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This page was last modified on : 01/22/2014

Partnering With Families

A child's family is the constant in his/her life.  Family knows their child better than anyone else.  They can identify child and family strengths & weaknesses and can determine solutions & management approaches that are workable.   A good collaboration between primary care provider and family results in more efficient health care delivery.  Commit your practice to quality and learning from families:

  • Learn what children with special health care needs and their families require for care and supports. 
  • Work together to enhance the strengths and abilities of the family and youth.
  • Increase the capacity and design care delivery in the medical practice to meet family needs.
  • Incorporate suggestions from families.

 

Tools for Families of CSHCN

  • Kinship Care in Washington State

    Over 35,000 people in Washington State are caring for a relative’s child.

    The financial, legal, and emotional issues of raising a relative’s child can be challenging. Services and support when raising a relative’s child can be a lifesaver.  This website helps provide answers to questions and helps in finding services, programs, and support for those providing kinship care. http://www.dshs.wa.gov/kinshipcare/

    A Resource Guide for Relatives as Parents in Washington State - a project of the  Washington State Relatives as Parents Program (RAPP) and the DSHS Kinship Task Force.  While each family's situation is unique, kinship care families share the critical need for information, services and resources.  This resource guide was created to help provide answers.

Family Responsibilities

     (Based on information from the National Medical Home Initiative, AAP)

  • Work to create a trusting partnership with the medical home.  Be respectful.  Show appreciation.
  • Share complete information with the medical home practice - needs, preferences, values
  • Ask for resources to help learn about medical conditions
  • Recognize it is OK if the physician does not know the answer; try to find information and solutions together
  • Learn symptoms that need 'immediate' attention and how to access care in 'off' hours
  • Collaborate with providers in developing care plan
  • Determine rules and coverage by your insurance or health plan, as well as other sources of coverage for needed services
  • Advocate for your child

 

Medical Practice Responsibilities

 

(Based on information from the National Medical Home Initiative, AAP)

  • Seek and respect parent input
  • Respect family values and beliefs, including interest in alternative medicine approaches
  • Facilitate referral and provide health information as appropriate to subspecialists, other consultants and community resources (including schools)
  • Identify signs and symptoms that require immediate medical attention and how the family can access care at any hour - 24/7/365
  • Collaborate with family in determining management and care plans (Examples of Care Plan Forms).  Attend to family strengths, needs and resources.  Develop shared goals.
  • Pay attention to office accessibility - appointment times, appointment length, and physical layout
  • Link families to support and information resources. Promote family-to-family support

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First Steps to Take to Partner with Your Families of CSHCN

You might want to chose one of the steps below to work on in your practice. 

  1. Give the family/youth tools to manage their care
    • Care Organizer
      • Make-A-Calendar link included
    •  
    • Health care visit  tools -
  2. Review current office flow, accessibility and staff procedures for special needs children and their families
  3. Create a tip sheet for families to optimize their office visit (See example)
  4. Seek input from families and youth on practice improvement (See Family Input Models below)
  5. Determine community partners (Search the Resource Directory from the Center for Children with Special Needs) and establish communication
  6. Provide information (e.g. handouts) and suggest other information resources

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Family Input Models


Parent and Family Advisory Council

    Toolkit for pediatric practices from the National Initiative for Childrens Healthcare Quality and the Family-to-Family Health Information Center at the Federation for Children with Special Needs, Mass Family Voices.

    http://www.nichq.org/resources/PFAC-toolkit-landingpage.html

    Core team of physician, care coordinator and at least 2 parent partners meet bimonthly to identify improvement goals and develop implementation plans, measure outcomes and build on prior efforts.

    See process information and full set of forms to facilitate establishing and coordinating an advisory group in your practice at: Center for Medical Home Improvement

Family Survey (Center for Medical Home Improvement Family survey instrument)

Focus groups

Community forum

Feedback from individual families during visits

  • Brief written survey

    Post-visit survey Microsoft Word Document - Developed by Exeter Pediatrics with support from the Center for Medical Home Improvement
    Pre-visit survey Microsoft Word Document - Developed by Exeter Pediatrics with support from the Center for Medical Home Improvement

  • Verbal feedback

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Further Information: References and Tools


 

Family Centered Care and the Pediatrician/s Role

 

AAP Committee on Hospital Care; Institute for Family Centered Care.  Pediatrics.  112(3):691-696.  Sept 2003.

Special Health Care Needs Forms

 

Draft 10-7-05

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