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Perspective Matters

Perspective Matters. The Importance of Family/Professional Partnerships in the Medical Home. by Gina Pola -Money, Mo.M . Who Are Our Kids?.

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Perspective Matters

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  1. Perspective Matters The Importance of Family/Professional Partnerships in the Medical Home by Gina Pola-Money, Mo.M.

  2. Who Are Our Kids? • Children with special health care needs are those children who have or are at risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally. • Over 11% of Utah’s children have a special health care need

  3. THE FAMILY-CENTERED CONCEPT Health Care services Educational & Vocational Services Religious/ SpiritualSupport Child/Family MentalHealthServices FamilySupportServices Financial/ Funding Services

  4. TRUE PARTNERSHIPS A good partnership happens when parents and professionals want to work together to reach the same goal. It is not always easy, especially if there is disagreement about the best thing to do. Partners work together to find answers and respect the expertise of all involved.

  5. COLLABORATION Collaborative partnerships often take time and effort to achieve. Knowing how to interact can be critical to the successful advocacy for children.

  6. Patient and clinician stress related to bad news Clinician Patient Stress Encounter Time Ptacek, JAMA 1996: 496-502

  7. RECEIVING BAD NEWS • Three months after parents received bad news • 12 of 23 sets took in “little or none of the information given” • 4 of 23 sets denied that a separate information session had occurred • 10 of 19 sets remembered the information session, but didn’t understand the content Eden, Pall Med 1994: 105-114

  8. The Grief Process Survival State Denial; Anxiety; Fear Searching State Inner and outer thoughts; Guilt; Shame; Depression; Anger Settled In State - Hope, New Dreams, Different expectations

  9. Parent to Parent Research – Key Findings • Had a significant impact on parents’ cognitive adaptation to their child’s disability • Helped parents progress forward in getting help for their situation • 89% of the parents rated it as helpful • Parents experienced gains in their perceived ability to cope with their child and family • Especially helpful to exchange practical information and to talk to someone who had already “been there” Singer, G., Narquis, J.G., Powers, L.K., Blanchard, L., DiVenere, N., Santelli, B., Ainbinder, J., & Sharp, M. (1999). Journal of Early Intervention. 22(3), 217-229.

  10. A Vicious Cycle Caregiver Health And Well-being Caregiver Effectiveness Child Health And Well-being Benson, 2009

  11. “A FAMILY WITHOUT INFORMATION CANNOT TAKE RESPONSIBILITY AND FEELS HELPLESS; A FAMILY WHO IS GIVEN INFORMATION CANNOT HELP BUT TO TAKE RESPONSIBILITY AND FEELS EMPOWERED.” GP-M 2000

  12. FAMILIES WANTS, NEEDS AND DESIRES ARE DEPENDENT UPON THE INFORMATION, TRUST, COMPASSION, RESPECT, EMPOWERMENT AND SERVICES THEY RECEIVE!

  13. Parent Responses • Dissatisfaction with school/community services • Not enough qualified providers • Long waiting lists • Services not available in the area • Unmet need for family support services • Higher levels of stress National Survey of CSHCN

  14. Families of children with special health care needs are among the most knowledgeable people about what is working well and not so well in the system. They can be essential sources of information and support to providers in helping to improve policies, procedures and programs, and important allies in more general efforts to create better systems of services and care.

  15. OVERALL HUMOR, LOVE FOR OUR CHILDREN AND EFFECTIVE SUPPORT IS WHAT GETS US THROUGH!

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