Living with HIV: An exploration of the work-related experiences of those living with HIV in Nova Scotia, Canada

Jacqueline Gahagan, Laurene Rehman and Larry Baxter

Abstract

Objective: To explore workplace and related experiences and perceptions of a sample of HIV-positive individuals living with HIV in Nova Scotia, Canada in order to further explicate the impact of workplace and disability policies on back to work issues.

Methods: This qualitative, exploratory study used in-depth interviews with a sample of 20 HIV-positive individuals living in Nova Scotia to contextualize work- and policy-related tensions that influence back to work decisions. Thematic analysis was conducted with the verbatim transcripts to determine the key issues influencing back to work decisions among the participants.

Results: Both personal and broader structural factors appear to contribute to the complex decision to return to work or to remain outside the paid workforce, including financial status, social support, isolation, workplace stigma and discrimination, and fear of losing work-related benefits.

Conclusions: There is a need for ongoing analyses of workplace and related policies that may inhibit or facilitate the potential to reenter the paid workforce among those living with HIV in Nova Scotia. Enhanced awareness among policy makers, employers and organizations is needed to address the tensions associated with workplace demands versus those experienced when living with HIV infection.

Introduction

With the emergence of new medications to help delay the development of full-blown AIDS among those living with HIV came the contentious and disputed reconceptualization of the disease as a long-term chronic, yet manageable illness enabling individuals to return to or continue with paid employment or education and training (Adam & Sears, 1996; Ferrier & Lavis, 2003; Husbands, 2003; Jalbert, 1998; Pierret, 2000). While the cyclic nature of the illness may allow for the reentry into the paid workforce during periods of wellness, the often-times linear, all-or-nothing approach to workplace and related income support and vocational rehabilitation policies must be addressed (Cummings, 1996; Maticka-Tyndale, Adam, & Cohen, 2002; Nixon, 2003; Shaw, Segal, Polatajko, & Harburn, 2002).

Although HIV continues to be cited in the literature as a long-term, chronic yet manageable illness, the uncertain and variable illness trajectory, along with the stigma and discrimination often experienced by people living with HIV/AIDS requires income support policies and vocational rehabilitation programs to be more flexible, equitable and accessible. This is particularly the case in smaller provinces in Canada such as Nova Scotia where HIV-related services and programs are often centrally located in the largest urban centre and thereby less accessible to those in more rural areas. With a total population of less than one million and where over half the population live outside the Halifax regional municipality (Statistics Canada, 2003), Nova Scotia faces a number of unique challenges in addressing the needs of those living with HIV/AIDS. In addition, the relatively low numbers of both HIV positive test results and AIDS cases in Nova Scotia as compared to the rest of Canada (Public Health Agency of Canada, 2004) presents challenges in sustaining HIV/AIDS awareness efforts in all sectors, including income support policies and vocational rehabilitation programming. Without addressing these various challenges we will likely to see a continued and unresolved tension between the reality of living with HIV and the policies that are meant to provide needed income support for those in times of unemployment (Brook, & Klosinski, 1999). These tensions have not been previously examined using a qualitative, exploratory methodology with HIV positive individuals living and working in Nova Scotia, Canada.

The purpose of this research was therefore to explore in an open-ended, qualitative, conversational format the key question of how a sample of people living with HIV/AIDS in Nova Scotia, Canada perceived barriers to remaining in or returning to the paid workplace, school or disability pension. This paper provides an opportunity for the lived experiences of a sample of HIV positive individuals living in Nova Scotia to be heard in relation to these critical issues. This study grew out of the recognition that increasing numbers of people with HIV are living longer lives due, in part, to the advent of highly active anti-retroviral therapies (HAART) and that this may in turn call into question current approaches to disability policies in Canada. Further, as stated in the Strategic Directions of the Nova Scotia Strategy on HIV/AIDS (2003), there is an urgent need to "build a coordinated approach to care, treatment, and support services, along with an examination of the guidelines for insurance coverage of HIV/AIDS cases including illness/disability benefit policies and programs, third party insurance coverage, and the appeal process" (p.24).

Methods

Following approval of the research protocol by the Dalhousie University ethics review board, qualitative, open-ended, in-depth interviews were conducted with a sample of 20 HIV-positive individuals living in Nova Scotia, Canada to explore their experiences with back to work issues and associated vocational rehabilitation and disability policies. The use of open-ended, qualitative, exploratory methods rather than closed-ended quantitative methods were seen as most appropriate to help guide our understanding of the complex contextual issues associated with both the perceptions and lived experiences of a sample of individuals living with HIV/AIDS. The purpose of such qualitative approaches is not to generalize to the broader population of people living with HIV/AIDS in Nova Scotia or in Canada more broadly, but rather to provide contextual data from a sample of individuals with HIV relative to their workplace related experiences. As such, the only quantitative data gathered for this study were in the form of a brief demographic survey (Refer to Table II for Demographic Characteristics).

Individuals were referred to the study through a variety of community-based AIDS Service Organizations (ASOs) and sexual health agencies throughout Nova Scotia that agreed to post and circulate a notice about the study in their offices. A convenience sampling strategy with specific selection criteria was used for this study. Interested individuals were asked to call the principal investigator to determine eligibility and to schedule an interview at a time and location most convenient to the participant (Refer to Table I for Inclusion Criteria). The selection criteria were based on the need to ensure that all participants had previous or current paid workforce experience in order to elicit their responses to interview questions which were focused on the potential disconnects between disability policies and practices. Approximately half of the interviews took place in the office of the principal investigator, while the remainder of the interviews took place in a private meeting room in a local AIDS Service Organization (ASO).

All interviews were audio-taped with the permission of the participants and were transcribed verbatim and lasted, on average, 1.5 hours. The data were managed using QSR NUD*IST and were analyzed inductively by exploring emergent themes, patterns, and categories (Patton, 2002). This analytic approach involved a constant search for negative or contradictory examples in the data in an attempt to ascertain rival explanations. In addition, an audit trail was maintained throughout the data collection and analysis processes to assist with transparency and transferability. The key emergent themes included: 1.issues related to personal factors in back to work related decisions; 2. broader structural factors that permeated the participants' accounts when describing the tensions between feeling well enough to return to work; and 3. fear regarding the perceived or actual loss of disability pension benefits. The following section offers an overview of each of these emergent themes and related sub-themes based on the participants' accounts.

Table I Inclusion Criteria

Table II Demographic Characteristics of Participants

Results

Of the 20 HIV-positive individuals who participated in the in-depth interviews, 13 were in the age range of 30 to 39 years, 8 were female, 12 were single, 10 self-identified as gay males and 17 of the participants self-identified as white or Caucasian. Although the results of this study cannot be generalized to the entire HIV-positive community in Nova Scotia, the results can be used to assist with reinvigorating discussions on specific vocational rehabilitation and income support programming or policy directions. This is particularly timely given the release of the Nova Scotia Strategy on HIV/AIDS and the resultant development of a series of recommendations for strategic directions related to HIV prevention, care, treatment and support in the province.

Theme 1: Personal factors

A variety of personal factors impacted the decision to reenter the paid workforce, including level of education, stress, financial status, openness about one's HIV status, medication side effects, social support and isolation. These personal factors in the decision to return to work were filtered through a complex web of psychosocial issues, including the receptivity of those in the workplace to HIV-related issues. As this participant suggested:

I realize that within the workplace, as an HIV[positive] person, one still has to start realizing that the stress has got to be reduced for health reasons... and I know that and it's a precaution that I have to be really aware of in the future. And also being HIV[positive] and keeping it a secret. All that affects the work environment, it really does.

All participants expressed concern about the perceived or actual personal and financial ramifications of being open about one's HIV status in the workplace and whether or not this would impact on their treatment in the workplace. As indicated by these participants:

In terms of the way people are being treated by employers or whatever and I also think that if someone is found out to be HIV positive that they are going to lose their job or whatever, or they're not going to be considered for a promotion or position because of their health.

The way [workplaces] are set up, it actually prevents people from actually going back... and a lot of that is purely financial, making school affordable or making living affordable, or going back to a job. Of course there are issues about people going back to work and having to still deal with the side effects of drugs or being out to their employer about their health, there are real concerns about that so I think we really need to do some work around that.

Factors such as type of work experience and medication side effects influenced the decision to return to work or school in a variety of ways. Most participants spoke of the need to negotiate or balance the type of work they were previously doing, the potential remuneration for paid work, as well as medication side effects. The stress associated with this "juggling act" meant the decision to return to either work or school was not simply a matter of eligibility or health status. As well, the concern about being "outed" as HIV-positive by coworkers as a result of questioning medication taking patterns or because the medications might be connected to the need for time off was seen as problematic for participants. The following participant explained how this caused her to leave the paid work force.

I was on my feet all the time and by the end of the day I'm exhausted and tired, I go home, I go to sleep tired, I wake up tired. I mean hiding it all [HIV status and medications] just didn't work out well for me, I just decided to give up so this time I'm in the process of applying for long term disability which I don't know how you do it, it looks very, very difficult to get.

In addition, the side effects of the medications often produced negative health outcomes so that even during time of "good health," most participants experienced a variety of challenges. These challenges ranged from hiding medications, to skipping doses while at work, to taking time away from work to manage the impact of new treatment regimens.

Another personal factor noted by participants was the level and type of social support networks they accessed or with which they connected. These networks contributed to feelings of connectedness for most participants; however in some cases they exacerbated the sense of isolation. For those participants with partners and networks of close friends, social support was seen as an overriding factor in contributing to health, beyond that of the workplace. As the following participant explained:

I would say my partner and friends are probably the best social support network that I have so... they are very important to me and I attribute my lasting health to that, to having people around who care and knowing that if something should happen to me, that I will be cared for.

For others, social networks were saturated with additional tensions beyond those related to the workplace, and were regarded in some cases as confounding personal with work related boundaries. This included situations where, due to the relatively small size of the gay community in Nova Scotia, most gay individuals' sense of confidentiality about their HIV status was eroded by the overlap between the workplace setting and the broader social community. As this participant argued:

You live with HIV and the people you meet in the gay community are... existing friends that... I've had long term friends, you know 20 years, 18 years, and once I became HIV[positive], you know, it's fine to your face, but it's a different story when you're not there.

As indicated by this participant, not all social networks created positive spaces for people living with HIV, rather, most gay male participants spoke of an underlying tension that contributed to their sense of isolation. On the other hand, the desire to escape this sense of isolation and boredom, to connect with others, and feel empowered about one's life was seen as a significant personal or psychosocial factor that influenced most participants' decision to return to work or school. This "pull" to motivate people to return to the paid work force was particularly evident among those who had been diagnosed prior to the release of HAART (Highly Active Anti-Retroviral Therapy) medications and those who, because of the limited treatment options at the time of their diagnosis, were often encouraged to leave the paid workplace and to live on disability pension. Most participants spoke of the heightened sense of productivity and self-satisfaction that was associated with paid employment.

At one time I thought that [my HIV diagnosis] would stop me from doing things. I would be afraid to do things because of it... but now I'm out there doing it... [work] gives me something... I feel productive and I am contributing to society and I feel good about myself.

Theme 2: Structural Factors

All participants identified several external or structural factors that affected reentry into the paid work force. These primarily revolved around concerns about perceived or actual provincial government disability pension restrictions and drug card coverage and related medical costs. One of these factors included paying out of pocket expenses, in this case associated with filling prescriptions. As noted by these participants:

... the dispensing fees for prescriptions. That pisses me off. You know people trying to scrape by on $700 a month for everything are then expected to pay a $9 dispensing fee and people are on a minimum of three drugs, so there you have $27 out of pocket for something the province covers...

The [infectious disease] clinic was absorbing the cost of those dispensing fees for people on social assistance, but with budget cuts this, that and the other thing, they were no longer able to do that so now everybody is on their own across the board [regardless of income].

Although HAART medications are covered by the provincial government, for those without an existing drug plan, ensuring the cost of other medications are covered became an overriding concern in balancing the perceived utility of returning to work with the obvious disadvantages. That is, there was some uncertainty among most participants about the level of drug coverage entitlement they could expect if uninsured and in need of HAART. As well, additional drugs to offset side effects were often not included and this posed an additional financial burden and disincentive to return to the paid workforce as noted by the following participant:

Now I don't know how I am going to go back to work. I'm going to school but when I go to school my drug card is in place. Okay, apart from the cocktail [HAART], my medication for side effects, etc. could go over $2,000 a month that's not covered... when we worked it out, I had to get a job that will pay $55,000 a year in order for me to go back to work.

Essentially the cost of some medications, the current coverage policies and the need to pay for dispensing fees as well as other out of pocket expenses meant returning to work was not always perceived as affordable, regardless of the willingness of the individual. For some, the idea of returning to work was described as "working for meds" rather than for the sake of an improved sense financial independence.

And basically if you get out in the work force, the way it is now... you'd be basically working for your bloody meds, you know, unless you're in a big corporation or whatever... but you know a normal person that can't get into a corporation that does have coverage, you're pretty much screwed, you know, where do you go, what do you do?

Work place and employer characteristics contributed further to the differential in experiences. For some, the workplace was seen as "HIV friendly" while for others the potential for additional HIV related stigma and discrimination was perceived as stifling their efforts to return to work. The following individual worked in an organization regarded as having a positive and open atmosphere:

Well I'm fortunate to be working for an organization that understands. They are fully aware that I am living with HIV and they understand and they accommodate this like that. In the past it wasn't very easy because I wasn't out about it to the employer, so I basically had to either watch my sick days and allot them accordingly or just go to work not feeling well.

The potential to be discriminated against in the workplace based on one's HIV status was a concern articulated by all participants. Whether this was related to overt or covert workplace discrimination, many participants lived with this concern. As suggested by the following observation, the perception that hiring processes are biased against HIV-positive applicants is problematic.

We are talking about... issues that are related to discrimination... and they are so subtle, you don't know why you were not accepted for a position. One is because of your age... the other could be because they found out...you are HIV[positive]... So all those issues are in the background and none of them can be totally pinpointed because you are still unemployed.

Theme 3: Fear of Loss

The fear about losing paid employment and the benefits associated with paid employment was expressed by all participants. In particular, the double-edged nature of trying to maintain paid employment in the face of periods of ill health without disclosing personal health information was seen as problematic. For example, workplace health plans were perceived as stigmatizing as they often had an impact on the degree of fear or, alternatively, the level of openness and comfort an individual felt in discussing their HIV status. Participants expressed the need for careful consideration in balancing the potential benefits of disclosing their HIV status with the potential, and often times unknown, level of backlash within the workplace, including the fear of losing one's job.

Most participants expressed concern and fear about losing a job without knowing for certain if such a decision was connected to the disclosure of their HIV status. As well, having to complete workplace health insurance forms and medical exams caused fears about stigma and discrimination as demonstrated in the following comments:

Answering questions under the group health insurance plan, how much do you reveal and do you... if you say you are HIV[positive], you probably are not covered, I don't know... [I was] applying for a job and I'm not sure what it was, but they where asking for a medical too... and the term medical right away would send out negative vibes for me.

Workplace health plans could therefore produce considerable fear and tension for the participants rather than facilitating positive health outcomes. All participants highlighted the pressing need to carefully consider both the various personal and structural factors that may influence their experiences with paid employment or retraining and schooling. In addition, frustrations with the lack of clarity regarding disability policies, eligibility criteria, and provisions for part time work without losing benefits, were expressed by all participants. This frustration ranged from lack of access to information needed to help inform back to work decisions to the rigidity of existing government policies. This frustration is evident in the comments made by the following participants:

It would be an immense help if the government would overhaul its disability rules so that there was a gray area whereby people who are able to work could work a limited amount, say enough to support themselves, but still get the government coverage like the pharma card. I think it would do wonders for the province economically to have people actively contributing to the tax base as well as maintaining people's self-esteem.

The way the disability system works in Nova Scotia, I mean, the way it was explained to me, is you either are disabled or you are not. You either can work, or you can't. So someone who can work 20 hours a week, make enough, thousand, fifteen hundred dollars a month to support themselves, take care of their personal needs, but can't afford to pay for thousands of dollars of drugs every month.

The loss of a sense of identity and dignity associated with unemployment status was seen as a significant issue for all participants. This meant participants moved from a sense of financial self-sufficiency prior to their diagnosis to the loss of employment and the resultant dependency on disability pension and related government supports following their diagnosis. This process often resulted in feelings of marginalization and a sense of having been removed from the productive labour force in the process of accessing income supports. As suggested by these participants:

... one of the biggest issues for me because I'm always trying to... make my life meaningful, and for a lot of people it's about their work. And even socially, when you go out and the first thing is what's your name and what do you do? And when you do nothing, you feel like nothing and you know that you are capable of doing so much more but you are not allowed, so they [disability pension policies] don't allow you that dignity...

Well I have a disability pension and I'm just... it's awful, you know, I just consumed my retirement savings... I now consider myself to be basically retired...

Discussion

The findings of this qualitative, exploratory study suggest that both complex biopsychosocial as well as broader structural and community-related factors impact the decision to remain in or reenter the paid work force. There is a need to examine the potential stigma and discrimination associated with HIV self-disclosure and whether or not workplace disclosure is in fact a "choice". As suggested by the participants' experiences, there is a need to focus on a critical examination of policies that may inhibit the potential to reenter the paid workplace. Additionally, there is a need for enhanced sensitivity and awareness among employers and organizations of the myriad of factors that serve as barriers to paid employment for people living with HIV/AIDS in Nova Scotia, Canada.

The HAART era has created even more uncertainty with regards to the work related expectations among individuals living with HIV in Nova Scotia. In particular, the distinction between being able to remain in or reenter the paid workforce and to go or remain on disability pension has become more complicated and blurred. The considerable health advances since the release of HAART in the mid-90s have created more personal life decisions for many living with HIV/AIDS and therefore the need for a more flexible approach to disability benefits and vocational rehabilitation is clearly warranted. The existing financial support and insurance systems have, for the most part, remained with an all-or-nothing tension which fails to take into account the continually evolving and fluctuating income support needs of HIV-positive individuals. Greater flexibility with respect to current policies for starting or temporality stopping disability pension or other income support programs is one such mechanism which could help address this all-or-nothing tension.

The need for greater flexibility as suggested by the results of this study parallel the consultation results (1999-2000) for the Nova Scotia Strategy on HIV and AIDS (York, 2000). This consultation process provided an opportunity for a variety of stakeholder groups to provide input into the provincial strategy in order to develop a series of recommendations to ensure the needs of Nova Scotians with HIV/AIDS are adequately met. The recommended actions in the final report (2003) stress the need for:

a) "a seamless continuum of care, treatment, and support services (including accessibility to existing and new programs) for PHAs using a case management approach", which should include support for medication needs, the recognition of medication side effects and income security programs. (# 4.1)

b) The examination and, where necessary, the development, enhancement and promotion of "supportive workplace program to cover PHAs continuing and/or returning to employment." (# 4.2)

c) An examination of "the guidelines for insurance coverage of HIV/AIDS cases including illness/disability benefits and policies and programs, third party insurance coverage and the appeal process." (# 4.7)

From a policy perspective, a more transparent and collaborative approach is needed among government support services, the workplace and employers, the insurance industry, the medical system, other chronic disease management societies and programs, and those living with HIV/AIDS. It has been argued that individuals living with HIV/AIDS should be the focus of the policies and programs designed to enhance their physical, mental and social well being rather than on the margins of isolated consultation processes which may serve to justify inflexible policies.

This collaborative approach to improving the policies, programs and procedures for workplace programs and income support for people living with HIV in Nova Scotia, Canada would be enhanced by further research focused on issues such as:

a) The interaction of stress, nutrition, exercise and physical fitness, rest/sleep with the workplace and their affects upon the health of those living with HIV/AIDS;

b) The role and implications of flexible and/or part time work in maintaining a place for those living with HIV/AIDS in the workforce, or alternatives to employment, that would reduce boredom and enhance self-esteem; and their affect upon the support benefits of individuals living with HIV/AIDS; and

c) The issues surrounding confidentiality, stigma and discrimination, and workplace support systems in relation to individuals with HIV/AIDS and having equitable access to all available benefits, resources and services.

In conclusion, we must move forward in a collective, coordinated multisectoral manner in order to adequately address the current policy-reality disconnect for those living with HIV and AIDS in Nova Scotia, Canada. Great strides can be made in addressing these gaps by increasing the connections between the HIV social and behavioural health research and the policy sectors (Moatti, & Souteyrand, 2002). The development of evidence-based standards and trends backed up with sound, multidisciplinary health research, including both qualitative and quantitative methods, will allow for the development of a more coordinated policy and research agenda to understand and address this current disconnect (Nova Scotia Advisory Commission on AIDS, 2003).

Currently, the Strategy Working Group associated with the Nova Scotia Advisory Commission on AIDS is in the process of determining specific actions and potential barriers that would affect change in the various areas of concern. This process involves both the identification of additional partners outside the HIV/AIDS field who are able to work collectively at the provincial level, as well as those who are situated at the national level and seeking to partner with Nova Scotia. This will allow for greater integration across sectors within the province and a broader national viewpoint of how current income support, disability and rehabilitation policies in Nova Scotia reflect the national standards.

And finally, additional focus on increasing the visibility of existing research expertise in the area of disability, rehabilitation, health policy and workplace issues for people living with HIV/AIDS in Atlantic Canada is warranted (Fletcher, Gahagan, & Reynolds, 2003). This will require an evolving, flexible approach to workplace and disability policies and not a static, single-minded focus on cost-containment to the possible detriment of the economic, physical, spiritual and overall social well-being of individuals living with HIV/AIDS in Nova Scotia, Canada.

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Submitted by

Jacqueline Gahagan, PhD, Laurene Rehman, PhD and Larry Baxter

Email: jacqueline.gahagan@dal.ca

International Journal of Disability, Community & Rehabilitation
Volume 5, No. 1
www.ijdcr.ca
ISSN 1703-3381