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Tools for Grantees: Outreach: Engaging People In HIV Care

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3. Reasons People Are Not In Care
    Outreach Studies
    The In-Care: Needs Higher Than in the Past

3. Reasons People Are Not In Care

Outreach Studies  TOP

Outreach programs are reportedly better at reaching those who fell out of care and sporadic users of care. Less successful are efforts to reach those who know their HIV status and link them to care for the first time. These findings come from two main outreach studies, summarized below.  This suggests that outreach is reaching the easiest to reach, although their needs are by no means easy to address. (An alternative indication may be that outreach work is taking place in familiar locations that no longer are the place to find populations not in care.)

The first data source is from 17 HRSA/HAB SPNS outreach projects set up specifically to reach the out-of-care.  By some measures, clients enrolled in SPNS projects are underserved in terms of poverty and lack of insurance, but only 12 percent of a 700 person sample reported receiving no HIV care in the six months prior to study enrollment.  Most (85 percent) had a regular HIV provider; 79 percent had over two primary care visits within the last six months.  Many have also known of their HIV status for some time: 68 percent were tested for HIV five or more years earlier. 

The second data source is a HRSA/CDC project called INSPIRE (Intervention for Seropositive Injectors Research and Evaluation) (1999-2004).  This four-city study examined the efficacy of a behavioral intervention to increase utilization of HIV medical care, increase adherence to HIV medications, reduce injection drug use risk behavior, and reduce sexual risk behavior. There was mixed success in recruiting the out-of-care.  Clients reported high levels of having recently received care: 79 percent had an HIV primary care visit within the last six months and 39 percent had 6+ visits over the last six months.  There may be some data bias, given that some programs, such as in New York City, were doing recruitment in methadone and HIV clinics where clients would be more likely to be in some type of care.

The many reasons people may not be accessing care constitute the same series of obstacles that confront overall access to care: competing survival needs, insufficient services, and fear, to name a few.  Data are limited, however, to define the specific reasons—the precise mix—that keeps people out-of-care altogether.  Most certainly, many factors are at work. 

To explore the reasons people are out-of-care, a SPNS outreach sub-study and the above ARTAS study found these factors at work:

  • Lack of Insurance.  The SPNS sub-study found that those not in care lacked health insurance (32 percent) more often than those in care (16 percent). 

  • Substance Abuse and Mental Health Needs. SPNS subjects who were out of care reported more unmet need for substance abuse treatment in the prior six months.  Additionally, 57 percent of those not in care reported having an unmet need for mental health care as compared to 34 percent for those in care. The out of care also report higher levels of unprotected sex over the past six months than those in care—an indicator of HIV transmission among the hardest-to-reach.   The CDC ARTAS study also found that drug abuse was a major barrier to entering care in the first year after learning one’s HIV status.  Only 36 percent of those with a recent history of crack use or injection drug use entered care versus 63 percent for those without such a history.

  • Health Literacy.   The CDC ARTAS study found that approximately 40 percent reported “lack of knowledge” about health issues as a barrier to accessing services, although this figure declined significantly with the provision of case management support. (The Institute of Medicine has also found health literacy to be a barrier to getting HIV care.)

  • Readiness.  Unconfirmed reports from outreach programs suggest that once individuals are ready to engage in care, retention is more likely as compared to those who are not ready.

  • Health Status and Perceptions.  Care-seeking behavior may be tied to health status.  The CDC ARTAS study determined that those not feeling well were far more likely to seek care: 63 percent who did not feel well sought care while only 39 percent of those who felt well were care-seeking.  In the SPNS sub-study, significant numbers of clients who are not in care report, for example, that they do not feel sick enough to go to the doctor every six months (37 percent) or believe faith and spiritual beliefs will help HIV (48 percent). 

  • Fear and Stigma.  Roughly 40 percent of those newly testing positive in ARTAS reported “fear” as a barrier to getting in care—a figure reduced by nearly half with ARTAS’ case management intervention.  But fear, as with other factors, may not always be central to care avoidance, as evidenced by a finding in the SPNS sub-study that only 18 percent reported being worried that a family member or partner would be angry if the individual went for care.

Given the difficulties of finding the out-of-care, the question arises: should efforts focus more on sporadic users of care, those already somewhat within the system, as part of a more immediate ethical obligation of care providers to treat current clients?  This question is particularly compelling when examining the impact of sporadic use of care on health outcomes. The Johns Hopkins AIDS Service Database, 1999-2004 examined utilization of care among 1,500 HIV-positive individuals who had enrolled in care to examine the critical question: how well are individuals engaged in care?  The study compared those who missed fewer than 25 percent of their medical appointments versus those who missed over 25 percent of visits.  (The study also examined the influence of ancillary services on appointment keeping.)  Those missing 25 percent or more of their appointments did, somewhat unsurprisingly, worse in care.  They were: less likely to be using ART (64 percent compared to 78 percent for those who missed fewer appointments); less likely to have viral loads suppressed below 400 RNA copies (31 percent compared to 65 percent); more likely to experience poorer CD4 test outcomes (declines of minus 36 cells/mm3 versus a 68+ gain for the comparison group).

Sporadic care is associated with many causes.  Life events, like loss of welfare benefits or housing, or having one’s kids removed from school, are just a few. Other factors leading to sporadic use of care include cycling in and out of the corrections system and interruptions caused by critical life events such as domestic abuse or even giving birth.

The In-Care: Needs Higher Than In The Past  TOP

It is likely that PLWH have a broader range of needs than in years past, if comparing PLWH populations from different time periods in terms of their demographics, socio-economics, substance abuse and mental health needs, and lack of health insurance.  Compare two HIV populations from different time periods.  HCSUS, the Health Care Services Utilization Study, a large national study on receipt of health care by PLWH, includes clients in care from 1996-1998.  SPNS covers 2001-2003. 

By most measures, SPNS outreach programs, the newer group, reach enrollees who are less educated, have lower incomes, are more likely to be homeless, and have higher rates of such co-morbidities as substance abuse and mental health histories.  All would seem to be measures more likely to be associated with not being in care.  The same disabling characteristics are evident when making a more narrow, and parallel, point of comparison: HCSUS clients with a “usual source of care” (USOC) versus SPNS clients with a USOC.  Again, SPNS USOC clients have much higher needs.  They are more likely to be Black (57 percent versus 31 percent for HCSUS), to not have a high school diploma (44 percent versus 24 percent), to lack insurance (39 percent versus 13 percent), and to report any drug use (81 percent versus 39 percent).  SPNS client clinical characteristics included CD4 status roughly parallel to HCSUS and a higher likelihood of having received mental health services within the last six months (51 percent versus 5 percent) and having a case manager (86 percent versus 24 percent).

 


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