Babies Reaching Improved
Development and Growth in their
EnvironmentHome Follow-Up Program
Objectives
Explore family preparedness for discharge from the NICU.
Describe barriers to care for families discharged from the NICU.
Define the mission and role of the BRIDGE program in daily practice.
Define the target patient population for the BRIDGE program.
Describe the benefits of a NICU follow-up program.
Benefits of Early Discharge
Decreasing the period of separation from the parents may subsequently lessen the adverse effects on parenting.
Decreased risk of hospital-acquired morbidity Financial benefits to the hospital
Risk of Early Discharge
Infants may be placed at risk for increased mortality and morbidity related to discharge before physiologic stability is established.
Staff Confidence
Study by Smith et al. (2009) Beth Israel Deaconess Medical Center 800 NICU admissions per year 40 bed unit Nursing staff did not feel as confident in the
families abilities as the families did with themselves.
Are families prepared for discharge?
Full-term infant studies indicate that despite discharge teaching, some parents do not feel adequately prepared.
Among preterm infants, the data is limited.
Are families prepared for discharge?
Study by Hamelin, Saydak, & Bramadat (1997) Parental questions go unasked because of the
excitement of discharge. Parents felt questions were not important enough
to ask the medical staff. Mothers experienced a renewed crisis when their
infants came home.
Are parents prepared for discharge?
Study by Conner and Nelson (1999) Majority of parents felt prepared Parents expressed need for comprehensive
follow-up services Parents expressed vulnerability post-discharge
because of no home visit follow-ups
NICU Parents Worries at Discharge
1. My baby is so fragile! He will be going home on medical equipment and medicines and will need specialist visits and more. Is my baby really ready to come home?
2. Am I capable of taking care of my baby on my own?
NICU Parents Worries at Discharge
3.How do I get through the first night/week without you there to help?
4.What if I forget the steps for CPR?
5.What local resources can assist me after discharge?
Perceptions of Vulnerability
High parental perception of child vulnerability is associated with high health-care utilization along with an increased risk of behavior problems and altered parent-child interaction.
A recent study of preterm infants suggested that higher perception of child vulnerability is correlated with worse developmental outcome at 1 year adjusted age.
Population at highest risk for: Readmission & Adverse Outcomes
AAP Categories of High Risk
1. The preterm infant
2. The infant who requires technological support
3. The infant primarily at risk because of family issues
4. The infant whose irreversible condition will result in an early death.
Health Risks for Premature Infants
Sudden Infant Death Syndrome (SIDS) Vision Problems Hearing Problems Inguinal Hernias GERD Anemia Rickets
Health Risks for Premature Infants
Failure to Thrive (FTT) Chronic Lung Disease (CLD) Asthma Respiratory Synctial Virus (RSV) Neurobehavioral delays Developmental delays
Health Risks for Congenital Heart Disease
Delays in growth Possible neurologic abnormalities Feeding difficulties Difficulty sleeping More severe symptoms from common
pediatric problems (ie. RSV)
SCC Demographics 2000
WhiteHispanicAsian/PIAfrican American
44%
24%
26%
3%
Santa Clara County
SCC Demographics 2010
WhiteHispanicAsian/PIAfrican American
35%
27%
32%
2%
Santa Clara County
Projected SCC Demographics 2050
WhiteHispanicAsian/PIAfrican American
2%
29% 28%
36%
Santa Clara County
Latino Immigrants
Latinos comprise the fastest growing ethnic group in the United States, accounting for 15% of the current population.
Limited english proficiency (LEP) Uninsured & earn incomes below federal
poverty level
Latino Immigrants
Birth rate is highest among all ethnicities, nearly 1/4 of Latino women receive limited or no prenatal care.
Birth rate by race/ethnicity
Birth Rate per 1000 people
Santa Clara County
13.0
Latina / Hispanic
18.0
White
8.5
African American
10.2
Race / Ethnicity
Asian / Pacific Islander
5.7
SCVMC NICU Demographics 2011
Admissions
Total deliveries: 4227Total Admissions: 424Inborn admissions:358Outside Admits: 66Acute Transports: 41
SCVMC NICU Demographics 2011
Infant Population
Latino Families with LEP
Study by Miquel-Verges, Donohue, & Boss (2011)
Explored parents’ experience of the transition from NICUs to community pediatric care.
Participants 25 beds, no subspecialty service 45 beds, regional referral center
Latino Families with LEP
Design Initial parent interview 48hrs prior to NICU
discharge 2nd interview 1 month after discharge
Latino Families with LEP
Results 47% of mothers reported receiving less than 1hr
of teaching 86% responded that they were “satisfied” or “very
satisfied” with d/c teaching 73% reported understanding “most of what
happened in the NICU” 27% reported understanding “some of what
happened”
Latino Families with LEP
Results 47% felt “very prepared” to take their infant home 49% felt “somewhat prepared” 53% worried about their infant’s future medical
status 81% worried about future
developmental problems
Medical problems and healthcare utilization after D/C
62% of infants had been seen by the PCP once or twice
27% reported 3 or 4 visits 9% reported >4 visits 3% could not remember 1/3 went to the ED, but only 6%
required hospitalization 24% had a nurse visit their home
Medical problems and healthcare utilization after D/C
Although most mothers received information about community resources prior to d/c, the majority could only name WIC.
55% were eligible for early developmental intervention programs, only 32% of mothers were aware of the program.
Latino Families with LEP
As many as 1/3 of Latino children experience difficulties getting specialized medical care.
Barriers to adequate primary care likely also impact subspecialty follow-up.
Misuse of Emergency Room.
Latino Families with LEP
NICUs must support immigrant families with LEP during their infants hospitalization, throughout the discharge process, and the transition to community pediatric care.
Pediatric care post discharge
Well Child Checks
AAP recommends a minimum of 6 WCC visits in the first year.
Term newborns without morbidities can expect to have an average of 12 visits the first year.
Pediatric care post discharge
Study by Wade et al. (2008) Cohort 23-32 weeks gestation Infants had a mean of 20 clinic visits per year The top 10th percentile included infants who had
more than 33 visits The extra visits per year for preterm infants were
attributed to non-well pediatric and specialty care.
Conclusions
Families of infants who have more than 30 visits per year to a medical center would benefit from a coordinated schedule of visits and a clear mechanism of communication between and among physicians and the family.
For some infants, home visits and follow-up phone communication may serve to support and educate parents in the care of their infants while also reducing frequency of visits and parental anxiety.
Babies Reaching Improved
Development and Growth in their
EnvironmentHome Follow-Up Program
Launched April 4, 2011
Mission Statement
To provide safe, cost effective, quality preventative home care to medically fragile NICU graduates while bridging the gap between the NICU, the patient’s home, and ambulatory care pediatrics.
Family
BRIDGE
NICU
Pediatrics
PHNs
Soc Serv
Specialty
HRIF
Goals
1.To facilitate the transition from the NICU to the home environment for medically fragile infants with complex medical issues.
2.Reduce parental anxiety during the transition home.
3.Minimize unnecessary re-hospitalizations, urgent care and emergency room visits.
Comprehensive Perinatal Services Program (CPSP)
Women with Medi-Cal receive comprehensive services including prenatal care, health education, nutrition services, and psychosocial support for up to 60 days after delivery of their infants.
Some NICU patients are discharged home after 60 days of life, thus making them ineligible for a CPSP visit.
Challenges Public Health Department has experienced significant
budget cuts.
NICU graduates are missing critical follow-up appointments.
NICU graduates are being seen in urgent care and the emergency room for conditions that could be treated in the home by a Nurse Practitioner.
A great communication gap exists between outpatient and inpatient hospital systems.
Federally Qualified Health Center (FQHC) Visits
Reimbursed by State and Federal Government at $350 per home visit.
No limit on the number of FQHC home visits.
BRIDGE qualifies as FQHC visits.
Eligibility Criteria for BRIDGE
Premature infants < 32 weeks gestation Birth Weight < 1500 grams at birth Term infants diagnosed with Hypoxic
Ischemic Encephalopathy (HIE) Infants with Congenital Heart Disease (CHD) Complex surgical infants
Expanded Eligibility Criteria
Premature infants < 36 weeks gestation NICU stay > 7 days Multiple gestation Chromosomal or congenital anomalies Infants of teen parents Infants going into foster care Drug exposed infants
Before the Visit Attend weekly clinical and multi-disciplinary team
rounds. Compile comprehensive medical history: interim
summaries, discharge summaries, lab results, diagnostic imaging.
Meet guardian before discharge. Acquire contact information. Schedule visit: Goal is to have first visit 1-2
weeks post-discharge.
During the Visit Medical History since NICU discharge Review of Systems Comprehensive Physical Exam Anticipatory Guidance Health Care Maintenance
Family Centered Care
Each family must be treated individually, with care customized to their unique situation.
After the Visit
Charting
Electronic Medical Record Generate Detailed Medical Note Note shared with multi-disciplinary team
Roles & Inter-Relationships
Maintain and sustain open communication between all of the healthcare providers in the patients medical home.
Charge Slips
Generate charge slip for every visit. Billing based on ICD-9 codes Charges based on problems addressed
during the visit.
Common Problems
Issues Addressed: Medications Immunizations Feeding Medical Equipment Car Seat Safety Patient Appointments Need for educational reinforcement
Empowerment
Adequate parental education can reduce the risk of readmission by ensuring that: Parents seek medical attention appropriately. Parents administer medications and other
therapies correctly. Parents show confidence in the home
management of non-acute medical problems.
Parent Evaluations
“What a wonderful service to families-very valuable. I’m an ex-NICU nurse & the visit was so helpful & reassuring even though I’ve had experience with medically fragile babies.”
“I have a lot of weight lifted off my shoulders now.”
“I’m a first-time mom & I found this very helpful, all of my questions were answered.”
Future Plans
Expansion to MICC in July 2013 Teen mothers Mothers with limited prenatal care prior to delivery Families with social issues Patients with chromosomal anomalies Patients with anatomical anomalies
Publish data on: “Effectiveness of the NICU BRIDGE Home Follow-up Program”
El Fin!
An infant’s transition from the NICU to home is poorly understood. However, it represents a critical step in infant growth and development.
ReferencesAmerican Academy of Pediatrics, Committee on Fetus and Number. (1998). AAP position statement. Hospital
discharge of high-risk neonate-Proposed guidelines. Pediatrics, 102: 411-417.
Conner, JM, and Nelson, EC. (1999). Neonatal intensive care: Satisfaction measured from a parent’s perspective. Pediatrics, 103(supplement E): 336-349.
Discenza, D. (2009). NICU parents’ top ten worries at discharge. Neonatal Network, 28: 202-203.
Hamelin, K, Saydak, MI, and Bramadat, IA. (1997). Interviewing mothers of high-risk infants. What are their support needs? The Canadian Nurse, 93:35-38.
Miquel-Verges, F, Donohue, PK, and Boss, RD. (2010). Discharge of infants from NICU to latino families with limited english proficiency. Journal of Immigrant Minority Health, 13:309-314.
Santa Clara County Public Health. Quick Facts: Status of Latino/Hispanic Health, 2012. Maternal, Infant, Child Health. Data acquired online Oct 12, 2012 at http://www.sccgov.org/sites/sccphd/en-us/Partners/Data/Documents/Latino%20Health%202012/LHA_MaternalInfantChildHealth_oct2012.pdf
ReferencesSanta Clara County Public Health. Quick Facts: Status of Latino/Hispanic Health, 2012. Population growth over time
and projected population size by race/ethnicity. Data acquired online Oct 12, 2012 at http://www.sccgov.org/sites/sccphd/en-us/Partners/Data/Documents/Latino%20Health%202012/LHA_Demographics_oct2012.pdf
Smith, VC, Young, S, Pursley, DM, McCormick, MC, and Zupancic, JAF. (2009). Are families prepared for discharge from the NICU? Journal of Perinatology, 29: 623-629.
Sneath, N. (2009). Discharge teaching in the NICU: Are the parents prepared? An integrative review of parents’ perceptions. Neonatal Network, 28: 237-246.
Wade, KC, Lorch, SA, Bakewell-Sachs, S, Medoff-Cooper, B, Silber, JH, and Escobar, GJ. (2008). Pediatric care for preterm infants after NICU discharge: High number of office visits and prescription medications. Journal of Perinatology, 28: 696-701.
Questions
Comments
Foster Families
Foster Care
Shortage of qualified foster families Increases in employment for women Increases in the # of single-parent families Complexity of problems experienced by foster
children Increase in the number of kinship caregivers.
The effect of shortages of good foster families
Children generally have: An increased incidence of chronic medical
conditions Lack of general health care Lack of developmental and mental health
monitoring As many as 75% of young children in foster care
need further developmental evaluation or have a developmental delay
ReferencesClyman, R, Harden, B, and Little, C. (2002). Assessment, intervention and research with infants in out-of home
placement. Infant Mental Health Journal, 23: 435-453.
Edelstein, S, Burge, D, and Waterman, J. (2001). Helping foster parents cope with separation, loss, and grief. Child Welfare, 80: 5-25.
Gleeson, JP, O’Donnell, J, and Bonecutter, FJ. (1997). Understanding the complexity of practice in kinship foste care. Child Welfare, 76: 801-826.
Hegar, RL, and Scannapicco, M. (1999). Kinship foster care: Policy, practice, and research. University of Nebraska Press: Lincoln, Nebraska.
Marcellus, L. (2004). Foster families who care for infants with perinatal drug exposure: Support during the transition from NICU to home.
Mauro, L. (1999). Child placement: Policies and issues. In Young Children and Foster Care: A Guide for Professionals. Silver, J, Amster, B, and Haecker, T, eds. Brooks: New York, 261-278.
U.S. Department of Health and Human Services, Administration for Children and Families, 2000. The AFCARS Report. Administration on Children, Youth and Families Children’s Bureau. Referenced in article by Marcellus, L. (2004).
Foster Family Panel
Alan Graham Sandi Orlando Jeni Strouss Judi VanElderen
Questions
Comments
Prompted Questions What made you decide to become a foster parent? What are some of the challenges of being a foster parent to a
medically fragile child? How easy or difficult is it to navigate the healthcare system? If your child sees multiple specialist, do you feel that they are
knowledgeable about your child’s condition before your visit? Is there anything that you would change about your NICU stay? What did you find most helpful during your NICU stay? What are the benefits of the BRIDGE program? Would you change anything about the BRIDGE program?
Top Related