Transcript Health visiting and preterm babies

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Health visiting and preterm
babies
Rose Ciavucco – Neonatal Discharge
Planning Co-ordinator
Fiona Corcoran – Health Visitor
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Aims and objectives
To work towards a seamless transfer home from NICU for
preterm babies and their families by: improving communication between the NICU and HV
service - inter-agency communication and
collaborative working are core concepts of Working
together to safeguard children (DfCSF 2013)
 Enhancing the knowledge of health visitors regarding
the care and needs of preterm infants
 To improve the experience of families with preterm
babies by providing timely, appropriate information,
advice and support
 Supporting health visitors with training and resources
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programme
9-9.30 Registration
Welcome and background
 Topics for discussion
 Group work – impact on family
 Parent journey
 Discharge planning and communication
 Complex needs and home oxygen
 CAKE BREAK
 Nutritional needs of the premature infant
 Feeding - breast & formula milks
 Post discharge vitamins & minerals
 Weaning
 Common Digestive problems
 Growth and development group work
 Emotional support
The Chance of a lifetime?
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(Bliss Report 2010)
 Only half of parents had an agreed plan
at discharge with community health
professionals.
 More support for families is clearly
needed.”
 Only two-fifths of parents (41%) had any
contact with their health visitor before
discharge.
 55% of infants discharged from UK neonatal units have
no access to specialist community care provision
(Walston et al 2011)
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SSoTP vision statement
 Everyone benefits from equal access to
health and care services when and
where they need it.
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Risk assessment
 West Midlands Perinatal Institute(2011) Confidential
enquiry into perinatal mortality links avoidable infant
deaths with: increased levels of deprivation
 substandard practice in communication with mothers
and between disciplines
 Poor postnatal support
 Inadequate information sharing between midwifery,
health visiting and social services
 Mothers of infants transferred for neonatal care are at
increased of gaps in follow up care.
 Recommends targeting of services to address needs
of vulnerable infants and provide more equitable
care.
Background
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 Since the withdrawal of the community neonatal service
(UHNS) there has been a gap in service provision around
practical and emotional support for parents of babies leaving
the neonatal unit (Howell and Graham, (2011), POPPY Study
(2009), Walston F, et al. (2011))
 This has been identified by parents and health visitors following
several incidents resulting from ineffective communication
with the neonatal unit.
 This resulted in a task group being set up between the NICU
and HV service to look at discharge planning and
communication.
 Focus groups of parents and health visitors have identified the
following areas where clarification of information is required.
Areas for discussion:8
 Discharge planning/communication
 Feeding and weaning
 Gastro-oesophageal reflux
 Vitamins/medications
 Growth and development (plotting in CHR and ASQs)
 Physical vulnerability (thermo-regulation, infection, respiratory
compromise) - Home oxygen
 Developmental issues
 Emotional support
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Definitions of prematurity
Tucker and McGuire Epidemiology of Preterm Birth
BMJ 2004
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Classification
Birthweight
Low Birthweight
(LBW)
< 2500 grams
Very Low
Birthweight
(VLBW)
< 1500 grams
Extremely Low
Birthweight
(ELBW)
< 1000 grams
Wilson J 2014
Group work - scenario
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 Family with 2 children, 5years and 2 years
 Mum 28 weeks pregnant – goes into preterm labour
 Baby girl is born weighing 2 lbs and transferred to NICU
 Group 1:
 describe emotional impact on family, during infant’s stay on
NICU and on transfer home
 Group 2:
 Describe the practical impact on the family
 Both groups  what are their needs?
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Group 3
 Same family – you are the Health Visitor
 You receive a phone call from Paediatric Liaison
informing you of the infant’s birth and admission to
NICU.
 Describe the impact on you as a professional in both
emotional and practical terms.
 How can you support this family?
 What are your needs?
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Group1
emotional impact on family a of baby’s
admission to NICU
 Emotions:-
 Shock, fear, denial, grief
 Joy, love, maternal/paternal instincts
 Protective vs helpless
 Blame/guilt/stress/strain on relationship
 Questioning, need for answers
 Hope, plans for future
 Supporting siblings
 Baby blues/post natal depression/PTSD (Pierrehumbert
2003)
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Group 2
practical impact on family of baby in NICU
Physical – maternal wellbeing, emergency delivery
Establishing and maintaining lactation, expressing
breastmilk, equipment, storage, transportation
Care of siblings
Both parents exhausted
Financial implications
Car parking/travel
Baby equipment suitable for preterm baby
Heating bills
Time off work
Isolation (Vulnerable Child Syndrome, Green and Solnit 1964)
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family’s needs
 Emotional support - extended family and friends,
religious leaders, peer support, on line forums
 Professional support and advice - NICU staff, midwife,
Health Visitor, infant feeding team
 Parental mental health assessment and support
(Brugha 2010) – listening visits
 Information on preparing the home environment.
 Financial support and advice
 Time to come to terms with preterm delivery and
grieve for expected full-term baby
 Additional physical/developmental needs of baby
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PARENT JOURNEY
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Transfer to community care
 Literature supports the need for a
seamless transfer for NNU graduates
(Toolkit for High Quality Neonatal Services, DoH
2009, American Academy of Paediatrics (2008),
Bliss Report (2011)
 Research highlights the vulnerability of these
infants and their parents (Teti 2005, Discenza, D.
(2009), Pierrehumbert B et al (2003)
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Ready for home?
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Discharge planning
 Paediatric Liaison Health Visitors (PLHV) visit the NNU twice per
week to collect details of new admissions
 The PLHV informs the appropriate HV team who can arrange the
primary visit (at home or in the NNU)
 It is up to the HV to communicate with the NNU/parents re the
infant’s progress.
 The NNU should inform the HV of the provisional discharge date
and any discharge planning meetings.
 Arrangements can then be made for a home visit as soon as
possible following the infant’s discharge.
 The GP and HV should receive copies of the discharge letter
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Complex needs
 Infants who are extremely preterm or have
more complex needs may be referred to
Hospital at Home or the Community
Paediatric Nurses depending on medical
needs.
 Babies on home oxygen will be monitored
by H@H for the first 6 weeks and then be
assessed as to on-going needs. In some
cases these infants will be in the care of the
HV whilst still on home oxygen.
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Coffee and Cake Break
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Growth and Development
 Child health record - weight and head
circumference charts for preterm infants from 32
weeks gestation.
 May be started in the NNU and continued until
42 weeks gestation (2 weeks post term).
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CHR preterm chart – commenced in
NICU - baby born at 34 weeks gestation
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Child health record – weight chart
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From 2 weeks post term (42 weeks) the weight
should be plotted at their actual age with an
arrow drawn back to their corrected age.
continue for the first year for infants born at or
above 32 weeks gestation, and until 2 years old
for those born at less than 32 weeks gestation.
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Examples –
1) Lucy born at 34 weeks gestation (i.e. 6
weeks early) and now aged 10 weeks
old, weight 3.5kg –
which centile line?
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Lucy (34 weeks gestation, chronological age 10
weeks) - Plot at 10 weeks and draw an arrow back
by 6 weeks to 4 weeks corrected age – 9th centile
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Example 2)
Poppy born at 28 weeks gestation (12
weeks early) and now 20 weeks old,
weight 3.5kg – which centile line?
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Poppy (28 weeks gestation, actual age 20 weeks),
plot at 20 weeks and draw arrow back by 12 weeks
to 8 weeks – 0.4th centile
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Physical vulnerability
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Temperature regulation
Immature thermoregulatory system
Lack of insulating body fat and internal brown fat.
Room temperature approximately 21 degrees* – may need
to be higher depending on size, gestation and wellbeing of
baby.
Clothing several light layers – may need cardigan and hat*
initially on transfer home
will adjust quickly over first week to normal home conditions
appropriate for any newborn.
Avoid swaddling but nesting* provides warmth and security
Skin to skin/kangaroo care but avoid co-sleeping/bed/sofa
sharing if possible due to increased risk of sudden infant
death syndrome*
(Crawford 2010, McMullen et al. 2008, FSID 2009,Blair et al
2006)
Infection risk
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Immature immune system (Clapp 2006), antibiotics
Protected environment within NICU
Gradual exposure to outside world starting with home
and family
Recommended to avoid crowded locations and
particularly children for first few weeks
Immunisation as recommended in Healthy Child
Programme – DH/DCSF (2009)
Start at 8 weeks actual age (not corrected) - Given in
NICU if necessary
Extra immunisations:Palavizumab *(synagis) for Respiratory Syncitio-Virus
prevention in children with cyanotic heart disease or
chronic lung disease
Influenza
Hepatitis B (if at risk due to maternal infection or
substance misuse)
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Chronic lung disease
(Broncho-pulmonary dysplasia)
Defined as still requiring additional oxygen at 36 weeks post
conceptual age* (Wilson 2014)
Symptoms:
Increased work of breathing
Oxygen requirement
Growth failure
Can result in pulmonary hypertension and heart
failure
treatment:
Respiratory support – home oxygen therapy
Diuretics
Bronchodilators, inhaled steroids
Systemic steroids (though worsens neurodevelopmental
outcomes)
Maximize nutrition (often have high caloric needs)
Retinopathy of Prematurity
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Stress inhibits the growth of retinal blood vessels
When the growth recommences it can be excessive
and abnormal leading to scarring of the retina
The abnormal vessels may regress or progress to
cause retinal detachment and loss of vision
Eyes need to be examined until the retina are
completely vascularised
Treated with laser ablation if severe
Out patient follow-up after discharge from NICU
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Visual problems
•Preterm infants at higher risk for vision problems:
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•Decreased acuity 27%
•Strabismus 13-25%
•Astigmatism 11% (at 5 years old)
•Severe visual impairment or blindness
•1-2% 26-27 weeks
•4-8% <25 weeks
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Hearing
In a study reported by Wilson (2014)
6% of 6-year-olds born before 26 weeks’ gestation
were wearing hearing aids, and another 4% had mild
hearing loss
All infants who spend more than 48 hours in the NICU
receive additional newborn hearing screening.
Increased risk of problems depending on gestation,
level of intensive therapy and antibiotics used.
abnormal neurodevelopmental outcomes?
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•
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•
•
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Higher risk with increasing prematurity,
decreasing birth weight
Intra ventricular haemorrhage, particularly
grades III-IV
Shunted hydrocephalus
Periventricular leucomalasia or other brain
injury
Broncho pulmonary dysplasia, Retinopathy of
prematurity
Developmental Delays
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The rate at which preterm infants develop is
influenced not only by their gestation at birth but
also by medical concerns, brain injury, genetic
disorders, and congenital problems such as the
effects of substance misuse.
Studies have found that children born
prematurely are likely to be more than 1.5 SD
below the mean or 25% below chronologic age
in one or more of the following areas:
physical, cognitive, communication, social or
emotional, or adaptive development (Wilson
2014)
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The ASQ developmental questionnaire
should be used according to the corrected
gestation up to 24 months of chronological
age, making a note of the number of weeks
premature.
i.e the 22 month ASQ is the last one that
allows for correction for prematurity
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Cerebral Palsy
Disorder of movement or posture as a result of
non-progressive injury in the developing brain
While all premature babies are at risk, those with PVL and
higher grade IVH (III-IV) are at highest risk.
•Early in infancy they may be hypotonic
•Delayed motor milestones
•May have asymmetric reaching at 4-6 months
•Posturing, spasticity, clonus develops
•Diagnosis often reached between 1-2 years, sometimes later
Attachment and bonding
separation of mother and baby at birth– no opportunity for skin to skin initially
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barriers – physical and psychological
physical appearance
loss of parental role
perinatal mental health PTSD
vulnerable child syndrome
Pierrehumbert et al 2003
Stern et al 2005
Allen et al 2004
Teti 2005
 Vulnerable parents
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Parents’
emotional
support
(Allen et al (2004)
 Post traumatic stress
(Pierrehumbert et al 2003)
 Post-natal depression
(Brugha 2010)
 Bereavement
 Peer support
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Hope Children’s Centre, Hanley
Last Friday in every month
12.30 – 2.30pm
Facebook page
Website and forum
any questions?
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Evaluation forms
Thank you for
coming
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references
Allen E, Manuel J, Legault M, Naughton M, Pivor C, O’Shea T (2004)
Perception of child vulnerability among mothers of former premature
infants. Paediatrics 113 (2) pp267-273
American Academy of Paediatrics, Committee on the fetus and
Newborn (2008) Hospital Discharge of the High Risk Neonate: Policy
Statement. Paediatrics 122(5) pp 1119-26
Blair P, Sidebottom P, Berry J, Evans M, Fleming P. (2006) Major
epidemiological changes in sudden infant death syndrome: a 20 year
population-based study in the UK. The Lancet 367 (131) p3666
Bliss(2010): The Chance of a Lifetime: sixth annual report. London.
Bliss. @www.bliss.org.uk
Brugha T, (2010) effectiveness of postnatal depression support from
Health Visitors. Community practitioner Oct p40
Clapp D (2006) Developmental Regulation of the immune System.
seminars in perinatology 30 (6) pp 69-72
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Crawford D (2010) Sudden Unexpected deaths in infancy: part 1 The
phenomenon of Sudden and unexplained infant Death. Journal of
neonatal nursing 16 pp104-110
Department of Health/ Department for Children, Schools and Families
(2009a) Healthy child programme: pregnancy and the first five years.
London DH
Department of Health/Department for Children, Schools and
Families(2009b) Toolkit for High Quality neonatal services. Available [on
line] at http://www.dcsf.gov.uk
Department for Children Schools and families (2013) Working together to
safeguard children. DH/DCSF TSO
Discenza D (2009) Parents’ Top Ten Worries at Discharge. Neonatal
Network 28 (3) pp202-3
Foundation for the study of infant Deaths (2009) Evidence for the ‘reduce
the risk of cot death’ advice. FSID available [on line] at www.fsid.org.uk
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Green, M, and Solnit A. (1964) Reactions to the threatened loss of a child:
a Vulnerable Child Syndrome. Pediatrics 34 pp58-66
Howell and Graham (2011) Parents Experiences of Neonatal Care. Picker
institute. Europe
McMullen S, Lipke B., LeMura C, (2008) Sudden Infant Death Syndrome
Prevention: A Model Programme for the Neonatal Unit. Neonatal Network
28 (1) pp7-12
Pierrehumbert B, Nicole A, Muller-Nix C, Forcada_Geux M, Ansermet F (2003)
Parental post traumatic reactions after premature birth: implications for eating
and sleeping problems in the infant. Archives of diseases of childhood, fetalNeonatal ed. 88 pp 400-4
POPPY (Parents Of Premature Infants) project (2009) Family -Centred Care In
Neonatal units. NCT London
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Stern M, Karraker M, McIntosh B, Moritzen S, Olexa M (2005)
Prematurity stereotyping and mother’s interactions with their premature infants
during the first year. Journal of Paediatric psychology. 31 (6) 597-607
Teti D (2005) Parental perceptions of infant vulnerability in a preterm sample:
prediction from maternal adaptation to parenthood during the neonatal period.
Journal of Developmental and behavioural paediatrics. 26 (4) pp 283-293
Walston F, Dixon, V. et al. (2011) Bridging the gap: A survey of neonatal
community care provision in England. Journal of Neonatal Nursing 17 pp69-78/
West Midlands Perinatal Institute (2011) Perinatal mortality, social deprivation
and community midwifery 2008-9. WMPI [on line] available at www.pi.nhs.uk
Wilson J (2014) Complications of prematurity . Available [on line] at
www.ohsu.edu/xd/occyshn/training-education