Family-Centered Care

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What is Family-Centered Care?

Family-centered care is a way of providing services that assures the health and well-being of children and their families through respectful family/professional partnerships. It honors the strengths, cultures, traditions, and expertise that families and professionals bring to this relationship. Family-centered care improves the patient’s and family’s experience with health care, reduces stress, improves communication, reduces conflict (including lawsuits), and improves the health of children with chronic health conditions (1; 2). Patient- and family-centered care is endorsed by the Institutes of Medicine (3) and the US Department of Health and Human Services (4), and is designated as a core component of a medical home by the American Academy of Pediatrics (5).

Health care visits for children youth and their families can be more than getting shots, having ears examined or getting treatment for the physical symptoms of an illness.  During visits and in all forms of communication, strong family/professional partnerships ensure that a child/youth receives the highest quality of health care.

How is “family” defined?

Families define themselves. The following definition was developed in New Mexico, and has been widely used to define a family:

Families are big, small, extended, nuclear, multi-generational, with one parent, two parents, and grandparents. We live under one roof or many. A family can be as temporary as a few weeks, as permanent as forever. We become part of a family by birth, adoption, marriage, or from a desire for mutual support. As family members, we nurture, protect, and influence each other. Families are dynamic and are cultures unto themselves, with different values and unique ways of realizing dreams. Together, our families become the source of our rich cultural heritage and spiritual diversity. Each family has strengths and qualities that flow from individual members and from the family as a unit. Our families create neighborhoods, communities, states, and nations. (7)

Principles of Family-Centered Care for children

The concepts of “family-centered care” were first articulated by the Maternal and Child Health Bureau, Division of Services for Children with Special Health Needs.  A definition and set of principles of family-centered care were created in 1995 by a team of family leaders and professionals under the guidance of MCHB.  The principles of family-centered care are now widely discussed in relation to both child and adult health care (where the ideas are referred to as “patient-centered care”). These concepts are important in measuring whether health care is high quality.

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.

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.

Pediatric Family-Centered Interventions and Practices (6)

  1. Respecting each child and his or her family
  2. Honoring racial ethnic cultural and socioeconomic diversity and its effect on the family’s experience and perception of care
  3. Recognizing and building on the strengths of each child and family even in difficult and challenging situations
  4. Supporting and facilitating choice for the child and family about approaches to care and support
  5. Ensuring flexibility in organizational policies procedures and provider practices so services can be tailored to the needs beliefs and cultural values of each child and family
  6. Sharing honest and unbiased information with families on an ongoing basis and in ways they find useful and affirming
  7. Providing and/or ensuring formal and informal support (e.g. family-to-family support) for the child and parent(s) and/or guardian(s) during pregnancy childbirth infancy childhood adolescence and young adulthood
  8. Collaborating with families at all levels of health care in the care of the individual child and in professional education policy making and program development
  9. Empowering each child and family to discover their own strengths build confidence and make choices and decisions about their health
  • Decreased anxiety
  • Accelerated recovery time
  • Reduced crying and restlessness
  • Decreased emotional distress with better coping during procedures hospitalization posthospital period and recovery
  • Increased parent confidence and problem-solving capacity
  • Improved mental health status of mothers of children with chronic illness

Source:  see (6) 

  • Improved hospital patient and family satisfaction scores
  • Improvement on standardized measure of medical home implementation
  • Improved staff satisfaction

Source:  see (6)

  • A stronger alliance with the family in promoting each child’s health and development
  • Improved clinical decision making on the basis of better information and collaborative processes
  • Improved follow-through when the plan of care is developed collaboratively with families
  • Greater understanding of the family’s strengths and caregiving capacities
  • More efficient and effective use of professional time and health care resources (e.g. more care managed at home decrease in unnecessary hospitalizations and emergency department visits more effective use of preventive care)
  • Improved communication among members of the health care team
  • A more competitive position in the health care marketplace
  • An enhanced learning environment for future pediatricians and other professionals in training
  • A practice environment that enhances professional satisfaction
  • Greater child and family satisfaction with their health care

Source:  see (6)

Sources:

  1. Patient- and family-centered care and the pediatrician’s role. American Academy of Pediatrics and the Institute for Patient- and Family-Centered Care. 2, 2012, Pediatrics, Vol. 129, pp. 394-404.
  2. Evidence for family-centered care for children with special health care needs: a systematic review. Kulhthau, Karen, et al. 2, 2011, Academic Pediatrics, Vol. 11, pp. 136-43.
  3. Committee on Quality of Health Care in America, Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, D.C. : National Academies Press, 2001.
  4. Department of Health and Human Services. 2011 report to congress: national strategy for quality improvement in health care. Agency for Healthcare Research and Quality. [Online] March 2011. http://www.ahrq.gov/workingforquality/nqs/nqs2011annlrpt.htm.
  5. The medical home. Medical Home Initiatives for Children with Special Needs Projects Advisory Committee. 1, 2002, Pediatrics, Vol. 110, pp. 184-6.
  6. Family-centered care and the pediatrician’s role. 3, 2003, Pediatrics, Vol. 112, pp. 691-696. http://pediatrics.aappublications.org/content/112/3/691
  7. Developed and adopted by the New Mexico Legislative Young Children’s Continuum and New Mexico Coalition for Children, June 1990.

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Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

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