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POLICY STATEMENT Patient- and Family-Centered Care and the Pediatricians Role abstract Drawing on several decades of work with families, pediatricians, other health care professionals, and policy makers, the American Academy of Pediatrics provides a denition of patient- and family-centered care. In pediatrics, patient- and family-centered care is based on the understand- ing that the family is the childs primary source of strength and support. Further, this approach to care recognizes that the perspectives and information provided by families, children, and young adults are essen- tial components of high-quality clinical decision-making, and that patients and family are integral partners with the health care team. This policy statement outlines the core principles of patient- and family- centered care, summarizes some of the recent literature linking pa- tient- and family-centered care to improved health outcomes, and lists various other benets to be expected when engaging in patient- and family-centered pediatric practice. The statement concludes with spe- cic recommendations for how pediatricians can integrate patient- and family-centered care in hospitals, clinics, and community settings, and in broader systems of care, as well. Pediatrics 2012;129:394404 INTRODUCTION Patient- and family-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a mutually benecial partnership among patients, families, and pro- viders that recognizes the importance of the family* in the patient s life. When patient- and family-centered care is practiced it shapes health care policies, programs, facility design, evaluation of health care, and day-to-day interactions among patients, families, physicians, and other health care professionals. Health care professionals who practice patient- and family-centered care recognize the vital role that *Family is broadly dened. The following serves as an example of such a denition: We all come from families. Families are big, small, extended, nuclear, multigenerational, with one parent, two parents and grandparents. We live under one roof or many. A family can be as temporary as a few weeks, as permanent as forever. We become part of a family by birth, adoption, marriage, or from a desire for mutual support. As family members, we nurture, protect, and inuence one another. Families are dynamic and are cultures unto themselves, with different values and unique ways of realizing dreams. Together, our families become the source of our rich cultural heritage and spiritual diversity. Each family has strengths and qualities that ow from individual members and from the family as a unit. Our families create neighborhoods, communities, states, and nations.(New Mexicos Memorial Task Force on Children and Families and the Coalition for Children, 1990) COMMITTEE ON HOSPITAL CARE and INSTITUTE FOR PATIENT- AND FAMILY-CENTERED CARE KEY WORD patient care ABBREVIATIONS AAPAmerican Academy of Pediatrics IHIInstitute for Healthcare Improvement IOMInstitute of Medicine NICHQNational Institute for Childrens Healthcare Quality This document is copyrighted and is property of the American Academy of Pediatrics and its Board of Directors. All authors have led conict of interest statements with the American Academy of Pediatrics. Any conicts have been resolved through a process approved by the Board of Directors. The American Academy of Pediatrics has neither solicited nor accepted any commercial involvement in the development of the content of this publication. All policy statements from the American Academy of Pediatrics automatically expire 5 years after publication unless reafrmed, revised, or retired at or before that time. www.pediatrics.org/cgi/doi/10.1542/peds.2011-3084 doi:10.1542/peds.2011-3084 PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). Copyright © 2012 by the American Academy of Pediatrics 394 FROM THE AMERICAN ACADEMY OF PEDIATRICS Organizational Principles to Guide and Dene the Child Health Care System and/or Improve the Health of all Children by guest on July 11, 2018 www.aappublications.org/news Downloaded from

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POLICY STATEMENT

Patient- and Family-Centered Care and the Pediatrician’sRole

abstractDrawing on several decades of work with families, pediatricians, otherhealth care professionals, and policy makers, the American Academy ofPediatrics provides a definition of patient- and family-centered care. Inpediatrics, patient- and family-centered care is based on the understand-ing that the family is the child’s primary source of strength and support.Further, this approach to care recognizes that the perspectives andinformation provided by families, children, and young adults are essen-tial components of high-quality clinical decision-making, and thatpatients and family are integral partners with the health care team.This policy statement outlines the core principles of patient- and family-centered care, summarizes some of the recent literature linking pa-tient- and family-centered care to improved health outcomes, and listsvarious other benefits to be expected when engaging in patient- andfamily-centered pediatric practice. The statement concludes with spe-cific recommendations for how pediatricians can integrate patient- andfamily-centered care in hospitals, clinics, and community settings, andin broader systems of care, as well. Pediatrics 2012;129:394–404

INTRODUCTION

Patient- and family-centered care is an innovative approach to theplanning, delivery, and evaluation of health care that is grounded ina mutually beneficial partnership among patients, families, and pro-viders that recognizes the importance of the family* in the patient’slife. When patient- and family-centered care is practiced it shapeshealth care policies, programs, facility design, evaluation of healthcare, and day-to-day interactions among patients, families, physicians,and other health care professionals. Health care professionals whopractice patient- and family-centered care recognize the vital role that

*Family is broadly defined. The following serves as an example of such a definition: “We allcome from families. Families are big, small, extended, nuclear, multigenerational, with oneparent, two parents and grandparents. We live under one roof or many. A family can be astemporary as a few weeks, as permanent as forever. We become part of a family by birth,adoption, marriage, or from a desire for mutual support. As family members, we nurture,protect, and influence one another. Families are dynamic and are cultures unto themselves,with different values and unique ways of realizing dreams. Together, our families becomethe source of our rich cultural heritage and spiritual diversity. Each family has strengthsand qualities that flow from individual members and from the family as a unit. Our familiescreate neighborhoods, communities, states, and nations.” (New Mexico’s Memorial TaskForce on Children and Families and the Coalition for Children, 1990)

COMMITTEE ON HOSPITAL CARE and INSTITUTE FOR PATIENT-AND FAMILY-CENTERED CARE

KEY WORDpatient care

ABBREVIATIONSAAP—American Academy of PediatricsIHI—Institute for Healthcare ImprovementIOM—Institute of MedicineNICHQ—National Institute for Children’s Healthcare Quality

This document is copyrighted and is property of the AmericanAcademy of Pediatrics and its Board of Directors. All authorshave filed conflict of interest statements with the AmericanAcademy of Pediatrics. Any conflicts have been resolved througha process approved by the Board of Directors. The AmericanAcademy of Pediatrics has neither solicited nor accepted anycommercial involvement in the development of the content ofthis publication.

All policy statements from the American Academy of Pediatricsautomatically expire 5 years after publication unless reaffirmed,revised, or retired at or before that time.

www.pediatrics.org/cgi/doi/10.1542/peds.2011-3084

doi:10.1542/peds.2011-3084

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2012 by the American Academy of Pediatrics

394 FROM THE AMERICAN ACADEMY OF PEDIATRICS

Organizational Principles to Guide and Define the ChildHealth Care System and/or Improve the Health of all Children

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families play in ensuring the healthand well-being of children† and familymembers of all ages. These practi-tioners acknowledge that emotional,social, and developmental support areintegral components of health care.They respect each child and family’sinnate strengths and cultural valuesand view the health care experienceas an opportunity to build on thesestrengths and support families in theircaregiving and decision-making roles.Patient- and family-centered approacheslead to better health outcomes andwiser allocation of resources as well asto greater patient and family satisfac-tion. It should be noted that the term“family-centered care,” is replaced withthe term “patient- and family-centeredcare,” to more explicitly capture theimportance of engaging the family andthe patient in a developmentally sup-portive manner as essential membersof the health care team. Patient- andfamily-centered care in pediatrics isbased on the understanding that thefamily is the child’s primary source ofstrength and support and that thechild’s and family’s perspectives andinformation are important in clinicaldecision-making. Practitioners of pa-tient- and family-centered care arekeenly aware that positive health careexperiences in provider/family part-nerships can enhance parents’ confi-dence in their roles and, over time,increase the competence of childrenand young adults to take responsibilityfor their own health care, particularlyin anticipation of the transition to adultservice systems.

“During the past decade, family advo-cates have promoted family-centeredcare, ‘the philosophies, principles andpractices that put the family at theheart or center of services; the family

is the driving force.’”1 This is in har-mony with, but different from, “…fam-ily pediatrics [family-oriented care]” asoutlined in the American Academy ofPediatrics (AAP) Task Force on Family,which “…extends the responsibilitiesof the pediatrician to include screening,assessment, and referral of parents forphysical, emotional, or social problemsor health risk behaviors that can ad-versely affect the health and emo-tional or social well-being of theirchild.”1 This policy statement specifi-cally defines the expectations of pa-tient- and family-centered care.

CORE PRINCIPLES OF PATIENT-AND FAMILY-CENTERED CARE

Patient- and family-centered care isgrounded in collaboration among pa-tients, families, physicians, nurses, andother professionals in clinical care aswell as for the planning, delivery, andevaluation of health care, and in theeducation of health care professionalsand in research, as well. These collab-orative relationships are guided by thefollowing principles:

1. Listening to and respecting eachchild and his or her family. Honoringracial, ethnic, cultural, and socioeco-nomic background and patient andfamily experiences and incorporat-ing them in accordance with patientand family preference into the plan-ning and delivery of health care.

2. Ensuring flexibility in organizationalpolicies, procedures, and providerpractices so services can be tailoredto the needs, beliefs, and culturalvalues of each child and family andfacilitating choice for the child andfamily about approaches to care.2

3. Sharing complete, honest, and un-biased information with patientsand their families on an ongoingbasis and in ways they find usefuland affirming, so that they mayeffectively participate in care anddecision-making to the level they

choose. Health information for chil-dren and families should be availablein the range of cultural and linguisticdiversity in the community and takeinto account health literacy. In hospi-tals, conducting physician roundsin the patients’ rooms with nursingstaff and family present can en-hance the exchange of informationand encourage the involvement ofthe family in decision-making.3–6

4. Providing and/or ensuring formaland informal support (eg, peer-to-peer support) for the child andfamily during each phase of thechild’s life. Such support is pro-vided so that Health Insurance Por-tability and Accountability Act andother relevant ethical and legalguidelines are followed.

5. Collaborating with patients andfamilies at all levels of health care:in the delivery of care to the individ-ual child; in professional education,policy making, program development,implementation, and evaluation; andin health care facility design. As partof this collaboration, patients andfamilies can serve as members ofchild or family advisory councils,committees, and task forces dealing,for example, with operational issuesin health care facilities; as collabora-tors in improving patient safety; asparticipants in quality-improvementinitiatives; and as leaders or co-leaders of peer-support programs.7,8 In the area of medical research,patients and families should havevoices at all levels in shaping theresearch agenda, in determininghow children and families partici-pate in research, and in decidinghow research findings will beshared with children and families.9

6. Recognizing and building on thestrengths of individual children andfamilies and empowering them to dis-cover their own strengths, build con-fidence, and participate in making

†In accordance with the policies of the AAP,references to “child” and “children” in thisdocument includes infants, children, adolescents,and young adults up to age 21.

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choices and decisions about theirhealth care.7,10–12

A self-assessment tool is available forfamilies to evaluate whether the carethey are receiving fits into the realm offamily-centered care and also can beused by pediatricians to evaluate thecare they deliver.13

HISTORY OF PATIENT- AND FAMILY-CENTERED CARE

Patient- and family-centered careemerged as an important concept inhealth care during the second halfof the 20th century, at a time of in-creasing awareness of the impor-tance of meeting the psychosocialand developmental needs of childrenand of the role of families in pro-moting the health and well-being oftheir children.14–24 Much of the earlywork focused on hospitals; for ex-ample, as research emerged aboutthe effects of separating hospitalizedchildren from their families, manyinstitutions adopted policies that wel-comed family members to be withtheir child around the clock and alsoencouraged their presence duringmedical procedures. The Maternaland Child Health Bureau of the HealthResources and Service Administra-tion played an active role in further-ing the involvement of families andthe support of family issues and ser-vice needs. Federal legislation of thelate 1980s and 1990s,‡ much of it tar-geted at children with special needs,

provided additional validation of theimportance of family-centered princi-ples.7,10 Family-centered care has longbeen a characteristic of an effectivemedical home.25 Family Voices, foundedin 1992, advocates for family-centered,community-based services for chil-dren with special health care needs.26

Building on the work begun in the pre-vious decade, the Institute for Family-Centered Care (now the Institute forPatient- and Family-Centered Care) wasalso founded in 1992 to foster thedevelopment of partnerships amongpatients, families, and health care pro-fessionals and to provide leadershipfor advancing the practice of family-centered care in all settings.7,10

Patient- and family-centered care issupported by a growing body of re-search and by prestigious organiza-tions, such as the Institute of Medicine(IOM), which in its 2001 report “Cross-ing the Quality Chasm: A New HealthSystem for the 21st Century,” empha-sized the need to ensure the involve-ment of patients in their own healthcare decisions, to better inform pa-tients of treatment options, and toimprove patients’ and families’ accessto information.27 It specifies 6 domainsfor improving patient safety, one ofwhich is patient centeredness. TheIOM’s recommendations are intrinsicto patient- and family-centered prac-tice. In 2006, the Institute for Family-Centered Care and the Institute forHealthcare Improvement (IHI) broughttogether leadership organizations andpatient and family advisors to advancethe practice of patient- and family-centered care and ensure that thereare sustained, effective partner-ships with patients and families inall aspects of the health care sys-tem.7,8

The AAP has incorporated many ofthe principles of patient- and family-centered care into several policystatements and manuals.25,28–37

In 2006, the AAP Board of Directorsapproved a Parent Advisory Group pilotprogram under the Section on HomeCare.38 Members of the Parent Advi-sory Group all share a special interestin patient- and family-centered care,have personal experience with chil-dren with special health care needs,and serve as advisors and leaders forpatient- and family-centered pediatriccare within their own communitiesand at the national level.

The IHI, founded in 1991, is an inde-pendent organization founded to im-prove health care throughout the world.Among its core values is patient andfamily centeredness.39 The NationalInstitute for Children’s HealthcareQuality (NICHQ) was launched as an IHIprogram in 1999. The NICHQ is dedi-cated to improving the quality of healthcare provided to children. One compo-nent of its 4-part improvement agendais promoting evidence-based patient-and family-centered care for childrenwith chronic conditions. A strong fo-cus of the NICHQ is the participation offamily advisors.40

The value of patient- and family-centered care in health care qualityis recognized by the American HospitalAssociation–McKesson Quest for Qual-ity Prize, which raises awareness ofpatient- and family-centered care andrewards successful efforts to developand promote improvements in thesafety and quality of care.41 As a resultof improved outcomes when patient-and family-centered care is deliveredin hospitals, the American HospitalAssociation partnered with the In-stitute for Patient- and Family-CenteredCare to produce and distribute a tool-kit, Strategies for Leadership: Patient-and Family-Centered Care, to the chiefexecutive officer of every hospital inthe United States to assist adminis-tration and medical leadership in ad-vancing patient- and family-centeredpractice and to complement other

‡Among the legislation advancing the practice offamily-centered care are such statutes as: theEducation of the Handicapped Act Amendments of1986 (Public Law 99-457), Part H—Early InterventionPrograms for Handicapped Infants and Toddlers;Maternal and Child Health block grant amendmentscontained in the Omnibus Budget Reconciliation Actof 1989 (Public Law 101-239); Individuals WithDisabilities Education Act of 1990 (Public Law 101-476); the Developmental Disabilities Assistance andBill of Rights Act of 1990 (Public Law 101-496);Mental Health Amendments of 1990 (Public Law 101-639); and Families of Children With DisabilitiesSupport Act of 1994 (Public Law 103-382).

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efforts to improve patient safety andthe quality of patient care.8,42–44

The National Patient Safety Foundation,with patients and families serving onits Board of Directors and on a Patientand Family Committee of the Board,is working to ensure that all healthcare organizationsmeaningfully involvepatients and families in enhancingpatient safety and redesigning healthcare systems and processes.45 TheJoint Commission, likewise, promotespatient- and family-centered care intheir efforts to improve patient safetypractices.46

The National Survey of Children withSpecial Health Care Needs in 2005 to2006 demonstrated that, although mostfamilies of children with special healthcare needs feel they are partners in thecare of their child, approximately one-third do not, particularly families withincomes below the poverty level, fam-ilies without health care insurance, andHispanic or black families.47

OUTCOMES OF PATIENT- ANDFAMILY-CENTERED CARE: BRIEFSUMMARY OF RECENT LITERATURE

Patient- and family-centered care canimprove patient and family outcomes,improve the patient’s and family’s ex-perience, increase patient and familysatisfaction, build on child and familystrengths, increase professional satis-faction, decrease health care costs,and lead to more effective use of healthcare resources, as shown in the fol-lowing examples from the literature.

Patient and Family Outcomes

High-quality, patient- and family-centered primary care is associatedwith a significant reduction in non-urgent emergency department visits inchildren.48 Family presence duringhealth care procedures decreasesanxiety for the child and the parents.Research indicates that when parentsare prepared, they do not prolong the

procedure or make the provider moreanxious.49–53 Children whose motherswere involved in their posttonsillectomycare recovered faster and were dis-charged earlier than were childrenwhose mothers did not participate intheir care.12

A series of quality-improvement stud-ies found that children who had un-dergone surgery cried less, were lessrestless, and required less medicationwhen their parents were present andassisted in pain assessment and man-agement.54 Children and parents whoreceived care from child life special-ists29 did significantly better than didcontrol children and parents on meas-ures of emotional distress, copingduring procedures, and adjustmentduring hospitalization, posthospitaladjustment, and recovery, includingrecovery from surgery.55

A multisite evaluation of the efficacy ofparent-to-parent support found that1-to-1 support increased parents’ con-fidence and problem-solving capacity.Interviewees noted that this type ofsupport could not be provided throughany other means.56,57 Family-to-familysupport can have beneficial effectson the mental health status of moth-ers of children with chronic illness.58

Since 1993, patient- and family-centeredcare has been a strategic priority at 1children’s hospital. Families partici-pated in design planning for the newhospital, and they have been involvedin program planning, staff education,and other key hospital committeesand task forces. In recent years, thischildren’s hospital has consistentlyreceived among the highest patientand family satisfaction scores in anationwide survey of comparable pe-diatric facilities.59 And more recently,it has demonstrated decreased lengthof stay, reduced medical errors, andimproved staff satisfaction.60,61 Thischildren’s hospital is part of a largeracademic medical center and health

system, recognized nationally for itscommitment to patient- and family-centered practice. This health systemis among the most cost-efficient or-ganizations in the University HealthSystem Consortium database and, forthe past 5 years, has reported a de-crease in malpractice claims and liti-gation, whereas many other academicmedical centers, as measured by theUniversity Health System Consortium,have reported annual increases in theseexpenditures.8,62

A different children’s hospital has alsobeen integrating patient- and family-centered care throughout its hospitaland outpatient facilities since the late1990s. In 2001, in response to the IOMreport, “To Err is Human,”63 and itsoutcome data, this hospital imple-mented an ambitious plan to improvesafety and quality. Critical to its effortsand its subsequent success in im-proving safety and quality, improve-ment teams have consistently involvedfamilies as active members.64 Becauseof the hospital’s excellence in quality,safety, and patient experience, it hasbeen the recipient of many honors,including the Leapfrog Group TopHospital Award, the American HospitalAssociation’s McKesson Quest for QualityPrize, and the Picker Award for Excel-lence in the Advancement of Patient-Centered Care.

In a federally funded medical home proj-ect using a quality-improvement model,families served by 13 community-basedpediatric practices are collaboratingwith pediatricians and office staff toenhance the practices’ capacity toprovide care to children with specialhealth care needs and to be moreresponsive to the priorities and needsof these children and their families.These practices have permanently in-tegrated family input into decisionsabout their processes of care andhave demonstrated a 34% improvementon a standardized measure of medical

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home implementation.65 A review ofthe emerging literature on medicalhomes reported that there are favor-able outcomes associated with medi-cal home including better health status,timeliness of care, family perceptionof family centeredness, and familyfunctioning.66 Clear communicationbetween physicians, patients, and par-ents leads to improved satisfactionwith acute inpatient pediatric andNICU care.67 Patient and family sat-isfaction are linked to hospital safetyand communication.68

Parents of infants who received morepatient- and family-centered care whilein the NICU and in discharge planningwere more satisfied with the care theyreceived, demonstrated increased com-petence and confidence in infant care-giving, and were more willing to seekhelp from health care providers.69–72

Use of a patient- and family-centeredcare map to identify opportunitiesfor and implement patient- and family-centered practices resulted in significantimprovement in growth parametersand earlier discharge of very low birthweight newborn infants.73 This caremap was designed for the NICU topromote family-centered care through-out daily interventions with infantsand families to deliver care in a holis-tic fashion to meet the developmental,physical, and psychosocial needs of theinfants and their families.

Staff Satisfaction

Staff members at another children’shospital who participate in educationprograms with families as teachers be-lieve that these experiences are highlyvaluable.74 A different program hasshown that a family faculty program,combined with home visits, producespositive changes in medical students’perceptions of children and adolescentswith cognitive disabilities.75

When patient- and family-centered care isthe cornerstone of culture in a pediatric

emergency department, staff mem-bers have more positive feelings abouttheir work than do staff members inan emergency department that doesnot emphasize emotional support. Thismay lead to improved job performance,less staff turnover, and a decrease incosts.76

Cost-Effectiveness

Coordination of prenatal care in amanner consistent with patient- andfamily-centered principles for pregnantwomen at risk of poor birth outcomesat 1 medical center resulted in moreprenatal visits, decreased rates of to-bacco and alcohol use during preg-nancy, higher infant birth weights andgestational ages, and fewer NICU days.All of these factors decrease healthcare costs and the need for additionalservices.77

After redesigning their transitional carecenter in a way supportive of families,creating 24-hour open visiting forfamilies, and making a commitment toinformation sharing, another child-ren’s hospital experienced a 30% to50% decrease in the infants’ length ofhospital stay. Other outcomes includedfewer rehospitalizations, decreased useof the emergency department, greaterparent satisfaction, and a decrease inmaternal anxiety.78

In 1 community program a family sup-port service for children with HIV in-fection hired family support workerswhose backgrounds and life experi-ences were similar to those of familiesserved by that program. This approachresulted in decreases in HIV-relatedhospital stays, missed clinic appoint-ments, and foster care placements.79

One county program has a children’smanaged-care plan based on a family-participation service model. Familiesdecide for themselves how dollars arespent for their children with specialmental health needs, as long as the ser-vices are developed by a collaborative

team created by the family. In the 5years since the program’s inception, theproportion of children living in com-munity homes instead of institutionshas increased from 24% to 91%; thenumber of children attending commu-nity schools has grown from 48% to95%; and the average cost of care perchild or family per month has de-creased from ∼$6000 to $4100.80–82

The risk-management literature indi-cates that patients and families aresignificantly less likely to initiate law-suits, even when mistakes have beenmade, if there is open and effectivecommunication and there are trustingrelationships between the practitionerand patient and family. Communicationproblems that can lead to malpractice,by contrast, include the failure to un-derstand patients’ or families’ per-spectives, poor delivery of information,devaluation of patient or family views,and provider unavailability.83–86

The pediatrician who appropriately in-corporates patient- and family-centeredcare concepts in patient encounterswill, by necessity, spend additional timewith the child and the supportingfamily. This time has value because itwill eventually improve care and pre-vent unnecessary costs in the future.Consequently, payment for the time spentwith a family should be adequate, andpaid to the physician without undueadministrative complexities.

BENEFITS OF PATIENT- ANDFAMILY-CENTERED CARE FORPEDIATRICIANS

Given the documented benefits, pedi-atricians who practice patient- andfamily-centered care may experiencethe following benefits:

� A stronger alliance with the familyin promoting each child’s healthand development.87

� Improved clinical decision-makingbased on better information andcollaborative processes.

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� Improved follow-through when theplan of care is developed collabo-ratively with families.

� Greater understanding of thefamily’s strengths and caregivingcapacities.

� More efficient and effective useof professional time, including theuse of patient- and family-centeredrounds.

� More efficient use of health careresources (eg, more care managedat home, decrease in unnecessaryhospitalizations and emergency de-partment visits, more effective useof preventive care).

� Improved communication amongmembers of the health careteam.

� A more competitive position in thehealth care marketplace.

� An enhanced learning environmentfor future pediatricians and otherprofessionals in training.88

� A practice environment that enhan-ces professional satisfaction inboth inpatient and outpatient prac-tice.

� Greater child and family satisfac-tion with their health care.

� Improved patient safety from col-laboration with informed and en-gaged patients and families.

� An opportunity to learn from fam-ilies how care systems really workand not just how they are intendedto work.

� A possible decrease in the numberof legal claims, claim severity, andlegal expenses.62,85

RECOMMENDATIONS

1. As leaders of the child’s medicalhome, pediatricians should ensurethat true collaborative relation-ships with patients and familiesas defined in the core concepts

of patient- and family-centered careare incorporated into all aspects oftheir professional practice.89 Thepatient and family are integralmembers of the health care team.They should participate in the de-velopment of the health care planand have ownership of it.

2. Pediatricians should unequivocallyconvey respect for families’ uniqueinsights into and understanding oftheir child’s behavior and needs,should actively seek out theirobservations, and should appro-priately incorporate family prefer-ences into the care plan.x

3. In hospitals, conducting attendingphysician rounds (ie, patient pre-sentations and discussions) in thepatients’ rooms with nursing staffand the family present should bestandard practice.3–6

4. Parents or guardians should beoffered the option to be presentwith their child during medicalprocedures and offered supportbefore, during, and after the pro-cedure.

5. Families should be strongly en-couraged to be present duringhospitalization of their child, andpediatricians should advocate forimproved employer recognition ofthe importance of family pres-ence during a child’s illness.

6. Pediatricians should share infor-mation with and promote the ac-tive participation of all children,

including children with disabil-ities, if capable, in the manage-ment and direction of their ownhealth care. The adolescent’s andyoung adult’s capacity for indepen-dent decision-making and right toprivacy should be respected.

7. In collaboration with patients,families, and other health careprofessionals, pediatricians shouldmodify systems of care, processesof care, and patient flow as neededto improve the patient’s and fam-ily’s experience of care.

8. Pediatricians should share medi-cal information with children andfamilies in ways that are usefuland affirming. This informationshould be complete, honest, andunbiased.

9. Pediatricians should encourageand facilitate peer-to-peer sup-port and networking, particularlywith children and families of sim-ilar cultural and linguistic back-grounds or with the same typeof medical condition.

10. Pediatricians should collaboratewith patients and families andother health care providers to en-sure a transition to good-quality,developmentally appropriate, pa-tient- and family-centered adulthealth care services.

11. In developing job descriptions, hiringstaff, and designing performance-appraisal processes, pediatri-cians should make explicit theexpectation of collaboration withpatients and families and otherpatient- and family-centered be-haviors.

12. Pediatricians should create a vari-ety of ways for children and fam-ilies to serve as advisors for andleaders of office, clinic, hospital, in-stitutional, and community orga-nizations involved with pediatrichealth care.7,8

xIt is the responsibility of the physician to makemedical care decisions, but they should be madeafter such consultation has been made with thepatient and the family. It is the patient’s andfamily’s responsibility to comply with the agreedupon medical care decisions. If there are majordifferences of opinion between physicians andfamilies in the care of the child that cannot beresolved with consultation and further medicalopinions, consultation with an ethics committeewould be prudent. In rare and extremecircumstances, when the health and the life of thechild is in jeopardy, appropriate legal action mayneed to be taken.

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13. The design of health care facilitiesshould promote the philosophyof patient- and family-centeredcare, such as including single-room care, family sleeping areas,and availability of kitchen andlaundry areas and other areassupportive of families. Pediatri-cians should advocate for chil-dren and families to participatein design planning of health carefacilities.90–93

14. Education and training in patient-and family-centered care shouldbe provided to all trainees, stu-dents, and residents as well asstaff members.

15. Patients and families should havea voice in shaping the researchagenda, and they should be invitedto collaborate in pediatric researchprograms. This should include de-termining how children and fami-lies participate in research anddeciding how research findingswill be shared with childrenand families.9

16. Pediatricians should advocate forand participate in research onoutcomes and implementation ofpatient- and family-centered carein all venues of care.

17. Incorporating the patient- andfamily-centered care conceptsdescribed in this statement intopatient encounters requires addi-tional face-to-face and coordina-tion time by pediatricians. Thistime has value and is an invest-ment in improved care, leading tobetter outcomes and preventionof unnecessary costs in the fu-ture. Payment for time spent withthe family should be appropriateand paid without undue adminis-trative complexities.

LEAD AUTHORSJerrold M. Eichner, MDBeverley H. Johnson

COMMITTEE ON HOSPITAL CARE,2010-2011Jerrold M. Eichner, MD, ChairpersonJames M. Betts, MD

Maribeth B. Chitkara, MDJennifer A. Jewell, MDPatricia S. Lye, MDLaura J. Mirkinson, MD

LIAISONSChris Brown, MS, CCLS – Child Life CouncilKurt Heiss, MD – Section on SurgeryLynne Lostocco, RN, MSN – National Associ-ation of Children’s Hospitals and RelatedInstitutionsRichard A. Salerno, MD, MS – Section on CriticalCare

CONSULTANTJack M. Percelay, MD, MPH –The Joint Com-mission, Hospital Accreditation Professionaland Technical Advisory Committee

STAFFS. Niccole Alexander, MPP

INSTITUTE FOR PATIENT- AND FAMILY-CENTERED CAREBeverley H. Johnson, PresidentMarie Abraham, MAElizabeth Ahmann, ScD, RNElizabeth Crocker, MEdNancy DiVenereGail MacKean, PhDWilliam E. Schwab, MDTerri Shelton, PhD

REFERENCES

1. American Academy of Pediatrics. Familypediatrics. Report of the Task Force on theFamily. Pediatrics. 2003;111(suppl 2):1539–1587

2. Tarini BA, Christakis DA, Lozano P. Towardfamily-centered inpatient medical care: therole of parents as participants in medicaldecisions. J Pediatr. 2007;151(6):690–695, e1

3. Landry MA, Lafrenaye S, Roy MC, Cyr C. Arandomized, controlled trial of bedsideversus conference-room case presentationin a pediatric intensive care unit. Pediat-rics. 2007;120(2):275–280

4. Muething SE, Kotagal UR, Schoettker PJ,Gonzalez del Rey J, DeWitt TG. Family-centered bedside rounds: a new approachto patient care and teaching. Pediatrics.2007;119(4):829–832

5. Simmons JM. A fundamental shift: family-centered rounds in an academic medicalcenter. Hospitalist. 2006;10:45–46

6. Rosen P, Stenger E, Bochkoris M, HannonMJ, Kwoh CK. Family-centered multidisciplinary

rounds enhance the team approach inpediatrics. Pediatrics. 2009;123(4). Avail-able at: www.pediatrics.org/cgi/content/full/123/4/e603

7. Conway J, Johnson BH, Edgman-Levitan S,et al. Partnering with patients and familiesto design a patient- and family-centeredhealth care system: a roadmap for thefuture—a work in progress. Bethesda, MD:Institute for Family-Centered Care and In-stitute for Healthcare Improvement; 2006.Available at: http://www.ipfcc.org/pdf/Roadmap.pdf. Accessed July 19, 2010

8. Johnson B, Abraham M, Conway J, et al.Partnering With Patients and Families toDesign a Patient- and Family-CenteredHealth Care System: Recommendationsand Promising Practices. Bethesda, MD:Institute for Family-Centered Care; 2008

9. National Working Group on Evidence-BasedHealth Care. The role of the patient/consumer in establishing a dynamic clini-cal research continuum: models of patient/consumer inclusion. August 2008. Available

at: http://www.evidencebasedhealthcare.org/download.cfm?DownloadFile=9DE777DF-1372-4D20-C85E4F48846514FD. Accessed July 19,2010

10. Johnson BH. Family-centered care: fourdecades of progress. Fam Syst Health.2000;18(2):133–156

11. Shelton TL, Jeppson ES, Johnson BH. Family-Centered Care for Children With SpecialHealth Care Needs. Bethesda, MD: Associa-tion for the Care of Children’s Health; 1987

12. Shelton TL, Stepanek JS. Family-CenteredCare for Children Needing Specialized Healthand Developmental Services. Bethesda, MD:Association for the Care of Children’s Health;1994

13. Family Voices. Family-centered care self-assessment tool: provider tool. Albuquerque,NM: Family Voices; 2008. Available at: http://www.familyvoices.org/pub/projects/fcca_Pro-viderTool.pdf. Accessed July 19, 2010

14. Roberston J. Young Children in Hospitals.New York, NY: Basic Books; 1959

400 FROM THE AMERICAN ACADEMY OF PEDIATRICS by guest on July 11, 2018www.aappublications.org/newsDownloaded from

Page 8: POLICYSTATEMENT Patient-andFamily ...pediatrics.aappublications.org/content/pediatrics/129/2/...POLICYSTATEMENT Patient-andFamily-CenteredCareandthePediatrician’s Role abstract Drawing

15. Plank EN. Working With Children in Hospi-tals: A Guide for the Professional Team.Cleveland, OH: The Press of Western Re-serve University; 1962

16. Haller JA, ed. The Hospitalized Child and HisFamily. Baltimore, MD: The Johns HopkinsPress; 1967

17. Skipper JK, Leonard RC, Rhymes J. Childhospitalization and social interaction: anexperimental study of mother’s feelings ofstress, adaptation, and satisfaction. MedCare. 1968;6:496–506

18. Levine MI. Children in hospitals. A pedia-trician’s view. Pediatr Ann. 1972;1:6–9

19. Hardgrove CB, Dawson RB. Parents andChildren in the Hospital: The Family’s Rolein Pediatrics. Boston, MA: Little Brown &Co; 1972

20. Lindheim R, Glaser HH, Coffin C. ChangingHospital Environments. Cambridge, MA:Harvard University Press; 1972

21. Klaus MH, Kennell JH. Maternal-InfantBonding: The Impact of Early Separationor Loss on Family Development. St Louis,MO: Mosby-Year Book Inc; 1976

22. Robinson GC, Clarke HF. The Hospital Careof Children: A Review of ContemporaryIssues. New York, NY: Oxford UniversityPress; 1980

23. Klaus MH, Kennell JH. Parent-Infant Bonding.St Louis, MO: Mosby-Year Book Inc; 1982

24. Thompson RH. Psychosocial Research onPediatric Hospitalization and Health Care: AReview of the Literature. Springfield, IL:Charles C. Thomas; 1985

25. Medical Home Initiatives for Children WithSpecial Needs Project Advisory Committee.American Academy of Pediatrics. The medi-cal home. Pediatrics. 2002;110(1 pt 1):184–186

26. Family voices. Available at: http://www.familyvoices.org/. Accessed July 19, 2010

27. Institute of Medicine, Committee on QualityHealth Care in America. Crossing theQuality Chasm: A New Health System forthe 21st Century. Washington, DC: NationalAcademies Press; 2001

28. American Academy of Pediatrics. Commit-tee on Early Childhood and Adoption, andDependent Care. The pediatrician’s role infamily support programs. Committee onEarly Childhood and Adoption, and De-pendent Care. Pediatrics. 2001;107(1):195–197

29. Wilson JM, ; American Academy of Pediat-rics Child Life Council and Committee onHospital Care. Child life services. Pediat-rics. 2006;118(4):1757–1763

30. American Academy of Pediatrics, MedicalHome Initiative for Children with Special

Needs Project Advisory Committee. PolicyStatement. Organizational principles to guideand define the child health care system and/or improve the health of all children. Pedi-atrics. 2004;113(suppl 5):1545–1547

31. Hodgson ES, Simpson L, Lannon CM, ;American Academy of Pediatrics SteeringCommittee on Quality Improvement andManagement; American Academy of Pedi-atrics Committee on Practice and Ambula-tory Medicine. Principles for the developmentand use of quality measures. Pediatrics.2008;121(2):411–418

32. Krug SE, Frush K, ; Committee on PediatricEmergency Medicine, American Academy ofPediatrics. Patient safety in the pediatricemergency care setting. Pediatrics. 2007;120(6):1367–1375

33. O’Malley P, Brown K, Mace SE, ; AmericanAcademy of Pediatrics Committee on Pedi-atric Emergency Medicine; American Col-lege of Emergency Physicians PediatricEmergency Medicine Committee. Patient-and family-centered care and the role ofthe emergency physician providing care toa child in the emergency department. Pe-diatrics. 2006;118(5):2242–2244

34. O’Malley PJ, Brown K, Krug SE, ; Committeeon Pediatric Emergency Medicine. Patient-and family-centered care of children in theemergency department. Pediatrics. 2008;122(2). Available at: www.pediatrics.org/cgi/content/full/122/2/e511

35. Duby JC, ; American Academy of PediatricsCouncil on Children With Disabilities. Roleof the medical home in family-centeredearly intervention services. Pediatrics. 2007;120(5):1153–1158

36. Fallat ME, Glover J, ; American Academy ofPediatrics, Committee on Bioethics. Pro-fessionalism in pediatrics: statement ofprinciples. Pediatrics. 2007;120(4):895–897

37. American Academy of Pediatrics, AmericanCollege of Obstetricians and Gynecologists.Guidelines for Perinatal Care. 6th ed.Washington, DC: American College ofObstetricians and Gynecologists; 2007

38. American Academy of Pediatrics. Sectionon home care. Parent Advisory Group.Available at: http://www.aap.org/sections/homecare/pag.cfm. Accessed July 19, 2010

39. Institute for Healthcare Improvement. Avail-able at: http://www.ihi.org/ihi. Accessed July19, 2010

40. National Initiative for Children’s HealthcareQuality. Available at: http://www.nichq.org/nichq. Accessed July 19, 2010

41. McKesson Quest for Quality Prize. Availableat: http://www.aha.org/aha/news-center/awards/quest-for-quality/index.html. AccessedJuly 19, 2010

42. American Hospital Association. Strategiesfor Leadership: Patient- and Family-CenteredCare. Chicago, IL: American Hospital Asso-ciation; 2004. Available at: http://www.aha.org/aha/issues/Communicating-With-Patients/pt-family-centered-care.html. Accessed July19, 2010

43. McGreevey M, ed. Patients as Partners:How to Involve Patients and Families inTheir Own Care. Oakbrook Terrace, IL: JointCommission Resources Inc; 2006

44. Pillow M, ed. Patients as Partners: Toolkitfor Implementing National Patient SafetyGoal #13. Oakbrook Terrace, IL: Joint Com-mission Resources Inc; 2007

45. National Patient Safety Foundation. Avail-able at: http://www.npsf.org. Accessed July19, 2010

46. The Joint Commission. Advancing EffectiveCommunication, Cultural Competence, andPatient-and Family-Centered Care: A Road-map for Hospitals. Available at: http://www.jointcommission.org/Advancing_Effective_Communication/. Accessed November 30,2011

47. Health Resources and Services Adminis-tration. National survey of children withspecial health care needs. Chartbook2005–2006. Available at: http://mchb.hrsa.gov/cshcn05/. Accessed July 19, 2010

48. Brousseau DC, Hoffmann RG, Nattinger AB,Flores G, Zhang Y, Gorelick M. Quality ofprimary care and subsequent pediatricemergency department utilization. Pediat-rics. 2007;119(6):1131–1138

49. LaRosa-Nash PA, Murphy JM. An approachto pediatric perioperative care. Parent-present induction. Nurs Clin North Am.1997;32(1):183–199

50. Blesch P, Fisher ML. The impact of parentalpresence on parental anxiety and satis-faction. AORN J. 1996;63(4):761–768

51. Wolfram RW, Turner ED. Effects of parentalpresence during children’s venipuncture.Acad Emerg Med. 1996;3(1):58–64

52. Powers KS, Rubenstein JS. Family presenceduring invasive procedures in the pediatricintensive care unit: a prospective study. ArchPediatr Adolesc Med. 1999;153(9):955–958

53. Dingeman RS, Mitchell EA, Meyer EC, CurleyMAQ. Parent presence during complex in-vasive procedures and cardiopulmonaryresuscitation: a systematic review of theliterature. Pediatrics. 2007;120(4):842–854

54. Fina DK, Lopas LJ, Stagnone JH, SantucciPR. Parent participation in the postanesthesiacare unit: fourteen years of progress atone hospital. J Perianesth Nurs. 1997;12(3):152–162

55. Wolfer J, Gaynard L, Goldberger J, Laidley LN,Thompson R. An experimental evaluation of

PEDIATRICS Volume 129, Number 2, February 2012 401

FROM THE AMERICAN ACADEMY OF PEDIATRICS

by guest on July 11, 2018www.aappublications.org/newsDownloaded from

Page 9: POLICYSTATEMENT Patient-andFamily ...pediatrics.aappublications.org/content/pediatrics/129/2/...POLICYSTATEMENT Patient-andFamily-CenteredCareandthePediatrician’s Role abstract Drawing

a model child life program. Child HealthCare. 1988;16(4):244–254

56. Singer GHS, Marquis J, Powers LK, et al. Amulti-site evaluation of parent to parentprograms for parents of children with dis-abilities. J Early Interv. 1999;22(3):217–229

57. Ainbinder JG, Blanchard LW, Singer GH,et al. A qualitative study of Parent to Parentsupport for parents of children with specialneeds. Consortium to evaluate Parent toParent. J Pediatr Psychol. 1998;23(2):99–109

58. Ireys HT, Chernoff R, DeVet KA, Kim Y. Ma-ternal outcomes of a randomized con-trolled trial of a community-based supportprogram for families of children withchronic illnesses. Arch Pediatr AdolescMed. 2001;155(7):771–777

59. Sodomka P. Patient- and family-centeredcare. In: The Patient- and Family CenteredCare: Good Values, Good Business Confer-ence; American College of Healthcare Exec-utives Conference; May 17–18, 2001; VirginiaBeach, VA

60. Tearing down the walls. Healthc Exec. 2005;1(5):2–6

61. Sodomka P, Scott HH, Lambert AM, Meeks BD.Patient and family centered care in an aca-demic medical center: informatics, partner-ships and future vision. In: Weaver CA, DelaneyCW, Weber P, Carr R, eds. Nursing and In-formatics for the 21st Century: An Inter-national Look at Practice, Trends and theFuture. Chicago, IL: Healthcare Information andManagement Systems Society; 2006:501–506

62. Patient- and Family-Centered Care 2007Benchmarking Project: Executive Summary.Oakbrook Terrace, IL: University HealthSystem Consortium; 2007

63. Institute of Medicine, Committee on QualityHealth Care in America. To Err is Human:Building a Safer Health System. Washington,DC: National Academies Press; 1999

64. Britto MT, Anderson JM, Kent WM, et al.Cincinnati Children’s Hospital Medical Cen-ter: transforming care for children andfamilies. Jt Comm J Qual Patient Saf. 2006;32(10):541–548

65. Cooley WC, McAllister JW. Building medicalhomes: improvement strategies in primarycare for children with special health careneeds. Pediatrics. 2004;113(suppl 5):1499–1506

66. Homer CJ, Klatka K, Romm D, et al. A re-view of the evidence for the medical homefor children with special health careneeds. Pediatrics. 2008;122(4). Availableat: www.pediatrics.org/cgi/content/full/122/4/e922

67. Ammentorp J, Mainz J, Sabroe S. Parents’priorities and satisfaction with acute pe-diatric care. Arch Pediatr Adolesc Med.2005;159(2):127–131

68. Dowling J, Vender J, Guilianelli S, Wang B. Amodel of family-centered care and satis-faction predictors: the Critical Care FamilyAssistance Program. Chest. 2005;128(suppl3):81S–92S

69. Griffin T, Abraham M. Transition to homefrom the newborn intensive care unit: ap-plying the principles of family-centeredcare to the discharge process. J PerinatNeonatal Nurs. 2006;20(3):243–249, quiz250–251

70. Malusky SK. A concept analysis of family-centered care in the NICU. Neonatal Netw.2005;24(6):25–32

71. Penticuff JH, Arheart KL. Effectivenessof an intervention to improve parent-professional collaboration in neonatal in-tensive care. J Perinat Neonatal Nurs. 2005;19(2):187–202

72. Van Riper M. Family-provider relationships andwell-being in families with preterm infants inthe NICU. Heart Lung. 2001;30(1):74–84

73. Johnston AM, Bullock CE, Graham JE, et al.Implementation and case-study resultsof potentially better practices for family-centered care: the family-centered caremap. Pediatrics. 2006;118(suppl 2):S108–S114

74. Heller R, McKlindon D. Families as “faculty”:parents educating caregivers about family-centered care. Pediatr Nurs. 1996;22(5):428–431

75. Widrick G, Whaley C, DiVenere N, VecchioneE, Swartz D, Stiffler D. The medical educa-tion project: an example of collaborationbetween parents and professionals. ChildHealth Care. 1991;20(2):93–100

76. Hemmelgarn AL, Dukes D. Emergency roomculture and the emotional support compo-nent of family-centered care. Child HealthCare. 2001;30(2):93–110

77. Solberg B. Wisconsin prenatal care co-ordination proves its worth. Case man-agement becomes Medicaid benefit. InsidePrev Care. 1996;2:1, 5–6

78. Forsythe P. New practices in the transi-tional care center improve outcomes forbabies and their families. J Perinatol. 1998;18(6 pt 2 suppl):S13–S17

79. Adnopoz J, Nagler S. Supporting HIV infec-ted children in their own families throughfamily-centered practice. In: Morton ES,Grigsby RK, eds. Advancing Family Preser-vation Practice. Newbury Park, CA: SagePublications; 1993:119–128

80. Vander Stoep A, Williams M, Jones R, GreenL, Trupin E. Families as full research part-ners: what’s in it for us? J Behav HealthServ Res. 1999;26(3):329–344

81. Williams M, Vander Stoep A, Green L, JonesR, Trupin E. King County Blended FundingProject pilot evaluation results. In: 12th

Annual Research Conference. A System of Carefor Children’s Mental Health: Expanding theResearch Base; February 22, 1999; Tampa, FL

82. Jones B, Fournier C, Moore JM. New levelsof collaboration. A family-driven, blended-funding, interagency service model thatworks. In: The National Association of StateDirectors of Special Education 65th AnnualConference and Business Meeting; Novem-ber 10, 2002; Portland, OR

83. Beckman HB, Markakis KM, Suchman AL,Frankel RM. The doctor-patient relationshipand malpractice. Lessons from plaintiffdepositions. Arch Intern Med. 1994;154(12):1365–1370

84. Levinson W. Doctor-patient communicationand medical malpractice: implications for pe-diatricians. Pediatr Ann. 1997;26(3):186–193

85. Boothman RC, Sedman A. The University ofMichigan model of transparency andeffects on litigation. In: Meeting of the Na-tional Association of Children’s Hospitaland Related Institutions; January 2005; NewOrleans, LA

86. Johnson B, Ford D, Abraham M. Collabo-rating with patients and their families.J Healthc Risk Manag. 2010;29(4):15–21

87. Holm KE, Patterson JM, Gurney JG. Parentalinvolvement and family-centered care inthe diagnostic and treatment phases ofchildhood cancer: results from a qualita-tive study. J Pediatr Oncol Nurs. 2003;20(6):301–313

88. Hanson JL, Randall VF. Advancing a partner-ship: patients, families, and medical educa-tors. Teach Learn Med. 2007;19(2):191–197

89. MacKean GL, Thurston WE, Scott CM. Bridg-ing the divide between families and healthprofessionals’ perspectives on family-centred care. Health Expect. 2005;8(1):74–85

90. Johnson BH, Abraham MR, Parrish RN. De-signing the neonatal intensive care unit foroptimal family involvement. Clin Perinatol.2004;31(2):353–382, ix

91. Ulrich R, Zimring C, Quan X, Joseph A. Therole of the physical environment in thehospital of the 21st century: a once-in-a-lifetime opportunity. Concord, CA: The Cen-ter for Health Design; 2004. Available at:http://www.nd.edu/∼nicudes/. AccessedNovember 30, 2011

92. White RD. Recommended standards fornewborn ICU design: report of the SeventhConsensus Conference on Newborn ICUDesign. Clearwater Beach, FL: 2007. Avail-able at: http://www.nd.edu/∼nicudes.Accessed July 19, 2010

93. White RD, Martin GI, eds. Design standardsand applications for the physical and sen-sory environment of the NICU. J Perinatol.2007;27(suppl 2):S1–S93

402 FROM THE AMERICAN ACADEMY OF PEDIATRICS by guest on July 11, 2018www.aappublications.org/newsDownloaded from

Page 10: POLICYSTATEMENT Patient-andFamily ...pediatrics.aappublications.org/content/pediatrics/129/2/...POLICYSTATEMENT Patient-andFamily-CenteredCareandthePediatrician’s Role abstract Drawing

RESOURCES

Als H, Lawhon G, Duffy FH, McAnulty GB, Gibes-Grossman R, Blickman JG. Individualized de-velopmental care for the very low-birth-weightpreterm infant. Medical and neurofunctionaleffects. JAMA. 1994;272(11):853–858

American Academy of Pediatrics Committee onPediatric Workforce. Culturally effective pedi-atric care: education and training issues. Pe-diatrics. 1999;103(1):167–170

Medical Home Initiatives for Children WithSpecial Needs Project Advisory Committee.American Academy of Pediatrics. The medicalhome. Pediatrics. 2002;110(1 pt 1):184–186

American Heart Association. 2005 AmericanHeart Association (AHA) Guidelines for Cardio-pulmonary Resuscitation (CPR) and EmergencyCardiovascular Care (ECC) of Pediatric andNeonatal Patients: Pediatric Advanced LifeSupport. Pediatrics. 2006;117(5):e1005–e1028

Antonelli RC, McAllister JW, Popp J. MakingCare Coordination a Critical Component of thePediatric Health System: A MultidisciplinaryFramework. New York, NYThe CommonwealthFund; 2009

Arango P. A parent’s perspective on family-centered care. J Dev Behav Pediatr. 1999;20(2):123–124

Barratt F, Wallis DN. Relatives in the re-suscitation room: their point of view. J AccidEmerg Med. 1998;15(2):109–111

Bouchner H, Vinci R, Waring C. Pediatric pro-cedures: do parents want to watch? Pediatrics.1989;84(5):907–909

Bauchner H, Vinci R, Bak S, Pearson C, CorwinMJ. Parents and procedures: a randomizedcontrolled trial. Pediatrics. 1996;98(5):861–867

Beckett P, Wynne B, Redmond S. Mother-babycare: a roadmap for success. J Family CenteredNurs. 1996;1(1):10–13

Blaylock BL. Patients and families as teachers:inspiring an empathic connection. Fam SystHealth. 2000;18(2):161–175

Blaylock BL, Ahmann E, Johnson BH. CreatingPatient and Family Faculty Programs. Bethesda,MD: Institute for Family-Centered Care; 2002

Boie ET, Moore GP, Brummett C, Nelson DR. Doparents want to be present during invasiveprocedures performed on their children in theemergency department? A survey of 400parents. Ann Emerg Med. 1999;34(1):70–74

Browne JV, Sanchez E, Langlois A, Smith S. Fromvisitation policies to family participationguidelines in the NICU: the experience of theColorado Consortium of Intensive Care Nurs-eries. Neonatal Paediatrics Child Health Nurs.2004;7(2):16–23

Center for Mental Health Services, Division ofKnowledge Development and Systems Change,Child, Adolescent and Family Branch. Systems

of Care: Promising Practices in Children’sMental Health: 1998 Series. Rockville, MD:Center for Mental Health Services, US De-partment of Health and Human Services; 1999

Cohen JJ. Moving from provider-centered towardfamily-centered care. Acad Med. 1999;74(4):425

Cooley WC. Family-centered care in pediatricpractice. In: Hoekelman RA, ed. Primary Pedi-atric Care. St Louis, MO: Mosby; 2001:712–714

Cooley WC, McAllister JW. Putting family-centered care into practice—a response tothe adaptive practice model. J Dev BehavPediatr. 1999;20(2):120–122

Davidson JE, Powers K, Hedayat KM, et al;American College of Critical Care Medicine TaskForce 2004-2005, Society of Critical Care Medi-cine. Clinical practice guidelines for support ofthe family in the patient-centered intensivecare unit: American College of Critical CareMedicine Task Force 2004-2005. Crit Care Med.2007;35(2):605–622

Eckle N, MacLean SL. Assessment of family-centered care policies and practices for pediat-ric patients in nine US emergency departments.J Emerg Nurs. 2001;27(3):238–245

Eichhorn DJ, Meyers TA, Guzzetta CE, et al.During invasive procedures and resuscitation:hearing the voice of the patient. Am J Nurs.2001;101(5):48–55

Giganti AW. Families in pediatric critical care:the best option. Pediatr Nurs. 1998;24(3):261–265

Green M, ed. Bright Futures: Guidelines forHealth Supervision of Infants, Children, andAdolescents. Arlington, VA: National Center forEducation in Maternal and Child Health; 1994

Haimi-Cohen Y, Amir J, Harel L, Straussberg R,Varsano Y. Parental presence during lumbarpuncture: anxiety and attitude toward theprocedure. Clin Pediatr (Phila). 1996;35(1):2–4

Hanson C, Strawser D. Family presence duringcardiopulmonary resuscitation: Foote Hospitalemergency department’s nine-year perspective.J Emerg Nurs. 1992;18(2):104–106

Hanson JL, Johnson BH, Jeppson ES, Thomas J,Hall JH. Hospitals Moving Forward With Family-Centered Care. Bethesda, MD: Institute forFamily-Centered Care; 1994

Hanson JL, Randall VF, Colston SS. Parentadvisors: enhancing services for young chil-dren with special needs. Infants Young Child.1999;12(1):17–25

Health Canada. Family-Centred Maternity andNewborn Intensive Care: National Guidelines.Ottawa, Ontario: Health Canada; 2000

Hirschoff A, ed. The Family as Patient CarePartners: Leveraging Family Involvement to Im-prove Quality, Safety, and Satisfaction. Wash-ington, DC: The Advisory Board Company; 2006

Hobbs SE, Sodomka PF. Developing partner-ships among patients, families, and staff at theMedical College of Georgia Hospital and Clinics.Jt Comm J Qual Improv. 2000;26(5):268–276

Homer CJ, Baron RJ. How to scale up primarycare transformation: what we know and whatwe need to know? J Gen Intern Med. 2010;25(6):625–629

Hostler SL. Family-Centered Care: An Approachto Implementation. Charlottesville, VA: KlugeChildren’s Rehabilitation Center; 1994

Hostler SL. Pediatric family-centered re-habilitation. J Head Trauma Rehabil. 1999;14(4):384–393

Institute for Family-Centered Care. Advancingthe Practice of Family-Centered Care in Pedi-atrics: Examining Policy, Program, Design, andPractice. Bethesda, MD: Institute for Family-Centered Care; 2001

Institute for Family-Centered Care. Family-centered care and managed care: are theycompatible? Adv Fam Centered Care. 1996;3(1):1–22

Institute for Family-Centered Care. Parents onRounds [videotape]. Bethesda, MD: Institute forFamily-Centered Care; 2001

Johnson BH. Family-centered care: four deca-des of progress. Fam Syst Health. 2000;18(2):137–156

Johnson BH, Abraham, MR. Partnering withPatients, Residents, and Families—A Resourcefor Leaders of Hospitals, Ambulatory CareSettings, and Long-Term Care Communities.Bethesda, MD: Institute for Patient- and Family-Centered Care; 2011.

Johnson BH, Schlucter J. Family-centered homehealth care. In: McConnell MS, Imaizumi SO,eds. Guidelines for Pediatric Home Health Care.Elk Grove Village, IL: American Academy of Pe-diatrics; 2002:59–69

Johnson BH, Thomas J, Williams K. WorkingWith Families to Enhance Emergency MedicalServices for Children. Washington, DC: Emer-gency Medical Services for Children NationalResource Center; 1997

Kaplan-Sanoff M, Brown TW, Zuckerman BS.Enhancing pediatric primary care for low-income families: cost lessons learned frompediatric pathways to success. Zero to Three.1997;6(Jun-July):34–36

Kaslow NJ, Collins MH, Loundy MR, Brown F,Hollins LD, Eckman J. Empirically validatedfamily interventions for pediatric psychology:sickle cell disease as an exemplar. J PediatrPsychol. 1997;22(2):213–227

Kazak AE, Penati B, Boyer BA, et al. A random-ized controlled prospective outcome study ofa psychological and pharmacological inter-vention protocol for procedural distress in

PEDIATRICS Volume 129, Number 2, February 2012 403

FROM THE AMERICAN ACADEMY OF PEDIATRICS

by guest on July 11, 2018www.aappublications.org/newsDownloaded from

Page 11: POLICYSTATEMENT Patient-andFamily ...pediatrics.aappublications.org/content/pediatrics/129/2/...POLICYSTATEMENT Patient-andFamily-CenteredCareandthePediatrician’s Role abstract Drawing

pediatric leukemia. J Pediatr Psychol. 1996;21(5):615–631

Kennell JH. The humane neonatal care initia-tive. Acta Paediatr. 1999;88(4):367–370

McCuskey Shepley M, Fournier MA, McDougalKW. Healthcare Environments for Children andTheir Families. Dubuque, IA: Kendall Hunt Pub-lishing Company; 1998

Meyers TA, Eichhorn DJ, Guzzetta CE, et al.Family presence during invasive proceduresand resuscitation. Am J Nurs. 2000;100(2):32–42, quiz 43

National Association of Emergency MedicalTechnicians. Family-Centered Pre-Hospital Care:Partnering With Families to Improve Care.Clinton, MS: National Association of EmergencyMedical Technicians; 2000

Powers PH, Goldstein C, Plank G, Thomas K,Conkright L. The value of patient- and family-centered care. Am J Nurs. 2000;100(5):84–88

Resnick MD, Bearman PS, Blum RW, et al.Protecting adolescents from harm. Findingsfrom the National Longitudinal Study onAdolescent Health. JAMA. 1997;278(10):823–832

Robinson JS, Schwartz ML, Magwene KS,Krengel SA, Tamburello D. The impact of feverhealth education on clinic utilization. Am J DisChild. 1989;143(6):698–704

Romer EF, Umbreit J. The effects of family-centered service coordination: a social val-idity study. J Early Interv. 1998;21(2):95–110

Rosenbaum P, King S, Law M, King G, Evans J.Family-centred service: a conceptual frame-work and research review. Phys Occup TherPediatr. 1998;18(1):1–20

Sacchetti A, Carraccio C, Leva E, Harris RH,Lichenstein R. Acceptance of family memberpresence during pediatric resuscitations inthe emergency department: effects of per-sonal experience. Pediatr Emerg Care. 2000;16(2):85–87

Santelli B, Poyadue FS, Young JL. The Parent toParent Handbook: Connecting Families of Chil-dren With Special Needs. Baltimore, MD: Paul H.Brookes Publishing; 2001

Shelton TL. Family-centered care: does it work?In: Hostler SL, ed. Family Centered Care: An Ap-proach to Implementation. Washington, DC: Bu-reau of Maternal and Child Health, US Departmentof Health and Human Services; 1994:411–453

Shelton TL. Family-centered care in pediatricpractice: when and how? J Dev Behav Pediatr.1999;20(2):117–119

Smith T, Conant Rees HL. Making family-centered care a reality. Semin Nurse Manag.2000;8(3):136–142

Society of Pediatric Nurses and AmericanNurses Association. Family-Centered Care: Put-ting it Into Action. The SPN/ANA Guide to Family-Centered Care. Washington, DC: AmericanNurses Publishing; 2003

Sweeney MM. The value of a family-centeredapproach in the NICU and PICU: one family’s

perspective. Pediatr Nurs. 1997;23(1):64–66

Tannen N. Families at the Center of the De-velopment of a System of Care. Washington, DC:Georgetown University Child Development Cen-ter; 1996

Trivette CM, Dunst CJ, Hamby D. Characteristicsand consequences of help-giving practices incontrasting human services programs. Am JCommunity Psychol. 1996;24(2):273–293

US Department of Health and Human Services.Healthy people 2010. Volume II: objectives forimproving health. 2nd ed. Available at: www.health.gov/healthypeople/Publication. AccessedJanuary 1, 2003

White R, Martin GI, Graven SN. Newborn in-tensive care unit design: scientific and practi-cal considerations. In: Avery GB, Fletcher MA,MacDonald MG, eds. Neonatology: Pathophysi-ology and Management of the Newborn. Phil-adelphia, PA: Lippincott Williams & Wilkins;1999:49–59

Wolfram RW, Turner ED, Philput C. Effects ofparental presence during young children’s ve-nipuncture. Pediatr Emerg Care. 1997;13(5):325–328

Ziring PR, Brazdziunas D, Cooley WC, et al;American Academy of Pediatrics. Committee onChildren With Disabilities. Care coordination:integrating health and related systems of carefor children with special health care needs.Pediatrics. 1999;104(4 pt 1):978–981

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