Building Futures: Supporting Youth Living with HIV

Instrument 9. Panel/advisory Board of Young People Living with HIV (Performance Improvement)

Public Burden Statement: An agency may not conduct or sponsor, and a person is not required to respond to, a collection of information unless it displays a currently valid OMB control number. The OMB control number for this project is 0916-xxxx. Public reporting burden for this collection of information is estimated to average 1.5 hours per response, including the time for reviewing instructions, searching existing data sources, and completing and reviewing the collection of information. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden, to HRSA Reports Clearance Officer, 5600 Fishers Lane, Room 14N-39, Rockville, Maryland, 20857.

During the Performance Improvement site visits, youth will be invited to participate in the action planning session that will occur with multiple clinic staff members, and will focus on strategizing to overcome barriers to care and optimize health outcomes.

The HIV-positive youth consultant on the Performance Improvement project team will help to lead a consumer panel discussion. This consumer panel will consist of the clinic’s existing Consumer Advisory Board (CAB). If the CAB is composed of both youth and adult representatives, the Site Visit Team will hold a meeting with the youth members of the CAB. The clinic will be asked to schedule a CAB meeting during one of the three days of the site visit. The youth consultant will co-lead the CAB session, to obtain input on how the clinic is performing and what kinds of medical and support services the youth would like to see implemented at the clinic. If the clinic site does not have an existing CAB, the site visit team will use the focus group to obtain the relevant information, and ask questions to glean insights that would have been obtained during a comparable CAB meeting.

Questions include:

• Do you think that youth feel like the clinic is a safe space? If not, why?

  • Follow up: What can be done to make youth feel safer here?

• What does the clinic do to help youth get and keep appointments with doctors and other staff at this organization?

  • Follow up: What else can be done to help youth get and keep appointments?

• What do you think are the 2-4 most important things care teams do to help manage HIV for youth?

  • Follow up: What else can the clinic do to help youth manage their HIV?

• What does the clinic do to support medication adherence?

  • Follow up: What else can the clinic do to support medication adherence?

• Does the clinic work with families, partners, and friends to help with youth care and treatment?

  • Follow up: What else can the clinic do to engage youth support networks?

• Does the clinic have any special group programs for teens (e.g. job skills training, social events)?

  • Follow up: What other special programs would be helpful?

• Do youth have a way to give feedback to the clinic on care, services here, and/or to ask for different services?

  • Follow up: What other strategies could the clinic use to obtain feedback from youth?

• How does the clinic link youth with other services they might need that the clinic doesn’t have?

  • Follow up: What else can the clinic do to link youth to other services?

Thank you so much for speaking with us. What you have to say is really important, and we will use it to try to make services better for all youth with HIV.

Is there anything else you would like to share that you did not get to say earlier?

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