Guest Editors Sue L. Hall, MD, MSW, FAAP and …...Guest Editors: Sue L. Hall, MD, MSW, FAAP and Michael T. Hynan, PhD A workgroup of multidisciplinary professional organizations and

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 PEDIATRICSAMERICAN ACADEMY OF PEDIATRICS

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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; 35(6): 451–457.

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

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Journal of Perinatology (2015), S1 – S4 © 2015 Nature America, Inc.

15 Greene M, Rossman B, Patra K, Kratovil A, Janes J, Meier P. Depression, anxiety,and perinatal-specific posttraumatic distress in mothers of very low birth weightinfants in the neonatal intensive care unit. J Dev Behav Pediatr 2015; 36(5):362–370.

16 Lambert MJ. The efficacy and effectiveness of psychotherapy. In: Lambert MJ (ed).Bergin & Garfield's Handbook of Psychotherapy and Behavior Change, 6th edn.Wiley: New York, 2013, pp 169–218.

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other third party material in this article are included in the article’s Creative Commonslicense, unless indicatedotherwise in the credit line; if thematerial is not included underthe Creative Commons license, users will need to obtain permission from the licenseholder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-nd/4.0/

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.


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© 2015 Nature America, Inc. Journal of Perinatology (2015), S1 – S4

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


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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.


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


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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.


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© 2015 Nature America, Inc. Journal of Perinatology (2015), S5 – S8

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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39 Ludwig S. Poll question: do you know why infants in the neonatal intensivecare unit need neonatal therapy services? Newborn Infant Nurs Rev 2013;13(1): 2–4.

40 Sturdivant C. A collaborative approach to defining neonatal therapy. NewbornInfant Nurs Rev 2013; 13(1): 23–26.

41 Barbosa V. Teamwork in the neonatal intensive care unit. Phys Occup Ther Pediatr2013; 33(1): 5–26.

42 Bialoskurski M, Cox C, Hayes J. The nature of attachment in a 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. National Association of Perinatal SocialWorkers, 2007. Available from http://napsw.org/about/pdfs/NICU-standards.pdf(date last accessed 15 April 2015).

44 Hynan M, Mounts K, Vanderbilt D. Screening parents of high-risk infants foremotional distress: rationale and recommendations. J Perinatol 2013; 33: 748–753.

45 Browne J, Talmi A. Family-based intervention to enhance infant-parent relation-ships in the neonatal intensive care unit. J Pediatr Psychol 2008; 30(8): 1–11.

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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

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.


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


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

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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

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Guest Editors Sue L. Hall, MD, MSW, FAAP and …...Guest Editors: Sue L. Hall, MD, MSW, FAAP and Michael T. Hynan, PhD A workgroup of multidisciplinary professional organizations and