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Introduction to
Family Integrated Care
in the Neonatal Intensive Care Unit
The Beginnings
The Beginnings
Results from Estonia
Compared 84 care by parent with 72 care by nurses babies in
the NICU
Anecdotal = 30% reduction in NI
20% reduction in LOS
50% reduction in nurse utilization
improved parent/staff satisfaction
FiCare Pilot Study
• Pilot
– March 2011-March 2012
– 4 bed spaces in Mount Sinai level 2 NICU
– 40 patients < 35 weeks gestation, low resp support
(CPAP included)
– Excluded palliative care, anomalies, those likely to
transfer out, parents unable to be present
– Parents spent minimum of 8 hrs/day
– Key outcomes: improved weight gain, less
nosocomial infection, increased breastfeeding, less
ROP, fewer patient safety reports
FiCare Pilot Study Results
FiCare Randomized ControlledTrial
• 2 year project – 19 Canadian, 6 Australian,
1 New Zealand NICU
• Infants <33 weeks, parents spent
minimum 6 hrs/day
• Veteran parent program
• Parent classes and education
• Results in early analysis similar to the pilot
study
FiCare Study Protocol
Response to FiCare Study
• Conference in Banff in February 2016
• Intervention units taught the control units
about FiCare
• Control units started to make plans and
commitments to implement in their centres
4 Pillars of FiCare
Staff
Education &
Support
Parent
Education
NICU
Environment
Psychosocial
Support /
Veteran
Parents
Myths About FiCare
Myth:
• Parents will look after
micro-preemies and
take on advanced
nursing skills
Truth:
• Professional
accountability and
responsibility remains
the same
• Nurses help parent
learn what is
appropriate to do and
teach, coach and
support them
Myths About FiCare
Myth:
• Parents will be at the
bedside 24/7 and
have to sign a
contract
Truth:
• Parents are
encouraged to be at
the bedside as much
as possible
• Nurses encourage
parents to be present
during rounds, attend
parent group and be
present for their baby
• No contracts
Myths About FiCare
Myth:
• FiCare decreases the
need for nurses
Truth:
• Nursing patient
assignments remain
the same
• Early on, the nurse
may spend more time
teaching the parent
• Close to discharge
the parent should be
doing most of the
care
Myths About FiCare
Myth:
• FiCare is a top-down
initiative coming from
management
Truth:
• Nurses have been
doing this already for
many years
• The FiCare project
had nurses involved
right from the start,
including traveling to
Tallin, Estonia
• Nursing runs the
steering committee
Staff Education and Support
• Philosophy: All staff develop the knowledge
and skills to fully partner with families and
integrate them into the care team
• Support staff with information and practice
• Provide the tools necessary to help staff
support families
• A new philosophical approach to
interactions with families evolves
Parent Education
• Providing parents with information to learn
how to become integrated into their baby’s
care team
• Learning about their own baby’s condition
• Learning how to become an effective
parent of a vulnerable child
Parent Education Sessions
• Held weekly or monthly – may vary over
time
• An element of parent support at each
session from professionals but also from
each other
• Veteran parent present at sessions
Potential Parent Education Topics
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Orientation to the hospital
Coping with hospitalization
Comforting your baby / pain management
Handling your baby / Infant development
Feeding (breastfeeding, post-discharge etc)
Preparing for discharge
Immunizations
Baby care in the 1st 6 months
Implications for Staff
• Parents will learn things like:
– Every child every time – no needles sticks
without pain control
– It’s okay to wake a baby to put them in KC
• Parents may challenge staff at the bedside
on:
– Positioning
– Gentle diaper changes (no turkey hold!)
– Feeding more slowly (tube feeds)
– More KC
Key Components of Parent Group
• Casual, open, inviting environment
• Responsive to the needs of participants
• Supportive for those who want to share,
and those who prefer to just listen
• Safe environment to speak – “what
happens in group, stays in group”
• Recognize issues that are beyond the
scope of the group – refer to social work
and spiritual care
Staff Role in Parent Groups
• Inform and encourage parents to attend
• Facilitate their attendance by helping them
plan skin to skin and feeding around group
times
• Be a guest and/or a presenter
Key Points about Parent Education
• Go over materials when you provide them
• Do not assume literacy
• Inform parents of the Family Information
Library at Children’s Hospital, which they
can access in person, or call on the phone
– the library will send materials to parents
wherever they are
Partnering with Parents
• Communication boards or other tools at
the bedside
• Go over checklists with them
• Offer patient education materials and info
on where to find more specific information
Why Include Parents in Rounds
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They become more engaged and involved
Understand what is important
Feel part of the team
Investment up front pays dividends later
– Less questions after rounds and in the
night as they know what is going on
– Also know what to look for
– Less stress
•May improve outcome for the infants
Engaging Parents During Rounds
• Should be inclusive of everyone
• Must commit and demonstrate attendance
in rounds
• What are we expecting from them?
– progressive with identification first then after
couple days do PCA and then other things on
sheet.
Stages of Parents in Rounds
Integrating parents as true partners in
rounds is a process that goes in stages:
1.
2.
3.
4.
Attend – be introduced by the nurse or neo
Ask questions at the end
Introduce the baby
Introduce the baby and give information
about the previous 24 hours (using a guide)
Why Include Parents in Rounds
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They become more engaged and involved
Understand what is important
Feel part of the team
Investment up front pays dividends later
– Less questions after rounds and in the
night as they know what is going on
– Also know what to look for
– Less stress
•May improve outcome for the infants
Reality…
• Not everyone will want to participate
• Some will want to but can’t
– Other children outside hospital
– Single parents with other children
– Rural families
– Lack of confidence – but we can help this with
peer pressure!
• But….
– If we change the culture and manage the
change slowly things will improve with time!
Impact on Nursing
• Needs to be collaborative not competitive
• What it is not?!
– Not going to impact on their job safety or
allow a reduction in nursing staff
– Invasive procedures such as IV insertion,
catheterization, resuscitation remain
domain of nursing
• Acknowledge stress from nursing at change
but its a partnership. Avoid repetition.
NICU Environment
The NICU is a terrible and wonderful place:
• Babies struggling
• Worried parents
• Unfamiliar words and
machines
• Noise
• Staff busy, tense
• Babies growing
• Parents learning
• Staff kindness
We interpret the world in terms of
how it makes us feel!
Being a Patient in NICU is Stressful!
From: Harvard University Centre on the Developing Child
(http://developingchild.harvard.edu/science/key-concepts/toxic-stress/)
“Trauma Informed Care”
Becoming “trauma-informed” means
recognizing that people often have many
different types of trauma in their lives.
People who have been traumatized need
support and understanding from those
around them. Understanding the impact of
trauma is an important first step in becoming
a compassionate and supportive community.
From: The Trauma Informed Care Project.org
Impact of Trauma
• Alters biology – stress hormones negatively
impact development
• Immune system compromise
• Behavior – unpredictable, less reasoning
• Mental health – can babies get depressed?
– Ability to develop trust
How the NICU Environment is
Traumatizing
To Babies:
• Painful procedures
• Sleep interruption
• Constant noise
• Unwelcome handling
• Discomfort from
feeding, medications,
indwelling devices,
respiratory failure etc
To Parents:
• Lack of control over
events
• Conflict with staff
• Guilt
• Difficult place to
recover from delivery
• Rules!
• Inconsistency in
communication
Transition from Rule Based to
FiCare
Standard Care
• Visiting hours
• Rules about what
they can do and when
they can do it
FiCare
• Parent/family led
visiting – what works
for them
• Seeking what we can
do to help meet their
needs
• Focus on helping
them integrate into
the team
FiCare Environment
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Welcoming to whoever comes
Supportive of family's needs
Accessible and comfortable
Inclusive rounding policies
Visiting hours? – partnership based instead of
rules based
• Make the best use of the space you have
Making the Environment
Be present with the
person (baby) during
care:
• Watch facial
expressions
• Watch for signs of
stress
• Respond to them –
slow down, remove
stress, support – until
stress signs diminish
Be present with
parents:
• Active listening
• Ask for their story and
be patient – don’t look
too busy to listen
• Talk about what they
want, how they can
be partners
• Find common goals
Parents as Partners
• Gradual process incorporating them into
bedside care
• Gradual process incorporating them into
rounds – starts by being there, then
introducing their baby, progresses to
presenting more details about their baby’s
condition as they feel comfortable
• More time spent early on pays off with
parents taking over much of the care
Sharing Bedside Care
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Nurse Responsibilities
Provide orientation
Prepare and check
feedings
Administer gavage feed
Record vital signs
Ensure probes and leads
in place
Adjust oxygen support
Help parent learn to
weigh, bath, change
diaper
Document in chart
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Parent Responsibilities
Learn and follow
Be double check on milk
Hold the syringe during
gavage feeding
Breast or bottle feed
Learn to reposition
probes and leads
Adjust oxygen prongs
when they come out
Bath & weigh baby when
off vent.
Complete checklists
Psychosocial Support
• Social workers – already a big part of what
they do
• Mental health workers – if possible
– Psychological support
• Nurses/Physicians/Allied Health/Support
Staff encourage parents to attend group –
determine what support needs parents
have
Veteran Parent /
Peer Psychosocial Support
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Family Program Coordinator
Veteran parent “buddies”
Veteran parents at parent group meetings
Veteran parent volunteers in the unit
providing informal peer support
Challenges for Staff
• Promoting family participation in care
when families are facing multiple other
issues
• Partnering with families who are difficult to
partner with
• Not giving the message to parents that we
are “too busy” for them – even when we
are busy – time invested early pays off in
the end!
Put yourself in their shoes!
• Imagine yourself
in an incubator
• Hear the sounds
• Feel the
environment
Kangaroo Care
• The cornerstone of family integration in
care
• Key points:
– Must be direct skin contact
– Can be any amount of time, but needs 1 hour
to trigger all positive effects
– It’s okay to “wake” a baby to put them in KC
– KC is the best place to recover from a hard
day for the baby
Parent Perspective
NICU Parent Story