HOUSTON EMA & HOUSTON HSDA CARE CONSORTIUM
NEEDS ASSESSMENT REPORT
Special Study – Undocumented PLWH/A
Prepared for
Ryan White Title I Planning Council and the Houston HIV Service Delivery Area Care Consortium
October, 1999
Revised November 17, 1999
Submitted by: Partnership for Community Health, Inc.
245 West 29th Street
Suite 1202
New York, NY 10001
Primary Contact: Mitchell Cohen, Ph.D.
Executive Director
Partnership for Community Health
Telephone: 212.564.9790 X 26
Fax: 212.564-9781
E-mail:
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TABLE OF CONTENTS
1 INTRODUCTION 1-1
2 METHODS 2-1
Needs Assessment Survey and Focus Group 2-1
Process 2-1
Sampling 2-1
PLWH/A Survey 2-1
Demographic Profile of the Undocumented PLWH/A 2-2
3 TESTING AND PREVENTION 3-1
HIV Testing 3-1
Reported Methods of Reducing Risk for HIV Transmission from Sex 3-2
Using Condoms with Regular and Casual Partners 3-3
4 MEDICATION AND ADHERENCE 4-1
Medication 4-1
Adherence 4-1
Side Effects 4-2
5 OUTCOMES 5-1
Quality of Life 5-1
6 SERVICES 6-4
Dimensions of Service Need: 6-4
Most Needed Services 6-4
Medical Services 6-5
Drug Reimbursement FG Comments 6-5
Basic Services - Food, Rent and Utilities, and Housing 6-6
Transportation 6-6
Transportation FG Comments 6-6
Lab Tests 6-6
Case Management 6-6
Case Management FG Comments 6-7
Dental care 6-7
Dental care FG Comments 6-7
Mental Health 6-7
Mental Health Services FG Comments 6-7
Health Insurance Assistance 6-8
Assistance Finding Supportive Housing 6-8
Newsletters and Information 6-8
Service Awareness, Demand and Utilization 6-9
Graphic Presentation of Awareness, Demand and Utilization 6-9
Services Most Demanded and Utilized 6-10
Awareness - Demand Gap 6-10
Demand - Utilization Gaps 6-11
Service Satisfaction and Access 6-12
Graphic Presentation of Satisfaction and Access 6-12
Service Future Demand 6-13
Graphic Display of Anticipated Need 6-13
7 BARRIERS 7-1
Overall PLWH/A Score for Barriers 7-1
Organizational Access Barriers 7-2
Family Services 7-2
Reported to Authorities 7-3
Language - Focus Group Comments 7-3
Structural Barriers 7-3
Individual Barriers 7-4
Knowledge of Treatment Information Focus Group Comments 7-4
Location of Provider Focus Group Comments 7-4
8 Summary of Undocumented PLWH/A Needs and Barriers 8-1
Services 8-1
Barriers 8-3
9 ATTACHMENTS 5
NOTE: All attachments can be found behind the Needs Assessment Report: Survey and Focus Group Report of Consumers and Providers. 5
TABLES
Table 81 Top Needs, Rank Order 8-2
Table 82 Top Ten Barriers - Total vs. Undocumented PLWH/A 8-3
FIGURES
Figure 31 Place of Testing 3-2
Figure 32 Ways to Reduce Risk of HIV Infection 3-3
Figure 33 Frequency of Using Condoms 3-4
Figure 34 Reasons for Not Using Condoms 3-4
Figure 41 Medications 4-1
Figure 42 Reasons for Stopping Meds 4-2
Figure 43 Side Effects 4-2
Figure 44 Medication Taken by Undocumented PLWH/A 4-3
Figure 51 Quality of Life – Current Physical Health 5-3
Figure 52 Quality of Life – Current Emotional Health 5-3
Figure 61 Top 10 Needs of Undocumented 6-5
Figure 62 Services Awareness, Demand, and Utilization - Top 10 6-10
Figure 63 Total Sample Demand- Utilization Gap: Top 10 Services 6-11
Figure 64 Access and Satisfaction with Services - Top 10 6-13
Figure 65 Anticipated Need - Mean Score for Top 10 6-15
Figure 71 Average Barrier Scores for Undocumented PLWH/A – Top Ten 7-1
ATTACHMENTS
Attachment 1 Focus Group Outline 5
Attachment 2 PLWH/A Survey 5
Attachment 3 Undocumented PLWH/A Demographics 5
Attachment 4 Condom Use & Prevention Behaviors 5
Attachment 5 Top 10 Service Needs 5
Attachment 6 Service Awareness 5
Attachment 7 Service Demand 5
Attachment 8 Service Utilization 5
Attachment 9 Frequency of Service Usage 5
Attachment 10 Service Satisfaction 5
Attachment 11 Service Access 5
Attachment 12 Future Demand of Services 5
Attachment 13 Undocumented PLWH/A Barrier 5
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1 INTRODUCTION
The Ryan White Title I Planning Council and the Houston HIV Service Delivery Area Care Consortium contracted with the Partnership for Community Health (PCH) and the Office of Community Projects, University of Houston (OCP) to conduct a needs assessment and three special studies. The three special studies consisted of a report on the continuum of care, a special study of rural PLWA/H and a special study of undocumented PLWA/H. The needs assessment and the two special population studies identify service needs, gaps, and barriers for persons affected by HIV/AIDS in the Houston Eligible Metropolitan Area (EMA) and HIV Service Delivery Area (HSDA).
The goal of the needs assessment and special studies is to facilitate informed decisions regarding medical and support services for persons living with HIV/AIDS (PLWH/A) that are funded by the Ryan White CARE Act and other sources.
This supplemental report describes the findings of the special study among undocumented participants and presents information obtained through the survey and focus groups of undocumented PLWH/A and specifically addresses their perceived needs, demands, and barriers to care.
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2 METHODS
Focus groups, and a consumer survey were the major components of the special study among undocumented PLWH/A. The focus groups and consumer survey were sampled and recruited through the local service providers serving undocumented PLWH/A and through word of mouth among participants.
Needs Assessment Survey and Focus Group
Process
PCH/OCP staff met with the Council, Needs Assessment Committee and HIV Services Harris County Health Department (HSHCHD) to finalize the design of the needs assessment, including the sampling design, survey tools, focus group outlines, and field protocols.
The focus group outline is shown in Attachment 1 and the consumer survey is shown in Attachment 2. The lists of services developed by PCH/OCP and the Needs Assessment Committee were derived from the list of funded services and services priorities set by the Planning Council. They are shown in question 46 of the consumer survey. The list of barriers were developed based on prior needs assessments conducted by PCH using a multidimensional schema discussed in the Barriers Section, below. The questions related to barriers appear as question 47 of the consumer survey. Respondents also completed open-ended questions where they list needs and barriers.
For analysis purposes, the consumer survey captured demographic information, including stages of HIV infection, mode of transmission, socioeconomic indicators, and location of residency. The survey also measured co-morbidities of HIV with mental illness, sexually transmitted diseases (STDs) and tuberculosis (TB). In addition, the survey included questions related to HIV prevention and behavior.
A total of 24 focus groups were held with participants of different ethnicity/risk category populations. While five groups were “open groups ”, 19 groups were ethnic or risk category, including one group among undocumented PLWH/A. The open groups consisted of participants of diverse ethnic backgrounds and/or various risk categories who were recruited through newspaper advertisements and brochures announcing focus groups and word of mouth. The different ethnic groups were recruited from providers and through outreach. Focus groups were held between April 1999 and June 1999. The consumer surveys were completed between April 1999 and July 1999.
Sampling
PLWH/A Survey
The focus group and survey recruitment strategies were based on an overall sampling plan designed to draw a representative sample of clients from AIDS service organizations and clinics. Respondents of the focus group and respondents to the survey were recruited from 42 agencies serving PLWH/A, prevention outreach programs, and from organizations and venues known to serve undocumented, including day labor sites. A letter of agreement was created with a service organization serving African immigrants. However, no participant was recruited through this effort. In addition, in order to recruit PLWH/A who may not have accessed the AIDS service agencies, some respondents were also recruited through the outreach efforts of organizations providing HIV prevention services and from community clinics within hospitals.
For the focus groups, the sampling goal was to have ten persons in each of the focus groups representing a broad spectrum of people living with HIV/AIDS. The recruitment of focus group participants represented part of the larger sampling of PLWH/A for the survey that was being conducted simultaneously. Individuals agreeing to participate in the focus groups were asked to complete the needs assessment survey prior to the focus groups. Interviewers were instructed to ask all non-US citizens about their residency status. Undocumented PLWH/A therefore included all participants who reported being undocumented or not having a legal residency status in the United States. Six people, three men, three women, participated in the focus group for undocumented PLWH/A. The focus group was conducted in Spanish by Ms. Lucía Orellana. A total of 31 undocumented PLWH/A completed the survey.
For a full description of the logistics and methodology of the focus groups and survey refer to the full needs assessment report.
Demographic Profile of the Undocumented PLWH/A
Out of 455 people living with HIV/AIDS who completed surveys, 31 participants (5% of the total weighted sample) were undocumented PLWH/A. As this represents a very targeted group they are not comparable to the general sample and because of the sample size the findings should be not considered generalizable to the population of undocumented PLWH/A in Houston.
· The undocumented participants are mostly heterosexuals and not very similar to the overall sample. Thirty-six percent of the undocumented are MSM, 65% are heterosexuals and seven percent are IDUs. This is compared to 62%, 34% and 28% of the total sample who fall within each of the categories, respectively.
· The majority (65%) of the undocumented participants are male, yet, women are still over-represented among this group. The total sample is 82% male and 18% female. .
· Twenty out of thirty-one undocumented PLWH/A are Latinos. Five are either Caribbean black, Indian, or other multi-cultural ethnicity.
· Nearly one third of the undocumented participants have only a grade school education, compared to less than six percent of the total sample.
· Undocumented participants are more likely to be married or living with a partner than members of other target groups. Thirty-nine percent are married or living with a partner, compared to 20% of the total sample.
· Unlike participants in the overall sample with 52% having their own place, less than 20% of the undocumented participants have their own place. More than 60% of the undocumented participants live in a relative’s or someone else’s place. More than 85% live with other people and a large percentage (77%) receive some form of assistance in paying the rent.
· Three undocumented participants have an HIV positive partner.
· Less than 13% of the undocumented have been in prison or jail over the past two years compared to about 30% of the overall sample.
· Similarly, less than 14% have been homeless over the past two years, compared to 23% of the participants in the total sample.
· One quarter of the undocumented participants are currently employed in some capacity, part or full time.
· Less than 13% of the undocumented PLWH/A have any form of health insurance. Two people reported having Medicare and two have Medicaid. Three report having some other type of insurance.
· Undocumented PLWH/A receive few benefits or entitlements. The top three benefits received are food stamps (19%), social security income (16%) and rent supplements (16%).
· Seventy-seven percent receive assistance obtaining their HIV medications. Out of those who receive assistance, 65% report receiving ADAP/TDH and 50% receive other type of assistance, namely MAP.
· Fifty-two percent are asymptomatic, forty-five percent have symptoms and three percent are unaware of their HIV status. This is almost the inverse of the overall sample, with 45% asymptomatic and 54% symptomatic PLWH/A. Thirty-five percent of the undocumented participants have an AIDS diagnosis compared to 54% of the overall sample. Seventy-one (71%) of the undocumented participants are currently taking HIV medications compared to 82% of the total sample.
· Less than 20% of the undocumented report any STD. The most common types of STDs are herpes (19%), syphilis and gonorrhea, both at 13%.
· Two undocumented individuals report having active tuberculosis which is being treated.
· The most common substances used by undocumented individuals are the same as those reported by the overall sample but are reported at a lower level. They include alcohol (77%), marijuana (39%) and cocaine (36%).
· Seventy-seven percent of the undocumented PLWH/A report an annual income of less than $6000 compared to about half of the total sample with that income.
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3 TESTING AND PREVENTION
In the survey, a series of questions were asked about where PLWH/A are tested for HIV, their frequency of sex, frequency of needle sharing, and the use of condoms. These responses suggest the number of PLWH/A who may put others at risk for HIV or re-infection, or the percentage of HIV positive persons who use a condom and therefore engage in one method of safer sexual behavior.[1] Responses to the prevention questions are shown in Attachment 4. Graphic representations of several questions are presented and discussed below.
HIV Testing
For the undocumented PLWH/A the most popular places for HIV testing are community clinics, hospital clinics, and counseling and testing centers.
As shown in Figure 31, almost 52% of the undocumented participants report receiving their test at a community clinic (black line). This is very similar to the overall total weighted sample who report about 50% using this as their testing site. About 25% of undocumented PLWH/A report being tested at least twice (not shown in graph).
The second most common testing site for undocumented PLWH/A is a hospital clinic. About 43% report being tested in hospital clinics and about 10% say they were tested more than once.
Although reported as the third most common testing site, only slightly over 20% of the undocumented participants were tested in a counseling and testing center. This lower use, as compared to the overall total, may reflect undocumented PLWH/A’s lower awareness of these testing sites or their greater concern about confidentiality and being reported to the authorities. Undocumented participants are three times less likely to be tested by a private doctor than are participants in the overall sample.