Whom Do I Tell? [A Learning Activity]

Medical information about Head Start children and their families is confidential. Therefore, medical records must be handled and stored in a manner that protects this confidentiality. In this learning activity, health managers and disability coordinators and other program staff will expand their understanding of confidentiality and the appropriate methods for handling and storing medical records. Requiring approximately 45 minutes to complete, this exercise utilizes two handouts, both included here.

The following is an excerpt from Caring for Children with Chronic Conditions.

Purpose
For This Activity You Will Need
Trainer's Preparation Note
Steps
Points to Consider
Handout: Confidentiality
Handout: Whom Do I Tell?

Purpose:

This activity helps program staff become familiar with the regulations and policies to protect the confidentiality of medical information. It also helps increase sensitivity to families' concerns about the disclosure of medical information.

For this activity you will need:

  • Handout T [PDF, 15.3KB]: Confidentiality

  • Your agency's policy on confidentiality and medical record-keeping

  • Flip chart paper and marker

Trainer's Preparation Note:

Before beginning the training:

1. Copy the questions from Step 5 onto flip chart paper.

2. Make two charts on flip chart paper:

- Down the left-hand column, copy the list of people from Handout U.

- Proceeding to the right, title the columns: "Would Tell," "Would Not Tell," and "Why/Why Not."

Step 1:

Explain that this activity helps make us more aware of both the legal and personal considerations regarding the confidentiality of families' medical information.

Step 2:

Ask participants:

  • What does "confidential" mean?

  • Have you had any concerns about confidentiality in your Head Start program?

Step 3:

Distribute Handout T: Confidentiality. Briefly review the information, especially "Who Needs to Know." Briefly review your agency's policy on confidentiality.

Step 4:

Divide participants into groups of three or four people. Explain that you will read them a story about Theresa, a two-year-old, who is entering Early Head Start. Instruct participants to imagine that they are Theresa's parent, either her mother or father. Have them close their eyes and take a moment to settle into the role of the parent. Then read aloud Theresa's Story from the top of Handout U.

Step 5:

  • Would you tell this person about Theresa's diagnosis? (Does this person "need to know?")

  • Why or why not? (What are the benefits and risks of telling this person?)

    Explain that there are no right or wrong answers. Group members may disagree in their feelings and opinions, and should discuss their considerations honestly. Allow approximately 15-20 minutes for discussion.

Step 6:

Bring the participants back to the large group. Post one of the charts with the list of people down the left-hand column. For each person on the list:

  • Ask groups to raise their hands to indicate "Would Tell" or "Would Not Tell." Make a tally on the chart.

  • Ask a group that said "Would Tell" to explain "Why;" and a group that said "Would Not Tell" to explain "Why Not." Write the reasons briefly on the flip chart.

Part 7:

Ask participants:

  • What did you feel and observe in this activity?

  • What would it be like, as a parent, to feel worried about sharing important health information about your child with others?

Part 8:

Instruct participants to step out of their role as Theresa's parent and back into their own role in Head Start.

Ask participants:

  • In your role as a Head Start staff person which of the people on the list do you think need to know about Theresa's diagnosis?

  • Why or why not?

Record the answers on the chart.

Part 9:

Ask participants to consider the different perspectives, between Theresa's parents and Head Start staff, on who "needs to know" about Theresa's medical condition. Ask:

  • How can Head Start best bring together the different concerns-to best preserve the family's confidentiality and to share important health information with people who "need to know"-to best care for the child?

Points to Consider:

 

  • HIV/AIDS is a disease that carries a particular fear of discrimination. However, the same principles of confidentiality apply to all sensitive information about children and families in Head Start.

  • In working with children with chronic conditions and their families, Head Start staff must be sensitive to parents' concerns about confidentiality. We should aim to develop trust between parents and staff-to help parents move beyond the fear of discrimination and enable them to share necessary information-so they can be true partners in the care of their child.

    Activity 7: Whom Do I Tell? adapted with permission from Family Power: Building Skills for Families with HIV and Drug Affected Children. Family Welfare Research Group. Berkeley, Calif., 1992.

Handout: Confidentiality

What does confidentiality mean?
All medical information is confidential. This means that it should not be shared with anyone unless you have permission from a parent or legal guardian. Medical information should only be shared with a signed consent form-often known as a "release of information" form. Consent to share information should be obtained only when someone has a "need to know."

All records containing medical information must be handled and stored in ways that protect the families' confidentiality. Know your program's policy on confidentiality and record-keeping.

Who needs to know?
People "need to know" about a child's medical condition if knowing helps best provide the care that the child needs. Most parents want their child's caregivers to know about the child's medical conditions so their child gets the best care possible. Some parents may choose not to tell staff about a child's medical condition because they are afraid their child might be treated differently. Head Start staff may not share medical information about anyone without the consent of the parent or legal guardian, even if you feel that person has a need to know. The exception is that emergency medical personnel should always be given medical information about a person they are treating.

What else do I need to know about confidentiality?
Know your agency policy and any laws and regulations governing confidentiality in your area. In some jurisdictions, HIV/AIDS has special confidentiality protections.

Public health departments require schools to report certain communicable diseases known as "Reportable Diseases." Make sure your program has the list of reportable diseases and a process for reporting. Staff and parents should also be notified about communicable disease exposures, but without disclosing the identity of the ill person.

 


Handout: Whom Do I Tell?

Theresa's Story:
Theresa is an active, curious, and lovable two-year-old. She is small and has mild developmental delays. When Theresa was nine months old, she was diagnosed with HIV infection; and when she was 15 months old, she was hospitalized with pneumonia and diagnosed with AIDS. She takes daily medication and stays healthy between brief periods of illness-in all, she's doing very well.

Up until now, you haven't told many people about Theresa's HIV/AIDS diagnosis. You want to protect her from discrimination and make sure that she has as normal a childhood as possible. The only other people so far that know are the doctors, nurses, and social worker at the clinic. Now you're enrolling Theresa in Early Head Start and you're thinking about who to tell about Theresa's HIV/AIDS.

The Head Start Agency Director

  • Would you tell this person?
  • Why or why not?

The Head Start Health, Nutrition, and Disabilities Specialists

  • Would you tell these people?
  • Why or why not?

Theresa's Head Start Classroom Teacher

  • Would you tell this person?
  • Why or why not?

Theresa's Head Start Classroom Aides

  • Would you tell these people?
  • Why or why not?

The parents of Theresa's classmates

  • Would you tell these people?
  • Why or why not?

Theresa's Early Intervention Home Visitor

  • Would you tell this person?
  • Why or why not?

Theresa's six-year-old brother

  • Would you tell this person?
  • Why or why not?

"Whom Do I Tell? [A Learning Activity]." Caring for Children with Chronic Conditions. Training Guides for the Head Start Learning Community. HHS/ACF/ACYF/HSB. 1998. English.

Last Reviewed: May 2009

Last Updated: September 24, 2014