Building Futures: Supporting Youth Living with HIV

Instrument 4. Program Manager and Clinical Director Interview Guide (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.

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.

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 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 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]. Could you provide more information about the youth you provide services to?

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

Overall Thoughts

We have come to visit your clinic to learn what some of the challenges are that you may be encountering, particularly when it comes to retaining youth in care and helping them achieve viral suppression. We are also here to provide technical assistance and work with you on to identify strategies that could improve retention and viral suppression rates.

5. Could you please describe how your clinic works to keep youth retained in care?

   • Follow up: Have you tried or considered any other methods that you think might help in this area?

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

7. Could you please describe how your clinic works to help youth achieve viral suppression?

• Follow up: Have you tried or considered any other methods that you think might help in this area?

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 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.What sorts of financial issues arise with your youth patients, ranging from h omelessness to not having funds to cover transportation? How do patients pay for their cost share?

• Follow up: How do you work with patients to address potential financial issues?

• Follow up: Reimbursements for transportation, Insurance navigation services, cost plans/options for appointments and medications, telehealth/telebehavioral health

• Follow up: How do you address state insurance policies? What are your systems for reimbursement for un-inured patients?

• Follow up: Are these systems in place before patients come to the clinic?

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? Our understanding based on information that we obtained from your site before we arrived was that you [clinic scheduling process here]. Can you tell me a little more about the process?

• Follow up:

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

  • Specifically, how do you think this addresses the specific need of youth?

  • Do you need different approaches for different youth subpopulations?

  • What are existing challenges with the scheduling process?

  • What do you do to reduce barriers to scheduling? (e.g. follow up calls/reminder notices, texting, social media, Facebook)

High-Risk Patients

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.

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

• Follow up:

  • Are there any triggers in your medical records systems (e.g. if someone misses appointments)?

Once you have identified a patient as high-risk for dropping out of care or non-adherence, what do you do? How does your strategy differ by type of youth? Do you feel your clinic is more successful in retaining certain types of youth than others?

Youth-Friendliness

11. Tell me about your efforts – in terms of both training staff and the clinic space – to make your clinic environment inviting and appealing to youth?

• Follow up: youth friendly hours, clinic feels like a safe space, clinic provides amenities appealing to youth

12. How does your clinic use social media and technology to communicate with youth patients? How do you analyze social network data?

Confidentiality

13. What policies do you have in place to keep your youth patients’ information confidential?

• Follow up:

  • What does your program do to make patients feel that their information is kept confidential?

How do you address issues of confidentiality and privacy from families when dealing with billing health insurance? Do you have issues with Explanation of Benefits (EOB) letters?

14. For youth who are minors, 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?

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

• Follow up: What state policies affect youth’s ability to receive confidential care?

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.

Models of Care

15. 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.

16. 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)

• Mental health services

• Substance abuse services

• ADAP enrollment

• Health insurance enrollment

• Cost sharing support

• Food support

• Transportation

• Peer support/navigation

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

• 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.

17. 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 they shared with other programs?

18. What is staff turnover like among clinicians at the organization? How about among support staff such as case managers?

• Follow up:

  • What happens when someone leaves?

  • What happens to that person’s patients?

  • How long does it take to replace staff?

  • What happens in the meantime?

19. How do you ensure that staff at your clinic have knowledge and skills in areas such as adolescent health and cultural competency?

Follow up: general staff hiring practices, including: how they recruit for jobs; what skills and knowledge they require (e.g. adolescent health, cultural competency); how they maintain cultural competency (e.g. race, ethnicity, language, sexual orientation/gender identity, anti-stigma and discrimination); are these areas important to you; how do you train staff in these areas?

Evidence-Based Interventions

20. As you know, there is a lot of talk about evidence-based interventions and promising practices. Please tell us more about your use of the following interventions [use responses from question 39 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 _______________

21. How does the clinic keep teams up-to-date with recent information and treatment advances?

22. [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

23. 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?

24. Please tell me about how your clinic transitions youth 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

25. 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?

26. 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?

27. There are so many areas of diversity among patient populations: age, gender identity, sexuality, race, ethnicity, family structure, 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?

28. 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?

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

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

31. 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?

Collaboration with Youth and Families

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

Collaborating with Youth

32. How do you engage youth /your target populations in their own treatment planning?

• Follow up:

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

33. To what extent do you work with youth to address basic life needs beyond their viral suppression?

34. 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?

35. How do you incorporate youth peer support groups into your organization’s work?

• 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

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

• Follow up:

  • 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 patients?

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

37. 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

38. 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?

39. 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?

40. What types of links do you have with local schools? What about with community based organizations?

• Follow up: Give examples of the most effective partnerships you have with CBOs

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

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

42. What local programs, if any, exist to help with medication adherence? (e.g. community health workers, Directly Observed Therapy (DOT), peer navigators)

• Follow up: Do you have linkages with these programs?

43. Are there groups in your area that work on policy related to HIV and youth?

• Follow up: Does anyone from your organization participate in coalitions that work on policy change?

Evaluation Efforts and Continuous Quality Improvement (CQI)

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

44. What systems and strategies have been implemented by [PROVIDER ORGANIZATION] to monitor and evaluate youth patients? Specifically, describe how you measure the following:

• Access and linkage to HIV care?

• Engagement and retention in HIV care?

• Satisfaction with [PROVIDER ORGANIZATION’S] services?

45. What special projects, evaluations, or quality improvement initiatives, if any, have been conducted to evaluate the effectiveness of your organization’s efforts to improve youth HIV care?

46. What kinds of data do you have on your overall clinic’s performance related to patient care and treatment?

• Follow up:

  • Do you have a distinct program evaluation for youth or is it part of a larger program evaluation?

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

  • Do you have a formal QI process in place at your clinic?

  • Who reviews the data that is collected?

  • Do you have access to data in real time?

  • How often are you able to access information on viral load and retention?

Wrap-up

47. Thank you so much for all of the information you have shared. What would you like to hear from your peers on how to improve rates of retention and viral suppression? What do you think would be useful for technical assistance in this area?

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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