What is patient/family-centered health care?

DEFINITION OF FAMILY-CENTERED CARE

Family-Centered Care assures the health and well-being of children and their families through a respectful family-professional partnership. It honors the strengths, cultures, traditions and expertise that everyone brings to this relationship. Family-Centered Care is the standard of practice which results in high quality services.

The foundation of family-centered care is the partnership between families and professionals. Key to this partnership are the following principles:

• Families and professionals work together in the best interest of the child and the family. As the child grows, s/he assumes a partnership role.

• Everyone respects the skills and expertise brought to the relationship.

• Trust is acknowledged as fundamental.

• Communication and information sharing are open and objective.

• Participants make decisions together.

• There is a willingness to negotiate.

Based on this partnership, family-centered care:

1. Acknowledges the family as the constant in a child’s life.

2. Builds on family strengths.

3. Supports the child in learning about and participating in his/her care and decision-making.

4. Honors cultural diversity and family traditions.

5. Recognizes the importance of community-based services.

6. Promotes an individual and developmental approach.

7. Encourages family-to-family and peer support.

8. Supports youth as they transition to adulthood.

9. Develops policies, practices, and systems that are family-friendly and family-centered in all settings.

10. Celebrates successes.

Sources: National Center for Family-Centered Care. Family-Centered Care for Children with Special Health Care Needs. (1989). Bethesda, MD: Association for the Care of Children’s Health. Bishop, Woll and Arango (1993). Family/Professional Collaboration for Children with Special Health Care Needs and their Families. Burlington, VT: University of Vermont, Department of Social Work. Family-Centered Care Projects 1 and 2 (2002-2004). Bishop, Woll, Arango. Algodones, NM; Algodones Associates Maternal and Child Health Bureau Division of Services for Children with Special Health Needs

THE ROLE OF CULTURAL COMPETENCE                            IN FAMILY-CENTERED CARE

Cultural Competence is intricately linked to the concept and practice of “family-centered care”. Family-Centered Care honors the strengths, cultures, traditions and expertise that everyone brings to a respectful family/professional partnership, where families feel they can be decision makers with providers at different levels - in the care of their own children and as advocates for systems and policies supportive of children and youth with special health care needs.

It requires culturally competent attitudes and practices in order to develop and nurture those partnerships and to have the knowledge and skills that will enable you to be “family-centered” with the many diverse families that exist. It also often requires building relationships with community cultural brokers, who can assist you in understanding community norms and link you with other families and organizations, such as churches, beauty shops, social clubs, etc. that can help promote your message or conduct outreach for services.

DEFINITION OF CULTURAL/LINGUISTIC COMPETENCE Cultural competence is defined as a set of values, behaviors, attitudes, and practices within a system, organization, program or among individuals and which enables them to work effectively cross culturally. Further, it refers to the ability to honor and respect the beliefs, language, inter-personal styles and behaviors of individuals and families receiving services, as well as staff who are providing such services.

At a systems, organizational, or program level, cultural competence requires a comprehensive and coordinated plan that includes interventions at all the levels from policy-making to the individual, and is a dynamic, ongoing, process that requires a long-term commitment.

A component of cultural competence is linguistic competence, the capacity of an organization and its personnel to communicate effectively, and convey information in a manner that is easily understood by diverse audiences including persons of limited English proficiency, those who are not literate or have low literacy skills, and individuals with disabilities.

PRINCIPLES OF CULTURAL COMPETENCE

An organization should:

1) Value diversity in families, staff, providers and communities;

2) Have the capacity for cultural self-assessment;

3) Be conscious of the dynamics inherent when cultures interact, e.g. families and providers;

4) Institutionalize cultural knowledge; and

5) Develop adaptations to service delivery and partnership building reflecting an understanding of cultural diversity.

An individual should:

1) Examine one’s own attitude and values;

2) Acquire the values, knowledge, and skills for working in cross cultural situations; and

3) Remember that every one has a culture.

Sources: Maternal and Child Health Bureau (MCHB), Guidance and Performance Measures for Discretionary Grants, Health Resources and Services Administration, U.S. Department of Health and Human Services, Denboba and Goode, 1999 and 2004. Cross, Bazron, Dennis and Isaacs, Towards a Culturally Competent System of Care, 1989. Goode and Jones, Definition of Linguistic Competence, National Center for Cultural Competence, Revised 2004. Denboba, “Federal Viewpoint”, Special Additions Newsletter for Children with Special Health Care Needs, Spring/Summer 2005.

Additional Information about Family-Centered Care

Patient- and family-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care patients, families, and providers.

Patient- and family-centered care applies to patients of all ages, and it may be practiced in any health care setting. What are the core concepts of patient- and family-centered care?

Dignity and Respect. Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care.

Information Sharing. Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information in order to effectively participate in care and decision-making.

Participation. Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.

Collaboration. Patients and families are also included on an institution-wide basis. Health care leaders collaborate with patients and families in policy and program development, implementation, and evaluation; in health care facility design; and in professional education, as well as in the delivery of care.

                                                Institute for Family-Centered Care

In their efforts to improve health care quality and safety, health care leaders today increasingly realize the importance of including a perspective too long missing from the health care
equation: the perspective of patients and families. The experience of care, as perceived by the patient and family, is a key factor in health care quality and safety.

Bringing the perspectives of patients and families directly into the planning, delivery, and evaluation of health care, and thereby improving its quality and safety, is what patient- and family-centered care is all about. Studies increasingly show that when health care administrators, providers, and patients and families work in partnership, the quality and safety of health care rise, costs decrease, and provider and patient satisfaction increase.

Establishing patient- and family-centered care requires a long-term commitment. It entails transforming the organizational culture. This approach to care is a journey, not a destination— one that requires continual exploration and evaluation of new ways to collaborate with patients and families. The following steps can help set a clinic or health system on its journey toward patient- and family-centered care.

1. Implement a process for all senior leaders to learn about patient/family-centered care. Include patients, families, physicians, and staff from all disciplines in this process.

2. Appoint a patient/family-centered steering committee comprised of patients and families and formal and informal leaders of the organization.

3. Assess the extent to which the concepts and principles of patient/family-centered care are currently implemented within your clinic or health system. (A brief initial assessment tool appears in the next section of this document.)

4. On the basis of the assessment, set priorities and develop an action plan for establishing patient/family-centered care at your organization.

5. Using the action plan as a guide, begin to incorporate patient/family-centered concepts and strategies into the organization’s strategic priorities. Make sure that these concepts are integrated into your organization’s mission, philosophy of care, and definition of quality.

6. Invite patients and families to serve as advisors in a variety of ways. Appoint some of these individuals to key committees and task forces.

7. Provide education and support to patients, families, and staff on patient/family-centered care and on how to collaborate effectively in quality improvement and health care redesign. For example, provide opportunities for administrators and clinical staff to hear patients and family members share stories of their health care experiences during orientation and continuing education programs.

8. Monitor changes made, evaluate processes, measure the impact, continue to advance practice, and celebrate and recognize success.

Family-Centered Care Tools
Newly-published Family-Centered Care Self-Assessment Tools are designed as an opportunity for health care practices and families to assess current areas of strength and identify areas for growth, plan future efforts, and track progress toward family-centered care. These tools include a Family Tool, a Provider Tool, and a Users Guide. Please feel free to download and use these or order them as a set from our online catalog. http://www.familyvoices.org/

The Institute for Family-Centered Care offers many resources, tools and information about patient/family-centered care:  www.familycenteredcare.org