-
Interdisciplinary Recommendations for the Psychosocial Support
of NICU ParentsGuest Editors
Sue L. Hall, MD, MSW, FAAP and Michael T. Hynan, PhD
www.nature.com/jpVolume 35 Supplement 1 December 2015
The Offi cial Journal of the Section on Perinatal Pediatrics,
American Academy of Pediatrics Offi cial Publication of the
National Perinatal Association
-
Interdisciplinary Recommendations for thePsychosocial Support of
NICU Parents
Guest Editors:Sue L. Hall, MD, MSW, FAAP and Michael T. Hynan,
PhD
A workgroup of multidisciplinary professional organizations and
neonatal intensive care unit (NICU) parents was convened bythe
National Perinatal Association. Six committees (family-centered
developmental care, peer-to-peer support, mental
healthprofessionals in the NICU, palliative care and bereavement,
follow-up support and staff education and support) worked to
producethe recommendations found in this supplemental issue. NICU
parents contributed to the work of each committee. The
workgroupconsisted of over 50 members representing 22 academic
institutions, 28 professional groups and 8 parent groups.
Manyparticipants met at a summit held on Oct. 15, 2014 in St.
Louis, MO. The recommendations were subsequently reviewed
bymultiple organizations. The introduction lists the organizations
supporting the recommendations.
Sponsorship Statement: This work, and the meeting on which it
was based, were supported by sponsorships from the WellnessNetwork,
Prolacta Bioscience, Division of Neonatology at Loma Linda
University School of Medicine, Brenau University, NICUParent
Support at Mercy Hospital in St. Louis, MO, Hand to Hold Preemie
Parent Alliance, Zoe Rose Memorial Foundation, theRosemary Kennedy
Trust and Eden’s Garden. Dr. Sue Hall has a consulting agreement
with the Wellness Network, but thisorganization had no input or
editing rights to the content included in the guidelines.
-
Editor-in-ChiefEDWARD E LAWSON, MD
Johns Hopkins Hospital
Baltimore, Maryland
Editor, EmeritusGILBERT I MARTIN, MDWest Covina, California
Associate Editors
Maternal-Fetal MedicineYVONNE CHENG, MD, PhDSacramento,
California
Neonatal MedicinePHILIP V GORDON, MD, PhDPensacola, Florida
JATINDER BHATIA, MDAugusta, Georgia
JANE E MCGOWAN, MDPhiladelphia, Pennsylvania
InternationalFRANCIS MIMOUNI, MDJerusalem, Israel
ARUN PRAMANIK, MDShreveport, Louisiana
Quality MattersSTEPHEN A PEARLMAN, MD, MSHQSNewark, Delaware
SupplementsJATINDER BHATIA, MDAugusta, Georgia
Editorial Board
DAVID H ADAMKIN, MDLouisville, Kentucky
KEITH BARRINGTONMontreal, QC, Canada
MORAYE BEAR, MA, MSWoodland Hills, California
VINEET BHANDARI, MD, DMPhiladelphia, PA
LUC BRION, MDDallas, Texas
ANITA J CATLIN, DNSC, FNP, FAANPope Valley, California
AARON B CAUGHEY, MD, MPP, MPH, PhDPortland, Oregon
IRA CHASNOFF, MDChicago, Illinois
GARY DARMSTADT, MD, MSStanford, California
ARTHUR I EIDELMAN, MDJerusalem, Israel
YASSER EL-SAYED, MDStanford, California
WILLIAM A ENGLE, MDIndianapolis, Indiana
JANUSZ GADZINOWSKI, MD, PhDPoznan, Poland
MITCHELL GOLDSTEIN, MDWest Covina, California
SERGIO G GOLOMBEK, MD, MPHValhalla, New York
JOHN HARTLINE, MDItasca, Illinois
DIANE HOLDITCH-DAVIS, PhDDurham, North Carolina
THOMAS C HULSEY, MSPH, ScDMorgantown, West Virginia
MICHAEL T HYNAN, PhDMilwaukee, Wisconsin
MARTIN KESZLER, MDProvidence, Rhode Island
ROBERT KOPOTIC, MSN, RN, RRTJamul, California
MATTHEW M LAUGHON, MD, MPHChapel Hill, North Carolina
JOHN PARIS, SJChestnut Hill, Massachusetts
DE-ANN M PILLERS, MD, PhDMadison, Wisconsin
JEFFREY J POMERANCE, MD, MPHGlendora, California
JOANN PRAUSE, PhDLaguna Hills, California
WILLIAM E ROBERTS, MDJackson, Mississippi
WARREN ROSENFELD, MDMineola, New York
RITA M RYAN, MDCharleston, South Carolina
OLA DIDRIK SAUGSTAD, MD, PhDOslo, Norway
KRIS C SEKAR, MDOklahoma City, Oklahoma
JAYANT P SHENAI, MDNashville, Tennessee
MICHAEL E SPEER, MDHouston, Texas
JOSEPH SPINNATO, MDTampa, Florida
DAVID K STEVENSON, MDStanford, California
JONATHAN R SWANSON, MD, MScCharlottesville, Virginia
DHARMAPURI VIDYASAGAR, MDChicago, Illinois
MICHELE C WALSH, MDCleveland, Ohio
-
Volume 35 Number S1 December 2015
Contents
INTRODUCTION
Psychosocial program standards for NICU parentsS1MT Hynan and SL
Hall OPEN
REVIEWS
Recommendations for involving the family in developmental care
of the NICU babyS5JW Craig, C Glick, R Phillips, SL Hall, J Smith
and J Browne OPEN
Recommendations for peer-to-peer support for NICU parentsS9SL
Hall, DJ Ryan, J Beatty and L Grubbs OPEN
Recommendations for mental health professionals in the NICUS14MT
Hynan, Z Steinberg, L Baker, R Cicco, PA Geller, S Lassen, C
Milford, KO Mounts, C Patterson, S Saxton, L Segre and A Stuebe
OPEN
Recommendations for palliative and bereavement care in the NICU:
a family-centered integrative approachS19C Kenner, J Press and D
Ryan OPEN
NICU discharge planning and beyond: recommendations for parent
psychosocial supportS24IB Purdy, JW Craig and P Zeanah OPEN
Recommendations for enhancing psychosocial support of NICU
parents through staff education and supportS29SL Hall, J Cross, NW
Selix, C Patterson, L Segre, R Chuffo-Siewert, PA Geller and ML
Martin OPEN
THE OFFICIAL JOURNAL OF THE SECTION ON PERINATAL
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OPEN
INTRODUCTION
Psychosocial program standards for NICU parentsMT Hynan1 and SL
Hall2
This article provides a rationale for and brief description of
the process of developing recommendations for program standardsfor
psychosocial support of parents with babies in the neonatal
intensive care unit (NICU). A multidisciplinary workgroup
ofprofessional organizations and NICU parents was convened by the
National Perinatal Association. Six interdisciplinary
committees(family-centered developmental care, peer-to-peer
support, mental health professionals in the NICU, palliative and
bereavementcare, follow-up support and staff education and support)
worked to produce the recommendations found in this
supplementalissue. NICU parents contributed to the work of each
committee.
Journal of Perinatology (2015) 35, S1–S4;
doi:10.1038/jp.2015.141
BACKGROUNDA neonatal intensive care unit (NICU) is akin to a
trauma center forall participants. Fragile babies struggle to
survive and grow.Parents and families worry constantly while trying
to maintainoptimism and hope. Staff attempt to avoid burnout while
bothencouraging distraught parents and acknowledging the times
ofpoor prognosis. Distress is the companion of everyone.Although
the title of this supplemental issue of Journal
of Perinatology involves psychosocial support for NICU
parents,the recommendations go beyond parents. The reader will
findnumerous studies documenting the NICU experience as
apotentially traumatic event;1 primarily to parents, but also
tobabies2 and staff.3,4 In the ideal NICU, psychosocial support
ofboth NICU parents and staff should be goals equal in importanceto
the health and development of babies.In January 2014, the National
Perinatal Association convened
a broad group of approximately 50 thought leaders
andstakeholders—physicians (both neonatology and
obstetrics),nurses, nurse practitioners, nurse midwives,
developmental carespecialists, psychologists, social workers,
public health experts,parent support group leaders and parents—to
developinterdisciplinary guidelines for psychosocial support
services forparents whose infants require care in NICUs. The
workgroupconsisted of representatives of 28 professional groups and
parentgroups. NICU parents were involved in each of the six
committees.The 50 work group members represented 22
academicinstitutions.The committees gathered research citations,
communicated by
e-mail and phone, and many members attended a summit on15
October 2014 in St Louis, MO, USA. On 1 May 2015,
therecommendations were sent to the organizations represented
byworkgroup membership (and other organizations) for review
andpotential support. The listing of a supporting organization in
thisissue does not imply that the organization agreed with each
andevery recommendation. Support entailed agreement with theoverall
tenor of the recommendations and does not indicateofficial guidance
from the supporting organization. Wheneverpossible the
recommendations follow from the research citations.
Some recommendations have an evidence base that is modest.In
these cases, the workgroup has relied on consistent
personalexperiences that the recommendation is simply 'the right
thingto do'.The workgroup fully understands that some of these
recom-
mendations will be difficult to implement, especially in an
erawhen health-care organizations, governmental groups andinsurance
companies are struggling to accommodate to therealities of the
marketplace. The recommendations are a road mapfor how NICUs should
be transformed; and, in some cases,multiple suggestions are
provided for achieving a goal. Provisionof comprehensive family
support, which involves (a) family-centered developmental care by
the health-care staff, (b) activeparent-to-parent support within
the NICU and (c) ready availabilityof services provided by mental
health professionals, should be agoal for all NICUs. A recent
transformation for NICUs has been theconstruction of single bed
rooms.5 The research on single bedrooms has demonstrated mixed
effects on both mothers andbabies.6–8 One very interesting aspect
of the advantages of thesingle bed room is a recent study in one
hospital showing that thischange in the architecture did not lead
to a direct beneficial effectupon the baby, but rather the
beneficial effects were mediated byincreased maternal involvement.8
Many of the recommendationsof the workgroup focus on the
optimization of the mother/father/baby relationship to ensure that
families get the healthiest startpossible.Multiple guiding
principles can be found throughout these
recommendations. One is that comprehensive psychosocialsupport
requires interdisciplinary collaboration. Every disciplinehas a
role to play in interacting with each other for the maximumbenefit
of babies, parents and staff. A second guiding principleis
continuity of care. Whenever possible, psychosocial supportshould
begin during the antepartum period. This supportshould continue
through the NICU stay and into the post-NICUperiod.Another
principle is reflected in the recognition that there are
a variety of emotional responses to potentially
traumaticexperiences.1 Four primary trajectories of emotional
recovery
1Department of Psychology, University of Wisconsin-Milwaukee,
Milwaukee, WI, USA and 2Department of Neonatology, St John's
Regional Medical Center, Oxnard, CA, USA.Correspondence: Dr SL
Hall, Department of Neonatology, St John's Regional Medical Center,
1600 N. Rose Avenue, Oxnard, CA 93030, USA.E-mail:
[email protected] 30 August 2015; revised 27 September
2015; accepted 29 September 2015
Journal of Perinatology (2015) 35, S1–S4© 2015 Nature America,
Inc. All rights reserved 0743-8346/15
www.nature.com/jp
http://dx.doi.org/10.1038/jp.2015.141mailto:[email protected]://www.nature.com/jp
-
have been documented in the general trauma recovery
literature.1
Many of these trajectories have been found in researchon NICU
mothers.9,10 These trajectories are resilient, chronic,recovered
and delayed.1 Resilient refers to continuouslow-intensity symptoms
of emotional distress and adaptivepsychological functioning.
Chronic refers to high-intensitysymptoms and maladaptive
functioning for the duration of thecrisis. Recovered refers to
initial symptoms of moderate intensitythat decline over the course
of time. Delayed refers to initiallevels of symptoms of moderate
intensity that increase in intensityover time. Many readers will
have observed the differenttrajectories in NICU parents. The
emotional reactions of NICUparents should be monitored over time
and appropriate levels ofsupport offered.These trajectories of
recovery dovetail with a fourth principle,
layered levels of care as represented in the 'pediatric
psychosocialpreventative health' model of care.11 A 'universal'
level of careshould be available to all parents. This universal
care level is bestaddressed with family-centered developmental care
along withactive parent-to-parent support. A higher level of
'targeted' careshould be provided for families identified as being
at risk foremotional distress. Both professional and
paraprofessional levelsof 'targeted care' should be delivered by
NICU staff. 'Clinical' careis emotional care provided for NICU
parents with acute ordiagnosable conditions by mental health
professionals bothwithin the NICU and through outside
referrals.Clinical levels of care are clearly needed in the
NICU.12–15
Multiple research studies (using interviews or
questionnaires)have reported elevated symptoms of depression in 39
to 63% ofNICU mothers during the first postpartum year.14 Studies
ofpost-traumatic stress disorder report that 9 to 53% of
NICUmothers score above threshold on post-traumatic stress
disorderquestionnaires or interviews.9,10,14,15 The few studies of
NICUfathers also show elevations in depression and
post-traumaticstress disorder symptoms that are distinctly greater
than the1-year prevalence rate for the general population.14
Research hasalso shown the beneficial effects of psychosocial
supportprograms (ranging from parent support groups to
systematicpsychotherapy in the NICU) on the well-being of NICU
parents.These reports are elaborated in the following articles in
thisjournal issue.Although the need for clinical care has clearly
been
demonstrated, many readers will recognize that much of
thedistress NICU parents feel can be lessened by the
health-careteam, using sound principles of communication. These
principalsinclude: (a) acknowledging, (and, when necessary)
clarifying orreinterpreting parents’ concerns; (b) fully sharing
medical informa-tion on a regular basis and (c) empathetically
delivering'bad news'. Clarity and continuity of communication
betweenparents and the health-care team is a key, as is the
managementof transition points and handoffs among caregivers.
Psychother-apy researchers have long recognized that therapeutic
benefitscome not only from the specific techniques of therapy, but
alsofrom the general components of communication found in
caringrelationships (for example, compassion, empathy,
understandingand acceptance).16
Some of the recommendations involve giving guidance to
NICUparents about the risk for future psychological distress.
Suchguidance should not imply that all parents are at risk
forpsychopathology.1
Rather, psychosocial programs should both normalize the levelsof
distress felt by almost all NICU parents and offer targeted
andclinical levels of care for parents at risk. NICU mental
healthprofessionals should take into account multiple risk factors
in
counseling parents about their future possibilities.14 The
recom-mendations in this issue do not indicate an exclusive course
ofaction. Clinical judgment should be used in all
communicationswith parents.Readers may also wish to access an
Internet-based
tool kit that provides useful resources for both parents
andprofessionals. Parents will find resources to help them
getthrough a NICU stay, as well as how to start and maintain
aparent support group; professionals will find more information
onperinatal mental health issues and their
management(www.support4NICUparents.org).
CONFLICT OF INTERESTSL Hall has a consulting agreement with the
Wellness Network, but this organizationhad no input or editing
rights to the content included in the guidelines. Theremaining
author declares no conflict of interest.
ACKNOWLEDGEMENTSWe wish to acknowledge the support of the Board
of Directors of the NationalPerinatal Association, especially
past-president Bernadette Hoppe who recom-mended the formation of
the work group and summit. This supplemental issuehas been
supported by grants and contributions from: the Wellness
Network,Prolacta Bioscience, Division of Neonatology at Loma Linda
University School ofMedicine, Brenau University, NICU Parent
Support at Mercy Hospital in St Louis, MO,Hand to Hold, Preemie
Parent Alliance, Zoe Rose Memorial Foundation, the RosemaryKennedy
Trust and Eden’s Garden.
REFERENCES1 Bonanno GA, Westphal M, Anthony D, Mancini AD.
Resilience to loss and
potential trauma. Ann Rev Clin Psychol 2011; 7: 511–535.2
Coughlin M. Transformative Nursing in the NICU: Trauma-Informed
Age-Appropriate
Care. Springer Publishing: New York, 2014.3 Braithwaite M. Nurse
burnout and stress in the NICU. Adv Neonatal Care 2008; 8
(6): 343–347.4 Czaja AS, Moss M, Mealer M. Symptoms of
post-traumatic stress disorder among
pediatric acute care nurses. J Pediatr Nurs 2012; 27(4):
357–365.5 Harris DD, Shepley MM, White RD, Kolberg KJS, Harrell JW.
The impact of single
family room design on patients and caregivers: executive
summary. J Perinatol2006; 26: S38–S48.
6 Pineda RG, Rogers C, Duncan M, Stransky K, Neil J, Inder T.
The singlepatient room in the NICU: maternal and family effects. J
Perinatol 2012; 32(7):545–551.
7 Pineda RG, Neil J, Dierker D, Smyser CD, Wallendorf M,
Kidokoro H et al. Altera-tions in brain structure and
neurodevelopmental outcome in preterm infantshospitalized in
different neonatal intensive care unit environments. J Pediatr
2014;164(1): 52–60.
8 Lester BM, Hawes K, Abar B, Sulllivan M, Miller R, Bigsby R et
al. Single-family roomcare and neurobehavioral and medical outcomes
in preterm infants. Pediatrics2014; 134(4): 754–760.
9 Holditch-Davis D, Miles MS, Weaver MA, Black B, Beeber L,
Thoyre S et al. Patternsof distress in African-American mothers of
preterm infants. J Dev Behav Pediatr2009; 30(3): 193–205.
10 Kim WJ, Lee E, Namkoong K, Park ES, Rha DW. Progress of PTSD
symptomsfollowing birth: a prospective study in mothers of
high-risk infants. J Perinatol2015; 35 (8): 575–579.
11 Kazak AE. Pediatric psychosocial preventative health model
(PPPHM): research,practice, and collaboration in pediatric family
system medicine. Fam SystemsHealth 2006; 24: 381–395.
12 Friedman SH, Kessler A, Yang SN, Parsons S, Friedman H,
Martin RJ. Deliveringperinatal psychiatric services in the neonatal
intensive care unit. Acta Paaediatr2013; 102: e392–e397.
13 Penny KA, Freidman SH, Halstead GM. Psychiatric support for
mothers in theneonatal intensive care unit. J Perinatol 2015;
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14 Hynan MT, Mounts KO, Vanderbilt DL. Screening parents of
high-risk infants foremotional distress: rationale and
recommendations. J Perinatol 2013; 33(10):748–753.
Psychosocial support for NICU parentsMT Hynan and SL Hall
S2
Journal of Perinatology (2015), S1 – S4 © 2015 Nature America,
Inc.
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15 Greene M, Rossman B, Patra K, Kratovil A, Janes J, Meier P.
Depression, anxiety,and perinatal-specific posttraumatic distress
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16 Lambert MJ. The efficacy and effectiveness of psychotherapy.
In: Lambert MJ (ed).Bergin & Garfield's Handbook of
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pp 169–218.
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APPENDIX A: WORKGROUP ON PSYCHOSOCIAL SUPPORT OFNICU
PARENTSCo-ChairsSue L Hall, MD, MSW, FAAP, Neonatologist, St John’s
Regional
Medical Center, Oxnard, CA, USA.Michael T Hynan, PhD, Emeritus
Professor of Clinical Psychology,
University of Wisconsin-Milwaukee, Milwaukee, WI,
USA.Participants in the Workgroup
Lisa Baker, PhD, LCSW, PIP, Associate Professor of Social
Work,University of Alabama, Birmingham, AL, USA.Amy Baughcum, PhD,
Pediatric Psychologist, Assistant Clinical
Professor of Pediatrics, Ohio State University School of
Medicine,Nationwide Children’s Hospital, Columbus, OH, USA.Jennifer
Beatty, MSW, Program Director, Hand to Hold, Austin,
TX, USA.Joy Browne, PhD, PCNS-BC, IMH-E(IV), Clinical Professor
of
Pediatrics and Psychiatry, University of Colorado Anschutz
MedicalCampus, and The Children’s Hospital, Aurora, CO, USA.Tawna
Burton, March of Dimes Family Support Program
Coordinator, Intermountain Medical Center, Salt Lake City,UT,
USA.Rebecca Chuffo-Siewert, DNP, ARNP, NNP-BC, FAANP, Neonatal
Nurse Practitioner, Department of Neonatology, University of
IowaChildren's Hospital, College of Nursing, University of Iowa,
IowaCity, IA, USA.Robert Cicco, MD, Neonatologist and Associate
Director of NICU,
West Penn Hospital, Pittsburgh, PA, USA.Jenene Woods Craig, PhD,
MBA, OTR/L, Assistant Professor of
Occupational Therapy, Brenau University, College of
HealthSciences, Gainesville, GA, USA.JaNeen Cross, PhD, MSW, MBA,
LCSW, ACSW, Assistant Professor
of Social Work, Widener University, Chester, PA, USA.Barbara
DeLoian, PhD, RN, CPNP, Pediatric Nurse Practitioner,
Special Care/Special Kids, Castle Pines, CO, USA.Jaime DeMott,
Parent Volunteer, Graham’s Foundation,
Charlotte, MI, USA.Pamela A Geller, PhD, Department of
Psychology, Department
of Obstetrics and Gynecology, Drexel University College
ofMedicine, Associate Professor of Psychology,
Obstetrics/Gynecol-ogy and Public Health, Drexel University,
Philadelphia, PA, USA.Cris Glick, MD, Neonatologist, Mississippi
Lactation Services,
Jackson, MS, USA.Andrea Schwartz Goodman, MSW, MPH, Formerly
Maternal and
Child Health Director, National Healthy Mothers, Healthy
BabiesCoalition, Washington, DC, USA.Erika Goyer, Education
Director, Hand to Hold, Austin, TX, USA.Lisa Grubbs, Founder and
President, NICU Helping Hands, Fort
Worth, TX, USA.Nick Hall, Founder and President, Graham’s
Foundation,
Waterville, OH, USA.Becky Hatfield, Parent Support Specialist,
Parent to Parent
Program, University of Utah Hospital, Salt Lake City, UT,
USA.Amanda Hedin, Founder, Eden’s Garden, Blaine, MN, USA.Pec
Indman, EdD, MFT, Certified Trainer for Postpartum Support
International, San Jose, CA, USA.Carole Kenner, PhD, RNC-NIC,
NNP, FAAN, Dean and Professor of
the School of Nursing, Health and Exercise Science, The College
ofNew Jersey, Ewing, NJ, USA.
Stephen Lassen, PhD, Associate Professor of
Pediatrics,University of Kansas Medical Center, Kansas City, KS,
USA.Kristy Love, Director of Operations, National Perinatal
Associa-
tion, St Louis, MO, USA.Sue Ludwig, BS, OTR/L, Neonatal
Occupational Therapist,
University of Cincinnati Medical Center, Cincinnati, OH,
USA.Laura B. Martin, MMEd, Director of Parent Communication and
Engagement, Graham's Foundation, Waterville, OH, USA.MaryLou
Martin, MSN, RNC, Clinical Nurse Specialist/NurseEdu-
cator, McLeod Regional Medical Center, Florence, SC, USA.Heather
McKinnis, Director, Preemie Parent Mentor Program,
Graham's Foundation, Waterville, OH, USA.Cheryl Milford, EdS,
Psychologist in Private Practice, Cheryl
Milford Consulting, Huntington Beach, CA, USA.Kyle Mounts, MD,
Wisconsin Association for Perinatal
Care/Perinatal Foundation, Milwaukee, WI, USA.Raja Nandyal, MD,
Associate Professor of Pediatrics, The
Children’s Hospital at Oklahoma University Health Sciences
Center,Oklahoma City, OK, USA.Chavis A Patterson, PhD, Director of
Psychosocial Services,
Division of Neonatology, The Children’s Hospital of
Philadelphia,Assistant Professor of Clinical Psychology in
Psychiatry, Depart-ment of Psychiatry, Perelman School of Medicine
at the Universityof Pennsylvania, Philadelphia, PA, USA.Raylene
Phillips, MD, Assistant Professor of Pediatrics,
Division of Neonatology, Loma Linda University, Loma Linda,CA,
USA.Carrie Piazza-Waggoner, PhD, Associate Professor of
Behavioral
Medicine and Clinical Psychology, University of
Cincinnati,Cincinnati Children’s Hospital Medical Center,
Cincinnati, OH, USA.Rachel Ponzek, BSN, RN, Neonatal Intensive Care
Unit, Children’s
Hospital of Philadelphia, Philadelphia, PA, USA.Laney Poye,
Director of Community Relations, Preeclampsia
Foundation, Melbourne, FL, USA.Janet Press, RNC, BSN, CT,
Perinatal Bereavement Services
Coordinator, Crouse Hospital, Syracuse, NY, USA.Isabel Purdy,
PhD, RN, CPNP, NNP, CNS, Associate Clinical
Professor of Pediatrics, Division of Neonatology, David
GeffenSchool of Medicine at UCLA, Los Angeles, CA, USA.Lisa Rafel,
Musician, singer, composer, Founder of Resonant
Sounds, Oakland, CA, USA.Donna Ryan, DNP, RN, Assistant
Professor in Nurse Education
Program, Elmira College, Elmira, NY, USA.Anne Santa-Donato, MSN,
RNC, Director, Obstetric Programs,
Association of Women's Health, Obstetric and Neonatal
Nurses,Washington, DC, USA.Sage Saxton, PsyD, Clinical Associate
Professor of Pediatrics,
Child Development & Rehabilitation Center, Oregon Health
&Science University, Portland, OR, USA.Jennifer Schum, RN, CPN,
Regional Director of NICU Family
Support-West Region, March of Dimes, Dallas, TX, USA.Lisa Segre,
PhD, Associate Professor of Nursing, College of
Nursing and Department of Psychological and Brain
Sciences,University of Iowa, Iowa City, IA, USA.Nancy Green Selix,
CNM, DNP, Assistant Professor of Nursing,
School of Nursing and Health Professions, University ofSan
Francisco, San Francisco, CA, USA.
Psychosocial support for NICU parentsMT Hynan and SL Hall
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© 2015 Nature America, Inc. Journal of Perinatology (2015), S1 –
S4
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Joan Smith, PhD, RN, NNP-BC, Associate Professor, GoldfarbSchool
of Nursing at Barnes-Jewish College, Advanced PracticeClinical
Scientist, St Louis Children’s Hospital, St Louis, MO, USA.Keira
Sorrells, Founder and Executive Director, Zoe Rose Memorial
Foundation and Preemie Parent Alliance, Jackson, MS, USA.Sharon
Sprinkle, RN, MBA, MHA, Nurse Consultant Manager,
Nurse-Family Partnership, Denver, CO, USA.Zina Steinberg, EdD,
Assistant Clinical Professor of Medical
Psychology, Columbia University, New York Presbyterian
MorganStanley Children’s Hospital, New York, NY, USA.Alison Stuebe,
MD, Assistant Professor of Obstetrics and
Gynecology, Division of Maternal Fetal Medicine, University
ofNorth Carolina, Chapel Hill, NC, USA.Sarah Verbiest, DrPH, MSW,
MPH, Executive Director, University
of North Carolina Center for Maternal and Infant Health,
ChapelHill, NC, USA.Eleanor Yost, MBA-HA, MSN, PNP, Director of
Program Innova-
tions, Nurse Family Partnership, Denver, CO, USA.Paula Zeanah,
PhD, MSN, Picard-Nursing Collaborative Chair,
Director of Research, Cecil Picard Center for Child
Developmentand College of Nursing and Allied Sciences, University
ofLouisiana, Lafayette, LA, USA.Professional Organizations that
Participated in theWorkgroupAcademy of Neonatal NursingAssociation
of Women’s Health, Obstetric and Neonatal NursesCouncil of
International Neonatal NursesHealthy Mothers, Healthy Babies
Coalition, National Premature
Infant Health CoalitionMarch of DimesNational Association of
Neonatal NursesNational Association of Neonatal TherapistsNational
Association of Pediatric Nurse PractitionersNational Association of
Perinatal Social WorkersNational Perinatal AssociationNurse Family
PartnershipOklahoma Infant AlliancePreeclampsia FoundationSpecial
Care/Special KidsTranscultural Nursing Association
Parent Support Organizations that Participated in
theWorkgroupEden’s GardenGraham’s FoundationHand to HoldNICU
Helping Hands
NICU Parent Support (NICUPS) at Mercy Hospital in St LouisParent
to Parent of Salt Lake CityPreemie Parent AllianceZoe Rose Memorial
Foundation
APPENDIX B: ORGANIZATIONS THAT SUPPORT THERECOMMENDATIONSThe
following is a list of organizations that agreed tosupport the
spirit and general content of the InterdisciplinaryRecommendations
for Psychosocial Support of NICU Parents, withthe understanding
that their support does not imply agreementwith each and every
recommendation. The Recommendationsshould not be considered
official guidance from any of thesupporting
organizations.Professional Organizations
Academy of Neonatal NursingAmerican College of
Nurse-MidwivesCouncil of International Neonatal NursesMarcé Society
for Perinatal Mental HealthNational Association of Neonatal
NursesNational Association of Pediatric Nurse PractitionersNational
Association of Perinatal Social WorkersNational Association of
Neonatal TherapistsNational Perinatal AssociationNurse Family
PartnershipSociety for Maternal Fetal MedicineTranscultural Nursing
SocietyUniversity of North Carolina at Chapel Hill Center for
Maternaland Infant Health
Family Support OrganizationsCanadian Foundation for Premature
BabiesEden’s GardenEuropean Foundation for the Care of Newborn
InfantsGraham’s FoundationHand to HoldHope for HIENICU Helping
HandsPostpartum Support InternationalPreeclampsia FoundationPreemie
Parent AlliancePreemie World, LLCSt John’s Mercy NICU Parent
SupportThe Tiny Miracles FoundationZoe Rose Memorial Foundation
Psychosocial support for NICU parentsMT Hynan and SL Hall
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OPEN
REVIEW
Recommendations for involving the family in developmentalcare of
the NICU babyJW Craig1, C Glick2, R Phillips3, SL Hall4, J Smith5
and J Browne6
Family involvement is a key to realize the potential for
long-lasting positive effects on physical, cognitive and
psychosocialdevelopment of all babies, including those in the
neonatal intensive care unit (NICU). Family-centered developmental
care (FCDC)recognizes the family as vital members of the NICU
health-care team. As such, families are integrated into
decision-making processesand are collaborators in their baby’s
care. Through standardized use of FCDC principles in the NICU, a
foundation is constructed toenhance the family’s lifelong
relationship with their child and optimize development of the baby.
Recommendations are made forsupporting parental roles as caregivers
of their babies in the NICU, supporting NICU staff participation in
FCDC and creating NICUpolicies that support this type of care.
These recommendations are designed to meet the basic human needs of
all babies, the specialneeds of hospitalized babies and the needs
of families who are coping with the crisis of having a baby in the
NICU.
Journal of Perinatology (2015) 35, S5–S8;
doi:10.1038/jp.2015.142
BACKGROUNDThe provision of family-centered care has been
endorsed by theAmerican Academy of Pediatrics and many other
health-careorganizations.1 However, gaps have been demonstrated
betweenthe goals of family-centered care and its actual
practice.2–4
Family-centered developmental care (FCDC) takes
family-centeredcare one step further by involving the family as an
essentialcontributor to the provision of individualized,
developmentallysupportive care of their baby.5 FCDC provides the
strongsupportive foundation families in the neonatal intensive care
unit(NICU) need to optimize the lifelong relationship
betweenthemselves and their babies, as well as to optimize the
baby’sphysical, cognitive and psychosocial development.
Embracingfamilies as decision-making partners and collaborators in
theirbaby’s care has long been recognized as an optimal way of
caringfor babies in the NICU. A primary goal of FCDC is to minimize
thelasting negative effects that a baby’s illness may have on
parent–baby interactions.6 Reaching this goal can be
accomplishedthrough identification of individual infant/family
vulnerabilitiesand strengths7 and then finding ways to address
these charac-teristics in the antepartum period, continuing through
NICUadmission, and on to NICU discharge and the transition
home.Fully implementing FCDC requires a global change in
culture8
and in the behavior of the many professional disciplines
workingwithin the NICU, and FCDC demands an expansion of the
historicrole of the NICU health-care team.9 One way for NICU teams
todevelop and expand their FCDC practices is through
theimplementation of quality improvement initiatives.2 This
articlepresents key areas that these initiatives should address:
(a) parentsupport, (b) staff support and (c) NICU policies.The
following recommendations for developmentally suppor-
tive care are critical components of standard medical
careproviding for the basic human needs of all babies. The
recommendations address the special needs of babies who
areadmitted to the NICU as well as the needs of families who
arecoping with the crisis of having a baby in the NICU.
SUPPORTING PARENTS’ ROLES AS CAREGIVERS OF THEIRBABIES IN THE
NICUHistorically, the model of care for the NICU baby included
almostcomplete separation from the mother and the family, with the
babyenveloped in technology and cared for by highly
trainedpersonnel.9,10 After the baby was ‘cured and ready for
discharge’the family was notified to take their baby to home. While
separationof babies from mothers has a profound negative effect on
thebaby’s physiologic stability, as well as psychosocial well-being
andbrain development, the current model of care for the
NICUacknowledges that the effects of a premature birth or
hospitaliza-tion of a sick newborn are not only experienced by
babies but alsoby parents and families. This separation is
especially true for verylow birth weight babies and their families,
as these babies spendsignificant time away from their parents and
are at high risk forlong-term developmental and behavioral
problems.11,12 Parents ofpremature babies often lack support and
opportunities to engagein parenting while in the NICU, leading to
frequent misperceptionsof their baby’s behavioral cues13 and even
labeling of their babiesas ‘difficult’.14 The separation of parents
from their baby in theNICU15 combined with parental mental health
issues such asdepression, post-traumatic stress disorder, anxiety
and other stress-related conditions can adversely affect the
parent–baby relationshipresulting in adverse outcomes for the
baby’s social and emotionaldevelopment,16,17 and behavioral18 and
cognitive functioning.19,20
This separation may render the preterm baby, especially one who
isvery low birth weight, to be at risk for abuse and
maltreatmentfollowing hospital discharge.17,21,22
1School of Occupational Therapy, Brenau University, Gainesville,
GA, USA; 2Mississippi Lactation Services, Jackson, MS, USA;
3Division of Neonatology, Department of Pediatrics,Loma Linda
University Children's Hospital, Loma Linda, CA, USA; 4Division of
Neonatology, St. John's Regional Medical Center, Oxnard, CA, USA;
5Goldfarb School of Nursing atBarnes-Jewish College, St Louis, MO,
USA and 6Departments of Pediatrics and Psychiatry, University of
Colorado Anschutz Medical Campus and The Children’s Hospital,
Aurora,CO, USA. Correspondence: Dr JW Craig, School of Occupational
Therapy, Brenau University, North Atlanta Campus, 3139 Campus
Drive, Suite 300, Norcross, GA 30071, USA.E-mail:
[email protected] 30 August 2015; revised 27 September
2015; accepted 29 September 2015
Journal of Perinatology (2015) 35, S5–S8© 2015 Nature America,
Inc. All rights reserved 0743-8346/15
www.nature.com/jp
http://dx.doi.org/10.1038/jp.2015.142mailto:[email protected]://www.nature.com/jp
-
Parents of premature and sick babies must developand maintain an
appropriate understanding of their babies’ needsin order to be
prepared for home caregiving.11,23 Studies byO’Brien et al.24 in
Canada and Ortenstrand et al.25 in Sweden, inwhich families were
fully integrated into the NICU team andactively provided much of
their babies’ care, showed manybenefits to both parents and babies.
Mothers had lower stressscores and felt more knowledgeable and
confident, while babieshad improved weight gain and a higher rate
of exclusivebreastfeeding at discharge in the O’Brien et al.24
trial. The lengthof stay was shorter for babies in the Ortenstrand
et al.25
trial. Phillips et al.26 found that supporting mothers in the
NICUto respond to their babies’ behavior in an effort to
supportattachment led to significantly higher rates of
breastfeeding at8 weeks after birth.26
Several studies have revealed a link between infant stress in
theNICU and the corresponding changes in brain architecture.
Smithet al.27 demonstrated that when neonates were exposed
toincreasing numbers of stressors in the NICU, the babies
hadregional alterations in brain structure and function, as
determinedby magnetic resonance imaging, as well as abnormalities
in motorbehavior on neurobehavioral examination. However, when
parentsof premature babies are shown how to recognize their
baby’sbehavioral, social and physical cues, parents facilitate
their baby’sdevelopmental and physical progress, further reflected
by changesin the brain’s structure. Milgrom et al.28 found that
when parentsparticipated in a 10-session training program to help
them reducetheir preterm babies’ stressful experiences, their
babies’ brainsshowed improved cerebral white matter
micro-structural develop-ment, again as determined by magnetic
resonance imaging. Inanother study, preterm babies who received 8
weeks of skin-to-skincontact with their mothers demonstrated
accelerated functionalbrain maturation as assessed by
electroencephalogram, whencompared with babies who did not receive
such contact.29
Further work by Milgrom et al.30 evaluated the impact of
anextended intervention using the enhanced Mother–InfantTransaction
Program, called PremieStart, on both mothers andtheir babies born
at o30 weeks gestation. The goals for motherswho participated in
this training were to recognize and minimizestress responses in
their babies. Mothers who participated werefound to be more
sensitive to their babies and were appropriatelyresponsive to the
identified stress behaviors. Their babiesdisplayed fewer stress
behaviors at term equivalent age andshowed more advanced
communication development at 6 monthscorrected age. This latter
finding gives promise that theintervention may provide an early
benefit to cognitive andpre-linguistic development. White-Traut et
al.31 demonstrated thatwhen mothers received information on how to
provide theirbabies with simple, developmentally appropriate
multi-sensorystimulation through the ‘Hospital to Home
Transition—OptimizingPremature Infant’s Environment’ program, their
babies had betterweight gain during the hospital stay and were less
likely to see ahealth-care provider for an illness in the 6-weeks
post-NICUdischarge.32 Parents also benefited when they were
supported toimprove interactions with their babies. Melnyk et al.13
found thatparents who participated in the ‘Creating Opportunities
for ParentEmpowerment’ program during their NICU stay reported
lessstress while in the NICU and less depression and anxiety at2
months’ corrected infant age than did mothers who did notreceive
the intervention. Babies of participating mothers also hada shorter
length of stay in the NICU.13
Taken together, these studies provide a strong basis
forinterventions that support parents in the parenting role and
guideparents in developmentally appropriate interactions with
theirpreterm and sick babies. These interventions have the
potential tolessen the adverse impact of environmental stressors to
which NICUbabies are exposed, ultimately lessening the chance of
poordevelopmental outcomes. In addition, positive benefits of
reduced
stress and improved parent mental health outcomes ultimately
canfurther improve parents’ relationships with their
babies.Recommendations for supporting parents’ roles as caregivers
of
their babies in the NICU:
1. Parents should be incorporated as full participatory,
essential,healing partners within the NICU caregiving team. As
partnerswithin the medical team, parents should:
(a) Assume the parental role through provision of hands-oncare
to their baby including early, frequent and prolongedskin-to-skin
contact as is medically appropriate, withcoaching, guidance and
support from the NICU staff;33
(b) Participate in both medical rounds and nursing shiftchange
reports;1,34
(c) Honor both Health Insurance Portability and
AccountabilityAct (HIPPA) and safety concerns while in the NICU;
and
(d) Have full access and input to both written and
electronicmedical records.
2. Parents and family members should be supported to engage
indevelopmentally appropriate care in order to become compe-tent
caregivers and advocates for the neuroprotection of
theirbabies.13,14,35 Components of parent support should
includeguidance on how to:
(a) Provide comfort and security through consistency of
theirpresence for their baby whenever possible;
(b) Understand the behavioral communication of their babyso as
to best interpret and respond to the baby’s needs;
(c) Create and sustain a healing environment with respect
tosensory exposures and experiences;
(d) Provide supportive positioning and handling for theirbaby,
including supportive oral feeding experiences, skin-to-skin contact
(kangaroo care) and infant touch;
(e) Collaborate with NICU staff to minimize their baby’s
stressand pain in the developmentally-unexpected environ-ment of
the NICU;
(f) Safeguard their baby’s sleep, recognizing the importanceof
sleep to healing, growth and brain development;
(g) Optimize their baby’s nutrition with breast milk
andbreastfeeding whenever possible; and
(h) Protect their baby’s skin and its many functions, including
itsrole as a conduit of neurosensory information to the brain.
STAFF PARTICIPATION IN FCDCCommitment by leadership throughout
the health-care system toan interdisciplinary model of care is
essential for successfulimplementation of FCDC in the NICU,
including administration,medical and nursing teams, and all other
hospital staff whoprovide supports and services to babies and
families in the NICU.3
The needs of babies, families and staff are better met with
anintegrated team approach to achieve optimal
outcomes.Recommendations for staff participation in FCDC:
1. A culturally appropriate and warm welcome for families
shouldaccompany the admission of each NICU baby. Basic
introduc-tory resources written in the primary language should
beprovided and continued throughout their NICU stay. Whenparents
are able to be with their baby, the following should bereviewed
with them: hand hygiene practices, staff roles andsimple
explanations of equipment. However, before medicalequipment is
explained, the focus should be on promotingbaby–parent interaction.
Emphasis should be placed on thecritical importance of the parents’
presence to the short- andlong-term outcomes of their babies, and
parents should be
Recommendations for FCDC of the NICU babyJW Craig et al
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assured of unlimited, around-the-clock information and accessto
their baby.
2. Staff should be educated on principles and methods
ofimplementing FCDC, including the above topics in
‘supportingparents’ roles’ #2.3
3. Staff communications with parents and families should
beregular, understandable (free of medical jargon),
personalized,consistent and carried out in a culturally proficient
manner.36
The quality of staff communication with parents and families,as
provided by every member of the care team, is a key toensure
success of FCDC.
NICU POLICIES TO SUPPORT FCDCBecause of advances in medical
technology, the survival rates ofsick and premature babies have
greatly increased.37 Movingbeyond mere survival, the focus of FCDC
is on quality of life,neuroprotection and successful integration of
the vulnerable babyinto a healthy family unit.35 This requires
integrated relationalcare, which must begin at delivery or as early
as possible duringthe antepartum period.38 A team of professionals
trained in thedevelopmental support of the parent–baby dyad, such
as infantdevelopmental specialists, specially trained nurses,
doctors andpsychologists, along with neonatal therapists including
occupa-tional therapists (OT), physical therapists (PT) and speech
languagepathologists (SLP) must be involved in delivering this care
as partof an interdisciplinary team.11,39–41 Using an integrated,
neuropro-tective, family-centered, developmental care model,
speciallytrained neonatal therapists should provide individualized
thera-peutic interventions in the NICU.41 Attention to the
experience ofthe baby and family requires a system-wide approach,2
and theinclusion of multiple disciplines as a standard of
care.Recommendations for NICU policy to support FCDC:
1. A policy of unlimited, open access for parents should
ensurearound-the-clock information and access to their
baby,including medical rounds and nursing shift changes.
Parentsshould not be viewed or referred to as ‘visitors’, but
rather partof the care team.
2. Clear policies and procedures should promote the
participationof parents’ support system; including the baby’s
siblings,grandparents, extended family and parents’ friends,
recogniz-ing the importance of their involvement to the
family’swell-being.19,42
3. Support to the family should begin whenever maternal or
fetalconditions and diagnoses are identified that could lead to
anNICU stay. This support should include an antenatal consulta-tion
with the NICU health-care team, including the develop-mental
specialist or neonatal therapists (OT, PT and SLP),11,39–41
as well as an anticipatory lactation consultation.4. Optimal
family support in the NICU should include provision of:
(a) Tangible resources; such as a family lounge, sleepingrooms,
showers, laundry, kitchen, computers and a familyroom in which to
practice caring for the baby beforedischarge. Learning materials
about infant developmentand care practices should be created in
understandablelanguage and provided in either written or digital
form (inthe form of videos or apps), as parents may desire;
(b) Psychosocial support for parents from every
professionalgroup providing care in the NICU including the
neonatol-ogists, nurse practitioners and nurses, social
workers,psychologists, neonatal therapists/developmental
specia-lists (OT, PT and SLP), lactation consultants,
hospitalchaplains and the palliative care team;41
(c) Expanded family support inclusive of grandparents
andsiblings, as well as childcare while parents are caring fortheir
baby in the NICU;42
(d) Peer-to-peer support1 (see also ‘Recommendations
forpeer-to-peer support for NICU parents’, this issue); and
(e) Referrals to resources within the community; such asmental
health services, smoking cessation resources andservices for
parents who may have inadequate housing,transportation, food or
clothing, as facilitated by theperinatal social worker or other
staff members.43
5. In the case of a baby’s death, an interdisciplinary
palliative careand bereavement team should provide services to
support thebaby’s parents and extended family (see ‘Recommendations
forpalliative and bereavement care in the NICU: a
family-centeredintegrative approach’, this issue).
6. Preparing for the transition from the NICU to home should
beginat the time of the baby’s admission (see ‘NICU
dischargeplanning and beyond: recommendations for parent
psychosocialsupport’, this issue). Parents should be provided
with:
(a) Anticipatory guidance and education about criteria
fordischarge;
(b) Education about Back-to-Sleep and Shaken Baby Syn-drome and
other issues related to baby’s safety;
(c) Opportunities to develop competence and self-efficacy inthe
care practices needed for their baby at home;
(d) Follow-up resources including referral appointments
toappropriate care providers, which may include homenursing visits,
developmental care specialists (OT, PT andSLP) and breastfeeding
support; and
(e) An assessment of their social support system, their risk
forpostpartum depression or other emotional distress44 andthe
safety of their home environment as needed.
7. Quality improvement projects on FCDC should become anintegral
part of the care provided.2
8. Hospital committee structure and NICU policy
developmentshould include family advocates as regular members.
SUMMARYThe transformation envisioned in the family-centered,
develop-mentally supportive model of care incorporates the
familyfundamentally and consistently into the care of their
baby,recognizing parents as important collaborative members of
theNICU team1,11,45 and embracing their roles as facilitators of
theirbaby’s development. Family involvement is a key to realize
thepotential for long-lasting positive effects on their baby’s
physical,cognitive and psychosocial development. It is imperative
thatNICU policies for parent support and staff support for FCDC be
inplace to offer the standard of care necessary for optimal
outcomesof both baby and parent. Parent support should begin as
soon asmaternal or fetal concerns are identified that could lead to
anNICU stay. Incorporating parents as full participants in their
babies’care should include provision of information regarding(a)
developmental care principles and (b) infant-communicatedbehaviors
indicating stress and/or stability. Staff should beeducated on
principles and methods of implementing FCDC.Additionally, NICU
policies and procedures should support theparticipation of parents
as part of an interdisciplinary team. Finally,hospital committee
structure and NICU policy developmentshould include family
advocates as regular members. Qualityimprovement projects on FCDC
should become an integral part ofthe care provided.
CONFLICT OF INTERESTSL Hall has a consulting agreement with the
Wellness Network, but this organizationhad no input or editing
rights to the content included in the guidelines. Theremaining
authors declare no conflict of interest.
Recommendations for FCDC of the NICU babyJW Craig et al
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© 2015 Nature America, Inc. Journal of Perinatology (2015), S5 –
S8
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ACKNOWLEDGEMENTSMany thanks to other participants from the
National Perinatal Association Workgroupon Psychosocial Support of
NICU Parents for their contributions to this work,including Jaime
DeMott, Erika Goyer, Lauren Leslie, Sue Ludwig and Lisa Rafel.
Thisarticle has been supported by grants and contributions from:
the Wellness Network,Prolacta Bioscience, Division of Neonatology
at Loma Linda University School ofMedicine, Brenau University, NICU
Parent Support at Mercy Hospital in St. Louis, MO,Hand to Hold,
Preemie Parent Alliance, Zoe Rose Memorial Foundation, the
RosemaryKennedy Trust and Eden’s Garden.
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developmental supportivecare: a holistic and humane approach to
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9 Gooding J, Cooper L, Blaine A, Franck L, Howse J, Berns S.
Family support andfamily-centered care in neonatal intensive care
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et al. Parenting verylow birth weight children at school age:
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13 Melnyk B, Feinstein N, Alpert-Gillis L, Fairbanks E, Crean H,
Sinkin R et al. Reducingpremature infants’ length of stay and
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14 Cho J, Holditch-Davis D, Miles S. Effects of maternal
depressive symptoms andinfant gender on the interactions between
mothers and their medically at-riskinfants. J Obstet Gynecol
Neonatal Nurs 2008; 37(1): 58–70.
15 Mehler K, Wendrich D, Kissgen R, Roth B, Obertheur A,
Pillekamp F et al. Mothersseeing their VLBW infants within 3h after
birth are more likely to establish asecure attachment behavior:
evidence of a sensitive period with preterm infants?J Perinatol
2011; 31(6): 404–410.
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2013; 5(3): 612–616.
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Rautava P et al. Parentalpsychological well-being and behavioral
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2012; 129(4): e937–e944.
18 Pierrehumbert B, Nicole A, Muller-Nix C, Forcada-Guex M,
Ansermet F. Parentalpost-traumatic reactions after premature birth:
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19 Brecht C, Shaw R, St John N, Horwitz S. Effectiveness of
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21 DiScala C, Sege R, Guohua L, Reece R. Child abuse and
unintentional injuries: a 10year retrospective. Arch Pediatr
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from the NewbornIntensive Care Unit. Adv Neonatal Care 2005; 5(3):
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23 Lee Y, Garfield C, Kim H. Self-Efficacy Theory as a Framework
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of the 6th International Conferenceon Pervasive Computing
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(doi:10.4108/icst.pervasivehealth.2012.248710; date last accessed
15 April 2015).
24 O’Brien K, Bracht M, Macdonell K, McBride T, Robson K,
O’Leary L et al. A pilotcohort analytic study of Family Integrated
Care in a Canadian neonatal intensivecare unit. BMC Pregnancy
Childbirth 2013; 13(Suppl 1): S12.
25 Ortenstrand A, Westrup B, Brostrom E, Sarman I, Akerstrom S,
Brune T et al. TheStockholm Neonatal Family Centered Care Study:
effects on length of stay andinfant morbidity. Pediatrics 2010;
125(2): e278–e285.
26 Phillips RM, Merritt TA, Goldstein MR, Deming DD, Slater LE,
Angeles DM. Pre-vention of postpartum smoking relapse in mothers of
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374–380.
27 Smith G, Gutovich J, Smyser C, Pineda R, Newnham C, Tjoeng T
et al. Neonatalintensive care unit stress is associated with brain
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28 Milgrom J, Newnham C, Anderson P, Doyle P, Gemmill A, Lee K
et al. Earlysensitivity training for parents of preterm infants:
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330–335.
29 Scher M, Ludington-Hoe S, Kaffashi F, Johnson M,
Holditch-Davis D, Loparo K.Neurophysiologic assessment of brain
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preterm infants. Clin Neurophysiol 2009; 120(10): 1812–1818.
30 Milgrom J, Newnham C, Martin PR, Anderson PJ, Doyle LW, Hunt
RW. Earlycommunication in preterm infants following intervention in
the NICU. EarlyHuman Dev 2013; 89(9): 755–767.
31 White-Traut R, Rankin K, Yoder J, Liu L, Vasa R, Geraldo V et
al. Influence ofH-HOPE intervention for premature infants on
growth, feeding progression andlength of stay during initial
hospitalization. J Perinatol 2015; 35: 636–641.
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Developmental Intervention.J Obstet Gynecol Neonatal Nurs 2013;
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34 Voos K, Ross G, Ward M, Yohay A, Osorio S, Perlman J. Effects
of implementingfamily-centered rounds (FCR) in a neonatal intensive
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39 Ludwig S. Poll question: do you know why infants in the
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Infant Nurs Rev 2013;13(1): 2–4.
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therapy. NewbornInfant Nurs Rev 2013; 13(1): 23–26.
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Occup Ther Pediatr2013; 33(1): 5–26.
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neonatal intensivecare unit. J Perinat Neonatal Nurs 1999; 13(1):
66–77.
43 National Association of Perinatal Social Workers. Standards
for Social Work Servicesin the Newborn Intensive Care Unit.
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44 Hynan M, Mounts K, Vanderbilt D. Screening parents of
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Recommendations for FCDC of the NICU babyJW Craig et al
S8
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Inc.
http://dx.doi.org/10.4108/icst.pervasivehealth.2012.248710http://dx.doi.org/10.4108/icst.pervasivehealth.2012.248710http://dx.doi.org/10.1111/nicc.12062http://napsw.org/about/pdfs/NICU-standards.pdf
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OPEN
REVIEW
Recommendations for peer-to-peer support for NICU parentsSL
Hall1, DJ Ryan2, J Beatty3 and L Grubbs4
Peer-to-peer support provided by ‘veteran’ neonatal intensive
care unit (NICU) parents to those with current NICU babies is
alegitimate and unique form of support that can complement or
supplement, but not replace, services provided by professionalNICU
staff. Peer support can be delivered through hospital- or
community-based programs that offer one-to-one in-person
ortelephone matches, or support groups that meet in-person or via
the Internet. Issues in program development, volunteer trainingand
program operation are discussed. Recommendations for offering peer
support to all NICU parents as an integral component
offamily-centered care and comprehensive family support are
presented.
Journal of Perinatology (2015) 35, S9–S13;
doi:10.1038/jp.2015.143
INTRODUCTIONParents who experience a complicated pregnancy or
the birth of ababy born prematurely, with congenital anomalies or
an illness,face an unknown situation with their baby’s
hospitalization. Thehighly specialized care their baby may require
leaves familiesstruggling as they cope with parenting from a
distance, notfeeling like parents and hesitating to become
involved.1 This newexperience leaves parents with a sense of
powerlessness, feelinguninformed and intimidated because of their
lack of familiaritywith the neonatal intensive care unit (NICU)
environment.1
Families have a vital role in ensuring the health and
well-beingof their NICU babies, and emotional, social and
developmentalsupport of both babies and families are integral
components ofneonatal health care.2 Parents of NICU babies have
theopportunity to be better prepared if they have the
emotionalsupport and aid of other parents who have been through a
similarexperience.Parents with infants in NICUs are well known to
be at increased
risk for postpartum depression,3–5 post-traumatic stress
disorder6,7
and anxiety.3,5 Each of these conditions can disrupt
parent–infantbonding,4,8 leading to adverse childhood outcomes
includingworse cognitive, developmental and behavioral
functioning.3,9
Psychosocial support is critical in mitigating the risk factors
fordeveloping these conditions. Although professional mental
healthstaff such as social workers, and to a lesser degree
psychologists,may be available to deliver services to NICU parents,
not everyfamily may need or want formal support. However, parents
mayactually experience increased stress from their usual
informalsupport networks because their friends and family may not
fullycomprehend the NICU experience,10,11 and friends and family
mayalso be grieving along with the parents.12 NICU parents may
alsobe physically isolated from their traditional support
networks,13
increasing the potential benefit for receiving peer support
serviceswhile in the NICU.Peer-to-peer support (‘peer support’) is
a well-established
modality for improving outcomes in people with a wide rangeof
risk factors and diagnoses.14,15 In a NICU setting, peer supportand
parent mentoring are provided by volunteer parents who
have had a similar experience (‘veteran parents’) and who
havereceived training; programs can either be hospital-based or
becommunity-based. The rationale for peer support is that it offers
ashared experience in which one NICU parent can best understandwhat
another is going through.10,12,16–19 This shared experienceallows
for acceptance without judgment and provides afoundation of respect
between parents.16,18 Peer supportprograms in NICUs can serve to
foster a feeling of safety andcomfort among parents;20 parents can
share their fears, getvalidation for their feelings and gain
perspective.18 Such programscan also serve as a platform for
parents’ questions and provideencouragement for parents to become
advocates for their babiesand themselves.1
There is now a growing body of evidence of the benefits thatpeer
support provides to parents of NICU infants and specialneeds
children. Parents who receive peer support have beenfound to have
increased confidence18,21,22 and well-being,18
problem-solving capacity18,22 and adaptive coping,10
perceptionof social support,16 self-esteem23 and acceptance of
theirsituation.22 Further, parents feel more empowered18 and
interactwith, nurture and care for their infants to a greater
degree23,24
during more frequent visits to the hospital,25 leading to a
shorterlength of stay for their infants.26 Parental stress and
anxiety, aswell as depression, are all reduced.16,21,23,27,28 Peer
supporttherefore offers a ‘legitimate’23 and ‘unique form of
assistancethat is not typically met by the formal service system’22
and onethat cannot come from any other source.19 The support
providedby volunteer mentors from externally developed peer
supportorganizations should never duplicate or replace
formal/profes-sional support provided to parents by NICU
staff;22,29,30 it can,however, supplement and complement internal
professionalservices offered by the hospital.20 Pediatricians and
otherhealth-care professionals should facilitate and encourage
peersupport,18,22,29,30 as recommended by the American Academy
ofPediatrics in 2012.2 As a core principle of family-centered
neonatalcare, it should be an integral component of every NICU
familysupport program.
1Division of Neonatology, St John’s Regional Medical Center,
Oxnard, CA, USA; 2School of Nursing, Elmira College, Elmira, NY,
USA; 3Program Director, Hand to Hold, Austin, TX,USA and 4Founder
and President, NICU Helping Hands, Fort Worth, TX, USA.
Correspondence: Dr SL Hall, Division of Neonatology, St John's
Regional Medical Center, 1600 N. RoseAvenue, Oxnard, CA 93030,
USA.E-mail: [email protected] 2 September 2015; accepted
18 September 2015
Journal of Perinatology (2015) 35, S9–S13© 2015 Nature America,
Inc. All rights reserved 0743-8346/15
www.nature.com/jp
http://dx.doi.org/10.1038/jp.2015.143mailto:[email protected]://www.nature.com/jp
-
TYPES OF PEER-TO-PEER SUPPORTThe support for families in the
NICU can be as unique as thefamilies themselves. All types of
support can be provided bymentors from peer support organizations,
whether they arehospital-based or community-based; support provided
may beemotional, informational or tangible, which might
includeconcrete physical, financial or material assistance.27
A variety of models for providing peer support exist, andmany
parent support organizations offer blended models inwhich parents
can utilize more than one—and sometimes evenall—modalities.
Frequency of contact and duration of contactduring the NICU stay
and beyond to home are dependent oneach program and on individual
participants.
In-person support or telephone supportIn this model, veteran
parents are closely matched on as manydimensions as possible
(language, culture, baby’s diagnosis, familymakeup and so on)10,18
with current NICU parents to serve as theirmentors or ‘buddies’.
Through the relationship that parentmentors establish with new NICU
parents, they can normalizethe parents’ situation18,31 and help
them accept it by modeling apositive attitude.22 Mentors can reduce
parents’ isolation,18,29
sometimes even serving as substitute family and friends.10
Thismay be particularly important to low-income parents who maynot
have well-functioning support networks of their own.22 Thesupport
is provided in non-medical language that is easier forparents to
understand than that provided by the health-careteam.22 Mentors can
also give parents practical advice, help themresolve day-to-day
problems12 and help them access otherservices.22 Although parents
may feel that they need to ‘hold ittogether’ when dealing with the
medical team so that they appearcapable, having a support person
not affiliated with the medicalteam allows parents to let their
guard down and express their trueemotions.16 Within the frequently
changing NICU landscape, aparent mentor can provide a parent with
continuity of carethroughout their NICU experience and even
beyond.29
One potential shortcoming of this model of support is that itmay
be difficult to ensure that all matches between mentors andparents
are good ones, especially when parents are non-Englishspeaking
and/or from different cultures.10,18 Communicationstyles, parenting
styles, outlook on life and parents’ vision of thefuture may differ
in a particular match.18 Matches may alsobecome problematic if the
mentor parent has not experiencedwhat current parent is going
through,10 especially if the mentor’schild is doing better than the
matched parents' child.18 For any ofthese reasons, matches may need
to be changed.Providing peer support by telephone, instead of
in-person, may
offer several advantages to stressed NICU parents who may
nothave time or the ability to meet with their peers and
friends.27
Connections between mentors and parents can occur
morespontaneously and with greater flexibility.16,32 Mentors’
around-the-clock availability, when parents need them, gives
parents afeeling of dependability.18 In addition, telephone support
isprivate and non-stigmatizing.32 It can be effective for
low-incomemothers with diverse ethnic backgrounds,16 and is
easilyaccessible to all regardless of socioeconomic status or
geographiclocation.33 Another important benefit is that parents do
not needchild care in order to make use of telephone support.16
Finding appropriate matches for telephone support relation-ships
may be difficult, just as with in-person matches. Parents
mayultimately not find their match to be helpful,16 and either
partycan lose their match’s phone numbers that can end
therelationship or mentor parents may be negligent in
followingthrough. Alternatively, parents with babies in the NICU
may simplybe too busy to utilize phone support.18 Among the studies
on thevalue of in-person or telephone peer support for NICU
parents,mothers were the primary recipients of support services;
there is
minimal research on how fathers might utilize and respond topeer
support in the NICU. This should be an area for futureresearch.
Parent support groupsParent support groups can be run by a
veteran parent incollaboration with a NICU staff medical (nurse or
doctor) or mentalhealth (social worker or psychologist)
professional; or groups canbe run by parents only or professionals
only. However, groupshave greater stability and longevity if they
are jointly run by aparent and a NICU staff person.24 Parents may
prefer to havecounseling professionals over medical professionals
as groupleaders.34 Groups generally have goals of providing
informationand education, as well as support to parents.29,31
Throughparticipation in a group, parents learn how to interact with
theirbabies and get more involved with their care;
subsequently,parents gain greater confidence in parenting.25,29,31
Groupparticipation further leads parents to visit their baby more
oftenin the NICU and to show greater interest in their
baby’sdevelopment after discharge.25 In the group, parents also
getcoaching on how to interact and collaborate with baby’s
medicalteam,29 and learn how to communicate more effectively
abouttheir baby’s and their own needs.31 Parents get insight into
theirfeelings, feel less isolated29 and have the opportunity to
interactwith others who are in a similar situation.31 Another
benefit thatmay be seen when NICUs offer support groups is that the
NICUstaff can become more responsive to the needs of
familiesthrough hearing about parents’ concerns.31
However, not all parents find value in group support;34
participating in a group may actually increase some
parents’stress.29,30 They may not feel comfortable sharing in a
groupsetting in front of strangers,30 and may not want to hearother
parents’ stories about the complications their
babiesencountered.17
It can be challenging to establish and maintain
groupattendance,34 especially in smaller NICUs. Groups may be
poorlyattended by new mothers who are depressed,35 and parentswhose
babies have shorter stays may not feel the need for groupsupport.36
Other barriers to parents’ use of support groups includetheir lack
of child care and/or transportation34 and the incon-venience of
evening meetings for some parents.17 For all thesereasons, outreach
from either NICU staff or veteran parents isrequired to encourage
parental involvement. Parents may bemore likely to attend groups if
the groups are identified as beingprimarily educational in nature,
rather than ‘support groups’.If professionals run support groups,
then it is important that
they allow participants to learn from each other by giving up
theirrole as expert. Changes in hospital staffing, or lack of
commitmentof group leaders to continue the group in spite of
obstacles, maylead to a group’s dissolution.24
Internet support groupsParents of NICU babies are increasingly
turning to Internet supportgroups and web pages, with the profusion
of parent supportorganizations that now have an online presence.
These sites maybe monitored by veteran parents and/or by
health-care providersincluding social workers or nurses,37 although
there is potential forthe presence of professionals to inhibit
parental exchanges.27
A key benefit to Internet support is that parents can
accesssupport on sites tailored to their needs anytime and
fromanywhere,27 which may be particularly beneficial to parents
whoreside in rural areas,38 and to young single mothers and those
whoare socially isolated.27 Variables that can inhibit
face-to-facecommunication, such as differences in gender, age and
socialclass, are reduced when parents interact on websites.39
Parentshave access to both information and support, and if they
aresocially sensitive, they can anonymously read others’ posts.
The
Recommendations for peer-to-peer support for NICU parentsSL Hall
et al
S10
Journal of Perinatology (2015), S9 – S13 © 2015 Nature America,
Inc.
-
collective knowledge of the group is available to all,
regardless oftheir participation level.27 Information can also be
impartedthrough live chats online; these can be moderated by
profes-sionals, increasing their value.37 Many parents find
Internetsupport sites to be especially helpful after NICU
discharge.There are several potential drawbacks to parents’ use of
Internet
support sites. Emotionally charged or negative
interactions,including abrasive or non-supportive posts, may occur
as a resultof the reduced social presence people have online.27
Informationthat is shared between parents may be misleading or
unreliable,especially if the site lacks professional oversight to
ensure thatdiscussions between participants are medically sound.
Veteranparents need to make it clear that they are not medical
providersand that parents should consult their child’s own doctor
formedical issues.
BARRIERS TO PARENTS’ ACCESSING PEER SUPPORTThe size and budget
of a NICU most often determine what level offormal support can be
provided to families as well as whether theNICU can embrace a peer
support program and whether it ishospital- or community-based. Even
when peer support programsare offered to NICU parents, many
families still encounter barriersto accessing them. Each family’s
needs may vary, making itdifficult for a peer support program to
provide a best fit for all.Redundancy of professional and peer
support services may lead tounderutilization of the latter,17 and
inadequate cultural awarenesson the part of staff as well as their
limited availability to dooutreach may also reduce families’ access
to peer support services.Some NICU families may not feel justified
in using support
services. This may be the case if they are experiencing a
shorterNICU stay, if they have a full-term baby in the NICU or feel
theirbaby is not having major health issues or if they do not feel
theneed for support until they have been in the NICU for a
longerperiod of time. Parents often do not want to leave their
baby’sbedside to access support; time constraints may be
anotherlimitation. Transportation issues, especially for mothers
who haveundergone a cesarean delivery, or financial difficulties
can furtherimpede parents’ ability to access hospital-based peer
supportservices. In addition, parent’s lack of awareness of
availableservices may limit their use.17
ISSUES IN PROGRAM DEVELOPMENTVeteran parent support is grounded
in the experiential knowledgeof parents who have effectively coped
with parenting a NICU babyover time and at home.23 Veteran parents
offer shared commonexperiences and know the stress associated with
a baby’sdiagnosis, have weathered the many transitional times and
havesifted through services so that they have practical knowledge
ofavailable resources.19 The goals of peer support programs
shouldinclude the following: to provide informal psychosocial
support toall families whose babies have been admitted to the NICU;
toincrease both parents’ coping and parenting skills so they gain
theconfidence they need to feel that they are part of the NICU
teamand the competence to care for their baby; to provide
informationto families about hospital and community resources for
their babyand family and to assist families in making the
transition fromhospital to home.20 An ideal peer support program
would provideservices to parents beginning in the antepartum
period, whenappropriate, and continuing through their baby’s NICU
hospita-lization and after discharge. Services would also be
extended tosiblings and grandparents, and to bereaved parents.To
implement a peer support program within a hospital setting,
the need must be identified, collaborative commitment
fromhospital and administrative personnel received, a co