Post on 21-Mar-2021
5/22/2020
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Supporting Parents and Infants During Early Feedings in the
Intensive Care Unit and at Home
Erin Sundseth Ross, Ph.D., CCC-SLP
© 2020, Erin S Ross, All Rights Reserved
Financial Disclosures
Erin Sundseth Ross, Ph.D.
Paid
• Intellectual Property, SOFFITM
• President, Feeding Fundamentals, LLC
Volunteer
• Advocacy Chair, Feeding Matters
© 2020, Erin S Ross, All Rights Reserved 2
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Confidentiality
• Pictures and videos in this presentation are provided with permission from families for the express purpose of trainings conducted by Dr. Erin Ross. No reproduction, in any form, is allowed.
© 2020, Erin S Ross, All Rights Reserved
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Objectives
• List at least one emotion families report having while feeding their infants in the NICU
• Define “nourish” and “feed”
• List at least one resource available to families
• List at least one way staff in the NICU can help parents feel attached to their infant in the NICU
• List at least one area of knowledge parents need to be taught
© 2020, Erin S Ross, All Rights Reserved 4
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Core Values
• The family is the most important and consistent context in which an infant develops (Hanson et al., 1994)
• An informative and supportive relationship with the family will benefit the infant
• Providing support and information for the family will optimize infant development (Achenbach et al., 1993)
© 2020, Erin S Ross, All Rights Reserved5
Long Term Benefits of Parent Education
• RCT, n=91; term, preterm (E) and preterm (C)
• 11 total one-hour sessions
• Longitudinal across 9 years
• Preterm (E) and term infants no different at 36 months and 9 years of age on developmental and academic testing
• Preterm (C) lower scores, p<.05 at 36 months and 9 years
© 2020, Erin S Ross, All Rights Reserved
Achenbach, et al., 1993
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Core Values• Family members are treated as equal partners
• Developmentally supportive care must be a collaborative approach that draws on the expertise, strengths and resources of the family (Hanson et al., 1994)
• Infants are in continuous interaction with their environment (Als, 1986; Sweeney, et al., 2010)
• Infants are active collaborators in their interactions (Als &
Gilkerson, 1995) and their behaviors should be interpreted and responded to by the caregiver
© 2020, Erin S Ross, All Rights Reserved 7
Core Values
• In providing developmentally supportive care, there are basic principles for optimizing behavioral organization and supporting regulation
• Regulation is defined as physiological, neurological, behavioral, and emotional processes “that modulate a wide variety of functions to keep them within adaptive ranges” (Shonkoff and Phillips, 2000)
© 2020, Erin S Ross, All Rights Reserved 8
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Sameroff & Fiese, 2000 Regulation Model
© 2020, Erin S Ross, All Rights Reserved
SELF
OTHER
Development
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Biological Expectations• Uterine environment provides the
fetus with everything necessary to grow and develop:
• Physiologic
• Motor
• Sensory
• After birth, the newborn expects to be cared for by a small, consistent number of people
© 2020, Erin S Ross, All Rights Reserved 10
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Neonatal Intensive Care Units
• Mismatch between biological expectations and environment
• Physiologic
• Motor
• Sensory
• Parental
© 2020, Erin S Ross, All Rights Reserved 11
Disruptions in Parenting
• Need to continue with expected life tasks (groceries, bills, etc)
• Fear/uncertainty of caring for their infant
• Reliance on NICU staff
• Role stress (no longer their infant’s primary caregiver)
© 2020, Erin S Ross, All Rights Reserved
Madhoun & Dempster, 2019
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Disruptions in Feeding Post-Discharge
• Feeding and weight problems are some of the top readmission reasons
• Difficulty controlling the environment
• Goal of avoiding supplemental tube feedings
• Shifting off calculating everything (volume, weight gain)
© 2020, Erin S Ross, All Rights Reserved
Madhoun & Dempster, 2019
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Preterm Infant Feeding Outcomes
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Feeding at Discharge
• Kirkby et al (2007)
• 0.8% of infants (N=4932) born between 32 and 36 weeks GA
were discharged with the need of a supplemental tube
• Jadcherla et al (2010)
• 79% discharged to home fully nipple feeding
• 16.6% discharged home on oral plus tube feeds
• 8.6% on gastrostomy-tube feedings
© 2020, Erin S Ross, All Rights Reserved 15
Breastfeeding or Human Milk?
• Current breastfeeding definitions focus on what the infant receives, NOT HOW
• Where is the breastfeeding relationship?
© 2020, Erin S Ross, All Rights Reserved
Noel-Weiss, et al., 2012
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What Exactly is “Exclusive Breast Feeding”?
• World Health Organization defines exclusive breast feeding as an infant receiving 100% human milk, donor or mother’s
• With this definition, infants may be exclusively bottle feeding, but receiving 100% human milk, and still meet the criterion
© 2020, Erin S Ross, All Rights Reserved 17
Decline in Breastfeeding Rates
• Study of neonatal outcomes (Sweden 2004, 2013)
• Rates declined in all groups:
• GA 22–27 weeks: from 55% to 16%
• GA 28–31 weeks: from 41% to 34%
• GA 32–36 weeks: from 64% to 49%
© 2020, Erin S Ross, All Rights Reserved
Ericson, et al., 2016
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Feeding Problems
• Parental questionnaires at 3, 6, and 12 months (adj)
• Compared early born (25 to 33.6 weeks GA) and later born (34 to 36.6 weeks GA) groups
• No significant differences between groups for:
• Low appetite: 12-14% across study
• High avoidant behavior: 2-4% (3, 6 mos)
• Med-High Maternal anxiety: 25-39% (3, 6 mos)
© 2020, Erin S Ross, All Rights Reserved
DeMauro et al., 2011
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Feeding Problems
• Significant differences (higher rates) in Early Born:
• Oromotor dysfunction at 3 and 12 months
• Borderline (19% vs 13%, and 6% vs. 4%)
• High (10% vs 4%, and 3% vs 0%)
• Avoidant Behavior at 3 months
• High (7% vs. 3%)
• Maternal feeding anxiety at 12 months
• Med-High (37% vs. 27.4%)© 2020, Erin S Ross, All Rights Reserved
DeMauro et al., 2011
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Quality of Feeding Skills
Subjects: N=20
BW<1000 grams; mean GA 27 weeks
• Feedings are prolonged and messy
• Much of food drops out of mouth
• Pace of feeding is rapid
• Increased sensitivity to texture, temperature and tastes
• Both infant and feeder become impatient
© 2020, Erin S Ross, All Rights Reserved
Torola, et al., 2012
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Prevalence of Feeding Problems
n=80 children born ≤30-weeks gestation, seen at 2 years
Eating Subscale of the Infant-Toddler Social Emotional Assessment
• 21 were at risk, and an additional 18 had definite feeding difficulties
• Parents of children with more feeding difficulties:
• higher parenting stress (P =.02)
• more difficulty managing their child's behavior (P =.002)
• more frequent parent-child interaction problems (P =.002)
No associations were found between difficult feeding behaviors and growth, maternal mental health, or family factors.
© 2020, Erin S Ross, All Rights Reserved22
Crapnell, et al, 2015
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Feeding or Nourishing:
Expanding our Goal
© 2020, Erin S Ross, All Rights Reserved 23
Are We all Thinking About the Same Thing?
Feeding Definition:
• To give food
• To supply with nourishment
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Are We all Thinking About the Same Thing?
Nourish Definition:
• To foster development
• To support and encourage, as during the period of training or development
© 2020, Erin S Ross, All Rights Reserved 25
“…Infant feeding is a matter of infant-mother relationship, a putting into practice of a love
relationship between two human beings.”
Winnicott, 1987
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“The feeding relationship is important because … parents
frequently evaluate their premature infant’s health and their competency
as parents by the infant’s feeding success and weight gain before and
after discharge.”
Deloian, 1998
© 2020, Erin S Ross, All Rights Reserved 27
“A baby’s ability to eat and a mother’sability to feed her
baby are at the heart of who she is
as a mother.”
Thomas, 1995
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A majority ofthe time
together in the first year is
spent feeding
Thomas, 1995
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Feelings When Unable to Breastfeed
• n=33 mothers of preterm infants
• Sorrow
• Guilt
• Disappointment
• Frustration
• Insecurity
• Fear (touching, holding or harming)
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Davim, 2011
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Feelings After Successfully Breastfeeding
• Fulfillment
• Pride
• Satisfaction
© 2020, Erin S Ross, All Rights Reserved
Davim, 2011
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© 2020, Erin S Ross, All Rights Reserved
The pressure to “get (the volume) in” the neonate is often then passed along to parents, for whom feeding becomes
something they do “to” their newborn, instead of a relationship-based experience through which communicative interactions
build trust.”
Shaker, 2017
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“Confidence comes from having the
information necessary to assess the
infant during feeding and to intervene
to minimize problems.”
Shaker, 1999
© 2020, Erin S Ross, All Rights Reserved 33
NICU and effect on parents
• NICU stays affect the developing parent-child relationship
• Parents express a feeling of closeness and “attachment” when:
• They have a role as a parent (autonomy, making decisions)
• They provide for their infant (feeding, holding, interacting)
• They receive support from staff
• Parents express a separation when they have to leave their baby in the NICU
• The NICU environment directly influenced the parent’s perception of feeling close, or being separated, from their infant
© 2020, Erin S Ross, All Rights Reserved Treherne, et al, 201734
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The NICU interferes with confidence
• 50 Mothers-PreTerm ; 25 Mothers-FullTerm
• M-PT group had significantly more mothers with clinical symptom of anxiety;
• M-PT reported more uncertainties and worries about breastfeeding, and reports were positively correlated with neonatal risk status;
• Lower BW, higher neonatal clinical risk, and longer length of stay in NICU were associated with more mothers' worries and seeing obstacles for breastfeeding
Padovani, et al., 2011
© 2020, Erin S Ross, All Rights Reserved 35
Maternal Stress and Mental Health
• Maternal distress improves as oral feedings begin
• Maternal worry and “role stress” do not decline after the infant reaches full oral feedings
• Maternal depression and role stress lead to changes in maternal behaviors during feedings
• More stimulation
• Less regulation of milk flow
Park, et.al, 2016
© 2020, Erin S Ross, All Rights Reserved 36
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Learning to Feed…
Subjects: N=12 mothers, 8 fathers
• Three themes identified:
1. Feeding is an emotional experience
2. Feeding requires that you “learn as you go”
3. Feeding is a very technical task requiring learning skills
• Parents felt both positive and negative emotions during feedings
© 2020, Erin S Ross, All Rights Reserved
Stevens, et al., 2014
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Which Skills Need to be Taught?
Subjects: N=16 mothers, infants mean age 28 weeks at birth
• The top five concerns of parents:
• Reading cues
• Co-regulating breathing
• Providing motoric stability
• Regulating milk flow
• Providing rest periods Thoyre, et al, 2016
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Maternal Concerns After Discharge
Subjects: Mothers of infants born <32 weeks GA
• Mothers struggled to interpret infant behaviors:
• including those indicating feeding readiness, hunger and satiation
• Mothers struggled to adjust volume/schedule
• Mothers expressed concern over what they did not know
© 2020, Erin S Ross, All Rights Reserved
Reyna, et al., 2006
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Maternal Concerns After Discharge
Subjects: Mothers of infants born <32 weeks GA
• Mothers did not express concern regarding skill deficits (even when these were present), such as:
• problems coordinating sucking/swallowing and breathing
• ongoing gagging
• ongoing coughing
© 2020, Erin S Ross, All Rights Reserved
Reyna, et al., 2006
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Trajectory of Parental Stress
Prospective, longitudinal study, n=125 (4, 24, 36 mos)
• More parenting stress at 4-mos of age reported by:
• Mothers of multiples
• Mothers of infants with more medical risks and shorter hospitalization
• Mothers with lower education and more depressive symptoms
• Parenting stress decreased over time
© 2020, Erin S Ross, All Rights Reserved
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Spinelli, et al., 2013
When Children Don’t Eat, Families Experience
• All-encompassing fear
• Concerns that are often not heard
• Guilt and a feeling that they are the cause for their children’s growth failure
• Isolation and helplessness
Thomlinson, E. 2002
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Child Influences the Parent
Subjects: N=55; mean age 2 years, 27 with a Feeding Disorder
“having a child with a Feeding Disorder puts the mother-child relationship at risk for more negative feeding interactions” pg. 833
• More intrusive• Less structured
The more worried about her child’s weight, the more a mother’s interactions with her child at mealtimes were impacted
Gueron-Sela, et al., 2011
© 2020, Erin S Ross, All Rights Reserved 43
Food Acceptance
Strategies Resources
Innate Characteristics
Skills & Abilities
Child
Experiential Learning
Innate Characteristics
Skills & Abilities
Parent
Ross, 2016
© 2020, Erin S Ross, All Rights Reserved 44
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Food Acceptance
Anti-Strategies
Resources
Innate Characteristics
Skills & Abilities
Child
Experiential Learning
Innate Characteristics
Skills & Abilities
Parent
Reaction
© 2020, Erin S Ross, All Rights Reserved
Ross, 2016
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Parent
Skills & Abilities
Own likes/dislikes
Parenting Strategies
Ability to role model
Ability to co-regulate
Ability to structure/manage mealtimes
Knowledge of child development, nutrition
Innate Characteristics
Temperament
Beliefs
Resources
Time
Food availability
Financial resources, SES
Child
Skills & Abilities
Oral motor, Gross/Fine motor skills
Sensory abilities
Cognitive abilities / Age
Innate Characteristics
Temperament
Genetic taste capabilities
Experiential Learning
Familiarity of flavor
Feedback from food
Social context
Reinforcement of behaviors
© 2020, Erin S Ross, All Rights Reserved 46
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Food Acceptance
Situationally Effective
StrategiesResources
Innate Characteristics
Skills & Abilities
Child
Experiential Learning
Innate Characteristics
Skills & Abilities
Parent
Reaction
Ross, 2016
© 2020, Erin S Ross, All Rights Reserved 47
Adjusting for Prematurity
Subjects: 72 infants (GA 30 weeks), now 13.7 mos, adj 11.3 mos
• Infant developmental readiness at time of solids introduction
• Parents of infants developmentally ready to start solids:
• Higher satisfaction with infant’s eating habits (P <.006)
• More comfort when feeding their infant (P <.007)
• Less stress during feedings (P <.04)
• Reported better appetites (P <.002)© 2020, Erin S Ross, All Rights Reserved
Chung, et al., 2014
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In Support of Parents:
• Supporting parents during the earliest feedings in the NICU may
• Improve parent-infant attachment
• Reduce stress on the parent
• Improve intake of volume
• The (coach) has a unique position and responsibility for parental education and support in the NICU
Shaker, 2013
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March of Dimes “My NICU Baby” App
• Answers, Tools, Support
• Track feeding and weight
• Track pumping and kangaroo sessions
• And more…
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www.Feedingmatters.org
• Online resource for parents of children with feeding problems
• Online and telephone support for parent-to-parent support
• Resource for professionals
• Annual professional/parent conference (live, live-streamed)
© 2020, Erin S Ross, All Rights Reserved51
Feeding Matters is the first organization in the world solely dedicated to furthering advances in pediatric feeding disorder by accelerating identification, igniting research, and promoting collaborative care for children and families.
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PEDIATRIC FEEDING
DISORDER (PFD)
A consensus paper declaring pediatric feeding disorder as its own stand-alone diagnosis was published in the Journal of Pediatric Gastroenterology and Nutrition in January 2019
● Pediatric feeding disorder is identified as
impaired oral intake that is not age-
appropriate, and is associated with medical,
nutritional, feeding skill, and/or psychosocial
dysfunction*.
*Goday PS, Huh SY, Silverman A, Lukens CT, Dodrill P, Cohen SS, Delaney AL, Feuling MB, Noel RJ, Gisel E, Kenzer A, Kessler DB, de Camargo OK, Browne J, Phalen JA. Pediatric feeding disorder: consensus definition and conceptual framework. JPGN 2019;68(1):124-129. 53
Manikam & Perman, 2000; Patel & Piazza, 2001; Sission, Van Hasselt, 1988; Field et al., 2003; Perske et al, 1997; Sullivan et al., 2000; Martin et al. 2005; DeMeyer, 1979; Schreck, 2004; Williams et al., 2000
Actual incidence is unknown due to mis- and under diagnosis of feeding disorders
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INFANT & CHILD FEEDING QUESTIONNAIRE“Malnutrition and other associated medical concerns are
preventable with early detection & intervention”
AUTHORS
Joan C. Arvedson, PhD, CCC-SLP, BC-NCD,BRS-S, ASHA Fellow
Joy V. Browne, PhD, PCNS-BC, IMH(E)
Amy L. Delaney, PhD, CCC-SLP
Mary Beth Feuling, MS, RD, CNSD
Elizabeth Fischer, PhD
Erika Gisel, PhD, OTR, erg.
Marsha Dunn-Klein, Med, OTR/L
Suzanna Evans Morris, PhD
Erin Sundseth Ross, PhD, CCC-SLP
Colin Rudolph, MD, PhD
Kay A. Toomey, PhD
EDITS
Aimee LangloisProfessor Emerita, Humboldt State University
Trudi Normal-MurchPhD, CCC-SLP
Daniel B. KesslerMD
• GOAL: Improve PCP early identification and
referral of children at risk for pediatric feeding
disorders and appropriate intervention
• RED FLAGS: The questionnaire identifies red
flags for feeding concerns
• PRELIMINARY FINDINGS: 97% Sensitivity &
Specificity6 with 4 questions for identifying a
pediatric feeding disorder.
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“Children learn in the context of
important relationships”
Schore, 1994
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“When the infant is perceived as having meaningful behavior (i.e., communicative intent), the focus changes from a volume-driven to a co-regulated approach, through which the infant guides the caregiver. This is cue-based feeding.”
Shaker, 2013
© 2020, Erin S Ross, All Rights Reserved 57
Cues, Communication, or Conversation?
• SOFFITM conceptualizes feeding experiences as a conversation
• It is more than just ‘listening’ to the infant
• Feeding is:
• Listening
• Responding
• Changing what you do in response to the partner (infant) in the conversation
© 2020, Erin S Ross, All Rights Reserved 58
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Infant-Led Feedings:Change in Caregiver Behaviors Based Upon Infant Behaviors
© 2020, Erin S Ross, All Rights Reserved 59
Examples of Infant-Led Feedings
• Early Feeding Skills Assessment (Thoyre, et al., 2005)
• Infant Driven Feeding Scales (Ludwig & Waitzman, 2007)
• McCain Feeding Protocol (McCain, 2001)
• Co-Regulatory Approach (Thoyre, et al., 2012)
• Breastfeeding
© 2020, Erin S Ross, All Rights Reserved 60
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Infant-Led Feedings, Self-Scheduled
• N=79 = 40 control, 39 experimental (28-36wk PCA; Paired enrollment > 32 weeks)
Feeding Cues Satiation Cues Adverse Events
Crying Turns head away Apnea > 20 secs
Quiet Alert Holds hands in stop manner Oxygen saturation < 85%
Hand-to-mouth activity Falls asleep HR < 80 bpm
Sucking (fingers, fist, pacifier No interest in restarting feed after burp/break
Rooting
Inability to settle after position or diaper change, pacifier
© 2020, Erin S Ross, All Rights Reserved
Puckett, et al., 2008
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Outcomes
• No difference in weight gain (12.1-12.5g/kg per day)
• Average length of stay after enrollment
• 14.5 days (C) vs. 10.0 days (E) (P =0.009)
• Average total number of adverse events
• 12.5 (C) vs. 3.5 (E) (P =0.007)
• Mean PCA on study entry (34.4 weeks)
• Mean PCA on exit (36.5 C, 35.8 E, P =0.02)
• No difference in nurse:patient ratio
© 2020, Erin S Ross, All Rights Reserved
Puckett, et al., 2008
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SOFFITM: Supporting Oral Feeding In Fragile Infants
• Supports begin at birth – include strategies for stability
• Feeding is seen as a result of organization – regardless of medical morbidity
• Focus is on:
• Pleasurable feeding experiences
• Skill development
© 2020, Erin S Ross, All Rights Reserved 63
SOFFITM: Supporting Oral Feeding In Fragile Infants
• Wanting to eat, and having the skill to do so safely and comfortably, lead to volume
• SOFFITM Algorithm assures all caregivers (including parents) use a similar set of decision-points guiding practice to provide continuity of care
• All caregivers respond in the same way based upon infant behaviors
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Feeding Model for SOFFITM
Baseline HomeostasisBaseline Homeostasis
• Physiologic Stability
• Motor Stability
• Behavioral State Stability
Feeding ChallengeFeeding Challenge
• Maintain stability in the face of the additional external challenge of feeding
• Stability and Instability are communicated by the infant through their observable behaviors
Observer vs. Co-RegulatorObserver vs. Co-Regulator
• Observer is Aware of infant behaviors
• Co-Regulator is both Aware of behaviors and Responds to signs of distress with the goal of maintaining or regaining Homeostasis
© 2020, Erin S Ross, All Rights Reserved 65
Ross, 2017
Skill
Efficiency
Endurance© 2020, Erin S Ross, All Rights Reserved 66
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All Cue-Based Feeding Approaches:
• Recognize the importance of physiologic, motor and state stability on initiation and progression of feeding
• Recognize the impact of the caregiver’s decisions on the successful experience for the baby
• Utilize behaviors before, during and after the feeding to determine success – NOT VOLUME
© 2020, Erin S Ross, All Rights Reserved 67
In Summary
• Feeding is much more than volume
• The Feeding Experience influences parents and children both in the NICU and well after discharge
• Our goal is to support skill development and parental confidence to build a strong foundation for both discharge to home AND for later skill development
© 2020, Erin S Ross, All Rights Reserved
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In Summary
• Parents benefit from educational and parental resources in the NICU and after discharge
• Feeding struggles often continue past discharge from the NICU
© 2020, Erin S Ross, All Rights Reserved
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Feeding is the experience…
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