Academic journal article Health and Social Work

The Impact, Meaning, and Challenges of Work: Perspectives of Individuals with HIV/AIDS

Academic journal article Health and Social Work

The Impact, Meaning, and Challenges of Work: Perspectives of Individuals with HIV/AIDS

Article excerpt

As individuals with HIV/AIDS live longer and maintain healthy and productive lives (Bellenir & Dresser, 1995), professionals who work with individuals with HIV/AIDS must shift their approach from managing an immediate medical crisis to managing a chronic, long-term health issue (McReynolds, 1998). Individuals who only a few years ago might have been told to "retire" and enjoy the remaining years of their lives are reconsidering the valuable role of work in their lives (Caulfield, Carey, & Mason, 1994). For many individuals who have improved health, returning to work or maintaining their employment is now a critical consideration (Goodman, 1997).

In addition to contributing to financial well-being, work is important in maintaining self-esteem and social connections (Rushing, 1995), and these functions may be particularly important for an individual dealing with a life-threatening disease (Mason, Carey, Jaskulski, & Stukey, 1995). Individuals with HIV/AIDS report that maintaining their employment throughout their illness is important to their emotional well-being, dignity, and motivation (Timmons & Fesko, 1997).

Individuals with HIV/AIDS must consider several issues as they contemplate the role of work in their lives. Stresses include struggling with the societal response to the disease and the decision of revealing their status to others. As with other stigmatizing illnesses, individuals who have HIV/AIDS must decide whether "to display or not to display; to tell or not to tell; to let on or not to let on; to lie or not lie; and in each cases, to whom, how, when, and where" (Goffman, 1963). Disclosure is a double-edged sword: It creates the opportunity for social support, which can be critical in adjusting to the illness, but may cause additional stress as a result of stigma, discrimination, and the disruption of personal relationships (Fesko, 2001; Gard, 1990).

Choosing not to disclose HIV status can interfere with getting appropriate medical and personal support. Individuals may decide to disclose their status to their employer to obtain necessary accommodations. Many individuals with HIV/AIDS need to make changes to allow them to continue to work and maintain their health, whether that change is a reduced schedule, time off for medical appointments, or a reduction in physically demanding tasks (Courage Center, 1994). Although the Americans with Disabilities Act of 1990 (P.L. 101-336) identifies HIV as a protected disability (U.S. Department of Justice, 1992) and requires employers to provide workplace accommodations (Kaiser Family Foundation, 2000), many individuals with HIV/MDS are reluctant to disclose their status and ask for accommodations. Either individuals are not well informed of their rights, or they fear asserting them because of the stigma associated with their illness (Fesko, 2001).

The study discussed in this article examined employment-related needs and supports for people with HIV/AIDS. This study adds to the current body of literature by exploring challenges related to working and determining where assistance is needed. Whereas most of the discrimination literature is primarily anecdotal, our research gains the perspective of individuals with HIV/ AIDS. The study was intended to answer the following questions:

* What are the employment-related concerns of individuals with HIV/AIDS?

* What supports are they using or lacking to address these concerns?


Data Collection

A research proposal for this qualitative study was approved by an institutional review board. Four focus groups were held to obtain the perspectives of individuals with HIV/AIDS on their employment concerns and to identify the primary issues and concerns related to employment. Each focus group lasted approximately 90 minutes. The groups were arranged so that individuals who shared common experiences and similar backgrounds participated together. Recruitment was done primarily through AIDS services organizations (ASOs) identified through the Massachusetts Department of Public Health. Researchers attended ASO staff meetings to explain the purpose of the research and request the agencies' assistance in identifying participants. Each participant was offered a stipend for participation. The sample for the focus groups consisted of 29 individuals with HIV/AIDS. Of the 29 participants 21 were men, 11 were white, 10 Hispanic, and seven African American. Participants' ages ranged from 25 to 57 years (Table 1).

We developed a protocol to structure the conversation loosely. This protocol included questions about participants' reasons for working, supports they had used, barriers they had encountered, and their perspectives on receiving formal support from state services systems and informal support from family and friends. Although these questions were used to start the conversation, participants were encouraged to discuss their individual experiences and interests freely (Knodel, 1993). This encouragement created a free flow of conversation and allowed us to collect a comprehensive account of participants' experiences. All focus groups were tape-recorded with the participants' consent, and the tapes were transcribed by an independent agency.

Data Analysis

The qualitative data analysis techniques used by the researchers were coding and memo writing. Coding is the analytic process by which a researcher organizes data into themes or categories related to the original and field-inspired research questions (Strauss, 1987). These codes are meaningful labels that denote concepts, actions, or recurrent themes. After the data are coded, the researcher can see relationships and contexts among pieces of data.

We developed codes by reading through the focus group transcripts separately and devising labels and themes that emerged from the data. We then met as a group to assess the codes and create a master list of codes and definitions. At that point, teams coded each transcript. The group then met as a whole to reconcile the codes and achieve consensus. As new data were collected, we repeated the process of conceiving and reconciling codes, and additional codes were added to the master list as appropriate.

Memos are the systematic, written musings of the researchers that occur during the coding process and focus the emerging themes and concepts into a discussion that emphasizes the outcomes of research questions. Memos generate organizational schemes and further conceptualizing or sorting of the data. While conducting the analysis, we met regularly to discuss the emerging data and the memos generated by this process.


Analysis of data revealed the importance of work to people with HIV/AIDS and the impact of the disease on their employment options. Study participants discussed their work-related obstacles and concerns. Participants' needs differed depending on whether they were employed or unemployed. In addition, the data showed the informal and formal supports participants used to address these roadblocks.

Importance of Work

Individuals with HIV/AIDS described employment as a central source of well-being and dignity. In all four focus groups, participants described their ongoing desire to work, not only to provide economic stability, but also to increase self-respect and self-fulfillment. As one participant said,

   You keep your mind distracted with work. It helps
   us rehabilitate ourselves in a positive way. All of
   this contributes to the quality of life. It is always
   better to work. It is something that motivates you,
   that fulfills you, that actually [gives] something
   in return.

Others talked about the increased sense of freedom that employment can provide: "You've got more say-so ... you feel more available to do whatever you want to do." Still another participant described the value of work thus:

   You don't work only for food, you work to be
   able to have fun as well, that is what employment
   is for, to pay [for] your apartment, bills, and you
   also work for your emotional and spiritual
   health ... I also work to upgrade myself ... [work]
   helps me keep my dignity, my self-esteem up
   high ... We are at a productive age, we can still do
   a lot.

Economic necessity, therefore, is not the only compelling reason for work, but, as these individuals indicated, employment brings greater feelings of independence, self-sufficiency, and emotional and physical health. In addition, focus group participants described a desire to contribute to the community and to feel like a part of the workforce, describing employment as an essential aspect of how adults define themselves as individuals: "We have to work not only for the pay, but it is also part of the personality of the individual ... It is something very essential to us. I like to contribute, and that for me is very important."

Study participants also illustrated the difficulties associated with unemployment. They felt that unemployment created an overabundance of spare time in which to contemplate their illness. They commented on the need to keep occupied: "I have to keep myself occupied. I don't care if I just do volunteer work ... I have to keep myself real busy." Others expressed feelings of boredom and uselessness associated with unemployment that could easily accentuate a susceptibility to depression: "There are a lot of people out there that are dying of depression and their self-esteem is on the ground, precisely because they don't do anything but stay in their homes." Focus group participants described this unhappiness as having a detrimental effect on their physical health. One participant said "I feel worse when I stay at home ... on the days that I don't go into work, I regret staying at home ... So even if I have to crawl into the shower and get dressed, I will do it and leave the home."

Impact of HIV/AIDS on Employment Choices

The focus group participants concluded that their health status affected not only the likelihood that they would work but also the quality and variety of their employment options. They described having fewer employment alternatives as a result of having HIV/AIDS. For example, individuals with job experience working with chemicals or paints may no longer have the immunity to withstand the environmental dangers of the job. One individual who had held a position requiring heavy labor described his fatigue and inability to endure the physical demand:

   I would like to go back to work, doing what I
   used to do, but I know I can't do that because it
   involves a lot of lifting ... dealing with a lot of electricity
   and working with my hands. And I just
   can't do that [anymore].

Another individual described his situation in this way:

   I used to work in big restaurants ... but I can't get
   back into that profession. [They don't want you]
   handling the meat, handling the food, they're
   scared you might cut yourself. You know, no
   matter how clean you try to be, you know it's
   going to be ... "you can't work over my grill."

Finally, although focus group participants preferred full-time employment, they felt limited to part-time options. The strain of working long hours in conjunction with juggling numerous doctor's appointments left individuals with HIV/ AIDS feeling like they had fewer job options.

Employed individuals, in particular, said that if they were not HIV-positive they would be doing something different in terms of work. Most saw themselves working in the same job or position but with increased hours or greater potential for growth. Participants imagined that if they were not HIV-positive they would either seek different employment options in new professions or return to the profession they were in before acquiring HIV.


Focus group participants were asked to identify and describe obstacles and concerns that they perceived to be related to the workplace and employment. The two most prominent roadblocks named were concerns about social security benefits and fear of discrimination related to disclosing their HIV status.

Social Security Benefits. One of the most common employment-related concerns for both employed and unemployed participants was the effect of working on social security benefits. Employed individuals were particularly concerned that their income would make them ineligible for cash and medical benefits. Focus group participants expressed fear that if they needed to stop working, they would face a lengthy reapplication process during which they would lack health insurance. Individuals reported the need for help regarding health insurance.

Unemployed individuals felt that a major obstacle to returning to work was the impact it would have on their social security cash benefits. Unemployed participants identified this as their most critical concern. Also of concern was the effect of employment on health benefits which, in many cases, are provided through social security. Unemployed focus group participants concluded that the risk of losing social security benefits often outweighed the advantages of returning to work. One participant described this common concern: "A lot of us are scared to probably go get a job because they figure it's going to cut our supplement. Because if we do work a certain amount of hours ... our subsidy is going to go bye-bye." Another said,

   I am not working but then if I go to work, they
   will take away SSI ... next thing you know, my
   money equals the little bit that I get from SSI. So
   you know what, I have the best benefits now. That
   is my problem. If I was to work, probably as soon
   as you're out of the system, you get sick, I imagine,
   then can't get back into the system [SSI].

Fear of Discrimination. Another common employment issue faced by individuals with HIV/AIDS was whether to disclose their diagnosis at the workplace and fear of the discrimination that might follow. The majority of employed individuals said that people they worked with were aware of their HIV status. Of those who had disclosed their diagnosis, both employed and unemployed individuals reported informing primarily their supervisors and general coworkers before staff in human resources or coworkers they were friendly with. When asked how people at work had been informed of their HIV-positive status, most indicated self-disclosure. A few individuals said that coworkers or employers were able to infer that they had HIV/ AIDS because of multiple illness-related absences.

Individuals who chose not to divulge their health status were concerned about the psychological stress caused by the fear of discrimination. Although only a few focus group participants indicated they had experienced discrimination or harassment, many felt that the anxiety caused by the possibility of discrimination was detrimental to their health. Employed individuals who had not revealed their health status at work reported that this decision was influenced by the belief that having HIV was a private matter and was not relevant to doing their job. Also influential were concerns that disclosure might create a barrier to future work opportunities and promotions.

The same group of employed respondents indicated that certain circumstances would increase the likelihood of informing people at work. The most prominently noted circumstance was the perceived opportunity to help educate others. Another factor that might positively influence the decision to disclose would be a greater feeling of comfort discussing personal information with a supervisor or coworkers. However, the majority of employed respondents said that they would leave their job before disclosing to either their supervisor or their coworkers, indicating that sharing this important information was not a probable or conceivable option.

Many participants shared experiences with discrimination or uncomfortable feelings they encountered related to their health status. One participant explained the reason for his decision not to disclose at the workplace:

   They called me in the office and they said ... we
   really want to know so we can help you ... and get
   you the proper care and all that subtle stuff. But
   when it came down to it ... [they wanted to know]
   so that they could get rid of me.

Another noted the outcome of having had the courage to share his HIV status: "I noticed a big change in their attitude towards me as far as the way they treated me. It was almost to the point of being hostile at times, which I was surprised at."

Needs of Unemployed Individuals with HIV/AIDS

Whereas employed and unemployed participants shared the primary concerns of social security benefits and discrimination, other concerns were associated with employment status. Unemployed individuals indicated a desire to return to work. When asked about their concerns about returning to work, they were most focused on the job search, the availability of jobs, and finding a job that matched their needs and interests. These findings indicate the need for job search and job placement assistance for unemployed individuals with HIV/AIDS.

Unemployed individuals also had needs related to service delivery systems that they had used in the past to help with employment. This group felt that ASOs could not provide adequate assistance with job training and job searches. They reported that the state vocational rehabilitation agency was helpful with job training, but significantly less responsive to their job placement needs.

Needs of Employed Individuals with HIV/AIDS

Employed individuals with HIV/AIDS were more concerned with assistance related to job accommodations, rather than the job placement and job search concerns expressed by unemployed individuals. Participants described the types of job accommodations they needed. The most common accommodations requested were time off for medical appointments and modifications in work schedules. Less frequently requested accommodations included changes in job duties and reduced work hours. Participants who received accommodations explained that changes occurred in the form of altered duties, changed responsibilities, or different hours. The majority of these individuals felt that the modifications had been positive. However, many of the individuals who had requested a job accommodation said that their accommodations were not granted.

Supports Used to Address Work-Related Issues

Focus group participants reported using personal supports (such as friends or family) before professional resources (such as therapists or case managers) when they had employment-related issues they needed to discuss. Less commonly used supports were medical staff or members of a peer support group. Few individuals said that they had no one to talk to about their employment concerns. Participants described their support groups as being helpful for information and resource sharing but not particularly helpful for employment-related support. They were enthusiastic about the idea of developing employment-related support groups for people with HIV/AIDS. Participants expressed a desire and felt able to support other individuals with HIV/AIDS regarding employment issues.

As for formal employment supports, a few participants reported using their state vocational rehabilitation agency for help with employment. However, participants reported feeling discouraged by the long waiting lists they encountered. They also said that ASOs were only partially responsive to their employment concerns, and participants generally did not turn to this resource when addressing work-related challenges. As a result, individuals with HIV/AIDS were connected with multiple systems and services, none of which wholly met their needs: "I'm affiliated with a lot of different agencies ... like five. Each agency gives me something different. Of all the agencies that I'm affiliated with, [not one] covers everything that I need as being HIV [positive]." Participants also reported using a variety of more informal support options:

   I went to different support groups ... I went to
   counseling, just a lot of different things to find
   what I was more comfortable with. And in my
   travels to all of these different outlets ... you are
   still leaving yourself with a choice. You don't have
   to be affiliated with the group as a whole, but you
   can select [what you want from each].


These findings suggest that employment issues are of serious concern for individuals with HIV/AIDS. Although participants noted the value of employment, they also reported limitations in employment options that were the consequence of their health status. Other work-related obstacles and concerns included disincentives for social security beneficiaries to work and the fear of discrimination related to disclosing their disability in the workplace. Unemployed individuals with HIV/ AIDS had concerns about the job search and inadequate assistance with job training that they had received from service delivery systems; employed participants were more concerned about job accommodations. Finally, fewer than one-quarter of the study participants had used the state vocational rehabilitation agency for assistance, and participants also reported that ASOs were only partially responsive to their employment concerns. The findings from this study have several implications for social workers who are working to support individuals with HIV/AIDS.

Addressing Concerns about Social Security Benefits

This research clearly showed that individuals with HIV/AIDS perceived the negative impact that working can have on social security benefits. Social workers can increase an individual's awareness of legislation that addresses this issue. The Ticket to Work and Work Incentive Improvement Act (TWWIIA) of 1999 (P.L. 106-170) expanded the options for social security recipients who want to return to work. A primary goal of this legislation is to increase options for individuals to maintain their health insurance. (Most individuals are mainly concerned about losing their insurance, because reduction in their social security check may be offset by wages.) Under this legislation, states can develop Medicaid Buy-In programs that allow individuals to purchase Medicaid coverage if they work in a job that does not offer insurance or to address costs not covered under an employer's insurance. States can mandate that the premiums be on a sliding scale based on the individual's income, but premiums cannot exceed 7.5 percent of an individual's total income. Extended period of eligibility for Medicare coverage was also expanded under TWWIIA. Individuals who stop receiving Medicare because they are working can return automatically to Medicare coverage should they stop working within eight years of returning to work. In addition, states have Benefit Planning and Assistance Programs that employ staff to help individuals understand their benefits.

TWWIIA also includes a mechanism to help social security recipients who want help finding a job. The "Ticket" part of TWWIIA will be sent to social security recipients, who can then purchase job development assistance from an "employment network" that provides employment supports. The Ticket purchases any supports the individual needs to return to work, and the employment network is paid with the funds from the reduction in social security payment.

Social workers also can educate individuals with HIV/AIDS about work incentive programs for individuals who receive Supplemental Security Income (SSI) or Social Security Disability Income (SSDI). Such work incentive programs often allow individuals to continue to work while maintaining health insurance and eligibility for cash benefits. The challenge of these work incentive programs (Sections 1619a and 1619b, Plan for Achieving Self Support [PASS], Impairment-Related Work Expenses [IRWE], and BlindWork Expenses [BWE]) is that they are poorly understood and underused (Ross, 1996). In addition, the perception that SSI/ SSDI and work are mutually exclusive constitutes a significant barrier to work incentive programs. This is because before an individual can explore such programs, he or she must be aware that SSI/ SSDI recipients are both able and permitted to work (Dreilinger & Timmons, 2001). Identifying knowledgeable advocates who can supplement information from the local social security office can help social workers and clients understand the various work incentive options. Social workers should encourage individuals to maintain communication with such an advocate, documenting all interactions and keeping records organized.

Building Linkages with Other Service Providers

Only a few participants reported using their state vocational rehabilitation system for assistance with work-related concerns. Social workers can consider establishing formal and informal linkages with vocational rehabilitation and other state resources that provide employment support, such as the Department of Labor and One-Stop Career Centers. One-Stop Career Centers are available to any individual who wants help finding employment. One-Stops can provide a range of services, from electronic job listings, employer information sessions, and help with resume development and interviewing skills to more intensive training programs for eligible individuals.

Social workers should be trained to access these resources and maintain communication with professionals at other agencies by phone and e-mail to further develop informal relationships. Ultimately, building informal linkages and coordinating service delivery would allow entities to capitalize on each other's strengths and draw on each other's expertise (Hamner, Bose, & Timmons, 2001). Linkage-building can also occur more formally and can begin with service providers presenting and describing their services during meetings. At such meetings, all entities can discuss services provision and coordination so that agencies' roles can be clarified, gaps in services provision filled, and services duplication reduced. Agencies should compile resource lists and descriptions of available services to be used by counselors and individuals with HIV/AIDS. Developing an agreement outlining the mission, objectives, and strategy of the collaboration between agencies can change practices at the service delivery level and strengthen a shared sense of purpose.

Designing Disclosure and Accommodation Strategies

In many cases, the anxiety over disclosure was a more considerable obstacle than the actual response once others in the workplace were informed. Social workers can help the individual weigh the advantages and risks of disclosure. If an individual chooses to disclose, social workers can help the individual develop a workplace strategy before telling others, script a disclosure statement (focusing on positive contributions and avoiding medical jargon), and practice the statement until individuals are comfortable presenting the information. Taking into account the individual's personal style and comfort in sharing such information, the counselor can help the individual assess whether to tell selected people or share more openly. Together, the service provider and individual can decide how to discuss confidentiality with supervisors and articulate which actions the individual would find supportive.

Social workers can also help individuals with HIV/AIDS advocate for job accommodations by clearly identifying individuals' needs, mapping out potential solutions, and documenting the request and anticipated outcome. Social workers should encourage individuals to be direct and honest when asking for an accommodation, change in schedule, or leave of absence. To encourage a more positive response from supervisors and coworkers, the individual should be clear about his or her needs and realistic about the time required, and, if possible, suggest a plan to cover responsibilities. By understanding their company's policies and formulating potential solutions in advance, individuals with HIV/AIDS can make it easier for their supervisors to incorporate job accommodations into the workplace.


Several limitations of this study should be noted. First, employment concerns for individuals with HIV/AIDS are continually evolving as modifications in treatment change the nature of issues and concerns that arise. In addition, because these findings are not from a probability sample, they cannot be generalized to the larger population of individuals with HIV/AIDS. However, this qualitative research can provide a glimpse of the employment issues for this group and suggest points of discussion.

By proactively raising questions about employment, social workers can identify sources of concern for each individual and develop strategies to address these concerns. Social workers need to consider the implications of work on social security and health benefits, options for help finding employment, the need to weigh disclosure decisions, and the need for accommodations. As we learn more about the meaning, impact, and challenges related to employment for individuals with HIV/AIDS, support services must adapt to maximize the independence and quality of life of this population.

Table 1. Description of Focus Groups and Participants

               Number of        Method of            Participant
Group         Participants     Recruitment         Characteristics

Springfield        9         AIDS services      * 4 women, 5 men
                               organizations    * 5 African American,
                                                  3 Latino, 1 white
                                                * Age range: 25-38,
                                                  average age: 31.6
                                                * Primarily
                                                  individuals with
                                                  histories of
                                                  substance abuse
Cambridge          7         AIDS services      * 2 women, 5 men
                               organizations    * 2 African American,
                                                  1 Latino, 3 white,
                                                  1 nonrespondent
                                                * Age range: 25-57,
                                                  average age: 37.3
Boston             8         Ads placed in      * 1 woman, 7 men
                               two newspapers   * 1 Latino, 7 white
                                                * Age range: 25-57,
                                                  average age: 37.3
                                                * Primarily men who
                                                  themselves as
Boston             5         Support group at   * 1 woman, 4 men
                               health center    * Age range: 38-40
                                                * All Latinos who
                                                  spoke Spanish as
                                                  first language
                                                  (focus group
                                                  conducted through


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Jaimie Ciulla Timmons, MSW, is a research associate, Institute for Community Inclusion, University of Massachusetts, 100 Morrisey Boulevard, Boston, MA 02125; e-mail:

Sheila Lynch Fesko, PhD, is a senior research associate, Institute for Community Inclusion, University of Massachusetts, Boston.

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