Looking for a Place to Call Home:Looking for a Place to Call Home:A Needs Assessment of Asians and Pacific A Needs Assessment of Asians and Pacific Islanders Living with HIV/AIDS in the New Islanders Living with HIV/AIDS in the New York Metropolitan AreaYork Metropolitan Area

John J. Chin, Ph.D.

Associate Professor

Department of Urban Affairs and Planning

Hunter College, City University of New York

This research was made possible by grant number 2 H89 HA 00015-14-00 from the U.S. Health Resources and Services Administration (HRSA) HIV/AIDS Bureau, with the support of the HIV Health and Human Services Planning Council, through the New York City Department of Health & Mental Hygiene and Medical and Health Research Association of New York City, Inc. Its contents are solely the responsibility of the Researchers and do not necessarily represent the official views of the U.S. Health Resources and Services Administration, the City of New York, or Medical and Health Research Association of New York.

Research Team/ContributorsResearch Team/Contributors

Research Team John J. Chin, PhD, Principal Investigator David Abramson, PhD (Columbia University) Angela Aidala, PhD (Columbia University) Nick Bartlett, MIA Elana Behar, MS Sara Berk, MPH (Columbia University) Yu-Kang Chen, MA (APICHA) James Egan, MPH Ezer Kang, PhD (New York Presbyterian Hospital) Andrea King, MPH (Columbia University) Jeannine Melly, MPH Tasha Stehling, MPH (Columbia University) Nicole Tsang Linda Weiss, PhD

Research Team/ContributorsResearch Team/ContributorsCommunity Partners Asian & Pacific Islander Coalition on HIV/AIDS, Inc. (APICHA) Chinese American Planning Council, HIV/AIDS Services (CPC)Interviewers and Interpreters Kitseng Chao Wei Chen Shefali Rowshan, MSC Noreen Daniel Mariko Hashimoto, MSW Michie SatoSpecial thanks to: George Ayala, PsyD (GMHC) Bijeng Chen (APICHA) Sumon Chin (Chinese American Planning Council, HIV/AIDS Services) Mandy Choy (Chinese American Planning Council, HIV/AIDS Services) Ruth Finkelstein, ScD (NYAM) Kevin Huang-Cruz, MS (APICHA) Yumiko Fukuda, MSW (APICHA) Laura Horwitz, MSoCSc (GMHC)

Research Team/ContributorsResearch Team/Contributors

Kazuko Ko (APICHA) Gaetana Manuele, CSW (GMHC) Julia Maslak (NYSDOH) Grace Moon, MHA (NYCDOHMH) Jan Carl Park, MA (NYCDOHMH) Ellen Weiss Wiewel, MHS (NYCDOHMH) Shu-Hui Wu (APICHA)

Genevieve Aidala (data entry) Chieh-I Chen (translation and transcription) Le Li (translation and transcription) Samantha Mang (translation and transcription) The Last Word (transcription)

We would especially like to thank all of the study participants, who so generously shared their time and their stories.

Background on API PopulationBackground on API Population

In the US, the Asian & Pacific Islander (API) population continues to increase rapidly.

The API population in NYC grew by 71% between 1990 and 2000.

78% of the API population in NYC is foreign born.

APIs and HIV in the USAPIs and HIV in the US While HIV/AIDS prevalence among APIs in the US

remains relatively low, there are signs of rapid increase.

Between 2001 and 2004, APIs had the only statistically significant estimated annual percentage increases in HIV/AIDS diagnosis rates in the US.

In the same period, NYCDOH reported that in NYC “the number of new HIV diagnoses each year has declined in all racial/ethnic groups except Asian/Pacific Islander.”

Chin JJ, Leung M, Sheth L, Rodriguez TR. Let's Not Ignore a Growing HIV Problem for Asians and Pacific Islanders in the U.S. (2007). Journal of Urban Health. 84(5):642-7.

MethodsMethods

Qualitative in-depth interviews– 35 interviews– Digitally recorded, translated,

transcribedQuantitative survey

– In partnership with Columbia/CHAIN– 89 participants

Characteristics of Participants in Qualitative In-Depth Interviews

Variable N % Primary Language Bahasa Indonesia

Makassar Fuzhounese Hokkien Tagalog Cantonese English Mandarin Fukienese Sumatera Japanese Gujarati Korean Bengali Sichuan Cambodian Chinese(unspecified)

1 1 2 1 1 5 6 2 5 1 3 1 1 2 1 1 1

3 3 6 3 3

14 17 6

14 3 9 3 3 6 3 3 3

Overview of FindingsOverview of Findings

Disparities in access to care, barriers to care

Disparities in mental health issuesRoots of problems appear highly

related to the experience of being an immigrant – facing legal, language and cultural barriers

Evidence of Late TestingEvidence of Late Testing

36% of API participants had self-reported major medical problems when first receiving HIV medical care, compared to 21% for the CHAIN cohort (a representative sample of New Yorkers living with HIV/AIDS)

Barriers to CareBarriers to Care

52% of API participants reported at least one logistical barrier to care, compared to 12% for CHAIN participants

31% of API participants reported at least one provider barrier to care, compared to 12% for CHAIN participants

Barriers to CareBarriers to Care

LOGISTICAL BARRIERS:

– More APIs reported language barriers (11%) and cost barriers (34%) compared to CHAIN participants (1% and 4%, respectively).

PROVIDER BARRIERS:

– Most frequently reported provider barrier was that staff were disrespectful or insensitive (14% versus 7% for CHAIN participants)

Language BarriersLanguage Barriers

Language barriers surprisingly low given that more than half of the API participants in the quantitative survey preferred to receive services in languages other than English

May be a result of recruitment at API-focused agency or a result of concentration of language services where APIs tend to go

Language and Cultural BarriersLanguage and Cultural Barriers

Many respondents spoke little or no English.

Even those who spoke English needed help in medical settings.

Comfort of shared culture:– “Yeah it is just because basically everyone’s

Asian, just to, you know, kind of like feel comfortable that they know our culture a little bit more than . . . the same background I guess. . . I’m not sure, but somehow the skin color makes us comfortable I guess.

Shared Language and EthnicityShared Language and Ethnicity

With Case Managers:– Language and bond with case manager– Resources are not “deep” enough for

some languages– Multiple roles of case managers and

interpreters: prevention educator, treatment educator, supportive counselor

Shared Language and EthnicityShared Language and Ethnicity

With Physicians:– Most people want a doctor who speaks

their language:– “Because I am Chinese and do not understand the

language, they ignore me. When an English speaker meets a doctor, they can chat a little bit. But I am ignored. This kind of thing happens.”

– But language is not the key concern for some:

• Doctor at Bellevue• Older and more experienced physician

Shared Language and EthnicityShared Language and Ethnicity

For some, “Asian” was equated with:– Lack of gay sensitivity– Discriminatory attitudes about HIV-

positive people– Lack of HIV expertise

Shared Language and EthnicityShared Language and Ethnicity

“The science language is English…It’s all this research, everything’s coming out in English. Not anything is coming out of the [other] languages.”

Asked about use of alternative therapies:

“I don’t dare to. I believe in American doctors. I don’t believe in any other doctors.”

Adequacy of CareAdequacy of Care

Only 35% of API participants had medical care that meets “preferred practice guidelines,” compared to 74% for CHAIN participants

Providers and undocumented participants complained that ADAP was insufficient to cover general non-HIV medical care

Consistent complaints about lack of access to dental services

Staying in careStaying in care

Impersonal doctorsWork schedules

– low-wage jobs in restaurants and garment factories

– financial pressures: remittances, smuggling debts

Perception of superior care in US as compared to country of origin

Staying in careStaying in care

“First, here it’s like medications [are offered] for HIV, and you get all the cares that you can, that you needed. Like in the Philippines when you needed something and you don’t have no money, you just die in your bed without having those like . . . medication and anything for infection.”

Support Service Needs and GapsSupport Service Needs and Gaps

87% of API participants exhibited a need for case management services, compared to 40% for CHAIN participants

In qualitative interviews, participants reported service gaps in rental assistance/housing, financial assistance and job training, legal services related to immigration and alternative pain management services (e.g., massage, acupuncture)

Support Service Needs and GapsSupport Service Needs and Gaps

Housing: Of 9 API participants in the quantitative survey showing a need for financial housing services, none of them received such services

HIV knowledge: treatment and HIV knowledge: treatment and preventionpreventionVarying levels of knowledge

– Few had very good grasp– Some knew practically nothing– English fluent seemed more

knowledgeable

Stigma and IsolationStigma and Isolation

Tremendous amount of perceived stigma. Perception that Asians are more un-accepting than other groups.

Some cases show that it is possible to tell friends and family and get support.

Other experiences are very negative.

Stigma and isolationStigma and isolation

Desire not to be a burden on others and make them unhappy:– “Telling one more person just means that one

more person will have a hard time. I want my friends to be happy. I want everybody to be happy, so I don’t tell them.”

– “I still feel I’m so stupid you know . . . . feel so sorry for my parents. . . . that’s the only way I know that you can be bad to your parents; you know, you cannot pass away before your parents.”

Stigma and isolationStigma and isolation

Fear of rejection and discrimination because seen as someone who has done “bad” or “lewd” things.

Fear of rejection because of others’ fear of transmission.

• “I hear people making jokes; for example, ‘don’t drink my water if you have AIDS, I’ll get it too!’”

• Indian grandmother whose daughters asked her not to bathe her grandchildren.

Stigma and IsolationStigma and Isolation

Many people stopped socializing or going to their churches and temples.

Some respondents had told no one about their HIV status except their case manager and physician.

Mental healthMental health

Because of isolation, many respondents spoke of being sad, lonely or anxious.

71% of APIs had low or very low mental health scores, compared to 50% for CHAIN participants.

Yet, most were reluctant to seek mental health services.

Respondents generally did not believe that mental health services could help them.

Those interested in trying them out had very high, unrealistic expectations.

Mental healthMental health Respondents were more likely to talk about

other things that made them feel better:– Listen to music by myself and cry– Spend time with friends– One-night stands, going to clubs– Yoga, meditation, aromatherapy– Staying hopeful for a cure

Many respondents spoke of having a religious practice or going to a religious institution.

Special Needs of UndocumentedSpecial Needs of Undocumented

Limited eligibility for public benefits

Separation from family

– “ . . . I was thinking maybe I should go home, but if I go home, I was thinking . . . I could not get medication or whatever. If I stay here, I at least have that, yeah. . . . I just, I really miss my family. I really, really miss my family.”

Limited work options and financial pressures

RecommendationsRecommendations

Evidence of late entry into care:

– CLOSE THE GAP BETWEEN HIV INFECTION AND HIV TESTING AND REDUCE MISDIAGNOSIS BY TRAINING API DOCTORS WHO ARE NOT HIV SPECIALISTS TO RECOGNIZE AND SCREEN FOR HIV.

RecommendationsRecommendations

Evidence of late entry into care:

– CONTINUE TO SUPPORT SEAMLESS REFERRAL FROM HIV DIAGNOSIS INTO HIV MEDICAL CARE.

RecommendationRecommendation Importance of culturally competent case

managers (more so than physicians) in multiple roles:

– PROVIDE TRAINING TO CASE MANAGERS AND ESCORTS/INTERPRETERS TO HANDLE MULTIPLE ROLES, INCLUDING HIV PREVENTION EDUCATOR, TREATMENT COUNSELOR AND SUPPORTIVE COUNSELOR.

RecommendationsRecommendations

High levels of logistical and provider barriers reported; comfort of shared culture and language:

– SUSTAIN AND IMPROVE CULTURAL SENSITIVITY AND LINGUISTIC APPROPRIATENESS OF SERVICES.

RecommendationsRecommendations

ADDRESS UNMET NEEDS, ESPECIALLY FOR UNDOCUMENTED APIs, IN THE FOLLOWING AREAS:

– Medical coverage for undocumented APIs.– Dental services, especially for undocumented APIs.– Rental assistance/housing, especially for

undocumented APIs who are not eligible for HASA assistance.

– Financial assistance and job training.– Legal assistance with immigration issues (e.g., applying

for a green card).– Alternative pain management, such as massage and

acupuncture.

RecommendationsRecommendations

Low levels of HIV knowledge:

– DEVELOP NEW VENUES FOR PROVIDING PREVENTION EDUCATION TO NEW IMMIGRANTS

• Immigrant community organizations• Work places

RecommendationsRecommendations

Disparities in mental health:

– IMPROVE ACCESS TO MENTAL HEALTH SERVICES FOR APIs

RecommendationsRecommendations

High levels of stigma and isolation:

– DEVELOP CLIENT “EMPOWERMENT” WORKSHOPS AND TRAININGS TARGETED SPECIFICALLY TO APIs.

RecommendationsRecommendations

High levels of stigma and isolation:

– SUPPORT MEDIA ADVERTISING IN API LANGUAGES TO ENCOURAGE EARLY TESTING AND REDUCE HIV STIGMA.

RecommendationsRecommendations

Legal challenges of being an immigrant at root of many problems reported:

– ADVOCATE FOR EXPANDING OPTIONS FOR LEGALIZING IMMIGRATION STATUS ON A HUMANITARIAN BASIS THROUGH CHANGES IN POLICY AND PROCEDURE AT THE FEDERAL LEVEL.