Consumer Focus Group Results

1. Consumer Focus Group Results Mary Irvine, DrPH1 Anthony Santella, DrPH1 Craig Fryer, DrPH2 1 NYC DOHMH, HIV/AIDS Care, Treatment, and Housing Program 2 University of Pittsburgh School of Public Health Ryan White Planning Council Consumer Committee and PLWHA Advisory Group June 2008 Dr. Irvine – project design & reporting; Dr. Santella – implementation & reporting; Dr. Fryer – facilitation, data analysis, reporting

2. Background • To ensure that Ryan White Part A service priority recommendations are in line with consumer needs • To provide consumers with another vehicle to have their voices heard in the Part A planning process

3. Why Focus Groups? • Relatively easy to assemble, inexpensive and flexible in terms of format, types of questions and desired outcomes • Appropriate when the goal is to learn from the perspectives and opinions of participants • Good for groups with different literacy levels • Open recording allows participants to confirm their contributions • Provide rich data through direct interaction between moderator and participants • Spontaneous, participants not required to answer every question; able to build on one another's responses

4. Methods • Review of Community Advisory Board Survey, results, limitations • Discussion guide development and review by Consumer Committee and PLWHA Advisory Group • DOHMH Institutional Review Board review • Planning • Facilitator • Membership • Logistics • Group facilitation (and recording and transcription of sessions, as well as simultaneous note-taking) • Data analysis • Produce report and presentation

5. A Closer Look at Data Analysis… • Sources • Audio tapes • Transcripts • Notetaker observations • Analysis process • Qualitative and quantitative data review • Qualitative data coding and organization • Quantitative data compilation and frequencies • Interpreting data • Preparing reports and presentations

6. Focus Group Logistics • Dates: April 10, 11, 24, 25 • Location: Cicatelli Associates (MN) • Participant Residences: All 5 boros • Quantity: 5 (N=39) • Adults only (4) • Mixed men and women (2) • Women only (1) • Men only (1)* • Youth only (1) • Incentives: $30 Metrocard and Meal * One woman attended “Men’s Only” group accidentally and was allowed to participate

7. 3% 5% 15% Black White Latino/a 26% Asian 51% Biracial Participant Race and Gender (n= 39) Race Gender

8. A Closer Look at the Facilitation/Process • The Assessment of Services • For each of the services listed, please tell me how important or useful the service category is for PLWHA to access and remain primary care? • How well does this service meet the needs of PLWHA? • Which services do you think have the most lasting effect on HIV-related care and health outcomes?

9. Results • The following slides reflect data from the four sections of the focus group: 1) Assessment of HRSA core & support services 2) Identification of gaps in HRSA core & support services 3) Overall satisfaction with HRSA core & support services 4) Geography & special populations • Participants prioritized both core and support services by assigning a number (1 – not very important, 2 – somewhat important, or 3 - essential) to each core and support service • Participants were then asked to select the three most important core and support services

10. Cross-group Analysis (n=39):Section 1: Assessment of Services Percentage scoring service as “Essential”

11. Cross-group Analysis (n=39):Section 1: Assessment of Services (cont’d)Most Important Services(forced choice)

12. Cross-group Analysis (n=39):Section 1: Assessment of Services (cont’d) Services with the most lasting effect on HIV-related health outcomes Core Services Support Services

13. Key Quotes: Section 1: Assessment of Services Please tell me how important or useful the service category is for PLWHA to access primary care. Another important intervention with ADAP has been over the years for many of us who have worked our whole lives before we got sick…we can’t maintain Medicaid, and ADAP worked it out where they pay the spend down every month that we maintain Medicaid. And even today after everything that’s been changed with Medicare…they continue to help pay the spend down. Adult Male, Men’s FG Because housing is the foundation that holds everything together. If you don’t have proper housing…if you’re homeless and you can’t cook for yourself, then you can’t maintain your health. You might have to keep your meds in the refrigerator. So I think it’s…very essential. It’s like the nucleus of everything. Adult Female, Women’s FG Housing is healthcare Adult Male, Men’s FG

14. Cross-group Analysis (n=39):Section 2: Identification of Gaps in Services Services currently under-delivered in NYC (least available or accessible) Core Services Support Services

15. Key Quotes:Section 2: Identification of Gaps in Services Which services to you think are currently under-delivered (least available or accessible) in New York City? Well…some place they take out healthy teeth. You know, if it’s just a little scrape, like a little scrape on your teeth, they wan to take out a healthy tooth…. I mean, instead of them just fixing it, filing it down or whatever, they want to take out teeth. That’s all they want to do is take out teeth and you can’t get no one to just treat the problem. So that’s my problem. Oral Healthcare is horrible. And you can’t go to a good dentist so you end up in one of these little backdoor thingy places for work on your teeth and it’s ridiculous. Adult Female, FG 1 …there was only one individual who ran a dental clinic for HIV positive individuals at a specific hospital I was attending. And once she retired, there was no specific dental and HIV clinic…it’s really important to – and I guess there is no funding for it, to have specific – and this woman did it, I think, out of her own pocket, started a clinic specifically for HIV positive individuals. Adult Female, Women’s FG

16. Cross-group Analysis (n=39):Section 3: Overall Satisfaction with Services Services providing the greatest client satisfaction rates Core Services Support Services

17. Cross-group Analysis (n=39):Section 3: Overall Satisfaction with Services (cont’d) Services providing the lowest client satisfaction rates Support Services

18. Key Quotes:Section 3: Overall Satisfaction with Services Which service categories do you think provide the lowest satisfaction rates? What should change? …I just want to say inadequate housing. While there’s money being poured into housing, it’s inadequate. And if we talk about places like HASA, that sends people to these single room occupancies, oh, my God, oh, my God, I just have to say. You’ve got to see these places… Adult Female, Women’s FG I am disabled and in a motorized scooter now for five years, and I will tell you first hand the ambulance service from the hospital and stress-a-ride are the most disgusting, gross unacceptable transportation. People are treated like sub-human. There’s no respect. They yell at people. They’re disrespectful. It’s really disgusting. Adult Male, FG 2

19. Southeast Bronx Cross-group Analysis (n=39):Section 4A: Underserved Geographic Areas Pelham Parkway Throgs Neck Central Harlem Whitestone Bridge Area, Bronx East Harlem East New York Flushing Crown Heights Jamaica Far Rockaway Sunset Park East Flatbush Parts of Staten Island Coney Island Prevalence of HIV by NYC neighborhood, 2006

20. Cross-group Analysis (n=39):Section 4A (cont’d) : Services Under-delivered in Geographic Areas Highlighted Core Services Support Services

21. Cross-group Analysis (n=39):Section 4B: Underserved Populations • Undocumented or illegal immigrants • Transgender population • “Throw Away” youth • Persons 55-70 years • Young Mothers • Women who have sex with women

22. Key Quotes:Section 4: Geography and Special Populations Which specific PLWHA populations or geographic areas of NYC do you think are currently under-represented with available/funded services? …in the HIV community.....and it's just sad for the..... towards the lesbian community and the HIV.....I love my gay boys, but it's just they're getting too much..... the separation.....they need to share it with us [WSW], stop being selfish, sharing is caring.....with us. They need to..... Young Woman, Young Adult FG Coney Island. For the past couple of years, they've been under represented, especially with the CARE networks, they do not cover Coney Island. I know that only one agency is covering the entire -- Brooklyn's going to be even worse. Adult Male, FG 2

23. Conclusions • Consumers’ voices should be heard and their needs should be incorporated into the Ryan White planning process • Some of the most valued services were also those identified as lacking in quality or availability • Unintended Consequence of the Chronic Disease Model • Consumers feel their needs have become second priority. The shift in the epidemic towards a more chronic disease management course focused attention away from the consumer and placed it on facets of the medical institution. • The Need for the Integration of Services • “One stop shop” comprehensive clinical and support services better suited to the adherence and medical needs of consumers.

24. Conclusions (cont’d) • Assessment of Services • Participants consistently selected the following services in the ranking (Essential) and forced choice (Most Important) exercises: • Mental Health, ADAP, and Outpatient/Ambulatory Care (Core) • Housing services, Emergency Financial Assistance (Support) • Identification of Gaps in Service • Oral Health consistently viewed as a defunded service category that no longer has dentists specializing in working with HIV-positive populations. • Overall Satisfaction with Services • Consumers are most satisfied with ADAP and Outpatient/Ambulatory Medical Care • Housing is indicated as a service with poor consumer satisfaction. Additionally, Medical Transportation also consistently reported as a service with poor consumer satisfaction. • Geography and Special Populations • NYC geographic areas with high prevalence of HIV are lacking services • Stigmatized populations (transgender, undocumented/illegal, etc.) are in need of services

25. Recommendations • Routine and systematic reviews of all services • The focus of the review must be on the needs of the consumer • Future delivery and administration of services must include the voice of the consumer

26. Limitations • Findings may not represent the views of larger segments of the PLWHA population in NYC • Requires good facilitation skills, including ability to handle various roles people may play • Rich textual data may be difficult to analyze because it is unstructured • Possible conformance, censoring, conflict avoidance, or other unintended outcomes of the group process were acknowledged as having the possibility to skew the data. The facilitator attempted to address these concerns through various techniques (probes, encouraging participants to speak their minds, etc.) in order to reduce the impact of theses biases.

27. Next Steps • DOHMH • Finalize Report • To be released to Consumer Committee and AG first; then sent to all PC members • Plan for 2009 • More focus groups! • Spanish translation • Non-PC aligned participants • PSRA • Consider findings in priority setting exercise

28. Focus group participants Planning Council Consumer Committee PLWHA Advisory Group Jennifer Irwin (HEAT Program) – Youth Recruitment DOHMH staff Jackie de Vegvar (notetaker) Godfrey Echendu (notetaker) Judith Kirkland (logistics) Ralph Molina (recruitment) Jan Carl Park (PC Support) Darryl Wong (logistics and recruitment) Consultants Alexandra Duncan (2nd data analyst & report/presentation editor) Acknowledgements