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Disclosure Guidelines



The following outline is a 'suggested process' for handling the disclosure of HIV/AIDS by a student and/or family member in a community. This outline makes the assumption that the student of family member discloses their medical status to school personnel prior to the information being disseminated within the community at large. It is important to remember that each family/personnel situation; each school and each community is different. When planning for a possible disclosure, each situation needs to be handled on an individual basis and in a manner which best meets the needs of the community, school, the students, and the families involved.

Key Players: It is recommended that two separate “teams” be established prior to a disclosure — an Educational Team and a Resource Team. These teams play critical roles in the process of community disclosure and education.

The Educational Team — includes professional health and educational specialists from Nebraska Health and Human Services (Office of Disease Prevention-HIV/AIDS Program), the Nebraska Department of Education (HIV Program Consultant) and the local School Nurse. These professional educators will have a background in HIV/AIDS education and a working knowledge of issues specific to school settings.

The Resource Team — includes locally based members of the community where the disclosure will occur. This team should include community "gatekeepers" who are familiar with the community at large, know area resources and may be able to identify potential "hot-spots" which may be encountered during the disclosure process. This team will also serve as a resource to the community following the disclosure. Though the members of this team will vary according to each individual situation, appropriate members may include: school administrators, teachers, counselors, local physicians, clergy, school board members, parents/family members and or respected members of the community who may have a direct connection to the school or family.

Factors to Keep in Mind: Though disclosure of HIV may not be as frightening to some people today as it was 10 years ago, the emotions involved with sharing intimate information about oneself or love one are significant. The following statements are made as reminders for those involved in the process:

  • Education is critical. Accurate and timely information about HIV disease, transmission modes, treatments, resources, etc. is important; state and medical personnel are those most likely to keep abreast of the latest information.

  • Emotional responses to situations like HIV disclosure are usually strong. It is important to validate everyone’s concerns, however, a timely, calm, planned approach to dealing with the situation will be in everyone’s best interest. Preparation and preplanning (even if you never have to deal with the situation) will make everyone feel more in control.
  • Remember the family! The family’s involvement in the disclosure is central to the process. All members of the family are being affected; parents, siblings, and extended family. Look at a process which is inclusive of the needs of everyone, if possible.

  • Adults love to be in control…. If the person infected with or affected by the HIV disclosure is a child, don’t forget to ask what they are feeling, thinking or need. (Example: one young man who disclosed his HIV status by accident at school one day was more concerned that his friends and their parents were told about the situation before the rest of the school. He was also afraid to go back to school after the disclosure and needed a trusted adult to attend with him the first day. After a few hours in school he found he was receiving enough support to ask the "adult" friend to leave because he was fine.)

  • Everyone involved play an important role in the process, though his or her roles are different. Utilize the talents, expertise, skills and rapport of those involved in the process.

Process Outline:

Step One: Initial Contact — After the student/parent shares information with the school, the school should contact the HIV consultant at the Nebraska Department of Education (402/471-4359) and/or the HIV/AIDS Program at Nebraska Health and Human Services (402-471-9098).

Step Two: Initial Meeting — An initial meeting with the family, local school personnel (those identified as key players for this process), and State staff. This meeting should provide opportunity for the family to share issues/concerns and begin developing a plan of action for the process of disclosure.
  • Identify members for the Education Team
  • Identify members for the Resource Team
  • Identify others who may need to be informed or included in this initial planning process
  • Develop a timeline for what is going to happen and when, as well as who is responsible for each task.

Step Three: Resource Team Presentation — The members of the Educational Team will provide the Resource Team and other key individuals with basic HIV/AIDS factual information. The Disclosure Plan and follow-up activities should also be reviewed at this time.

Step Four: Meet with Local School Board — A meeting with the local school board should be called to give them a description of the problem and a description of the disclosure plan and follow-up activities. Obtain school board support. This meeting may be facilitated by representatives from the Educational Team and the school administration (principal, superintendent, board member, etc.)

Step Five: Staff Presentations — The Education Team or health education specialists identified by the team should conduct HIV/AIDS educational presentations within each building to all school personnel (teachers, para-professionals, food service, custodial, support staff, etc.). School administrators/board members should also present the Disclosure Plan and follow-up activities.

Step Six: Student Presentations/Education — Health education specialists should conduct HIV/AIDS educational presentations within each building to all students. Student presentations should be provided in developmentally appropriate groupings, i.e. younger children, 4th, 5th, 6th graders, Middle School, High School, etc.

Step Seven: Meeting with Classroom Parents — Health education specialists should conduct HIV/AIDS educational presentations for parents/family members of classroom students. School administrators/board members should also present the disclosure Plan and follow-up activities.

Step Eight: Community Presentation(s) — Health education specialists should conduct HIV/AIDS educational presentation(s) for all community members. The Resource Team plays a critical role in preparation for these presentations and should be present during them to show "support" for the family, school, community and the Disclosure Plan. School administrators/school board members should present the Disclosure Plan and follow-up activities to the attending public.

Step Nine: Staff Presence/Support for Schools — Health education specialists should provide support for the schools throughout the day(s). Examples of support that may be needed includes technical assistance of interpretation and enforcement of school policy (policies should already be in place), general information sharing, problem solving, provision of materials, sample letters, press releases, etc.

Step Ten: Press Conference — Meet with local/area newspapers, T.V., radio stations or other media to provide information, expression of school board support, personal interest story, review of education strategies used during the last several days, and the need for community support for the family.

Follow Up: Special events such as this generate a lot of activity and emotion in a relatively short period of time. It is important to include in the overall plan a follow-up component. The Educational and Resource Teams or members of them (as appropriate to the situation) should provide opportunity for school personnel, the family and students to debrief the events. A required staff meeting to discuss the process, assist teachers with additional information or issues they are continuing to deal with, ongoing informal contact with the family to show support as well as support for students with special issues should be provided. A follow-up by the media would also be appropriate several months after the disclosure to reinforce the positive responses of all members of the community. State HIV public health and education staff will be able to provide resources and referrals to the school and community as needed.

Note: The above Disclosure Plan Outline is meant to be a sample guideline only. Actual disclosure activities and timelines may vary and should be flexible in order to meet the needs of the community, the school, the students, and the families involved. It is recommended, however, that steps two through ten take place within a one or two day time period.

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