Family-centered care is an approach to the planning, delivery, and evaluation of health care whose cornerstone is active participation between families and professionals. Family-centered care recognizes that families are the ultimate decision makers for their children, with children gradually taking on more and more of this decision-making themselves.
When care is family-centered, services not only meet the physical, emotional, developmental, and social needs of children, but also support the family’s relationship with the child’s health care providers and recognize the family’s customs and values. When care is truly family-centered, therefore, the provider:
- Spends enough time with the family
- Listens carefully to the parents
- Makes the parent feel like a partner in the child’s care
- Is sensitive to the family’s values and customs
- Provides the specific information that the parent needs.
Impact on Families
Juvenile arthritis does more than cause aches and pains in the person who has it. The whole family is impacted by the disease in a variety of ways, including:
- Financial burden
- Time spent providing care to the child
- Impact on parent’s employment
- Missed school days for the child
- The use of or need for prescription medication
- The use of or need for more medical care, mental health services, or education services than other children of the same age
- The use of or need for treatment or counseling for an emotional, developmental, or behavioral problem
- Limitation in the child’s ability to do the things most children of the same age do; or
- The use of or need for special therapy, such as physical, occupational, or speech therapy.
Critical Indicators for Measuring Success in Achieving the National Agenda
The National Agenda for Children with Special Health Care Needs, developed by the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA), builds on past experiences and success to assure that policies and programs are in place to guarantee that:
- children have access to quality health care services are coordinated
- providers are adequately trained
- financing issues are equitably addressed
- families play a pivotal role in how services are provided to their children
- children grow up healthy and ready to work.
Core Outcomes to be Achieved
- All children with special health care needs will receive coordinated ongoing comprehensive care within a medical home.
- All families of children with special health care needs will have adequate private and/or public insurance to pay for the services they need.
- All children will be screened early and continuously for special health care needs.
- Services for children with special health care needs and their families will be organized in ways that families can use them easily.
- Families of children with special health care needs will partner in decision making at all levels, and will be satisfied with the services they receive.
- All youth with special health care needs will receive the services necessary to make appropriate transitions to adult health care, work, and independence.
A Call for Action
The Maternal and Child Health Bureau (MCHB) is once again asking partners to join a common effort to develop and improve community-based systems of care for children with special health care needs and their families. The MCHB is asking families to be knowledgeable and effective users of health and related services. Families, as the constants in their children's lives are, critical informants with respect to whether a systems of services is appropriate, accessible, affordable, acceptable and effective in meeting their needs. As such, families of all types, cultures and socioeconomic levels must be able to participate in all aspects and at all levels of measuring the success of this agenda. Effective family coalitions and family/provider networks across the country have provided data about the informational needs of families and their satisfaction with services, as well as provided training to families around health care, financing and advocacy. You can help by documenting and measuring the success of the health services you use. Learn more.
MCHB is a bureau of the Health Resources and Services Administration (HRSA). To improve the quality of health care services for the underserved, HRSA programs increase access to a full range of needed services for children and families. By striving to continuously improve effectiveness and efficiency, HRSA-funded programs assure that access and quality of care go hand in hand.