Family-Centered Care
Practice & Psychosocial
Issues of Chronic Illness
Yvonne D. Gathers, MSW, LCSW
Pediatric Pulmonary Center,
Clinical Social Worker
 To become familiar with the principles of family-
centered care
 To define the primary categories of children with
special health care needs
 To see how family centered care and cultural
competence work together
 To review the benefits of collaboration with
 To gain awareness of how psychosocial issues can
impact chronic illness
Children with Special Health Care
 Environmentally at risk: welfare
dependency, lack of stability, low income
 Biologically at risk: Cystic Fibrosis, Fetal
Alcohol Syndrome, HIV, Down Syndrome,
 Developmentally Delayed: cognitive,
physical, communication, social
Definition of
Family-Centered Care
Family Centered Care assures the health and wellbeing 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.
Definition of Family
 Family – enduring relationship whether
biological/non-biological, chosen or
circumstantial, connecting a child/youth and
parent/caregiver through culture, tradition,
shared experiences, emotional commitment
and mutual support
©2007 National Center for Cultural Competence-Georgetown University Center for Child and Human Development
Cultural Competence
 Congruent, defined set of values and principles
and demonstrate behaviors, attitudes, policies, and
structures that enable them to work effectively
 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
 Policymaking, administration, practice, and
service delivery systematically involve consumers,
key stakeholders and communities.
©2007 National Center for Cultural Competence-Georgetown University Center for Child and Human Development
Definition of 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
©2007 National Center for Cultural Competence-Georgetown University Center for Child and Human Development
Organizational Efforts for Linguistic
 Bilingual/bicultural or multilingual/multicultural staff
 Cross-cultural communication approaches
 Foreign language interpretation services including distance
Sign language interpretation services
Multilingual telecommunication systems
Videoconferencing and telehealth technologies, TTY
Print material in easy to read, w/pictures and symbols
Health educational materials
Public awareness material and campaigns
©2007 National Center for Cultural Competence-Georgetown University Center for Child and Human Development
Disparities in Care
 Participate in decision making and will be
satisfied with services
 Coordinated comprehensive care in a medical
 Adequately insured for the services
 Screened early and continuously
 Organized so families can use them easily
 Receive services needed to support the transition
to adulthood.
©2007 National Center for Cultural Competence-Georgetown University Center for Child and Human Development
Philosophical Changes
 Traditional Approaches
 Family-Centered Care
 Deficits
 Strengths
 Expert Model
 Partnership Model
 Control
 Collaboration
 Information Gate Keeping
 Information Sharing
 (-) Support
 (+) Support
 Rigidity
 Flexibility
 Dependence
 Empowerment
Principle #1
Work together based upon equality, trust and respect
A. Create a family friendly environment
 Practitioners are from the community or
have extensive knowledge of the
 Structure activities compatible with the
family’s availability and accessibility
 Demonstrate genuine interest in and
concern for families
Principle #1 continued
B. Create opportunities for formal and
informal feedback and act upon it; ensure
that input shapes decision making
C. Encourage open, honest communication
D. Maintain confidentiality, being respectful
of family members and protective of their
legal rights
Principle #2
Support the growth and development of all family members;
encourage families to be resources for themselves and others
 Encourage family members to recognize
their strengths
 Help families identify & acknowledge
informal networks of support & community
 Create opportunities to enhance the parentchild & peer relationships
Principle #3
Affirm, strengthen & promote families’ cultural, racial and
linguistic identities and enhance their ability to function in a
multicultural society
 Create opportunities for families of different
backgrounds to identify areas of common ground
and to accept and value differences between them
 Strengthen parent & staff skills to advocate for
themselves with institutions & agencies
 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
Principle #4
Programs are flexible and continually responsive to emerging
family and community issues
 Be accessible for families
 Engage families as partners
 Develop a collaborative, coordinated
response to community needs
Principle #5
All Family Centered Practice principles are modeled in all
activities including planning, governance, and administration
 Provide ongoing staff development/training on the
Family Centered Practice
 All staff work as a team, modeling respectful
relationships of equality
 Establish an effective, consistent supervisory
system that provides support for all staff members
and ensures accountability to participants, funders,
and the community
 Establish supervision as a collaborative process
with mechanisms, which support staff in difficult
situations or disputes
Principle #5 continued
 Build a team of staff who is consistent with
program goals, whose top priority is the well
being of families and children
 Structure governing bodies so that they reflect the
diverse constituencies of the community and are
knowledgeable about community needs
 Evaluation is a collaborative, ongoing process that
includes input from staff, families, program
administrators, and community members
Basic Skills
 Solicit and use family input in a meaningful way in the
design or delivery of clinical services, program planning
and evaluation.
 Enumerate benefits of a medical home model for children,
families, providers, health care systems, and health plans.
 Operationalize the “family-centered care” philosophical
constructs (e.g., families and professionals share decisionmaking; professionals use a strengths-based approach
when working with families) and use these constructs to
critique and strengthen practices, programs, or policies that
affect MCH population groups.
Advance Skills
 Ensure that family perspectives play a pivotal role in MCH
research, clinical practice, programs, or policy (e.g., in
community needs assessments, processes to establish
priorities for new initiatives or research agendas, or the
development of clinical guidelines).
 Assist primary care providers, organizations, and/or health
plans to develop, implement, and/or evaluate models of
family-centered care.
 Research the impact of family-centered practice models on
individual or population health.
 Incorporate family-centered and medical home models of
health care delivery into health professions and continuing
education curricula and assess the effect of this training on
professional skills, health programs, or policies.
Key Concepts to Practice FCC
 Respect
 Strengths
 Choice
 Information
 Support
 Collaboration
 Empowerment
Cornerstones of
Family–Centered Care
 Informational Sharing
 Collaboration between patients families and
health care staff
Collaboration Benefits
 Families help to raise public awareness
 Family members bring important skills and
perspectives to training programs for
administrators and direct care providers
 Families advocate for improved
pediatric/adult medical care
 Families bring an important perspective to
system design
Parent’s Point of View
 Recognize my denial, anger
and fear as healthy and natural
responses to grief
 Accept that my child’s health
care needs are only one part
of my family’s priorities
 Value that I’m the expert on
my child
 Respect my methods of
coping without being
judgmental. Keep this
information confidential
Psychosocial Issues
 Employment, Schools,
siblings, transportation,
support systems, insurance
coverage, physical
appearance, substance
abuse, domestic violence,
parenting education
(disease) respite care
 Transition: family home to
independent living,
romance partnership,

What is Family-Centered Care?