Employment issues as related by individuals living with HIV or AIDS. (Employment Issues).

Counselors working with individuals living with HIV/AIDS face a challenging dilemma: a significant number of this group are feeling better, yet many are concerned about transition issues as they reach out to once again embrace work and careers. Returning to work is unexplored territory for many and we have little precedent to guide them, especially now that complex medication therapies are part of the equation. The following study outlines the issues that are confronting people living with HIV and AIDS as they work to move out of disability benefit dependence into the world of work today.

Many health care professionals no longer view HIV/AIDS as the acute deadly disease of the early 1980's but consider it a long-term chronic illness, one for which preparation for long term care is essential. National statistics showed marked declines in AIDS incidence and deaths beginning in 1996 and continuing into 1998. As the number of deaths related to AIDS declined, the number of people living with the disease increased substantially. Decreases in AIDS deaths were attributed to better prophylaxis for opportunistic infections (OI), and treatment with highly active antiretroviral therapy (CDC 1998, 2001). Despite improvement in health as a result of the availability of new treatments, efforts at workforce entry has not been easy for this population (Martin, 1999). People who have undertaken a medication therapy regimen experience problems with compliance, lifestyle changes, physical or health problems as a result of medication treatments, as well as uncertainty about the advisement of workforce entry or reentry (Bogart, Kelly, Gray-Bernhardt, 2000). Estimates show the U.S. losing over $1.8 billion in productivity each year due to the absence of individuals with HIV and AIDS from the work force. Meanwhile, approximately $1.5 billion is currently being paid by public and private disability insurers to sustain people living with the disease (National AIDS Fund, 2001).

Vocational rehabilitation services can assist individuals living with HIV or AIDS to address the work-related concerns and to return to the workforce. Research has shown significant correlation between long-term health and employment among people with HIV/AIDS, as they report improved quality of life and functional status (Chammas, 1999; McReynolds, 2000; Swindells, Mohr, Justis, Berman, Squier, Wagner, & Singh, 1999; Yelin, Greenblatt, Hollander, & McMaster, 1991). Those with flexible schedules and higher levels of education fared better in this research. Yet going to work is a "Catch-22" for many people living on insurance and public agency benefits (Greene, 1998; Larson, 1999). Contemplation of benefit loss can create anxiety in the decision-making process.

When individuals living with HIV or AIDS consider transitioning back into the work world, a number of other barriers to success are reported in the literature. One relates to the lack of knowledge of their rights as individuals with disabilities in the workplace. Other studies report negative feelings and emotions associated with having a disease and the psychosocial issues that impact individuals' ability to work or be productive on the job (Brashers, Neidig, Reynolds, & Haas, 1998; Gilden, 1997; Livneh & Antonak, 1997; McReynolds, 2000). This is compounded by the fact that an increasing number of individuals living with HIV or AIDS lack resources and have poor or nonexistent work histories because of homelessness, substance abuse, mental health problems and a host of other related factors (Heath & Rodway, 1999; Martin, 1999).

Whether or not to disclose HIV+ status is a dilemma faced by the majority of individuals. The stigma and lack of knowledge that exists in the general community and in the workplace can cause reactions which lead to fear of discrimination, loss of social relationships, possible job losses, or loss of health insurance benefits (Brooks & Klosinski, 1999; Adam & Sears, 1996).

One issue under research relates to medication management and how it impacts the lives of people entering the workforce, maintaining work, or considering a new career (Crespo-Fierro, 1997; McReynolds, 2000). These complex therapies require multiple medications which need to be rigorously taken and are to be ingested at different times of the day, sometimes on an empty stomach, sometimes with food. These medications may cause fatigue, diarrhea, nausea or a host of other symptoms. Some medications must be refrigerated. Disclosure to employers becomes a concern for many as they may require reasonable workplace accommodations so they can continue the medication regimen.

In order to assist people in exploring these work transitions, rehabilitation counselors must have a better understanding of the issues individuals living with HIV or AIDS face in today's environment. The understanding and information dissemination must originate with the experience of the individuals themselves and be updated regularly because of rapidly changing treatment dimensions.

Method

Research Design

This study focused on answering the following questions: 1) What are the employment aspirations of individuals living with HIV or AIDS? 2) What factors affect the efforts of individuals living with HIV or AIDS toward obtaining gainful employment? 3) What employment issues are present for individuals living with HIV or AIDS? The study combined both quantitative and qualitative methodology to explore the issue of employment and living with HIV or AIDS. The survey instrument and in-depth interview protocols were developed by the authors under the guidance of a consumer self-help group from the local AIDS Service Organization (ASO) and an expert panel consisting of researchers, service providers and individuals living with HIV or AIDS.

Participants

Participants for this study were recruited directly from community AIDS service organizations and treatment clinics, employment service providers, state vocational rehabilitation offices, and physician offices in larger regional cities in one Mid-Western state. Participants met the following criteria: 1) 18 years of age or older; 2) have a diagnosis of HIV or AIDS; 3) newly employed (within the past three months) or have an expressed willingness to enter or re-enter the work force. Potential participants called a toll-free telephone number to express interest in participating in the study.

A total of 51 participants completed the two interviews. The subject sample size was submitted to a statistical power analysis. For an effect size of 0.4, at a power level of 80% and an alpha of .05, the minimum sample size for this particular study would be 36.

Demographics of the study participants is located in Table 1. Of the 51 participants who completed the two interviews, 38 were male (74.5%) and 18 were female (25.5%). A total of 23 were African American (45.1%), 21 were Caucasian (41.2%), 5 were Hispanic American (9.8%), and 2 were of other ethnic backgrounds (4.0 %). The median age of the participants was 43, and more than half of the participants had been diagnosed with AIDS (52.9%). A total of 42 participants (82.4%) self-reported one or more additional disability conditions that were not related to their HIV or AIDS diagnosis, with the most frequently identified condition being chemical dependency (42%).

Data Collection

A sequence of two personal interviews were conducted with each respondent. Interview One was conducted face-to-face with a research associate and Interview Two was done approximately four months later by telephone with the same researcher. Interview One focused on gathering base line information including HIV/AIDS status; health history; education and employment history; alcohol and other drug use history; financial information including benefits applied for and received; and usage of social services. Interview Two focused on changes in health status, social services received, progress through vocational rehabilitation services or employment, personal perceptions of problems which interfere with employment, and barriers.

Survey instrument. The survey instrument for Interview One consisted of 110 items and Interview Two, 130 items. For additional information regarding the questionnaire, contact Jo Ann Ford at Substance Abuse Resources and Disability Issues at Wright State University.

In-depth interviews. Interviews were conducted in private meeting rooms as arranged with the respondents. The initial interview lasted an average of 112 minutes and the second interview lasted an average of 62 minutes. Participants were paid $50 for each interview. Identities were protected through use of a coding system.

Data Analysis

Quantitative responses, including variable descriptive statistics and database transforms to calculate other variables (e.g., percentage of HIV-related and non-HIV-related disabilities), were analyzed using SPSS version 10.0. Qualitative data were subjected to analysis simultaneous to collection and interpretation. The information was sorted into categories and substantiated by domain analysis, a technique by which semantic terms are organized within more comprehensive cover categories, thus enabling the researcher to structure each subject's experiences. The content and criterion-related validities of the information were addressed by: (a) expert input, (b) literature review, and (c) peer de-briefing individuals.

Informants were involved throughout the research process. These approaches assisted in adjusting for potential researcher bias. Open-ended questions and using no leading questions addressed the possibility of reactivity.

Results

Table 2 presents a descriptive summary of the mean responses to the survey instrument questions with standard deviations and rank order. The eighteen responses listed in the table had a mean of two or above, indicating that the issues averaged to be at minimum a slight issue or problem overall for the respondents. Seven of the issues identified by the respondents related to health or physical aspects of HIV or AIDS. Specifically, respondents identified fatigue, fear of being exposed to illness, health concerns, standing restrictions, lifting restrictions, use of legs, and the side effects of medications being slight to moderate issues or problems as they related to returning to or staying at work. Another six responses identified psychosocial aspects, including discrimination, disclosure issues, HIV/AIDS stigma, depression, dealing with stress, and anxiety regarding working. The other four issues related to need for new training, loss of benefits, need for flexible hours, need for retraining, and time since last job.

The in-depth interviews provided detailed information regarding the specific issues identified in the survey. The themes of the interviews included: changes identified in job status since diagnosis of HIV+ status; reasons for not working if that was the situation; satisfaction with current job if employed; experiences when looking for employment; experience disclosing HIV status to employers; and recommended job accommodations required for successful employment.

Changes in Job Status Since Diagnosis

Twenty-nine participants reported having left their jobs since being diagnosed with HIV. A numeric summary of the job changes reported by the participants is found in Table 3. The change in type of employment most frequently noted was moving to a less physically or mentally demanding situation. Schedule changes included moving from full-time to part-time hours, and time-of-day adjustments.

Anecdotally, three believed they were fired or "forced out" because of their diagnosis. One said his employer was supportive at first, but let him go for being sick and unable to do his work after he had been off sick for a couple months. Another said that, after he was injured on the job, his employer became scared and cut his hours until he was forced to leave. A third participant said he believes that he was let go from his position after he revealed his HIV status to management.

Reasons for Unemployment Status

Table 4 summarizes responses to the question, "If you are not working, why not?" Of the thirty-five participants responding to this question, two were working part-time and 33 were not employed. Respondents reported that AIDS-related fatigue, and other AIDS-related illnesses such as pneumonia, inequilibrium, stress, loss of concentration, and side effects of medication, made it difficult to obtain or keep employment. One person stated she had been fired due to absenteeism. Depression was an issue identified by study participants with one person reporting she was suicidal while in hospital after learning of her diagnosis. In the group of 20 respondents unemployed due to direct health problems, five had been unemployed five years or longer.

Fear of losing needed benefits, such as Medicaid, is another factor in respondents' lack of employment. One man answered that his medical expenses were $35,000 a year and he could not find adequate employment in the small rural area where he lives. Eight participants who are currently unemployed gave varied reasons other than their HIV status/illness. One is attending school; others lack transportation, or education; another woman was dealing with other personal issues.

Experiences Looking for Employment

Sixteen of the 51 participants described some of their experiences in seeking employment. Seven participants indicated that they had been on interviews and that the interviews went very well (whether they were offered the job or not). Two participants were quite confident in their interviewing skills and their ability to obtain employment if a position meeting their needs is available. For example, one participant said, "Finding a job is not a problem for me. I am diverse in what I know how to do. I often have side jobs doing electrical, plumbing, painting and computer work for people. Many of the nurses at the Veterans Administration [where he receives medical care] are my customers for the side jobs." One individual has utilized the Internet to locate job opportunities and post his resume.

Health problems were a concern for three of the participants. One participant stated, "The job that I did settle on only lasted three weeks because I could not physically keep up." One woman was offered a job working in a laundry facility where some of the duties would be managerial but most would be general labor. She worked for two days and had to quit because of health problems and difficulty meeting the physical demands of this particular job. She believes that her ability to work in physically demanding jobs will improve if she exercises and builds strength in her knees and back. The other participant was offered a job with a video rental company but it occurred at a time when his health and memory problems began to worsen and he was unable to actually start the job.

Some participants described feelings of inadequacy and a lack of confidence during the job search. One individual stated that he is "personally uncomfortable looking for work." Another states, "I was not enthused while looking for work. I always felt like I wasn't going to get the job. I think these behaviors are related to depression and self-esteem issues." Another participant summed up his experience as follows: "I can tell that I am not going to get the job even before the interview is over. I begin to wonder what it is I did wrong. It is awful."

Three individuals expressed frustration with having to rely on public transportation in order to apply for jobs and then to travel to work. Several other participants discussed the difficulty in explaining a significant gap in their employment histories. One participant said, "I have to write down that I haven't worked in two years because of illness. That does not feel good." Several of the participants expressed an interest in returning to school to help close the gap in employment.

Job Search Strategies

Participants shared some of the strategies that they use when looking for work. The most common strategy was to avoid disclosing HIV status. Several relate that their recent unemployment is due to a disability. Some mentioned a co-existing disability that they have, while others do not mention any other details. One individual stated to the interviewer that she was currently on disability and would be re-evaluated soon. This was the reason she wanted to reenter the work force as soon as possible.

Another strategy employed by participants was to identify potential difficult questions, then develop a closed response as an answer. Then the interviewer would have no opening for any further questions on that topic. For example, when asked in a job interview why she had not been employed for a number of years, one individual stated, "I was taking care of a family member who was ill. That situation is resolved now and I am eager to return to work." Another individual indicated that he would tell the employer that he had been off work for a while for personal reasons and indicate that he had kept up with the advancements in his field. His strategy was to re-focus the direction of the questions to the skills that he had that would help him return to work. Another individual did not think that his HIV status should be an issue for any employer and he does not mention disability at all. He does review potential employers' insurance plans carefully to ensure his eligibility for coverage. Participants utilized both personal and community resources to look for work.

Disclosure of HIV Status to Employers

Participants were asked if they have ever told their employer about their HIV status and whether they thought employers ought to be informed. Thirty-four (34) participants reported they told at least one employer about their HIV status. The reasons for informing were varied from a need to be honest to knowledge that the supervisors were understanding and had current contact with AIDS organizations. Of the 34 participants who described the consequences of telling, 18 were of the opinion that the reactions were positive or turned out positively in the end. Five reported negative responses, including job termination. One man described an effort by his supervisor to cause the man to quit work (by giving him difficult or undesirable delivery routes). Two participants reported their employers adjusted work schedules to allow time for doctors' visits and medication, and that co-workers were very supportive.

There were four respondents who had not told their employers. Each said their employers did not need to know, and they were afraid of discrimination. One person said that it was easier to tell the truth from the beginning than to try to live a lie. Some said that they should tell (or did tell) because they believed that it was a chance to counter stereotypes about HIV and teach people about the disease.

Nineteen participants reported they might tell an employer under certain circumstances. These circumstances included feeling comfortable with the employer, being relatively certain the employer would be supportive, or if they got very sick and thought their employer "needed" to know.

Job Accommodations & Identified Barriers

Fifty two percent of participants reported needing a flexible work environment in order to remain or become employed. Accommodations mentioned included flexible scheduling, a liberal sick policy, access to a restroom, and ability to rest. Physical restrictions posed barriers for some participants. They tired more easily now or were simply no longer able to perform certain actions due to strength and/or endurance limitations. Several stated that working part-time would allow them to be both employed and able to take care of themselves. Table 5 provides more information regarding the accommodations that were needed and the identified barriers.

Discussion

The employment pictures painted by the participants in this study are not dissimilar from those of other people with disabilities. The onset of the disability has brought about changes in job status, unemployment is higher than the national average, and there are numerous medical and psychosocial issues that require attention. What is pervasive in this report is the level of concern about potential discrimination and the stigma attached to this disease.

Discrimination is a central theme, whether perceived or real. It has been stated that individuals living with HIV or AIDS fare better in the workplace when they have supervisors who are gay, or work in small organizations characterized by personal, face-to-face relationships with management (Adams & Sears, 1996). Yet, they also fare well in large organizations with formal policies mandating equitable treatment. People without these environmental supports are otherwise left to the preconceptions and arbitrary action of individual employers (CSAP, 1994, Adams & Sears, 1996).

An understanding of confidentiality regulations that impact disclosure is often not trusted and rightly so. State and federal laws prohibit discrimination on the basis of HIV status but laws related to privacy of HIV-related information are state, specific. Companies are required to provide privacy of workers medical information and keep it confidential and separate from personnel files. Yet, not all employers have an understanding of the critical nature of guarding the privacy of the HIV+ employees. It can result in inappropriate sharing of information about a coworker's health status (Vest, Vest, Perry, & O'Brien, 1995).

Fear can be the source of economically-based discrimination. Many employers fear that employees will be less productive as they get sicker, the illness will interfere with business (customers will go elsewhere or coworkers might refuse to work with people with HIV), or their health-related costs will increase. Discrimination based on these fears is not legal (Bogart, et al., 2000). In addition to fear, stigma and beliefs about the moral character of the population are a concern. Given the large numbers of people who are gay or substance abusers, living in poverty and members of a minority population, we find multifactored stigmatization occurring, which may result in exclusionary practices (Garcia, Cartwright, & Glenn, 1997; Hunt, 1997).

Fear, stigma, and moralistic attitudes lead the study participants to recommend caution in the area of disclosure of HIV status for individuals looking for work or employed. This caution was understandable but problematic given the potential need for job accommodations and protection under the Americans with Disabilities Act. Study participants identified specific job accommodations that would assist them in obtaining and maintaining employment. These include modified work schedules, access to refrigerators or food and water, time to rest or liberal sick leave. It is hard to hide the fact that you are taking medication of any sort, especially when the medication schedule is complex.

There are numerous psychosocial issues that will impact an individual's ability to work or be productive on the job as noted by the study participants. Stress related to relationship problems join fears about personal health and mortality issues. These issues can interfere with normal cognitive function, lead to loss of sleep as well as physical or mental health deterioration.

The responses in this study show individuals living with HIV or AIDS and employers alike have concerns about the physical demands of work and the functional limitations associated with the disease. Previous research suggests that individuals living with HIV or AIDS who held physically demanding jobs were more susceptible to job loss than those with college educations and flexible scheduling. (Massagli, Weissman, Seage, & Epstein, 1994). There was definite concern expressed about the potential loss of medical benefits in some job choices. Medications are expensive and require health insurance or disability benefit structures for funding (Reid, Kitchen, & Deutsch, 1999).

Individuals living with HIV or AIDS need vocational rehabilitation assistance from people who are competent in their ability to help them. Counselors must have the skills to assist people in making appropriate job choices (Yelin, et al, 1991) and assist with understanding the factors that influence transition to work, (e.g., medication therapies, understanding the disease, and management of stresses and concerns of the disease) (Glenn, Garcia, Li & Moore, 1998; McReynolds, 2001).

Vocational rehabilitation professionals need to confront issues related to serving people with HIV and AIDS. They are and will continue to be present on caseloads throughout the country because of the disability of HIV or AIDS or another primary disability, such as substance abuse (Hunt, 1996). Studies have also shown that rehabilitation counselors need specialized training and experience to work successfully with this population (Glenn, 1997; Hunt, 1996; WID, 1994). The field of rehabilitation has begun to research and develop policies, programs, and practices for serving people living with HIV or AIDS, but many questions remain unanswered. Even if the questions are answered, they will need to be continually reevaluated given the changing trends of the disease and treatments.

Limitations

This study sample was self selected which limits the potential generalizability of the findings. An assumption was made regarding the transferability of information in selecting the sample population recruited to participate. Also the sampling/recruitment procedure may not represent the universe of individuals with HIV or AIDS who attempt to utilize state vocational rehabilitation agencies. Similar research with a more geographically diverse population would assist in ensuring generalizability to the larger population.

Another limitation is the use of self-report information. These types of instruments allow study participants to measure the issues as they perceive them, however, they are backed up by direct observation or other supportive documentation.

Table 1: Demographic characteristics of participants

                               Frequency    Percent

Age
  18 - 25                          0            0%
  26 - 35                         10         19.6%
  36 - 45                         29         56.9%
  46 - 55                         10         19.6%
  56 +                             2          3.9%
Median Age = 43
Gender
  Male                            38         74.5%
  Female                          13         25.5%
Ethnic Background
  Caucasian                       21         41.2%
  African American                23         45.1%
  Hispanic American                5          9.8%
  Pacific Islander                 1          2.0%
  Multi-Racial                     1          2.0%
Educational Background
  Less than High School            7         13.7%
  High School/GED                 23         45.1%
  Associate's Degree/
  some college                    15         29.4%
  Bachelor's Degree                3          5.9%
  Additional Graduate
  Studies/Graduate Degree          3          5.9%
Diagnosis
  HIV+                            24         47.1%
  AIDS                            27         52.9%
Multiple Disabilities *
  Yes                             42         82.4%
  No                               9         17.6%

* Disabilities directly related to HIV/AIDS were not included
here. These were self-reported disabling conditions.

Table 2: Rank order of issues related to returning to or staying at
work (n=51) (1-4 Likert type scale; 1 = Not an issue, 4 = Severe issue)

Issue                               Mean    Std. Deviation    Mean Rank

Fatigue                             2.35         1.09           27.16
Fear of being exposed to illness    2.49        11.24           27.71
Discrimination                      2.49        11.27           27.22
Need for new training               2.35        11.23           26.03
Disclosure issues                   2.31        11.19           26.35
Loss of benefits                    2.51        11.43           25.99
Need for flexible hours             2.31        11.17           25.12
Health concerns                     2.27        11.11           25.16
Time since last job                 2.18        11.32           24.19
HIV/AIDS stigma                     2.18        11.24           24.06
Standing restrictions               2.10        11.15           23.94
Need for retraining                 2.04        11.20           23.71
Lifting restrictions                2.12        11.14           23.59
Use of legs                         2.04        11.13           23.40
Depression                          2.10        11.22           23.10
Dealing with stress                 2.08        11.09           22.85
Side effects of medication          2.06        11.21           22.77
Anxiety regarding working           2.02        11.19           22.07

Table 3: Changes in job status since diagnosis (n=32)

Job Status/Issue                                   # Respondents

No changes                                               7
Left job                                                29
Change in type of employment                             6

Presenting Issue for Change

Changed because of health/stress                        20
Fired, forced out because of HIV status                  3
Change because not able to deal with
  HIV issues                                             2
Quit because thought she was going to die                1
Quit because afraid for own health                       1
Ambition decreased because of depression                 1
Quit because hated job and could get
  disability benefits                                    1
Quit to keep medical benefits through Medicaid           1
No reasons given                                         5

Table 4: Reasons given for not working (n=35)

Reason                                             # Respondents

General HIV status and related illnesses--total         20
Fear of loss of benefits                                 4
Stigma related to HIV/AIDS                               1
Other                                                    8

Table 5: Job accommodations needed and identified barriers (n=51)

Accommodations needed and barriers             Respondents   Percentage
  identified

 1. Flexible hours, scheduling and sick            28           52%
    leave policy (ability to stay home if
    feeling poorly, attend doctor's
    appointments)

 2. Physical restrictions such as not              11           20%
    standing for long periods of time,
    sitting when needed, resting when
    needed, no heavy lifting (physical
    limitations due to conditions or
    medication)

 3. Part-time work (full-time schedule too          9           17%
    fatiguing, physically & mentally
    stressful)

 4. Close access to restroom                        7           13%
    (medication side effects)

 5. Work at home (ability to rest, close to         4            7%
    restroom, privacy)

 6. Low-stress job and job environment              4            7%

 7. Additional training or education                4            7%

 8. Close to home (ability to go home if            2            3%
    feeling poorly or to rest, to take
    medications or use restroom in private)

 9. Other: large print & computer screen           19           36%
    (vision problems), babysitting,
    transportation, parking, elevator,
    climate control, access to counseling
    services, access to water

10. None (no accommodations necessary at            4            7%
    time of interview)

11. None (current employer already making           3            6%
    accommodations)

Acknowledgement

This project was funded through a grant with the National Institute on Disability and Rehabilitation Research, #H133B70018. The award was made through the Research and Training Center on Drugs and Disability at Wright State University.

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Margaret K. Glenn
West Virginia University

Jo Ann Ford
Dennis Moore
David Hollar
Wright State University

Margaret K. Glenn, Associate Professor, Counseling H R & E, 504H Allen Hall, PO Box 6122, Morgantown, WV, 26506-6122. Email: [e-mail]