People diagnosed with HIV who have never accessed medical care are often dissatisfied with post-test counselling

Roger Pebody
Published: 29 June 2011

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 care.

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 months beforehand.

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 than once.

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 failed.

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.


Garland PM et al. HIV Counseling, Testing and Referral Experiences of Persons Diagnosed with HIV Who Have Never Entered HIV Medical Care. AIDS Education and Prevention 23: 117–127, 2011. (Full text freely available online).

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