From a clinical perspective, although medicine was best positioned to help contend with disease processes, it was the rehabilitation community (e.g., physical therapists, occupational therapists, speech-language pathologists and physiatrists)  who brought expertise in dealing with the life-related consequences of the illnesses [4]. 

Furthermore,  it was rehabilitation and disablement frameworks to which scholars and activists turned for insight into how to reconceptualize HIV beyond   the   level   of   disease.  The   World   Health   Organization’s   (WHO’s)  International Classification of Impairments,  Disabilities and Handicaps (which was updated in 2001 and renamed the International Classification of Functioning, Disability and Health, or ICF) provided a framework that could highlight the challenges related to living with HIV at the level of the body structure or function (e.g.,  painful knee or congested lungs),  the level of the individual (e.g., difficulty walking or getting dressed),  and the level of involvement in life situations (e.g., difficulty with one’s job or in parenting roles) [5, 6]. This reframing provided the basis for both programming and policy advocacy. 
For instance, the Canadian Working Group on HIV and Rehabilitation (CWGHR) was founded in 1998   by   HIV   activists,  rehabilitation   professionals,  government   policy   makers   and representatives from the insurance industry to examine and respond to the emerging needs of people living with HIV in this new context. Guided by the WHO framework, the organization’s research and policy work has focused on such issues as work and employment, HIV education and mentorship for rehabilitation professionals,  and the facilitation of a prevalence study to assess the level of disablement among populations of people living with HIV [7, 8]. 

In 2005, Worthington et al advanced a conceptualization of rehabilitation in the context of HIV that was informed by these efforts and based directly on the ICF [9]. 

This HIV Rehabilitation Conceptual Framework heightens understanding of rehabilitation domains, services and issues in the context of HIV. Using the ICF, the framework outlines the multiple life domains affected by HIV and associated treatments, provides a working definition of rehabilitation in the context of HIV, and highlights the expanded role that health providers and services have in the rehabilitation of people living with HIV, including their role in enhancing their labour forces and overall social participation.  Although this framework is being taken up in certain environments in wealthy countries, it has had only limited application in resource-limited settings [10].

A new concept-  episodic disability
Along with advocacy efforts geared solely to HIV,  the CGWHR also brought together likeminded individuals and organizations from outside of the HIV world that were facing similar concerns. An early outcome of this “cross-disability” initiative was the creation of a model, which helped identify areas of shared concern across the groups and sparked the notion of “episodic disability”.  The model uses medical diagnoses as the basis for illustrating the intersection of issues related to-  HIV;  “permanent”  or static disabilities;  and “episodic” disabilities, which refer to experiences of disablement that are unpredictable and intermittent in nature. 
While there are issues shared across each sphere,  a particular affinity was discovered between HIV and other lifelong, episodic conditions. This recognition of the unpredictable nature of living with HIV has proven to be a crucial milestone in the Canadian context for advancing policy advocacy. For instance, this realization led to collaborative cross-disability efforts between HIV and other advocacy groups,  including-  development of the Statement of Common Agenda on Episodic Disabilities;  joint meetings with government representatives and decision makers involved in income support and employment programmes; and a national multi-sectoral summit on episodic disabilities in 2006 [11].

Episodic disability in the context of HIV has been further understood through research by O’Brien et al that explored how adults living with HIV conceptualize disability [12]. Participants perceived disability as a term that suggested permanency in contrast to their experiences of episodic illness.

However, participants were willing to adopt the description of disability in order to access crucial social services. Participants explained that the term, “disability”, on its own did not capture their experiences. Rather, the term, “episodic disability”, emerged as a more accurate framing of the variable health-related consequences experienced by adults living with HIV [13].
This research on people living with HIV also led to development of the Episodic Disability Framework, which describes disability as episodic and multi-dimensional in nature, characterized by unpredictable periods of wellness and illness.  The framework consists of three main components- 

a) Dimensions of disability (symptoms and impairments, difficulties carrying out day-to-day activities, challenges to social inclusion, and uncertainty) that may fluctuate on a daily basis and over the course of living with HIV;
b) Contextual extrinsic factors (social support and stigma) and intrinsic factors (living strategies and personal attributes) that may exacerbate or alleviate disability; and
c) Triggers that initiate momentous or major episodes of disability [12]. 
This idea has been the basis for practical applications, such as the identification of policy models to promote more flexible income support and employment programmes to enable people with episodic disabilities to work when their health permits without losing their income support or health benefits if they get sick again, or to work part-time on an ongoing basis combined with partial disability income support.

A second application has been the development of educational curricula for employers,  human resource professionals and vocational counsellors regarding accommodation of people with episodic disabilities in the workplace.  Finally,  this framing has led to the development of new models of care for people with episodic disabilities whose health status and health care needs tend to fluctuate.
As people on HAART live longer lives,  the long-term impacts of HIV and its treatments,  in combination with aging itself,  may include increased prevalence of co-morbidities,  such as arthritis,  fractures from osteoporosis,  diabetes,  some forms of cancer,  and depression or other mental illnesses [14], all of which may also be episodic in nature and impact. As such, people living with HIV may experience several episodic conditions concurrently,  all with different fluctuations in their functioning and health.  Thus,  the corresponding need for rehabilitation is being seen to expand in order to prevent or manage such disabling impacts and maintain or promote improved quality of life. 
This framing of disability stands in contrast to other leading conceptualizations.  First,  its fundamental concern with cycles of health and illness exists in opposition to the social model of disability, which locates society as the site of the problem, as opposed to the body. Second, the definition of disability in the UN Convention on the Rights of Persons with Disabilities includes the requirement of the impairment being “long term” [1]. The fit between this definition and that of episodic disability has yet to be theorized.

Jill Hanass-Hancock and Stephanie A Nixon

Health Economics and HIV/AIDS Research Division (HEARD), University of KwaZulu-Natal, South Africa
Department of Physical Therapy, University of Toronto, Canada, and Research Associate, HEARD, University of KwaZulu-Natal, South Africa

Journal of the International AIDS Society 2009, 2:3   doi:10.1186/1758-2652-2-3
Jill Hanass-Hancock (.(JavaScript must be enabled to view this email address))
Stephanie A Nixon (.(JavaScript must be enabled to view this email address))

References

1.      United Nations: UN convention on the rights of persons with disabilities.  2008. [http://www.un.org/disabilities/default.asp?id=150]
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3.      Nokes KM: Revisiting how the chronic illness trajectory framework can be applied to persons living with HIV/AIDS. Scholarly Inquiry for Nursing Practice 1998, 12:27-31.
4.      Philips A, O’Dell MW, Mills B: Comprehensive guide for the care of persons with HIV disease: Module 7-HIV rehabilitation services. Ottawa, Canada: Health Canada; 1998.
5.      World Health Organization (WHO): International Classification of Functioning Disability and Health Geneva: WHO, [http://www.who.int/classifications/icf/en/] 2001.
6.      Nixon S, Cott C: Shifting perspectives: reconceptualizing HIV disease in a rehabilitation framework. Physiotherapy Canada 2000, 52:189–197.
7.      Rusch M, Nixon S, Schilder A, Braitstain P, Chan K, Hogg R: Impairments, activity limitations and participation restrictions: Prevalence among persons living with HIV/AIDS in British Columbia Health and Quality of Life Outcomes 2004, 2:46.
8.      The Cross Cluster Initiative on Home-Based Long-Term Care, The Department of HIV/AIDS and Family and Community Health of the World Health Organisation: Community home-based care in resource-limited settings. A framework for action. World Health Organisation, Geneva; 2002.
9.      Worthington C, Myers T, O’Brien K, Nixon S, Cockerill R: Rehabilitation in HIV/AIDS: development of an expanded conceptual framework. AIDS Patient Care and STDs 2005, 19:258-271.
10.    Myezwa H, Stewart A, Musenge E, Nesara P: Assessment of HIV-positive in-patients using the International Classification of Functioning, Disability and Health (ICF), at Chris Hani Baragwanath Hospital, Johannesburg. African Journal of AIDS Research 2009, 8:93-106.
11.    Canadian Working Group on HIV and Rehabilitation: Resources on Episodic Disability [http://www.hivandrehab.ca/EN/resources/episodic_disabilities.php]
12.    O’Brien K, Wilkins A, Zack E, Solomon P: Scoping the field: Identifying key research priorities in HIV and rehabilitation. AIDS and behavior. March 2009. DOI 10.1007/s10461-009-9528-z. 2009.
13.    O’Brien K, Bayoumi AM, Strike C, Young N, Davis AM: Exploring disability from the perspective of adults living with HIV/AIDS: Development of a conceptual framework. Health and Quality of Life Outcomes 2008, 6:76.
14.    Ernst J, Hufnagle KS, Shippy A: HIV and Older Adults. New York: AIDS Community Research Initiative of America; 2008.
15.    Booysen F: Social grants as safety nets for HIV/AIDS-affected households in South Africa1(1). SAHARA Journal 2004, 1:45-56.

Full references

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