A qualitative study conducted with people who have tested
HIV-positive but never had HIV medical care in the United States has found that many of these
individuals had poor experiences with testing, counselling and referral
services. Health professionals were not always perceived to be compassionate,
helpful or available, researchers from the Centers for Disease Prevention and
Control (CDC) report in the June issue of AIDS Education and Prevention.
Most of the participants were poor and often had no health
insurance. Interviewees felt that the structural barriers to accessing
healthcare were considerable.
Failure to link people who have tested HIV positive with specialist
care after diagnosis is a concern in many countries, but a particular issue in
the United States. Around 25% of newly-diagnosed individuals are
not successfully linked to HIV care within six to twelve months of their
diagnosis, and between 10%-20% of patients remained unengaged in care three to
five years later.
While some studies have looked at retention in care, very
little research has investigated the factors associated with never accessing medical
One study from New
York found that people who never entered care or were
slow to do so found that they were more likely to be of non-white ethnicity and
to have been diagnosed at a community testing site.
The qualitative study described here is part of a larger CDC
project, the Never in Care Pilot Project, of which the quantitative findings
are yet to be released. Researchers attempted to make contact with individuals
who had previously tested positive for HIV but who had not entered HIV medical
care in Indiana, Philadelphia
and Washington State.
They conducted semi-structured interviews of approximately
30 minutes each with 42 people. Most participants (79%) had been diagnosed
between five and ten months previously, with the remainder diagnosed up to 19
Two-thirds of participants were African American; 45% were
under the age of 30; 71% were male. Annual income tended to be low - 50% earned
less than $15,000, while only 10% earned more than $40,000.
One limitation of this part of the study is that there is no
comparison group - people who didn’t access care are not compared with
individuals who did. It is possible that many other people had poor experiences with counselling and referral, but accessed services nonetheless.
A common theme of the interviews was that little counselling
was provided or that it was of poor quality. One man said:
“I basically I had to
counsel myself and thank God that I have friends, and a brother and like family
that was there for me.”
Another felt the counsellor lacked compassion.
“She didn’t take in
consideration about how I was feeling . . . Like if you in that job, just be
caring. Just . . . be considerate . . . Now I would never go back to [medical
facility] and, to get those treatments. No. Never ever.”
Others felt that they had been given incorrect or incomplete
information, leading them to lose trust.
Those who were dissatisfied with the counselling were more
likely to have been tested at a sexually transmitted diseases clinic, inpatient
facility, private doctor’s office or infectious disease clinic. (Those who were
satisfied were more likely to have tested at an antenatal clinic, drug clinic
or specialist HIV testing site).
More than half the respondents described receiving ‘passive
referrals’: they were given a brochure or business card of follow-up services,
or verbally told where to go. However the CDC, the American public health
agency, recommends that newly diagnosed people are given an ‘active referral’:
staff make an appointment for the person tested, or physically accompany him or
her to the service.
Respondents perceived passive referrals to be of little or
no help; they often felt that the gravity of their diagnosis warranted more
active assistance. Often the written materials were not valued or were ignored.
“I got a little
envelope, manila folder, with information in it. It was more information on
HIV, general information, like, what it is, and stuff like that… But where that
is right now, is, I have no clue.”
Other respondents were promised a follow-up phone call or
letter that never came, or received no referral at all.
Most people who spoke about their experiences with HIV
follow-up services highlighted gaps in or limitations with the services that
affected their motivation or ability to access them. Many had difficulties
getting hold of their assigned case manager or were disappointed with the case
management system (social work services which aim to help people navigate the system
of health care and social services, get access to care and co-ordinate services).
“I just got lost in
the whole shuffle of things… I’d call and a lot of times nobody would even
answer the phone and I know their opening hours, so I don’t know why they
wouldn’t answer the phone. Um… they just gave up and I gave up… I would say
they gave up first.”
Few individuals in the study had seen a case manager more
A large number of respondents said they hadn’t contacted
services because they were poor and had no health insurance. A number of
respondents seemed unaware that case management may have been able to help them
get free or subsidised medical care. They did not know that they may be
entitled to assistance through programmes such as Medicaid, Medicare, the AIDS
Drug Assistance Program (ADAP) or the Ryan White Program.
Some who did attempt to enter such programmes found the
process time consuming and difficult.
“And she [case
manager] said that I needed a Medicare form to get a denial because usually
they deny you. She said if they don’t deny you it’s great, but if they do . . .
she needs that form so that she can sign me up for another health insurance
maybe. But she said that one’s on the waiting list. So. She it’d probably be
about another eight months before I even got medical insurance or… in to see my
doctor, or a doctor.”
But other respondents had not accessed care because they needed
more time to come to terms with their diagnosis, were concerned about privacy
or disclosure, or generally lacked motivation.
“I’m my own worst
enemy. She did everything in her power to help me. I did this. You know. I made
the mistake of not following up.”
The authors say that these interviews with people who have
not accessed care provide “a window into their perceptions of the counselling,
testing and referral encounter, the existing systems for linkage to care, and
the influence of these on their decision to access care”.
They say that the counselling,
testing and referral encounter may be the only opportunity to
link some individuals to care - and in the cases described here, the process
They recommend more
thorough counselling at the time of diagnosis, clearer guidelines on ‘active
referral’ and more seamless integration of testing facilities and linkage-to-care services.