Increased integration of the fields of HIV and disability

Although the two fields may have unique histories, there is now evidence that they are becoming increasingly integrated.  First,  we are seeing HIV organizations taking up the concerns of people with disabilities.

For example, a leading voice of people with disabilities at the International AIDS Conference in Mexico City in 2008 was AIDS-Free World,  the non-governmental organization spearheaded by Stephen Lewis,  former UN Special Envoy for HIV/AIDS in Africa.  Second,  we are seeing disability organizations taking up the concerns of people living with HIV.  Third,  there are examples of HIV organizations and disability organizations meeting in the middle ground to address shared concerns. 
For example,  the Disability and HIV/AIDS Trust,  based in Botswana,  operates as an umbrella organization for the southern African region to bring together disabled people’s organizations and AIDS service organizations.  Another illustration is the recent International Policy Dialogue on HIV/AIDS and Disability, hosted by the Government of Canada, which engaged representatives from each field to explore synergies. Looking to the future, there are various directions that we anticipate these fields to take, based on current trajectories.

Human rights as a unifying advocacy tool
The United Nations Convention on the Rights of Persons with Disabilities is a major advance for people with disabilities and their advocates.  Not only is this spotlight bringing attention to disability issues,  but the focus on a rights-based approach to these concerns is crucial.  This development has attracted the attention of HIV communities and will likely serve as a vehicle for further integrating the two movements. 
We are likely to see the HIV community looking to the convention for opportunities to realize rights in a new way, and the disability community looking to the HIV community for additional lessons learned through successful human rights advocacy. With the increasing feminization of the HIV pandemic, plus the disproportionate burden that women face with respect to physical and mental disabilities, gender and the link with sexual and reproductive rights will likely emerge as a focus of concern within the HIV and disability realm. 
Wider recognition of the ICF framework
There is the potential for a constructive tension to be generated by the collision of the different conceptual orientations that have underpinned the evolution of the two fields. 

For example, rehabilitation and disability in the context of HIV draws on a medical model, which is concerned with diagnosis and disease-level issues.  The movement has broadened to engage issues at the societal level. However, the link to health remains firmly entrenched. 
Conversely, the disability movement has a tradition based on the social model of disability and reactions to it. A human rights framework provides an alternative to each of the approaches and will serve to advance the fields, as discussed above.

However, it is also likely that a conceptual middle ground will be found in the International Classification of Functioning,  Disability and Health (ICF) model, which incorporates many dimensions of both of these frameworks and may offer a common language across the fields.
Focus on service delivery
The field of rehabilitation in the context of HIV was spurred by the arrival of treatment more than a decade ago in wealthy countries. With treatment now rolling out in resource-limited countries, a similar phenomenon is likely to arise whereby people with HIV start living longer lives, but with a range of activity limitations and participation restrictions.  Thus,  the need for disability and rehabilitation services will grow. 
However,  this growth in demand for services will occur in regions where health and social service systems are already fragile and where many people with disabilities are already underserved, putting extraordinary pressure on already stretched systems. One response will see the parallel systems of home-based care and community-based rehabilitation being sought to help fill the gaps. The models underpinning home-based care, which is a common model of care for HIV and AIDS,  and community-based rehabilitation,  a dominant approach to disability,  derive from similar philosophies. 
As these similarities come to be understood across the two fields, opportunities for cross-learning can be realized,  particularly from community-based rehabilitation because of its long history (e.g., using community-based rehabilitation handbooks for guidance in using local resources, and learning lessons about financing home-based care based on the decades of experience in community-based rehabilitation programmes).  We can also expect to see the development of best-practice guidelines for HIV and disability care and support.

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]
2.      Brashers DE, Neidig JL, Cardillo LW, Dobbs LK, Russell JA, Haas SM: “In an important way, I did die’: uncertainty and revival in persons living with HIV or AIDS. AIDS Care 1999, 11:201-219.
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


The complete article is available as a provisional PDF.

Provided by ArmMed Media