a consequence of system
changes that continue
-Sustaining not conserving
-Sustained program not likely intact
Sustainability features :
•
Preplanning
•
Relationship building and maintaining
•
Diverse funding base
•
Be part of system change
•
Evaluation
•
Stakeholder ownership-participation and collaboration
•
Flexibility
Going to Scale :
Repeating the Model
• Think system change
• Know and maintain fidelity features
• Success - a learning process (expansion not
explosion)
• Networks and linkages (politics)
• Socialization and training
• Program refreshment (evaluation)
• Institutionalization
Refresher strategy :
• RECIPROCAL MENTORSHIP
• COMMUNITY OF PRACTICE BUILDING
– Develop an active core group of participants
– Provide opportunities for leadership and ownership
– Build relationships based on trust to facilitate problem
and solution sharing (create social connections/
networks)
– Create forums for thinking together as well as systems
for sharing information.
Community of Practice :
Definition:
• A self-organized, deliberate collaboration of people
who share common practices, interests or aims and
want to advance their knowledge.
Thank you!
We gratefully acknowledge research support
from
The Ontario Neurotrauma Foundation