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