Chapter 42 Family-Centered Care
Speaking Intelligently
Family-centered care has been defined as “an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health-care patients, families, and providers.”1 It means care for a person—not a condition. It means care for a person with a family, culture, and goals—a person whose family should be allowed to actively participate whenever possible and desired by the patient. You will know family-centered care when you see it.
Medical Knowledge and Patient Care
Definition and Rationale
Provision of family-centered care carries particular importance in pediatrics because of most children’s dependence on family members. Most young children cannot provide accurate medical, family, or social histories. Most cannot drive themselves to the doctor, take medicines, convince their parents to quit smoking, or avoid abusive situations. The American Academy of Pediatrics2 recognizes that pediatricians must provide family-centered care to achieve ideal clinical outcomes.
Scope
Although this chapter focuses on hospitalized children, family-centered care should be provided to patients of all ages in all contexts. This approach requires discussion of such “nonmedical” issues as transportation, parental employment, and family dynamics. These issues are generally addressed as outpatients but may also carry importance during a hospital admission. Families generally want to be involved in the inpatient plan so they will follow it as outpatients. Family members may even provide direct care during the hospitalization. In one pediatric cardiovascular center, parents of children undergoing cardiac surgery provide “nursing care” as early as the first postoperative day; outcomes have been excellent and families highly satisfied.3
Parental Expectations
What do families want from family-centered care? Most want good communication and information sharing. Parents specifically do not wish to request information—they want providers to offer it, both verbally and in writing.4 They want providers to be open to flexibility and negotiation, not paternalistic, including allowing them to be present during procedures performed on their child.5 However, parents vary in the extent to which they wish to participate in hands-on care6; recognition of such variations represents a key aspect of family-centered care. Adolescents represent a special population in pediatrics, and their autonomy should be considered.
Cultural Competence
Care cannot be family-centered without cultural competence. Culturally competent providers “demonstrate behaviors, attitudes, policies, and structures that allow them to work cross-culturally.”7 Cultural competence requires flexibility to present information differently to different families. The increasing proportion of minority populations in the United States renders cultural competence more complex and more important. Cultural competence in health care may help address the significant health-care disparities among minority populations and is an important component of patient safety.8
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