B abies R eaching I mproved D evelopment and G rowth in their E nvironment

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


35%

27%

32%

2%

Santa Clara County

Projected SCC Demographics 2050


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


Design Initial parent interview 48hrs prior to NICU

discharge 2nd interview 1 month after discharge


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”


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.


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.


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?