AIDS Education and Prevention, 18(3), 243–258, 2006
© 2006 The Guilford Press
HERGENRATHER, RHODES,
EMPLOYMENT-SEEKING
BEHAVIORS
AND CLARK
OF PLWHA
WINDOWS TO WORK:
EXPLORING EMPLOYMENT–SEEKING
BEHAVIORS OF PERSONS WITH
HIV/AIDS THROUGH PHOTOVOICE
Kenneth C. Hergenrather, Scott D. Rhodes, and Glenn Clark
The advent of health–enhancing protease inhibitors and highly active
antiretroviral therapy has enhanced the longevity for persons living with
HIV/AIDS (PLWHA), increasing the number of PLWHA returning to employment. Based on community–based participatory research, the Photovoice
method was used to identify the influences upon the employment–seeking behavior of 11 PLWHA who were unemployed and had full-time employment histories after their initial HIV/AIDS diagnosis. Through group discussion and
photograph presentations, participants identified 19 factors which they grouped
into five categories: (a) advantages of employment, (b) disadvantages of employment, (c) referents influencing employment decisions, (d) facilitators for employment, and (e) impediments to employment. Participants utilized these findings to
develop action plans to address the employment–seeking behavior of PLWHA.
The findings also suggest the utility of Photovoice to enhance employment
outcomes for PLWHA.
With the advent of health–enhancing protease inhibitors and highly active
antiretroviral therapy (HAART) in 1995, the longevity of persons diagnosed with
AIDS has been enhanced. Between 1990 and 2003, the number of persons living with
HIV/AIDS (PLWHA) in the United States has increased 519.1%, and the annual number of AIDS–related deaths in the United States decreased approximately 75.2%.
Since the initial AIDS case in June 1981, approximately 97.2% of the 929,985 cumu-
Kenneth C. Hergenrather is with the Department of Counseling/Human and Organizational Studies, Center for Rehabilitation Counseling Research and Education, Graduate School of Education and Human Development, George Washington University, Washington, DC. Scott D. Rhodes is with the Department of
Social Sciences and Health Policy, Division of Public Health Sciences, Wake Forest University School of
Medicine, Winston–Salem, NC. Glenn Clark is with the Director of Behavioral, Health, and Social Services,
Whitman–Walker Clinic, Inc., Washington, DC.
The authors thank the participants for sharing their lives through the window of the camera lens. They also
recognize the Whitman–Walker Clinic for its continued support of research addressing the needs of
PLWHA. This study was funded by the George Washington University, Graduate School of Education and
Human Development and the Whitman–Walker Clinic. Human subject review and oversight were provided by the institutional review boards of George Washington University and the Whitman Walker Clinic.
Address correspondence to Kenneth C. Hergenrather, PhD, MSEd, MRC, CRC, Department of Counseling/Human and Organizational Studies, Center for Rehabilitation Counseling Research and Education,
Graduate School of Education and Human Development, George Washington University, 2134 G St. NW.,
Rm. 318, Washington, DC 20037; e-mail: hergenkc@gwu.edu
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lative number of persons diagnosed with AIDS in the United States were between the
working ages of 24 to 64 years (Centers for Disease Control and Prevention [CDC]
2003, 2004; Karon, Fleming, Steketee, & DeCock, 2001; National Center for Health
Statistics, 2002; Vittinghoff et al., 1999). With the increased longevity of persons living with AIDS and the advent of HAART, the number of PLWHA seeking employment has increased (Brooks & Klosinski, 1999; Glenn, Ford, Moore, & Hollar, 2003;
Hergenrather, Rhodes, & Clark, 2004, 2005; Hergenrather, Rhodes, & McDaniel,
2005; Kalichman et al., 2000; McReynolds, 2001).
Under the Americans With Disabilities Act of 1990 (ADA), PLWHA meeting defined disability criteria are provided specific services as an individual living with a disability, including the provision of employment services through public vocational
rehabilitation services (ADA, 1990, 3; McCarthy, 1998). With increased longevity for
PLWHA and disability status for PLWHA, the increase in the number of PLWHA seeking employment has grown and will no doubt continue to grow. Successful employment
may be enhanced by understanding the salient beliefs of PLWHA toward employment.
PURPOSE
The purpose of this study was to apply Photovoice, a method of inquiry associated
with community–based participatory research (CBPR), to identify and explore potential influences on employment–seeking behavior of PLWHA. The study has potential
to identify the value of employment as a viable service outcome goal by community–based AIDS organizations and public agencies serving PLWHA, leading to successful employment for PLWHA and positively affecting one’s HIV prognosis.
Among PLWHA, employment has been correlated with improved functional status
and quality of life, and a measure of monitoring HIV prognosis. It has been reported
as a significant to successfully living throughout one HIV prognosis and important to
their emotional well–being (Gecas, 1989; McReynolds, 2001; National Cancer
Institute, 1998; Swindells et al., 1999; Timmons & Fesko, 1997).
PHOTOVOICE
Photovoice is an innovative CBPR method of inquiry based upon Paulo Freire’s approach to education for critical consciousness, feminist theory, and a community–based approach to documentary photography (Merriam & Caffarella, 1999;
Strack, Magill, & McDonagh, 2004; Wang & Burris, 1994, 1997; Wang, Yi, Tao, &
Carovano, 1998). It is a qualitative research methodology in which participants photograph potential variables of concern and participate in group discussions regarding
the photographs taken, which empower participants to reflect on personal and community strengths, create critical dialogue, share knowledge about personal and community issues, and provide a forum for the presentation of participant’s lives through
self–identified images, language, and context (Streng, Rhodes, Ayala, Eng, Arceo, &
Phipps, 2004; Wang, Morrel–Samuels, Hutchison, Bell, & Pestronk, 2004). Explicit
in Photovoice is group interaction, through which participants are encouraged to discuss identified variables, respond to each other, ask questions, comment on each
other’s perspective, and exchange anecdotes. This methodology can identify pertinent
variables and nuances that researchers may not otherwise be able to identify (Rhodes
& Hergenrather, 2002).
Photovoice expands the representation and diversity of participant voices to assist in defining and improving the social and political realities of the identified issues. It
EMPLOYMENT-SEEKING BEHAVIORS OF PLWHA
245
accommodates a variety of physical and developmental disabilities because it does not
require participants to be able to read or write. Photovoice has been employed to explore social issues impacting culturally diverse groups, which include communities of
Latino adolescents in rural North Carolina; Chinese women in the Yunnan Province,
China; homeless people in Michigan; mothers with learning disabilities in the United
Kingdom, and intergenerational African American women in the United States (Booth
& Booth, 2003; Clark & Zimmer, 2001; Lykes, Blance, & Hamber, 2003; Streng et
al., 2004; Wang & Pies, 2003).
WINDOWS TO WORK
This study, known as Windows to Work, was a community–university CBPR study to
explore self–identified variables potentially impacting employment–seeking behavior
of PLWHA, who were unemployed, had fulltime employment histories, desired to return to work, and were recipients of Whitman–Walker Clinic (WWC) services. The
study was the third study within a strengthening community–university partnership
between the WWC of Washington, DC, and George Washington University
(Hergenrather et al., 2004, 2005). Annually, the WWC provides HIV/AIDS services to
more than 6,000 underserved and underinsured persons in the DC metropolitan area.
Photovoice was selected for this study because the methodology provides the opportunity to more fully investigate participants’ responses and reactions to potential
variables related to employment and allows new areas of inquiry to emerge. The study
objectives were to engage participants to (a) identify influences upon their employment–seeking behavior, both positively and negatively; (b) promote critical dialogue
and acknowledge issues through group discussion of photographs and statements; (c)
synthesize study findings to conceptualize an action plan for seeking employment, impacting individual change and community, and (d) identify influential advocates, to
whom study findings were to be disseminated. To standardize training, the
Photovoice Moderator’s Guide (PMG) was developed to introduce methodology and
outline both the group processes and discussion format (Streng et al., 2004). The
PMG contained participant recruitment guidelines, camera use training, facilitation
skills for the group brainstorming to identify photo assignments, discussion protocol,
creation of action plans, and identification of groups for which to present study
findings.
METHODS
SETTING AND PARTICIPANTS
In October 2004, researchers who were experienced in HIV/AIDS research,
CBPR, and Photovoice; representatives from the WWC management team; and
PLWHA met to develop and plan the study. Through the meetings a partnership based
upon CBPR principles was established, research issues were clarified, the urban clinic
was selected for the study site, and the participant recruitment strategy was agreed
upon. All members were perceived as equal partners. The partnership agreed that the
study would explore the influences upon the employment–seeking behavior of
PLWHA, apply a CBPR process utilizing Photovoice methodology over nine consecutive weekly 2–hour sessions, and be conducted at WWC. Participants were recipients
of WWC HIV/AIDS services, unemployed, had fulltime employment histories while
diagnosed with HIV/AIDS, and recruited through flyer postings at the WWC.
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DATA COLLECTION
To enhance continuity, the first author facilitated each Photovoice session according to the PMG. At the first session, participants were provided an overview of the
study, an informed consent, and completed a short questionnaire collecting data on demographics and employment–seeking behavior. Each participant received a digital
camera, carrying case, and $10 compensation per session. Training on digital camera
use (e.g., taking photographs, flash use, focusing subjects, deleting photographs, etc.)
was provided. Because participant comments made during photo discussions are analyzed much like other forms of qualitative data (e.g., focus group), all sessions were
audiotaped. Based on their personal experience, participants engaged in a brainstorming discussion to determine their photo assignments, and to guide their taking of photographs and discussion of photographs in subsequent sessions. Through group
consensus, the six photo assignments were as follows: (a) When you think about the
word employment, what comes to mind? (b) Are there advantages to employment? (c) If
you became employed, would there be disadvantages? (d) Persons or groups of people
influencing your decision to become employed; (e) What would help you return to employment? and (f) What would stop you from becoming employed? Two subsequent
sessions addressed the creation of an action plan and identifying influential advocates.
The first photo assignment was to define the word employment.
Commencing with Session 2, participants arrived 30 minutes early to have photo
assignments downloaded and printed for the session. The PMG session protocol had
five components: (a) a review of the prior session, (b) an application of SHOWED for
the photo assignment discussion, during which participants had the option of sharing,
or not sharing, one or two photographs; (c) group consensus of identified influences,
and selection of one corresponding photograph and quotation for each influence; (d) a
discussion of the next photo assignment; and (e) a session summary, including an
overview of the next session and reminder sheet of information on the next session
(e.g., date, time, transportation, photo assignment).
DATA ANALYSIS
After each session, transcripts, facilitator notes, influences with corresponding
photographs, and quotations were reviewed for analysis consisting of detailed reading
and rereadings. The data analysis involved a subgroup of members from the WWC
and George Washington University partnership. Participant responses and text lines
were tracked throughout transcripts and analyses. Much effort was placed into systematizing the data through content analysis. To address reliability, the authors measured interrater reliability (Sim & Wright, 2000). After independent organizing of
transcripts into broad conceptual categories, the subgroup shared influences and interpreted individual statements according to standard procedures (Morgan, 1998;
Rhodes & Hergenrather, 2002; Streng et al., 2004). Cohen’s Kappa was reported as
.85, suggesting satisfactory interrater reliability (Blackman & Koval, 2000). Quotations, extracted from transcriptions and facilitator notes, and photographs were used
to illustrate influences; which were presented at the next session for clarification,
consensus, and validation.
RESULTS
PARTICIPANTS
Eleven PLWHA participated in the study. Participants had a mean of 13.6 years
(SD 7.1; range = 5–23) since initial HIV/AIDS diagnosis; six (54.5%) had AIDS, seven
EMPLOYMENT-SEEKING BEHAVIORS OF PLWHA
247
FIGURE 1. Employment empowers one to provide for self and others.
“Employment for me is the tree in the photo. It is autumn and the tree is becoming dormant.
In the spring, with the sun, it will grow, reach out its branches, and provide shade and a
place for the birds to nest. I am that tree. With employment I will grow, develop my skills,
and provide for myself and my family.”
(63.6%) received public assistance (e.g., Social Security Disability Income [SSDI],
Supplemental Security Income [SSI]), and all had full-time employment histories in
professions in which job duties would not place coworkers at risk for HIV infection.
Participant mean age was 46.6 years (SD = 7.9); eight (72.7%) were male; nine
(81.8%) were African American; eight (72.7%) completed one or more years of college; and only 1 reported using any assistance, the Internet, to find a job.
DEFINING EMPLOYMENT
Participants defined employment as a four–component term. The first component addressed employment as empowering one to provide for self and others. This
was represented in a photograph of a tree silhouetted by the sun. A participant shared,
“Employment for me is the tree in the photo. It is autumn and the tree is becoming dormant. In the spring, with the sun, it will grow, reach out its branches, and provide
shade and a place for the birds to nest. I am that tree. With employment, I will grow,
develop my skills, and provide for myself and my family” (Figure 1).
The second component presented employment as increasing one’s work skills
and abilities for career advancement. This was represented by a photograph of a
one–way traffic sign adjacent to a mail truck and a police car on a street and the statement, “If we became employed, we are off the ‘one–way street’ of unemployment. We
get the training and skills needed to work, to become a mail carrier or a police officer,
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TABLE 1. Categories and Factors
Advantages of employment
Enables financial responsibility
Enables one to provide for self and others
Increases my social skills
Increases self–esteem
Disadvantages of employment
Assimilation into workplaces that are unfriendly to PLWHA
Noncompliance with prescribed medical treatment
Loss of community–based HIV/AIDS services
Facilitators for employment
Motivation
Job–training
Job–seeking skills
Transportation costs
Work clothing
Impediments to employment
Inability to adhere to prescribed medical treatment
Lack of workplace accommodations
Loss of Medicare
Lack of HIV/AIDS education in the workplace
and give back to our community.” Third, participants agreed that employment empowers a sense of pride in one’s life, giving them a fresh perspective to living. This was
represented with a photo of bright yellow chrysanthemums in bloom and the statement, “When I had employment, each day was a fresh start. I woke with a purpose and
a reason, looking forward to the new day just as a flower blooms with the morning
sun.”
Fourth, participants believed that employment provides them with the skills to
make well–informed decisions. This was represented by a photograph of a stop sign at
a street intersection in front of a cemetery and the statement “Every road traveled has
a stopping point where you have to make a decision. With employment, we are on
life’s road with renewed purpose and sense of self, making informed decisions leading
us away from cemeteries of despair.” Employment was defined as a societal expectation that rejuvenates self–worth and pride, increasing one’s skills, abilities, and confidence. Participants identified 19 influences as factors impacting employment, which
they grouped in five categories reflecting photo assignments for Sessions 2 through 7:
advantages of employment, disadvantages of employment, referents influencing my
employment decision, facilitators for employment, and impediments to employment
(Table 1).
ADVANTAGES OF EMPLOYMENT
Four advantages of employment were identified. First, employment enables financial responsibility. This was represented by a photograph of a stack of bills on a table and the statement “I want to come home from work, and once again pay my bills
and take care of myself without government assistance.” Second, employment enables
one to provide for self and others, independent of government assistance. This was
represented by a photograph of a shop–lined city street and the statement “Employment would allow me to walk into shops and buy things with money I earned. I’d feel
good about myself.” Third, employment increases social skills. This was represented
by a photograph of a telephone and the statement “The telephone connects us other
people in the workplace and outside of the workplace. Communication is the key of
EMPLOYMENT-SEEKING BEHAVIORS OF PLWHA
249
life.” Fourth, employment increases self–esteem, enabling accomplishments. This was
represented in photograph of a house on which a mast with a U.S. flag is mounted and
the statement “With a job I’d have the self–esteem to pursue the American dream of
buying a house, providing security for me and my family, and get a feeling of
accomplishment.”
DISADVANTAGES OF EMPLOYMENT
Three disadvantages to employment were identified. First, participants perceived
they would be assimilated into workplaces that are unfriendly to PLWHA. This was
represented with a photograph of a townhouse, obscured by gruesome Halloween
decorations and the statement “Work should be a welcoming place. When coworkers
find out you have HIV/AIDS, you’re an outcast. It’s scary, like the photo. I’m sure
some people are ignorant about how you can get the HIV and others would say hurtful
things to be mean.” Second, participants concurred that employment would lead to
noncompliance with prescribed medical treatment. This was represented by a photograph of four prescription bottles casting shadows on a wall and the statement “Compliance with meds is a priority. What good is a job if meds become figments because
you get so caught up doing a good job that you forget to take them and then get sick?”
The third identified a loss of community–based HIV/AIDS services. This was represented by a photograph of a red traffic light at a street intersection on which one of the
three townhouses is abandoned and the statement “When we get a job, community–based HIV/AIDS services stop like the red light stops traffic. We become the
abandoned house in the photo.”
REFERENTS INFLUENCING EMPLOYMENT DECISIONS
Participants identified three influential referents. First, the infectious disease physician was most influential. Participants presented this by a photograph of pharmacy
shelves stocked with prescription drugs and the statement “With this disease, there are
so many more meds than there were 11 years ago. The medications you and your infectious disease physician decide upon prolong your life. If my infectious disease physician gives me his blessing to work, then I’ll try” (Figure 2).
Second, family, biological or self–identified, was influential in their decision to
become employed. This was represented by a photograph of a sculpture of two adults
seated together holding an infant and the statement “What my family has to say about
employment matters. It is very important to me that I discuss my thoughts and feelings
about it with them.” The third referent was friends. This was depicted in a photograph
of two grasped hands and the statement, “The friendships I have maintained in my 24
years of living with AIDS are so important. I pray that I can continue these relationships which help me get through life on a daily basis, despite the obstacles of my
prognosis.”
FACILITATORS FOR EMPLOYMENT
Participants identified five potential facilitators to employment. First, participants identified motivation as the stimulus for seeking employment. This was represented by a photograph of pay stub and the statement “If I thought I could find a job
that pays well, coworkers were okay with AIDS, and I had support, then I have no
doubt that I’d be motivated to seek employment.” The second identified the need for
job skills. This was represented by a photograph of a computer and the statement
“Technology is passing me by. I need training and education. This is vital for me to return to work.” A third was job–seeking skills (e.g., creating a résumé, interview skills,
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FIGURE 2. Infectious disease physician.
“With this disease, there are so many more meds than there were 11 years ago. The medications you and your infectious disease physician decide upon prolong your life. If my infectious disease physician gives me his blessing to work, then I’ll try.”
job searches). The group represented this by a photograph of a résumé and the statement “I’m not proud of my job–seeking skills. I don’t know how to write a résumé, interview, or know where to look for jobs. If I knew where to get help, I’d get it.” The
fourth was transportation costs. Participants identified their need for money to cover
transportation costs involved with traveling to and from work prior to receiving the
first paycheck. The group represented this by a photo of fare cards and tokens for train
and bus travel and the statement “Once I get a job I know I’ll get paid and be able to
pay to ride the bus and train, but before that first paycheck I’ll need money to get to
and from work.” The fifth was identified as having appropriate work clothing. The
participants represented this with a photograph of a suit and a work shirt with a name
patch and the statement “Whether I need a uniform, a dress shirt, or a suit, I’ll need to
conform to the dress code for my job to make me feel part of the work team.”
IMPEDIMENTS TO EMPLOYMENT
Participants identified four impediments to employment. The first impediment to
work that participants identified was the inability to adhere to prescribed medical
treatment in a workplace setting. This was represented by a photograph of 7–day pill
box containing 28 compartments, of which half are open and contain six to seven pills
and the statement “To adhere with my meds, I’d have to take my meds to work and
take 13 pills during the work day. Coworkers are going to question why I’m taking
EMPLOYMENT-SEEKING BEHAVIORS OF PLWHA
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FIGURE 3. Adherence to prescribed medical treatment.
“To adhere with my meds, I’d have to take my meds to work and take 13 pills during the
work day. Coworkers are going to question why I’m taking meds and won’t want to work
with me if they think something’s wrong. It’s happened before.”
meds and won’t want to work with me if they think something’s wrong. It’s happened
before” (Figure 3). The second impediment was the potential lack of workplace accommodations. The participants represented this by a photograph of a hospital room
containing a bed and wheel chair and the statement, “With HIV, there may be times
when I lack mobility and need a wheel chair. If I’m eligible for ADA accommodations,
I need to know how to ask for them. If I don’t, I won’t be in the picture.” The third impediment to becoming employed was the perceived loss of Medicare. This impediment
was represented by a photograph of a Medicare card and the statement “If I didn’t
have Medicare, I’d be in the poor house!” The fourth impediment was the lack of
HIV/AIDS education in the workplace and thus the potential for feeling stigmatized
and discriminated against. This was represented by photograph of HIV/AIDS workplace training guides and the statement “The workplace needs HIV/AIDS education.
This must be provided so persons with AIDS now, or in the future, never feel the threat
of job loss based solely on their HIV/AIDS.”
PARTICIPANT ACTION PLAN AND INFLUENTIAL ADVOCATES
Participants developed a personal action plan based upon the identified categories. The plan, the employment decision–making model (Figure 4), would assist them
and other unemployed PLWHA, when seeking–employment. In the model, the first
employment component identifies PLWHA employment status as unemployed. When
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unemployed, a PLWHA who has been employed, but is currently unemployed, is
likely to contemplate seeking employment. The PLWHA decides if he or she is interested in seeking employment. If not, the PLWHA remains unemployed. If interested,
the PLWHA identifies the advantages (e.g., financial responsibility, provide for myself, increased self–esteem) and disadvantages (e.g., noncompliance with meds, loss of
community–based services) of employment. The PLWHA then identifies referents
(e.g., infectious disease physician, family) influential in the employment–seeking decision of the PLWHA. The PLWHA discusses the advantages and disadvantages of employment with referents. If referents are not supportive, the PLWHA remains
unemployed. When supportive, referents are utilized as a support system throughout
the model. The PLWHA then identifies facilitators (e.g., job training, work clothing)
for, and impediments (e.g., loss of Medicare, lack of workplace accommodations) to,
employment. The ability of a PLWHA to access identified facilitators is assessed. If facilitators are not accessible, they become impediments. PLWHA then identify resources to manage impediments (e.g., ADA, Social Security Administration [SSA],
employment service programs). If resources to manage the impediments cannot be
identified and accessed by the PLWHA or with the support of referents, the PLWHA
remains unemployed. If resources to manage impediments are identified and accessible, the PLWHA identifies local nonprofit/public employment service
agencies/programs and applies for services. If not eligible for services, the PLWHA
remains unemployed. If eligible, the PLWHA utilizes employment service agencies
and programs.
Based upon consensus, participants identified five influential advocates to whom
the study findings should be disseminated as: SSA, U.S. Department of Labor, American Medical Association, Rehabilitation Services Administration, and HIV/AIDS
community–based organizations. Study findings were presented via meetings and
conferences.
DISCUSSION
Through CBPR, Photovoice methodology was applied to empower participants to explore influences upon employment–seeking behavior. Several study findings deserve
highlighting and exploration. Employment was perceived as a valued societal expectation, but it was confounded with multiple challenges. The study findings suggest
that unemployed PLWHA, with fulltime work histories, contemplate employment.
PLWHA were aware of employment outcomes (e.g., financial responsibility, providing for self and others, social skills, self–esteem) and facilitators needed to become employed (e.g., job–training, job–seeking skills). Although they acknowledge the
benefits of public assistance (e.g., SSI, SSDI), PLWHA desired to become self–sufficient. Among PLWHA, becoming self–sufficient has been associated with employment and adult status (Sankar & Luborsky, 2003). When behavior has value, a person
is likely to hold a favorable attitude toward performing the behavior (Ajzen, 1985,
2001; Conner & Sparks, 1999).
Participants acknowledged that their decision to seek employment was contingent upon the influence of important referents. The infectious disease physician was
reported as most influential based upon his or her power in prescribing appropriate
medical treatment for PLWHA to sustain life. There is much research on the role of the
physician influencing patient behavior. Physicians who exhibit specific behaviors
(e.g., attentiveness, respect for patient autonomy, unconditional positive regard) have
been identified as influential upon patient compliance with prescribed medical treat-
EMPLOYMENT-SEEKING BEHAVIORS OF PLWHA
FIGURE 4. Employment decision-making model for PLWHA.
Note. ADA = American With Disabilities Act of 1990; TTWSP = Ticket to Work and
Self-Sufficiency Program.
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HERGENRATHER, RHODES, AND CLARK
ment (DiMatteo, Sherbourne, & Hays, 1993; Hergenrather et al., 2004, 2005;
Mueller, 2004). Further research should explore the frequency of the infectious disease physician in HIV/AIDS services and influence upon employment
seeking–behavior of PLWHA.
Through the employment categories of Disadvantages to Employment and Impediments to Employment, participant–identified factors reinforced the issues of
“coworker HIV/AIDS knowledge” and “accommodation of HIV-positive prognosis”
upon their employment–seeking behavior. Participants perceived several challenges in
the workplace. Perceptions, whether based in fact or hearsay, become a person’s reality. First, participants believed employment assimilates them into workplaces where
coworker acceptance is contingent upon undisclosed HIV status. When HIV status
was disclosed, participants experienced discrimination from coworkers, resulting in
unemployment. Second, participants stated that when HIV status was disclosed, participants had experienced discrimination from coworkers not well educated on
HIV/AIDS, resulting in their unemployment. When HIV status becomes known in the
workplace, it is likely that social distance develops between PLWHA and coworkers
owing to fear of contagion, workplace peer support systems deteriorate, and PLWHA
lose their jobs. Participants stated that HIV/AIDS education in the workplace is only
effective when supported by management. The lack of workplaces accepting of
PLWHA has been identified as a barrier for PLWHA seeking employment (Brooks &
Klosinski, 1999; Hergenrather et al., 2004; Slack, 2002).
Second, participants identified employment contingent upon accommodating
one’s HIV-positive prognosis through SSA benefits. Seven participants received SSA
benefits (e.g., SSI, SSDI); others perceived they were quite likely to enrollment in SSA
owing to their HIV prognosis. In group discussions, only one participant was familiar
with the extension of SSA benefits through the Ticket to Work and Self–Sufficiency
Program (TTWSP). PLWHA report limited knowledge of the TTWSP (Hergenrather
et al., 2005). Through SSA, TTWSP recipients are provided a paper ticket to obtain
employment services and are eligible for a 9–month trial work period, which does not
affect benefits. If a person remains on disability status while employed, Medicare may
continue for 39 months and beyond (National Archives and Records Administration,
2001; Silverstein, 2002). One participant stated, “I received the ticket in the mail but
didn’t know what it was. Being in this group helped me know what it was. I met with
Social Security. Now I’m looking at employment services” (Figure 5). More than 70%
of participants receiving SSA enrolled in the TTWSP during the study.
Although participants acknowledged the ADA, participants did not understand
the ADA as applicable to PLWHA. Participants acknowledged the likelihood of and
anticipated need for workplace accommodations but believed employment would be
in jeopardy if accommodations were requested. Through discussion, participants understood that a PLWHA meeting ADA criteria as a person with a disability has specific rights, including protection from discrimination in areas of employment which
include the application process, hiring, discharge, requesting accommodations, advancement, and training (ADA, 1990, §3). When impediments to performing a behavior are perceived as insurmountable, persons are less likely to perform the behavior
(Conner & Sparks, 1999).
This study developed the employment decision–making model, identifying a plan
of action for personal and community change. The model identified employment
components to reinforce the participant–identified categories in addressing the complex social, structural, and physical factors impacting behavior change from unem-
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255
FIGURE 5. Ticket to Work and Self-Sufficiency program.
“I received the ticket in the mail but didn’t know what it was. Being in this group helped me
know what it was. I met with Social Security. Now I’m looking at employment services.”
ployment status to employment status. Participants identified the utility of the model
as an empowerment tool for PLWHA, and as a community action plan for PLWHA
service providers, to identify and explore the salient beliefs of unemployed PLWHA
seeking employment and explore federal legislation (e.g., ADA, TTWSP) to facilitate
behavior change. The study provided an opportunity for participants to raise awareness of their employment concerns among identified influential advocates. Participants identified the importance of a targeted approach in multiple outlets that to date
have included national advocates, including representatives from the Department of
Labor, the American Medical Association, the National Rehabilitation Association,
the American Public Health Association, and local agencies including
community–based HIV/AIDS service organizations and the District of Columbia
Rehabilitation Services Administration.
LIMITATIONS
Conclusions based on this study are subject to several limitations. First, a convenience sample was used and may not be representative of the employment–seeking behavior of PLWHA. Second, participant responses may have been biased by a
reluctance to contribute to discussions perceived as relevant to social desirability concerns, receiving services, and “faking good” (Streiner & Norman, 1995). Third, the
employment decision–making model represents the perceptions of PLWHA, based
upon personal experience, and may not necessarily align with the protocol of an
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agency providing employment services. Despite the limitations, the study provides evidence that Photovoice methodology provides a structure to explore the employment–seeking behavior of PLWHA and identify specific variables to intervene upon.
CONCLUSIONS
Our study findings reinforce the significance of employment for PLWHA and the importance to intervene at multiple levels. Although employment was perceived as a societal expectation of which the outcomes are valued, PLWHA identified compliance
with prescribed medical treatment, Medicare, referents, and perceptions of workplace
discrimination operating as important influences and challenges when seeking employment. Given that PLWHA meeting ADA criteria are provided specific rights as an
individual with a disability, including the provision of employment services through
public vocational rehabilitation services and potential SSA eligibility requirements for
the TWSSP services, it is imperative that employment service providers working with
PLWHA explore such services to address the issues compounding the inability of
PLWHA to become employed.
Based on the participant discussions and the development of the employment decision–making model, the decision of the partnership to use Photovoice to explore the
employment seeking behavior of PLWHA was appropriate. Photovoice empowered
participants to conceptualize potential influences impacting their employment
through photography and discussion. In sharing photos and statements, participants
became a cohesive group acknowledging their commonalities to developing employment–seeking behavior strategies. Further studies should explore Photovoice as an
empowerment strategy. Photovoice is not merely a research method but also a process
in which the group outcomes are greater than the sum of the independent
contributions of the participants.
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