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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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