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Family-Centered Care Practice & Psychosocial Issues of Chronic Illness
Yvonne D. Gathers, MSW, LCSW
Pediatric Pulmonary Center,
Clinical Social Worker
OBJECTIVES:
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 parents To gain awareness of how psychosocial issues can
impact chronic illness
Children with Special Health Care Needs Environmentally at risk: welfare
dependency, lack of stability, low income Biologically at risk: Cystic Fibrosis, Fetal
Alcohol Syndrome, HIV, Down Syndrome, Asthma
Developmentally Delayed: cognitive, physical, communication, social
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.
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 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
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 disabilities.
©2007 National Center for Cultural Competence-Georgetown University Center for Child and Human Development
Organizational Efforts for Linguistic Competence Bilingual/bicultural or multilingual/multicultural staff Cross-cultural communication approaches Foreign language interpretation services including distance
technologies 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 home
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
Deficits Expert Model Control Information Gate Keeping (-) Support Rigidity Dependence
Family-Centered Care
Strengths Partnership Model Collaboration Information Sharing (+) Support Flexibility Empowerment
Principle #1Work together based upon equality, trust and respect
A. Create a family friendly environment 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
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 resources
Create opportunities to enhance the parent-child & 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 issues
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 decision-making; 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, anxiety/depression