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SOCIALWORKERS.ORG
N AT I O N A L A S S O C I AT I O N O F S O C I A L W O
R K E R S
NASW HIV/AIDS Spectrum: Mental Health
Training & Education of Social Workers Project
2009–2014 EXECUTIVE SUMMARY
Currently a profession of 600,000 strong, social workers are
recognized as
the largest provider of mental health services in the United
States. The
National Association of Social Workers (NASW) is the largest
membership
organization of professional social workers in the world. NASW
works to
enhance the professional growth and development of its
members, to create
and maintain standards for the profession, and to advance sound
social
policies. NASW also contributes to the well-being of
individuals, families and
communities through its work and advocacy. NASW is the lead
organization in
establishing professional practice standards for social workers
and setting
national credentials used by public and private agencies and
entities. NASW’s

130,000 members are affiliated with 55 state/local level
chapters in the
United States and U.S. territories. NASW is nationally
recognized for
professional development and continuing education through on-
line distance
learning, skill-building competency based workshops and
capacity building.
Beginning in 1995, NASW has implemented the NASW
HIV/AIDS Spectrum:
Mental Health Training and Education of Social Workers
Project (NASW
HIV/AIDS Spectrum Project). The NASW HIV/AIDS Spectrum
Project is funded
by the Center for Mental Health Services, of the Substance
Abuse Mental
Health Services Administration (SAMHSA HHS) to the NASW
Foundation. The
NASW Foundation is a 501(c)(3) organization affiliated with
NASW created to
enhance the well-being of individuals, families and communities
through the
enhancement of social work practice.
The goal of the NASW HIV/AIDS Spectrum: Mental Health
Training and
Education of Social Workers Project is to provide the necessary
HIV and
mental health practice skills for providers working in social
work, mental
health, and substance abuse fields to enhance and promote
culturally
competent practice with individuals, families, and communities
affected
by HIV/AIDS.

Working in collaboration with NASW chapters, federal and
state agencies,
national and state associations, public health and welfare
services,
universities, and community-based organizations, the HIV/AIDS
Spectrum:
Mental Health Training and Education of Social Workers
Project offers
education and training to social workers and allied providers on
the mental
health aspects of living with HIV/AIDS.
This executive summary highlights program implementation of
tasks defined
in CMHS Contract # 280-09-0292, and covers contract years
2009-2014.
DESIGNING CURRICULUM SPECIFICALLY
FOR THE SOCIAL WORK PRACTITIONER
The NASW HIV/AIDS Spectrum Project provides continuing
professional
development programs utilizing four curricula products: 1)
Providing
services in complex times: working with clients living with
HIV/AIDS and
co- occurring mental health disorders, 2) Addressing ethical
dilemmas in an
era of complex practice issues: HIV/AIDS as a case study, 3)
The role of the
mental health provider in treatment adherence: HIV/AIDS as a
case study,
4) Untangling the issues: mental health and substance use in
HIV care. Each
curriculum includes a Trainer Manual, Participant Manual,
Power Point

Presentation, and resource materials. Content include critical
‘Key Concepts’:
culturally competent practice, the bio-psycho-social-spiritual
perspective and
holistic approach, use of evidence-based interventions, and the
role of social
workers in providing HIV/AIDS preventive care, and treatment.
During the 2009-2014 contract, all four curricula were updated
to include
current evidence based bio-medical and psycho-social
interventions. The
curriculum was expanded to include information on the National
HIV/AIDS
Strategy, and the role of social workers in policy development
and practical
implementation at the micro, mezzo, and macro levels. As
requested, content
was modified to address cultural and treatment related issues for
older adults, youth and young adults, active military and
veterans
and their families, and lesbian, gay, bisexual, and transgender
(LGBT) persons.
The NASW HIV/AIDS Spectrum Project has developed
curricula
content focused specifically on the National HIV/AIDS Strategy
(NHAS). Launched in 2011, the “National HIV/AIDS Strategy:
Building the Professional Social Work Response through
Treatment and Advocacy” workshop created the premier
opportunity for social workers and allied health and mental
health providers to learn about the NHAS, dialog about
barriers to care and treatment, and identify interventions

at the individual, community, and systems levels.
Three PowerPoint presentations were translated into
Spanish: 1) El Rol del Trabajador Social en la
Estimulación de Adhesión al Tratamiento: VIH/SIDA
como un Estudio de Caso, 2) Abordando Dilemas
Éticos en una Era de Cuestiones Complejas dentro
de la Práctica: VIH/SIDA como un Caso de
Estudio, y 3) La Estrategia Nacional de
VIH/SIDA: Construyendo La Respuesta
Profesional del Trabajo Social.
SUPPORTING THE FEDERAL NATIONAL
HIV/AIDS STRATEGY THROUGH
WORKFORCE DEVELOPMENT
In the fall of 2011, NASW received funding from SAMHSA to
further the goals
of the National HIV/AIDS Strategy: 1) reduce the number of
people who
become infected with HIV, 2) increase access to care and
optimizing health
outcomes, and 3) reduce HIV-related health disparities.
In spring 2012, NASW launched the NHAS – NASW Chapter
HIV/AIDS
Partnership Initiative (Partnership Initiative). The Partnership
Initiative
provided targeted funding to NASW chapters serving cities and
emerging
communities identified by the Centers for Diseases Control and
Prevention
(CDC) as having the highest incidence of HIV and AIDS.
Through formal
collaborations with state and local health and mental health

agencies,
schools of social work, and community based programs and
AIDS Services
Organizations, these targeted workshops brought together
diverse
communities of providers committed to both increasing skill and
competencies
across diverse fields of social work practice.
Over the course of two years, the Partnership Initiative reached
3,200
participants through stand-alone workshops and
regional/national conferences.
STRENGTHENING THE WORKFORCE THROUGH
PROFESSIONAL DEVELOPMENT WORKSHOPS
Workshops are presented in collaboration with NASW Chapters,
schools of
social work, public and private health and mental health
agencies, federally
funded AIDS Education and Training Centers (AETCs) and
regional offices of
the U.S. Health and Humans Services (HHS), and AIDS
Services Organizations
and other community based programs. Through national,
regional, and local
meetings and conferences, the Faculty/Trainers and staff
presented
skill-building workshops in forty-three (43) states plus the
District of Columbia
and Puerto Rico.
The workshop content has increased the skills and capacities of
the social
work workforce. Participant feedback form, completed by over
5,300

participants of NASW HIV/AIDS Spectrum Project workshops
found 84%
indicating that they are both satisfied with the training and will
be
recommending it to a colleague; with nearly all (94%) reporting
that the
training helped to create a stronger understanding of the
challenges
HIV-positive clients face daily. Most of the respondents (88%)
agreed that
their knowledge of psychosocial interventions and mental health
approaches
was increased as a result of the workshop.
The NASW HIV/AIDS Spectrum Project reached over 6,500
social workers and
allied mental health care providers through the in-person skill-
building
workshops during program years September 2009 through
September 2014.
During the 2009-2014 CMHS Contract year,
the NASW HIV Spectrum Project reached 6,500
participants; with 5,300 OMB/CMHS evaluation
forms successfully collected. When evaluating one
or more of the workshops, participants responded
that the trainings provided by the NASW HIV/AIDS
Spectrum Project found 84% indicating that they
are both satisfied with the training and will be

recommending it to a colleague; with nearly all
(94%) reporting that the training helped to create a
stronger understanding of the challenges HIV-positive
clients face daily. Of note is that most (88%) felt
“their knowledge of psychosocial interventions and
mental health approaches was increased.”
BUILDING LOCAL AND REGIONAL CAPACITY
THROUGH TRAINING OF TRAINERS
The success of the NASW HIV/AIDS Spectrum Project is rooted
in a Training of
Trainers (TOT) Model. During the 2009-2014 CMHS Contract
years, thirty-six
(36) professional social workers were recruited and trained as
Faculty/
Trainers with the NASW HIV/AIDS Spectrum Project. All have
expertise in HIV
mental health, and bring additional practice expertise in child
welfare, school
social work, older adults and aging, LGBT youth and families,
women and
gender equity, violence prevention, substance use and
behavioral health,
medical social work, corrections, and military families and
veterans.

The TOT model includes on-going peer mentoring to build
provider networks
and share expertise and resources. Trainers have successfully
built collaborations
with state agencies (Departments of Health, Departments of
Mental Health
and Hygiene); with federal agencies and services (Veteran’s
Administration,
AETCs, Health and Human Services); with Schools of Social
Work (including
Historically Black Colleges and Universities); with local
community based
organizations and non-profit and for-profit businesses. Trainies
have built
networks and collaborations committed to forwarding the goals
of the
National HIV/AIDS Strategy and the NASW HIV/AIDS
Spectrum Project.
Trainer capacity is built and sustained through access to the
NASW HIV/AIDS
Spectrum Project Trainer Extranet. Launched in 2010, the portal
provides a
direct connection between Trainers, Senior Faculty, and staff.
The Extranet
houses current curricula products, resources and links,
monitoring and
evaluation documents, as well as a ‘chat space’ for on-line
information
sharing and mentoring.
REACHING SOCIAL WORKERS ACROSS THE
NATION THROUGH WEB-BASED INFORMATION
The Project’s webpage provides a central location for social
workers seeking
information about HIV/AIDS related practice and policy issues.

Social workers
and allied providers will find information about the National
HIV/AIDS
Strategy, workshop specific abstracts, resource links for mental
health care
providers, and information about the Mental Health Care
Providers in
Education (MHCPE) collaborative Partners (the American
Psychiatric
Association and the American Psychological Association). The
webpage
includes practice and policy factsheets and updates focused on
critical practice
issues such as hepatitis and HIV co-infection, HIV stigma and
discrimination,
HIV/AIDS and older adults, HIV/AIDS and Homelessness, and
Youth and
HIV/AIDS Prevention.
The NASW News, the award winning trade publication of
NASW, expands the
reach of HIV/AIDS practice information through on-line news
articles. In
November 2012 and September 2013, the NASW News posted
articles focused
on the National HIV/AIDS Strategy- NASW Chapter Partnership
Initiative. In
2014, the NASW News highlighted the work of
the Advisory Committee and a program discussion
with Douglas Brooks, Director, U.S. Office on
National AIDS Policy.
The Project also provides professional continuing education
through the NASW website. During the 2009-2014
program years, the NASW HIV/AIDS Spectrum Project

hosted two webinars presented in collaboration with the
NASW Specialty Practice Sections (SPS) Lunchtime Series: 1)
“HIV/AIDS Update: Infusing HIV/AIDS awareness into our
everyday practice,” and 2) The National HIV/AIDS Strategy:
Building the Professional Social Work Response at the Micro,
Mezzo, and Macro Levels of Practice.” Both programs provided
continuing education credits for social workers and allied
providers.
ADVISORY COMMITTEE PROVIDES
EXPERTISE AND LEADERSHIP
The role of the NASW HIV/AIDS Spectrum Project Advisory
Committee is to provide expertise on HIV/AIDS, mental health,
and
relevant practice and policy issues to the HIV/AIDS Spectrum
Project
programming and staff. Over the course of the 2009-2014
contract,
the Advisory Committee provided professionally driven
volunteer
leadership through curricula development and pilot testing,
assisting in
recruiting and identifying participants for the Training of
Trainers (TOT),
and served as Senior Faculty. The following persons served on
the
Advisory Committee: Lisa Cox, PhD, LCSW, MSW, Nathan
Linsk, PhD,
ACSW, Dimas Moncada, Jr., LCSW, Jill Sabatine, MSW, MPH,
LICSW,
Dianne Green-Smith, PhD, LMSW, ACSW, Melissa Sellevaag,
LICSW,
Terry Tauger, MSW, and Jeremy Goldbach, PhD, LMSW
(evaluator).
In program years 2011-2014, the NASW HIV/AIDS

Spectrum Project implemented a ‘follow-up’
web-based survey to gauge ‘classroom to practice’
utilization of the skill-building workshop content.
This successful program reached over 300
participants. Participants responses noted that
76% implemented skills learned in one (of five)
NASW HIV/AIDS Spectrum workshops, with
45% sharing information with clients.
2009–2014 EXECUTIVE SUMMARY » NASW HIV/AIDS
SPECTRUM PROJECT
Advisory Committee members provide ongoing expertise to
Project staff and
Trainers, assist in identifying key marketing areas for
workshops and related
projects, and represent NASW HIV/AIDS Spectrum Project -
within the public
social work arena – as requested by staff. Honoring the critical
role of
consumer involvement in HIV/AIDS clinical and advocacy
efforts, the Advisory
Committee is comprised of social workers across fields of
practice, including
persons living with and affected by HIV/AIDS.

LESSONS LEARNED – MONITORING
AND EVALUATION
All workshops and distance learning programming of the NASW
HIV/AIDS
Spectrum Project include a monitoring and evaluation
component. Utilizing
Participant Feedback Forms (OMB # 0930-0195), each
workshop participant
provides feedback on training content, qualitative assessment of
knowledge
and attitude change, and how content will be utilized in their
practice
setting(s). The Participant Feedback Forms include provider
demographics
such as race/ethnicity, gender, work setting, geographical
location, and level
of education. The data is analyzed quarterly, and participant
feedback
provides guidance for modifications in curriculum and/or skill-
building
training design.
In program years 2011-2014, as part of the NHAS NASW
Chapter HIV/AIDS
Partnership Initiative, a post-test web-based survey was
implemented. Reaching
over 300 participants, the post-test survey was designed to
gauge ‘classroom
to practice’ utilization of the skill-building workshop content.
In gauging how
participants utilize workshop content in their practice settings,
respondents
noted that seventy-six percent (76%) had implemented skills
learned in one
(of five) NASW HIV/AIDS Spectrum workshops; while forty-
five percent (45%)

had discussed or shared information with clients in their work
setting.
COMMITMENT TO HIV MENTAL HEALTH
TRAINING AND EDUCATION OF PROVIDERS
The NASW HIV/AIDS Spectrum Project continues to lead the
effort in
preparing social workers and allied professionals to provide
care and
treatment that promotes ethical practice utilizing research-
driven content
addressing mental health, substance use and medication
adherence.
In support of the National HIV/AIDS Strategy goal of providing
“specialized
training [to] alleviate HIV workforce shortages,” the Project
continues to grow
the abilities of social workers and allied professionals to meet
the emerging
needs of HIV in the 21st century.
For products and program information, please visit:
www.socialworkers.org/practice/hiv_aids/default.asp
NASW HIV/AIDS SPECTRUM PROJECT STAFF
Janice Harrison, Administrative Assistant
Dina Kastner, MSS, MSLP, Chapter Coordinator
Evelyn Tomaszewski, MSW, ACSW, Project Director
The NASW HIV/AIDS Spectrum Project was funded by the
Center for Mental
Health Services (CMHS), Substance Abuse Mental Health
Services Administration.
(CMHS Contract # 280-09-0292).

©2014 National Association of Social Workers. All Rights
Reserved.
Social Work and the HIV Care Continuum:
Assisting HIV Patients Diagnosed
in an Emergency Department
Amy Edmonds, Eric Moore, Andre Valdez, and Cheri Tomlinson
Social workers have played an integral role in society’s
response to the HIV/AIDS pandemic
since the discovery of the disease. As the landscape of the
epidemic has changed, so has the
social work response to it. Social workers are, and have been,
central to the success of TES-
TAZ (Test, Educate, Support, and Treat Arizona), which is a
nontargeted, routine opt-out
HIV screening program in the emergency department (ED) of
Maricopa Medical Center.
This article focuses on the crucial role social workers play in
every stage of program develop-
ment, implementation, and patient movement through the stages
of the HIV care continuum.
Social worker involvement with HIV-positive patients
diagnosed in the ED is imperative to
achieving patient viral suppression.
KEY WORDS: emergency department; HIV/AIDS; HIV care
continuum; linkage
to care; social worker
Since the start of the HIV/AIDS pandemic, social workers have

played an integral role in society’s response to the crisis (
Caputo, 1985).
Over the past three decades, many aspects of HIV
care and prevention and our approach to them have
changed. One thing that has not changed, however,
is the role social workers play in the care of people
living with HIV/AIDS (PLWHA) and in HIV pre-
vention programs. Social workers have long called
for the integration of treatment and prevention pro-
grams ( Freudenberg, 1994). Both the medical and
social services establishments have come to under-
stand that HIV treatment is HIV prevention. When
effective antiretroviral (ARV) treatment is combined
with more traditional prevention interventions, HIV
transmissions can be reduced by more than 95 per-
cent ( Cohen et al., 2013). For the first time since
what we now know as AIDS was reported in 1981,
we can discuss the control and even the end of the
global pandemic ( Fauci & Marston, 2013), concepts
that were unimaginable even five years ago.
BACKGROUND
For more than two decades, routine HIV testing
in hospital emergency departments (EDs) has been
contemplated as a tool for diagnosing unrecog-
nized HIV infection ( Kelen et al., 1988). In 2006,
the Centers for Disease Control and Prevention (CDC)
issued revised recommendations for HIV testing in
health care settings. These recommendations spe-
cifically include hospital EDs as one setting in which
routine, opt-out HIV screening should be consid-
ered. One goal of the revised CDC recommenda-
tions is to increase the number of HIV-infected
people who are aware of their infection ( Branson
et al., 2006). This awareness of diagnosis is the first

step in the HIV care continuum.
The HIV care continuum, a set of sequential
stages of HIV medical care and outcomes, provides
a population-level snapshot of progress toward
optimal health. The population level reviewed can
range from a small set of patients, as in this article,
up to a global scale. The stages of the HIV care
continuum are as follows: diagnosis, linkage to med-
ical care, retention in medical care, prescription of
ARV medications, and viral suppression ( Gardner,
McLees, Steiner, del Rio, & Burman, 2011; Horberg
et al., 2010; Horberg et al., 2011). Definitions used
for this analysis are included in Table 1. The ultimate
goal of the HIV care continuum is for PLWHA to
achieve viral suppression. Viral suppression reduces
HIV-associated morbidity, prolongs the duration and
quality of survival, restores and preserves immuno-
logic function, maximally and durably suppresses
plasma HIV viral load, and prevents HIV transmission
( U.S. Department of Health and Human Services,
238doi: 10.1093/sw/swv011 © 2015 National Association of
Social Workers
Panel on Antiretroviral Guidelines for Adults and
Adolescents, 2014). Viral suppression makes talk of
control and the potential end of HIV possible.
In the summer of 2010, the Obama administra-
tion released the first-ever National HIV/AIDS
Strategy for the United States (NHAS) ( White
House Office of National AIDS Policy [ONAP],
2010). Two main goals of the NHAS are to reduce

new HIV infections and to increase access to care
and improve health outcomes for PLWHA. Moti-
vated, in part, by these changes to the HIV/AIDS
landscape, in October 2010 Maricopa Medical Cen-
ter (MMC) began planning for the implementation
of nontargeted, routine, opt-out HIV screening in
the adult ED. MMC, located in Phoenix, Arizona,
is the anchor of the Maricopa Integrated Health
System (MIHS), the only hospital-based safety-net
health care system for the residents of Maricopa
County. The adult ED has approximately 45,000
visits per year. The HIV testing procedure is a
CDC-funded program known as Test, Educate,
Support, and Treat Arizona (TESTAZ).
During TESTAZ planning, one main concern
for ED physicians, social workers, and staff was to
ensure that patients newly diagnosed with HIV were
linked to outpatient medical care in a timely man-
ner. In alignment with the NHAS, it is our expecta-
tion that newly diagnosed HIV patients will be
linked to medical care within three months of diag-
nosis. The NHAS aims to increase linkage to care
nationally from 65 percent to 85 percent by 2015.
The physicians and staff in the ED at MMC agreed
that TESTAZ should strive to meet or exceed the
NHAS goals to ensure that patients are appropriately
linked to medical care and support services. Fur-
thermore, MIHS is committed to following newly
diagnosed HIV patients from the ED through the
HIV care continuum for the first year after diagnosis.
This article focuses on the critical role social workers
play in every stage of program development, imple-
mentation, and patient movement through the stages
of the HIV care continuum.

METHOD
This observational study used data reports and chart
reviews. TESTAZ was approved as exempt by the
MIHS institutional review board. Data collection
was mainly through reports extracted from the
MIHS electronic medical record (EMR). Data were
analyzed using Microsoft Excel (Microsoft Corpo-
ration, Redmond, Washington). During the plan-
ning stage, a social worker affiliated with MMC’s
adult ED was hired to work as the program coordi-
nator. By design, TESTAZ is a procedure of nontar-
geted, routine, opt-out HIV screening for all patients
of the adult ED between 18 and 64 years of age, if
other labs are drawn, regardless of medical com-
plaint. Unless the patient declines, consent for opt-
out routine HIV screening is inferred and occurs
after notifying the patient that the test will be per-
formed unless the patient declines testing.
We implemented TESTAZ with few exclusion-
ary criteria ( Geren et al., 2014). Exclusions include
patients with a known HIV/AIDS diagnosis, who
are intoxicated or otherwise unable to consent, who
are in the custody of law enforcement, those requir-
ing a level I trauma activation, and patients who
report having been tested for HIV in the previous
Table 1: Continuum of HIV Care Category Definitions
Category Definition Comment
Diagnosed Confirmed HIV-positive patients aware of their
HIV serostatus
Two of the 71 diagnosed patients were discharged

prior to their preliminary results being returned. As
a result, we have been unable to confirm their HIV
serostatus.
Linked Diagnosed patients who attended a medical
appointment with an HIV medical provider
within 90 days of their diagnosis
Fifty-eight of the 71 diagnosed patients have been
linked to medical care, with 50 of them in the
90-day time frame.
Retained Diagnosed patients linked to care, regardless of the
time frame, who received a medical service
between January 1, 2014, and June 30, 2014
Fifty-two of the 71 diagnosed patients meet the
definition.
Prescribed Diagnosed patients prescribed antiretroviral
medications
Fifty-four of the 71 diagnosed patients meet this
definition.
Suppressed Diagnosed patients whose most recent HIV viral
load was ≤200 copies/ml.
Forty-one of the 71 diagnosed patients meet the
definition.
Edmonds, Moore, Valdez, and Tomlinson / Social Work and the
HIV Care Continuum 239

12 months. Including HIV testing as a standard of
medical care in the ED reduces the stigma surround-
ing HIV testing. Routine, opt-out HIV screening
also reduces the complexity of testing based on
medi cal complaints or traditional behavioral assess-
ments ( Branson et al., 2006).
EMR customizations were needed for the ED
triage process to ensure the capture of required in-
formed consent information. Consent for HIV test-
ing is included with the general consent for medical
care. As with other testing for reportable commu-
nicable diseases in the ED, patients are informed of
mandatory reporting requirements in writing
through the general medical consent for treatment,
the conditions of admission and treatment, the
MIHS Notice of Privacy Practices, and the Patient
and Visitor Information packet. Patients are allowed
to ask questions and change their minds about HIV
testing at any time during their ED visit. Patients
older than 64 years may be tested if requested by the
patient or if there is clinical suspicion of undiag-
nosed HIV infection. Patients included in this
analysis (N = 85) were individuals confirmed HIV
positive in the MMC adult ED between July 11,
2011, and April 30, 2014. Patient medical records
were analyzed for engagement at each stage of the
HIV care continuum.
PROCEDURES
During the TESTAZ planning phase, two main
concerns expressed by staff were how to best deliver
the preliminary diagnosis and how to best ensure
that a newly diagnosed patient has access to HIV
primary medical care and support services. At MIHS,
ED-based social workers could be called on to help

the patient take those crucial first linkage-to-care
steps. The final decision was that, ultimately, the
on-duty social worker would assist the physician
with notification and initiate linkage to care due to
each person’s established role in the ED. Until social
workers could be trained with regard to TESTAZ,
a different process was in place (as described in the
next paragraph).
The procedure implemented at MMC in July
2011 indicated that when the laboratory identified
a preliminary HIV-positive result, the program co-
ordinator was contacted and asked to come to the
ED to meet with the patient and the physician. The
coordinator and the physician would meet with the
patient, and the physician would inform the patient
of the preliminary result. The physician and the
coordinator emphasized the need for additional
laboratory work to confirm the result. During the
ED visit, the coordinator provided support and con-
firmed contact information for the patient to com-
plete the necessary follow-up. Once the diagnosis
was confirmed, the coordinator contacted the pa-
tient to set up a meeting at the ED to inform the
patient of the confirmatory result and start the link-
age to medical care and support services processes.
A patient navigator was later hired and trained by
the coordinator to assist the newly diagnosed pa-
tients from the ED. The patient navigator also works
at the McDowell Healthcare Center (MHCC), the
MIHS-operated HIV primary care clinic. The pa-
tient navigator is available to assist with notifications
when a social worker is not on duty or when ad-
ditional help is requested.

A significant focus for EDs is to respond to the
increasing health concerns and medical needs of
underserved, underinsured, and marginalized pop-
ulations. Social workers and patient navigators in
an ED are well positioned to link patients to commu-
nity resources, support services, and outpatient
follow-up due to the characteristic function that an
ED imbues as a liaison between hospitals and the
populations served ( Madden, Carrick, & Manno,
2012). For this reason, MMC ED staff support the
active involvement of the coordinator, patient nav-
igator, and social workers as integral to the HIV
testing process. Social workers employed in hospital
EDs are well equipped to offer emotional support,
crisis counseling, and appropriate referrals in these
situations ( Silverman, LaPerriere, & Haukoos, 2009).
Social workers refer patients to the patient navigator
to facilitate engagement in care and retention in
medical care and services.
The patient navigator continues to follow newly
diagnosed HIV patients for one year post diagnosis
to ensure linkage to and retention in medical care.
During the follow-up period, the patient navigator
assists the newly diagnosed patient to establish a
habit of regular medical care and engagement with
support services. In an effort to move patients along
the HIV care continuum, the patient navigator also
works with patients to encourage adherence to pre-
scribed ARV medications.
After TESTAZ was established, a true routine,
opt-out HIV testing environment required social
work integration into the formal ED work flow for
preliminary HIV-positive results. ED social workers
are now involved with result notification, referral to

Social Work Volume 60, Number 3 July 2015240
the patient navigator, and provision of support dur-
ing the ED visit. The MMC ED has established a
system known as “5–30–5.” The system, developed
by the adult ED medical director, is used when
critical test results are returned to the patient. Al-
though the system is not specific to HIV test results,
we describe how 5–30–5 interacts with TESTAZ.
Under the 5–30–5 system, the physician, accompa-
nied by a social worker, delivers the preliminary
HIV-positive result to the patient. The physician
stays with the patient for about five minutes to an-
swer questions and provide support. The physician
then leaves the patient with the social worker for
about 30 minutes. During this half-hour, while the
physician attends to other patients, the social worker
provides support to the patient and begins the link-
age-to-care process by providing a one-page hand-
out about what to expect. This handout does not
mention HIV or AIDS, to preserve patient confi-
dentiality and self-determination. Both the hand-
out and the social worker inform the patient that
the Maricopa County Department of Public
Health (MCDPH) will be in contact for follow-up
and partner services. Social workers explain the pro-
cess of public health and partner notification in de-
tail to the patient and encourage him or her to work
with public health to identify partners who may
need to be tested for HIV so they are aware of their
status. At the end of the 30 minutes, the physician
returns to the patient to see if additional questions
have arisen and to check on the general well-being

of the patient.
RESULTS
MIHS was one of the evaluation sites for the new
CDC HIV laboratory testing algorithm ( CDC,
2013, 2014). Our HIV testing procedure includes
the collection of an HIV viral load blood sample
to confirm a preliminary diagnosis. Data collected
from the EMR allow us to monitor patient progress
through the HIV care continuum. Additional de-
mographic information is also collected. Table 2
includes selected demographic information from
the confirmed HIV-positive patients, the general
MMC adult ED population, patients who were
tested, and those who actively opted out of HIV
screening. Not included in the table are the patients
who were not tested due to the exclusionary cri-
teria discussed earlier. Opt-out testing in the ED
has been crucial in identifying previously HIV
unaware patients who may not have otherwise been
tested for HIV. Of the patients who were diagnosed
with HIV in the ED, 45 (52.9 percent) had been
tested for HIV in the past. Anecdotally, a main
reason for patients not having been tested before is
the self-perception that the patient was not at risk
for HIV infection. This particular aspect of routine,
opt-out HIV screening warrants further research.
Another avenue for additional research is to explore
how many of the 85 newly diagnosed HIV patients
had sought care from other EDs prior to their visit
at MMC.
Our results demonstrate the importance of a
routine opt-out testing program to identify indi-
viduals who may not seek out more traditional

targeted testing venues because they do not believe
they are at risk of contracting HIV. For example,
Table 2 shows that 28.2 percent of the new HIV
diagnoses in the ED report a heterosexual trans-
mission risk. More traditional, targeted HIV test-
ing programs have tended to concentrate less on
this particular population ( Lyons et al., 2013). This
is more than double the rate of the larger PLWHA
populations in both Maricopa County and the
state of Arizona. Through routine opt-out HIV
testing, TESTAZ reduces stigma because it is of-
fered to all patients who present to the ED regard-
less of medical complaint. TESTAZ, as designed
and implemented at MIHS, offers the additional
benefit of assisting patients with linkage to medi-
cal care and following patients for one year after
diagnosis.
During the review period, the ED experienced
an opt-out rate of 15.3 percent for HIV testing,
which is lower than expected. The population with
the highest opt-out rate (44.1 percent) self-identified
as Hispanic or Latino. This ethnic group also repre-
sents the highest proportion (48.2 percent) of the
newly diagnosed patients. Although Hispanic/Latino
patients represent the largest percentage of those
who tested positive, it is interesting to note that the
case-finding rate for this population is 120 per
100,000. Among black or African American newly
diagnosed patients, the case finding rate is 233 per
100,000. In the state of Arizona, there are 207 His-
panic/Latino PLWHA per 100,000 population and
739 black/African American PLWHA per 100,000
population. TESTAZ demonstrates that health dis-
parities can be narrowed through routine opt-out
HIV screening in an ED. For every Hispanic case

identified per 100,000 in our ED, we identified
1.94 African American cases. However, statewide,
Ta
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http://www.azdhs.gov/phs/edc/odis/hiv-
epidemiology/reports/index.php?pg=annual
http://factfinder.census.gov/faces/nav/jsf/pages/index.xhtml
for every Hispanic PLWHA per 100,000, there are
3.57 African American cases.
During the review period, there were 85 indi-
viduals confirmed HIV positive. Fourteen of the 85
patients were removed from the HIV care contin-
uum analysis for the following reasons: Five patients
have relocated out of state, four are deceased, two
are currently incarcerated, two were linked to care
outside of the Maricopa Integrated Health System,
and one was discharged directly to hospice care.
Table 1 shows where each of the remaining 71 pa-
tients is along the HIV care continuum. Fifty-eight

of the 71 patients (81.7 percent) have been linked
to medical care; 41 patients (57.7 percent) have
achieved viral suppression.
On occasion, a patient is discharged from the ED
before preliminary HIV-positive results are returned.
In those instances, the patient is called or contacted
by mail urging the return to the ED to receive criti-
cal test results. Nine patients with a preliminary HIV-
positive test have not responded to repeated contact
attempts by both MIHS and public health staff. Rea-
sons for not responding vary; the two most common
reasons are that the patient is homeless or that the
patient did not provide current contact information
during ED registration. Partner Services at MCDPH
has been unable to locate the lost to follow-up pa-
tients to engage them in outpatient HIV medical care
and support services. From record review and follow-
up with Partner Services, there is suspicion that a few
of the patients who have not responded may have
known or suspected their HIV status and did not want
to confront or acknowledge the diagnosis.
To address this linkage-to-care gap, the patient
navigator and ED social workers have a list of the
lost to follow-up patients. If these patients present
to the ED again, the patient navigator, the social
worker, or both will meet with them to initiate
linkage to care. In addition, staff affiliated with other
HIV prevention programs at MIHS receive a daily
report of known PLWHA who present at our ED.
If needed, program staff assist known HIV patients
to re-engage in outpatient medical care. The pro-
gram manager has been provided with a list of the
TESTAZ lost to follow-up patients in the event they
present to the ED. The program coordinator con-

tinues to explore opportunities to enhance the pro-
gram to ensure that patients are linked to care in a
timely manner.
The case study that follows demonstrates the
process of nontargeted, routine opt-out HIV
testing in the ED and the benefit of linking patients
to medical care and support services in a timely
manner to enable positive health outcomes. The
case study illustrates the crucial role the social
worker plays in helping patients move through the
HIV care continuum, specifically for a new HIV
patient diagnosed in the ED. The social worker is
present when the patient is informed of the pre-
liminary HIV-positive result in the ED; assists the
patient to link to medical care and support services;
encourages the patient to adhere to ARV medica-
tions, with the goal of viral suppression; and pro-
vides emotional support and referrals to social
services agencies to facilitate the patient’s medical
follow-up.
CASE STUDY
In spring 2012, a pregnant woman who had not
received prenatal care arrived at MMC complaining
of abdominal pain. The patient did not opt out of
HIV testing. An HIV test was completed, and the
patient received a preliminary positive HIV result.
The physician provided the notification of a pre-
liminary positive HIV result with the assistance and
support of both the coordinator and the patient
navigator. The patient was visibly upset and con-
cerned about her pregnancy and her two other
children. The coordinator and patient navigator
provided support and resources to the patient and

assured her that they would contact her as soon as
the confirmatory test was returned.
Two days later, the coordinator received a telephone
call from the MMC laboratory that the patient’s
viral load was greater than 10,000,000 copies/ml. The
coordinator followed up with the patient navigator,
who indicated that he would contact the patient.
The patient was at risk of falling out of medical care
due to substance use, unstable housing, and limited
social support. The patient, who was enrolled in
Medicaid, scheduled an appointment at MHCC.
The patient was linked to medical care by attending
her first appointment 30 days after diagnosis. The
patient was prescribed ARV medications at her sec-
ond appointment due to her pregnancy and high
viral load. She followed up with her HIV and pre-
natal medical appointments and took her ARV
medication as prescribed. In fall 2012, the patient
delivered a healthy baby. At the time of delivery,
the patient’s viral load was less than 700 copies/ml.
The patient has continued to follow up with
all scheduled medical appointments, is adherent to
her medication regimen, and has achieved viral
suppression. To date, her baby has completed all
follow-up appointments and has tested negative
for HIV.
IMPLICATIONS FOR PRACTICE
“Social workers help people cope with challenges

in their lives. They help with a wide range of situ-
ations, such as adopting a child or being diagnosed
with a terminal illness” ( U.S. Department of Labor,
Bureau of Labor Statistics, 2014). The HIV/AIDS
epidemic was first documented in the United States
in 1981. Social workers have helped people cope
with an HIV diagnosis since the earliest days. As the
landscape of the epidemic has changed, so has the
social work response to it. Social workers have and
continue to play an essential role in the success of
TESTAZ. In keeping with the NHAS vision, social
workers play a crucial role in facilitating unfettered
patient access to “high-quality, life-extending care.”
As illustrated by our case study, at every stage of the
HIV care continuum, social worker involvement
with HIV-positive patients is central to achieving
viral suppression. To further illustrate our progress,
Figure 1 shows where our newly diagnosed patients
are on the HIV care continuum. Figure 1 also in-
cludes national benchmarks by way of comparison
( White House ONAP, 2013). TESTAZ exceeds the
national average in diagnosing patients with HIV,
linking patients to follow-up medical care, retaining
patients in medical care, adherence to medications,
and viral suppression. Having the social worker and
the patient navigator involved with the patient from
the initial HIV diagnosis in the ED and following
the patient for at least one year after diagnosis has
been paramount to the success of the TESTAZ pro-
gram and patient health care outcomes.
MIHS is a public safety-net hospital, so it comes
as no surprise that the majority (58.5 percent) of our
ED patients are uninsured at the time of the encoun-
ter. What was surprising to us is the 78.8 percent

uninsured rate for our newly diagnosed patients.
One of the steps that goes with linking patients to
medical care is to help the newly diagnosed patient
access programs that pay for HIV-related medical
care. Social workers play a crucial role in helping
patients navigate the application process for Medic-
aid and the Ryan White HIV/AIDS Program.
Figure 1: Continuum of HIV Care Comparisons
Notes: National baseline data on patients prescribed
antiretroviral medications could not be located. TESTAZ =
Test, Educate, Support, and Treat Arizona.
An unintended benefit of TESTAZ is that ED
nursing and physician staff have become more vig-
ilant when working with known HIV-positive pa-
tients who are not in care. Physician and nursing
staff have begun referring these patients to the social
worker to assist with reestablishing HIV medical care
and support services. The MMC ED staff have em-
braced TESTAZ and recognized the benefit of
having social workers involved in the process of
informing patients of a new diagnosis and linking
patients to outpatient HIV medical care.
To make HIV testing in the MMC adult ED
routine under an opt-out scenario, it was crucial
to train ED social work staff to assist with the de-
livery of preliminary HIV-positive results, provide
the patient with emotional support and referral to
community resources, and facilitate the connection

with the patient navigator to link the patient to
medical care. MIHS has found that social workers
and patient navigators are critical for the success
of reaching optimal long-term outcomes (for ex-
ample, follow-up with medical care and referrals
to additional resources). This report shows that,
with regard to nontargeted, opt-out HIV testing
in an adult ED, the social worker and the patient
navigator play an integral role as patients begin
engagement along the HIV care continuum. The
success of MIHS’s linkage to care has been attrib-
uted to having the social worker and the patient
navigator involved in the process from initial
notification to linkage to and retention in HIV
primary medical care to the ultimate goal of viral
suppression.
REFERENCES
Arizona Department of Health Services. (2014). HIV/
AIDS annual report: State of Arizona. Retrieved from
Branson, B. M., Handsfield, H. H., Lampe, M. A., Janssen,
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Amy Edmonds, LMSW, is TESTAZ program coordinator,
and Eric Moore, BSW, is HIV program manager, Maricopa
Integrated Health System, Grants and Research, Phoenix, AZ.
Andre Valdez, PhD, is research scientist, Stanford Healthcare,
Stanford, CA. Cheri Tomlinson, MPA, is vice president of
grants and research, Maricopa Integrated Health System, Grants
and Research, Phoenix, AZ. Address correspondence to Amy
Edmonds, Maricopa Integrated Health System, Grants and
Research, 2601 E. Roosevelt, Phoenix, AZ 85008; e-mail:
[email protected]
Original manuscript received September 2, 2014
Final revision received January 20, 2015
Accepted February 10, 2015
Advance Access Publication April 28, 2015
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Psychosocial Stressors of Families Affected
by HIV/AIDS: Implications for Social
Work Practice
BRONWEN LICHTENSTEIN, PhD
Department of Criminal Justice, The University of Alabama,
Tuscaloosa, Alabama, USA
and Rural Center for AIDS and STD Prevention, University of
Indiana,
Bloomington, Indiana, USA
MARSHA S. STURDEVANT, MD
Department of Pediatrics, Division of General Pediatrics and
Adolescent Medicine, and
Alabama Ryan White Part D Program, The University of
Alabama at Birmingham,
Birmingham, Alabama, USA
ANIL A. MUJUMDAR, JD
Board of Directors, AIDS Alabama, Birmingham, Alabama,
USA and Haskell Slaughter
Young & Rediker, LLC, Birmingham, Alabama, USA
This study identified the psychosocial stressors of low-income
families who were affected by HIV=AIDS in Alabama. Methods
consisted of personal interviews with 12 social workers at
public

agencies and a review of social work charts for 80 clients at an
HIV clinic for mothers and children. The combined results
indicated that families were likely to experience housing insta-
bility, family breakdown, mental illness, behavioral problems,
and stigma. Younger children typically lived with their mothers,
while older biological children often resided with relatives or in
The research for this article was supported, in part, by the
Innovative Ideas Grant G5
4311-51 from the Alabama Council for Developmental
Disabilities (ACDD) and the Alabama
Department of Mental Health and Retardation (ADMHR).
Thanks go to Elmyra Jones and
Debra Florea of the ACDD; to Nan Bashinsky, Becky
Armstrong, and staff of the Family Clinic
at The University of Alabama at Birmingham; to Stanley L.
Brodsky, R. Nick Johnson, and
Kathy Hiers for their technical contributions; to the anonymous
reviewers for helpful com-
ments on earlier drafts of the article; and to AIDS Outreach
staff in Alabama for their support
and participation.
Address correspondence to Bronwen Lichtenstein, PhD,
Department of Criminal Justice,
The University of Alabama, 430 Farrah Hall, Tuscaloosa, AL
35487-0320, USA. E-mail:
[email protected]
Journal of HIV/AIDS & Social Services, 9:130–152, 2010
Copyright # Taylor & Francis Group, LLC
ISSN: 1538-1501 print=1538-151X online
DOI: 10.1080/15381501003795717
130

foster care. Social workers perceived mental health conditions
such as depression and anxiety to be common among women
caregivers. Behavioral problems and learning difficulties were
frequently reported among children but children who were not
living with HIV=AIDS did not have the same access to health
care
and social services as their siblings who were living with HIV=
AIDS. This outcome is relevant to social workers because the
children who were affected by HIV=AIDS outnumbered the
children who were living with HIV=AIDS by a ratio of 3 to 1.
Find-
ings suggest that a model of care that involves funding for
family-centered services for caregivers and children would
provide
a useful foundation for building stronger, more resilient
families.
KEYWORDS families, HIV=AIDS, psychosocial stressors,
social
services
INTRODUCTION
HIV=AIDS in the United States increasingly affects women of
childbearing
age, most of whom are primary caregivers for their children.
This trend is
evident in clinics and AIDS Service Organizations (ASOs)
around the nation.
Whitmore, Zhang, & Taylor (2009) identified a 36% increase in
U.S. women of
childbearing age who were living with HIV=AIDS during a six
year period
from 2000 to 2006, with 8,000 pregnancies for these women in
2006 alone.

As described by Lichtenstein (2008) and Schable et al. (1995),
such women
often live in low-income households with inadequate housing
and social sup-
port, and they are likely to experience considerable stress from
chronic illness
or the prospect of death. These stressors are relevant to social
work practice
for three reasons: 1) HIV-affected families are an underserved
population, 2)
such women often do not relinquish their children regardless of
the severity of
disease (Schuster et al., 2000, and 3) social support from family
or community
is often lacking (Hughes & Caliandro, 1996; Lichtenstein,
Laska, & Clair, 2002).
The term ‘‘family affected by HIV=AIDS’’ came into vogue in
the United
States in the 1990 s when it was apparent that large numbers of
women,
particularly in low-income communities of color, were being
diagnosed with
HIV=AIDS (Centers for Disease Control and Prevention [CDC],
2007). At the
same time, traditional (i.e., individualized) approaches to HIV
care were
being challenged by a simple fact—medical advances had
enabled HIV-
infected people to live longer and healthier lives. This shift was
characterized
by better reproductive health for women who were living with
HIV=AIDS, as
well as changes in how children were being affected by
HIV=AIDS. For
example, while fewer babies were being diagnosed HIV-positive

once
mothers received antiretroviral medicines during pregnancy,
such gains were
Psychosocial Stressors of Families Affected by HIV/AIDS 131
offset by sharp increases in the number of children who live in
families
affected by HIV=AIDS (Nostlinger et al., 2004; Townsend et
al., 2008;
Whitmore et al., 2009). This outcome presented a conundrum
for providers
because care was available only to HIV-affected adults and
children; children
who were affected by HIV=AIDS comprised the large majority
of dependents
in such families but were excluded from receiving support
services
(Brackis-Cott, Mellins, Dolezal, & Spiegel, 2007).
What happens if children who are affected by HIV=AIDS do not
receive
support services? Elkington, Bauermeister, Brackis-Cott,
Dolezal, and Mellins
(2009) noted that such children typically live in impoverished
households in
risky neighborhoods where life is burdened by the prospect of
parental
illness and death. Such children are likely to suffer from
depression, anxiety,
social withdrawal, learning difficulties, and attention deficits
(Brackis-Cott
et al., 2007). Lee, Gortmaker, McIntosh, Hughes, and Oleske
(2006) reported

that children aged 5–11 years who were affected by HIV=AIDS
had lower
psychological functioning compared to their peers who were
living with
HIV=AIDS. The authors hypothesized that differential access to
health and
social services was a causal factor; that is, children living with
HIV=AIDS
functioned at a higher level because they had greater access to
services than
children who were affected by HIV=AIDS. Gadow et al. (2010)
and Forehand
et al. (1999) also noted how children who were affected by
HIV=AIDS
experienced greater psychosocial difficulties than other
children, especially
in terms of academic or social functioning. The Interagency
Coalition on
AIDS and Development (2002) stated that it should not be
surprising that
children who are affected by HIV=AIDS experience these
psychosocial stres-
sors because: ‘‘[They] live with long periods of uncertainty and
intermittent
crises . . . Children who live through their parent’s pain and
illness frequently
suffer from depression, stress, and anxiety’’ (p. 2).
These outcomes are sobering for children who have yet to
garner the
public sympathy, political attention, social support, and medical
services that
are routinely provided to HIV-infected adults and children
through The Ryan
White Comprehensive AIDS Resources Emergency (CARE) Act
of 1990. The

Ryan White Act was passed to provide treatment and services to
uninsured,
low-income people with HIV=AIDS, and is the payer of last
resort for most
individuals who receive HIV care (Health Resources and
Services Administra-
tion [HRSA], 2008). In 2006, The Ryan White Treatment
Modernization Act
(Part D) emphasized ‘‘family centered care’’ as a policy focus,
so that family
members who were affected by HIV=AIDS were eligible for
some services
(HRSA, 2008). However, the lack of adequate funding even for
core services
(i.e., medical treatment for clients with HIV=AIDS) meant that
few family mem-
bers who were affected by HIV=AIDS received these ancillary
services (South
Carolina Department of Health and Environmental Control,
2009). The Joint
Learning Initiative on Children and HIV=AIDS (2009) has
urged government
officials to provide resources for such children in order to
provide families with
132 B. Lichtenstein et al.
a strong foundation for their future. This policy change calls for
funding for a
family systems approach to HIV=AIDS rather than the
individual-based for-
mula that has existed in the United States since 1990.
This article examines psychosocial stressors for family members

who are
affected by HIV=AIDS in Alabama. These families are often the
largest single
group of clients being served by social service agency personnel
who often
struggle to find the resources to help them (Southern AIDS
Coalition, 2008).
Alabama is primarily a rural state in which African American
women rep-
resent the majority of caregivers who are living with HIV=AIDS
(Lichtenstein,
2008). A defining characteristic of this population is that family
circumstances
in relation to poverty, housing, and access to health care and
services are
often dire regardless of HIV status. Adult unemployment in
Alabama is
among the highest in the nation (Bureau of Labor Statistics,
2010) with
16.6% of residents living below the poverty line (U.S. Census
Bureau,
2008). Alabama also ranks 45th in the nation for children living
in poverty,
46th in high school drop-out rates, and 48th respectively for
infant mortality,
percentage of low-birth-weight babies, infant mortality, and
overall quality of
life (Annie E. Casey Foundation, 2009).
The broader goal in collecting psychosocial data from ASOs and
clinics
was to generate information on the type of stressors affecting
families with
HIV=AIDS with a view to identifying the need for family-
centered social
services for this vulnerable population. The study used

qualitative methods
from multiple sources to identify psychosocial stressors as
reported by both
providers and recipients of HIV services in the state. We
followed the example
of Brackis-Cott et al. (2007) and Fair and Brackett (2008) in
defining children
affected by HIV=AIDS as minor dependents who reside with
mothers living
with HIV=AIDS. As the study progressed, we expanded the
definition to
include children residing with a sibling or a caregiver who was
living with
HIV=AIDS (e.g., mother, grandmother, or aunt) because these
children were
included in family assessments and in clinic reports to HRSA.
METHODS
Synopsis
The study was conducted at 10 agencies and two specialist HIV
clinics for
mothers, adolescents, and children in Alabama. The clinics are
federally
funded for social services and HIV care through Part D of The
Ryan White
Act. Twelve social workers were interviewed individually at
these sites,
followed by a chart review at one of the clinics. The social
worker interviews
provided narrative information on psychosocial stressors
involving families
affected by HIV=AIDS, while the chart review provided case
histories of
clients who were living with HIV=AIDS and their family

members. This
dual approach to data collection followed the Pope and Mays
(2000)
recommendation for multiple sources and perspectives on
health-related
phenomena.
Procedures
Approval for each aspect of the research was obtained from
institutional
review boards (IRBs) at The University of Alabama at
Tuscaloosa and The
University of Alabama at Birmingham. The study began with
interviews of
a convenience sample of social workers who were recruited
primarily by
the third author (A.M.), a member of the research team who was
known to
the social workers in this study through agency affiliations and
pro-bono
legal advocacy for clients at ASOs. AM was aware of IRB
standards and
was supervised by certified IRB personnel during the
interviewing process.
All three authors are members of the Governor of Alabama’s
AIDS Com-
mission on Children, Youth, and Adults who have collaborated
in
AIDS-related advocacy, service, and research with personnel at
ASOs and

public HIV clinics in the state over a 15-year period.
Most of the social workers were employed at ASOs or public
HIV clinics
and everyone who was approached for the study was available
for interview.
The first and third authors conducted interviews with the social
workers, either
by telephone or in person, over a 3-month period. Phone
interviews were con-
ducted if schedules or the distance to rural clinics made face-to-
face meetings
impracticable. Semistructured schedules were developed for
these interviews.
Each schedule consisted of 4 items about caseloads and
services, 8 items on
demographic, family, and mental health status of clients and
families, and
11 items specifically on the social demographics and
circumstances of children
who were affected by HIV=AIDS. All items were open-ended.
Verbal consent
was obtained and recorded on the participant’s interview guide
for the tele-
phone interviews. Written consent was obtained prior to the
individual inter-
views. Verbatim written notes were taken during both the
telephone and
in-person interviews and were typed up into interim reports. All
written notes
and typed reports were sent by fax or email to the first author
(B.L.) for
safe-keeping and data management. Notes for the typed reports
were then
transferred into a Word document in which responses were
organized accord-

ing to main categories from the interview guide for analysis at a
later date.
For the chart reviews, a trained assistant collected information
about
clients and their families on a weekly basis over a 2-month
period. Clients were
defined as children, adolescents, and adults who were living
with HIV=AIDS as
well as infants who were awaiting diagnosis. The charts for
these clients
spanned an 8-year period from 1999 to 2006 inclusive. Each
chart consisted
of demographic information (e.g., name, gender, age, HIV
status, and eth-
nicity) and psychosocial information from date of intake to the
client’s most
recent visit. In the case of adults and adolescents, this
information had been
obtained by the social worker manager during face-to-face
psychosocial
assessments with the client. In the case of infants and young
children, the social
worker manager had obtained relevant information from the
primary caregiver
in keeping with protocols for public HIV clinics in Alabama.
Information about
resident and nonresident children had also been obtained from
caregivers.
The research assistant recorded client information on social

demo-
graphics, mental health status, domestic violence, and other
factors such as
school progress or work and changes to family history since
entering care at
the clinic. Information about family members was collected
from the primary
client’s file. This information included social demographics,
family compo-
sition (e.g., household members living at the same address),
HIV status of
family members, number and age of siblings, behavioral issues,
school
performance, and home environment (e.g., caregiver’s drug or
alcohol use;
domestic violence in the home). Systematic sampling was
conducted by select-
ing every third chart from a list of clients who attended the
weekly clinics.
These data were then entered into an Excel Spreadsheet for data
management.
To protect the identity of this sensitive population, all names
and addresses
were replaced with unique identifiers. Both the typed interview
notes and
the chart review data were stored on a password-protected
computer. Hard
copies of the data were kept in a locked cabinet in the first
author’s office.
Sampling
SOCIAL WORKERS
The 12 social workers (all women) were experienced
practitioners who had

been employed for 5 or more years at the ASOs, clinics, and
state agency in
Alabama. With the exception of the family clinics and state
agency, the mis-
sion of these organizations was to serve adults who were living
with HIV=
AIDS. However, the social workers had daily contact with
young children
who accompanied their parents to appointments and=or who
attended social
events at the agencies. Rural social workers (n ¼ 5) typically
were responsible
for managing staff and activities at small agencies, while the
urban social
workers (n ¼ 7) supervised social work units or provided client
services such
as health benefits, housing, and transportation. Job descriptions
included case
manager, social services coordinator, unit manager, and
executive director.
CLINIC CHARTS
The total clinic sample consisted of 141 adults, adolescents,
children, and
infants who were either living with HIV=AIDS or who were
affected by HIV=
AIDS. The clients with HIV=AIDS comprised 12 adults, 37
adolescents, and
12 children aged 2 years or older (N ¼ 61). A total of 19 infants
were awaiting
diagnosis; these children were primary clients who had their
own charts and
were eligible for all medical and social support services at the
clinic until their

own HIV status could be finalized through antibody testing
(typically between
12 and 24 months of age). Thus, a total of 80 clients in the
sample received the
full array of services at the clinic (hereafter known as ‘‘primary
clients’’). The
family sample (N ¼ 61) consisted of children aged two years or
older who were
not seropositive but who were residing in the same household as
the primary
clients living with HIV=AIDS (hereafter known as ‘‘family
members’’). Although
they did not have their own charts or receive medical services,
family members
were included in clinic reports to HRSA. As noted, details of
these children were
recorded in family histories on the primary client’s chart.
Details about non-
residential caregivers, siblings, and children did not appear in
these reports
and were not included in totals for the clinic sample.
Clinic records for the primary clients (i.e., children and adults
who were
living with HIV=AIDS and infants who were awaiting
diagnosis) defined
adults as being 25 years and older, adolescents as between 13
and 24 years
old, children as between 2 to 12 years old, and infants as
between 0 and 2
years old. Distribution of the sample by age, gender, and
ethnicity was rep-

resentative of the clinic population as a whole. Most clients
were African
American (83%) and female (81%), with many women being
referred to
the clinic during pregnancy. Approximately one sixth of the
HIV-infected
sample (15.1%) consisted of male clients, with all of these
clients being
infants who were awaiting diagnosis, or children or adolescents
who were
living with HIV=AIDS.
ANALYSIS
The analyses were conducted after both the interviews and chart
reviews had
been completed. The Framework Approach was used to analyze
the qualitat-
ive interview data according to the principles of applied
qualitative research
(Pope & Mays, 2000). This approach utilized the interview
guides as a frame-
work to identify a priori themes for the analysis. Initial coding
for these data
was based on the main topic areas in the interview guide (e.g.,
caseloads ¼ 1,
social demographics ¼ 2, family circumstances ¼ 3, maternal
health ¼ 4,
impact on children ¼ 5, children’s needs ¼ 6). Then, subcodes
were created
for themes that emerged from responses for each main topic
area (e.g.,
responses for ‘‘family circumstances’’ were subcoded as
follows: single par-
ent household ¼ 3a, poverty ¼ 3b, housing instability ¼ 3c,
domestic

violence ¼ 3d, stigma=discrimination ¼ 3e). The coding was
refined further
by cross-matching all statements for each theme (e.g., stigma)
with responses
for each main topic area in the interview guide. This process
yielded
information on how the themes intersected in multiple ways in
the lives of
HIV-affected families (e.g., stigma was identified in relation to
family circum-
stances, maternal health, and impact on children).
All coding, subcoding, and matched responses were reviewed by
the
first author and a trained research assistant for accuracy and to
identify
patterns of convergence or divergence in the data. The
responses were
remarkably convergent, so for examples under ‘‘family
circumstances,’’ most
responses referred to single parenthood, poverty, housing
instability and dis-
crimination, and under ‘‘impact on children,’’ responses
typically referred to
poverty, mother’s ill-health, absence of fathers, housing
problems, and
stigma. Differences occurred mainly in relation to caseloads and
the
urban-rural context of client services or needs. At the end of
this analytical
process, the first and third authors reviewed each interview

schedule for
‘‘thick description’’ (Geertz, 1973) that could be used to
describe family
composition and children’s circumstances in the results section
of this article.
All qualitative results were summarized in a report, which was
then discussed
by all members of the research team. This iterative process
yielded five main
themes in relation to children in HIV-affected families: poverty,
stigma,
mental health, physical health, and orphanhood. The themes are
discussed
and summarized in the qualitative results.
The chart data were tabulated for frequency distributions for
sociodemo-
graphic variables such as age, ethnicity, gender, family
composition, income,
and housing. Cross-tabulations were performed for mental
health status, home
environment (e.g., family fights or family breakdown), school
performance,
and legal status (e.g., incarceration or probation). For each
client and family
member, a complete psychosocial history was compiled from
social
demographics and chart notations in the 15-column Excel
spreadsheet. These
histories were then organized into separate combinations or
groupings (e.g.,
mothers and children in residence; mental health and behavior
by age cate-
gory, siblings by living arrangement) for more detailed
information on psycho-
social stressors by subgroup or variable. This process was

repeated for each
grouping or variable until the most important results had been
identified with
regard to psychosocial stressors for families affected by
HIV=AIDS.
RESULTS
The qualitative and chart results are presented sequentially. The
results of the
individual interviews are presented first, followed by
descriptive data on all
clients from the chart review. The themes for the qualitative
section are
illustrated by quotes from interview narratives, with a unique
identifier
assigned to each speaker (e.g., SW1 or SW2) for confidentiality.
Tables and
graphs are presented for results that are pertinent to social work
practice.
Interviews
POVERTY
Poverty was a theme evoked by all social workers in relation to
daily strug-
gles with HIV=AIDS, dangerous neighborhoods, discrimination,
temporary
housing, or homelessness. Poverty, stigma, housing instability,
and parental

ill-health thus were interrelated stressors for children. Said one
social worker;
‘‘The issues are the same even when the kids aren’t infected.
There’s no
money or child support. The kids’ fathers are often not
involved, financially
or otherwise. They’re in bad housing, they’re exposed to guns
and violence,
and the mom is often ill’’ (SW2). Said another; ‘‘Clothing is an
issue. Kids may
go to school with middleclass kids with nice clothes and these
kids may have
hand-me-downs’’ (SW5). The effects of deprivation were
evident in a social
worker’s description of how children in one family were taken
to a restaurant
and how they, ‘‘Complained about the food not being quick
enough—the
kids always ate fast food and hadn’t made the connection
between food
preparation and dining. We took them back to the kitchen to
show them
how the food is cooked’’ (SW3).
All of the social workers spoke about poverty in relation to
housing
instability. In one case, ‘‘A child lived in a storage room at a
house of another
family. The shelter had holes in the floor and the family stole
from her’’
(SW9). For some families, ‘‘They don’t have anything except
donations. They
go from place to place, or they go to a shelter where kids aren’t
allowed’’
(SW4). A consensus opinion was that, ‘‘All clients live below
the poverty line’’

(SW2), and that poverty was a more pressing issue than
HIV=AIDS for vulner-
able families. Poverty even followed clients into death so that,
‘‘We have
helped to pay for the mom’s burial because the funeral home
threatened
to dump the body’’ (SW1).
STIGMA
HIV stigma was commonplace (‘‘the public isn’t educated about
HIV=AIDS’’),
and affected the children even if they were unaware of their
caregiver’s HIV
diagnosis. Again, the social workers all spoke about the myriad
problems of
HIV stigma which, in the case of children, meant trying to avoid
being singled
out at school or where they lived. One social worker referred to
the pervasive-
ness of stigma by stating that, ‘‘The stigma of HIV=AIDS is
one of the biggest
effects on kids. There’s still a lot of discrimination that impacts
the whole
family’’ (SW1). The effects of HIV stigma were twofold. First,
caregivers were
likely to withhold information about their diagnosis from
children, family, and
outsiders. In this case, the family was in danger of being
socially isolated
because, ‘‘Mom doesn’t want anyone to see her HIV medicine
or to know
why she’s fatigued or ill’’ (SW4). Nondisclosure about a child’s
diagnosis to
adult family members was potentially hazardous because, ‘‘If
the child goes

to stay with the grandparents, mom doesn’t send his medicines
along in case
they find out about his diagnosis’’ (SW7). HIV stigma
prevented seeking help
for behavioral or educational problems because: ‘‘Some of the
kids need to be
in counseling in the school system, but the parents are afraid
that system will
react negatively if they reveal their HIV status’’ (SW8).
Second, stigma could result in discrimination so that, ‘‘The
children
aren’t invited to play at someone’s home or for sleepovers’’
(SW11). Being
labeled HIV-infected and poor was doubly stigmatizing for
children because,
‘‘These kids can be identified as coming from AIDS housing’’
(SW6) and,
‘‘They are taunted at school because they’re poor or because
mom’s got
AIDS. The kids get into a lot of fights at school from being
labeled ‘those
AIDS kids’ ’’ (SW4). Being labeled ‘‘an AIDS kid’’ thus
occurred if children
were HIV-infected or if their primary caregiver’s HIV-infected
status was
known, but also if they lived in public housing that had
dedicated units
for people with HIV=AIDS.
MENTAL HEALTH

The struggle of being poor, ill, and stigmatized could leave
HIV-positive
women feeling overwhelmed. A total of eight social workers
specified mental
health issues for impoverished and overburdened mothers who
were strug-
gling with HIV=AIDS. A social worker at a busy urban clinic
stated that, ‘‘The
moms are all stressed out and depressed. They have low self-
esteem and
their kids are acting out and they are getting into trouble at
school’’ (SW3).
These children were at risk for learning and behavioral
problems, so that
‘‘Many of the kids get into trouble because they have learning
difficulties
or ADHD. Most of the kids are a grade or two behind at
school’’ (SW5). A
particularly poor outcome involved, ‘‘A mother who was
diagnosed with
bipolar disorder. Her kids were all put in different homes, all
different
schools, and are so out of control that she can’t take them
back’’ (SW2).
Maternal depression did not always mean that the children’s
needs were
neglected, however. Said one interviewee: ‘‘There are mothers
who are
depressed and who neglect their own needs, but they take better
care of their
kids than they do themselves’’ (SW6). This statement was
supported by a
rural social worker who observed that, ‘‘The children are a
bright spot in
the lives of clients, and the kids are well taken care of’’ (SW1).

PHYSICAL HEALTH
The burden of HIV-related illness could be considerable. Nine
social workers
spoke about the effects of physical illness on caregivers and
their children. For
example, if caregivers were symptomatic and could no longer
work, ‘‘The
parent’s status makes everyday issues twice as hard to deal with
and this really
affects the children. By the time most parents are approved for
social security,
they’re knocking at death’s door’’ (SW4). One social worker
remarked that,
‘‘The kids’ lives are dismal. They don’t get a lot of affirmation
when mom’s
ill and all stressed out’’ (SW7). Another social worker stated
that, ‘‘Some kids
have told me that they can’t focus in school because of their
mom’s illness’’
(SW 10). The progression of HIV-related illness for primary
caregivers could
also mean, ‘‘Being unable to care for the children or
themselves. Then the kids
are sent to live with someone else or they go into foster care’’
(SW6). The
trauma of having an acutely-ill caregiver was also reflected in
this statement,
‘‘In one case, the mom was taken away in an ambulance and I
guess they
thought she was having a heart attack. That’s the last time they

saw their
mom. The kids only talked to her one time before she passed
away’’ (SW3).
ORPHANHOOD
All except one social worker reported knowing about children
who had lost
one or both parents to HIV=AIDS. However, being orphaned by
HIV=AIDS
often occurred in a context of silence. Recalled one social
worker; ‘‘The
family doesn’t get involved until the caregiver is on their
deathbed. Then
all of a sudden the family assumes responsibility for the
children and the
child finds out for the first time what is wrong with their
parent’’ (SW7). This
anecdote from a social worker at a rural clinic was especially
poignant; ‘‘We
brought the AIDS quilt to the high school. Afterwards, the kids
wrote about
their thoughts. Fourteen kids wrote about losing a family
member to AIDS.
One child was crying as he wrote comments and said his father
had died
the previous week. None of the child’s teachers even knew’’
(SW6). In sum-
marizing the effects of trauma among at-risk and orphaned
children, this
social worker concluded that, ‘‘One hundred percent of the
children could
do with counseling. There’s a lot of issues around anger
management after
a parent’s death, or even if a parent is too ill to look after them
properly. They

need to be included in family assessments to make sure that
their mental
health, behavioral, school and other needs are being met’’
(SW6).
Table 1 summarizes the social workers’ comments about
mothers and
children in HIV-affected families for each of the five themes in
the qualitative
results.
Charts
MOTHERS WITH HIV=AIDS
Information provided by social workers in the qualitative
interviews was con-
firmed by descriptions in the chart review. Here, family
situations were char-
acterized by ill-health, poverty, housing instability and,
sometimes, by a
pervasive sense of hopelessness. Notations such as, ‘‘has crying
spells,’’ ‘‘uti-
lities disconnected,’’ ‘‘has warrants for arrest for unpaid traffic
fines,’’ ‘‘has not
disclosed diagnosis to anyone,’’ ‘‘boyfriend uses client’s money
for drugs,’’
‘‘father of baby is abusive,’’ and ‘‘client needs safe housing’’
indicated the
often stressful, violent, and impoverished circumstances of
HIV-affected
families. Further, follow-up assessments indicated that
circumstances might
not improve between visits, with hopeful statements such as ‘‘is
working

toward better life for self and children’’ turning into, ‘‘client
feels completely
overwhelmed. She has stopped taking meds because they make
her feel ill,’’
and ‘‘Overwhelmed at this time. Husband wants her to leave
with her son,
but not his three biological daughters. She said he monitors her
calls and
comings and goings and will not let her leave. She has stopped
Rx for bipolar
disorder; doesn’t take meds for HIV.’’ In the best case scenario,
mothers who
were living with HIV=AIDS took prescribed medications, kept
appointments
at the clinic, and had steady employment, family situations,
and=or edu-
cational goals. In other cases, fatalism (‘‘I put my trust in
God’’), mental
illness, addiction, or adverse life events led to nonadherence to
HIV regimens
and to family disintegration as marked by notations such as
‘‘[name of child]
placed into DHR foster care.’’
LIVING SITUATIONS
Two factors were particularly noteworthy in terms of residence
for children
who were living with HIV=AIDS or who were affected by
HIV=AIDS. First,
families were often dispersed in terms of caregivers and
geographic location.

TABLE 1 Summary of Qualitative Responses by Theme for
Mothers and Children in Families
Affected by HIV=AIDS
Theme Sub-theme Impact on children’s lives
1. Poverty
Housing ‘‘The kids are in bad housing.’’ ‘‘They’re in places
where there is a lot of shooting.’’
Transience ‘‘They get housing but can’t maintain it, especially
when they’re poor or there’s domestic violence.’’
2. Stigma
HIVþ Children ‘‘They don’t want to be labeled as different so
they
have compliance issues.’’
HIV� Children ‘‘These kids get into fights because other kids
pick on
them. They get called ‘‘those AIDS kids.’’
3. Mental Health
Mothers ‘‘Most moms have low self-esteem. There’s
depression, anxiety, and post-traumatic distress.’’
Children ‘‘They have low self-esteem, act out, and get into
trouble at school.’’
4. Physical Health
Mothers ‘‘The moms get to a point where they can’t care for
children or themselves.’’

Children (HIV-infected): ‘‘Most don’t look much different from
other kids except being smaller in size.’’
(HIV-affected): ‘‘Most kids are in pretty good physical
health but they don’t get evaluated.’’
5. Orphans
Grief ‘‘They find out what is wrong after their parent has
died. They all need counseling.’’
Care ‘‘They end up with grandparents who have health
problems of their own.’’
This relocation occurred for 15 children and adolescents whose
mothers had
died of HIV=AIDS. Three of these minor dependents had gone
to live with
their fathers, while the other 12 children were living with other
relatives or
were in foster care. Second, the 66 children with living parents
did not always
reside with them. For example, less than one third of these
children (27%)
lived with one or both biological parents and most were their
mothers. In
these kin units, dependent minors tended to be preschoolers
rather than
school-aged children, (e.g., the 19 infants all lived with their
biological
mothers). Nine of the children with living parents (14%) were
residing with

extended family members such as grandparents or aunts, while
six children
(9%) were in foster care or had been adopted. Life transitions
provided a
partial explanation for relocation in the case of adolescents. For
example,
a total of 22 adolescents (33%) were living independently.
These children
were described as female adolescents who were pregnant or had
recently
given birth. This subgroup generally formed their own family
units after mov-
ing to public housing, usually in single-parent households, or,
in a few cases,
with an intimate partner. The remaining 17% of children in this
category
were lost to contact.
The living arrangements of children with HIV=AIDS in relation
to their
biological siblings are described in Figure 1. This subsample of
46 dependent
children includes the 19 infants who were categorized as
primary clients but
excludes the 22 adolescent mothers described above. The
biological families
of these children consisted of one caregiver and between 2 to 10
siblings,
with a mean size of 3.2 children per family unit. Most of the
children and
FIGURE 1 Infants, children, and adolescents with HIV=AIDS:
residence in relation to their
siblings. This category excludes 22 adolescent mothers who
lived independently. The mean
age of the children with HIV=AIDS was 12.2 years. The ages of

siblings were not always
recorded, especially if they did not reside with the client.
infants (85%) in these families had biological siblings, and most
of these
siblings were not living with HIV=AIDS. Almost two-thirds of
the infants=
children with HIV=AIDS (62%) had siblings who did not live
with them,
either because they were older and had moved away or, more
commonly,
because of family dislocation following domestic violence or
divorce, termin-
ation of parental rights (e.g., after a mother’s incarceration) or
maternal
illness. In these cases, the siblings were being raised by other
relatives, often
in another state, or they were in foster care or their whereabouts
were
unknown. As noted, the siblings who did not live with
biological parents
tended to be older than those children who did. These older
children were
usually from prior relationships while children in residence
were part of
‘‘second’’ families for women with HIV=AIDS who attended
the clinic.
MENTAL HEALTH AND COPING
Information on primary clients’ mental health and related
conditions was

described in their charts. Children and adolescents with
HIV=AIDS were
psychologically assessed by a pediatric and adolescent
psychologist at the
Children’s Hospital of Birmingham Complex on a periodic
basis. For adults
with HIV=AIDS, either a mental health professional at the study
clinic or prior
medical records were used for identification of mental health
conditions. By
these measures, two-thirds of adults (66.6%) and almost three-
fourths of ado-
lescents (70.3%) had at least one identified condition, with 18
of these clients
reporting multiple conditions. Both adolescents and adults who
were living
with HIV=AIDS commonly experienced depression and suicidal
ideation,
and 16 clients were also victims of domestic violence. Learning
disabilities
and conduct disorders were recorded for almost one third of the
school-aged
children (32.0%). These deficits often impaired children’s
ability to get along
at school and sometimes led to school suspensions and
involvement with the
criminal justice system as indicated in notations such as
‘‘teachers get on her
nerves, currently in jail,’’ and ‘‘limited reading and language
skills, no longer
at school, gang activity, arrested for assault.’’ As a side note,
mental health
and behavior appeared to improve for children with HIV=AIDS
who went
to live with other relatives in more stable environments,
especially in the case

of three children whose new families enjoyed a higher standard
of living.
Table 2 describes the psychosocial characteristics of primary
clients in
the sample. Comparative information for the children and
adolescents who
were affected by HIV=AIDS was partial or incomplete and is
not presented
here. Domestic violence is included for this sample of adults,
adolescents,
children, and infants if violence was present in the household
(e.g., between
mother and boyfriend or between mother and grandparent).
These data were
included because mothers who were abused by an intimate
partner or family
member also reported being depressed and because the abuse
had a major
impact on all aspects of family life including adherence to
treatment, financial
and housing stability, child behavior, school performance, and
adverse
effects on children. Mental health conditions and developmental
delays are
listed as they appeared in the clinic charts under the category of
‘‘Mental
Health History.’’
Not surprisingly, depression was a common complaint among
the adults

and adolescents. Chart entries indicated that depressed
caregivers neglected to
take HIV medicines on a regular basis, or to administer
children’s HIV
medicines, and to provide meals and general supervision for
children.
Nonadherence was measured by viral loads during clinic visits
and by staff
notations on reassessment forms. Entries included, ‘‘Mom is
tired and forgetful,
quit job, has not been consistent with medical care for son,’’
and ‘‘History of
depression; there have been concerns about medication
adherence for her
infant [and] she is even less adherent with her own personal
care.’’ Similar pro-
blems were recorded for depressed adolescents so that, ‘‘Client
refuses to take
meds; adherence is being encouraged,’’ and, ‘‘Says he doesn’t
care about HIV;
seemed bored; misses medical appointments.’’ In one notable
case, a fatalistic
stance toward HIV=AIDS was expressed as ‘‘family opposes
HIV medicines.’’
Follow-up assessments at the clinic indicated that the health of
depressed
caregivers and adolescents with HIV=AIDS tended to
deteriorate, leading to
hospitalizations and, in some cases, children being sent to live
with relatives
or being placed into foster care as a temporary or permanent
measure.
Information for mental health and coping was also available for
the
functioning of a subsample of 28 mothers with HIV=AIDS and

their children
in residence (Figure 2). This subsample included the 22
adolescent mothers
mentioned above who were living independently. In these
families, the
TABLE 2 Identified Mental Health and Other Conditions for
Primary Clients by Age Category
(N ¼ 80)
Age category
No. of
clients % Identified
a
Type of condition (by frequency)
b
1) Adults (>25) 12 66.6% Depression (6), Domestic Violence
(4),
Addiction (2), Schizophrenia (1) Suicide
Attempt (1)
2) Adolescents (13–24) 37 70.3% Depression (9),
Behavioral=Jail (9),
Domestic Violence (8), Suicide Ideation
(6), Learning Disabilities (5), Bipolar
Disorder (4), Sexual Abuse=Rape (3),
Addiction (2), Anxiety Disorder (2),
Self-Mutilation (1)
3) Childrenc (0–12) 31 25.8% Domestic Violence (4),
Developmental (2)
ADHD (2), Depression (1), Behavioral (1)

a
This column refers to the percentage of clients in each age
group with one or more identified conditions.
b
Includes multiple conditions for 5 adults and 15 adolescents as
identified by a mental health professional.
Domestic violence refers to incidents that occurred in the
caregiver’s residence.
cDomestic violence refers to violent episodes involving mothers
and their relatives or intimate partners.
children affected by HIV=AIDS outnumbered the children who
were living
with HIV=AIDS by almost 3:1. A total of 22 (79%) of the
mothers had mental
health conditions that adversely affected personal functioning.
Most of these
caregivers reported being depressed (70%), although anxiety,
bipolar dis-
order, addiction, and schizophrenia were also reported. Thirteen
women
(46%) reported being abused by nonresident intimate partners
(or, occasion-
ally, their mother), although their lifetime experience of
domestic and sexual
violence was much higher. More than one-third of the children
who were
living with HIV=AIDS (35%) were identified as being
depressed or troubled,
with criminal justice involvement and school suspensions being

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