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Work? a Qualitative Inquiry Into the Experience

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Work? a Qualitative Inquiry Into the Experience RETURN TO WORK? A QUALITATIVE INQUIRY INTO THE EXPERIENCE OF PEOPLE LIVING WITH HIVIIUDS Stephanie Ann Nixon, BA(Kin), BHSc(PT) A thesis submitted in conformisr with the requirements for the degree of Master of Science Graduate Department of Rehabilitation Science University of Toronto Q Copyright by Stephanie Ann Nixon 2000 National Library Bibliothèque nationale of Canada du Canada Acquisitions and Acquisitions et Bibliographie ÇeMces services bibliographiques 395 Wellington Street 395, rue Wellington Ottawa ON K1A ON4 OttawaON KIA ON4 Canada Canada The author has granted a non- L'auteur a accordé une licence non exclusive licence allowing the exclusive permettant à la National Library of Canada to Bibliothèque nationale du Canada de reproduce, loan, distribute or sel1 reproduire, prêter, distribuer ou copies of this thesis in microform, vendre des copies de cette thèse sous paper or electronic formats. la forme de microfiche/nlm, de reproduction sur papier ou sur format électronique. The author retains ownership of the L'auteur conserve la propriété du copyright in this thesis. Neither the droit d'auteur qui protège cette thèse. thesis nor substantial extracts fiom it Ni la thèse ni des extraits substantiels may be printed or otheMrise de celle-ci ne doivent être imprimés reproduced without the author's ou autrement reproduits sans son permission. autorisation. Retum to Work? A Qualitative Inqujr into the Experience of People Living with W/A.DS Stephanie AM Nixon hifaster of Science, 2000 Graduate Department of Rehabilitation Science, University of Toronto Abstract In the mid-1990'~~medical advances dnmatically changed the experience of living with HIV/AIDS. The shifting medical climate spurred new social and hancial questions, such as the possibility of retuming to work. Considering retuming to work, however, is a complicated process for people Living with KIWAIDS. This qualitative snidy has shown that the participants are hfiuenced by, and wrestle with, both the dominant societai perspective that 'people should work", and also the oppositional perspective that people living with HIVIAIDS "should not remto work". Parsons' "sick ro le" concept and Charmaz' s "hierarchy of identities" contribute to theoretical understanding of the results. These findings have conceptual and methodological implications for literature in the areas of HN/AIDS, retum to work, identity, and rehabilitation. Results aiso inform practice and couid serve to minimixe the negative consequences of wrestling with this decision for individuals living with HWAIDS who are considering retuIIiing to work Aclmowledgements Many thanks to many people. To Rebeca Renwick, Jack Williams and Joan Eah, my thesis cornmittee members, for their patience and thoughtful guidance. To the Ontario HIV Treatment Network, the Canadian Association for HlV Research, and the University of Toronto Graduate Department of Rehabilitation Science for financial support. To Carol Fancott and Barbara Gibson for our lunches where 1did al1 of the talking. To AsNey, Peter, Geoff and the extended HQ family, my favourite distractions. And hally, to my Mom, Dad, and Andy for their love, financial support, and technological expertise. .. not (necessarily) respectively. Table of Contents Chapter 1 Introduction Chapter 2 Literature Review Conceptual Frameworks in Rehabilitation Overview of Rehabilitation Frameworks Conclusion Return to Work and HIV/AIDS: Response from the HNIAIDS Community Overview of Local Publications Overview of National Publications A Theme Emerges: ''Beware the Risks" Conclusion Remto Work and WIAIDS: Response from the Academic Community "Ernployment Status, Disease Progression, and Poverty" 'Vncertainty and Revival" cbRestnictunngLife" "Sick Role and Empowerment" Conclusion Return to Work for People with Other Chronic Conditions ûverview of the Research Conclusion General Return to Work Literature Overview of the Research Conclusion The "Sick Role" Criticisms of the "Sick Role" Identity Reconstruction in Chronic IlIness The "Hierarchy of Identities" Conclusion Smaryand Research Question Chapter 3 Methods Research Design Ethical Considerations Participant Recruitment Sample Table 1: Participant Characteristics Data Collection and Analysis Data Andysis Strategies Acknowledging my Role in Shaping Data Analysis Acknowledging my Role in Shaping Data Collection Telling the Stones Reading for the Voice of 'T' Placing People Within Sociopolitical Contexts The Process Leading to Results Chapter 4 Results The Theme of "Do Not Retum to Work" Links to the HTV/AIDS Community Internalized Perceptions: "1 Should Not Retum to Work" The Role of Health Care Professionak in Delivering this Message smary The Theme of bbPeopleShould Work" Extemal Pressure: "You Shouid Work" Internalized Perceptions: '4 Shouid Work" s-ary "Damned if You Do, Damned If You Don't": Wrestling with the Oppositional Perspectives 'matAre You and Who Are You?": The Theme of Identity Reconstmc tion The Notion of Identity Identity and Work Identity Reconstruction and Renirning to Work Conclusion Chapter 5 Discussion Using the "Sick Role" Concept to Understand the Stmggle Using Charmaz's 'Xierarchy of Identities" to Understand the Smggle Conditions for Shifting Identity Levels Implications for Practice Directions for Future Research Contributions to Theory Summaï and Cariclusion Re ferenc es Appendix A: Research Consent Form and Information Letter Appendk B : Inte~ewGuide Chapter 1 htroduction The following quotes are taken from the Los Angeles Times and the Wall Street Jounial, respectively: One of thousands with AIDS (acquired immunodeficiency syndrome) who have experienced a virtual resurrection in the last 18 rnonths thanks to powerful new drugs, Michael ventured back to the workplace like a prisoner given a sudden repneve fiom a death sentence. Nervous and eager in equd amounts, the 33-year-old San Fernando Valley man was reentering a world he thought he had left for good. Mer yem of living on disability, waiting for the end, many are feeling well enough to contemplate a return to work. Driven by debt and boredom, a rnuch smaller number like Michael have actually taken the plunge.. .For the newly fit, revival can be complicated and fkaught with economic and emotional questions. How to explain that yawning gap on the resume? Will they be able to af3ord good medical insurance once they shed the cocoon of govemment benefits? What happens if they go back to work, lose thek disability payments and the drugs stop working, as they already have for some? (Boxall, 1997) New dmgs and medical advances have meant a second chance for many people diagnosed with.. .AIDS. But for some, the blessing of improved health has been a fiamcial curse.. .Moreover, just because sorneone is no longer dying doesn't mean they are able to live a full life and retum to work. Because a return to work often means dismantling a carefully constructed safety net, people should be bnitaily honest about how they feel and whether they can handle a regular 940-5 day. (Asinov, 19%) The preceding quotes reflect the changing profile of human immunodeficiency virus @TV) disease. Since the virus was discovered almost two decades ago, advances in medicai management have drarnatically altered HIV/AIDS. In particular, the advent of protease inhibitors in 1996, and subsequent combination hgtherapies, have contributed considerably to slowing disease progression and improving the survival of people living with HIV/AIDS (Carpenter, Fishcl, Hammer et al., 1998; Palella, Delaney, Moorman et al., 1998; Rachlis & Zarowny, 1998). Although a hown cure does not yet exist, HIV Section has become pe~ceivedmore as a chronic, cyclicd ihess (Phillips, 1998). Many asymptornatic people have been staying healthier longer, many people who were ill have regained health (Cohen & Fauci, 1998; Palella et al., 1998). The tide, however, is hiniing yet again. Despite the initially encomging results, limits of the new dmgs are now being realized in the form of wat resistance and hgtolricities. The long-term success of these drugs appears limited; HWAIDS remains unpredictable. With these shifts in EW/AIDS over the past three years, new clinical and socioeconomic questions have been raised Ironically, improvements in health have created a new assortment of stresson as people who had accepted and engaged in the process of dying cautiously negotiate re-engagement in living (Grubb & McClure, 1997). In her Wall Street Journal article, Asinov (1 998) describes the plight of people who "structured a life that had no tomorrow" by seiling life-insurance benefits, estabiishing substantial debt, raiding retirement funds, and going on disability (p.A22). Having expenenced ahost-miraculous improvements in health, many people now face serious financial challenges. Asinov also addresses the myriad issues facing these people when considering retuming to work, such as the Bexibility, or infiexibility, of disability policies, social security and iife insurance. Deciding to return to work becornes Mer complicated as new information pours in about the limitations of the b'miraculous"new drug regimens as discussed in the recent New York Times article, "Promise and Peril of New Drugs for AIDS" (Altman, 2000). In "AIDS Patients Face the Consequences of Life", Ferguson (1998) describes these unexpected gains in health as "a daunting gW. Issues such as the complicated decision to remto work are descnbed as "the irony and paradox of living with HIV/AIDS.. .there still is social stigma, the challenge of a changing
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