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... A family is a culture unto itself with different values and unique ways of realizing its dreams. Together, our families become the source of our rich cultural heritage and spiritual diversity. Our families create neighborhoods, communities, states, and nations.
Family-Centered care was first defined in 1987 as part of former Surgeon General Koop’s initiative for family-centered, community-based, coordinated care for children with special health care needs and their families. The Key Elements of Family-Centered Care (listed below) were further refined in 1994 by the ACCH (Association for the Care of Children’s Health). These key elements are widely accepted by families and professionals alike as they embody both the spirit and heart of Family-Centered Care.
At the very heart of family-centered care is the recognition that the family is the constant in a child’s life. For this reason, family-centered care is built on partnerships between families and professionals. Although family-centered care was first intended for children with special needs, it can also be relevant in all settings and can be applied to persons of all ages.
Family-Centered Care is neither a destination nor something that one instantly ‘becomes.’ It is a continual pursuit of being responsive to the priorities and choices of families.
There is no single approach that is right for all families. Family-centered professionals acknowledge and respect family diversity.
Because Family-Centered Care improves and enhances clinical outcomes for children with special needs and provides more support for their families as they deal with the challenges and joys of raising a child with special needs.
Because the family-centered approach enhances success and satisfaction in the work of medical professionals. It places a new emphasis on the art of medicine, recognizing that the way care is provided is important, if not more important, than the actual provision of care. It leads to better health outcomes and wiser allocation of resources.
Family-centered care requires that we recognize the driving forces behind our programs and services. We need to recognize when our services are not family-centered and strive to make them as family-centered as possible.
System-Centered: The needs of, or benefit to, the system drive the delivery of services.
Child-Centered: The strengths and needs of the child drive the delivery of services.
Family-Centered: The priorities and choices of the family drive the delivery of services.
To illustrate these three forces, consider that a child requires a special diet.
In a System-Centered facility, test results must be sent ahead before a visit can be scheduled with a nutritionist. This “rule” reflects a requirement of the system or perhaps a job function within that system.
In a Child-Centered facility, the nutritionist assesses the child, designs a meal plan, and gives it to the parents. Although this approach addresses the child’s clinical needs as identified by the nutritionist, the family’s dietary preferences, cultural practices, and resources have not been considered.
In a Family Centered facility, the nutritionist asks to meet with the parents to jointly design a meal plan in line with the family’s resources and preferences. This addresses the priorities and choices of the family and also affords the best clinical outcome.
Recognize that the family is the constant in the child's life, while the service systems and personnel within those systems fluctuate.
Share complete and unbiased information with parents about their child's condition on an ongoing basis. Do so in an appropriate and supportive manner.
Recognize family strengths and individuality. Respect different methods of coping.
Encourage and make referrals to parent-to-parent support.
Facilitate parent/professional collaboration at all levels of health care -- care of an individual child, program development, implementation, and evaluation policy formation.
Assure that the design of health care delivery systems is flexible, accessible and responsive to families.
Implement appropriate policies and programs that provide emotional and financial support to families.
Understand and incorporate the developmental needs of children and families into health care delivery systems.
Family discrepancy
Has a restrictive definition of the family
Disempowers patients and their families
Relies heavily on technology and biomedical science and undervalues the importance of human interactions in health care experiences.
Is driven by the system
Respect
Strengths
Choice
Flexibility
Information
Support
Collaboration
Empowerment
Once we can begin to recognize the forces that drive our services, it will be easier to visualize new possibilities for Family-Centered Care.
In this exercise, there can be more than one answer depending on how these examples are justified. The important thing about this exercise is to begin thinking about what drives our services rather than getting the right answer.
Driving Forces
S - the needs of, or benefits to, the system drive the delivery of services
C - the strengths and needs of the child drive the delivery of services
F - the priorities and choices of the family drive the delivery of services
2. ____ A child life specialist teaches
a father how to use distraction and other coping strategies with his daughter in preparation for a bone marrow
aspiration. 3. ____ The hospital’s visiting policy
states that visiting hours are open for parents in the NICU except for one hour at each of the three
daily shift changes. 4. ____ The hospital’s ethics committee
has ten members, each representing different departments or disciplines. A parent of a child with
special needs is appointed as the eleventh member. 5. ____ After getting permission from a
physician, families have access to the hospital library. 6. ____ Families participate as faculty
in the hospital orientation program for new employees. 7. ____ In developing a new step-down unit, the
hospital administration invites families to comment on the final plans. 8. ____ A staff nurse explains to a mother that
hospital policy allows a parent to stay during an IV
start and says that her child needs her to be there. 9. ____ A social worker’s job description states that “she/he
is to identify the needs of each child discharged on a ventilator.” 10. ____ A child’s medical records are available 3 – 5
days after a release of information is received. 11. ____ A complete assessment is done on a child and family. When looking at programs and services, we should ask
the question “Is this Family-Centered?” Is
this the only way we can do it? Is
this the best way to do it? Are
we doing it this way only because it’s always been done this way? Here is a summary of what Family Centered Care is
doing to transform our health care system. Emphasizes
Collaboration rather than control Focuses
on families’ strengths and resources rather that on their deficits Recognizes
the family’s expertise as well as that of professionals Fosters
empowerment rather than dependence Promotes
information sharing among patients, families, and providers rather than
information “gatekeeping” by professionals Emphasizes program flexibility rather than
rigidity. More on Family Centered Cared at the Institute
for Family-Centered [Back to Home Page] [Back
to Tutorials]
Answers
Questions to Ask
Summary
This Tutorial compiled by Cynthia
Bissell