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Family Centered Care
December 2, 2011
Robert Lucio, PhD
Family Centered Care
• 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
• Applies to patients of all ages and may be
practiced in any health care setting
Institute for Family-Centered Care
Family
Family –
1. A basic social unit consisting of parents and their
children, considered as a group, whether
dwelling together or not
2. Social unit consisting of one or more adults
together with the children they care for
3. Any group of persons closely related by blood,
as parents, children, uncles, aunts, and cousins
(Dictionary.com)
Family
Family
• Enduring relationship whether biological/nonbiological, chosen or circumstantial,
connecting a child/youth and parent/caregiver
through culture, tradition, shared experiences,
emotional commitment and mutual support
(National Center for Cultural Competence-Georgetown University Center for Child
and Human Development, 2007)
Cultural Competence
• Congruent, defined set of values and principles and
demonstrate behaviors, attitudes, policies, and
structures that enable them to work effectively
cross-culturally
• Value diversity, conduct self-assessment, manage the
dynamics of difference, acquire and institutionalize
cultural knowledge and adapt to the diversity and
cultural contexts of communities they serve
• Cultural competence is intricately linked to the
concept and practice of “family centered care”
(National Center for Cultural Competence-Georgetown University Center for Child
and Human Development, 2007)
Linguistic Competence
• Capacity to communicate effectively, and
convey information in a manner that is easily
understood by diverse audiences to include
person of limited English proficiency, low
literacy skills and with disabilities.
(National Center for Cultural Competence-Georgetown University
Center for Child and Human Development, 2007)
History
• Family-centered care emerged as an important
concept in health care the second half of the 20th
century
• Understanding the importance of meeting the
psychosocial and developmental needs of
children
• Families are essential components in promoting
the health and well-being of their children
(American Academy for Pediatrics, 2003)
History
• Family-centered care was given additional
impetus by consumer-led movements of the
1960s and 1970s and by professionals in
education, health, and child development
• Support for families and the active
participation of parents in their children’s
education and healthcare gained momentum
in the 1970’s and 1980’s
(American Academy for Pediatrics, 2003)
History
• PL 94-142, the Education for all Handicapped
Children Act of 1975 mandated publicly
supported education for children in the least
restrictive environment
• Each child would have an individual education
plan
• Parents of children who are disabled began to
speak out about their concerns
1980’s
• The Katie Becket waiver became available
enabling states to provide services to enable
children to receive services in their own homes
• The concept of the “least restrictive
environment” gained strength
• In 1985 the Maternal and Child Health Bureau
enabled a survey to assess the extent to which
state health departments involved parents in
planning services for children
1990’s
• The Institute for Family Centered Care was
formed in 1992
• MCHB continued to increase funding to
support family centered efforts to families of
HIV affected children, parents, and youth as
well as other children with special needs.
Education efforts
Efforts were made to increase attention to
family centered care in medical education,
public health education, social work
education, and other disciplines
Focus intentionally began to broaden away from
children with special needs to all public health
programs and the idea of including family as
an integral part of planning for child health
services gained acceptance
Public Health Education
• Recognition of the fact that in this area
practice began to develop far in advance of
training of students in MCH programs
• The essential components of parent centered
approaches have only recently been clearly a
focus of MCH (MPH) training programs
• The MCH training grants have been an avenue
for increasing attention to this issue
Family Focused vs Family Centered
• In family-focused care, professionals often
provide care from the position of an "expert -"
assessing the patient and family,
recommending a treatment or intervention
and creating a plan for the family to follow
• They do things to and for the patient and
family, regarding the family as the "unit of
intervention."
Family Focused vs Family Centered
• Family-centered care, by contrast, is
characterized by a collaborative approach to
caregiving and decision-making
• Each party respects the knowledge, skills, and
experience that the other brings to health
care encounters.
• The family and health care team
collaboratively assess the needs and
development of the treatment plan.
Family Centered Care
• A philosophy and approach to health care that places the
patient and family at the center of institutional and
professional focuses
• Patients and families are involved in all aspects of
planning, implementation and evaluation of health
services
• Involves patients and families in polices, programs,
facility design, and staff day-to-day interactions
• Facilitates collaborative relationships between and
among consumers and health providers
(Farrar, Shaffer, McLuaghlin, & Klick, 2009)
Maternal and Child Health Bureau
Definition:
• 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
Why Family Centered Care
Parents Concerns
• Lack of Information
• Exclusion from Decision-Making
• Overtreatment or Under-treatment
• Policies and Procedures
• Lack of Follow-up
Benefits
• Families
• Children
• Staff
• Physicians
• Organizations
(Family Voices, 2008)
Family Centered Care
• Family-centered care shapes
– Organizational Culture
– Policies (HR, Patient Information)
– Patient and Family Participation in Advisory Roles
– Programs
– Facility Design
– Research
– Day-to-day interactions (among patients, families,
physicians, and other health care professionals)
(American Academy for Pediatrics, 2003)
Principles of FCC
• The foundation of family-centered care is the
partnership between families and
professionals
• MCHB which is part of HRSA and which
administers the Title V programs has
developed a series of principles of family
centered care
(Family Voices, 2008)
Principles of FCC
• Principle 1: 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.
– Practitioners are from the community or have
extensive knowledge of the community
– Structure activities compatible with the family’s
availability and accessibility
– Demonstrate genuine interest in and concern for
families
Principles of FCC
• Principle 1: Families and professionals work
together in the best interest of the child and
the family
– Create opportunities for formal and informal
feedback and act upon it; ensure that input
shapes decision making
Principles of FCC
• Principle 2: Everyone respects the skills and
expertise brought to the relationship
– Family members know their own situation better
than anyone
– Recognize and reinforce the role families play in
their children’s care (ie. caregiver)
– Families also provide valuable information about
their children, including information about their
children’s symptoms and medical histories
Principles of FCC
• Principle 3: Trust is acknowledged as fundamental
– Each visit is an opportunity for families, youth and
health care providers to partner to assure quality
health care for the child and to support the family’s
needs in raising their child
– Respect for each family’s basic human dignity, their
expertise, their values and culture, and the variety of
ways in which they cope serves as a foundation for
communication and relationships with families
– Maintain confidentiality, being respectful of family
members and protective of their legal rights
Principles of FCC
• Principle 4: Communication and information
sharing are open and objective
– Encourage open, honest communication
– Maintain staff who reflect the cultural and ethnic
experiences and languages of the families with
whom they work and integrate their expertise into
the entire program
– Provide ongoing staff development on diversity
issues
– It’s important that families have access to
complete and easy-to-understand information
about their child’s or their own care
– Recognize & respect different methods of coping
Principles of FCC
• Principle 5: Participants make decisions
together
– All staff work as a team, modeling respectful
relationships of equality
– Families are encouraged to be fully engaged in the
every part of the treatment process
– In the care of an individual child, families and
health care personnel collaborate, as partners, to
determine what is best for the child and family
Principles of FCC
• Principle 6: There is a willingness to negotiate
– Solicit and use family input in a meaningful way in
the design or delivery of clinical services, program
planning and evaluation
– Family centered care recognizes that families are
very diverse and will make different choices for
their children and themselves
– For example, some parents prefer to remain with
their children during a treatment procedure, while
other will not. FCC practitioners convey respect for
the choices that families make for themselves and
their children.
Elements of FCC
1. Acknowledges the family as the constant in a
child’s life
– Service systems and personnel within those
systems fluctuate
– Talk about the range of treatment options and
care choices that would best fit the child/youth
– Share unbiased and complete information with
parents about their child’s care on an ongoing
basis in an appropriate and supportive manner
Elements of FCC
2. Builds on family strengths
– Strengthen parent & staff skills to advocate for
themselves with institutions & agencies
– Recognize the families support network and role
of faith/religion or other cultural supports
Elements of FCC
3. Supports the child in learning about and
participating in his/her care and decisionmaking
– Include child in decision making in keeping with age
and development
– Offer opportunities for families and youth to meet
with older youth and adults as role models for
achieving future goals
Elements of FCC
4. Honors cultural diversity and family traditions
– Involve the families request for others (extended
family, persons of faith, traditional healers) to
participate in the decision making process
– Recognition of family strengths and individuality and
respect for different methods of coping
Elements of FCC
5. Recognizes the importance of community
based services
– Work with families to identify needed (and
available) community resources
– Help families make first contact with community
based services
– Follow up to see
• If a family has successfully connected with service
• If the service was useful
• If the service was respectful of the clients culture and
values
Elements of FCC
6. Promotes an individual and developmental
approach
– Understanding and incorporating the
developmental needs of infants, children, and
adolescents and their families into the healthcare
delivery system
– Reassess care approaches at key developmental
milestones and transitions
Elements of FCC
7. Encourages family-to-family and peer support
– Peer to peer support showed increases in parents
confidence and problem solving. Parents noted this
support could not be received in any other manner
– Actively assist in linking families with other families
– Consider language and culture when connecting
families to each other
– Have a process by which families can share their
strengths with other families
Elements of FCC
8. Supports youth as they transition to
adulthood
– Offer youth educational opportunities to support
self-care (making appointments, medications,
insurance)
– Work to develop formal healthcare transition
plans
Elements of FCC
9. Develops policies, practices, and systems that
are family-friendly and family-centered in all
settings
– Explain rights under HIPPA in a way the family can
understand
– Have policies to assure that financial costs do not
get in the way of families receiving records
– Help families understand and interpret their
children’s medical records
– Have policies specifically about FCC that occur at
all levels (family, practitioner, organization)
Elements of FCC
10. Celebrate Successes
– Take time to share and document successes with
families
– Share successes with each other in an agency
Benefits of Family Centered Care
Family
• Improve patient and family outcomes
• Increase patient and family satisfaction
– Family presence during health care procedures
decreases anxiety for the child and the parents
resulting in smoother treatment, quicker recovery,
and discharged sooner
– Lower levels of emotional distress and increased
coping in families
(American Academy for Pediatrics, 2003)
Benefits of Family Centered Care
Staff
Increase professional satisfaction
• When FCC is a cornerstone of an agencies
guiding principals, staff show more positive
feelings about their jobs
• Increase providers’ sense of teamwork
• Generate new, previously unknown
information from the family
(American Academy for Pediatrics, 2003)
Benefits of Family Centered Care
Costs
Lead to more effective use of health care
resource
• Decrease of health care costs and the need for
additional services
(American Academy for Pediatrics, 2003)
Benefits of Family Centered Care
Health Care Professionals
• Development of a strong alliance with families
• Improved follow through by families when the
plan is developed in conjunction with their
needs
• Greater understanding of the families
strengths
• Greater family and child satisfaction with
healthcare
(American Academy for Pediatrics, 2003)
Challenges
• Flies in the face of control of health care financing by
third party payers and thoughts that it may take more
time
• Families and professionals are often at odds about
appropriate proceedings
• May be at odds with the concept of evidence based
practice
• Definitions of family are continually difficult
• Sometimes is at odds with regulations or even laws
Summary
• Family centered care is a mandated approach
for public health MCH services.
• It is based on positive research outcomes, but
there is the need for much more research to
really understand how best to incorporate
families into practice.
• It is a very complex but critical area.
Summary
• Over the last decades the concept of family centered
care has expanded into the total realm of health care
• Health care professionals should be trained in building
a patient-centered rather than disease centered system
of care
• Health care policy should be amended to support
families
• Put health care decisions back into the hands of
patients and families and less into third party payers
and physicians
Where to start
1. Implement a process for all senior leaders to learn
about patient- and family-centered care. Include
patients, families, and staff from all disciplines in this
process
2. Appoint a patient- and 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- and family-centered care are
currently implemented within your hospital or health
system
(Institute for Patient and Family Centered Care, 2011)
Where to start
4. Set priorities and develop an action plan for
establishing patient- and family-centered
care
5. Begin to incorporate patient- and familycentered concepts and strategies into the
hospital’s strategic priorities. Make sure that
these concepts are integrated into your
organization’s mission, philosophy of care,
and definition of quality
(Institute for Patient and Family Centered Care, 2011)
Where to start
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- and 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.
(Institute for Patient and Family Centered Care, 2011)
Where to start
8. Monitor changes made, evaluate processes,
measure the impact, continue to advance
practice, and celebrate and recognize
success.
(Institute for Patient and Family Centered Care, 2011)