Building Futures: Supporting Youth Living with HIV

Instrument 5. Program and Administrative Staff Interview Guide (Specialized)

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 hour 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.

Semi-structured interviews will be conducted separately with the program manager and the clinical director. Additionally, follow-up questions will be shaped based on the online pre-site visit questionnaire. Please print out questions 8 and 39 from the survey so that you can review during the interview where referenced.

“Follow ups” are questions or prompts that can used to obtain additional information if the interviewee’s answer does not cover that topic area. If questions have already been covered through previous answers and seem redundant, do not ask those questions.

Individual interviews will be conducted with at least one of each of the following roles where available/applicable:

• Providers/nurse practitioners

• Mental health counselor

• Substance abuse counselor

• Case manager

• Peer coordinator

• Administrative staff

Introduction

Thank you very much for agreeing to speak with me. I am [NAME] and I work for [ORGANIZATION]. As you may know by now, I am working with a project team led by DSFederal, Inc, to conduct site visits for the HIV/AIDS Bureau of the Health Resources and Services Administration, an operational division of the U.S. Department of Health and Human Services. We are trying to learn more about the effects of retention in care and viral load suppression among HIV-positive youth served by the Ryan White HIV/AIDS program.

I want you to feel comfortable sharing your thoughts and opinions, and I would like you to know that everything that you tell me will be confidential. Our report will describe the experiences and viewpoints of patients and staff, but specific comments will not be attributed to specific people, and no one will be quoted by name. This study has been approved by the U.S. Office of Management and Budget.

Do you have any questions for us before we get started?

Interviewee Information

To start, I would like to learn a bit more about you and your organization.

1. What is your current position? What are your roles and responsibilities?

2. How long have you been in your current position and at the agency? What is your background in adolescent health?

3. Can you provide a little background on your organization’s mission, what it does, and how long it has been serving HIV-positive youth?

   • Follow up: Size, affiliation, where it sits in overall organization (e.g., are youth served among a larger group of HIV positive individuals or do they have their own clinic?)

4. We learned from the pre-work survey and from reviewing your patient statistics that your patient population is primarily [fill in from pre-work]. Does that seem accurate?

   • Follow up: age, subgroups or subpopulations e.g. racial and ethnic minorities, LGBTQ, homeless youth

Overall Thoughts

As you know, we have come to visit your site because of your really impressive outcomes with retaining youth in care and helping them achieve viral suppression. We would like to ask you a few questions as to what you think contributes to these outcomes.

5. What do you think has most contributed to your clinic’s strong outcomes in keeping youth retained in care?

• Follow up: What specific practices and activities do you have in place to promote retention in care?

6. Describe an example of a success you have had around retention and engagement with youth.

7. What do you think has most contributed to your clinic’s strong outcomes in helping youth achieve viral suppression?

• Follow up: What specific practices and activities do you have in place to help youth achieve viral suppression?

What do you see as challenges in keeping youth retained in care and helping them achieve viral suppression?

Clinic Systems and Infrastructure

Thanks so much for all of your thoughts so far. Now we would like to ask you a few questions about [PROVIDER ORGANIZATION]. We would like to ask you some questions about some specific areas that might be contributing to these outcomes. Questions will be related to the following areas [show diagram]. We have already collected some information in the pre-survey, but would like to look a little more closely at how you serve youth across these five broad areas.

We are going to start by asking you about some of your clinic systems and infrastructure. Does that work for you?

Addressing Financial Barriers

8. Do you think that your patients feel that their financial issues are being addressed by the clinic?

• Follow up: Reimbursements for transportation, insurance navigation services, Cost plans/options for appointments and medications

Thank you for everything you have talked about so far. Now we would like to ask you a little bit about some challenges that occur with certain patients.

Appointment Scheduling

Now we would like to ask you about appointment scheduling practices at your clinic.

9. Can you describe your clinic’s appointment scheduling process?

• Follow up:

  • How long does it take for someone to get an appointment?

  • Do you think this helps youth keep their appointments?

  • Do you have youth-friendly hours? (e.g. after school, weekends)

  • Do patients schedule follow-up appointments at their visit?

  • Does the clinic take walk-ins/same day?

  • Do patients receive reminders for their appointments? Via what modes (text/phone/email)? How frequently before an appointment?

  • What proportion of appointments do you think are missed appointments?

  • What happens when a patient misses an appointment?

10. [FRONT DESK STAFF ONLY]: Can you describe how you work with youth who are enrolling in the RWHAP and need to provide documentation to prove residency or income, for example?

• Follow up: Can you describe any challenges you face with this process?

High-Risk Patients

How do you identify patients that are at high risk for dropping out of care or not adhering to their medications?

• Follow up: Once you have identified a patient as high-risk for dropping out of care or non-adherence, what do you do?

Youth-Friendliness

Do you think your patients like your clinic environment?

• Follow up: youth friendly hours, clinic feels safe, clinic provides amenities appealing to youth, use of social media, technology

Confidentiality

11. Do you think that your patients feel that their information is kept confidential?

12. Does your clinic have policies in place to ensure youth have alone and private time with their provider without the presence of their families or guardians? If yes, please describe these.

• Follow up: Has this worked well? What’s the value of this accommodation?

Clinical Standards and Models of Care

Thanks so much for telling about your clinic systems. Now we would like to ask you a few questions about [PROVIDER ORGANIZATION]’s clinical standards and models of care. We have already collected some information in the pre-survey, but would like to look a little more closely at how you serve youth.

Models of Care

13. Please describe the experience of a youth patient in your clinic – from the time they are tested and linked to care, through their clinical care and treatment, and through transition to adult care.

14. Please confirm if your clinic provides the following support services [use responses from question 8 of pre-survey]:

• Outreach (e.g. clinic-based, community-based, peer-based, street-based)

• HIV medical and non-medical case management

• Mental health

• HIV service referrals and follow up (referrals for mental health, drug treatment, ADAP, transportation)

• Peer support/navigation

• System navigation (e.g. accompanying patients to appointments, explaining procedures to new patients, scheduling appointments, other navigation assistance)

• Substance abuse counseling

• Housing assistance

• Lawyers/legal assistance

• Client education (HIV services, life supports, life skills training)

• Remedial help with school/tutoring

Follow ups:

• Please describe how these services are provided, who provides them, and which patients utilize them.

• How do you see these services as important?

Staffing

Now we would like to hear about how your agency is staffed.

15. To begin, please describe how the care teams are structured to serve your patients [reference staff list/organizational chart].

• Follow ups:

  • How many and what type of staff are involved in youth HIV care?

  • What are their roles and responsibilities?

  • Who leads the care teams?

  • How does your staff operate like a team?

  • What is the role of leadership in the care teams?

  • Do you have staff solely dedicated to the youth program or are staff shared with other programs?

16. What are some of the things you have found helpful in improving the quality of care you provide to youth living with HIV?

• Follow up: training, continuing education, conferences, mentoring, resources to improve staff skills and knowledge (e.g. HRSA HAB Technical Assistance; AETCs; Target center)

Evidence-Based Interventions

17. As you know, there is a lot of talk about promising practices and evidence-based methods of working with youth. Please tell us more about your use of the following interventions [use responses from question 43 of pre-survey]:

• Full spectrum primary care

• Availability during the week and on-call 24/7

• Connections to local ERs or urgent care

• Hormonal care

• Motivational interviewing

• CBT

• Mental health screening

• Substance abuse interventions (SBIRT, etc.)

• Use of PrEP for prevention with partners

• Use of peer navigators

• Use of Community Health Workers (CHWs)

• Adherence support

• Financial incentives

• Directly Observed Therapy

• Technology support, such as text/Short Message System (SMS) and apps

• Other _________

• Incorporation of “trauma informed care”

• Screening and recognition

• Strength and resilience frameworks

• Programs with paths for recovery

• Mindfulness/meditation/yoga

• Mental health/behavioral referrals

• Psychiatric referrals

• Other_________

• Specific EBIs (e.g. CLEAR, WILLOW) ____________________

• Other _______________

18. [PROVIDERS ONLY]: How do you approach counseling around medication initiation?

• Process for starting, how initiation is suggested to a patient, how soon they start, how are patient opinions and input incorporated, what issues do you identify before initiating

19. How much time do you have with patients one-on-one?

• Follow up: Do you feel like you are the key point person in their care?

20. How do you think your patients view efforts to transition them from your clinic to adult care?

• Follow up:

  • Do you have individualized plans for transitioning youth?

  • At what age are youth transitioned? At what age do you start transition planning?

  • Do you work in partnership with any adult programs on transitioning youth?

  • How do you think the ideal transition would work?

  • Are you pleased with the transition strategy at your clinic?

Provider and Care Team Knowledge, Skills and Attitudes

Thank you for all of the great information you have shared so far. Now we would like to move on to hearing more about the knowledge, skills and attitudes of providers here.

Knowledge, Skills and Attitudes

21. What are your main considerations when working with youth?

• Follow up:

  • How do you think of working with youth differently than working with adults or children?

22. What do you enjoy most about working with this population?

• Follow up:

  • What’s most challenging about working with this population?

  • What’s most challenging about working with specific subpopulations?

  • What concerns you most about working with these populations?

23. There are so many areas of diversity among patient populations: age, gender identity, sexuality, race, ethnicity, family, economic status. Given this diversity, how do you identify patient needs across the different demographics that you serve?

• Follow up:

  • How does the clinical care or recommendations differ depending upon a specific person’s history or background?

  • How about by age?

24. We know that different populations are disproportionately impacted by HIV and have statistically poorer HIV related outcomes, such as young black men who have sex with men, and young women. How have you worked to develop staff’s understanding about unique issues impacting specific subpopulations affected by HIV?

25. Tell me about strategies you have for working with perinatally- compared with behaviorally- infected youth.

26. Tell me about strategies you have for working with younger youth (13-18) compared to older youth (19-24).

27. Can you describe how you think that your youth patients understand the importance of their care and treatment?

• Follow up:

  • How do you develop their abilities for self-management?

  • Are there opportunities for continued learning for youth?

28. How do you teach your patients, and assess their understanding of, the importance of viral suppression?

Collaboration with Youth and Families

Now we are going to talk a bit about working as partners with youth, and considering how you work with their families.

Collaborating with Youth

29. Do you think that youth /your target populations feel involved in their own treatment planning? Why or why not?

30. How do you make sure that youth patients are able to provide meaningful input into program planning efforts?

• Follow up:

  • Consumer advisory boards (CAB), town hall meetings, suggestion boxes, mentoring others, workshops, satisfaction surveys

  • What strategies do you use to enhance youth participation in CAB?

31. How is youth participation in peer groups?

• Follow up:

  • What are some successes you’ve seen with this effort?

  • How did you overcome challenges to create a successful youth engagement strategy?

Working with Families/Social Influences

32. What do you think are the biggest outside influences on your patients’ behavior with regards to engagement in care? What about with adherence?

• Patients’ families; social influences that impact patients’ behaviors (e.g. significant others, friends, religious/faith-based community)

• How do you work with families or those who have strong influences on youth?

• Are families and social supports part of the treatment planning process?

33. What do you think are the biggest influences within your clinic on your patients’ behavior with regards to engagement in care? What about with adherence?

Community Presence and Linkages

Community Presence and Linkages

34. How do you see your program’s presence and reputation in the community, including in the faith-based community and among other service-providing agencies?

• Follow up:

  • Do any staff provide direct outreach in the community and/or have presence at local events?

  • Does the clinic engage in any anti-stigma/discrimination campaigns?

35. What kind of strategies do you use to identify youth in the community who may be HIV-positive?

• Follow up:

  • Technology/social networking strategies, clinic’s own testing program, word of mouth or referral systems from testing sites or providers who see high risk negative youth

  • What is the number of new patients resulting from outreach and linkage activities?

36. Describe your linkages with agencies that provide services that you do not? (e.g. mental health, substance abuse, juvenile justice, housing, lawyers)? [refer to question 8 response from pre-survey]

• Follow up: Do you track referrals for these services?

Evaluation Efforts and Continuous Quality Improvement

Thank you for everything you have told us about your clinic. Lastly, we want to hear a little about your organization’s evaluation efforts.

37. What kinds of real-time data do you have on your overall clinic’s patient care and treatment information?

• Follow up:

  • How do you use the data collected through these systems?

  • Who reviews the data that is collected?

  • Are you able to review data in real-time versus summary reports? How long does it take to obtain data?

  • [PROVIDERS ONLY] How often are you able to access information on viral load and retention?

Wrap-up

38. Thank you so much for all of the information you have shared. Could you please summarize for me what you think the most important strategies you use that make you a high-performing provider?

39. What advice would you give to other providers interested in applying strategies from your program?

Thank you for taking the time to speak with us about your experiences. Is there anything else you would like to add before we end our discussion?

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