Evidence for Family-Centered Care for Children With Special Health Care Needs: A Systematic Review

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<ul><li><p>Catanarl, M</p><p>l Hoicamereck</p><p>ld a</p><p>9, 2</p><p>the activity that constitutes FCC.</p><p>2010. We also reviewed articles obtained through related refer-</p><p>systems of care, family functioning, and family impact/cost.</p><p>CONCLUSIONS: The available evidence suggests that FCC is</p><p>care needs is associated with improved health and</p><p>l-ewell-being, improved satisfaction, greater efficiency,improved access, better communication, better transi-tion services, and other positive outcomes.</p><p>CHILDREN WITH SPECIAL health care needs (CSHCN)are those with chronic physical, developmental, behav-ioral, or emotional conditions that require health andrelated services of a type or amount beyond that requiredof children generally.1 Although sometimes considered,we did not include the at-risk population in our study. Anestimated 12.8% of the US child population, or over 9million children, are CSHCN.2</p><p>Efforts to incorporate family-centered principles intocare for CSHCN have been underway since 1987, whenthe Surgeon General called for family-centered,</p><p>objectives for CSHCN. These core objectives form thebasis of thework of state Title V programs and are reflectedin the Nations Healthy People 2010 Objectives.3 The FCCobjective states that families of children with specialhealth care needs will partner in decision making at alllevels, and will be satisfied with the services they receive.3</p><p>MCHB further delineates the principles of FCC, includingthe following: families and professionals working together;respect for the skills and expertise brought to the relation-ship, trust, and open and objective communication; jointdecision making; and a willingness to negotiate.4 On thebasis of the partnership, MCHB lists activities that charac-terize FCC as follows: acknowledge the family as theconstant in a childs life, build on family strengths, supportthe child in participating, honor diversity, recognize theimportance of community-based services, promote anACences and through recommendations from key informants. Foursets of terms were used to search, including FCC, child/adoles-cent, children with special health care needs (CSHCN, definedbroadly or by condition), and a relevant outcome.RESULTS: Twenty-four studies met the review criteria. Eightwere cross-sectional studies from the National Survey of Chil-dren With Special Health Care Needs, and 7 were reports ofrandomized, controlled trials. Of the 24 articles reviewed,13 examined populations of CSHCN or similar populations, 6</p><p>WHATS NEW</p><p>In a review of the published literature, we found thatfamily-centered care for children with special healthCADEMIC PEDIATRICSopyright 2011 by Academic Pediatric Association 136KEYWORDS: children with special health care needs; family-centered care</p><p>ACADEMIC PEDIATRICS 2011;11:136143</p><p>community-based, coordinated care for children withspecial health care needs and their families. The Maternaand Child Health Bureau (MCHB) endorses familycentered care (FCC) as a part its integrated set of corassociated with improved outcomes for CSHCN. With positivefindings for most of the studies reviewed here and the compel-ling arguments for FCC, we recommend the use of this approachby individuals and organizations.METHODS: We found and reviewed articles from the medical,nursing, psychology, and sociology literature spanning 1986 to</p><p>There was little available evidence, however, for some outcomes,including cost and transition.Evidence for Family-Centered</p><p>Health Care Needs: A SystemKaren A. Kuhlthau, PhD; Sheila Bloom,MS; JeDiane Romm, PhD; Kirsten Klatka, MSW; ChPaul W. Newacheck, DrPH; James M. Perrin</p><p>From theCenter for Child andAdolescent Health Policy, MassGeneraand Perrin; and Ms Bloom, Ms Knapp, and Ms Klatka); Harvard MedNational Initiative for Child Healthcare Quality, Boston, Mass (Dr HoPediatrics, University of California, San Francisco, Calif (Dr NewachThe authors have no conflicts of interest to disclose.Address correspondence to Karen A. Kuhlthau, PhD, Center for ChiMassachusetts 02114 (e-mail: kkuhlthau@partners.org).Received for publication December 11, 2008; accepted December 2</p><p>ABSTRACT</p><p>OBJECTIVE: Family-centered care (FCC) has received wide-spread endorsement for use in care in the United States. Inthis study, we conducted a systematic review of evidence forFCC focusing specifically on family-provider partnership asare for Children With Special</p><p>ic Reviewne VanCleave,MD; Alixandra A. Knapp,MS;es J. Homer, MD, MPH;D</p><p>spital for Children, Boston,Mass (Drs Kuhlthau, VanCleave, Romm,l School, Boston, Mass (Drs Kuhlthau, Van Cleave, and Perrin); the); and the Institute for Health Policy Studies and Department of)</p><p>nd Adolescent Health Policy, 50 Staniford St, Ste 901, Boston,</p><p>010.</p><p>examined children with asthma, and the remaining studiedchildren with other specific conditions. We found positive associ-ations of FCC with improvements in efficient use of services,health status, satisfaction, access to care, communication,Volume 11, Number 2MarchApril 2011</p></li><li><p>assess systems of care for CSHCN by the US MCHB, we</p><p>criteria as those identified through the search engines.included only US-based evidence in this review.</p><p>ORGANIZATION OF REVIEWDefinitions of FCC include a variety of specific activities.</p><p>We used FCC-related statements by theMCHB3,4 andAAP,5</p><p>input of the project advisory committee (comprisingCSHCNresearchers, familymembers, and health care providers), andinput fromreviewers to identify thefamily-provider partner-ship as our functional definition of FCC for this review. Thisdecision parallels the operationalization of FCC in theNational Survey of Childrenwith Special Health Care Needs(NSCSHCN). To be included, articles needed to mentionFCC or FPP, and FCC activities needed to include FPP.Outcomes included care processes and satisfaction as wellas more traditional outcomes, such as health status. Weincluded the following: health (broadly defined), satisfaction,efficient use of health care resources, access to care, commu-nication, system improvements, transition to adulthood,family functioning, financial impact, and cost.We used 4 search engines to search medical, nursing,</p><p>and social science literatures: Medline (medical), CINAHL(nursing and allied health), PSYCINFO (psychology), andSSCI (sociology). We searched these databases usingdifferent combinations of 4 terms. Each of these searchesincluded FCC/FPP, child/adolescent, CSHCN (definedbroadly or using a specific condition), and an outcome(Table 1). Specific conditions are listed in Table 1. Subse-quent searches combined each set of terms in the searchesindividual and developmental approach, encourage family-to-family/peer support, develop family-centered policiesand practices, and celebrate successes.FCC has been endorsed more broadly for all children</p><p>and individuals. The American Academy of Pediatrics(AAP) recommends FCC care in various settings.5 OtherAAP policy statements support FCC as well; most impor-tantly, FCC is viewed as a primary component of themedical home.6 The Institute for Family-Centered Care,which also endorses FCC in various settings, lists thefollowing as core concepts that should exist between fami-lies and professionals: dignity and respect, informationsharing, participation, and collaboration.7 The consider-ation of family-centered rather than patient-centered careis a hallmark of the pediatric medical home.8</p><p>Although many groups endorse FCC, no one has con-ducted a systematic review of the literature assessingwhether providing FCC improves patient and familyoutcomes. We examined the evidence base for FCC todetermine its relationship to key outcomes for childrenand families. Specifically, we sought to determine theextent to which family-provider partnership (FPP) is asso-ciated with improvements for a variety of outcomes. Thiseffort is part of a larger project that examines the evidencebase for each MCHB core objective and for an overallcomprehensive, organized, accessible system of care forCSHCN.9 Because this review was a part of an effort to</p><p>ACADEMIC PEDIATRICSwith an and. In our search, we identified articles thatexamined FCC but did not examine FPP; these articlesWe included articles that were of sufficiently high quality,above a score of 12 using the metric of Downs and Black.10</p><p>One author completed the Downs and Black checklist foreach article. Downs and Black created a checklist thatprovides an overall score for the study quality that is appro-priate for assessing both randomized and nonrandomizedstudies.</p><p>RESULTSThe initial searches yielded 4886 articles that met the</p><p>search criteria and had abstracts, 2828 of which were basedin the United States. From this list, 2 authors reviewed alltitles and/or abstracts. They then identified 98 articles toreview in full. We included 24 in this review. These articlesmet the search criteria and the quality score criterion. Sevenof the articles were based on randomized, controlled trials(RCTs), 11 were based on cross-sectional associationswith no intervention, and the rest examined interventionswith controls or before-and-after comparisons. Two inter-ventions resulted in more than one article. Eight articleswere based on analyses of the NS-CSHCN and used similarmeasures of FCC with a variety of outcomes. Six articleswere published before the year 2000. The articles identifiedCSHCN in different ways, with 13 articles looking atCSHCN, children with disabilities, and/or children withmultiple chronic conditions; 6 articles examining popula-tions of children with asthma; and 5 examining otherspecific chronic conditions. The most commonly foundoutcomes were health, mental health, and/or well-being ofpatients and family members (n 11), satisfaction (n 7), efficient use of resources (n 7), and access (n 7).were subsequently excluded. For example, an article wherethe FCC activity was having parents serve as advisors orcare providers would not be included. We included onlystudies that used quantitative methods to evaluate an inter-vention to promote FCC or studies that examined associa-tions between FCC and an outcome. We also limited oursearch to studies of US populations, studies with abstractsin the search engines, and studies that were published inEnglish between January 1, 1986, and May 31, 2010.Two authors independently reviewed titles and abstracts</p><p>and, after discussion, retrieved potentially relevant articlesin their entirety. Specifically, if both authors thought that anarticle should be included or excluded (in the set of articlesto be fully reviewed), then that was the final decision. If the2 authors disagreed, a third reviewer was included to helpresolve the differences. Where there differences remained,we examined the full article. The 3 authors then screenedthe full articles for eligibility criteria and study relevanceand reached a consensus about which articles to include.Given that our search strategy may have inadvertentlymissed relevant articles, we additionally included articlesin our review if they were recommended by expertcolleagues or identified through the citations of relevantarticles. These articles needed to meet the same inclusion</p><p>EVIDENCE FOR FAMILY-CENTERED CARE 137We discuss findings by outcomes. We then summarizeall of the findings from the NS-CSHCN. In discussing</p></li><li><p>with fewer missed school days.18</p><p>Table 1. General Search Terms</p><p>Child/Children</p><p> Child Children Adolescent</p><p>Children With Special Health Care Needs (CSHCN)</p><p> Disabled children Disabled Developmental disabilities Chronic disease Chronic conditions Special needs Special health care needs Activities of daily living Activity limitation Specific conditions*</p><p>Family-Centered Care</p><p> Professional patient relations Family-centered care (family-centered nursing) Patient-centered care Nurse-patient relations Physician-patient relations Professional patient relations Patient participation Shared decision making Physician-patient communication Family- and youth-driven care Consumer-driven care Family advisor group Consumer advisor group Leadership Family leadership Consumer leadership</p><p>Outcomes</p><p> Quality of health care health Health status, (health behavior, health knowledge attitudeand practice)</p><p> Family health Mental health Patient satisfaction Health policy Health services/utilization Accessibility Family financial burden Cost/expenditure empowerment uncertainty Organizational efficiency Health system improvement Delivery of health care Child is decision maker Decision making Quality of life Mental health Mental health services Health transition Behavior/behavior disorders, child/adolescent development,mortality</p><p> Child welfare Maternal welfare Hospitalized, parent-child relationship Health insurance*Specific conditions include: attention-deficit and disruptive behavior</p><p>disorders, attention-deficit disorder with hyperactivity, cerebral palsy,</p><p>asthma,human immunodeficiencyvirus (HIV-1,HIV-2), acquired immu-</p><p>nodeficiency syndrome (AIDS), epilepsy (subtypes myoclonic, partial,</p><p>absence, frontal lobe, rolandic, temporal lobe),heartdefects, congenital,</p><p>diabetes mellitus, hemophilia A, hemophilia B, spina bifida occulta,</p><p>developmental disabilities, mental retardation, sickle-cell anemia, juve-</p><p>nile rheumatoid arthritis, cancer/neoplasms, Down syndrome, trisomy</p><p>21, cystic fibrosis, low birth weight, preterm birth, and transplantation.</p><p>138 KUHLTHAU ET ALMangione-Smith and colleagues showed higher quality-of-life scores and higher asthma-specific quality of life.17</p><p>A family-centered, school-based behavioral interventionfor children with inattentive and disruptive behavior prob-lems also showed FCC activity was associated withimproved child health status, with 3 of 21 symptom severitythe results, we give greater weight to RCTs and other inter-vention studies over purely associational studies. Withineach of these groups, we prioritize the discussion of articleson the basis of broad populations of CSHCN over thosebased on specific chronic conditions. Table 2 summarizescharacteristics of the selected studies.</p><p>EVIDENCE BY ENDPOINT</p><p>HEALTH, MENTAL HEALTH, AND WELL-BEING</p><p>FourRCTs examined thehealth statusof the child/youth orparent. Three of these 4 articles found some health improve-ment of the intervention. Stein and Jessop investigateda program of comprehensive health care for inner-city chil-drenwith chronic conditions that includedamultidisciplinaryteam that helped involve families in management and deci-sion making. Researchers found that the intervention grouphad better personal adjustment scale scores, a measure ofpsychological functioning after intervention with somedifferences in the findings depending on the time frame.11</p><p>Other RCTs examined populations with specific conditions.A RCT conducted by Guendelman and colleagues used theInternet to facilitate family-focused nurse-family communi-cation in families with children with asthma. This studyfound that among other outcomes, intervention familieshad significantly fewer peak flow readings in the yellow orred zone than the comparison group.12 Among childrenwith traumatic brain injury...</p></li></ul>

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