HEAD START®

Caring for Children with
Chronic Conditions

Training Guides for the Head Start Learning Community

Table of Contents | Preface | Introduction | Module 1 | Module 2 | Module 3
| Continuing Professional Development | Resources

MODULE 2: Activity 7 - Whom Do I Tell?

Module 2 | Activity 1 | Activity 2 | Activity 3 | Key to Activity 3 | Activity 4 | Activity 5 | Activity 6 | Activity 7 | Next Steps

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: Confidentiality
  
  
• Handout U: Whom Do I Tell?
  
  
• 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.