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Family Support and Family-Centered Care

in the NICU:Origins Advances ImpactOrigins, Advances, Impact

Women’s Health SymposiumLas Vegas, NevadaNovember 19, 2010

Judith S. GoodingNational Director, NICU Initiatives

and Chapter Program Strategy

Objectives• Understand the definition, purpose

and philosophical underpinnings of Family Center Care (FCC) in the Family-Center Care (FCC) in the neonatal intensive care unit (NICU);

• Explore current barriers and facilitators to delivery of FCC in the NICU;

• Identify where evidence exists that FCC i i f il FCC practices improve family support, health care and outcomes;

• Recognize steps we can all take to increase and enhance FCC.

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1870-1930: The Age of “Sideshows”

• The role of the incubator• Initial results of hospital

care• Sideshows emerge

– Continued emphasis on technology

– Little parental involvement

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1930-1965: Age of Exclusion

• Continued decline in home births • Rise in artificial nutrition• Concern about infection and

sterility• Increasing technology• Increasing understanding of g g

neonatal pathologies• Strict hospital rules and policies =

nurse as gatekeeper

1965-1980: Age of Awareness

• Recognition of attachment disorders

• Recognition of infant’s communication skills

• Birth of “environmental” neonatology and the role of the family

• Infant Stimulation: good • Infant Stimulation: good or bad, too much or too little

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1980-2009: Age of Enlightenment• Recognizing the impact of FCC on baby

outcome• The birth of developmental care and

the role of the familythe role of the family• Understanding the role of the physical

environment• Joining forces• Rapid development and promotion of:

Philosophy, concepts, and principles of FCCImportance of family roleBest practices and potentially best practicesEvidence for specific components of FCC

Philosophy

Family Centered Care is…A h di l An approach to medical care

rooted in the belief that optimal health outcomes are achieved when patients’ family members play an active role in providing emotional social and emotional, social and developmental support.

AAP Committee on Hospital Care and Institute for Family-Centered Care, “Policy Statement on Family Centered Care and the Pediatrician’s Role” (2003)

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Harrison, H. (1993). The principles for family-centered neonatal care. Pediatrics, 92, 643-650.

1. Open and honest communication between parents and professionals

2. Parents need same facts and interpretation of facts as the professionalsprofessionals

3. In situations involving high mortality and morbidity risk, parents have the right to make decisions regarding aggressive treatment

4. Antepartum parents should be given information about adverse outcome risk and given right to state treatment preferences in advance.

Parents and professionals must work together to:5 ll i t b b ’ i5. …alleviate baby’s pain.6. …ensure appropriate NICU environment.7. …ensure safety and efficacy of treatments.8. …create programs and policies to promote parenting

skills and maximum involvement.9. …promote meaningful long-term follow-up.

Principles of FCC-Child & Family 1. Respecting each child and his or her family2. Honoring racial, ethnic, cultural, and socioeconomic diversity and its effect on the

family’s experience and perception of care3. Recognizing and building on the strengths of each child and family, even in difficult

and challenging situationsand challenging situations4. Supporting and facilitating choice for the child and family about approaches to care

and support5. Ensuring flexibility in organizational policies, procedures, and provider practices so

services can be tailored to the needs, beliefs, and cultural values of each child and family

6. Sharing honest and unbiased information with families on an ongoing basis and in ways they find useful and affirming

7. Providing and/or ensuring formal and informal support (e.g., family-to-family support) for the child and parent(s) and/or guardian(s) during pregnancy, childbirth, infancy, childhood, adolescence, and young adulthood

8. Collaborating with families at all levels of health care, in the care of the individual child and in professional education, policy making, and program development

9. Empowering each child and family to discover their own strengths, build confidence, and make choices and decisions about their health

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Core ConceptsPeople are treated with respect and dignity.

Health care providers communicate and share complete and unbiased information with patients and families in ways that are affirming and useful.

Individuals and families build on their strengths through participation in experiences that enhance control and independence.

Collaboration among patients, families, and providers occurs in policy and program development and professional education, as well as in the delivery of care.

Institute for Family–Centered Care

Delivery of FCC in the NICU

NICU StaffDesign/Physical EnvironmentDesign/Physical EnvironmentOther Parents– Parent Volunteers– Parent Support Groups

Technology-based– Online– Videoconferencingg– Computer stations

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Components of FCC in the NICUBreastfeeding supportUnlimited parent presenceKangaroo carePalliative care supportParent participants in care and decision-makingSupport of specific populationsTransport supportSibling supportParent education seminarsB t tBereavement supportNICU staff supportFamily support activities (scrapbooking)Transition to homeInformation/materialsParents on rounds

Kaleidoscope

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An approach to medical care rooted in the belief that optimal health outcomes are achieved when patients’ family members play an active p yrole in providing emotional, social and developmental support.

Family-Centered Care in the NICU

• What Do We Know?• Need for FCCNeed for FCC• Implementation Models• Overall Impact of FCC in the NICU• Measuring Specific Components of FCC

A U i g Wh t W K ?• Are we Using What We Know?

• What More Do We Need to Know?

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The Needs of NICU families

Berns, S. D., Boyle, M. D., Popper, B., & Gooding, J. S. (2007). Results of the premature birth national need-gap study. p g p yJournal of Perinatology, 27, S38-S44.

Collins JW, Wambach J, David RJ, Rankin K. Women’s lifelong exposure to neighborhood poverty and low birth weight: a population-based study. Maternal Child Health J,13:326-333, 2009.

Shaw, R. J., DeBlois, T., Ikuta, L., Ginzburg, K., Fleisher, B., & Koopman, C. (2006). Acute stress disorder among parents of p , ( ) g pinfants in the neonatal intensive care nursery. Psychosomatics, 47, 206-212.

ImplementationImplementation models, best practices, and systems change

• AAP: Role of the Pediatrician

• Institute for Family-Centered Care

• March of Dimes NICU Family Supporty pp

• Family-Centered Care Map• Vermont Oxford Network,

NIC-Q

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Components of FCC in the NICU

• Kangaroo Care (skin-to-skin holding)• Supporting mothers in providing

breast milkbreast milk• Supportive information• Empowering activities• Parenting Preterm Infants• Parent participation in infant care-

giving• Parent education/readiness for

discharge• Parent-to-Parent support• Designated, dedicated staff person• NICU Design/physical environment

• Impact of a family-centered care initiative on NICU care, staff and families. Journal of Perinatology, 2007

• The effect of skin-to-skin contact (kangaroo care) shortly after birth on the neurobehavioral responses of the term newborn: A randomized, controlled trial. Pediatrics, 2004

• Challenging the Precepts of Family Centered-Care: Testing a Philosophy. Pediatric Nursing, 2000

• Reducing preterm infants’ length of stay and improving parents’ mental health outcomes with the Creating Opportunities for Parent Empowerment (COPE) Neonatal Intensive Care Unit Program: A randomized, controlled trial. Pediatrics, 2006

• Evaluation and development of potentially better practices for improving family-centered care in neonatal intensive care units. Pediatrics, 2003

• The Stockholm Neonatal Family Centered Care Study: Effects on Length of Stay and Infant Morbidity. Pediatrics 2010

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March of Dimes: Champion for All Babies

March of Dimes helps moms have full-term pregnancies and healthy

babies. And if something goes wrong, we offer information and comfort to families. We research

the problems that threaten our b bi d k ti babies and work on preventing

them.

• Providing information and f t t f ili d i th

NICU Family Support®Core Program Goals

comfort to families during the NICU hospitalization of their newborn, during the transition home, and in the event of a newborn death

• Contributing to NICU staff • Contributing to NICU staff professional development

• Promoting the philosophy of family-centered care in NICUs

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March of Dimes NICU Family Support®

On-site NICU Family Support SpecialistFamily-Staff Action CommitteeFamily Staff Action Committee

Parent Care Kits/Educational MaterialsProfessional Development

Customized ProgramsDirect Service ActivitiesParent-to-Parent Support

Evaluation

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March of Dimes NICU March of Dimes NICU Family Support “changed

our NICU culture”-- Hospital Administrator Interview

81% of staff said that NICU Family Support resulted in more

informed NICU parents

79% of staff said the program resulted in less

stress on parents

informed NICU parents

75% of staff said that NICU Family Support resulted in Family Support resulted in increased confidence of

parents at discharge

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Changes after Implementation of NICU Family Support

• Open and honest communication between parents and staffand staff

• Involvement of parents in decision-making• Sharing information and the meaning of information

with parents• A partnership between professionals and parents in

the provision of care• The development of policies and programs to

promote parenting skills and family involvement

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Putting Evidence into Practice

P t f NICU t ff h idPercent of NICU staff who consider Percent of NICU staff who consider Percent of NICU staff who stated Percent of NICU staff who consider

kangaroo care highly effective in reducing parent stress:

kangaroo care highly effective in providing comfort to parents:

73

Percent of NICU staff who consider kangaroo care highly effective in

facilitating parent/infant bonding:

80

that kangaroo care was routinely performed in their units:

86773808

Putting Evidence into Practice?

• Kangaroo Care (skin-to-skin holding)S ti th i idi b t ilk• Supporting mothers in providing breast milk

• Supportive information• Parent participation in infant care-giving• Parent education/readiness for discharge• Parent-to-Parent support• Designated dedicated staff person• Designated, dedicated staff person

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Building the Body of Evidence• Some components of FCC in the NICU have minimal to no

research• Population-specific research is minimal

f d b l k• Information and outcomes about inequities is lacking• Outcomes needing additional study:

• Maternal health outcomes (especially subsequent preterm birth)

• Family stability and security• Infant health outcomes (including rehospitalization)• Longer-term child health outcomesLonger term child health outcomes

• Site specific research • Examination of financial and other resource implications• Additional research needed even in well-studied areas

Actions You Can Take

• Examine…your own approach to FCC and its components

• Practice…what is demonstrated to work• Innovate…by developing new practices to

be evaluated• Collaborate…through sharing and learning

with other NICUswith other NICUs• Build…the body of research and evidence

for FCC in the NICU

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2010–2040: Age of …

ReferencesAls, H., Duffy, F.H., McAnulty, G.B., Rivkin, M.J., Vajapeyam, S., Mulkern, R.V., Warfield, S.K.,

Huppi, P.S., Butler, S.C., Conneman, N., Fischer, C., and Eric. C. Eichenwald. (2004) Early experience alters brain function and structure. Pediatrics 113(4), 846-857.

Als, H., Lawhon, G., Duffy, F. H., McAnulty, G. B., Gibes-Grossman, R., & Blickmam, J. G. (1994). Individualized developmental care for the very low-birth-weight preterm infant JAMA 272 Individualized developmental care for the very low-birth-weight preterm infant. JAMA, 272, 853-858.

Alsop-Shields, L. (2001) John Bowlby and James Robertson : theorists, scientists and crusaders for improvements in the care of children in hospital. Issues and Innovations in Nursing Practice, Journal of Advanced Nursing, 35(1), 50-58.

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Brandon, S., Lindsay, M., Lovell-Davis, J. and Sebastian Kraemer. (2009). “What is wrong with emotional upset?” 50 years on from the Platt Report. Arch. Dis. Child 94, 173-177.

Carter, B. (2008). Commentary on Shields, L, Prat J and Hunter J (2006) Family-centred care: a review of qualitative studies. Journal of Clinical Nursing, 5, 1317-23.

Collins JW, Wambach J, David RJ, Rankin K. Women’s lifelong exposure to neighborhood poverty and low birth weight: a population-based study. Maternal Child Health J,13:326-333, 2009.

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References (continued)Conway, J., Johnson, B., Edgman-Levitan, S., Schlucter, D. F., Sodomka, P., & Simmons, L. (2006).

Partnering with patients and families to design a patient- and family-centered health care system: A road map for the future. Available at http://www.familycenteredcare.org/pdf/Roadmap.pdf.

Cooper, L. G, Gooding, J. S., Gallagher, J., Sternesky, L., Ledsky, R., Berns, S. D. (2007). Impact of p , , g, , g , , y, , y, , , ( ) pa family-centered care initiative on NICU care, staff and families. Journal of

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Dunn, M.S.,Reilly, M.C., Johnston, A.M., Hoopes, R.D. Jr., and M.R. Abraham. (2006). Development and dissemination of potentially better practices for the provision of family-centered care in neonatology: the family-centered care map. Pediatrics 118(2), s95-s108.

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Galvin, E., Boyers, L., Schwartz, P.K., Jones, M.W., Mooney, P., Warwick, J. and J. Davis. (2000) Challenging the precepts of family-centered care: testing a philosophy. Pediatric Nursing 26(6), 625-32.

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intensive care unit in the outcome of high-risk infants. Journal of Perinatology XII(2), 164-166.Graven, S.N. et al. (1992) The high-risk infant environment Part 2: the role of caregiving and the Graven, S.N. et al. (1992) The high risk infant environment Part 2: the role of caregiving and the

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(2008). Partnering with patients and families to design a patient- and family-centered health care system: Recommendations and promising practices. Bethesda, MD: Institute for Family-Centered Care. Retrieved November 30, 2009 from http://www.familycenteredcare.org/pdf/PartneringwithPatientsandFamilies.pdf.

Johnston, A.M., Bullock, C.E., Graham, J.E., Reilly, M.C., Rocha, C., Hoopes Jr, R.D., Van Der Meid, C., Guiterrez, S., Abraham, M.R. (2006) Implementation and Case-Study Results of Potentially Better Practices for Family-Centered Care: The Family-Centered Care Map. y y y pPediatrics 118, S108-S114.

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