1. Family-Centered Care Practice & Psychosocial Issues of Chronic Illness Yvonne D. Gathers, MSW, LCSW Pediatric Pulmonary Center, Clinical Social Worker

2. 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

4. 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

6. 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.

7. 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

8. 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

9. 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

10. 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

12. 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

13. 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

14. 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 community  Structure activities compatible with the family’s availability and accessibility  Demonstrate genuine interest in and concern for families

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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

22. 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.

23. 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.

24. Key Concepts to Practice FCC  Respect  Strengths  Choice  Information  Support  Collaboration  Empowerment

25. Cornerstones of Family–Centered Care  Informational Sharing  Collaboration between patients families and health care staff

26. 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

27. 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

28. 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