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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

Perspective Matters

The Importance of Family/Professional Partnerships in the Medical Home

by Gina Pola-Money, Mo.M.


Who are our kids
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


THE FAMILY-CENTERED CONCEPT

Health Care services

Educational & Vocational Services

Religious/ SpiritualSupport

Child/Family

MentalHealthServices

FamilySupportServices

Financial/ Funding Services


True partnerships
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.


Collaboration
COLLABORATION

Collaborative partnerships often take time and effort to achieve.

Knowing how to interact can be critical to the successful advocacy for children.


Patient and clinician stress related to bad news
Patient and clinician stress related to bad news

Clinician

Patient

Stress

Encounter

Time

Ptacek, JAMA 1996: 496-502


Receiving bad news
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


The grief process
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


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.


A vicious cycle
A Vicious Cycle

Caregiver Health

And Well-being

Caregiver

Effectiveness

Child Health

And Well-being

Benson, 2009


“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


FAMILIES WANTS, NEEDS AND DESIRES ARE DEPENDENT AND FEELS HELPLESS; A FAMILY WHO IS GIVEN INFORMATION CANNOT HELP BUT TO TAKE RESPONSIBILITY AND FEELS EMPOWERED.” GP-M 2000UPON

THE INFORMATION, TRUST, COMPASSION, RESPECT, EMPOWERMENT AND SERVICES THEY RECEIVE!


Parent responses
Parent Responses AND FEELS HELPLESS; A FAMILY WHO IS GIVEN INFORMATION CANNOT HELP BUT TO TAKE RESPONSIBILITY AND FEELS EMPOWERED.” GP-M 2000

  • 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


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.


Overall
OVERALL 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.

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


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