AIDS PATIENT CARE and STDs

Volume 20, Number 3, 2006

© Mary Ann Liebert, Inc.

Role of the HIV/AIDS Case Manager: Analysis of a Case

Management Adherence Training and Coordination
Program in North Carolina

RACHEL C. SHELTON, M.P.H.,1,4 CAROL E. GOLIN, M.D.,1,2

SCOTT R. SMITH, R.Ph., Ph.D.,3 EUGENIA ENG, M.P.H., Dr.P.H.,1
and ANDREW KAPLAN, M.D.2

ABSTRACT

Highly active antiretroviral therapy (HAART) adherence rates of 90%–95% or more are re-
quired to be effective at treating the virus and preventing drug resistance. From both a med-
ical and public health perspective, it is essential that HIV-positive clients strictly adhere to
antiretroviral treatment regimens. One promising approach to promoting optimal adherence
rates among HIV-positive individuals is training and reimbursing case managers to provide
adherence coordination services to HIV-positive clients. In this study, a sample of 16 HIV/
AIDS case managers from agencies across North Carolina participated in a Case Management
Adherence Training and Coordination Program for a 3-month period. After case manager
training, case managers enrolled 1–4 of their existing clients, who met eligibility criteria, to
receive the adherence coordination program. Data were analyzed from focus group interviews
and individual interviews conducted with case manager participants; their respective client
care plans were also analyzed to identify primary barriers and strategies reported by case
managers. Although case managers perceived themselves to be well positioned to provide ad-
herence coordination services for their HIV-positive clients, they also identified barriers that
they face in providing these services, including lack of reimbursement for their time, inade-
quate training, and insufficient knowledge of HIV/AIDS and medications. The findings of
this study suggest that, with appropriate training and reimbursement, HIV/AIDS case man-
agers can play a pivotal role in promoting and improving client adherence to antiretroviral
medications.

INTRODUCTION gests that adherence to prescribed doses as

high as 90%–95% may be required to achieve

A DHERENCE TO HIGHLY active antiretroviral

therapy (HAART) is a critical aspect of ef-
fective treatment of HIV/AIDS. Research sug-
suppression of viral replication and prevent the
development of resistant viral variants.1–7 Yet,
several studies report that adherence rates to

1University of North Carolina at Chapel Hill School of Public Health, Department of Health Behavior and Health

Education, Chapel Hill, North Carolina.

2School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.
3Center for Outcomes and Evidence, Agency for Healthcare Research and Quality
4Present address: Harvard School of Public Health, Department of Society, Human Development and Health, Boston,

Massachusetts.

193
194
HAART regimens are suboptimal, and the ma-
jority of patients with HIV do not meet the high
rates of adherence in daily practice needed to
obtain maximum benefit.4,8–11 The problem of
resistance to HAART is compounded by the
observation that these resistant variants may be
spread from person to person and by the lim-
ited treatment options once resistance has de-
veloped.4,12–15 Therefore, from a public health
perspective, it is critical that strategies be put
in place that promote HAART adherence.1,16,17
The reported determinants of adherence to
HAART are somewhat variable when studied
in different populations. However, adherence
studies have found that psychosocial factors
including substance use,18–21 depression,18,21,22
social stability,23 social support,11,24,25 and un-
stable housing26,27 are related to low rates of
adherence for HAART. Furthermore, most
studies suggest that social service needs, such
as needs for housing, drug abuse counseling,
and incorporating the HAART regimen into
one’s lifestyle, are important factors that
should be considered in the promotion of ad-
herence to HAART.3,28–32 Unfortunately, HIV
infection is now spreading most rapidly among
the population where social service needs are
most prevalent. Considering the geographic
burden of HIV/acquired immune deficiency
syndrome (AIDS) within the United States, the
South has been identified as the geographic
area of the nation with the most people living
with AIDS.33 For North Carolina, in particular,
recent increases in HIV/AIDS prevalence rates
have been alarming. The number of reported
AIDS cases continued to rise from 2001 to 2003,
with 871 in 2001, 1014 in 2002, and 1083 in
2003.33,34 Furthermore, minorities and those
living in poverty, are disproportionately rep-
resented among reported HIV cases in the
state.33
Case managers have historically coordinated
community-based social, mental health and
medical services for vulnerable populations
facing long-term challenges and needing ex-
tended care.35,36 Several studies suggest that
case managers are effective in helping popula-
tions (including substance users and those liv-
ing with chronic and mental illness) navigate
the complex social service system to meet their
psychosocial, medical, and financial needs.36–42
SHELTON ET AL.
Some case managers specifically work with in-
dividuals living with HIV/AIDS. HIV/AIDS
case management services aim to provide HIV-
infected clients with centralized coordination
of resources and referrals for community-based
social services and medical care.43–45 Several
studies have shown that, among people with
HIV, having a case manager is positively asso-
ciated with having one’s needs for services
met,46–49 and that having a case manager in-
creases a client’s utilization of support ser-
vices.50–52 Despite indications that case man-
agers can be effective in helping clients address
the challenges associated with these other con-
ditions, the role of case management in pro-
moting adherence to HAART has not been ex-
amined extensively.26,53,54
To explore the role of case managers in pro-
moting adherence to HAART, we investigated
the experience and perceptions of HIV/AIDS
case managers in North Carolina who partici-
pated in a Case Manager Antiretroviral Ad-
herence Coordination Training (AACT) pro-
gram for 3 months, and were reimbursed for
providing adherence coordination services to
HIV-positive clients. We conducted focus
groups and individual interviews with HIV/
AIDS case managers and reviewed the client
Care Plans they developed to understand: (1)
case managers’ perceived role in adherence
and (2) case manager barriers and strategies to
providing adherence coordination services.
Our goal was to inform the development of in-
terventions and policies in North Carolina to
improve and better support patient adherence
to antiretrovirals.
MATERIALS AND METHODS
Study sample
Identification and recruitment of case managers.
An association of AIDS Service Organizations
serving central North Carolina recruited case
managers to participate in the Case Manager
AACT program. To be eligible for the training,
participants had to have at least 3 years of HIV
case management and at least a bachelor’s de-
gree in a human service field.
Case managers were recruited from agencies
that were certified to provide HIV case man-
ROLE OF THE HIV/AIDS CASE MANAGER
agement throughout North Carolina. The as-
sociation of AIDS service organizations serving
central North Carolina initially contacted
prospective case manager subjects through
marketing materials for the “Case Manager An-
tiretroviral Adherence Coordination Training”
that were mailed to HIV case management
agencies. The training was also advertised in
the AIDS Service Organization’s statewide
newsletter. Twenty-three case managers iden-
tified themselves as meeting the eligibility re-
quirements listed in the marketed materials
and mailed in registration forms to the AIDS
Service Organization to confirm their eligibil-
ity. Sixteen case managers from 12 different
agencies across North Carolina attended the
training.
Identification and recruitment of HIV-infected
clients. Participating case managers were in-
structed to select up to four HIV-infected adult
clients, who were in their care at the agency
during the three-month AACT program pe-
riod. Case managers were asked to select
clients they believed would most benefit from
adherence coordination and who they deter-
mined were in greatest need of adherence ser-
vices, based on their previous history of
HAART adherence.
Implementation of the North Carolina statewide
Case Manager AACT Program
The North Carolina Statewide Case Man-
agement AACT Program was implemented
by University of North Carolina (UNC) re-
searchers and an association of AIDS Service
Organizations over a period of approximately
3 months. The goals of the program were to
prepare HIV case managers to provide care
planning, information and support to promote
treatment adherence for clients and to examine
the effectiveness of providing adherence coor-
dination training. The program consisted of a
1-day workshop designed to increase case
manager knowledge about: (1) antiretroviral
therapy; (2) the case manager’s role in coordi-
nating services to increase adherence; and (3) a
3-month client Care Plan.
The workshop consisted of a combination of
didactic lectures, video training materials, and
195
hands-on, interactive opportunities to practice
specific skills. The workshop was composed of
the following six sessions: Antiretroviral Ther-
apy Basics; HIV Treatment Adherence Strate-
gies; Side Effects and Interactions of HIV-
Related Medications; Assessment and Care
Planning for Improved Adherence; Adherence
Coordination Toolbox; and Linking Services
and Information. Case managers also received
an adherence tool kit that contained: the Case
Manager Adherence Intervention Care Plan; a
pillbox to distribute to clients (if client was in-
terested); information and resources on treat-
ment adherence tips; and a glossary of terms
for people living with HIV.
To implement the program, case managers
were required to see clients approximately
every 2 weeks and hold five adherence coordi-
nation sessions with each participating HIV-
positive client over the 3-month period of the
program. At each visit, case managers used the
Case Manager Adherence Intervention Care
Plan (provided at the training) to identify and
track adherence barriers and interventions
used to address these barriers and outcomes of
care.
Case managers conducted a Comprehensive
HIV Treatment Adherence Assessment for
each client at the first and last adherence coor-
dination sessions, to inform their Care Plans.
Case managers’ time conducting adherence co-
ordination was compensated by having agen-
cies with participating case managers receive
$300 per client served and up to $150 in travel
assistance to compensate for their case man-
agers’ time.
Evaluation
Pre-program case manager focus groups. On
the morning of the HIV Case Manager AACT,
two simultaneous hour-long focus group in-
terviews with case manager participants were
conducted and audiotaped by trained facilita-
tors, prior to training implementation. One fo-
cus group consisted of 1 male and 5 female case
managers and the other focus group consisted
of 10 female case managers. Participants were
told that the purpose of the study was to gather
information regarding what practices and ap-
proaches are being used in North Carolina to
196 SHELTON ET AL.

TABLE 1. CASE MANAGER FOCUS GROUP GUIDE

Question Probe

1. What do you see as your role in working with
clients who are HIV positive?
2. What are you currently doing with HIV-positive
clients around the issue of adherence to
antiretroviral medications?
3. What strategies have you tried to use to increase
clients’ adherence to antiretroviral medications?
4. Tell us about times when you have worked with
other HIV/AIDS professionals to address your
clients’ adherence.
5. How do you feel in talking with HIV-positive
clients about adherence to medications?
6. What, if anything, has gotten in the way of
addressing adherence when you wanted to?
1. Are there areas that you do not feel are your
responsibility? Tell us more about that.
2. How does discussion with HIV-positive clients
around adherence to medication usually come up?
3. What worked? What didn’t work? Why not?
4. If so, in what ways? What helps? What gets in the
way?
5. What kind of training have you received in the
past that has helped you with providing assistance
to patients around adherence?
6. What changes could be made to assist you with
providing effective adherence counseling?

help HIV-positive patients take their medica-
tion. Facilitators asked case managers the fol-
lowing questions with probes using a stan-
dardized, scripted focus group guide (Table 1).
Postprogram case manager interviews. Two
weeks after program completion, researchers
contacted case managers (who had participated
in the focus group) by telephone to ask seven
semistructured, open-ended follow-up ques-
tions regarding their experiences providing
adherence coordination to HIV-positive clients
and their perceptions of the program. Re-
searchers asked case managers the following
questions (Table 2):
barriers were salient to their client; case man-
agers were trained to use the Care Plan to
screen clients about each barrier. Case man-
agers also indicated the date the barrier(s) were
identified, the intervention(s) they used to ad-
dress the barriers, the date when they reviewed
the barrier(s), whether or not each was re-
solved, and associated outcomes. At program
completion, 9 of 16 case managers returned the
Care Plans for a total of 21 clients. To maintain
the confidentiality of the case managers, the
agencies de-identified the client Care Plans be-
fore sending them to UNC researchers. There-
fore, researchers were unable to link case man-
ager characteristics with specific data.

Case manager adherence intervention Care Plan.

The Care Plans given to case managers at the
training provided a list of 15 potential barriers
that were grouped in the following categories:
medical, knowledge, community resources,
and psychosocial. Using this list for each client
at each visit, case managers indicated which
Data analysis
Quantitative analyses of client Care Plans.
UNC researchers conducted quantitative analy-
ses of client Care Plans through the tallying of
the following data: (1) barriers facing clients (as
identified by case managers); (2) case manager

TABLE 2. CASE MANAGER FOLLOW-UP INTERVIEW QUESTIONS

Questions

1. What skills (that you learned at the training) have been applicable in your work with HIV-positive patients?
2. What skills did you not learn at the training that would be helpful to you in your work?
3. What knowledge did you acquire at the training that has been useful in your work with HIV-positive patients?
4. What knowledge would you still like to have in working with HIV patients around the issue of adherence?
5. What barriers have continued to prevent you from discussing adherence with your patients?
6. If you worked for the state, what recommendations would you make in the development of an adherence
program?
7. Following the training you received on adherence, what kinds of changes have you seen in your patients?
ROLE OF THE HIV/AIDS CASE MANAGER 197

interventions to address client barriers; and (3)
barriers reported by case managers to be re-
solved.
Qualitative analyses of focus groups and inter-
views with case managers. Qualitative analyses
of verbatim transcripts from both focus groups
and individual interviews with case managers
were completed to assess their experiences
with the program and perceived changes in
case manager beliefs, attitudes, practices and
barriers related to adherence counseling. Two
trained research assistants recorded and tran-
scribed focus group transcripts. One research
assistant transcribed the tapes verbatim, and a
second research assistant verified them against
the audiotapes for accuracy. Both research as-
sistants read through each transcript and iden-
tified domains (categories of meaning), which
primarily corresponded with focus group and
interview questions and probes. The two re-
search assistants read the transcripts again to
identify codes (relevant concepts or ideas) un-
der each domain. The two research assistants
met after this initial analysis and agreed on
codes that were identified. A third time ana-
lyzing each transcript, research assistants as-
signed codes to text lines that represented par-
ticular ideas. Then researchers retrieved text
lines (which had been assigned to the same
code) to determine patterns of meaning, or
themes. Research assistants followed this same
protocol for the analysis of case manager in-
terviews.
munity development centers, 1 from a hospital-
based clinic, 2 from home-based case manager
programs, 2 from church-based centers, 2 from
regional medical centers, and 1 from a youth-
focused HIV community agency.
Quantitative results
Table 3 outlines the primary client barriers
to taking ART that case managers identified in
the Care Plans; these data were obtained from
deidentified records of client Care Plans sub-
mitted by case managers. Overall, case man-
agers most frequently cited medical barriers as
being challenges for clients, followed by psy-
chosocial barriers and knowledge-related bar-
riers. The top four barriers faced by clients
were: (1) medication side effects; (2) depres-
sion; (3) anxiety; and (4) lack of knowledge
about medical regimen.
Qualitative analyses
Qualitative analyses conducted of both focus
groups and interview data revealed informa-
tion about case managers’ perceived roles, ex-
periences with the program and perceived
changes in their beliefs, attitudes, practices and
barriers related to adherence counseling. Below
we describe a synthesized summary of these
findings.
Role of case managers in promoting adherence.
In the focus groups, case managers indicated

TABLE 3. BARRIERS FACED BY CLIENTS (n
21 CLIENTS)

RESULTS
Number and % of clients
Barriers facing barriera
Study sample
1. Medication side effects 16/21 (76.2%)
A total of 16 case managers attended the 2. Depression 12/21 (57.1%)
AACT and participated in baseline focus 3. Anxiety 11/21 (52.4%)
groups and follow-up interviews. Ninety-four 4. Lack of knowledge 10/21 (47.6%)
about medical regimen
percent of participating case managers were 5. Lack of knowledge 9/21 (42.9%)
female. Nine case managers returned Case about disease process
Manager Adherence Intervention Care Plans to 6. Literacy/comprehension 9/21 (42.9%)
UNC researchers at the end of the program, for 7. Patient beliefs about 9/21 (42.9%)
knowledge
a total of 21 HIV-positive clients. Case managers 8. Nutrition/lack of food 9/21 (42.9%)
came from a diverse range of agencies through- 9. Substance abuse/alcohol 9/21 (42.9%)
out the state of North Carolina including: 2 from and street drugs
10. Lack of support 9/21 (42.9%)
community health clinics, 4 from community-
based support or learning centers, 2 from com- aAs identified by case manager.
198
that there was a lack of a standard definition
of the role of HIV/AIDS case manager. All par-
ticipants reported that case managers assume
one or two of eight primary roles: (1) “catch-
all”; (2) educator; (3) a regulator (i.e., a “po-
liceman or fireman”); (4) a resource (i.e. “bank
teller”); (5) consultant; (6) a coordinator of ser-
vices; (7) liaison (i.e., between clients and their
families or their doctors); and (8) social sup-
port. Some case managers spoke of an advo-
cacy component of these roles. During inter-
views, the majority of case managers reported
that following their participation in the AACT,
they had incorporated more of a counseling
component into their role as HIV/AIDS case
managers and perceived the development of a
personal element in their work. They indicated
that this shift was appreciated by their clients.
Many case managers emphasized the unique
relationship between case managers and clients
and the ideal position of case managers to pro-
mote adherence. They commented on the inti-
macy of their relationship and the ability of
case managers to see where adherence fits into
the larger context of the client’s life. Case man-
agers also noted the frequency of contact and
regularity of communication that they perceive
themselves to have with clients, both of which
they felt were important factors in the promo-
tion of HAART. According to one participant,
The role of medication adherence is most appro-
priately placed with the case manager. We see them
more than anybody else . . . We either see or talk to
them every day as opposed to going to doctor every
three months. Constant contact is important. We get
to go to their homes, check pillboxes and that sort
of thing. It’s obvious to us the clients who need sup-
port, an extra nudge to take medicines . . . I can’t
imagine it can happen anywhere else.
Other case managers emphasized the im-
portance of the liaison role of the case manager
between the client and their physician, and the
value of the case manager as one important
component of a larger team of providers. Most
case managers felt that “adherence is always
going to be a part of case management” and
that case managers have the potential to play
a valuable role in promoting client adherence.
However, they also emphasized the impor-
tance of properly training case managers to
SHELTON ET AL.
provide adherence coordination services. The
need for training was particularly concerning
to case managers because many are asked by
clients to help with medication adherence, and
the case managers might provide misinforma-
tion without such training. One participant
stated, “Case managers are doing it anyway,
but not a good job of it because they are in-
adequately trained, and they’re not getting
billed,” meaning that case managers are not re-
imbursed for adherence counseling of HIV-in-
fected clients. “They’re doing it in the closet.
But you can’t go to the home without talking
about the medicines.”
Case manager barriers to providing adherence co-
ordination services. A number of themes arose
in focus groups related to case managers’ per-
ceptions of client and case manager barriers to
promoting adherence to HAART. A primary
theme expressed by the majority of case man-
agers was that case managers’ struggle with
establishing boundaries between their profes-
sional and personal relationships with HIV-
positive clients. Case managers felt it was im-
portant to establish boundaries with clients to
encourage clients to take responsibility for their
lives and not be overly dependent on their case
managers. One participant stated,
But in order for us to do our job and be effective at
doing our job, we’ve got to set some boundaries . . .
but it is difficult, it is very difficult, and they’ll tell
you “Well I guess I’ll live on the street,” and then
the human side of you kicks in, and you’re like, I
really don’t want them living on the street, so you
know, maybe I need to find a way to help them.
Similarly, case managers felt it was difficult
to keep clients at a distance due to their per-
ception that some clients are similar to them-
selves; according to one case manager, “ . . . if
you’d have met them in another setting, they
would have become your friend.” Although
they recognized the health benefits of taking
the medications, case managers felt ambivalent
about promoting antiretroviral therapy (ART)
adherence because they also observed the toll
of side effects on clients and drug-associated
toxicities. Some case managers felt that this am-
bivalence served as a barrier to enhancing ART
adherence with HIV-positive patients.
ROLE OF THE HIV/AIDS CASE MANAGER
In the discussion of barriers to ART adher-
ence, some case managers felt that patient fi-
nancial barriers and case managers’ lack of time
to spend with clients also prevented them from
ensuring client success with ART adherence.
Prior to attending the AACT, other organiza-
tional factors that case managers perceived to
be barriers to adherence coordination included
lack of reimbursement for their time, as well as
inadequate training and insufficient knowl-
edge in the areas of adherence coordination
and HIV/AIDS.
It is important to note that case manager and
client barriers to improve ART adherence were
closely related. Case managers perceived chal-
lenges in ensuring client ART adherence be-
cause of the complexity of client-level barriers
including the complexity of medical issues (in-
cluding depression), clients’ struggles to attend
clinic appointments, and the difficulty of ob-
taining accurate information about the health
status of clients. Many of these challenges are
associated with client isolation, referring both
to transportation barriers associated with living
in more isolated rural areas, as well as isolation
from social support options and feelings of
powerlessness. Other client-related barriers that
case managers identified included substance
abuse, literacy, communication difficulties, and
denial about having HIV/AIDS. According to
one case manager, “There’s still that issue of ‘If
I don’t talk about it, it doesn’t exist.’ ”
Case manager strategies for promoting adherence
coordination. A main topic of focus group dis-
cussion was the use of various forms of com-
munication to promote ART adherence and
support HIV-positive clients. Case managers
identified several strategies that they used (be-
fore being trained in adherence coordination).
These included establishing rapport with the
client, being firm about setting limits around
program resource use and letting the client take
responsibility, communicating directly about
adherence, and communicating across case
management agencies.
Case managers also cited using various
forms of emotional and instrumental support
to assist HIV-positive clients including instru-
mental support strategies (i.e., use of mentors
and volunteers), case manager personal coping
199
strategies, and trusting oneself. Case managers
recognized that their job was difficult and emo-
tionally demanding and that it was important
to develop coping strategies to deal with their
own emotional response to case management.
Case managers also acknowledged the impor-
tance of understanding the difficulties and
complexities associated with adherence. Ac-
cording to one case manager,
Taking the meds is not just going to the pharmacy
and popping pills. It’s managing the whole lifestyle.
And the side effects, I wouldn’t wish on my worst
enemy. You know, you’re raising kids, doing
things, and taking the meds and still be the matri-
arch. These people are doing their best.”
After participation in the AACT, most of the
case managers identified additional strategies
that they had implemented in their work with
HIV-positive clients. Most of these strategies
related to the introduction of new reminder
aids (such as pillboxes or alarms); other strate-
gies were associated with new approaches in
collaboration, communication, and education.
Some case managers found it helpful to work
with other health care providers by establish-
ing regular communication with the clients’
other healthcare providers, including physi-
cians, nurses and pharmacists. In terms of com-
munication, case managers perceived the im-
portance of “just being able to approach a client
where they are.” Case manager educational
strategies included learning more about med-
ications, side effects, and the relationship be-
tween adherence and substance abuse, as well
as informing and teaching their clients about
these issues.
Overall, case managers believed they could
play a valuable role in promoting client adher-
ence and overcoming perceived barriers to ad-
herence. However, they felt it was crucial that
case managers involved in adherence coordi-
nation are properly trained. Case managers
highlighted the importance of training in
broadening their perceptions of adherence, im-
proving their understanding of the relationship
between adherence and substance abuse, en-
hancing their communication skills, and in-
creasing their knowledge of medications and
their side effects. The participants also empha-
sized that reimbursement for time spent doing
200
adherence counseling and coordination is an
essential component of a successful case man-
agement adherence program.
It is interesting to note that participating case
managers reported having witnessed a number
of significant changes in their clients during
their participation in the adherence program.
These included changes in case manager/client
communication style; for example, several case
managers noticed that clients were more open
to talking about the medications, and had ex-
perienced increased client communication.
Most case managers also perceived marked im-
provements in their clients’ adherence and
overall health.
DISCUSSION
Despite the challenges posed by maintaining
adequate levels of adherence to HAART, few
studies have demonstrated an impact on ad-
herence to HAART that is significant and ro-
bust.55 Social support and social service factors
are important in achieving desired outcomes in
HIV and other diseases, and case managers
have been shown to be effective in meeting
these needs. Therefore, it seems likely that a
case management approach would be success-
ful in helping HIV-infected clients adhere to
HAART. Although some researchers have rec-
ognized the promising role case managers
could play in supporting client HAART ad-
herence, few adherence intervention studies
have specifically examined case managers’ role
or their potential impact on adherence.49,54
Case managers are well positioned to promote
adherence, but need more support and train-
ing to be effective. Research indicates that train-
ing is essential given that many case managers
are already providing adherence coordination,
but do not feel skilled enough or properly
trained to provide these services.54 Therefore,
we decided to evaluate the statewide case man-
ager AACT program, a program designed to
help case managers successfully promote
HAART adherence among their clients. This
adherence coordination program was unique
in that it provided training and reimbursement
for time and travel to participating case man-
agers.
SHELTON ET AL.
Case managers consistently noted a broad
range of barriers that prevented clients from ad-
hering; most barriers were associated with pa-
tient characteristics and variables related to
treatment regimen. Case managers perceived
clients to face a number of barriers related to iso-
lation; these included physical isolation and lack
of transportation as a result of living in rural ar-
eas, social isolation from friends and family, and
a sense of powerlessness. These findings com-
plement previous findings that HIV-positive
clients face the potential loss of social support,
which in turn may impact adherence to anti-
retrovirals.11,24,25 The barriers associated with
living in rural areas noted in this study expand
upon prior findings regarding barriers that HIV-
positive rural clients face.56–58 Other primary
barriers that case managers identified included
the following: medication side effects; complex
psychosocial issues including depression and
anxiety; lack of knowledge about medical regi-
men; substance abuse; and literacy. These find-
ings are consistent with those of many prior
studies of patients.3,11,18–21,24,59–67
The role of the HIV/AIDS case manager in
general has not been well defined in the liter-
ature39; similarly, our results indicate that
HIV/AIDS case managers perceived them-
selves as taking on a number of roles, includ-
ing: “catch-all”; educator; police; resource; con-
sultant; coordinator; liaison; social support;
and advocate. After training, many case man-
agers perceived a counseling component to
be a part of their role, yet expressed that with-
out training, they would not have felt well
equipped to provide adherence coordination
and counseling. Most case managers empha-
sized the unique case manager–client relation-
ship that they perceived to be well suited for
promoting client adherence. Case managers
felt the uniqueness of this relationship lies in
the intimacy of the case manager–client rela-
tionship, regular communication and contact
with clients, and involvement in multiple as-
pects of their clients’ lives. These results also
indicate the importance and usefulness of clar-
ifying and eventually codifying the role of the
HIV/AIDS case manager, in order to success-
fully coordinate clients’ multiple social service
needs and support the high rates of adherence
that are needed among clients.
ROLE OF THE HIV/AIDS CASE MANAGER
Case managers identified several barriers
that prevent them from meeting these roles.
Prior to the training, case managers felt am-
bivalent about promoting ART adherence with
their clients because of their perceived lack of
skills and knowledge, as well as the perceived
toll of the side effects on their clients. Case man-
agers highlighted that lack of reimbursement
for their time and insufficient training and
knowledge in adherence coordination, HIV/
AIDS, and medications are significant barriers
to providing adherence coordination. Case
managers also emphasized their struggle to
keep professional boundaries with clients and
the need to encourage client responsibility.
Policy and research implications
Based on these findings, we make the fol-
lowing policy and research recommendations:
(1) employ state policies ensuring that all
HIV/AIDS case managers receive appropriate
adherence coordination training; (2) establish
systems that facilitate collaboration between
case managers and health care providers; (3)
establish state policies ensuring adequate re-
imbursement for case manager’s time spent
providing adherence coordination services; (4)
include social and environmental factors in the-
oretical frameworks and conceptual models of
adherence; and (5) conduct research to evalu-
ate the potential impact of case managers’ ad-
herence coordination services.
This study has suggested that case managers
can play a valuable role in promoting client ad-
herence, particularly since physicians do not al-
ways have adequate time to carry out all of the
necessary steps for comprehensive adherence
counseling.68 This study and others indicate the
importance of providing training to better pre-
pare case managers for the adherence coordi-
nation role.54 If appropriately trained, it is more
likely case managers will strengthen their ad-
herence coordination skills and increase self-ef-
ficacy; this in turn will impact the quality of
care received, and may help clients be better
prepared to cope with adherence challenges.
Case managers stressed the importance of
collaboration between themselves and the
range of other providers that clients have con-
tact with; they perceived communication be-
201
tween providers to benefit both the client and
case manager. It seems likely that communica-
tion between clinician and case manager would
be particularly helpful for managing client side
effects. This complements previous recom-
mendations from Reif and colleagues54 that
systems need to be put in place that enable case
managers to communicate with other health
care providers who may provide continued
support and information on adherence to case
managers when the case managers do not feel
knowledgeable about specific medicine adher-
ence issues.
Case managers emphasized that they also
need to be reimbursed for time spent providing
HAART adherence coordination services. Case
managers expressed relief that they were ade-
quately reimbursed for this time during the
AACT program. However, they expressed frus-
tration that they were not typically reimbursed
for these services, regardless of the fact that
many of them are already providing them. This
study suggests that if case managers are trained
to provide adherence coordination services, re-
imbursement is an essential component.
Case managers stressed the complexity and
difficulties associated with adherence and the
dynamics of all of the various issues going on
in the lives of clients. The perceived client and
case manager barriers to achieving optimal ad-
herence rates that were identified through this
study suggest that theoretical frameworks and
conceptual models of adherence need to in-
clude social and environmental factors.
More research is needed on adherence inter-
ventions for HIV/AIDS case managers to vali-
date the findings from this study further. In
particular, research is needed to investigate
which components make an adherence coordi-
nation program successful. The potential influ-
ence case managers’ ambivalence about med-
ications may have on client adherence warrants
further research. Future studies could evaluate
how case manager beliefs about antiretrovirals
may be improved by participation in adherence
coordination training.
This study has several limitations that
should be noted. First, the results are based on
a small sample that is geographically limited.
There is also a lack of objective adherence data
that can be used to validate changes in HAART
202
adherence of participating HIV-positive clients.
In addition, data was limited by having only 9
out of 16 case managers return client Care Plans
for HIV-positive clients at program comple-
tion. Despite these limitations, these findings
have significantly contributed to research in-
vestigating the potential role of case managers
in providing adherence coordination services,
an area in which research has generally been
limited.
CONCLUSION
An adherence coordination program for case
managers, such as the one in this study, is a
promising approach to supporting HIV-posi-
tive clients’ HAART adherence. It is more likely
that HIV-positive clients will be able to meet
the optimal levels of adherence if they are more
fully supported and educated not only by their
physicians, but by other well-trained health
providers who are knowledgeable about ad-
herence coordination. HIV/AIDS case man-
agers are uniquely positioned to understand
and address how adherence to antiretroviral
regimens fits within the context of their HIV-
positive clients’ lives. A program of workshops
and toolkits to increase case managers’ knowl-
edge of adherence and how to coordinate ser-
vices can strengthen their role in adherence.
This approach has the potential to improve
client adherence to antiretrovirals, which in
turn will likely improve the health of HIV-pos-
itive clients. An approach that incorporates the
promotion of adherence within the role of case
managers may also ultimately provide new op-
portunities for overall improvements in the
quality of life of HIV-positive clients.
ACKNOWLEDGMENTS
This work was supported by a grant from the
North Carolina Department of Heath and Hu-
man Services. The authors would like to ac-
knowledge the assistance and advice of Donna
White, Al Sherman-Huntoon, and Steve Sher-
man. A.H.K. is supported by National Insti-
tutes of Health grants R01-DA013826, R01-
GM06681, R01-GM064803, and K24 MH071191.
SHELTON ET AL.
CEG is supported in part by the National In-
stitute of Mental Health (NIMH) grant no. K23
MH01862-01.We would like to acknowledge
the support of the UNC Center for AIDS Re-
search (P30-AI50410). We would also like to
thank the participating case managers and
HIV-positive clients for sharing their experi-
ences, insights, and opinions. This paper does
not represent the policy of either the Agency
for Healthcare Research and Quality (AHRQ)
or the U.S. Department of Health and Human
Services (DHHS). The views expressed herein
are those of the authors and no official en-
dorsement by AHRQ or DHHS is intended or
should be inferred. At the time of this project,
Dr. Smith was on faculty with the University
of North Carolina, where he maintains adjunct
faculty appointments.
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Address reprint requests to:
Dr. Carol Golin
UNC Sheps Center for Health Services Research
725 Airport Road, Suite 208, CB #7590
Chapel Hill, NC 27599-7590
E-mail: Carol_Golin@med.unc.edu