Evidence for family-centered care for children with special health care needs: a systematic review. 2011

Karen A Kuhlthau, and Sheila Bloom, and Jeanne Van Cleave, and Alixandra A Knapp, and Diane Romm, and Kirsten Klatka, and Charles J Homer, and Paul W Newacheck, and James M Perrin
Child and Adolescent Health Policy, MassGeneral Hospital for Children, Boston, Mass., USA. kkuhlthau@partners.org

OBJECTIVE Family-centered care (FCC) has received widespread endorsement for use in care in the United States. In this study, we conducted a systematic review of evidence for FCC focusing specifically on family-provider partnership as the activity that constitutes FCC. METHODS We found and reviewed articles from the medical, nursing, psychology, and sociology literature spanning 1986 to 2010. We also reviewed articles obtained through related references and through recommendations from key informants. Four sets of terms were used to search, including FCC, child/adolescent, children with special health care needs (CSHCN, defined broadly or by condition), and a relevant outcome. RESULTS Twenty-four studies met the review criteria. Eight were cross-sectional studies from the National Survey of Children With Special Health Care Needs, and 7 were reports of randomized, controlled trials. Of the 24 articles reviewed, 13 examined populations of CSHCN or similar populations, 6 examined children with asthma, and the remaining studied children with other specific conditions. We found positive associations of FCC with improvements in efficient use of services, health status, satisfaction, access to care, communication, systems of care, family functioning, and family impact/cost. There was little available evidence, however, for some outcomes, including cost and transition. CONCLUSIONS The available evidence suggests that FCC is associated with improved outcomes for CSHCN. With positive findings for most of the studies reviewed here and the compelling arguments for FCC, we recommend the use of this approach by individuals and organizations.

UI MeSH Term Description Entries
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D002669 Child Welfare Organized efforts by communities or organizations to improve the health and well-being of the child. Adolescent Welfare,Welfare, Adolescent,Welfare, Child
D005192 Family Health The health status of the family as a unit including the impact of the health of one member of the family on the family as a unit and on individual family members; also, the impact of family organization or disorganization on the health status of its members. Health, Family
D006301 Health Services Needs and Demand Health services required by a population or community as well as the health services that the population or community is able and willing to pay for. Health Services Needs,Needs,Needs and Demand, Health Services,Target Population,Health Services Need,Need, Health Services,Needs, Health Services,Population, Target,Populations, Target,Target Populations
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D018802 Patient-Centered Care Design of patient care wherein institutional resources and personnel are organized around patients rather than around specialized departments. (From Hospitals 1993 Feb 5;67(3):14) Nursing, Patient-Centered,Patient-Centered Nursing,Patient-Focused Care,Person-Centered Care,Medical Home,Care, Patient-Centered,Care, Patient-Focused,Care, Person-Centered,Cares, Person-Centered,Home, Medical,Homes, Medical,Medical Homes,Nursing, Patient Centered,Patient Centered Care,Patient Centered Nursing,Patient Focused Care,Person Centered Care,Person-Centered Cares
D019988 Disabled Children Children with mental or physical disabilities that interfere with usual activities of daily living and that may require accommodation or intervention. Child, Disabled,Children with Disabilities,Children, Disabled,Handicapped Children,Children with Disability,Children, Handicapped,Disability, Children with,Disabled Child

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