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Working It Out: Workplace Experiences of Individuals with HIV and Individuals with Cancer

Research to Practice 21

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Originally published: 7/1999

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Introduction

Advances in the treatment of cancer and HIV infection are allowing individuals with these illnesses to continue working or return to work in greater numbers than previously possible. The nature of these illnesses and their treatments have implications for the workplace as well as for the individual employee. While both cancer and HIV infection are identified in the Americans with Disabilities Act as disabilities that are protected from discrimination, individuals continue to feel anxiety at talking about their illness in the workplace and requesting necessary accommodations. This brief describes the experiences of individuals with either illness, the similarity and differences in their experiences and provides strategies recommended by participants in the areas of disclosure, support and personal advocacy in the workplace.

Participants

Individuals with cancer and individuals with HIV infection were recruited to participate in a forty five minute interview to discuss their employment related experiences and concerns. Thirty two individuals were interviewed, 18 with HIV infection and 14 with cancer. Eighty-eight percent of the sample were between the ages of 30 and 50 and all participants were working or had been working in the previous six months. With participants consent, most interviews were tape recorded. The tapes were then transcribed and the content was coded to identify consistent themes across subjects.

Findings

The decision to tell their supervisor and/or co-workers about their health status varied substantially between individuals with HIV infection and those with cancer. All of the study participants with cancer disclosed to their employer and co-workers. In contrast, only a third of the individuals with HIV infection told everyone in their workplace.

Most of the individuals interviewed experienced a range of reactions from people at work, but the majority of people, both those with HIV infection and those with cancer, experienced positive and supportive reactions. More individuals with HIV infection reported examples of negative or unpleasant experiences in their interactions with others.

Due to the nature of both HIV infection and cancer, individuals who had these diagnoses required adjustments to their work routines. Sixty-four percent of individuals with cancer reported receiving accommodations on their job, as compared to 50% of people who were HIV+.

Despite similarities in the symptoms they experienced, the manifestation of these two illnesses was described differently by participants in this study.

Discussion

Individuals with cancer and those with HIV infection share many of the same experiences in dealing with a significant medical concern in the workplace, but the nature of their illness and societal responses to each diagnosis create some differences. Individuals with HIV infection frequently indicated that the stigma associated with the disease caused them to be reticent in disclosing to others. Stigma was infrequently raised as a concern for people with cancer and this difference is reflected in their willingness to share their diagnosis with others. With this free disclosure of their health status, individuals with cancer reported that they felt that they received more support than they would have otherwise received. They received more accommodations than individuals with HIV infection and in some cases received more accommodations than they had requested. This greater number of accommodations may be related to the severity of physical symptoms some individuals with cancer experienced.

Although both people with cancer and those with HIV infection experienced some negative reactions or discriminatory behavior, only people with cancer pursued legal avenues to address these concerns. Twice as many people who were HIV+ reported feeling they had been treated unfairly or had been discriminated against, but none of them contacted lawyers. It was unclear why this difference existed between people with cancer and those with HIV infection. It may be that the people with cancer were better educated about their rights or felt they would get more support through the courts than did individuals with HIV infection. The stigma that continues to be associated with the HIV virus may also be a barrier for individuals pursuing their legal rights. There is less of an expectation of support by individuals with HIV infection and this may carry to their expectations of the court system.

Implications

Study participants suggest the following strategies in dealing with a significant medical concern in the workplace.

Decision to Disclose

The decision to disclose HIV status or a cancer diagnosis is a personal choice that needs to be made with careful consideration. Participants felt there was no right or wrong answer to the question of disclosure. Individuals might consider some of the following factors as decision are made.

Disclosure Strategy

If any individual chooses to discuss they should develop a workplace strategy prior to telling others. The following features should be considered in this strategy.

Requesting Accommodations

Rights and Resources

Knowledge about legal rights and resources was viewed as an important component of an individual's workplace strategy, but many study participants indicated that it was challenging to know where to find this information. The following resources are available to individuals who are dealing with a health concern at work.

For more information about this study, contact:

Sheila Lynch Fesko
Institute for Community Inclusion/UCEDD
University of Massachusetts Boston
100 Morrissey Boulevard
Boston, Massachusetts 02125
617-287-4365 (v), 617-287-4350 (TTY)
sheila.fesko@umb.edu

For a publications brochure or general information about ICI , please call 617-287-4300, ici@umb.edu

Acknowledgements

This brief reflects the contributions of Michelle Zalkind for assistance in developing the recommendations for workplace strategies. The author would also like to thank the study participants who were so generous with their willingness to share their experiences and insights.

This publication will be made available in alternate formats upon request.

This is a publication of the Center on State Systems and Employment (RRTC) at the Institute for Community Inclusion/UAP (#H133B980037), which is funded, in part, by the National Institute on Disability and Rehabilitation Research (NIDRR) of the US Department of Education. The opinions contained in this publication are those of the grantees and do not necessarily reflect those of the US Department of Education.

Copyright 2001, All rights reserved