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)