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Title: Consumer%20Focus%20Group%20Results

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
  • 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
  • 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

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

  • 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

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

Focus Group Logistics
  • Dates April 10, 11, 24, 25
  • Location Cicatelli Associates (MN)
  • Participant Residences All 5 boros
  • Quantity 5 (N39)
  • 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 Mens Only group
accidentally and was allowed to participate
Participant Race and Gender (n 39)
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
  • Which services do you think have the most lasting
    effect on HIV-related care and health outcomes?

  • 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
  • 3) Overall satisfaction with HRSA core support
  • 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

Cross-group Analysis (n39) Section 1
Assessment of Services Percentage scoring
service as Essential
Cross-group Analysis (n39) Section 1
Assessment of Services (contd) Most Important
Services (forced choice)
Cross-group Analysis (n39) Section 1
Assessment of Services (contd)
  • Services with the most lasting effect on
  • HIV-related health outcomes

Core Services Support Services

Medical Case Management Health Education/Risk Reduction
Mental Health Housing
Outpatient/Ambulatory Medical Care Linguistic Services
Medical Transportation
Outreach Services
Psychological Support Services
Rehabilitation Services
Treatment Adherence Counseling
Key Quotes Section 1 Assessment of Services
  • Please tell me how important or useful the
    service category is for PLWHA to access primary
  • Another important intervention with ADAP has
    been over the years for many of us who have
    worked our whole lives before we got sickwe
    cant maintain Medicaid, and ADAP worked it out
    where they pay the spend down every month that we
    maintain Medicaid. And even today after
    everything thats been changed with Medicarethey
    continue to help pay the spend down.
  • Adult Male, Mens FG
  • Because housing is the foundation that holds
    everything together. If you dont have proper
    housingif youre homeless and you cant cook for
    yourself, then you cant maintain your health.
    You might have to keep your meds in the
    refrigerator. So I think itsvery essential.
    Its like the nucleus of everything.
  • Adult Female, Womens FG
  • Housing is healthcare
  • Adult Male, Mens FG

Cross-group Analysis (n39) Section 2
Identification of Gaps in Services
  • Services currently under-delivered in NYC
  • (least available or accessible)

Core Services Support Services

Health Insurance Premium Cost Sharing Assistance Child Care Services
Medical Nutrition Heath Education/Risk Reduction
Mental Health Linguistic Services
Oral Health
Key Quotes Section 2 Identification of Gaps in
  • Which services to you think are currently
    under-delivered (least available or accessible)
    in New York City?
  • Wellsome place they take out healthy teeth. You
    know, if its 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. Thats all they want to do is
    take out teeth and you cant get no one to just
    treat the problem. So thats my problem. Oral
    Healthcare is horrible. And you cant go to a
    good dentist so you end up in one of these little
    backdoor thingy places for work on your teeth and
    its 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 clinicits
    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, Womens FG

Cross-group Analysis (n39) Section 3 Overall
Satisfaction with Services
  • Services providing the greatest client
    satisfaction rates

Core Services Support Services
ADAP Non-Medical Case Management
Outpatient/Ambulatory Medical Care Health Education/Risk Reduction (youth group)
Medical Nutrition (womens group) Housing (youth group)
Cross-group Analysis (n39) Section 3 Overall
Satisfaction with Services (contd)
  • Services providing the lowest client satisfaction

Support Services
Medical Transportation
Health Education/Risk Reduction
Food Bank/Home-delivered Meals
Linguistic Services
Child Care Services (womens group)
Key Quotes Section 3 Overall Satisfaction with
  • Which service categories do you think provide the
    lowest satisfaction rates? What should change?
  • I just want to say inadequate housing. While
    theres money being poured into housing, its
    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. Youve got to see these places
  • Adult Female, Womens 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. Theres no respect. They yell at
    people. Theyre disrespectful. Its really
  • Adult Male, FG 2

Cross-group Analysis (n39) Section 4A
Underserved Geographic Areas
Southeast Bronx
Pelham Parkway
Throgs Neck
Central Harlem
Whitestone Bridge Area, Bronx
East Harlem
East New York
Crown Heights
Far Rockaway
Sunset Park
East Flatbush
Parts of Staten Island
Coney Island
Prevalence of HIV by NYC neighborhood, 2006
Cross-group Analysis (n39) Section 4A (contd)
Services Under-delivered in Geographic Areas
Core Services Support Services

Early Intervention Services Health Education/Risk Reduction
Linguistic Services
Outreach Services
Cross-group Analysis (n39) 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

Key Quotes Section 4 Geography and Special
  • 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
  • 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

  • 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
  • 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.

Conclusions (contd)
  • 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
  • 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
  • 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

  • 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

  • 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.

Next Steps
  • 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

  • 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)