Lecture on family-based neonatal care 11 April 2017, held at the 17th Annual Saudi Neonatology Society Conference, in Riyadh, Saudi Arabia,

1. Family-based Neonatal Care
STEFAN JOHANSSON, MD PhD
Sachs Children’s Hospital
Karolinska institutet
Stockholm, Sweden

2. ”Families are the most central and
enduring influence in children's lives”
Shor. AAP Task Force on the Family
Pediatrics 2003;111:1541

3. Framework
”…planning, delivery, and evaluation of
health care… grounded in mutually
beneficial partnerships…”
Institute for Patient- and Family-Centered Care
www.ipfcc.org

4. Research and recommendations
www.poppy-project.org.uk

6. Becoming a parent
• Life-changing event
• Preconceptions
• Expectations
• Demands
• Almost all parents are unaware that
~10% of newborns need neonatal care

7. Becoming a NICU-parent
• Unprepared
• Loss of control
• Feeling guilty
• Afraid
• Worry about future

8. http://samvickery.com/inside-the-barbaric-world-of-a-neonatal-unit/

9. NICU-parents wants to…
• be informed
• be included in the care
• protect the infant
• be close with the infant
• be positively percieved by staff
Cleveland. J Obstet Gynecol Neonatal Nurs. 2008;37:666

10. How can we do?
• Emotional support
• Welcoming atmosphere
• Supportive unit policies
• Parent education
Cleveland. J Obstet Gynecol Neonatal Nurs. 2008;37:666

11. ”Family-based” practise
• Parents are a natural part of the team
• Parents are present as care-givers
• Parents participate in rounds
• Skin-to-skin
• Rooming in

12. NO SIZE FITS ALL
Your context matters

13. Do we need evidence for
family-based neonatal care
before we can adopt it?

15. ”Sounds good but show some data”
• Creating Opportunities for Parent Empowerment (COPE)
Melnyk. Pediatrics 2006;118:1414
• Stockholm Family-Centered Care Study
Örtenstrand. Pediatrics. 2010;125:e278
• Parental presence on NICU bedside rounds
Abdel-Latif. Arch Dis Child FN Ed 2015;100:F203
• Family Nurture Intervention in the NICU
Welsh. J Child Psychol Psychiatry. 2015;56:1202
• Parent-Administered Physical Therapy
Ustad. Pediatrics. 2016;138(2).pii: e20160271

16. Creating Opportunities for Parent
Empowerment (COPE)
• 260 families with preterm infants, they
either learned about:
– infant behaviour and how to parent it
– hospital services and organisation
• Families in the empowered group had
– lower depression and anxiety scores
– 4 days shorter hospital stay (35 vs 39 days)
Melnyk. Pediatrics 2006;118:1414

17. Stockholm Family-Centered Care Study
• 366 families with preterm infants randomized
to be roomed-in or staying at home
• Family-care families had
– less anxiety at discharge and after 3 months
– 5 days shorter hospital stay (27 vs 32 days)
Örtenstrand. Pediatrics. 2010;125:e278

18. Parental presence on NICU rounds
• 63 parents participating or non-participating
in bedside rounds (cross-over randomization)
• 95% of parents and 90% of staff:
”parents should be allowed to attend rounds”
• Focus group interviews revealed two themes
– communication
– philosophy
Abdel-Latif. Arch Dis Child FN Ed 2015;100:F203

19. Family Nurture Intervention in the NICU
• Parents were randomized to ”calming
interactions” with the preterm infant (scent
cloths, touch, vocal soothing, skin-to-skin)
• At 18 months, the ”nurtured” infants had
– higher Bayley scores
– fewer attention problems on CBCL
– higher scores on M-CHAT
Welsh. J Child Psychol Psychiatry. 2015;56:1202

20. Parent-Administered Physical Therapy
• 153 very preterm infants
• 74 parents trained by physiotherapist to give
10 minute sessions, twice a day, over 3 weeks
• Motor performance at 37 weeks were judged
higher in the intervention group
Ustad. Pediatrics. 2016;138(2).pii: e20160271

21. What does the data tell?
• Up-side
– No ”side-effects”
– Consistent associations
• Down-side
– Small studies
– Bias (non-blinding)
– Long-term results?
• But… is ”non-family-based” care acceptable?

22. The journey in Stockholm
• Staff engagement
• Ward organisation
• Strategies and guidelines
• Handling of breast milk
• Adopting a mindset of educating & coaching
• Implementation started 15 years ago and
is still a work-in-progress

23. How we work
• Non-separation
• Early skin-to-skin
• Both parents engaged
• Rounds with parents
• Family rooms
• Home-care

24. Do rounds with parents!
• improves empowerment
• increases transparancy
• improves decision-making
• improves planning
• is time-saving

25. Personal reflections
• Better professional relationships
• Most people are not like us
• Communicate your expectations
• Hygiene guidelines are essential
• Visiting policies for relatives are needed
• While parents are part of the team…
you have the medical responsibilities

26. Parents as medical intervention
Parental care and the emerging
relationship with parents may
be crucial for the development
of the newborn infant.