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Children's Medical Services - Special services for children with special needs
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Module 1: Lesson 3: Element 3

Element 3: Share Complete and Unbiased Information

This element recognizes that unbiased and complete child information should be shared with the family on an ongoing basis in a clear and supportive manner. Family members are best prepared to make decisions about their child when they have full knowledge and understanding about the condition of that child. Professionals have always been faced with the dilemma of how best to deliver diagnostic and developmental information to the family. It is important to remember that it is the family's hope for the child that enables them to face the day-to-day challenges of parenting a child with special needs. Family members who have met this challenge repeatedly state that how information is given to the family is as crucial as what information is given. Ideally, families want the provider to share relevant information in a caring and compassionate manner and to assist them in making choices with respect to the well-being of their child.

Practice Considerations

  • Explain to the family the purpose and reason for information requested or for specific procedures/evaluations to be performed.
  • Encourage families to write down information, questions, and suggestions before meetings.
  • Avoid making assumptions or speaking in jargon.
  • Offer opinions, but be sure the family understands all options.
  • Repeat critical information, expectations, and next steps.
  • Invite questions and expressions of concern.
  • Provide written information, videotapes, audiotapes, or illustrations when possible as a backup.
  • Be available for follow-up discussions.
  • Schedule adequate time to talk with the family.

Family members often "shut down" when information is being delivered about their child and consequently only hear part of what is being said. It is important for the professional to realize that this is a natural coping strategy and does not necessarily mean that the family is in denial about their child's condition. Rather, it means that they need more time to understand and assimilate what is being said. Providers should not censor information out of doubt or fear that the family is unable to handle bad news. It is crucial for family members to be made aware of all information and options, verbally and in writing, so that they can begin the process of adjusting their lives to meet the needs of the child and ultimately make informed decisions about the supports and services they need.

 

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