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1
Preliminary Consumer Focus Group Results
Mary Irvine, DrPH1
Anthony Santella, DrPH1
Craig Fryer, DrPH2
1 NYC DOHMH, HIV/AIDS Care, Treatment, and Housing Program2 University of Pittsburgh School of Public Health
PSRA Committee Data DayJune 5, 2008
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 CAB Survey instrument, results, limitations
Discussion guide development and review by Consumer Committee and PLWHA Advisory Group
DOHMH IRB review
Planning Facilitator Membership Logistics
Group facilitation (and recording and transcription of sessions, as well as simultaneous note-taking)
Data analysis
Draft report and presentation
5
A Closer Look at Data Analysis… Sources
Audio tapes Transcripts Notetaker observations
Analysis process Data review Data coding, categorization and organization 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)
* One woman attended “Men’s Only” group accidentally and was allowed to participate
7
Participant Race and Gender (n= 39)
64%
36% Male
Female
3%
15%
26%51%
5%
Black
White
Latino/aAsianBiracial
Race Gender
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 primary care?
Please tell me how important or useful this service category is for people with HIV to remain in primary care?
How well does this service meet the needs of PLWHA?
9
Preliminary Results
The following slides will discuss only one part of the focus group– assessment of HRSA core and support service categories 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 also selected the three most important core and support services
10
Focus Group #1 (Mixed Adult; n=7):Percentage ranking service as “Essential”
85.7% 85.7% 85.7% 85.7% 85.7% 85.7%
71.4%
60.0%
65.0%
70.0%
75.0%
80.0%
85.0%
90.0%
ADAP Mental Health Oral Health Outpatient/AMC EmergencyFinancial
Assistance
Housing PsychologicalSupport
Core Support
Group 1
11
Focus Group #1 (Mixed Adult; n=7):Most Important Services (forced choice)
In Top 3
100.0%
71.4%
42.9%
85.7%
42.9%
28.6% 28.6% 28.6%
0.0%
20.0%
40.0%
60.0%
80.0%
100.0%
120.0%
Outpatient/AMC Mental Health ADAP Housing PsychologicalSupport
Case MgmtNon-Medical
EmergencyFinancial
Assistance
TreatmentAdherenceCounseling
Core Support
Group 1
12
Focus Group #2 (Mixed Adult; n=10):Percentage ranking service as “Essential”
90.0%
80.0% 80.0% 80.0%
100.0%
90.0%
70.0% 70.0% 70.0%
0.0%
20.0%
40.0%
60.0%
80.0%
100.0%
120.0%
Sub
stan
ceA
buse
AD
AP
Men
tal H
ealth
Out
patie
nt/A
MC
Lega
l Ser
vice
s
Tre
atm
ent
Adh
eren
ceC
ouns
elin
g
Em
erge
ncy
Fin
anci
alA
ssis
tanc
e
Hou
sing
Ref
erra
l for
Hea
lthC
are/
Sup
port
ive
Core Support
Group 2
13
Focus Group #2 (Mixed Adult; n=10):Most Important Services (forced choice)
80.0%
40.0% 40.0%
70.0%
50.0%
40.0%
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
ADAP Mental Health Outpatient/AMC Housing Health Education/ RiskReduction
Psychological Support
Core Support
Group 2
14
Focus Group #3 (Women; n=7):Percentage ranking service as “Essential”
100.0% 100.0% 100.0% 100.0% 100.0%
85.7% 85.7% 85.7% 85.7%
75.0%
80.0%
85.0%
90.0%
95.0%
100.0%
105.0%
AD
AP
Men
tal H
ealth
Ora
l Hea
lth
Out
patie
nt/A
MC
Lega
l Ser
vice
s
Em
erge
ncy
Fin
anci
alA
ssis
tanc
e
Hea
lthE
duca
tion/
Ris
kR
educ
tion
Ref
erra
l for
Hea
lthC
are/
Sup
port
ive
Tre
atm
ent
Adh
eren
ceC
ouns
elin
g
Core Support
Group 3
15
Focus Group #3 (Women; n=7):Most Important Services (forced choice)
71.4% 71.4%
57.1%
85.7%
42.9%
28.6% 28.6% 28.6% 28.6%
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
AD
AP
Ora
l Hea
lth
Out
patie
nt/A
MC
Hou
sing
Hea
lthE
duca
tion/
Ris
kR
educ
tion
Chi
ld C
are
Em
erge
ncy
Fin
anci
alA
ssis
tanc
e
Psy
chol
ogic
alS
uppo
rt
Sub
stan
ceA
buse
Ser
vice
s
Core Support
Group 3
16
Focus Group #4 (Youth; n=5):Percentage ranking service as “Essential”
100.0%
80.0% 80.0% 80.0% 80.0% 80.0% 80.0%
100.0%
80.0% 80.0%
0.0%
20.0%
40.0%
60.0%
80.0%
100.0%
120.0%
Men
tal H
ealth
AD
AP
AID
SP
harm
aceu
tical
Ass
ista
nce E
IS
Hom
e &
CB
Hea
lth
Med
ical
Cas
eM
anag
emen
t
Out
patie
nt/A
MC
Em
erge
ncy
Fin
anci
alA
ssis
tanc
e
Hea
lthE
duca
tion/
Ris
kR
educ
tion
Lega
l Ser
vice
s
Core Support
Group 4
17
Focus Group #4 (Youth; n=5):Most Important Services (forced choice)
100.0%
80.0%
60.0% 60.0% 60.0%
40.0% 40.0% 40.0%
0.0%
20.0%
40.0%
60.0%
80.0%
100.0%
120.0%
Mental Health ADAP EIS HealthEducation/ Risk
Reduction
PsychologicalSupport
EmergencyFinancial
Assistance
OutreachServices
TreatmentAdherenceCounseling
Core Support
Group 4
18
Focus Group #5 (Men; n=10):Percentage ranking service as “Essential”
90.0% 90.0%
80.0%
100.0%
88.9%
77.8%80.0%
0.0%
20.0%
40.0%
60.0%
80.0%
100.0%
120.0%
ADAP Mental Health AIDSPharmaceutical
Assistance
Medical CaseManagement
Legal Services EmergencyFinancial
Assistance
Health Education/Risk Reduction
Core Support
Group 5
19
Focus Group #5 (Men; n=10):Most Important Services (forced choice)
40.0% 40.0% 40.0%
90.0%
55.6%
30.0%
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
Outpatient/AMC ADAP Mental Health Housing Emergency FinancialAssistance
Case Mgmt Non-Medical
Core Support
Group 5
20
Cross-group Analysis (n=39):Percentage ranking service as “Essential”
89.7%
82.1%84.2%
71.1%
87.2%87.2%
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
100.0%
Mental Health ADAP Outpatient/AMC Legal Services Emergency FinancialAssistance
Treatment AdherenceCounseling
Core Support
All
21
Cross-group Analysis (cont.; n=39):Most Important Services (forced choice)
61.5%
51.3%48.7%
74.4%
36.8% 36.8% 36.8%
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
ADAP Outpatient/AMC Mental Health Housing EmergencyFinancial
Assistance
Health Education/Risk Reduction
PsychologicalSupport
Core Support
All
Key Quotes: Outpatient/Ambulatory Care
Well, if one expects to live, one has to constantly see their healthcare provider to see where one’s body’s going…to see what changes one needs to make whether it’s in lifestyle or in nutrition to try and stay healthy (Adult male)
I think because outpatient is a place that people can go and leave and get attention, you know, like medical and things like that because there’s too many people in the street. That’s why they have a lot of homeless, too, in the street (Adult Male)
Key Quotes: ADAP
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)
…I understand that if someone happens to have insurance and they’re being taken off that insurance…I can call the insurance company, have them tell me how much the insurance would be, make the first payment and supposedly ADAP would repay me for that and handle the payments after that (Adult male)
Key Quotes: Mental Health
[People often ask what was] the first thing you thought…that you were going to die, and it wasn’t the first thing I thought…And the truth is…[His first thought] who’s going to love me?…the truth is you [have to have] 100 percent security with yourself and through mental healthcare… (Young Male)
…Outside of your medical care, [mental health is] the most important component on how to deal with this illness, and my concern is that in the last few years, there’s a lot of talk about looking at just statistics…and since mental health is something that’s a little more obtuse, it’s hard to…see actual figures…because for me…without mental health services, I wouldn’t be sitting at this (Adult Male)
Key Quotes: Housing
Once you house the individual, you can start to take care of the person as a whole. If a person has stable supportive clean housing, you can do a lot more with that individual. You can go on to your nutrition; your PCP depending on what your PCP is, your psychological, whatever it is. But once that person is housed, that gives a person…(Adult Female)
It gives a person dignity and a safe environment in order for us to properly service the individual (Adult Female)
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)
Housing equals healthcare (Adult male)
Key Quote: Oral Health
…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)
Key Quote: Emergency Financial Assistance
…I knew that this money was meant for me to take care of myself, go to see the doctor, go to my support group... That made me feel I had a purpose…and to pay my rent, the phone bill, those were very important to me all of a sudden, even though I was doing it years ago. But all of a sudden with this HIV, it seemed like a whole new thing opened up for me where it was about self and taking of self (Adult Female)
28
Conclusions Consumers’ voices should be heard and their needs
should be incorporated into the Ryan White planning process
Integration of services is vital for all populations; if a consumer cannot “one-stop shop” they are less likely to adhere to a medical and/or medication plan
Consistently selected in the ranking and forced choice exercises:
ADAP, Outpatient/Ambulatory Care, and Mental Health Housing services and Emergency Financial Assistance
29
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 need to be addressed as part of the data analysis
30
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
31
Acknowledgements
Focus group participants
Planning Council Consumer Committee PLWHA Advisory
Group Jennifer Irwin (HEAT
Program) – Youth Recruitment
Craig Fryer (U. Pitt)- Facilitator; Data Analysis
DOHMH Jackie de Vegvar (notetaker) Godfrey Echendu (notetaker) Mary Irvine (discussion guide
development and presentation) Judith Kirkland (logistics) Ralph Molina (recruitment) Jan Carl Park (PC Support) Anthony Santella
(Implementation and presentation)
Darryl Wong (logistics and recruitment)