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Spring 2000 Update

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HIV Community Planning Group
Medical Care Development, Inc.
11 Parkwood Drive
Augusta, Maine 04330
Tel: (207) 622-7566, ext. 233
TTY: (207) 622-1209
Fax: (207) 622-3616
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ME HIV CPG  - Community Plan

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Appendix 3 - Summary of the CPG Needs Assessment

Summary of the CPG  
Needs Assessment:

The HIV Prevention Needs
 
of Priority Populations

Spring 1999

Table of Contents

1.         Introduction............................................................................................................1

2.         Focus Groups.........................................................................................................1

3.         Written Surveys......................................................................................................2

            3.1    Provider Surveys...........................................................................................2

            3.2    Consumer Surveys..........................................................................................2

4.         Results Summarized by Population.......................................................................3

            4.1    Other Populations with Special Needs........................................................3

            4.2    Injection Drug Users......................................................................................4

            4.3    Women at Risk................................................................................................4

            4.4    People of Color...............................................................................................5

            4.5    Men Who Have Sex with Men....................................................................6

            4.6    Youth at Risk..................................................................................................7

Appendix 1.    Comparison by Population of Selected .................................................9
                         Questions from the Consumer Survey

1. Introduction

During 1998, the Maine HIV Prevention Community Planning Group conducted a statewide needs assessment to determine the HIV prevention and service needs of people at risk for, or living with, HIV.  The needs assessment used two primary methods to gather information:  1) focus group discussions with people at risk; and 2) written surveys distributed both to health care providers and also to people at risk for HIV or living with HIV.

This summary is being provided to CPG members to help us understand and use needs assessment information to prioritize needs and choose interventions.  For this reason, we have tried to give brief, concise summaries, with information grouped by population.  The information provided here pertains specifically to HIV prevention needs.  Therefore, much of the data gathered about health care needs and services is not discussed in this summary.

It is important to use caution when interpreting this data.  Because a relatively small group of people was sampled, information presented by the Needs Assessment does not represent the overall views of the CPG Populations.  For example, even though some MSM in a focus group may think that television is the best way to present HIV education, not all MSM in Maine believe this is true. 

It is not necessary or appropriate to include every piece of information presented by the Needs Assessment in our Population Needs and Interventions.  Information from this summary should be used to supplement knowledge we already have about our Populations, and can help inform our choices about Population needs and interventions.

More detailed versions of both the focus groups and the survey are available if you'd like them.  Ask Linda Pfaffinger or Mark Griswold for copies.

2. Focus Groups

Focus groups are a way to gather information about a certain topic from a specific population or group of people.  To conduct a focus group, people belonging to a specific population are invited to spend time together and discuss (or "focus" on ) a group of questions.  The questions used for CPG Needs Assessment focus groups all pertained to where people got information about HIV, how effective prevention messages are, where money should be spent on HIV prevention, and treatment and care needs for people living with HIV.

Focus groups were conducted at different locations around the state, with the responses of participants tape recorded and then transcribed into written text.  The main points of each focus group were then summarized.  The different populations who participated in focus groups were:  people living with HIV; men who have sex with men; youth who are homeless; women at risk; people with developmental disabilities; people who use/have used injection drugs; people of color; and people who are incarcerated.

3. Written Surveys

Along with the focus groups, a "Consumer" Survey and a "Provider" Survey were used to help learn about HIV-related needs.  Both kinds of surveys were distributed at health care organizations.  People were given surveys and filled them out themselves before returning them.  The Consumer Survey was specifically for people living with HIV or at risk for HIV infection and the Provider Survey was for people working in health care organizations.

3.1            Provider Survey

The Provider Survey, distributed to health care providers, asked questions about the types of clients they serve, the kind of services they provide,  how effective they were at reaching different populations, and staff training needs.  The survey was distributed to both administrators and staff working directly with clients.  Staff working directly with clients received a slightly longer version of the questionnaire, which asked more specific questions about their clients.  Fifty-nine administrators and 74 direct care staff completed surveys.  

Because data from this survey focuses mostly on services and not on HIV prevention, information from this survey will not be presented here in this summary.  Results will be available later in 1999.

3.2            Consumer Survey

The Consumer Survey, distributed to people at risk or infected with HIV,  asked questions about the source and effectiveness of HIV prevention messages, general health services, HIV care services, sexual behaviors and injection drug use.  People were also asked questions about their age, gender, income and education.

Of this group of surveys, 191 were completed and returned.  Based upon who returned surveys, they were divided into the following population groups:  men who have sex with men, women at risk, people of color, and youth at risk.  Some people fall into more than one category.  For example, a youth at risk may have also been categorized as MSM.  Also, it is important to note that there are fewer populations represented here than are represented by focus groups--we didn't have enough responses to group surveys for injection drug users or for "other populations with special needs."   We hope that the focus groups will provide insight into the needs of these two populations.

4. Results Summarized by Population

Below are the results of the needs assessment summarized by CPG Population.  Results for both focus groups and consumer surveys (if available) are summarized.

4.1       Other Populations with Special Needs

The information summarized below comes from six focus groups.  Three were conducted with people with developmental disabilities, two were conducted with incarcerated people and one was conducted with people with mental illness.  Summaries are grouped together by sub-population.

Focus Group--Incarcerated people

·        It is important to provide information about transmission, prevention, and how alcohol and drug use affects HIV transmission.  It is also important to provide information about condom use and condom accessibility.  Prevention should address the fact that HIV isn't just a gay disease.

·        Incarcerated people said they learned about HIV from TV and other mass media, as well as from sources like peers, rehab and family members.

·        The best sources of HIV-related information are schools, mass media, prison-based education, and home-based education.

·        Written pamphlets are a waste of time.

·        HIV prevention efforts change behaviors sometimes, but not often.

·        Barriers to testing include fear about learning results, cost, and lack of confidentiality.

Focus Group--People with Mental Illness

·        It is important to know about How HIV is transmitted, and to know the HIV status of one's partners.

·        Mass media is an important source of HIV-related info.  Nurses and doctors are not good sources of HIV info since they don't spend the time they need to with patients.

·        HIV prevention efforts should do a better job reaching teens and should educate sex workers.  State government should punish people who transmit HIV to others.

·        Barriers to testing include fear about learning results and lack of anonymity; clinics are too busy and sometimes discourage testing.

Focus Group--People with Developmental Disabilities

·        People with developmental disabilities expressed the need for basic information about HIV transmission and prevention.

·        The best source of HIV-related information included medical care providers and peers.  Some mistrust was expressed concerning info coming from the government.  Some stated they felt that radio and TV are not good sources of information.

·        Prevention efforts are not very effective at changing risk behavior.

·        Barriers to testing:  fear about outcome, don't know where to go, don't want to be tested at the doctor's office.

4.2            Injection Drug Users

Information was provided through two focus groups:  one with six women who use or have used, another of people currently on methadone maintenance.

·        It is important to educate injection drug users about the need to use clean needles.  Barriers to clean needle use include the fear of other people learning about an individual's drug use and fear of getting in trouble.  This makes it difficult for people to access needle exchange programs.

·        Methadone programs need to be more accessible and it would be a good idea to offer HIV-related education at methadone clinics.

·        There was a general acknowledgment that many users were not using clean works.

·        People don't generally seek out HIV education--educators have to reach people with the information.

·        Early school based education about HIV is important, as is peer education and education provided by people who are HIV+.

·        HIV prevention education efforts are not always effective.

·        Barriers to testing:  fear of result, denial of personal risk, not caring about HIV (especially while using).

4.3            Women at Risk

Summarized here is information from one focus group of 11 women in recovery from drug or alcohol addiction as well as the written survey responses of 90 women at risk.

Focus Groups

·        Prevention messages should focus on condom use, eroticizing safer sex and how drug and alcohol use can affect HIV prevention choices.

·        Denial of personal risk is an important barrier to HIV prevention.  Other barriers include low self-esteem and abusive partners.

·        Peers are important for educating about HIV.  Other sources of HIV-related information include:  school, doctors' offices, mass media, planned parenthood, hearing about HIV from famous people.  Girls and boys should be separated in schools during sex education to promote more discussion.

·        Women cited fear, denial and ambivalence as reasons why people don't get tested.

Written Surveys

·        People who filled out surveys were asked to rate six different sources of prevention information as "extremely effective," "very effective," "somewhat effective," "not at all effective," or "not applicable."  Women who responded to the survey rated sources of prevention information in the following order:

  • doctors and nurses (49% said somewhat effective or very effective)

  • social service organizations (45% very or somewhat effective)

  • media (37% very or somewhat effective)

  • school programs (34% very or somewhat effective)

  • friends (30% very or somewhat effective)

  • family (27% very or somewhat effective)

 

  • Thirty percent of women think that most or all people get the HIV prevention information they need.

  • Ninety percent of women know most of the ways people get HIV.

  • Ninety percent of women could tell their friends how to avoid HIV transmission.

  • Sixty-three percent of women rarely or never use a condom or barrier.

  • Thirty-two percent of women had had an STD in the past, and 14% thought there was a good chance that they'd get an STD in the coming year.

  • Nine percent of women believe that there is "some" or "a lot" or risk of becoming infected during the coming year.

4.4            People of Color

Summarized below is information from three focus groups, one of people of African-American descent, one of Hispanic women and one of Hispanic men.  Focus groups for Hispanic men and women were summarized together; the African-American focus group was summarized separately.  Also, 17 people of color responded to written surveys; their responses are summarized below.

Focus Group:  People of African American Descent

  • Mass media, brochures and medical professionals are good sources of HIV-related information

  •  Racial discrimination can affect the quality of HIV prevention education and information.

  • Poverty is an important issue for people of color--perhaps more important than HIV prevention.

Focus Groups:  Hispanic Men and Women

  • It is important to discuss condom use and safer sex negotiation.

  • Some focus group participants lacked basic HIV transmission information.

  • Four out of five men in a focus group reported knowing a person with HIV.  Knowing someone with HIV was cited as a good way to learn about the disease.

  • Women cite their husbands' infidelity as a barrier to HIV prevention, and expressed helplessness in changing men's behaviors.

  • Men didn't perceive themselves as being at risk, and stated that they would not need to seek out HIV-related resources.

  • Men felt that prevention info was available in Spanish in Maine.

  • Women stated that in their culture, people are shy about seeking care, and will often wait until after they are ill before seeing a doctor.  Preventive medical exams are sources of embarrassment.

  • Television is a better source of information than newspapers for learning about HIV since it is less formal and does not have to be read.

  • Men stated that confidential phone numbers might be effective for getting questions about prevention answered.

  • Women stated that they would prefer if men were not present during HIV prevention educational seminars, since it embarrasses women.

  • It is not likely that educational campaigns have changed risky behaviors.

  • Fear and embarrassment prevent people from getting tested for HIV.

Written Surveys

·        People who filled out surveys were asked to rate six different sources of prevention information as "extremely effective," "very effective," "somewhat effective," "not at all effective," or "not applicable."  People of color who responded to the survey rated sources of prevention information in the following order:

-     social service organizations (50% said somewhat effective or very effective)

-     friends (47% very or somewhat effective)

-     media (38% very or somewhat effective)

-     family (35% very or somewhat effective)

-      doctors and nurses (35% very or somewhat effective)

-     school programs (18% very or somewhat effective)

·        Twenty-nine percent of POC think that most or all people get the HIV prevention information they need.

·        Ninety-four percent of POC know most of the ways people get HIV.

·        Seventy-seven percent of POC could tell their friends how to avoid HIV transmission.

·        Fifty-three percent of POC rarely or never use a condom or barrier.

·        Twenty-five percent of POC had had an STD in the past, and six percent thought there was a good chance that they'd get an STD in the coming year.

·        Six percent of POC believe that there is "some" or "a lot" or risk of becoming infected during the coming year.

4.5       Men Who Have Sex with Men

Two focus groups were completed for MSM; one with four men who were living with HIV and another with nine MSM participants.  Survey responses from 78 men are also summarized.

Focus Groups

·        Personal risk awareness is critical in HIV prevention.  There may be less personal risk awareness in a rural state like Maine.

·        Misperceptions exist about routes of transmission and transmission risk for certain behaviors.

·        Negotiation skills are important

·        Some group participants stated that, in the past, they falsely believed that only "dirty, nasty" people could have HIV.

·        Mass media, schools and workplaces were mentioned as important places for HIV education.

·        Many men felt that people were generally afraid to ask their physicians about HIV. 
Some felt that physicians were ignorant about HIV prevention.

·        Peer education from HIV+ people is important.

·        People avoid testing because of shame, embarrassment and fear.  Fears include fear of being shunned in the gay community, fear of death, fear of disease.

Written Surveys

·        People who filled out surveys were asked to rate six different sources of prevention information as "extremely effective," "very effective," "somewhat effective," "not at all effective," or "not applicable."  MSM who responded to the survey rated sources of prevention information in the following order:

-     social service organizations (52% said somewhat effective or very effective)

-     friends (44% very or somewhat effective)

-     media (39% very or somewhat effective)

-      doctors and nurses (33% very or somewhat effective)

-     school programs (20% very or somewhat effective)

-     family (15% very or somewhat effective)

·        Thirty percent of MSM think that most or all people get the HIV prevention information they need.

·        Ninety-six percent of MSM know most of the ways people get HIV.

·        Ninety-four percent of MSM could tell their friends how to avoid HIV transmission.

·        Forty-seven percent of MSM rarely or never use a condom or barrier.

·        Thirty-seven percent of MSM had had an STD in the past, and 25% thought there was a good chance that they'd get an STD in the coming year.

·        Fourteen percent of MSM believe that there is "some" or "a lot" or risk of becoming infected during the coming year.

4.6       Youth at Risk

Youth at Risk needs were assessed through the use of one focus group of youth who are homeless or who have had a history of homelessness, along with the survey responses of 56 youth under the age of 25.  The focus group data and survey responses are summarized below.

Focus Group

·        Knowing about correct condom use and other birth control methods are important for preventing HIV transmission.

·        Educators living with HIV made group participants think more about HIV prevention.

·        Youth received information about HIV at school.  They never received prevention information at doctor’s offices.

·        It is difficult to make other youth understand that they are at risk for HIV.  Early education is important, as well as seeing someone who is infected with HIV.

·        Behavior change is difficult, even with good information.  Role playing can help.  It is also helpful to have condoms with you and to know your partner in advance.  Condom availability and access to condoms are very important.

·        Since many youth live in places where sex is not permitted, unplanned sex is more likely to occur.  This makes easy access to condoms even more important.

·        “Talking helps more than preaching” when educating youth.

·        Depictions of safer sex in mainstream media, like movies and comedies, could help educate youth.

·        Apart from HIV prevention, unintended pregnancy is also an important issue for youth.

·        People don’t get tested because they are afraid of the result, of how they got the virus, of how many people they may have infected, of how to tell family members, etc.

Written Surveys

·        People who filled out surveys were asked to rate six different sources of prevention information as "extremely effective," "very effective," "somewhat effective," "not at all effective," or "not applicable."  Youth who responded to the survey rated sources of prevention information in the following order:

-     doctors and nurses (49% said somewhat effective or very effective)

-     social service organizations (39% very or somewhat effective)

-     school programs (37% very or somewhat effective)

-     friends (36% very or somewhat effective)

-     family (33% very or somewhat effective)

-     media (32% very or somewhat effective)

  • Thirty-two percent of youth think that most or all people get the HIV prevention information they need.

  • Ninety-three percent of youth know most of the ways people get HIV.

  • Eighty-six percent of youth could tell their friends how to avoid HIV transmission.]

  •  Fifty-six percent of youth rarely or never use a condom or barrier.

  • Fifteen percent of youth had had an STD in the past, and 21% thought there was a good chance that they'd get an STD in the coming year. 

  • Sixteen percent of youth believe that there is "some" or "a lot" or risk of becoming infected during the coming year.

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