From the NICU to Home: Mother`s Experiences

7/26/2016
NICU Consortium Educational
Welcome
Meeting/Webinar Agenda
July 27, 2016
9:00 am
9:15 am
10:15 am
10:30 am
11:30 am
11:35 am
To 12:30 pm
Welcome, Announcements
"From the NICU to the Home: Mothers' Experiences"
Paulina Erices, IBCLC
Jennifer Harrison, MS, CLE, CIMI
Break
“Smooth Way Home Update”
Jennifer Harrison, MS, CLE, CIMI
Smooth Way Home
Adjourn
NICU Consortium Steering Committee –
You may join us if you wish
Thank you to our 2016
Grantors and Sponsors
Newborn Hope for their support of the “Safe Sleep Going Home” Program
MedImmune Advocacy - for the Community Connections – Transitioning Parents from the NICU to the Home and Community” Grant to learn about parents
experiences and recommendations for transitioning home from the NICU
Coram – Exhibitor Support for the “Supporting the Development of Infant Feeding from the NICU to Home When G-tube Feedings Are Necessary”
HCP – Colorado Department of Public Health and Environment, Program for Children with Special Health Care Needs for their continued support of the
NICU Consortium Educational Meetings /Webinar
If you know of an organization or business that would be interested in supporting the efforts of the NICU Consortium and Special Kids, Special Care please have them
contact Barbara Deloian at specialcare@sk-sc.org
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From the NICU to Home: Mother’s
Experiences
Paulina Erices, IBCLC
Jennifer Harrison, MS, CLE,
CIMI
Background
• Community Connections Grant.
• Needs assessment to identify and prioritize SKSC services and
create recommendations for transition from NICU to home.
• 27 interviews.
• Parents were refereed by providers, community supports,
friends, or self referred.
No disclosures.
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Objectives
• To identify the themes presented by mothers about
their experience transitioning from the NICU to the
home.
• To investigate the protective factors in the motherbaby relationship as they move from the NICU to the
home.
• To develop effective strategies to support families as
they transition from the NICU to the home.
Mothers’ background
8 Latinas
2 Asian
1 Black
22 White
14 stayed home
8 < PT
2 part time
3 full time
50 pregnancies
2 twins
1 triplets
Several loses
4 single
23 married.
11 college education
6 postgraduate
3 technical
1 HS
6 <HS
Born between 25 and 39 weeks
gestation
Hospital stay from 8-111 days
Home from 7 days to almost 3
years
13 were first babies
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Interview Guide
Open-ended questions & Likert Scales
Questions about NICU experience & home experience
Questions about physical health and mental health
of all family members
What worked & what didn’t?
Access to community resources
What you
wish you had known or had received?
What are the most effective strategies to
support families as they transition from the NICU
to the home?
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3 Main Themes
1. Knowledge and participation in decisions concerning the
health/development of their babies as a way to establish
their parental role.
2. Need for support during the transition period after NICU
discharge.
3. Maternal wellbeing, including feelings of isolation and
changes in lifestyle.
Knowledge and participation in decisions concerning
the health/development of their babies as a way to
establish their parental role
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Knowledge and establishing parental role
The rollercoaster experience
“The ups and downs are constant, one day they tell you they (the babies)
are progressing and next day they have developed complications…
you never know what to expect”
(Mother of triplets born at 32 weeks)
Knowledge and establishing parental role
Mothers sought detailed information about the health of their babies and
demanded to be part of their care.
“My aunt is a NICU nurse in another state, so I took pictures of the monitors from my
phone every day, morning and night, for her to help me read what they meant. I didn’t
trust the nurses as much as [I trusted] my aunt”
(mom of a baby born at 34 weeks gestation)
Understanding their babies condition brings comfort to parents; additionally, being
considered in the decision-making affirms their role as caregivers.
“In the other NICU, we were present at hand-off. It was important to me to be part of
that because they would ask me too what I saw; I was part of it. Then we transferred
and I was asked to leave [during hand-off]. It was shocking to me”
(mom of baby born at 28 weeks gestation, who was transferred to a different NICU for a month before
going home).
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Knowledge and establishing parental role
Spanish speaking mothers developed other strategies to establish their parental role.
“When the nurses came to see him there was nothing for them to do. I had taken his
temperature, fed him, changed him. The nurse would just look and check that everything
was OK”
(mom of a baby born at 32 weeks gestation).
Knowledge and establishing parental role
• The altered parental role was perceived to be the most stressful aspect of
having an infant in the NICU (Obeidat, Bond & Callister, 2009).
• Preterm birth negatively impacts the attachment relationship between mother
and baby and on maternal responsiveness to the infant (Evans, Whittingham & Boyd, 2012).
• The effect of the lack of understanding of infant cues (due to separation or
baby’s development) disturbs the bond, leading parents to label their babies as
difficult. Additionally, the vulnerability of parents to suffer mental health
issues leads to increased negative outcomes for their babies (Craig et al, 2015).
• Research supports the inclusion of families as true collaborators in the care of
their children in the NICU (Hall et al (2015b).
• Research shows that it is not only positive to facilitate the transition home, but
it has multiple positive benefits such as mothers showed lower levels of stress,
babies gained more weight, babies were discharged earlier, and breastfed
more often and for longer (Craig et al, 2015).
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Knowledge and establishing parental role
• Not all parents described the NICU as stressful by all families.
– “beautiful time”
– multiple pregnancy losses in the past and had undergone years of
fertility treatment.
– miracle babies, even if experiencing serious medical conditions,
brought intense happiness.
– those parents had prepared for an early delivery, had visited the NICU,
and had a strong relationship with their medical team.
– reassuring presence of the medical team
But, what happens when they get home?
Knowledge and establishing parental role
Giving care to a newborn is a fundamental maternal attachment
behavior, and one which is disrupted within the NICU
environment (Obeidat et al (2009); however, parents can:
– Prepare for the NICU experience when known high risk.
– Be included in the care of their baby.
– Ask many questions and receive complete answers.
– Take charge of their baby’s care, if possible.
– Breastfeed or pump milk for their baby.
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Support after NICU Discharge
Support after NICU Discharge
Specific aspects of the NICU experience exacerbate stress for
parents, such as the physical environment, the baby’s physical
appearance or behavior, staff-parent interactions, and
alterations in the parental role. (Obeidat et al., 2007).
In our interviews, the most mentioned caused of stress during
and after the NICU were:
(1) babies’ appearance
(2) staff-parent interactions
(3) life style changes (after going home).
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Life-Style changes
Support after NICU Discharge
• Difficulties providing care at home increased their feelings of
isolation. They felt tired and hopeless.
“My friends and family didn’t know what to do, how to help, so
they stayed away, it would have been nice if someone had
stopped for a cup of tea, just to check in. Everything changed
since then, all of my closest friends now are moms who I have
met after she was born”
(mother of a baby born at 34 weeks gestation).
• Most mothers felt more tired, got less sleep, and had more responsibilities than
they had anticipated. Additionally, about a quarter of the mothers in study reported
eating less and needing to make major adjustments to their fun/social activities to
include the infant (Gennaro, Grisemer & Musci, 1992).
Support after NICU Discharge
•
Life-Style changes
• Mothers described a clear shift in their social life, as babies’
routines and health concerns became a priority.
– Stopped or reduced their work hours, which reduced their social
network in addition to increasing financial stress.
– Latino American mothers did not describe changes in eating or social
life, as they had friends or family members visiting and taking care of
them, which may be explained by their cultural traditions.
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Support after NICU Discharge
Changes in social network.
• Mothers helped each other while at the NICU. A Spanish speaking
mother described how she got permission to care for her friend’s
baby when her friend was not there.
“One day her baby cried for over 3 hours. They were letting him cry. I couldn’t help it and I
went to hold him, but I got in trouble. After that, we got permission to take care of each
other’s babies, so they wouldn’t be crying if one of us was not there.”
• Other mothers mentioned the activities organized at the hospital, like
a scrapbooking class, as a source of support. They shared experiences
meeting other families in the NICU, or the breastfeeding groups they
joined after they moved home.
“When a problem arise, I call them, even if they also don’t know what to
do,
at least they get it”
(mother of a baby born at 27 weeks gestation)
Peer-support
Support after NICU Discharge
• Identification as a NICU MOM
• Mothers rank peer-support as the most important factor in developing a
maternal role.
– overcome isolation
– allow mothers to get reassurance, guidance and support
– developing their identity as mothers.
• Breastfeeding peer counselors as a source of information, encouragement,
and support because family and friends could not relate to their situation
(Rossman, Green and Meyer, 2015).
• Psychosocial support is essential to mitigate the risks factors for mothers
developing postpartum depression, anxiety disorder, and post-traumatic
stress disorder. The shared experienced of peers allows for acceptance and
provides foundations for the development of the caregiver role (Hall et al. (2015a).
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Maternal Mental Health
Maternal Mental Health
• How are you?
• Mothers with known high risk pregnancy were aware of
vulnerability.
• None of the mothers recall to have been screened for PPD.
• They had suffered pregnancy lost, but not pregnancy loss
counseling.
• None of them were receiving counseling services. Two of them
mentioned that at about a year of their babies age, they realized
they needed help.
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Going home!
• Happy and relieved, but also not prepared.
“I wish someone had told me how to know if
they were too hot, or too cold… what to do with
a baby, do you bathe them every day? What
time to put them to sleep? What to look for in
case something goes wrong! I had not thought
about any of that”
(mother of triplets born at 32 weeks gestation).
• Readiness to go home. Parents’ perception of readiness is highly
impacted by the cues from the baby and the NICU staff (Burhnham, Feeley and
Sherrand, 2013).
• Half of the mothers interviewed had difficulties getting continuation
of care.
– These situations were particularly unsettling for the mothers, while at the
same time, caused a strong sense of maternal role attainment when
successfully resolved.
• Most mothers mentioned the lactation consultant at the hospital as
their main source of support and information, even when not nursing.
• The Spanish speaking mothers had many questions about their baby’s
health and development, even at the time of the interview.
“I received a piece of paper as her discharge document. I was expecting
a lot more information specific to my baby. It seemed that they just
unplugged the monitors and said: grab your baby!”
(mother of a baby born at 27 weeks gestation).
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Protective factors
•
•
•
•
•
Being prepared
Family.
Background.
Taking charge in the NICU.
Positive interactions with NICU
staff- one contact person.
• Breastfeeding.
Recommendations
• Nurse or lactation visit. Not ”just call
me for questions.” They always have
questions.
• Respite Care.
• Letter to families.
• Someone to visit with. “A cup of tea.”
• Clear and specific discharge plans. Not
extra stuff.
• Mental health support.
• Community resources list. Community
supports available – logistical, financial,
emotional, peer groups.
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Conclusion
- Parental role
development.
- Support and information
during NICU stay, but also
as they transition home,
and after (coordination of
care).
- Guidance to adjust to life
changes successfully and
positively.
- Whole family approach.
References
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Blackburn, A. C. (2010). Stories, ethics and the interpretation of meaning: Bearing witness to mothers' stories of their neonatal intensive care unit experience (Order No. AAI3367164). Available from
PsycINFO. (622195116; 2010-99020-117). Retrieved from http://search.proquest.com.ezaccess.libraries.psu.edu/docview/622195116?accountid=13158.
Burnham, N., Feeley, N., & Sherrard, K. (2013). Parents' Perceptions Regarding Readiness for Their Infant's Discharge from the NICU. Neonatal Network: The Journal of Neonatal Nursing, 32(5), 324334. doi:10.1891/0730-0832.32.5.324.
Carter, J., Mulder, R., Bartram, A., & Darlow, B. (2005). Infants In A Neonatal Intensive Care Unit: Parental Response. Archives of Disease in Childhood - Fetal and Neonatal Edition, 90(2), F109-F113.
Evans, T., Whittingham, K., & Boyd, R. (2012). What helps the mother of a preterm infant become securely attached, responsive and well-adjusted? Infant Behavior and Development, 35(1), 1-11.
doi:10.1016/j.infbeh.2011.10.002.
Gennaro, S., Grisemer, A. and Musci, R. (1992). Expected versus actual life-style changes in mothers of preterm low birth weight infants. Neonatal Network. (3):39-45.
Hall, S., Cross, J., Selix, N., Patterson, C., Segre, L., Chuffo-Siewert, R., . . . Martin, M. (2015a). Recommendations for enhancing psychosocial support of NICU parents through staff education and
support. Journal of Perinatology, 35, S29-S36. doi:10.1038/jp.2015.146
Hall, S., Ryan, D., Beatty, J., & Grubbs, L. (2015b). Recommendations for peer-to-peer support for NICU parents. Journal of Perinatology, 35, S9–S13-S9–S13. doi:10.1038/jp.2015.143.
Holditch-Davis, D., White-Traut, R., Levy, J. A., O'Shea, T. M., Geraldo, V., & David, R. J. (2014). Maternally administered interventions for preterm infants in the NICU: Effects on maternal psychological
distress and mother–infant relationship. Infant Behavior & Development, 37(4), 695-710. doi:10.1016/j.infbeh.2014.08.005.
Hynan, M., Steinberg, Z., Baker, L., Cicco, R., Geller, P., Lassen, S., . . . Stuebe, A. (2015). Recommendations for mental health professionals in the NICU. Journal of Perinatology, 35, S14-S18.
doi:10.1038/jp.2015.144.
Lefkowitz, D., Baxt, C., & Evans, J. (2010). Prevalence and correlates of posttraumatic stress and postpartum depression in parents of infants in the neonatal intensive care unit (NICU). Journal of
Clinical Psychology in Medical Settings, 3, 230-237. doi: 10.1007/s10880-010-9202-7.
Obeidat, H. M., Bond E. A., & Callister, L. C. (2009). The Parental Experience of Having an Infant in the Newborn Intensive Care Unit. The Journal of Perinatal Education, 18(3), 23–29.
http://doi.org/10.1624/105812409X461199
Our Vision. (2011). Retrieved December 16, 2015, from http://www.specialkids-specialcare.org
Purdy, I., Craig, J., & Zeanah, P. (2015). NICU discharge planning and beyond: Recommendations for parent psychosocial support. J Perinatol Journal of Perinatology, 35, S24-S28.
doi:10.1038/jp.2015.146.
Rossman, B., Greene, M. M., & Meier, P. P. (2015). The role of peer support in the development of maternal identity for “NICU moms”. Journal of Obstetric, Gynecologic, & Neonatal Nursing: Clinical
Scholarship for the Care of Women, Childbearing Families, & Newborns, 44(1), 3-16. doi:http://dx.doi.org.ezaccess.libraries.psu.edu/10.1111/1552-6909.12527
Stacey, S., Osborn, M., & Salkovskis, P. (2015). Life is a rollercoaster…What helps parents cope with the Neonatal Intensive Care Unit (NICU)? Journal of Neonatal Nursing, 21(4), 136-141.
doi:10.1016/j.jnn.2015.04.006
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NICU Consortium
Break, Networking, and
Upcoming Educational Programs
Sixth Annual Breast Feeding Symposium - August 2nd 2016 - 5pm-9pm
Longs Peak Room at PSL - COST: $25.00 (PSL employees); $35.00 all others
Register by calling Gina Minert: 303-839-6252 or regina.minert@healthonecares.com
Beginning Rhythms and Keys to Caregiving – Thursday and Friday September 8 – 9, 2016
For more information contact Barbara at specialcare@sk-sc.org
Colorado Breastfeeding Conference - Friday, September 16, 2016
Arapahoe Community College in Littleton, CO.
For more information contact Paulina Erices
Jennie Harrison
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Conflict of Interest Disclosure
Jennie Harrison, MS, CIMI, CLE
• Has no real or apparent conflicts of interest to report
Objectives:
• Participants will be able to identify Smooth Way Home
background, goals, and components
• Participants will learn ways to support fragile infants in their
transition from NICU to home
• Participants will learn needs and issues that face NICU families
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MEETING THE NEEDS OF
FRAGILE INFANTS AND
THEIR FAMILIES AS THEY
TRANSITION OUT OF
THE NICU AND INTO
THEIR COMMUNITY
This work was made possible by generous support from
Dignity Health
Our Background
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Smooth Way Home

Identified Needs

Connection with Services

Families in Crisis

Importance of Early Intervention

Funding

Growth
Identified Needs and Issues
• Trauma and stress for families
• Costly re-admissions for NICU graduates
• Missed opportunities to support babies’
optimal growth and development
• Missed opportunity for families to understand
and be connected with community services
while in the protected environment of the NICU
• Lack of coordination, communication, &
understanding between NICU and community
providers
• Lack of training for community providers in care
of fragile infants
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Consortium of Community Stakeholders
 State agencies
 10 Community Hospital Neonatal
Intensive Care Units
 Community Providers
 Parent advocacy groups
 Community physicians
 Health insurance plans
 Neonatologists
 NICU Staff
Purpose
Improve the social, developmental, and
medical outcomes of very fragile infants and
their families by enhancing the coordination of
care and the quality of services provided to
them as they transition from the NICU back to
their home and community.
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Current Focus
•
•
•
•
Hospital Teams
Feeding Taskforce
Professional Development
Parent Support
 NICU Manual
 PMD
• Sustainability
Program Components
I. Professional
Development
III. Parent
Support
II. Systems
Building
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Desired Outcomes
 Increase the number of NICU babies who are
connected with early intervention services
prior to discharge or very shortly after
discharge.
 Provide training and technical assistance to
the community of early intervention
providers related to specialized
developmental assessment tools and
intervention approaches appropriate for very
fragile newborns and infants.
Desired Outcomes
 Provide mentoring and resource support for
families whose babies are transitioning home
from the NICU
 Special emphasis on support for families whose
babies have eating/feeding disorders (very
prevalent in this population, and often underidentified and under-supported)
 Provide increased screening and support for
parents coping with Perinatal Mood Disorders
(PPD, PP OCD, PP Anxiety, PTSD)
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I. Professional Development
Professional Development Models
 BABIES and PreSTEP Models
 1 Day Introductory Training
 2.5 Day Intensive Workshop
 8 Month Learning Collaborative
 Target: Community early intervention
providers
 Funded by Dignity Health and Arizona
Department of Health Services
Lead Consultant and Trainer
Joy V. Browne
Ph.D., PCNS-BC, IMH-E
Clinical Professor of Pediatrics and
Psychiatry Director WONDERbabies
“Ways of Nurturing Development through
Enhancing Relationships for Babies”
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II. Building Systems
Work with Arizona NICUs

Development of an Early Intervention Clinical Pathway

Template to be used and adapted by individual hospital teams.

Regular Early Intervention Clinical Rounds, and identified
timeline/benchmarks for referral and coordination activities.
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NICU Smooth Way Home Teams
Smooth Way Home Manager
Early Intervention Representative
Community Health Nursing Representative (NICP Program
NICU Social Workers
Discharge Coordinator
Developmental Specialist
March of Dimes Representative
Therapists
Parent(s)
It’s all about the details…
•
It hasn’t been easy!
•
Little changes make a BIG difference
•
Not every hospital looks the same
•
Have a plan, but also learn as you go
•
BE FLEXIBLE!
•
BE PERSISTENT!
Never lose sight of the importance of the work
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III. Parent Support
Parent Support
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Emotional Effects
Expected Experience
Actual Experience
NICU and PMD
Postpartum depression is the number one
complication of pregnancy
28%-70% NICU Maternal Incidence
NICU PTSD
After 30 Days
15%-53% of mothers
8% of fathers
4 Months Later
9% of mothers
33% of fathers
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NICU PMD & Risk of Abuse and Neglect
•
•



NICU setting makes it more
difficult to bond with baby
Once home, babies are more
“difficult” than non-NICU babies
fussiness
medical follow-up
eating

Strain on relationships

Higher rates of
Perinatal Mood
Disorders
Smooth Way Home & PMD
 NICU Parent Support Groups

In and Out Patient
 Bedside Support
 Training for Professionals
 Screening
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Additional Resources for Parents
•



NICU Parent Resource Manual
Over 200 have been disseminated
On-line in Spanish and English
Additional funding from Raising Special Kids’ F2F
HIC grant and ADHS OCSHCN
• Trained Parent Mentors
 Specialized expertise in working with fragile
infants
 Specialized expertise in working with infants with
eating/feeding problems
• Infant & Child Feeding Questionnaire ©
– Emailed Link
Feeding
•
SWH NICU Feeding Task Force Team
 Pilot: St. Joseph’s Hospital
•
•
Addition of feeding plan to Clinical
Pathway
Meeting with other Smooth Way Home
hospitals
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Feeding
Infant and Child Feeding Questionnaire©
• Authored by nationally-recognized feeding experts
• Aimed to help improve early identification
• Questions are age-specific based upon the birth
date of the child and adjusted if the child was born
prematurely
• Questions available through 36 months. After 36
months, all feeding skills should be mature
• Red flags indicate there may be a potential feeding
struggle
Our Dreams for the Future!
Develop cadre of trainers who can build capacity in
our professional community to meet the needs of
fragile infants and their families.
Expand scope of Smooth Way Home training.
Implement the Smooth Way Home Clinical
Pathway in all Level 3 NICUs in AZ.
Increased availability of mental health services.
Planes on the runway…
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Our Dreams for the Future!
Better outcomes for
babies and families!!
Questions? Comments?
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NICU Executive Committee
Chair/Secretary
• Carolyn Kwerneland
Tri-county Health Department - HCP Coordinator
Co-chair
• Lori McLean, RN, BSN
Boulder County Health Department - HCP Coordinator
Treasurer
• Sarah McNamee, LCSW
McNamee and Associates
NICU Representatives
• Kathy Farnum, RN, BSN, CCM
Case Manager NICU North
Children’s Hospital Colorado
•
Kendra Perkey, MS, RD, CNSC
NICU Dietitian/Supervisor
Rocky Mountain Hospital for Children
Community Representative/ SKSC BOD Liaison
• Renee Charlifue-Smith, MA, CCC-SLP
University of Colorado Denver, JFK Partners, ENRICH
•
Sophia Yager, RN, BSN
Nursing Supervisor
Jefferson County Public Health,
Parent Representative
• Amber Minogue
Mom of Olive and Riley
Denver, Colorado
MCH Nursing Consultant
• Barbara Deloian, PHD, RN, CPNP,
IBCLC
Special Kids, Special Care
NICU Consortium Educational Meetings/Webinars
• Next Meeting – October 26, 2016
9 AM to 11:30 AM
If you would like to present a topic or hear a topic that
would be of interest, please let us know.
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Special Kids, Special Care
Sign Up
 For info about either of these program send Barbara an e-mail at: specialcare@sksc.org
 Safe Sleep Going Home Program: Wearable Sleep Sac Blanket Requests
 Family Support Grant - Applications for newborn cribs or other health support services and supplies needed by families
 To receive announcement about future NICU Consortium Meetings, the newsletter,
or other information, please sign up on the website
 Website: www.specialkids-specialcare.org
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