Transcript Patient and Family Centered Care

Family-Centered Care (FCC)
and Patient Safety
Thursday, June 21, 2007
12:00 – 1:00 p.m. EDT
Moderator:
Erin R. Stucky, MD, FAAP
Pediatric Hospitalist
Children’s Specialists of San Diego
Rady Children’s Hospital
San Diego, California
This activity was funded through an educational
grant from the Physicians’ Foundation for
Health Systems Excellence.
Disclosure of Financial Relationships and
Resolution of Conflicts of Interest for AAP CME Activities Grid
The AAP CME program aims to develop, maintain, and increase the competency, skills, and
professional performance of pediatric healthcare professionals by providing high quality,
relevant, accessible and cost-effective educational experiences. The AAP CME program
provides activities to meet the participants’ identified education needs and to support their
lifelong learning towards a goal of improving care for children and families (AAP CME
Program Mission Statement, August 2004).
The AAP recognizes that there are a variety of financial relationships between individuals and
commercial interests that require review to identify possible conflicts of interest in a CME
activity. The “AAP Policy on Disclosure of Financial Relationships and Resolution of Conflicts
of Interest for AAP CME Activities” is designed to ensure quality, objective, balanced, and
scientifically rigorous AAP CME activities by identifying and resolving all potential conflicts of
interest prior to the confirmation of service of those in a position to influence and/or control
CME content. The AAP has taken steps to resolve any potential conflicts of interest.
All AAP CME activities will strictly adhere to the 2004 Updated Accreditation Council for
Continuing Medical Education (ACCME) Standards for Commercial Support: Standards to
Ensure the Independence of CME Activities. In accordance with these Standards, the
following decisions will be made free of the control of a commercial interest: identification
of CME needs, determination of educational objectives, selection and presentation of
content, selection of all persons and organizations that will be in a position to control the
content, selection of educational methods, and evaluation of the CME activity.
The purpose of this policy is to ensure all potential conflicts of interest are identified and
mechanisms to resolve them prior to the CME activity are implemented in ways that are
consistent with the public good. The AAP is committed to providing learners with
commercially unbiased CME activities.
DISCLOSURES
Activity Title:
Activity Date:
Safer Health Care for Kids - Webinar
Family-Centered Care (FCC) and Patient Safety
June 21, 2007
DISCLOSURE OF FINANCIAL RELATIONSHIPS
All individuals in a position to influence and/or control the content of AAP
CME activities are required to disclose to the AAP and subsequently to
learners that the individual either has no relevant financial relationships or
any financial relationships with the manufacturer(s) of any commercial
product(s) and/or provider of commercial services discussed in CME
activities.
Name
Steven E. Krug,
MD, FAAP
Name of
Commercial
Interest(s)*
(*Entity
producing
health care
goods
or services)
Nature of
Relevant
Financial
Relationship(s)
(If yes, please list:
Research Grant,
Speaker’s Bureau,
Stock/Bonds
excluding mutual
funds, Consultant,
Other - identify)
CME Content Will
Include
Discussion/
Reference to
Commercial
Products/Services
Disclosure of Off-Label
(Unapproved)/Investigational Uses of Products
AAP CME faculty are required to disclose to the AAP
and to learners when they plan to discuss or
demonstrate pharmaceuticals and/or medical devices
that are not approved
No
No
No
No
DISCLOSURES
Name
John M. Neff, MD,
FAAP
Name of
Commercial
Interest(s)*
(*Entity
producing
health care
goods
or services)
Nature of
Relevant
Financial
Relationship(s)
(If yes, please list:
Research Grant,
Speaker’s Bureau,
Stock/Bonds
excluding mutual
funds, Consultant,
Other - identify)
CME Content Will
Include
Discussion/
Reference to
Commercial
Products/Services
Disclosure of Off-Label
(Unapproved)/Investigational Uses of Products
AAP CME faculty are required to disclose to the AAP
and to learners when they plan to discuss or
demonstrate pharmaceuticals and/or medical devices
that are not approved
No
Dr. Neff has
disclosed the
following financial
relationships,
unrelated to the
content of this CME
activity:
No
No
Consultant –
ACAMBIS, to serve
on DSMB’s on the
development of
smallpox vaccine
Consultant –
National Association
of Children’s
Hospitals and
Related Institutions
(NACHRI), to
consult on
development of
classification
research, e.g., how to
classify children’s
health issues in
administrative data
sets.
DISCLOSURES
SAFER HEALTH CARE FOR KIDS - PROJECT ADVISORY COMMITTEE AND STAFF
DISCLOSURE OF FINANCIAL RELATIONSHIPS
All individuals in a position to influence and/or control the content of AAP CME ac tivities are required to disclose to the AAP and
subsequently to learners that the individual either has no relevant financial relationships or any financial relationships with the
manufacturer(s) of any commercial product(s) and/or provider of commercial services discussed in CME activities.
Name
Name of
Commercial
Interest(s)*
(*Entity producing
health care goods
or services)
Nature of Relevant
Financial Relationship(s)
(If yes, please list:
Research Grant, Speaker’s
Bureau, Stock/Bonds
excluding mutual funds,
Consultant, Other - identify)
CME Content Will Include
Discussion/
Reference to Commercial
Products/Services
Disclosure of Off-Label
(Unapproved)/Investigational Uses
of Products
AAP CME faculty are required to
disclose to the AAP and to learners
when they plan to discuss or
demonstrate pharmaceuticals and/or
medical devices that are not approved
Karen Frush, MD, FAAP
(PAC Member)
No
No
No
No
Uma Kotagal, MD, MBBS,
MSc, FAAP (PAC Member)
No
No
No
No
Christopher Landrigan, MD,
MPH, FAAP (PAC Member)
No
No
No
No
Marlene R. Miller, MD, MSc,
FAAP (PAC Chair)
No
No
No
No
Paul Sharek, MD, MPH.
FAAP (PAC Member)
No
No
No
No
Erin Stucky, MD, FAAP (PAC
Member)
No
No
Not sure
No
Nancy Nelson (AAP Staff)
No
No
No
No
Melissa Singleton, MEd
(Project Manager – AAP
Consultant)
No
No
No
No
Junelle Speller (AAP Staff)
No
No
No
No
Linda Walsh, MAB (AAP
Staff)
No
No
No
No
DISCLOSURES
AAP COMMITTEE ON CONTINUING MEDICAL EDUCATION (COCME)
DISCLOSURE OF FINANCIAL RELATIONSHIPS
All individuals in a position to influence and/or control the content of AAP CME ac tivities are required to disclose to the AAP and
subsequently to learners that the individual either has no relevant financial relationships or any financial relationships with the
manufacturer(s) of any commercial product(s) and/or provider of commercial services discussed in CME activities.
Name
Name of
Commercial
Interest(s)*
(*Entity producing
health care goods
or services)
Nature of Relevant
Financial Relationship(s)
(If yes, please list:
Research Grant, Speaker’s
Bureau, Stock/Bonds
excluding mutual funds,
Consultant, Other - identify)
CME Content Will Include
Discussion/
Reference to Commercial
Products/Services
Disclosure of Off-Label
(Unapproved)/Investigational Uses
of Products
AAP CME faculty are required to
disclose to the AAP and to learners
when they plan to discuss or
demonstrate pharmaceuticals and/or
medical devices that are not approved
Ellen Buerk, MD, FAAP
No
No
No
No
Meg Fisher, MD, FAAP
No
No
No
No
Robert A. Wiebe, MD, FAAP
No
No
Not sure
No
Jack Dolcourt, MD, FAAP
No
No
No
No
Thomas W. Pendergrass, MD,
FAAP
No
No
No
No
Beverly P. Wood, MD, FAAP
No
No
No
No
CME CREDIT
The American Academy of Pediatrics (AAP) is
accredited by the Accreditation Council for
Continuing Medical Education to provide continuing
medical education for physicians.
The AAP designates this educational activity for a
maximum of 1.0 AMA PRA Category 1 Credit™.
Physicians should only claim credit commensurate
with the extent of their participation in the activity.
This activity is acceptable for up to 1.0 AAP credit.
This credit can be applied toward the AAP CME/CPD
Award available to Fellows and Candidate Fellows of
the American Academy of Pediatrics.
OTHER CREDIT
This webinar is approved by the National Association of Pediatric
Nurse Practitioners (NAPNAP) for 1.2 NAPNAP contact hours of
which 0.0 contain pharmacology (Rx) content. The AAP is
designated as Agency #17. Upon completion of the program,
each participant desiring NAPNAP contact hours should send a
completed certificate of attendance, along with the required
recording fee ($10 for NAPNAP members, $15 for
nonmembers), to the NAPNAP National Office at 20 Brace
Road, Suite 200, Cherry Hill, NJ 08034-2633.
The American Academy of Physician Assistants accepts AMA PRA
Category 1 Credit(s)TM from organizations accredited by the
ACCME .
LEARNING OBJECTIVES
Upon completion of this activity, you will be able to:
Describe the relationship between FCC and pediatric patient
safety.
Recognize the importance of providing FCC when treating
Children with Special Health Care Needs (CSHCN), as they
are a very diverse population with very individual safety
requirements.
Educate parents and caregivers about patient safety, and
engage them as true members of the health care team.
Steven E. Krug, MD, FAAP
Head, Division of Emergency Medicine, Children’s Memorial Hospital
Professor of Pediatrics, Northwesten University Feinberg School of
Medicine
Chicago, Illinois
John M. Neff, MD, FAAP
Professor of Pediatrics
Director, Center for Children with Special Health Care Needs
University of Washington/Children’s Hospital & Regional Medical Ctr.
Seattle, Washington
Patient Safety and Patient and
Family Centered Care of
Children in the Emergency
Department
American Academy of Pediatrics
Safer Health Care for Kids Webinar
June 21, 2007
Steven E. Krug, MD
Chair, AAP Committee on Pediatric Emergency Medicine
Professor of Pediatrics, Northwestern University Feinberg School of Medicine
Head, Division of Emergency Medicine, Children’s Memorial Hospital
Patient Safety in Healthcare
To Err is Human: Building a Safer Health
System (Institute of Medicine, 2000)
44,000 to 98,000 die each year in
US hospitals due to preventable
medical errors
An even greater number suffer
morbidity related to medical error
This is likely a underestimate of
the true occurrence of patient
safety concerns
National Quality Forum
Factors associated with increased risk for
medical error in health care
Multiple individuals involved in the care of a single
patient
Patients with high acuity illness or injury
Rapid health care decisions under severe time
constraints
High volume of patients and unpredictable flow
Barriers to communication with patients, families and
other healthcare professionals
Interactions with multiple types of diagnostic and/or
treatment technology
Source: Kizer KW. Patient safety: a call to action. A consensus statement from
the National Quality Forum. Medscape General Medicine 2001; 3:1-11.
Do These Factors Sound Familiar?
ACEP: Factors Placing Providers
and Patients at Risk in the ED
Overcrowding
Complexity of emergency patient and family needs
Shortage of healthcare workers
Uncontrollable nature of workflow
Declining health status of patient populations
Language barriers
Limited access to primary and specialty care providers
Lack of established relationships between ED staff
and patients
Source: American College of Emergency Physicians. Patient safety in the emergency
department environment report, 2001. Available at: http://www.acep.org.
Patient Safety Risks Unique to
Children in the ED
Lack of standardized dosing due to broad range
in size → weight-based dosing of medications
Increased risk for medication errors (e.g. 10-fold errors)
Inability of children to communicate complaints or
provide a medical history
Children unaccompanied by a parent
Poor localization of pain
Limited on-going exposure of many ED care
providers to ill and injured children
Failure/delay in recognizing critical illness or injury
Children with special health care needs
IOM: Attributes of High Quality Care
Source: Institute of Medicine. Crossing the quality chasm: a new health system
for the 21st century. Washington, DC: National Academies Press, 2001.
IOM: Patient and Family Centered
Care and Pediatric Emergency Care
Failure to incorporate PFCC and culturally
effective care into ED practice “can result in
multiple adverse consequences, including
difficulties with informed consent,
miscommunication, inadequate
understanding of diagnoses and treatment
by families, dissatisfaction with care,
preventable morbidity and mortality,
unnecessary child abuse evaluations, lower
quality care, clinician bias, and ethnic
disparities in prescriptions, analgesia, test
ordering and diagnostic evaluation”
Source: Institute of Medicine. Emergency care for children: growing pains,
Washington, DC: National Academies Press, 2006.
AHRQ: 20 Tips to Help Prevent
Medical Errors in Children
#1 - Be an active
member of
your child’s
health team
Source: Agency for Healthcare Research and Quality. 20 Tips to Help Prevent
Medical Errors in Children. Patient Fact Sheet. AHRQ Publication No. 02-P034,
2002. Rockville, MD. Available at: www.ahrq.gov/consumer/20tipkid.htm
Core Principles of Patient- and
Family-Centered Care (PFCC)
Treating patients and families with dignity and
respect
Communication and sharing of unbiased
information
Patient and family participation in
experiences that enhance control and
independence and build on their strengths
Collaboration in the delivery of care, policy
and program development, and in professional
education
Source: Institute for Family Centered Care. Core principles of family-centered
heath care. Advances in Family Centered Care 1998; 4:2-4.
PFCC: Conceptual Transitions
Family deficits  Family strengths
Control  Collaboration
Expert model  Partnerships
Information gate-keeping  Sharing
Negative support  Positive support
Rigidity  Flexibility
Patient/family dependence 
Empowerment
Source: Emergency Nurses Association. Assessment of family-centered care
in the emergency department. 2001. Available at: http://www.ena.org.
AAP & ACEP: PFCC in the ED
An innovative approach to health care that
recognizes the integral role of the family and is
grounded in a respectful and mutually beneficial
collaboration among the patient, family, and
health care professionals
PFCC embraces the concepts that
We are providing care for a person, not a condition
The patient is best understood in the context of his or
her family, culture, values and goals
Honoring the context will result in better health care,
safety, and patient satisfaction
To optimize child’s care, ED providers, parents and
the child are all on the same team
Source: AAP Committee on Pediatric Emergency Medicine & ACEP Pediatric Committee.
Patient and family centered care and the role of the emergency physician providing care to
a child in the emergency department. Pediatrics 2006; 118:2242-4.
ED Challenges to Providing PFCC
ED overcrowding and acuity
Lack of prior relationship with family
Previous patient/family experiences
Cultural and social variations among families
Language barriers and health literacy concerns
Patient arrival to ED without parent/family
Unaccompanied minor seeking care
Visits related to child abuse and neglect
Resuscitation and other urgent interventions
Unanticipated death of a child in the ED
Opportunities for PFCC in the ED
Family presence throughout ED care
During clinical decision-making and teaching
During invasive procedures
Disposition and discharge planning
Linkage to the medical home
Comfort care
Culturally effective care
Language translation support
Child life & social services
ED physical plant design
Patient and family input into ED policies
Family Presence During Invasive
Procedures and Resuscitation
Literature base consists primarily of
surveys of provider beliefs & practices
60 to 80% of families believe they want to be
present during ED care
Providers are somewhat less supportive
RNs generally more supportive than MDs
Senior MDs more supportive than trainees
Support decreases with increasing acuity
and/or intensity of the procedure
Source: Eppich WJ, Arnold LD. Family member presence in the pediatric
emergency department. Current Opinion in Pediatrics 2003; 15:294-8.
FP: What Do ED Providers Believe
A frequently offered concern by healthcare
providers is that family presence (FP) may
result in a delay or disruption of care
Reports of FP trials in EDs have not
demonstrated this to be a significant concern
Oddly enough, healthcare providers who
initially oppose FP commonly become
fierce advocates after trying it
Proponents for Family Presence
American Heart Association
American Academy of Pediatrics
Ambulatory Pediatric Association
Emergency Nurses Association*
Emergency Medical Services for Children1
Published guidelines/courses
EMSC FCC Guidelines (2000)
AHA CPR Guidelines (2000, 2005)
Pediatric Advanced Life Support (2002)
Advanced Pediatric Life Support (2004)
Emergency Nursing Pediatric Course (2004)
Trauma Nursing Core Course (2002)
(1) Emergency Medical Services for Children. Guidelines for
providing family-centered care. 2000.
FP: Reported Benefits for Family
Continued patient-family bonding and
connectedness
Facilitation of the grieving process
Sense of closure on a life shared together
Removal of doubt about what was happening to
the patient and the knowledge that everything
possible was being done
A spiritual experience
Feeling that they had been supportive and
helpful to the patient
Reduced fear and anxiety
Source: Guzzetta CE, Clark AP, Wright JL. Family presence in emergency medical
services for children. Clinical Pediatric Emergency Medicine 2006; 7:15-24.
FP: Benefits for Care Providers
Improved clinical-decision making
Improved clinical efficiency/ED patient through-put
Greater satisfaction with workplace environment
Improved patient satisfaction 
Lower burn-out/turnover
Improved understanding of social, ethnic and
cultural diversity
Improved awareness of children with special
healthcare needs
Reductions in medical error and liability risk
Are we more careful or deliberate with FP ?
Are we better informed abut our patients?
This may be especially valuable for special needs children
The Swiss Cheese Model
Model for accident causation
used in risk analysis
Views human systems as
successive layers of “cheese”
or defenses against error
Redundancy helps prevent errors
Holes represent defense weakness
Some hazards manage to find
the holes and bypass these
defenses, resulting in losses
Is PFCC another “slice of
cheese” or defense against
medical errors ?
Source: Reason JT. Human Error. Cambridge University Press, 1990
Culturally Effective Care
Delivery of care within the context of
appropriate physician knowledge,
understanding, and appreciation of all
cultural distinctions leading to optimal
health outcomes
Requires the acquisition of knowledge, development
of skills, and demonstration of behaviors and attitudes
that are appropriate to care for patients and families
from a wide variety of cultural attitudes
AKA “cultural competency” & “cultural sensitivity”
Source: AAP Committee on Pediatric Workforce. Ensuring culturally effective pediatric
care: implications for education and health policy. Pediatrics 2004; 114:1677-85.
ED Communication Concerns
Language translation
Interpretation
Cultural variations in
verbal and non-verbal
communication
Communication
anxiety
“Imbalance of power”
Health literacy
Performance of a Lifetime
Health Literacy: The Silent Epidemic
Definition: Health literacy is the degree to
which individuals have the capacity to
obtain, process, and understand basic
health information and services needed
to make appropriate health decisions
21% of the American Public cannot read the
headlines of a newspaper
48% cannot decipher messages with words
and numbers, i.e. instructions about a bus
route
Source: Institute of Medicine. Health literacy: a prescription to end confusion.
Washington, DC: National Academies Press, 2004
Health Literacy: A Barrier to PFCC
How many patients understand what we tell them
or give them to read?
About 52%, according to research
How do we know parents understand discharge
instructions
We often don’t
Parents/patients are quite ashamed of low literacy and
they are very good at hiding the problem
Asking “Do you understand what we’ve talked about?” won’t
get you very far
We need to hear it in their words
There is a big difference between asking “Do you understand”
and “Take a minute and tell me what we’ve talked about”
Comfort Care & ED Physical Plant
Future Directions in PFCC
Education
Post-graduate
Trainee level
Patients and
families
Advocacy and
leadership
Research !!
EBM Review of PFCC for Children
Cochrane review of literature assessing the
effects of PFCC models of care on the
outcomes of hospitalized children
Study methods – literature search for RCTs,
CCTs, etc comparing PFCC to other models
Study results – no studies met inclusion
criteria – no analysis could be performed
This review highlights the dearth of high
quality quantitative research on PFCC
Source: Pratt SL, Davis LM, Hunter J. Family centered care for children in the
Hospital. Cochrane Database of Systematic Reviews, 2007.
One Example: PFCC Bedside Rounds
Recommended in
AAP/IFCC policy
statement (2003)
Piloted on an inpatient
unit at CCHMC
RWJF Pursuing Perfection
Issues
Teaching
Time
Confidentiality
Source: Muething SE, Kotagal UR, et al. Family-centered bedside rounds: a new
approach to patient care and teaching. Pediatrics 2007; 119:829-32.
ED Patient Safety Resources
Frush KS, Krug SE, AAP COPEM: Patient safety in the
pediatric emergency care setting. (in press)
– Look for this policy statement in Pediatrics !
IOM Committee on the Future of Emergency Services in the
US Healthcare System: Emergency care for children: growing
pains. Washington, DC: National Academies Press, 2006.
Institute of Medicine. Crossing the quality chasm. A new
health system for the 21st century. Washington, DC: National
Academies Press, 2001.
Frush KS, Hohenhaus SM (eds). Patient safety in pediatric
emergency medicine. Clinical Pediatric Emergency Medicine
2007; 7:213-75.
American Academy of Pediatrics: www.aap.org
Emergency Nurses Association: www.ena.org
Institute for Healthcare Improvement: www.ihi.org
Joint Commission on Accreditation of Healthcare
Organizations: www.jointcommission.org
PFCC Resources
O’Malley P, AAP Committee on Pediatric Emergency Medicine,
ACEP Pediatric Committee. Patient and family centered care
and the role of the emergency physician providing care to a child
in the emergency department. Pediatrics 2006; 118:2242-4.
– Look for the companion Technical Report -- to be published soon !
AAP Committee on Hospital Care. Family-centered care and the
pediatrician’s role. Pediatrics 2003; 112:691-6.
Guzzetta CE, Clark AP, Wright JL. Family presence in
emergency medical services for children. Clinical Pediatric
Emergency Medicine 2006; 7:15-24.
Henderson DP, Knapp JF. Report of the national consensus
conference on family presence during pediatric cardiopulmonary
resuscitation and procedures. Journal of Emergency Nursing
2006; 32:23-9.
American Academy of Pediatrics: www.aap.org
Emergency Medical Services for Children: //bolivia.hrsa.gov/emsc/
Emergency Nurses Association: www.ena.org
Institute for Family-Centered Care: www.familycenteredcare.org
Family Centered Care
Children with Special Health
Care Needs and Patient
Safety
Safer Health Care for Kids
John Neff MD
Center for Children with Special Needs
Children’s Hospital and Regional Medical Center
Seattle, Washington
Objectives
Gain an Understanding of the:
Relationship between Families of Children with
Special Needs and their Children’s Safety
The Importance of Providing Family Centered Care
(FCC) for Children with Special Health Care Needs
(CSHCN)
The Unique Differences between Mother’s and
Father’s in Relation to Safety Issues
Understand the Specific Home and Hospital Safety
Issues of CSHCN
Relationship between Families of
Children with Special Needs
and their Children’s Safety
Families know their child best and their
child’s strengths and limitation
Families know the developmental and
physical challenges that their child has
better than any specific care giver
Relationship between Families of
Children with Special Needs
and their Children’s Safety
Practitioners know medical and therapeutic
needs and related safety issues that should
be shared with families as partners
Safety must be a shared effort by both
practitioners and families
The Importance of Providing
FCC for CSHCN
Families are the protectors of the child
Families have aspirations that their child will
reach his or her maximum level of achievement
and pleasure through play and interaction with
others
Families expect that their child will continue to
develop at his or her own pace
Differences between the Mother’s
and Father’s Role in FCC
(generalities)
Mothers tend to be the ones who interact most
with health professionals
Mothers are the organizers of the health plan
Mothers tend to be the protectors
Fathers are expected to be the providers
Fathers have a special interest in play activities
as the child develops; they encourage risk taking
Fathers take special pride in child’s development
Fathers sometimes feel or are left out of FCC
Important to Involve and
Empower both Parents Equally
in Safety Issues for the Child
with Special Health Care Needs
Families should take the Lead
on Safety Issues with
Appropriate Professional
Guidance
Practitioners Role is to Coordinate
Family Centered Care
Understand Specific Safety
Concerns and Guidelines for the
Child
Obtain Input from Child’s Specialty
Providers
Family Centered Care is more
Difficult to Accomplish
but just as
Important for non-English
Speaking Families
Definition of Children with
Special Health Care Needs
Maternal Child Health Bureau 1990
Definition of Children
with Special Health Care Needs (CSHCN)
Those children who have or are at an
increased risk for a chronic
physical, developmental, behavioral
or emotional condition and who require
health and related services of a type
or amount beyond that required by
children generally
General Consideration
of Safety Issues
Physical Conditions – Issues: mobility, weaknesses
and strengths, challenges around specific conditions
Developmental Conditions – Issues: developmental
stages and cognitive abilities
Behavioral / Emotional Conditions – Issues: fears and
anxieties, judgmental abilities and emotional stability
Technology Dependence – Issues: mobility devices,
I.V. lines, respiratory support , medications, nutritional
formulas
Combination of Conditions – Issues: all of the above
as appropriate
Medical Care
Assumptions
Parents and their primary care providers in
the medical home will know the child
better than the hospital team
Primary care providers can help by
empowering both parents to be advocates
for their child and by informing the hospital
team that the families are knowledgeable
about their child’s needs
Hospital / Medical
Preparation
Parents can work out with their medical home
providers to develop a care note book with
specific items that will make a hospital
experience safer (preferably electronic format)
Parents can bring this care note book to the
hospital and be sure that the admitting
physicians see it, are familiar with the child and
incorporate the material into hospital records
and orders.
Specific Issues
Hospital (Home) Medical Care
Medications, dosages and routes of admin.
Formulas and Nutrition
Intravenous lines
Equipment use
Infections
Skin care and hygienic practices
Special emotional, developmental and
physical needs
Pain and sedation
Contents of Care Note Book
List of medications, dosages, side effects
and reasons for use
Equipment information and how it has
been adapted for the child
Specifics recommendations about child’s
vulnerabilities and needs (such as skin,
GU, bones, emotional, cognitive, allergies)
Nutritional requirements
Hospital / Medical Team
Consider the family to be an integral
member of the medical team
Incorporate their concerns and specific
recommendation on how best to provide
care
Interpreters should be available for
families whose primary language is not
English,
Hospital / Medical Team
Parents can serve as helpful monitors on the care
the child is receiving in the hospital
Observe hand washing and other measures to
prevent nosocomial infection
Check medication dosages and ask questions
when treatment measures are not clear to them
Speak up about concerns
Inform staff about special vulnerabilities and
pleasures of the child
Nutritional and Oral Concerns
Use appropriate foods and position for
CSHCN
Know about formula contents
CSHCN should generally eat at a table
and not be walking around when eating
Be aware of common small items that
should be kept away from child
Equipment and Electrical Safety
Be aware of safety needs of the
equipment for the CSHCN
Special attention to electrical overload,
fires and other electrical accidents
Follow carefully recommendations in
owner’s manuals
Environment Home
Be sure that the child is appropriately supervised
Always be sure that water temperature is appropriate for
child
Be sure that your local Fire Department knows about the
special circumstances of your CSHCN
Have available a special bag with medicines
Develop an alarm system that the CSHCN can use
Keep material near child to assist in escape
Positive vs Negative Reinforcement
When we emphasize a safe environment it
is often a list of negatives
Develop positive ways that we can
encourage safe behavior for CSHCN that
encourages development of skills,
teamwork, and appropriate and risks
Follow up with Family
Observations
Successes
New Concerns
Suggestions
(Use Check List for Guidance)
Summary
Allow families to take the lead on safety planning
for their child with as much attention to father’s
issues as well as the mother's
Provide professional guidance and updated
safety information concerning the child’s specific
conditions
Include safety planning as part of the care
coordination process
Encourage the do’s as well as the don’ts when
providing information and advice
Resources
Safety Tips for Children with Special Needs:
www.cshcn.org/resources/infoanded.cfm#si
Emergency Preparedness for Special NeedsAmerican Red Cross:
www.prepare.org/disabilities/disabilities.htm
Wheelchair Safety in Vehicles -University of Michigan
Transportation Research Institute: www.travelsafer.org
Adapted Bicycle Products for Special Needs:
www.rileyhospital.org/document.jsp?locid=1416
Playground Safety for Children with Special Needs:
www.cshcn.org/forms/PlaygroundSafety_English.pdf
Now What?!?
Some take-away points from the Webinar:
Family-Centered Care (FCC) and
Patient Safety
June 21, 2007
TAKE-AWAY POINTS
Steven E. Krug, MD, FAAP
PFCC has become recognized as the standard of
practice resulting in high quality and safe care
– Requires a paradigm shift from traditional care models
Families should be present during the entire course
of ED care, including procedures and teaching
– This practice will benefit patients, families and providers
Culturally effective care is an essential component
of PFCC in all settings
– Timely access to interpreter services is required
Health literacy represents a barrier to effective
communication, patient safety and PFCC
– We need to assure that patient families really understand
TAKE-AWAY POINTS
John M. Neff, MD, FAAP
Involve families in hospital safety issues
Provide families with information and
empower them to be part of the team
Encourage families to develop and
maintain a transportable care note book
that has child’s current health plan
Make a special effort to include non
English speaking families in FCC
Care Note Book
Visit:
http://www.cshcn.org/resources/c
arecoordination.cfm