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
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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 virus, and now there are work issues and hancial planning issues" (Ferguson, 1998, p.B2).
MV/AIDS se~ceorganizations have demonstrated extraordinary leadership by producing a wealth of documentation in the recent years in an attempt to meet the new challenge of retuming to work at the individual, community and national levels. This phenornenon, however, has yet to be conceptualized in the scientific fiterature. Despite this lack of attention to retum to work issues in HIV/AIDS, the issue has been addressed in other populations. Disorders having similar charactenstics to
HIV/AIDS include the unpredictable course of multiple sclerosis, and the rem-to-health phenomenon associated with organ transplantations. Work issues have been explored with both of these populations, and although the results are iimited in generalizability to people living with HIVIAIDS, important conceptual and methodo logical messages may be gleaned 60m these bodies of literature.
Clearly, for people living with HIV/AIDS, the decision to retum to work is complicated by clinid, social and fuianciai questions. Furthemore, the implications of this phenomenon are fa-reaching and potentiaily costiy, both in terms of public and private sector spending and individual heaith and quaiity of life. An important gap in the literature is research conceming how people living with HIVJAIDS perceive, understand and approach the issue of rehiming to work. Chapter 2
Literature Review
The following chapter examines various bodies of literature relevant to the experience of considering retuming to work for people who are living with HN/AIDS.
Rehabilitation provides one framework Born within which return to work rnay be viewed.
Therefore, the first section will discuss conceptual frameworks in rehabilitation.
Returning to work for people living with HIV/AIDS was Fust identified as an issue by the HIV/AIDS community. As such, literature published by W/AIDSservice organizations will be considered. Studies from the academic literature descnbing the expenence of people living with m/mS who are consideMg retuming to work will
then be reviewed.
Next, studies of organ transplant recipients and people living with multiple sclerosis will be reviewed based on common charactenstics that these individuals hold with people living with HrV/AIDS. General, non-HIV/AIDS retum to work literature will then be considered.
Finally, two theoretical perspectives will be discussed in order to provide a
foundation for discussion of the return to work expenence. First, Panons' (1951) "sick
role" concept will be reviewed. Then, the concept of identity reconstruction in chronic
illness will be reviewed with a focus on the '%erarchy of identities" proposed by
Chmaz (1987). This chapter wili conclude with a çummary of the literature, the
findings of which lead to the research question. .* . Conceptual Fmeworks in R&&&atton
A primary goal of rehabilitation is to assist people in rnanaging the specmim of issues related to disablement fiorn injury or disease. As such, remto work may be considered under the rehabilitation umbreila Rehabilitation models provide a fkamework for conceptualizing the scope of this field and thus a usehl staaing point for thinking about the retum to work issues of people living with HWAIDS. For instance, while the bbmedicaImodes' focuses on the level of disease, rehabilitation is concerned with the functional and social consequences of iUness beyond disease. Although several rehabilitation fhmeworks exist, they have limitations. This section will discuss conceptual kameworks in rehabilitation and their relevance to the study of rehuning to work for people who are living with HIVfAIDS.
Semantic and conceptual differences exist among rehabilitation hrneworks.
Nagi (1967) attempted to address the need for a framework to differentiate among the closely related phenornena surrounding disablement and disability. His hmework is comprised of four concepts: "disease"; "impairment"; "functional limitation"; and,
"disability". 'Pisease" or "active pathology" refen to the body's attempt to restore normalcy after an interruption caused by disease. 'Tmpairment" refers to the anatomical
andlor physiological abnormalities that coexist during or after the disease process.
"Functional limitations" are set by impairments on the individual's ability to perform the task of maldaily activities. Finally, ccdisability"describes a pattern of behaviour
evolving in situations of ongoing impairments related to fûnctional limitations. Nagi made a particularly useful contribution to the field by using this hmework to conceptuaiiy delineate the role for rehabilitation. Whereas the goal of medical treatment is to arrest underlying pathology, the goal of rehabilitation is to reverse the course of disability and the underlyhg functional limitations (Nagi, 1967). More recently,
Verbrugge and Jette (1994) expanded on Nagi's definition of disability by developing the
"Disablement Modei" that also incorporates psychosocial factors that may affect the process of disablement.
The World Health Organization (1980) developed a similar, but more descriptive,
system designed to classi@ the health-related consequences of disease. This framework,
the International Classification of hpairments, Disabiiities and Handicaps (ICIDH), also
descnbes the concept of disease plus three levels of related manifestations. The ICIDH
conceptualizes injury as leading to functional "impairment", which in tum leads to
"disability" in an individual's behaviour and activities, which generates a b'handicap" or
disadvantage with respect to social roles. As such, the Nagi and World Health
Organization heworks share a common conceptuaiization of "disease" and
"impairment", but b4disability"in the ICIDH is defhed as "any restriction or lack of
ability to perform a task or an activity in the manner considered normal for a human
being" (World Health Organization, 1980). Furthemore, the hal stage in the ICIDH is
"handicap" which is defhed as "a disadvantage for a given individual resulting fkom an
impairment or a disability that limits or prevents the fulfillment of a role that is normal
(depending on age, sex and social and cultural factors) for that individuai" (Badley,
1995). Although the ICIDH framework has grown in popdarity, it has been cnticized for its hearity, its weak concephialization of '%andicap", and its lack of conceptualization of the role of environment in the disablernent proc ess (Fougeyrollas, 1995; Fougeyrollas,
1998; Noreau & Fougeyrollas, 2000). The World Health Organization is currently attemptùig to address these issues through the developrnent of the ICIDH-2,an expanded and mertheorized version of the ICIDH (World Health Organization, 1999). In this version, disability and handicap are renarned activity and participation. In particular,
Fougeyrollas (1995; 1998) and his colleagues (Noreau & Fougeyrollas, 2000) have expanded the concephialization of "handicap" as follows:
Handicap should always be considered the situational result of an interactive
process between two senes of causes or determinhg factors: the charactenstics of
a person's impairments and disab ilities resulting fkom disease and trauma; and the
environmental charactenstics creating sociocultural or physical obstacles in a
given situation: family life, employment, education, recreation, incorne, etc.
(Fougeyrollas, 1995, p. 14%)
In general, these rehabilitation frameworks provide a usehl way to conceptudke the landscape of issues that may result hma disease like HIV/AIDS. Semantic and conceptual differences do elcist among frameworks, however, and within fhmeworks
there is Little theoretical understanding of the relationship between and among concephial
levels, such as impairment and disability. Furthemore, rime of the frameworks
adequately captures the role of structural forces in the process of rehabilitation and
disablement. Concbsion
Retum to work and related factors may clearly be conceptualized under the Mc of rehabilitation. For instance, HIV-related fatigue as a barrier to returning to work would be considered an impairment in al1 three of the frameworks discussed above.
Difficulty wallong wouid be considered a hinctional limitation by Nagi and a disability under the ICIDH. Issues of employment and income are explicitly addressed in bo th the
ICIDH and ICIDH-2 conceptualizations of handicap/participation.
Thus, employing rehabilitation hmeworks to conceptualize retum to work highlights the potential for a broad range of related issues, fiom the micro level of the organ in the body to the macro level of the individual in society. The current state of rehabilitation fiameworks, however, also flags the challenge of understanding the relationship between different conceptual levels and their influence on the return to work process.
etum to Work and JXW/qlDS: Re-e FromhdiWMDS Com,miuly
The advent of protease inhibitors in Canada in 1996, and subsequent combination antiretroviral therapies, or "cocktails", has dramatically enhanced the Iongevity and outlook of people living with HIV/AIDS. The durability and safety of these "miracle" drugs, however, is now being questioned. The result is a new era, the "protease era", in which people with HIV/AIDS are balancing the optimism of a temporarily extended life span with the challenge of Living with impairments, disabilities and handicaps. New opportunities have arisen in this ciimate, including the possibility of returning to work.
This concept, however, is far hmsimple. The emergence of return to work as an issue in the "protease era" was kt identined and addressed by the network of community-based HIV/AIDS senice organizaticns across Canada. A wealth of documentation was created in 1997 and 1998 in response to the needs of their constituents, ranghg f?om two-page pamphlets to ninety- page national study reports. Each of these documents is based on the iine of reasoning that combination antiretrovirai therapy has led to irnprovernents in health for many people living with HN/AIDS, and that these health gains have prompted many people to consider retuming to work.
Because they have been created by HIV/AIDS service organizations, these documents are designed to serve, educate and protect people living with HKV/ADS. As such, the following further assumptions are intenvoven throughout each document: that the quality of life of people living with HIV/AIDS is paramount, that retuming to work cm compromise the quality of life for people living with HTVIAIDS, and, therefore, that retuming to work is a nsky decision. This section will provide an overview of the literature created by Canadian HIV/AIDS service organizations regarding retum to work issues, concluding with implications for research in this field.
. . ew of Local w11catia
In 1997 and 1998, many documents emerged at the national level and in the three
Canadian cities with the highest HN prevalence rates, Montreal, Toronto, and
Vancouver. The British Columbia People With AIDS Society, Westem Canada's Iargest
HIV/AIDS se~ceorganization, responded to the remto work trend by developing a document entitled, "Issues and Guiding Prhciples for Remto Woric, Vocational Rehabilitation and Rehabilitation Services in the Context of HIV Infection" (British
Columbia People With AIDS Society, 1997). This document, which has received international acceptance, articulates guiding principles for stakeholders involved in the return to work process, inchiing government, insurers and health care professionals.
These principles are organized into six categones: medical science and research; self- determination; flexibility; safety; responsibility; and, hcome security (British Columbia
People With AIDS Society, 1997).
Toronto-based HIV/AIDS seMce organizations such as the AIDS Cornmittee of
Toronto, the Toronto People With AIDS Foundation, and the HIV/AIDS Legal Chic
(Ontario), aiso contributed to the retm to work discussion. For instance, the AIDS
Cornmittee of Toronto's finai report on their newly initiated "What Now?" support group identified that, aithough renewed health affects many facets of life, retum to work issues dominated the focus of the programme. The report outlines several areas of conceni related to remto work, such as feu, guilt and stigma (AIDS Committee of Toronto,
1997).
The AIDS Committee of Toronto then conducted a study entitled "Back to the
Future" that explored retum to work issues facing people living with HIV/AIDS and the
availability of services to meet these needs (Grubb & McClure, 1998). Through consultation with stakeholder groups, a needs assesment questionnaire, and focus group discussions, a broad range of potential retum to work strategies were recommended for the AIDS Committee of Toronto to undertake, such as hiring an Employment Senices
Coordinator and partne~gwith the Canadian AIDS Society on a national initiative
(AIDS Cornmittee of Toronto, 1998; Grubb & McClure, 1998). Meanwhile, the Toronto People Wiîh AIDS Foundation employed a Benefits and
Assistance Counselor who prepared a self-assesment tool for people contemplating rehiming to work (Toronto People Living with AIDS Foundation, 199713). This tool leads the reader through a series of reflexive and practical questions regarding interests, medical state, physical abilities, financial statu and psychosocial factors, ali of which may compromise, or be compromised by, an attempt to retum to work.
In the same year, the HIV and AIDS Legal Clinic (Ontario) published "A Brief
Guide to the Ontario Disability Benefits System" and other pamphlets designed to orient people to both the benefits and hazards of provincial income support plans (HIV and
AIDS Legai Clinic [Ontario], 1998a, 1998b, 1998~).Risks associated with retuming to work were featured throughout these publications.
The leading HrV/AIDS service organization in Quebec, COCQ-SIDA, presented a scientific poster on retum to work at the 12" World AIDS Conference in Geneva in
Juiy, 1998 (Jalbert & Masson, 1998). They reported the hdings of a survey of 449 people of varying employment statu living with HIV/AIDS in Quebec. The authors descnbed work issues advenely affecthg people living with HIV/AIDS including: disclosure issues around sexual orientation and seropositivi~;obstacles created by shct hgregimens and adverse side effects; and, difficulty explainhg lengthy absences on cmicuium vitae (Jalbert & Masson, 1998).
While these documents emerged at the local level, the Canadian AIDS Society, the umbrella organization for many local and provincial HIV/AIDS service organizations, developed publications of national scope. For example, in March 1998, the Canadian
AIDS Society released a report on benefits counseling issues and strategies for fiiture work in KIV/AIDS service organizations (Zack, 1998). This report was generated hm key informant interviews and a literature search with particular emphasis on the experience in the United States. Results focussed on the need for capacity building in benefits counseling for HIV/AIDS senrice organizations in Canada (Zack, 1998).
In November 1998, the Canadian AIDS Society released "HN/AIDS: A Guide to
Insurance Benefits" created in consultation with the AIDS Committee of Toronto and the
Canadian Life and Heaith Insurance Association. This publication comprehensively addresses health, disability and life insurance issues in Canada to help people living with
HIV/AIDS better understand and manage their insurance benefits (Canadian AIDS
Society, L998b).
Finally, in December 1998, the Canadian AIDS Society published "Force for
Change: Labour Force Participation for People Living with HIV/AIDS", a report on an eight month national research project funded by Human Resources and Development
Canada (Canadian AIDS Society, 1998a). The goals of the "Force for Change" project
were to establish a comprehensive understanding of "labour force attachent" issues, and to increase awareness among consurners, community organkations and public and pnvate sector service providers of the workforce integration needs of people living with
HIVIAIDS. One chapter is devoted to the results of regional consultations with people
living with HIV/AIDS in which concerns were raised about returning to work. The
issues are extensive, including such areas as bancial security, the changing labour marke f disclosure and discrimination, and the implications of new treatments (C anadian
AIDS Society, 1998a).
eme Emer~es.. "B ew are th e Rrsks*. 9,
This review demonstrates the comprehensive, multi-faceted, and somewhat integrated response of the HIV/AIDS community in Canada to the relatively new issue of returning to work for people living with HIV/AIDS. Also striking is the speed with which HIV/AIDS service organizations have produced these publications. The result of this response is a new "discourse" regarding retuming to work and HIV/AIDS.
Furthemore, these publications demonstrate a growing consensus around return to work issues with one centrd theme emerging: "beware the nsks".
"Beware the risks" describes information on the potential risks of retuming to work that is featured in every document reviewed. For example, "Force for Change" discusses an extensive Est of concems raised by people living with HTV/AIDS about renirning to work (Canadian AlDS Sociew 1998a). Although presented in an emotionally-neutral tone, this information could be daunting for a person conternplating returning to work.
Other documents use a more ernotionally-charged approach. For instance, "A
Bnef Guide to the Ontario Disability Support Program" provides concise information on navigating the new Ontario Support Disability Program system, but does so using a distinctly cautionary tone. Examples of headings in the document include: 'Vhere
Should 1Apply - Things to Watch Out For" and "Why This is Scarier Than You Think"
(HIV and AIDS Legal Chic [Ontario], I998a). HIV/AIDS service organizations appear to conceptualize the decision to remto work or not as a scale with the "pros" on one side and the "cons" on the other. Since these documents have been developed to protect people living with HWAIDS Eom the nsks associated with returning to work, they emphasize the breadth of "cons" or risks associated with rehirning to work. Such nsks include: unpredictable durability of positive effects from new drugs; unpredictable onset of debilitating side effects; inability to remto disability insurance coverage if health relapses; potential job (and therefore benefits) loss after returning to work in this climate of "downsizing"; interference fiom symptoms such as diarrhea or profound fatigue; worsened health due to stress and long hours without rest; potentially unhealthy work environment (especially considering immunocomprornised status); difficulty managing elaborate cimg regimens (especially if
food or refhgeration necessary); difficulty maintaining schedule of medical appointments; risk of disclosure of HIV status (especially in trying to explain gap in resume); and, nsk of disclosure of sexual orientation (AiDS Committee of Toronto. 1998;
Canadian AIDS Society, 1998a; Grubb & McClure, 1997; HIV and AIDS Legd Chic
[Ontario], 1998~).The 'pro-con" scale becomes so one-sided that the message "do oot retum to work" is imp ticitly delivered.
Conclusioo
In conclusion, the HIVIAIDS community has created a wealth of publications in
response to the issue of renirning to work for people living with HIV/AIDS. The redt
of this response is a new "discourse" regarding retum to work. The emphatic message being sent to people living with HIV/AIDS through these documents is that reniming to
work is a dangerous decision that should not be undertaken unless the individual has carefdly scrutinir!ed the myriad possible pitfds. The dominant perspectives and powerfbi influence of this newly established discourse are crucial to consider in the study of the retum to work experience of people living with HIV/AIDS.
wW In the years following the response nom the HTVIAIDS community, the acadernic community has begun to address issues of remto work. Four studies have been published related to the experience of thinking about retuming to work in the "protease era". This section will review ihese studies and conclude with implications for fûture research.
lovment Stms. Disease Promession. and Poverty"
Despite the fact that return to work has clearly emerged as a concem for people living with HN/AIDS in this clirnate of renewed health, the oniy acadernic study directly investigating this issue is an Australian national study of 925 people Living with
HIV/AIDS examining the relative effect of disease progression and employment status on poverty (ET, De Viller & Bartos, 1999). Overdl, results fiom this study demonstrated that employment status has a greater influence on economic hardship and poverty than disease progression among people Living with HTV/AIDS in Australia Embedded within this survey anaiysis, however, were important results with respect to return to work.
Of the people who were not working at the time of completing the survey, 59% were considering reeturning to work. From the choices available on the survey, "87% cited financial reasons for wanting to return to work, while 73% cited psycho-exnotional reasons (e.g. to relieve boredom, to do somethinp worthwhile), and 46% reported improved health as a reason for wanting to remto work" (Ezzy et al., 1999, p.409).
The shidy also demonstrated that the people who were considering retuming to work reported greater economic hardship and were more likely to report that their health was b'excellent". There were no ciifferences with respect to number of yean since HIV diagnosis, whether or not they had been ciiagnosed with AIDS, or their most recent CD4+ or viral load counts. Eyy et al. (1999) concluded that the decision to remto work is eected by self-rated health and economic hardship and not by markers of disease progression.
This study demonstrates that retuming to work is an important issue for people living with W/AIDS who are unemployed. Further, there appears to be a variety of factors stimulating this consideration, including financial reasons, "psycho-emotional reasons", and Mproved heaith. This study also holds lessons for sampiing in that no differences were found among people considering retumuig to work with respect to surrogate marken of disease progression. Thus, this survey draws the issue of retum to work to the fore and provides the impetus for fùrther investigation in this area
certaiw and Revivai"
Although not primarily focussed on the issue of return to work, two goundbreakhg studies explore the experience of Living with HIV/AIDS since the advent
of protease inhibitors. In " 'In an Important Way, 1Did Die': Uncertainty and Revival in
Persons Living with HIV or AIDS", Brashers et al. (1999) used focus groups to explore the experiences of people who had faced death, but then repcrted increased optimisrn about sunrival due to advances in treatment. Data were collected and analyzed qualitatively based on the perspective of unceaainty in illness, a theoretical stance developed within the field of psychology (Brashers et al., 1998; Mast, 1995; Mishel,
lWO>.
Results of this study demonstrated that individuals experiencing "revival" encounter various uncertainties that can be a source of psychological stress. The authon identified emerging themes based on four categones of "uncertainties". These uncertainties exist around renegotiating (a) feelings of hope and fùture orientation in the
face of questionable durability of immune restoration, (b) social roles and identities, in the transition Eom a person who is dying to a penon living with a chronic illness,
(c) interpersonal relations, including the potential of stigmatizing reactions corn employers and CO-workers,and (d) the quality of their lives, captured in this quote from one participant, "The good news is you're going to live, the bad news is you're not going
to enjoy the rest of your Life" (Brashers et al., 1998, p.2 13).
With respect to social roles and identities, Brashers et al. (1998) describe the participants as perceiving pressure to remto work, to get off of disability insurance,
and to pay for their medications. These sarne individuals, however, "expressed concern
that their health would be adversely affected by the stress of working", leading to an
"identity dilemma" for the participants as they renegotiated the roles that they couid
assume as "a penon experiencing revival" (Brashers, 1998, p.210). With respect to
interpersonal relationships, participants descnbed retuming to work as creating a "double
stigmay'since they are not only a person living with HIVIAIDS, but also a person who
has become disabled. This study highlights sorne of the uncertainties related to the "dilemma" that people experience when considering returning to work. Also of note is the emergence of identity as important in the process of negotiating retuming to work.
ctunng Life- 99
The second study to explore the experience of living in the "protease era" is
"Restmcturing Life to Face the Future: The Perspective of Men dera Positive Response to Protease lnhibitor Therapy". In this study, Sowell et al. (1998) employed in-depth interviews to explore the psychological changes and care delivery issues experienced by
HIV-positive men who were facing end-stage disease but had experienced dramatic physical irnprovements. Three overarching categories emerged with interrelated themes.
The fint category, "protease inhibitors as a reprieve fiom death", included the themes of
"guarded optimism" and 6bbuyingtirne". Secondly, "perspectives on role and
relationships" emerged with the themes "change in relationships" and '~oI-kversus
disability". Within this latter theme, participants discussed the positive and negative
reasons for rehuning to work. Some reported that physical symptoms precluded
retuniing to employment, while others whose symptoms were less severe "were quick to
caution that they were still Unmunocompmmised, and thoughts of retuming to a job had
to be balanced with the potential of oventressing their symptoms and becoming ill"
(Soweil et al., 1998, p. 37). One participant reported that his health care providers had
suggested he refrain nom returning to work too quickiy.
Other reasons reported for refhinhg fkom retuming to work included the physical
demands and "hi& level of mental agility" required in the previous job, the fear of losing disability coverage, and the challenge of maintainhg rigourous medical schedules
(Sowell et al., 1998, p. 37). Positive reasons for retuming to work included improved self-esteem and "work as a way of dealing with the disease" (Sowell et al., 1998, p. 37).
The third and final category identified by Sowell et al. was "need for advocacy and support" with the themes "access to medication", "access to W/AIDScompetent health care" and "focused social services". Need to maintain access to health care and medication after giving up insurance to retum to work was a major concern of the participants identified in this category.
nie authors concluded that people expenencing positive results fiom the new combination thenpies are facing dramatic psychological changes. Further, they advocated for an approach to policy and care that considers the needs of people living with HIV/AIDS within a chronic illness paradigm.
Ln general, this study illustrates the broad landscape of issues related to living Ui the "protease era", but does so in a rather superficial, atheoreticai way. Sowell et ai.
(1998) appear to view the decision to retum to work as a balance behveen positive and negative factors, reinforcing the dilemma concept discussed by Brashers et ai. (1998).
Findly, concerns regarding return to work policy and progpmmiig are identified.
ole and Em~owennent?,
In " 'Sick Role or Empowexment?' The Arnbiguity of Life with an HIV Positive
Diagnosis", Crossley (1998) studies the experience of chronic illness by intewiewing people living with HIVIAIDS who are considered to be "long-term survivors" (average tirne since diagnosis nine years). She explores how the seemingIy contrasting ideologies of "sick role" and "patient emp~wemient'~actually interrelate and coexist in the narratives of people living with HIV/AIDS (Crossley, 1998). This analysis is based on locating the voices and opinions of a group of people living with HIVIAIDS within the dominant 'bdiscourses"available to them. Using this appmach, Crossley highlights implicit contradictions within the increasingly popular ideology of empowerment, demonstrating that the experience of people living long-term with HIVIAIDS actually
Lies somewhere between the dependent sick role and the empowered individual.
This study builds on the fmdings of Brashers et al. (1998) and Sowell et al. (1 998) in that it highlights yet another aspect of the dilemma that people face when considering returning to work. This study is unique, however, in that it is the fmt to employ a structural analysis of the work and illness expenence of people living with HIV/AIDS.
Conclusio~
This section has reviewed the four academic studies of remto work issues in the
"protease era". Various conclusions may be drawn. FVst, contemplahg rehiming to work is consistently reported as an important issue for people Living with HIV/AIDS who have experienced improvements in health fiom the new combination therapies.
Secondly, the decision to retum to work has been conceptualized as a dilemma with pros and cons for both returning to work and refiraining fiom returning to work.
Thirdly, there appears to be a breadth of factors iduencing the remto work process, including physical, psychological, financial, and clinical issues. Finally, factors influencing retuming to work have been concephialized hmthe perspectives of both agency and structure. These conclusions serve to inform Merresearch in this area. . . etum to Work for People with Other Chronic Condihons
The experience of living with HIV/AIDS is unique. There are other people, however, who share characteristics relevant to remto work with people living with
H.IV/AiDS. Organ transplant recipients often experience a dramatic shifi fiom end-stage disease to relative wellness post-transplant. Like people living with HIVIAIDS, they also live with the uncertainty of how long the improvements in health will last.
Similarities rnay be drawn between HIV/AIDS and multiple sclerosis (MS) as well. Both populations are largely comprised of adults in their prime years for employment. Like HWAIDS, people with MS live with chronic, cyclical, multi-system disease. Many of their symptorns are invisible, such as fatigue. Cognitive deterioration is also a feature of both diseases. New anti-MS drugs continue to corne on the market, but their long-term durability is unknown, and the side effects are potentially devastating.
Through the MS Society of Canada, this population also has a voice for social action.
Based on these similarities, this section will review return to work research conducted with people who are living with MS and who have received organ transplantations, concluding with implications for the study of people with HnfIAIDS.
The literature on MS has focused primarily on staying at work and unemployment nther than retuming to work, except for one study arguing for early pensioning and vocational rehabilitation services for people with MS (Hassink et ai., 1993). The studies focussed on unemployment, however, have implications for rehun to work. In general, these studies employed a quantitative approach to investigate the early unemployment rate seen among people with MS. The following "nsk factors" for becoming unemployed were identified: jobs in private sector, jobs needing strength, rigid work schedule, manual precision, fiequent moves, and greater than eight hour work days (Verdier-Taillefer et al.,
1995); working in health-related or se~ceindustq jobs, working in inaccessible environments, fatigue and muscle wealaiess (Jackson et al., 199 1); and, more disability, younger age, female and less education (Larocca et al., 1985). Questions remain, however, about why these factors may impact on employment.
Resea-ch questions focused largely on predicting who will retum to work with linle attention paid to the process of, or the rationale fcr, making this decision. For instance, Brann, Bennet, Kec k and Hosenpud (1998) published the results of a database analysis on the morbidity, functional status and other cihical events in 1853 heart transplantation recipients. They found that only 27% of the subjects were working full time one year post-transplant despite a high Functional capacity.
Adams, Ghent, Grant and Wall (1995) retrospectively surveyed 203 liver transplantation recipients at least nine months post-transplant using an employment questionnaire, the Sichess Impact Profile, and the Medical Outcornes Survey to investigate factors aEecting employment. ResuIts showed that of the 43% unemployed,
18% reported "not feeling well enough", 8% had retired early, 3% had returned to school,
3% cited "famiiy reasons", 3% reported no work available, and 3% chose not to work.
The question rernainç as to why so few of the participants in these studies had returned to work. A key assumption underlying the organ transplantation literaîure is that return to work is an appropriate indicator of success post-transplantation. Therefore, each of the organ transplantation studies seeks to answer a part of the general question: why do some organ transplantation recipients retum to work while others do not? One study, however, explored "reasons why many transplant recipients seem to have trouble finding employment" (Bellchambers, 1993, p.28). Bellchambers found that while some transplant recipients considered employment an important factor in their quality of Life, others did not wish to return to work and "just enjoyed living" (p.29). This finding challenges the underlying assumption that remto work is an appropriate indicator of success post- transplantation and improved health in general.
The only qualitative study found that return to work emerged as a theme in the study of the lived experience of people with liver transplantations (Thomas, 1996).
Through semi-stnictured interviews, Thomas found that the possibility of losing health insurance and disability benefits prevented many people fiom retuming to work.
Furthemore, for people who had aiready renÿiied to the workforce, flexibility in work schedule was a key factor in enabling their transition. Along with implications for heaith professionals, Thomas suggests that "avenues for health insurance reform could be
explored in an effort to empower the transplant recipient" (p.137).
Fear of losing insurance benefits was raised as a disincentive to retuming to work by other studies as well (Markell et al., 1997; Larocca et al., 1985). This hding was
challenged by Paris et al. (1998) who analyzed questionnaire data to profile signifïcant
factors associated with remto work in 99 recipients of lung transplantations. Along
with many b iomedical factors, they considered health insurance and disability incorne, but did not find that fear of loss of disability income precluded employment. In general, however, they concluded that "social factors rernain employment barriers for some, but absence does not guarantee increased return to work" (Paris et al., 1998, p.435).
The comment by Paris et al. (1998) regarding "social factors" is common in this literature. Al1 shidies conclude that there are factors beyond physical limitations that act as barrien to retuming to work. The List of potential factors is vast and has varying descriptions including "social", "social structural" and "psychosocial". Not only is there lack of agreement about these factors, but there is aiso a lack of conceptual agreement around the use of tems such as "sociai". For exarnple, Botsford (1995) reviewed the literature on people with hem transplantations, concluding that predictors of return to work could inciude both "pretransplant factors and social stnictural factors" (p.35). An explication of these "social structural factors", however, was not forthcoming.
Another theme emerging fiom the literature is the issue of patient perception of health, disability and readiness to return to work. For instance, Paris et al. (1998) found that only 37% of people who were deemed "medically able to work" had acnidly retumed to the workforce. Other people self-identified as being "physically unable to work" although this view was described as "inconsistent with the medical assessment"
(Paris et ai., 1998, p.434). Factors positively influencing remto work were largely biomedical, but also included self-report of ability to work.
Hunt, TaDowdy et ai. (1996) used a mailed questionnaire including the
Karnovsky Scale and the Short Form 36 (SF36) to identiQ social and econornic factors
iafluencing retum to work after iiver transplantation in 52 patients. They concluded that
the employed group ranked themselves much higher than the unemployed group on perceived physical functioning and physical role measured on the SF36, despite the fact that physicians considered both groups to have a good level of health.
Finally, Rao et ai. (1991) assessed the specific contribution of cognitive dysfunction to the quality of Me of people with MS, including ability to work. Methods were more comprehensive than in the other studies, including a neurocognitive assesment, a questionnaire on rnood and social functioning, an in-home occupationai therapy assessrnent of activities of daily Living, and an interview with a close fiiend or family member. Cognitive dysfunction was found to be a major factor determining quality of life. People with cognitive impairnient were less likely to be working, engaged in fewer social and avocational activities, reported more sexual dysfunction and experienced more difficulty with activities of daily living.
Conclusion
A variety of conclusions may be drawn based on both the sirnilarities and differences between people living with HIV/AIDS and people with either MS or organ transplantations. First, the majority of studies have employed quantitative methods to investigate factors related to retuming to work. This approach provides Little insight into why or how these factors are involved, and thus these studies are limited in their contribution to the understanding of the experience of reniniing to work. Several studies also suggest that there is a difl'erence between an individual's perception of "readinw to remto work" and that of a physician, further supporthg the need to explore the expenence of retuming to work &om the perspective of the person undergohg the
Procas. Secondly, "social" as weii as physical factors were consistently ïdentified as relevant to rehuning to work. Discussions of these social elements, however, were not in-depth or grounded in a theoreticd Wework, thus providing no linkage to existing theories or the broader understanding about returning to work. Thirdly, as seen in the
HIVIAIDS seMce organization Literature, fear of losing insurance benefits was raised as an issue, although an opposing view was put forward by one author.
Fourthly, in the organ transplantation literature, retum to work was often assumed
to be an indicator of success post-transplant. In other studies, however, this assurnption
was challenged, raising the question of why people who have regained health should feel
compelled or pressured to retum to the workforce. This question is equally salient for
people living with HIV/AIDS.
Finally, the impact of cognitive impairment was flagged as an issue
compromising quality of life and functioning. Issues around cognitive impairment may
also be relevant to the retum to work experience of people living with HIV/AIDS.
Conclusions rnay also be drawn by considering the differences between people
living with HIV/AIDS and people living with either MS or organ transplantations. For
instance, issues around stigma were absent From the MS and organ transplantation
literanire. in HIV/AiDS, however, fear of contagion and judgments about lifestyle are
two important sources of discrimination and therefore may play into the experience of
retuniing to work. Secondly, dthough cornmuni@-based organizations such as the MS
Society of Canada exist, their influence in the retum to work debate appears tu be
minimal relative to that of the HIV/AIDS comunity. In conclusion, looking to the literature on returning to work in people living with multiple sclerosis and who have received organ transplantations provides valuable insights to guide research on the experience of people living with HIV/AIDS who are considering retumuig to work.
General Retum to Work Literature
Despite the paucity of studies regarding return to work issues in HIV/AIDS, the generai field of return to work has received considerable attention. For example, return to work iiterature with other populations includes: people with bums (Safne et al, 1996;
Tanttula et al., 1997; Wrigley, 1995); traumatic brain injury (Brenneman et al., 1997;
Cifu et al, 1997; Greenspan et ai., 1996; Ip et al., 1995); and, hand surgery (Filion, 1996;
Katz et al., 1997). A cornplete review of this literature is beyond the scope of this paper.
hstead, a sample of studies will be drawn fiom the pain literature in order to illuminate
some rnethodological issues pertaining to return to work reseuch. Examinhg the
strengths and wealaiesses of these approaches in the general retum to work literahire is
instmctive when considering a method with which to investigate issues in HIV/AIDS.
ew of the Resear&
Studies have largely attempted to explain the retum to work phenornenon by
describing the differences in sociodemographic statu, work perceptions, and motivation
of those who have retumed versus those who have not. By far, the most popular
methodological approach has been to acquire quantitative data through sweys, ratkg
scdes, medical records, or clinical examination. For instance, Straaton et al. (1996) attempted to identify barriers to return to work among people unemployed secondary to arthntis and musculoskeletal disorden by surveying 218 patients at baseline assesment at their clinic and one year later. They identified having rheumatoid arthntis, disability insurance status, high pain level, older age, and lower education as barriers to retum to work. hplicit in this approach, however, is that the authors were already aware of the breadth of factors that could act as barriers to remto work in this population, and thus, were using this method to codkn and quantify their assumptions. The question remains as to why these factors influence remto work and what other relevant factors were not included in the data collection. These issues are not addressed by the authors.
A similar assumption limits the conclusions of a snidy by Karas et ai. (1997) designed to assess the relationship between Waddell Score (a measure of nonorganic signs, or malingering), ability to centralize symptoms, and returning to work six months post-onset of low back pain. They concluded that a high Waddell score predicts a lower rate of return to work regardless of ability to centralize symptoms, suggesting that there may be more than just physical reasons for not retuming to work. The question remains, however, as to the actual reasons underlying the link between the presence of nonorganic signs and a lower rate of retuming to work. In other words, this quantitative method does not address the questions of "why" and "how".
Fishbain, Cutler, Rosomoff et al. (1997) appear to corne closer to answering this question by examinùig the impact of previous job perceptions on chronic pain patients' remto work after beatment at their pain facility. They found that remto work was predicted by voiced intent to do so, education, "work dangerous perception cornplaint", job physical demands, job liking, and job role conflicts. Voiced intent not to remto work was strongly predictive of not retuming.
The concept of motivation to retum to work has also been shidied by Tan,
Cheatle, Mackin et al. (1997) who assessed the association between personal attributes, vocational factors and retum to work outcomes for 59 patients with chronic nomalignant musculoskeletai pain at a pain program. Sociodemographic information was collected dong with ''rehim to work motivation through an open-format listing of treatment goals"
(Tan et al., 1997, p. 168). Pre-treatment factors predicting future employment were age, marital status, education and length of unemployrnent, but the best predictor was identification of retum to work as a goal.
Ln their prospective cohort study, Mante-Rivard and Lortie (1996) identified the following facton associated with reniming to work after a fint compensated episode of back pain: diagnoçis of spinor pain instead of dise disorder, absence of neurologicd signs; greater than 24 months employed in that industry; working for public venus private business; and, ability to take unscheduled breaks. Interestingly, the authors concluded that "return to work as expected is infiuenced by disease and host characteristics but also by social and work facton. Reinstatement programmes should account for ail these factors" (Infante-Rivard & Lortie, 1996, p.492). The unwritten assumption, however, is that the authon have identified the most relevant "social and work factors".
Gard and Sandberg (1 998) used a Werent methodologicai approach in which the underlying assumptions are consistent with the research question posed. They used a self-described 'phenomeno logical methoâ" to descnbe patients' perceptions of motivating factors for returning to work. This 'cphenomenologicaImethod" involved data collection through semi-stmctmed interviews followed by 'haïve reading of the interview notes, structurai andysis and reflection on the interpreted whole" (Gard & Sandberg,
1998, p. 104). Using this approach allows for the discovery of factors that are relevant to return to work, rather than assuming that they are known and may then be quantified.
This methodology ais0 allows the researcher insight into why and how these factors contribute to return to work.
With this different foundation, Gard and Sandberg (1 998) discovered remto work results that are quite different from the studies that used a quantitative approach.
They identified four themes: structural factors, task content, relationships and self- confidence. "Structural factors" describes the patients' perception of division of labour at work as the most important indicator of retum to work, particularly the ability to do as much work as colleagues. Perceived importance and rneaningfulness of task content was the second theme emerging fÏom the interviews. Thirdly, relationships with coworkers and service to clients were identified as motivating factors. Finally, self-confidence was an important factor boosted by daily responsibility, feedback, and support. Gard and
Sandberg (1998) conclude that "new concepnial fkameworks are needed for possible motivating factors for return to work" (p.407).
These snidies illustrate the strengths and weaknesses of different methodological approaches to the study of issues in retumhg to work. The quantitative approach ernployed by most authors does not allow for the discovery of important but unidentified issues, nor does it reveal why factors affect rehirning to work. Retum to work in
HIV/AIDS is a relatively unsnidied phenornenon, and thus, research should strive to qualitatively explore the expenence rather than quanti@ researcher-selected factors. Also of note is the psychological perspective assumed in the studies; that is, solely individuai- level factors were selected as relevant to rehlming to work with no attention paid to structural influences.
The "sick role" concept considers the circumstances within which people are exempt nom work, and the processes by which they are encouraged to return to the workforce. Thus, the sick mIe concept is relevant to the study of retum to work. This section will discuss the sick role and key criticisms it has received. Unique issues pertaining to HIVIAIDS will be raised, concluding with implications for the study of returning to work in people living with HIV/AIDS.
The sick role concept was developed by Parsons (195 1) within his structural-
functionalist approach to health and illness. As such, health is considered a form of behaviour performed by actors who are socialized to its normative aspects (Jaco, 1979).
The sick role represents the set of behavioural noms that serve to change the sick peaon's orientation to othen in society and vice versa, with the ultirnate goal of
reniming order to the social system.
The role of the sick penon is comprised of four closely related features, two
exemptions and two responsibilities: Ttie occupant of the sick role is exempt fiom normal social role responsibilities.
The occupant is not held responsible for being sick. The person has control over
changing his or her attitude, but not over changing the condition.
The occupant of the sick role defines the state of being il1 as undesirable and has
the obligation to want to get well.
Finally, the occupant has the obligation of seeking and cooperathg with
technically competent help, most often through physicians.
According to Parsons, the concept of the sick role performs various functions for society. First, the conditional legihacy of being sick is bought at the price of recognizing that illness is undesirable and should be recovered nom as quickly as possible. As such, the il1 person is prevented fiom setting an example that others may wish to follow. Being categorized as il1 also puts individuais in the position of being defined as needing and being obligated to accept help. Thus, the role of illness channels people into contact with health care professionals who serve as mechanisms of social control by inhibiting the spread of "deviance" and facilitating the remedial process
(Parsons, 1951). Overall, these feanires are functional to the restoration and presewation of order within the social system.
.. . bL * 3, nhcisms of the Sick Role
Parsons' sick role has been the source of extensive debate over the last half- century, a fidi discussion of which is beyond the scope of this paper. Key criticisms, however, dlbe considered. Fint, the concept of the sick role has been criticized for its
focus on acute, ternporary illness (Radley, 1994; Segail, 1976). The long-tem and potentially non-restorative nature of many chronic illnesses, mental health conditions, and congenitai disorder thus deems problematic the notion of exemption hmsocial responsibilities such as work.
The sick role concept has also been criticized for portraying the patient as passive.
The dynamics of the patient-physician relationship, however, can becorne altered in the absence of effective treatment or cure, as is the case in many chronic illnesses. Authority of the patient and others living with similar circumstances grows in value, thus chailenghg the relevance of the institutionalized sick role expectation to seek help fiom the "expert" physician. Crossley (1998) explored the ideology of "patient empowerment" in contrast to the sick role among people living long-term with HIV/ALDS. She argues that there are ambiguities and dependencies implicit in the empowement mode1 which suggest that a more structural approach, such as the sick role, may still hold relevance to the study of chronic illness experience (Crossley, 1998).
With respect to HIV/AIDS, the sick role fails to take into account the stigrna associated with contracthg the Wus and potential moral judgments related to persona1 responsibility for becoming ill. The sick role also does not address issues related to the communicability of the disease. In general, however, the sick role concept Uiforms research on people living with HIV/AlDS by providing a structural-functionalist perspective fiom which to view the return to work experience.
. . Id-Qon In (%nlabs
In contrast to the structural-functionalist approach of the sick deconcept, the retum to work experience may be viewed kom a perspective that highlights an individual's agency. The concept of identity provides one such perspective. Identity reconstmction may result fkom "losing vaiued attributes, physical fùnction, social roles and personal pursuits through illness" (Charmaz, 1994, p.273). As such, the concept of identity is yi important consideration in setting the backdrop for studying the experience of considering remto work in HIV/AIDS. The field of identity and chronic illness is vast, however, and a thorough review of this literature is beyond the scope of this paper.
The reader is referred to Mead (1934), Blumer (1969), Gofian (1959) and Strauss
(1 969) for early and important writhgs on this topic. This review is centred on the
"identity hierarchy" concept that proposes a relationship between identity and ihess with particular relevance to the return to work experience (Chaaz, 1987).
. . 9, chv of Identities,
Charmaz (1983, 1987, 1990, 1994) has contributed extensively to the conceptualization of identity in the face of chronic illness. in particular, she has provided a framework for considering the reconstruction of identity throughout the downward spiral of chronic illness. Chamiaz characterizes four "preferred identities" that are implicitly developed as individuals attempt to constnict a life apart fkom illness. These preferred identities symbolize the individual's reconsidered assumptions, hopes and desires juxtaposed with the expectations and definitions of hisher specific condition.
Thus, preferred identities represent an individual's motivation and goals (Charmaz,
1987).
Charrnaz fuaher proposes that an "identity hierarchy" becomes visible as people choose among preferred identities. The identiq leveh within the hierarchy reflect relative levels of difficulty in ac hieving aspirations. She States, b'Experiencing progressive illness ofien means reducing identity goals and aiming for a lower level hthe identity hierarchy" (1987, p.285). While the occasional ood is made to the possibility of rising through the hierarchy with improving health, this concept receives littie theoretical attention.
In descending order, the four preferred identity levels in Charrnaz's hierarchy consist of the "supemomal social identity", the "restored self', the "contingent personal identity", and the "salvaged self'. In the "supernomai social identity", people entirely reject the negative images conferred on them by illness and strive for goals which would be considered exceptional even in healthy others.
nie "restored self' anticipates return to pre-illness identity, assuming that recovery is the natural sequel to illness. Types of restored selves include: the
"entrenched self' which anticipates a successfûl corneback to the pre-illness self- conception; the "developing self' in which illness has provided the opportunity to realize possibilities for self-irnprovement; and, the "assumed seif" in which identity is tacit and can only be discemed in relation to the social relationships within which it is associated.
The "contingent personal identity" describes an identity that is hypothetically possible but uncertain secondary to potential Merihess. Ofien, individuals in this identity level have previously presumed supemomal or restored selves, but failed.
Finally, the "salvaged self' attempts to maintain some positive past self-image as good and worthwhile despite the adversity of illness and growing physicai dependence
(Chmaz, 1987). Conditions for selecting a preferred identity include the type and degree of ihess, meanings of expenences of illness, timing and sequencing of illness, and the expectations of and for self. Each shif€ in identity level down the hierarchy represents the adoption of
an entirely new conception of self with revised, and usually reduceà, desires,
expectations and goals. Tension emerges when people central to the chronically il1
individual view that individual's aspirations as representing an inappropriate identity
level.
Charmaz's theory has been criticized for its focus on the outcome of identity
reconstniction while ignoring the process by which this occurs. The hierarchy has aiso
been criticized for its linear, downward trajectory that implies a differential of value
among the identity outcornes (Yoshida, 1993).
Conclusion
The hierarchy of identities has direct relevance to the study of remto work in
that decisions around working reflect an individual's hopes and expectations. Each of the
identity levels may be associated with a different approach to an individual's role in the
workforce, with descent of the hierarchy representing the shift fiom working to
unemployment. Conversely, ascent of the hierarchy represents retum to work. As such,
Charmaz's conditions for shihg identity levels rnay provide valuable insight into the
experience of people living with HIV/AIDS who are contemplatîng retuming to work. s In summary, the profile of KWAIDS is changing. Due to recent advances in pharmacotherapy, many people are regaining health and contemplating options previously unimaginable, such as rehiming to the workforce. Shidies now demonstrate, however, that many stresson accompany the optimism of these health gains, such as living with the unpredictability of the positive medicai response and challenges related to re-engaging in living. The decision to remto work is one such issue that is marked by clinical, social and political uncertainties.
Current knowledge in this area derives ahost exclusively from the work of
KIV/AIDS service organizations whose publications provide a powerful perspective on retuming to work. The few studies from the scientific community conhretum to work as a significant issue and draw attention to the breadth of factors involved in considering this "dilemma".
Retum to work issues facing other populations have received considerable attention in the fiterature. In rnost cases, quantitative methods are used to collect medicai, sociodemographic and other information deemed relevant by the investigators.
The limitations of this approach point to qualitative methods as essential for the study of remto work in order to provide the conceptuai foundation hmwhich to nove forward with future research.
Rehabilitation fiameworks conceptualize remto work issues at multiple levels and are well suited for considering this emerging issue in HIV/AIDS. Parsons' "sick role" concept and Chmaz's '%ierarchy of identicy" are two other conceptual heworks that may serve to highbght important issues reiated to this experience. Based on this analysis of the literature, the research question in the current study is as follows: how do people Living with KWAIDS perceive, undentand and approach the issue of returning to work? Chapter 3
Methods
Researçh Desia
This snidy employs a qualitative interview design to explore the experience of people living with HIV/AIDS who are considering retuming to work. in particular, a grounded theory approach is taken in order to build, rather than test, the understanding of
this phenornenon. This approach facilitates a conceptudization of the data grounded in
the experience of the participants rather than the assumptions of the reseuch, which is a
major weakness of much of the return to work Literature to date. As such, thirteen
participants were recruited to participate in semi-stnictured, in-depth interviews.
Approval was received fkom both the University of Toronto Research Ethics
Board Standing Committee on HIV/AIDS and the St. Michael's Hospital Research Ethics
Board. idonned, written consent was obtained from all participants using the Consent
Form (see Appendix A).
. . arttaDant Recrurw
Participants were sought who meet the folîowing inclusion criteria:
Are HIV+
Have left the workforce
r SeKiden* as considering returning to work, OR have alrrady returned to work In the second half of the study, an effort was made to enroli participants who were fernale and/or bom outside of Canada in order to increase the heterogeneity of the sample and to explore certain themes.
Participants were recruited using two strategies:
contacts in the HIV/AIDS health care community; for example, primary
care physicians and infectious diseases specialists associated with the HIV
Tearn at the Wellesley Central Site of St. Michael's Hospital, and the HIV
Clinical Trials Nurse at St. Mîchael's Hospital
contacts and postings at H?V/AIDS service organizations; for example, the
HIV/AJDS Committee of Toronto, Voices of Positive Women
in al1 cases, the Information Letter (please see Appendix A) was made available to the individual by these health care providers or HIV/AIDS SeMce Organizations with emphasis on the fact that the decision to participate in this study would in no way affect their relationship. The participant made initial contact with the researcher by telephone.
This section attempts tc paint a picture of the individu& whose insights and ideas
form the data upon which the anaiysis is based. Table 1 also provides characteristics of these participants.
Ail individuals were HIV-positive and had le ft work in the pst. Eleven of these
individuais ~e~identifiedas considering retuming to work and two had recently returned. Table 1
Name * Country of Insurance Returned origin coverage to work?
Andrew Canada private Bob Canada pnvate Chris Canada public Doug Canada private Ed Canada private Frank Canada public Greg Canada public Zac k Canada private Hank not Canada pnvate Ian not Canada public Joanne Canada public Kevin Canada public Lara not Canada private
*names have been changed to ensure confidentiality Individuds who had aIready retumed to work were sought in order to capture important elements of the experience beyond just considering the decision. The sample is largely comprised of gay, white males in their thirties or forties. The two fernales in the sample are heterosemial. Slightly less than half of the sample was in a long-term relationship, and only one participant was a parent. Three participants were boni outside of Canada. All participants except one had received se~ces£kom and/or volunteered at an HIV/AIDS service organization.
Former employment ranged fiom part-tirne contract to permanent Ml-the, encompassing both blue and white-collar jobs. Specifically, former jobs included: health care professional; secretary; counselor; repair person; flight attendant; broker; engineer; and, construction worker.
Approximately half of the sample originally lefl work because of il1 heath.
Several othes reported leaving in order to prevent the onset of il1 health. Seven participants were receiving private benefits. Finally, time since HN diagnosis ranged fkom 6 months to 17 yean, and time since leaving work ranged fiom 6 months to 8 years.
In general, these thirteen participants are heterogeneous with respect to many of the factors which could influence rehiming to work, such as former ernployment, private versus public income support, and tirne living with HIV/AIDS. Expenences not captured in this sample include those of Aboriginals, youth, intravenous hgusers, or heterosexual men. ata Collection Ualysis
Data were collected and analyzed using grounded theory, a general methodology htdescnbed by Glaser and Strauss (1967). Theory is inductively denved kom studying a phenornenon. As such, data collection and andysis are not discrete phases, but share a reciprocal relationship in which grounded theory continues to be discovered, developed and provisionally verîfied (Strauss & Corbin 1990; Strauss & Corbin, 1994). The goal of this methodology is to develop concepts and explanations that are gounded in the data, in this case the participants' narratives, observed body Ianguage, and the researcher's field notes.
For this study, data were collected fiom 13 participants using semi-stnicnired, in- depth inte~ews.Despite the fact that participants were free to choose the setthg for the interviews, al1 interviews were conducted at the researcher's office at the Wellesley
Central Site of St. Michael's Hospital in Toronto, Canada, except for one interview that was conducted by telephone for logistical reasons. Interviews were 30-60 minutes in length and were guided by a series of open-ended questions and follow-up probes as outlined in the Interview Guide (see Appendix B). Al1 interviews were tape-recorded and transcribed verbatim.
Interview questions sought to explore the expenence of considering retuming to work. As such, questions explored both reasons in favour of retuming to work and reasons in favour of rekaining fiom retuming to work. Questions also investigated 'hht it was like to be feeling bette?' and thinking about retlrming to work. Al1 efforts were made by the interviewer to present a neutral perspective on whether an individual "shoulà" retum to work or not. As potential themes emerged, questions in later interviews were added to pursue these items. For example, retuming to work as a mechanism for regaining "control" was explored, as was the concept of taking care of one's heaith as "a hll-the job".
Data Aavsis Su
Data analysis is a social activity that is culturally and historically situated. As such, the researcher plays a crucial role in creating, interpreting, and theorizing the research data The question arises, therefore, of how to represent the perspective of the participants while recognizing the researcher's role in shaping the process and product.
The following strategies were employed by the researcher throughout the interpretation of the participants' words into resevch results. It is important to note that this data analysis process is not linear. Rather, strategies were employed and re-employed simultaneously with different transcripts thmughout the process of constant cornparison and questioning of the data.
First, 1explored the concept of reflexivity; that is, "reflecting upon and
understanding our own personal, politicai and intellectuai autobiographies as researchers
and making explicit where we are located in relation to our research respondents"
(Mauthner & Doucet, 1998, p 121). B y considering my forma1 biomedical training and my informal gmoming within the MN/AIDS community, I discovered personal
assumptions embedded in both what and how 1thought about the retum to work issue. For example, I aclaowledged my expectation to hear that considering retum to work was indeed a process whereby people weigh the pros and cons, ultimately resulting in one finai decision. Explicitly naming these assumptions allowed a cleaner reading of the data; rather than automatically pigeonhohg the data into my preconceived framework, I could explore whether or not my assumphons were founded.
ne data colIecnon,
1also considered how participants' expectations of me could shape their answers throughout the inte~ew.For instance, 1 tried to consider the influence of the fact that 1 am a white, female researcher fiom the University of Toronto. Several participants were also aware that I have been employed as the physiotherapist with the HIV Team at the
Welleslev Central Site of St. Michael's Hospital and have done advocacy work in the
HIVIiUDS cornmunity. 1was particularly reminded of my role in CO-creatingthe data in the following exchange:
INTERVIEWER: So did 1hear you nght when you said you will never go bgkto- - -
pppppppppppppp------work? That it is not a realistic option?
CHRIS: It's not realistic. That's probably not what you want to heu.
INTERVIEWER: Why do you Say that it's probably not what 1want to hear?
CHRIS: Well, 1would think this research you would, the intention would be to heip people go back to work if they want to. That would be the intention I thought you might have. Telling the stories.
Mer reading each trauscnpt, I imniediately wrote and titied the "story" told by each participant. Throughout this readhg, I "listened" for not only plot development and characters, but recurrent images and metaphors. 1dso looked for contradictions in the stones suggesting points of interest. This strategy enabled me to move beyond rny expectations to "hear" new, and sometimes surprising, themes emerging.
for the voice of 661 9' ,
This strategy is taken directly fiom Mauthner and Doucet (1998) who adapted thek data malysis strategies fIom the work of Brown and Gilligan (Brown & Gilligan,
1992). In this reading of the transcripts, attention was focused on how the participant thinks about hiderself. Participants' use of "I" venus "we" or 'leu" demonstrates different perceptions about hiderself. The use of 'T', for instance, indicates the individual voicing hisher sense of agency, whereas a sudden shifi to "you" often represents an area of struggle. This strategy offers the researcher the opportunity to appreciate the bamulti-layeredvoices" of the participants in order to discover "how she speaks for herselfbefore we speak for her" (Brown & Gilligan, 1992, p.27-28).
. . . . Placing people wlthUi sociopollhcal context~,
This strategy is also taken fkom Mauthner and Doucet (1998). In this reading, participants' accounts are placed within bmader sociopolitical contexts. Narratives are explored to assess whether they refl ect dominant, normative conceptions. Transcripts are read for words like "should", "ought", "right" and "wrong". Fuaher, how the participant articulates the relationship between him/herself and structural forces reveals whether he/she views the issue as personal or public (Mauthner & Doucet, 1998).
The Process Lead
Throughout the interviews, during transcription, and upon readings, broad themes began to emerge, such as self-esteem, identiv, stigma, control, "readiness to return to work", and remto work as "a dilemma". Questions were added to the later interviews in order to explore these concepts Mer. As themes came into focus, I read related theory in order to explore different ways of thinking about these results. Meanwhile, the narratives were continually revisited to ensure that my new ideas were directly evidenced in the data and to merdevelop the concepts.
Throughout this process, one overarching theme crystallized: the struggle between influences to return to work and influences to not remto work. These influences appeared to originate at the societal ievel, prompting a more structural analysis than the psychological approach assumed in most of the literature to date. This thinking Ied to the
"sick role" concept (Parsons, 1951) as an analyticd tool for Merunderstanding this dilemma from a structural perspective.
Further analysis also revealed the notion of "identity" as a recwrhg concept in the narratives which appeared to be related to the stniggle over returning to work or not.
This discovery prompted an exarnination of the identity and chronic illness Literature. In p articular, hierarchical (Charmaz, 19 87) and pendular (Yoshida, 1993) conceptualizations of identity reconstniction in chronic illness were examined The "hierarchy of identities" mode1 was found to best infonn andysis of the data. These results will now be discussed
in the next chapter. Chapter 4
Results
Data collection resulted in thirteen nch and diverse stories about the experience of considering retuming to work. Within these stories, several major themes have emerged.
First, two dominant and oppositional perspectives regarding rehiming to work were represented in the participants' narratives. The first perspective is that people living with
KWAIDS "shou1d not return to work". This perspective denves f?om the KiV/AIDS community and is predicated on the assumption that retuming to work presents too great a risk to an individual's physical, social and financial well-being.
The second perspective is that "people should work"; that is, people have a social responsibility to work in order to contribute to society. These social perspectives do not simply coexist in the narratives. Rather, a wealth of evidence demonstrates that the participants wrestle with these oppositional views.
Aiongside these themes related to dominant social discourses, a different theme has emerged: identity reconstmction. The concept of identity is centrai to the participants ' discussions about retuming to work. Furthennore, the transi tory nature of the identities is highlighted as the participants reconstruct how they see thernselves.
This chapter will btprovide evidence that two dominant views regarding retuming to work are represented in the participants' narratives, and then will demonstrate how participants wrestle with these coexisting oppositional perspectives.
The discussion wiU then address the theme of identity. Evidence wilI demonstrate the link between work and identity for the participants and the transitory nature of these identities.
e Theme of ClDo Not Return to Work 9,
One dominant perspective is "do not retum to work". The assumption underlying this perspective is that rehiniing to work is an extremely risb decision that may compromise an individual's physical, social and hancial well-being. One source of this perspective is HIVIAIDS senrice organizations. Thus, relationships that the participants hold with the HIV/AIDS community will be discussed in order to demonstrate their access to this dominant perspective. Evidence will then be provided to demonstrate that the public "do not remto work" perspective has been adopted and is articulated as a pnvate expenence in the narratives of the participants. Finally, the role that health care professionals play in reinforcing this message will be discussed.
Links to the HTV/AIDS CQSnrnunity
This section will demonstrate that the participants have links to HIV/AIDS service organizations and thus access to the "do not retum to work" perspective. All participants except for one descnbed direct personal links to WIAIDS service organizations and the broader HIVfAIDS community. Approximately half of the participants became aware of this study by reading a posting at an HIV/AIDS service organization. Nine of the participants volunteered at HIV/AIDS service organizations in various capacities; for instance, Joanne cut hair and Ian worked in the food bank (Note that ail aames have been changed to protect confïdentiality.) Several people attended a seminar on remto work issues. Hank reports, "1 attended that meeting because I wanted to explore that option in my head". Four of the participants had met with the Benefits Counsellor at the Toronto People with AIDS
Foundation who provides advice on navigating the insurance system. Others attended support groups that dealt with issues related to "re-engaging in life". Andrew reports:
1did the "What Now?" and then the ''Lving with HrV" (support groups). I've
made some great fiiends through that. Having met people there, I went to a
weekend workshop on "Intemalized Homophobia" and met some people there,
people who were not involved in the "hsitively Social" group.. . hdrew also perceives support fiom an htemet "HNand AIDS chat room" which he visits almost daily.
These links with HIV/AIDS service organizations and the larger HIV/AIDS comunity demonstrate that ample opportunity exists for dominant perspectives to be comunicated and reinforced.
99 tions.. (6 T ShouId Not Retum to Work
This section will illustrate the ways in which the public perception of "do not remto work" has been intemalued and reproduced in the pnvate narratives of the participants. The power of social expectations within the WIV/AIDS community is epitomized by Chris' comment on "social success": 'Wo, I don't buy into them [social expectations], but 1am aEected by them. 1am quite isolated because 1can't, 1don? compete." With respect to return to work, the "don't do it" perspective is represented in various ways. In several cases, the jargon used by participants is consistent with the
HIVIAIDS seMce organization voice. For instance, Ian refers to '4he barrien to return to work"; Kevin discusses "risk". Upon being asked about his concem regarding rehunuig to work, Andrew describes a List of "barriers" that bear strkhg resemblance to the HIV/AIDS service organization warnings:
Certainly one of the big things is not being able to do my job the way I used to. 1
used to work long hours, 1was good at what I did.. .and uhh, if 1go back now it's
going to be different because 1 get tired so easily. And there's also the thing where
this week 1had five medical appointments, so I'd need time off for those.. .I'm
also afiaid of going back and gethg sick again and of not being able to get back
on LTD...and they [his colleagues] haven't figured out that I'm HIV positive and
I'm gay, umm so there's that aspect of it.. .but the nimours are already out there
because of the symptoms I've had. ..and now I've accepted the fact that there's
going to be down days.. .people will ask me what's wrong and 1can't really tell
them. it's just that 1feel lousy and those things happen. 1don't know how it
would be at work. The other big problern is that 1 have diarrhea nom my
nelhavir [one of the pmtease inhibitors] and in the mornings I would have
problems driving to work.. .and 1know stress is a big factor, that is a concem for
me...
IronicaUy, Andrew Iater contradicts himself by revealing a perspective that diBen hmthe HIV/AIDS service organization discome that he so readily offered at the start of the interview. He "confesses" that his greatest concern is actuaily pride and fear of
The job 1do nght now, I'm in charge of a store. If you can't do that full-tirne,
you can't be a store director. You can't be a part-the store director. 1guess
some of it is pride as weil.. .there's a lot of responsibility there and 1do not want
to be a part-the part of that.
The impact of the HIV/AIDS community perspective is ofien implicit in the narratives. For instance, consider Zack's responses:
Interviewer: Did the iUDS service organization literature influence your
thinking?
Zack: No, it didn't play any role at all. In fact, I saw the literature, 1 took it
home, 1 thought, "Yawn,boring."
Interviewer: It wasn't for you?
Zack: Well, I mean, 1have already thought out these things.
In denying that the literature influenced his perspective, Zack actually confinned that he indeed sought and read the literature. Further, his comment, "Yawn, boring", suggests that it contains a rhetonc with which he is already farniliar. At the end of the interview, Zack offen a contradiction that reinforces this point: ''1 fin& actualîy, 1hd the literature at ACT not very good. 1 fuid they talk in a lot of generalities. 1 find when you read it you think, 'Oh yeah, I'd thought of that'. That's why I didn't read it."
In other cases, the link between public and private perspectives is more explicit.
For instance, Ian says, "1 spoke with someone [the Benefits Counselior] at PWA and she said, 'Oh be carefid! "' Or Kevin's comment: In fact the wornan at HALCO w/AIDS Legal Clinic of Ontario] warned me.
She said they're [the provincial govemment] going to tell you you have to leave
ODSP [Ontario Disability Support Program] and go ont0 Trillium, but she wamed
me that you don't have to do that.
Or Andrew's comment:
''1 don? trust the insurance companies, but 1don? know what they ever did to
me.. .I know other guys in my support group have had problems with their
insurance companies.. .a lot of it is mours. There's not a lot of trust there."
There is another strategy for uncove~gthe public voice within private narratives.
Dominant themes may be revealed by focushg on each participant's use of "I" venus
"yod' in describing hisher experience. Use of "I" suggests a pnvate account, whereas a shift to "you" implies depersonalization of the issue suggesting a more public or social nature (Mauthner & Doucet, 1998). In the instance of return to work, shiftùig to ''you" represents articulation of a dominant social perspective. For instance, Ian voices the
HIV/AIDS service organization perspective on a policy deemed unfair-.
Ian: I'd like to go back to work, but there are too many barriers in the way, like
ODSP. If1 go back to work, 1lose the ODSP dmg coverage. I'm on FBA
Family Benefits Assistance Program] so if I get sick again, 1have to go meet the
new FBA requirements again, not the new ODSP requirements. New ODSP
doesn't apply to people who were on FBA before.
InteMewer: You mean you were grandfathered in?
Ian: Yeah, you're grandfathered in, but you actuaily lose rights ifyou're tryhg
to go back on. If you're aew on ODSP and you develop a feu of having other workers see you taking your pills, you can leave the job and go on the ODSP. If
you're grandfathered hmFBA, that won't work. You have to have similar
reasons as the reasons you went on FBA in the htplace. So it's tricky.
An example fiom Doug's narrative illustrates how his personal fear of disclosure of his HIV serostatus in the workplace is fiamed in the social voice:
And the other thing that 1really worry about too, and it's a different Stream, umm
AIDS phobia, homophobia in the kind of work place 1left wasn't the most
educated about issues and the fear of going back, people with no respect, wanting
to know why you were off or if they fïnd out anythmg, and you have to be very
closed and secretive about who you are, where you came Born, why you were
gone, those kinds of things, and if people find out you know you have ADS,uh
oh.
Finaliy, considering the assumption that HIV/AIDS service organizations are the source of the "do not remto work" perspective, there is also value in exploring the narrative of the one participant, Lara, who had no connection with the HIV/AIDS community. hvestigating Lads narrative reveals a conspicuous absence of any evidence of the "do not retum to work" perspective relative to al1 other narratives.
These examples illustrate how the "do not retm to work" perspective has been articulated in the participants' narratives. An argument has been made that the source of this message is HIV/AIDS service orgatzizations. It may also be argued, however, that there is another source of iduence reinforcing this perspective: health care professionals specializing in HIV/AIDS. . . e Role of Health Care Profess n Delivenng th
Many participants' narratives illustrate how members of the health care community have powemilly reinforced the "do not return to work" perspective. For
Zack, the decision to leave work in the fhtplace was initiated by his physician. Bob discusses how "one" negotiates the decision to return to work: "There is a lot of factoring you have to discuss with your physician to see if your numben, T-cells and viral load, are stmng enough to support a job." Later in the interview, when asked if anyone was telling him not to go back to work Bob replied, "Yeah, rny doctor, he was very very apprehensive."
Buoyed by the optimism of the new dmgs, Ed raised the prospect of retuming to work with his physician. He comments on his doctorysresponse, "Dr. [narne] kept me very cautious. It was like let's wait and see.. A's better to leave well enough alone.. .and he wamed me about some issues, like don? jurnp back in."
But not al1 participants had this experience. Greg reported, "1 mentioned it
[returning to work] to my doctor and she doesn't think it's a big deal." Further, Doug believes that some health care professionals %ke a namw perspective", viewing their job as "to keep people working and paying taxes". He fuaher articulates his perception of physician attitudes: "We give you medicine, we get you well, you should be working."
These contrasting comments point to the idea that it is health care professionals who specialize in HIV/AIDS who are advocates of the "do not retum to work" perspective. When asked about his decision to not return to the worHorce, Zack rcpiied:
1 think my CEW] doctor is my biggest support. Dr.[name]. 1 thllik he's the
biggest support that makes me reluctant to go back to work. 1cm be alI cheerfui and 1'11 see other doctors who Say, "Oh I'U support you whatever you choose,"
but he always put his foot down, you know?
In Doug's case, his decision to change to a primary care physician speciaiizing in
HIV/AIDS was based on the issue of work: "My primary care physician was reluctant to help me qualiS [for LTD]. ..so 1changed to a doctor who saw the value [of this decision]."
Ed cornments on the physician that he had when he fkst lefi work: "My doctor agreed with me.. .that if you have a FTD] program that's decent.. .then why plug away at a job that's very hard on your body.. .bat doctor passed away ftorn AlDS himself'."
Summarv
In summary, "do not remto work" is a dominant perspective in the HIV/AIDS community. One source of this perspective is the message popularized by HIV/AIDS service organizations that renimiog to work is a highly nsky decision. Evidence was offered to demonstrate that the participants are lhked to HIVIAIDS service organizations and the broader KIV/AIDS community, and therefore have the potential to be infiuenced by this dominant perspective. The narratives were then explored for both implicit and explicit examples of the "do not remto work" perspective. Finaiiy, the role of health care professionals in reinforcing this theme was discussed, concluding that physicians specializing in HIVIAIDS play an active role in advocating this view. The following section will address a view that opposes the "do not retum to work" perspective. eme of Teode aould Work IV
In contrast to the "do not return to work" perspective, this section will discuss the view that "people should work". The Protestant work ethic is an ideology that values independence, individual responsibility and hard work (Charmaz, 1983). This perspective views people as havhg a social responsibility to work. As such, the legitimacy of not working is a contentious issue.
Due to the predictable, progressive, terminai nature of HN/AIDS until the mid-
1990's, the legitimacy of not working for this population had gone cornpletely unchallenged. Since the advent of protease inhibitors, however, HN/AIDS has increasingly been viewed as a chronic illness due to the new possibility for increased longevity. Thus, the decision to remain out of the workforce is now being called into question; the idea that "people should work" now affects the private expenences of people living with HIWADS.
This section will provide evidence that the "should be working" perspective appears consistently in the narratives of al1 but one of the participants. Participants discussed perceptions of pressure to return to work fkom extemal sources such as farnily members, insurance companies and the govenünent. Furthemore, evidence will dernonstrate the intemalized perceptions among participants of the social responsibility to
return to work,
ernal Pressure,-6 You Should Work ?*
Participants expressed perceptions of pressure to retum to work fiom a variety of
extemai sources. For several people, this pressure came hmfamily membee. For instance, Andrew commented, 'There's pressure nom my wife, uhh, she doesn't really understand, and there are little comments. She doesn't Say you should go back to work, but she's implying that 1shodd." Greg says that "it's very htrating for my family to see me not working". Greg echoes this perception of family pressure:
When I ask them [his family] why 1don? hear from them much, they Say they are
working. Okay, well, I've been hearing this for five years now and does this
mean you've been worhg constantly for five years? 1remember when 1 worked,
1still saw my family . ..it seems hostility alrnost that I'rn not working. The excuse
they have for not staying in touch with me is that they are working. And 1hear
that as, "You're not".
Acquaintances served as another source of pressure to retum to work. For instance, Zack remarked, "1 just ran into an old Enend a few weeks ago who really had it out with me about using taxpayers' dollars." Greg commented, "I've lost fnends because
1 don't work". Hank reports:
1was volunteering at [hospital] and she [a.employee] asked me, 'Were you
happy in your [former paid] work?" And it was a weird question at the tirne, and
probably she was thinking 1just don't keto work. But she at that moment was
trying to push me.
Several participants believed the pressure was even stronger because they appeared well. Ed cornments, 'Teopie wouid see me and think, 'Weii he looks perfectly he. Why isn't he at work?' 1was acnially getting hassled." Or Ian's comment, "If you look healthy and you're not working, you mut be lazy." "invisible" iiiness has also been noted as a challenge to legitimacy in a sample of workers with Iow-back injuries (Tarasek
& Eakin, 1995).
Finally, pressure to remto work was reported to corne f?om institutional
sources. For instance, Ed discussed "continued hassle and irritation from his insurance
company". Bob offered the following opinion regarding the govemment, "1 think the
most predominant and the most chilling one [extemal pressure] is the provincial
govemment's attitude toward people who collect disability, the rhetonc that you almost
should be working."
Andrew described a general impression of "feeling the pressure 60m outside".
Ian echoed this sense of societal pressure in his comment about the "rights" of people
who work versus those who do not: "You're not rneant to drink if you're not working,
like, 'Look at those buggers there having a booze-up and they didn't even work for it!"'
ternalized Perce~tions.. 6' 1Should Work"
In ai1 cases, participants' reports of extemal influences to retum to work were
bmed in a negative context; that is, they described these comments as "inappropriate"
and the people making them as "unidormeci", "out of line" and "wrong". Despite these
statements, the participants also make cornments throughout the narratives that represent
the intemalized perception that they themselves should be working. For instance, almost
half of the participants raised the concept of the Protestant work ethic. Bob explains:
"For me, I've always been work ethic-oriented. I've aiways been driven in a family by
work and so to be idle.. .the bottom Line is I'm not being a productive human being." Greg expresses his unease regarding his cmeat unemployed status, "Sitting at home not doing much, how productive do you feel to society? I grew up in a family with a very strong work ethic.. .I don? want somebody giving me $700 a month to sit at home."
Others describe the perception that they should be working in order to fulfil a role for society. Doug remarks, "1 think everyone has a role to play someplace.. .youyre giving back to society". Or Zack, "You need to feel you're doing sornething worthwhile.. .nothhg replaces work." Or KeWi who has retumed to work:
It's about feeling comected again. You know, 1 enjoyed work before 1 left and 1
didn't like not working. 1worked in a health profession before and it's great to be
in that role again. 1have a role in this system.
Othen comment even more directiy on the individual's responsibility to work. In response to a question regarding good reasons for retuming to work, Lara simply answered, "Because people should work." Hank concurs: '7 think the human body is designed to work and produce things with your hands and your mind. And I think if you have work, you are useful and cm feel good."
An interesting comment arises fiom Chns that reflects his perception of the dominant social expectation that people should work:
Interviewer: So did 1hear you right when you said you wili never go back to
work? That it is not a realistic option?
Chris: It's not realistic. That's probably not what you want to hear.
InteMewer: Why do you Say you think it's probably what 1 don' t want to hear? Chris: WeU, 1would think doing this research you would, the intention would be
to help people go back to work if they want to. That would be the intention 1
thought you might have.
Based on the fact that an active effort was made by the interviewer to remain neutral on the issue of returning to work, Chris' assumption about the purpose of the research reveals the subtle influence of power in shaping his perspective on retum to work. In this surprise comment, Chris revealed to both the interviewer and himself that he even saw academia as playing a role in encouraging people to remto work, and thus, as another power structure whose expectations he was not meeting.
These cornrnents illustrate participants' perceptions that they should be contributing to society through work. Chris also offers comments suggesting that it is the weaith gained from work rather than the work itself that atlows one to conform to society's expectations:
It's a poverty issue, really. And it's not really poverty. 1 know I've had a
pnvileged life, 1 still do have a privileged life cornpared to the third world, but
within the context of this society, relative to this society, my stahis is, well, hard
to deal with at times.
And later in the interview:
Mer seven years of being on LTD [long-tenn disability], who cares if you don't
have money? 1don? have a car, 1don? bave other things that people my age
rnight, just things, credit cards, take it for ganted that anybody has these kinds of
things. Oh weîl, I guess I'm nobody, not part of that "anybody". These are the,
you know, it sounds Be, but there are the main reasons why 1would go back to work. Wealth. It's hard not to be wealthy. You die quicker in this society if
you're not wealthy. You have less fiiends if you're not wealthy.
Here, Chris descnbes how incorne gained hmworking dlows an individual to conform to societd noms.
Finally, there is evidence of intemalized perceptions of responsibilities to work within the narratives of the four participants who lefi their original workplaces voluntarily for reasons other than health. In each case, the decision to leave the workplace was predicated on three factors: unpredictable health; job insecurity; and, the opportunity to secure a pnvate disability insurance package. Al1 interviews were initiated with the question, "Can you tell me about your former job and why you decided to leave?" What is striking is the emphasis that dl four of these participants put upon justifjmg their decisions to leave the workplace. These extreme justifications were seemingly in response to the unspoken assumption that people should work if they are physically able. For instance, Bob continued to remto the original question throughout the entire course of the interview. Doug utilized the fkt third of the hour interview to explain his rationale for leaving work, commenting several tirnes, "This Fsexpianation for leaving work] is extremely complicated, that's why I'n? taking so much thne to develop this." And after thoroughly explaining the circumstances around his decision to go on long-term disability statu, Zack continued to rationalize the decision:
1 mean, 1 was in a very bad bind and made the best choice I coutd given the, 1
mean, I know people who stayed and have been laid off and that's worth nothing.
There are govemment programs and that, but nothing beats having pnvate
insurance. So I thought, and in those days, too, protease inhibitors were not around and 1thought the doctor was laying a very clear idea that 1 should just
enjoy Me while 1 had it. So taking all those factors into account, you know, it
wasn't eaçy. It was tortuous. But 1just thought it was my best option. ..You
don't know what the future holds and you make the best decision you cmat the
time.
Summarv
In summary, this section has argued that the idea that "people should work" is represented in the narratives. Participants perceive the pressure to return to work fhm a variety of extemal sources including persona1 comments fiom family and Eiends. and more generaiized perceptions fiom the government, insurance companies, and society at
large. in al1 cases, participants described these extemal perceptions as "inappropriate"
given their current situations. Despite this sentiment, however, a wealth of evidence
suggests that the participants themselves have also intemalized this perspective. As such,
"people should work" is a dominant perspective in the consideration of retuming to work
for these people living with HIV/AIDS.
ed If You Don 7 t 97.,
Evidence has now been presented to demonstrate that each of the two dominant
perspectives on rehiming to work are represented in the narratives. Because of their
oppositionai nature, however, these perspectives do not simpIy coexist. Rather,
participants wrestle with these powerfbl and contrasting influences. This section wiU provide evidence of this struggle by drawing on quotes fiom the narratives to illustrate (a) perceptions of this wrestling, (b) emotions evoked by this stmggle, (c) the shift between
Y'' and "you", (d) contradictions, and (e) metaphors.
First, participants descnbe wrestling with these oppositionai perspectives in various ways. Bob perceives himself to "still be in the consider stage". Chris perceives the return to work decision as "a constant stmggle". Chns outlines part of his dilemma as follows:
When I'rn feeling well and looking well, I'd say 1don? have that dulling and I'rn
not too skuuiy and gaunt looking, umm, and people see you're not working, ihey
really thuik you should go back. And when you're really ill, or you're just
recovering from being il1 and you look gaunt, skinny, Umm, and you Say you want
tu go back to work, then they think you're way too sick to be thinking about that
sort of thing.. .so you don? get any support either way.
hdrew epitomizes the concept of wrestling with the two perspectives:
I'm sort of at a point now where I think 1 could work, but I'm not sure. There's a
lot of sort of barriers and I've heard lots of things where I shouldn't go back, so
it's redly, uh, I'rn in a quandary about what 1 should do at this point.
Secondly, several participants descnbe emotiond responses evoked by wrestling with these dominant themes. Andrew, Hank and Doug describe the contemplation of rehiming to work as "scary". Ian describes his hstration: "It's frussating because 1 know I couid make a contribution. I'rn bBghS 1have a BSc degree, 1have always been quick at learning, but 1just don? have the option [to retum to work]." Despite this seemingly settled decision to not remto work, Ian makes many references throughout the interview to how he 'kants to work" and "should be working", suggesting conflicted feehgs around this issue. Zack echoes this conflict: 'nie possibility [of returning to work] excites me and then it depresses me."
Thirdly, evidence of wrestling can also be revealed by focusing on the use Vmy" versus b~ou/youi'in describing personal perceptions in the narratives. For instance,
Hank discusses reasons for going back to work:
Hank: To, uh, have better eamhgs, to use my time in better ways, even though
I'm ushg my tirne for good things now.
Interviewer: What do you mean by 'better ways"?
Hank: Better ways, me, when you have a job, you are working at a time, at the
same time each day, just that commitment pushes you to get up earlier, to work
hard, and to cover the day in a 100% way. Being like this where I am now, 1have
options. If 1get tired, I can not work because 1 don't have any commitments, like
someone pushing me.
Throughout this comment, Hank shifis between the dominant themes, also changing his use of pronoun that implies that he is wrestling between what he perceives to be a public standard and his own personal experience. This wrestiing is aiso evident in the shifting pronouns in Doug's comment:
1actually reaily want to go back to work.. .but I'rn really womed about what you
could lose [benefits], and the other cautionary note is the psychological impact of
retuming to work.. .so I'd like to be in the most protected position where 1nin the
least risk of losing benefits. Fourthly, evidence of wrestling with the two perspectives is also revealed in contradictions that occu throughout the narratives. For instance, Andrew states, "The fact is that 1 guess I have a feeling of guilt that 1should be working". Later in the interview, however, he again reflects on whether he feels he should be worbg: ''KI was bored and woke up thinking 1 should be at work today, well 1don't".
There are even instances of contradictions within the same thought. Zack manages to weave arguments for both perspectives into his reply to a question about whether he feels content:
Yeah, I wouldn't Say I'rn unhappy. Yeah, I'd have to, I'd love to do, umm,
challenping work but I've had to work around it for years.. .I reaiize too that I'rn
alive. I've been positive for 17 years and I don't Say that too loud to some people
because they think, uggh, you know? Some of their friends died in '87, you
how? So sometimes 1 do think, "Count your blessings". I still th& about it
[returning to work], iike I'rn a human being, you know? I'd like to do well Iike
everyone else does, but the hardest part is deaiing with others that have
succeeded. People that 1have known as f?iends. People who are way ahead and 1
had every opportunity to do that and it didn7thappen. Even though in ways I have
succeeded. I've been out [of work] for five years now. It wouldn't be easy to go
back.
Finally, metaphon were prevalent throughout the narratives. This use of metaphos may represent the challenge of putthg the stmggle between perspectives into words. For instance, in order to describe the complexity of the issues involved in considering retuming to wolk, Doug says, "Whether to stay on LTD or not, I'rn trying to balance many risks, many different things and they're cornplex decisions.. .ifs not like adding up a papa of numbers.. .you have to weigh the value of each piece qualitatively."
Zack describes the issue as "a whole Pandora's box." Greg perceives that he is "caught in a Catch-22". Ed says, "You're damned if you do, damned if you don't."
Others use metaphors to describe their perception of return to work as dangerous and fragile, such as Doug's comment, "My life is like a house of cards, if you can imagine a set of dominoes." Chris views retuming to work as an insrnountable challenge: "While it's something 1would like, the obstacles in the end are just way too high. It's like, do I really want to Q to climb that mountain?"
Bob views the uncertainties related to retuming to work as an oppomuiity, stating,
"It's also the, the, the adventure of a new chapter, starting a new chapter".
Chns uses rnetaphor to first describe his sense of not belonging because he does not work, and then to characterize his acceptance of this situation:
It's just that now I'm a square peg and I'm trying to fit into a round hole. That's
just a cross 1have to bear. And 1can be very Catholic hout it and morose or 1
can be the atheist that I am about it and just think oh weii there are wone things
on the planet [than not being able to work].
Metaphors also emerged as a vehicle to express a feeling of powerlessness. Zack says, "It's a big fog out there nght now.. .youYrerohg the dice." Ed also expressed a sense of powerlessness with his two comments: "There's no rhyme and reason to it, you know?" and ". ..it can fail and it will fail, it has to fail. The Wus eventually figures out a way around the dnig". Taken in context, Ed's fht comment is pertaining to HIV/AIDS, and his second to anti-HIV drugs. 1argue, however, that these metaphors are equdly applicable to Ed's feelings about retuming to work since they are consistent with his comments throughout the inte~ew.
In summary, this section has provideci evidence that the participants privately wrestle with the oppositional public perspectives of "people should work" and "do not return to work". This smiggle has been iilusûated in many ways, including evidence of conflicting emotions evoked by wresthg, contradictions in the narratives, and the use of metaphon.
t are You and Who are YQU?';
The Theme of Identity Reconsmictioq
The preceding sections have illustrated the role that dominant social perspectives play in the expenence of people who are considering returning to work. These results are based on a reading of the narratives that considers structural innuences. Another theme emerges when focussing on the agency of the participants: identity reconstruction. This section discusses the notion of identity and illustrates the iink between identity and work that surfaces in the narratives. Finaily, the transitory nature of identity is discussed in relation to thinking about retuming to work.
As discussed in the literature review, the conceptuatization of identity in relation to the experience of chronic ilhess has received much attention. Identity may be understood as being formed through the iifelong processes of personal definition and social interaction (Charmaz, 1984; Yoshida, 1993). Charmm (1984) describes self- identity as "an emergent structure or organization as it may shif€ or change as the person reflexively interprets the identifications and images that self and others confer upon hirn or her" (p.284).
Identity is idluenced by the different decisions that people face during theu ilhesses, such as retuming to work, that affect who they are and who they become
(Charmaz, 1984). Channaz (1987) describes the concept of identity as "encornpass[ing] the penon's vision of future selves, reflecting his or her hopes, aspirations, objectives, and goals" (p.284). Thus, identity serves as a source of motivation. It is within this conceptualization of identity that the voices of the participants will be located.
Idena and Work
Identity emerged as a prevalent theme in discussions about retuniing to work.
Participants genenlly viewed work and identity as integraily linked. For instance, Lara states that <'workis an identity" and "nuning is my identity". Kevin states that "part of my self-identity was always linked to work". In discussing his view of being gay, HIV- positive and unemployed, Hank states, '?Iey, that's who I am."
Bob descnbes how work is related to his view of hunself: ?O feel like you're contnbuting in some hdof way, to me, changes your self-esteem and your self-image".
In discussing the meaning of work, Ian states, "Tt's a lot of identity for a lot of people, me included, what you are and who you are, you know?" Andrew discusses the changes in his life since becoming ili and leaving work: 'My brother told me I'm a completely different person than you used to be."
Chris comments on his Me since leavhg work due to ihess: 1 don't have a car, I don? have other things that people my age might, just things,
credit cards, taken for gnnted that anybody has these kinds of things. Oh well, 1
guess I'm nobody, not part of that anybody.
Thus, Chns demonstrates how his unemployed status is woven into his identity.
Doug describes how he thinks about the retum to work decision, articulating a vision of hopes, needs and motivations that mirron Charmaz's concept of identity:
Here's my big picture, here's how 1look at the big picnire. It's how these
decisions impact on your individual life and how we have to make optimal
decisions, you how, for yourself, your need for financial income, your need for
fulfillment, your need, your physical needs, uhh, your need to feel valuable, to
contribute to society. And al1 those things have to be balanced.
Finally, Greg reieals the tension between his current status and his identity:
". ..there are times when 1 think I'd like to be a liale more productive to society. I don? want someone giving me $700 a month to sit at home. That's not who 1am." In conclusion, these quotes fiorn the narratives illustrate the integrdly Iinked nature of work and identity of the participants.
The previous section has demonstrated the Link bebveen identity and work made by the participants. As stated eariier, identity is influenced by the decisions and challenges that individuais face when living with iUness (Chaxmaz, 1984). For the participants, the challenge of considering retuming to work appears to mirror the process of identity reconstruction. This section draws on evidence from the narratives to demonstrate the dynamic nature of these identities related to being HIV-positive and thinking about retuming to work.
Fint, Doug describes the identity transformations that have occurred since he became HIV-positive:
What happened was from 1989 on, 1 slowly started to, uhh, kind of restructure rny
iife. 1went kom thinking of long-terrn career plans and, to really preparing,
preparing to get, to get very sick and ultirnately die at a young age.. .Once 1knew,
umm, 1myself was HIV, that experience really, it, it held a powerfid grîp on
me.. .I really bought into that paradip. So that shapes you, that powerfblly
shapes you. Your whole outlook changes and every, you how, every decision
you make.
Greg echoes this sentiment: "When I tested positive six years ago, I thought 1 was going to die. That's the main scenario. You cashed in your EZRSP's and went on hoiiday". Andrew talks about his shifting identity since sickness forced him to leave the workforce one year prior: "Yeah, it's been quite an arnazing year. 1guess it could have ruined me, but instead I'm a better person. Once 1 got through Christmas, that was pretty bad [health-wise], but I just sort of suddenly changed".
Ln this quote, Ed struggles with descnbing his shifting identity and the implications for work:
1[my health] started to improve, 1 guess. And even if it was just psychological, 1
mean I di4 1don? feel immensely better than 1did before 1took the drugs. 1
mean, I don't feel like, 1mean 1do and 1 don't. 1feel, you know,there's side
effects of the drugs too. I mean, the way 1, the way my, 1hate the way, what it does to your face, lipodystrophy [a syndrome that involves hoUowing of the
cheeks]. That's depressing. But I started to feel just better enough, and positive, 1
guess, enough that 1started to think, well maybe I should try some things. Maybe
I should consider trying it [retuming to work].
Later, Ed describes his shifting motivation with respect to retuming to work in a discussion of "Wbt kind of person" he is:
1guess 1just, I'rn part content with being a little bit Iazy, but I'rn also part quite,
how do 1 describe it, I'rn a go-getter. I'rn a do-er. I'rn the kind of penon who
thinks of doing something and doesn't talk about it, just does it. I'm effective,
I'm efficient, and I started to feel me, just kind of useless.
For Hank, his shifhg identity is linked to his fear that his wonening heaith will
compromise his ability to work: "1 had an issue about the consequences of not being quite
the same as 1was before. But they [his employers and colleagues] had an image of me
that they saw, and 1am different now."
The concept of identity encompasses an individual's vision of future selves based
on goals, hopes and expectations (Charmaz, 1987). Thus, further exarnples illustrate the
transitory nature of identity by focussing on shifiing expectations regarding retuming to
work. Lam recognizes physical challenges and yet stiI1 holds high expectations of re-
entering the workforce: "I'm really considering going back to work, especidiy, I'rn
ready, mentally ready to go back so it's just my physical ability I'm worlchg on". Ed
describes his altered expectations and seKimage which led to his decision to consider
rehiming to work: "Ail of the sudden, it was Like four or six weeks after 1started the
drugs, I just woke up one morning and I felt like a whole new person". Others have Iower expectations for retunüng to work. As Chris states, 'Tm not a penon who backs domfkom hard labour or anythmg. I've done that kind of thing ail my iife. 1just ciinnot recover Like most". Later in the interview, Chris elaborates on the changes in expectations that he has for himselE
At tirnes I try not to be too hi&. 1 try not to have great expectations because it's
very disappointing when you can't make them repeatedly. . .Most people feel a
real disappointment when they can't make their plans, when they can't achieve
their goals. I can achieve hem, just on a different tirnetable.. .ifsjust, umm, I'm
not a goal-oriented person anymore.
Bob describes how his illness has lowered his expectations for reniniuig to work, ultimately altenng his identity. In this quote he highlights the sense of powerlessness he feels over his destiny:
Well, your health is really, there is a sense of feeling out of control when you
have a chronic illness that you cmonly impact so much with chernicals, holistic,
and exercise, but in effect you have this thing in your body that you cmonly
control in certain, umm, well you could corne down with something tornorrow.
Thus, identity has ernerged as an important issue in considering returning to work for the participants. Furthermore, contemplating rehiniing to work has highlighted the transitory nature of identity as participants reconstruct how they view themselves.
cou
The views that "people should work" and that "people Living with MN/AIDS should not retum to work" are internalized by the participants and articulated in the nanatives. Furthemore, participants wrestle with these opposing views as they negotiate the decision to return to work.
From a more psychologicai perspective, issues of identity are also central to the participants' discussions about returning to work. The process of contemplating rehiming to work is reflected in the participants' reconstnictions of their identities. These results will be discussed with respect to related theory in the following chapter. Chapter 5
Discussion
The narratives demonstrate that the participants are influenced by two confiicting perspectives: "people should work", and "people living with HIV/AIDS shouid not retum to work". While the participants themselves articulate this struggle, one can also turn to existing theory to understand the phenornenon. Parsons' "sick role" concept provides a structural-bctionai perspective from which to view the retum to work process.
Applying the four feahires of the "sick role" to the experience of the participants reveals a theoretical rationale for the stniggle around returning to work.
In contrast to this stnictural perspective, Charmaz' s "hierarchy of identities" provides a framework that highlights the persona1 agency of the participants. Application of this framework to the participants' experiences reveals a second theoretical understandhg for the retum to work stmggle.
This chapter will discuss these two theoretical approaches to undentandhg the remto work struggle. Finally, implications of these findings for practice, research, and theory will be discussed.
Considering retuming to work within the structural-fiinctiond perspective of the sick role facilitates fuaher understanding about why the participants wrestle with this decision. This fkimework views being sick as a social role with a set of four normative expectations. These four features are considered to be behavioural prescriptions that serve to maintain social order.
Ptior to the advent of protease inhibitors, people living with HIV/AIDS assumed the sick role unproblematically; that is, people were not expected to get better and, therefore, were exempt fkom normal social roles. Since the development of combination therapies and the associated Mprovements in health, the Legitimacy of not working has been called into question. Taking on the sick role may be equated with not working; convenely, rehlming to work rnay be viewed as leaving the sick role. As such, the four feanires of the sick role concept rnay be applied to the experience of the participants to further explain the struggle related to the decision of rehuning to work.
The normative expectations of the sick role mut be Eulfilled in order to remain exempt from working and fkee of blame for being dependent on social support. The firJt three sick role features explain that the individual mut view the sick condition as undesirable in order to receive this exemption from responsibility for sickness and social roles such as working. He or she must want to get better, and thus want to remto work.
Al1 participants adhere to this behavioural prescription as evidenced by their rnany comments about "not liking not working" and "wisishing that they could retum to work".
The fourth feahire of the sick role, however, dernands that people must comply with the advice of physicians. Within this structural-functiond hework, the physician is viewed as an agent of social control, a gatekeeper who functions to remweli people to the workforce to restore social order. Heaith care professionals specializing in
HN/AIDS, however, advised the participants to remain out of the workforce, thus creating an expectation for the patient that contradicts the expectation of the htthree sick role features.
Therefore, while the normaiive expectaîions of the sick role concept demand îhat
individuals desire to return to work, the fourth feature of this framework demands that the sick person complies with medical advice. In the case of the participants, these sick role
expectations are contradictory and ineconcilable, thus providing a theoretical explanation
for the stmggle that exists in the remto work experience.
. . 99 Usine Cw7 s 66Hierarchv . of Identities to Undentande Struegle
The concept of identity is also usehl in understanding the expenence of
considering returning to work for people living with HIV/AIDS. In particular, identity
reconstruction emerged as a recuming theme within the narratives. Chamiaz's "hierarchy
of identities" provides a conceptualization of identity reconstruction that Mer
illuminates the stniggle faced by the participants in contemplating returning to work.
The "hierarchy of identities" conceptuaiizes four "preferred identities" assumed
by people who are chronically il1 as they negotiate what it means to live with their
illnesses. In descending order, these four preferred identities are: the "supernormal
social identity"; the "restored self"; the "contingent personal identity"; and, the "salvaged
self '. lndividuals choose these identities based on reconsidered assumptions, hopes and
desires juxtaposed with the expectations and definitions of their specific conditions.
Thus, these preferred identities reflect personal goals including participation in the
workforce. Deciding to remto work represents ascent of the hierarchy, whereas deciding not to remto work represents the maintenance of a current preferred identity level.
Thus, examining the conditions for shifting identity levels provides insight into the struggle that people may experience in considering returning to work.
The preferred identity levels provide one way to conceptuaiize the link between identity and work that emerged in the interviews; that is, there is evidence within the narratives to demonstrate that each of the participants could be considered to be assuming one of the three lower identities. Considering the link between identity level and work, individuals assuming "a salvaged self' are no longer working, but are now attempting to maintain a positive and vaiued aspect of their former selves in the face of debilitating illness and gowing physical dependence. hdividuals assuming "contingent personal identities" view retunllng to the workforce as a goal that is hypotheticdly possible but unlikely due to possible Merillness. lndividuals assuming "restored selves" anticipate, or have undertaken, a return to pre-ilhess identity that includes returning to the workforce.
Thus, while Chmaz primarily descnbes descent down the identity hierarchy as hedth statu worsenç, ascent up the hierarchy parailels improving hedth and returning to work. As such, examining the conditions for shifting levels in the hierarchy with respect to the expenences of the participants provides Merinsight into their struggle over the decision to remto work. In particular, the examination of conditions for choosing identity Ievels highlights five issues that theoreticaliy explain this struggle. *. . . Condihons for ShifhetityLe vels
First, Charmaz states that people aim for identity levels in an effort to lead
"normal" lives and to avoid stigma Both of these concepts are problematic for people living with HIV/AIDS. Many participants commented on the shifting expectation of what it rneans to live with HN/AIDS;that is, what is 'homai". For instance, the optimism of new combination therapies is contrasted with their lack of durability and the potentid for senous side effects. As such, "nomai" can mean anythmg fkom restored health to illness and death depending on the individual's expenence with the new drugs.
Thus, a conceptual tension exists for participants in selecting an identity level which is congruent with the nom. This ambiguity, in tum, reflects a stniggle between retuming to work or not.
A second goal of choosing an identity level is to avoid stigma. Rehiming to work, and thus ascending the hierarchy, typically represents minimizing the stigma associated with being ill. The participants, however, describe an increased potentiai for stigma associated with reniniing to work. In particular, participants fear the stigma associateci with disclosure of HIV serostatus that will likely occur if they retum to the workplace. This concem stems nom the issue of how to respond to questions about the multi-year gap in resumes, the multiple medications being consumed throughout the day, the regular medical appointments, and/or the change in physical appearance expenenced by many people on protease inhibitors. Furthemore, in many cases, the fear of stigma related to disclosure of HIV serostatus is compounded by the fear of disclosure of sexual orientation that may result as a consequence of the first. Thus, while Channaz describes avoidance of stigma as a factor that motivates people to select a higher identity Ievel, the participants are also influenced by stigma to resist choosing a higher level. Thus, another theoretical tension exists regarding the decision to retm to work.
'Degree of ihess" is another condition for choosing an identity level; that is, the worse the ilhess, the more likely an individual is to descend the hierarchy. A third contradiction is revealed here. Charmaz presents the concept of "degree of illness" rather unproblematicaiIy. In discussing their ilhesses, however, many participants descnbed the expenence of feeling well but receiving laboratory results which demonstrated immunolopical deteriorations, or vice versa. Participants descnbed confusion and hstration about having CD4+ counts and viral loads (commonly used measures of disease progression) that did not reflect their subjective experiences of weliness or illness. Thus, in the case of these people living with HIV/AIDS, the role of "degree of illness" in choosing an identity level presents a conceptual stniggle. The confusion over this condition for changing identity levels directly reflects the confusion around the decision to remto work.
Fourthly, another factor related to degree of illness is the incongniency between how well a person may look versus how well that person may feel. Participants descnbed hstration associated with expectations fiom other people regardhg returning to work when these expectations were based on appearance rather than subjective health status. ludgments based on appearance are particularly problernatic since side efTects fiom new combination therapies ofien Iead to tnincai weight gain rather than the pre-protease image of wasted chest and abdominal regions. These side effects also cause the loss of a specific facial fat pad instead of the gened facial thinning typicdy associated with HIV- related wasting. Furthemore, these side effects often occur despite vast immunologicd improvements. Thus, incongruencies exist between the appearance of weilness and the subjective expenence of weiiness. As such, another reason for the remto work struggle emerges when considering the complicated nature of this condition for choosing an identity level.
Finaily, Charma2 describes one more condition for selecting an identity level as
"expectation of self '. This condition considers typical expectations based on factors such as age and education. In the case of the participants, several individuais describe the normative expectation that a person of their age and education level would typically be punuing a career. Simultaneously, however, participants viewed themselves as people who "should just be lucky to be dive" based on the length of their survival with
HN/AIDS relative to many of their peea. Thus, conflict is raised with respect to expectations of self, reflecting another theoretical explmation for the tug between whether to return to work or not.
In conclusion, retumuig to work may be equated with ascent of Chamiaz's hierarchy of prefened identities. Therefore, exploring the conditions for changing
identity Levels provides insight htto the experience of considering retuming to work. In
particular, five conceptual conflicts have been identified by applying the conditions for
shifting identity levels to the expenence of the participants. As such, the hierarchy of
identities fkmework provides a theoretical expianation for the participants' struggle over
the decision to retun to work. . rcatmns. for Practice
With respect to practice, these hdings have implications for HIV/AIDS se~ce organization workers and health care professionals specializing in HIV/AIDS who view their role as contributing to the health and well-being of people living with HTV/AIDS.
The "beware the risks" theme witbin HIVIAIDS service organization documents is an important hding with respect to the increasingly dominant perspective emerging from the HIV/AIDS community.
1do not intend to imply that these HIVIAIDS caregivers should change their "do not return to work" message. Rather, they should understand the role that they play in, and the implications of, the retum to work debate in order to minimize the potentially negative outcornes that may arise for the individuals they are trying to help. These findings and recornrnendations also have relevance to the practice of rehabilitation professionals and vocational counselors who may be involved in the return to work process of people living with HIV/.41DS.
The findings also have implications for people living with HIV/AIDS who are considering returning to work. Ulurninating the subtle forces at play within the remto work process could serve to minimize the negative consequences that may result for these individuals from wrestling with the dominant views.
. . irechom for Future Researcb
These hdings have implications for future research. With respect to the
HIV/AIDS litentue, it is important to note that the only two participants who seemed immune to this struggle happened to be the two fernales. Lara articulated the view that "people should work", but the "do not retum to work" perspective was conspicuously absent fiom her narrative, possibly due to her lack of Mage with the HIV/AIDS community. Joanne, however, is actively involved in the HIV/AIDS commuuity and yet shows no signs of either perspective in her story. As such, this analysis does not necessarily capture the experience of the two female participants, and Merresearch in this area is warranted.
Research should also consider other subgroups of people living with HIV/AIDS who may not be as engaged in the HIV/AIDS community as these participants, such as some heterosexual men. Return to work research should also consider people living with
HIV/AIDS who may have other dominant influences playing into their experiences, such
as youth, intravenous drug users, and ethnocultunl groups such as people fiom First
Nations.
This analysis also holds important lessons for retum to work literature that has
tnditionaily taken a quantitative, "outsider" approach. The concepts that have evolved
from within this analysis consider the retm to work experience fiom a dramaticaily new
perspective revealing innuences that have not been considered to date. As such, this
study flags a concem for retum to work research. These results demonstrate the
importance of establishing a conceptual foundation and caii into question the assumptions
underlying the quantification of factors deemed relevant in return to work research to
date. In particular, results of this study challenge the focus on psychological factors in
the retum to work process. Contributions*. to Theory
The goal of the type of method used in this study is to develop theory out of the lived experiences of the participants involved. Thus, the findings do not make clairns of generalizability to other samples. Rather, the analysis reveals concepts which can be applicable to other samples, settings, and situations (Conrad, 1990). The £îndings in this study offer conceptual contributions on several fionts.
First, these hdings have relevance for the literature on identity reconstruction in chronic illness. While Charmaz has explored the experience of descending the
"hierarchy of identities", the experiences of these people living with HIV/AIDS contribute to the enrichment of this conceptual hework. In particular, this study demonstrates for the httirne that reversa1 of this downward û-ajectory, or ascent of the hierarchy, is also a challenging process as people may be hesitant to assume the higher expectations associated with elevated identities.
Secondly, with respect to Parsons' "sick role", this shldy demonstrates that despite cnhcisms for its lack of utility for chronic ihesses, the sick role concept has informed the anaiysis by uncovering a dilemma at the structurai level. Taken together, these tsvo frameworks provide unique and theoreticdy diverse ways to understand the stmggle over retuming to work experienced by the participants. The sick role concept provides a structural analysis of the phenomenon, while the hierarchy of identities highlights personal agency. Together, these two theoretical approaches recognize the multiple Ievels of analysis within the narratives resulting in a more comprehensive understanding of the phenomenon under study. FinaIiy, this study ahhighlights areas for Merdevelopment of rehabilitation frameworks. Exploring the rehabilitation phenornenon of rehiming to work has demonstrated the crucial role that dominant social perspectives can play in the rehabilitation process. Rehabilitation frameworks developed to date consider a broad span of issues and yet fail to adequately conceptualize the role of structural influences withui their scope.
Furthemore, the experience of conside~grenuning to work for these participants has raised the issue of identity within the rehabiiitation process, a concept that is absent from rehabilitation fhmeworks at this time. Thus, these fïndings flag both the concept of identity and the role of structurai forces as rnissing components of rehabilitation fkmeworks, and cal1 for theoretical reflection in this area
and Concl-
in the mid-19903,a new class of adretroviral drugs called protease inhibiton dnmatically changed the experience of living with HIV/AIDS. The optimisrn of heaith gains and improved quality of iife, however, now exists in tension with uncertainties regarding the durability of the drugs and their debilitating side effects. The shiftuig medical clirnate 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 HN/AIDS.
This qualitative study has shown that the participants are infiuenced by both the dominant societal perspective that "people shouid work", and aiso the oppositional perspective that people living with HiV/AIDS "should not retum to work". The latter view appears to be dominant within the HIVMDS community and reinforced by health care professionals specializing in HtV/AIDS. Not ody do these oppositionai perspectives coexist, but there are also examples throughout the narratives illustrating how people wrestle with these dichotomous views.
Parsons' "sick role" concept provides a theoretical explanation for the results by focussing on the structural influences at play in this debate. In contrast, Chamiaz's
"hierarchy of identity" provides a conceptuakation of identity reconstruction that Mer informs the analysis. This concept of "identity" reflects individual agency, thus providing a complementary approach to the structural-functionai perspective of the sick role.
These findings have conceptuai and methodologicai implications for iiterature in the ares of WAIDS,return to work, identity, and rehabilitation. Results also inform practice and policy, and could serve to midethe negative consequences of wrestling with this decision for individuals living with HIVIAIDS who are considering retuniing to work. Re fereaces
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Research Consent Form and Idonnation Letter Appendix A
(University of Toronto letterhead)
Title: Carnidering Retum to Work: The experience of people iiving with MIV disease
Investigator: Steplianie Nixon, BHSc(PT), MSc(c) Gnduate Student, Deparment of Rehabilitation Science University of Toronto P hysiothenpist, HIV Team Weiicsley Central' Site, St Michael's Hospital 4 16-926-5053 ~4257
Supervisors: Dr. Rebecca Renwick Dr. Jack Williams
Purpose of the Research:
The prof'& of HIV disease is changing. Due to hpmvements in medicd care, some people are regsinhg hedth and conside~goptions previously unimaginable, such as retuming to the workforce. The decision to remto work, however, is compiicated by cünical, social and political questions. The purpose of this research is to explore the experience of considering retuming to work for people living with HIV disease.
Participant Characteristics
You were invited to participate in this study because: (a) you are MY+, (b) YOU have previously left the workforce, (c) you have perceived an improvemenr in health, and, (d) you have considered the idea of renirning to work or have aiready retwned to work.
Description of the Study
If you choose to participate, you wil1 be intenriewed about this topic on one occasion for 60-90 minutes. The interview wiU be conducted in person at a time and place that is convenient and conifortable for you. The interview will be tape-recordeci. if a face-ta-face interview is not feasible, a telephone inte~ewmay be conducted instead.
Participation
Participation in this midy is voluntary. ifyou choose to participate, you axe fke to withdraw at any time. Declining participation or withdraaring hmthe study wil1 in no way Unpact on present or futtm care that you receive at the Wellesley Centrai Site of St. ~Mchael'sHospital or any other setting,
Hamand Benefits
There is no risk of harm associated with panicipating in the midy. T!me are no ciirect benefits associated with participating. The resuIe of this study, however, are intended to contribute to the knowledge in tbs field for use by health care professionals, researchers and AIDS se~ce organinatiom.
Confidentiality
Confidentiality wiil be respected at al1 tirnes. No information that discloses the identity of the participant will be released or published without consent. A code number will identify participants in the transcript. Raw data will be kept under lock and key. Tapes will be destroyed when the study is cornpleted.
Signing Statement
1 acknowledge that the research procedures desrribed above have been explained to me and that any questions that I have asked have been answered to rny satisfaction. 1 have been informed of the alternatives to participation in this study, including the right not to participate and the right to withdnw at any the. 1 bow that 1 myask now, or in the future, any questions 1 have about the study or the research procedures.
1 consent to participate in this study.
Signature:
Date: (University of Toronro letterheud)
Considering Return to Work: The experience of people tiving with fEIV disease
Dear Participant:
Thank you for your interest in this study.
1 am a graduate student in the Department of Rehabilitation Science, Faculty of Medicine, at the University of Toronto. I am conducting resezuch under the supervision of Drs, Rebecca Renwick and Jack Wiiîiams.
What is this Shtdy About?
The prome of HIV disease is constantly changing. Due to improvements in medical care, some people are regaining health and considering options previously unimaginable, such as returning to the workforce. The decision to remto work, however, is complicated by clinical, social and political questions. The purpose of this research is to explore the cxperience of considering returning to work for people living with HIV disease.
Who is Invited to Participote?
People are invited to participate in this study if they meet alf of the following criteria: (a) you are W+,@) you have previously 1eA the workforce, (c) you have pcrceived an improvernent in health, and, (d) you have considercd the idca of rehtrning to work or have aiready retumed to work.
What Would 1 Have To Do?
If you choose to participate, you will be interviewed about this topic on one occasion for 60-90 minutes. The interview will be conducted in person at a tirne and place that is convenient and cornfortable for you. The interview will be tape-recordeci. Lfa face-to-face interview is not feasible, a telephone interview may be conducted inçtead,
Am 1 Free to Refuse?
Participation in this study is voluntary. If you choose to participate, you are fiee to wirhhw at any the. Choosing to decline participation or withdraw hmthe study will in no way affect present or fiiture care btyou receive at the WeUesiey Centrai Site of St. Michael's Hospital or any other sethg.
Are There hyHam or Benefits?
There is no risk of harm associated with participahg in the study. There are no direct benefits associated with participating. The resuits of this study, however, are intended to contri'bute to the knowledge in this field for use by health care professionals, researchers and ALDS seMce organimtions. What About Confidentiaiity?
Codidentiality wdi be respected at ail times. No information that disdoses the identity of the participant wiii be released or published without consent A code number will identifi, participants in the transcripts, Ali information wiU be kept under lock and key and tapes wift be desîroyed when the study is completed.
What If I Have Any Questions?
If you have any questions or would like further information, please feel fret to contact me at 416- 926-5053 ~4257or Rebecca Renwick at 416-978- 18 18, or Jack Williams at 4 16-480-4780.
Stephanie Nixon, BA(Kin), BHSc(PT) MSc(Rehabi1ita tion) Cmdidate Appendix B
Interview Guide Appendix B
s
The foiiowing questions and foilow-up probes will be used as a f'ramework for the interview:
Cari you teU me about your experience of haviug improvements in your health? Probe: What does "feeling better" mem for you?
Can you tell me about leaving your former job? Probe: What wuyour decision to Ieave work like'?
When did you start contemplating RTW? Probe: What does it feel like to be considering renuning to work?
Cm you tell me about the cMenges standing in your way?
Cm you teil me about the good reasons for going back to work?
Cm you tell me about outside influences encouraging you to retum to work?
Cm you teii me about ourside influences discounging you fiorn returning to work?
1s there anything else we have not discussed that you would Iike to add?