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E-Module

An HIV and Rehab Resource

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  • About
    • 1 – What is this resource about and who is it for?
    • 2 – Why was this resource created?
    • 3 – How can this resource be used?
    • 4 – Can this resource be used for teaching?
    • 5 – How was this resource developed?
    • 6 – Who contributed to developing this adapted resource?
    • 7 – Who funded the development of this resource?
    • 8 – Disclaimer
  • Section 1
    • 1.1 How is “rehabilitation” defined in this resource?
    • 1.2 How can rehabilitation help people living with HIV?
    • 1.3 How can the World Health Organization’s “ICF” help us think about rehabilitation for people living with HIV?
    • 1.4 How can the Episodic Disability Model help us think about rehabilitation for people living with HIV?
    • 1.5 Who provides rehabilitation for people living with HIV?
    • 1.6 Do rehabilitation providers need special skills or training to care for people living with HIV? If so, what?
    • 1.7 What roles do rehabilitation providers have related to HIV?
    • 1.8 When is rehabilitation clinical intervention useful along the HIV care continuum?
  • Section 2
    • 2.1 What do rehabilitation professionals need to know about the stages of HIV infection?
    • 2.2 What do rehabilitation providers need to know about CD4 count and viral load?
    • 2.3 What is the impact of HIV on body systems and why does this matter for rehabilitation providers?
    • 2.4 Who might rehabilitation providers treat?
    • 2.5 What do rehabilitation providers need to know about antiretroviral therapies?
  • Section 3
    • 3.1 What are the rehabilitation interventions that address impairments common among people living with HIV?
    • 3.2 What are the rehabilitation interventions that can address the activity limitations and participation restrictions common among people living with HIV?
    • 3.3 More information on the rehabilitation interventions available for people living with HIV
    • 3.4 – What do rehabilitation providers need to know about their patients’ beliefs and use of traditional healers, spiritual leaders and alternative therapies outside the formal medical system?
  • Section 4
    • 4.1: Intersectionality Theory in the Context of Rehabilitation
    • 4.2: Children and Youth
    • 4.3: HIV and Aging
    • 4.4: Substance Use
    • 4.5: Trauma
    • 4.6: Racialized Populations
    • 4.7: Indigenous Populations
    • 4.8: HIV, Sex and Gender
    • 4.9: HIV and COVID-19
    • 4.10: Is HIV itself a disability?
  • Section 5
    • 5.1 What are outcome measures?
    • 5.2 Why is it important to use outcome measures during rehabilitation with people living with HIV?
    • 5.3 How do rehabilitation providers know if an outcome measure will be useful in practice?
    • 5.4 What are floor and ceiling effects in outcome measurement?
    • 5.5 What is the difference between generic and HIV-specific outcome measures?
    • 5.6 How should you decide which outcome measures to use?
    • 5.7 How do you access a copy of an outcome measure?
    • 5.8 What are rehabilitation-related outcome measures that can be useful for people living with HIV?
  • Case Studies
    • Case #1 – Acute Care, Cardiorespiratory and Neurological
    • Case #2 – Musculoskeletal – Knee Pain
    • Case #3 – Aging, Cognition, Community, Stroke
    • Case #4 – Complex Case – Musculoskeletal, Episodic, Cardiorespiratory
    • Case #5 – Diabetes, Neuropathy, Substance Use
    • Case #6 – Transition from Paediatric to Adult Care
    • Supplemental Case Studies without Leading Questions
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1.4 How can the Episodic Disability Model help us think about rehabilitation for people living with HIV?

For people who can reliably access and tolerate ART, HIV is becoming a chronic and episodic condition. These cycles of wellness and illness over time are not well captured in the ICF. Therefore, the Episodic Disability Model was developed with adults in Canada to describe the unpredictable nature of living with HIV.1,2

The framework recognizes that each person living with HIV has their own disease course.

The Episodic Disability Model has 3 features:

  • Dimensions of episodic disability which describe four dimensions of episodic disability and their sub-components that may be experienced by adults living with HIV (see Figure 1.4.1)
  • Contextual factors of disability which describe the context in which disability is experienced. Extrinsic and intrinsic contextual factors could exacerbate or alleviate each of the four dimensions of disability for adults living with HIV (see Figure 1.4.2)
  • Triggers or life events that can mark a major episode of disability (e.g., first receiving an HIV diagnosis, starting or changing medications, suffering the loss of a family member or friend) (see Figure 1.4.3)

Figure 1.4.1: Dimensions of Episodic Disability

Dimensions of Episodic Disability. Read full description below.
O’Brien et al. Health and Quality of Life Outcomes 2008 6:76 doi:10.1186/1477-7525-6-76
Figure 1.4.1: Dimensions of Episodic Disability – Description

This diagram shows four major dimensions of episodic disability and provides additional details for some of these categories.

The first dimension of episodic disability is symptoms and impairments.  These can be caused by adverse effects of HIV or its treatment (e.g., fatigue, diarrhea, nausea, pain, etc.).  They can also include stress, anxiety and depression.  Symptoms and impairments can also be impacted by fear, decreased self esteem, shame or embarrassment or loneliness.

The second dimension of episodic disability is difficulties with day-to-day activities.

The third dimension of episodic disability is challenges to social inclusion.  This can include challenges with parent roles, work and school, personal relationships and other social roles and activities.

The fourth dimension of episodic disability is uncertainty.

Figure 1.4.2: Contextual factors of disability

Contextual factors of disability. Read full description below.
O’Brien et al. Journal of the International AIDS Society 2009 12:30 doi:10.1186/1758-2652-12-30
Figure 1.4.2: Contextual factors of disability – Description

This diagram shows two major contextual factors of disability.  These interact with and influence dimensions of disability to exacerbate or alleviate episodes of disability.

External contextual factors include social support and stigma. Social support may come from friends, family, partners, pets or community. Support may also come from accessing health care services and personnel and program and policy supports (e.g., for income or housing).

Intrinsic contextual factors include living strategies and personal attributes (e.g., aging).  Living strategies include seeking social interaction with others, blocking HIV out of the mind maintaining sense of control over life and attitudes and beliefs.  Maintaining a sense of control over life may include lifestyle, re-establishing a purpose in life, maintaining life balance, planning for and anticipating the future and maintaining appropriate levels of biological markers for disease management.  Attitudes and beliefs may include outlook on life, comparisons to other illnesses and faith and spirituality.

Figure 1.4.3: Triggers

Triggers. Read full description below
O’Brien et al. Health and Quality of Life Outcomes 2008 6:76 doi:10.1186/1477-7525-6-76
Figure 1.4.3:  Triggers – Description

This diagram illustrates triggers that can initiate major or momentous episodes of disability include.  These triggers may include: an HIV diagnosis, starting or changing antiretroviral medications, experiencing a serious illness (including opportunistic infections), and suffering the loss of others (e.g., family, friends, partners).

1 O’Brien KK, Bayoumi AM, Strike C, Young NL, Davis AM. Exploring disability from the perspective of adults living with HIV/AIDS: development of a conceptual framework. Health Qual Life Outcomes. 2008a Oct 4;6:76. PubMed PMID: 18834538; PubMed Central PMCID:PMC2572592.

2 O’Brien KK, Davis AM, Strike C, Young NL, Bayoumi AM. Putting episodic disability into context: a qualitative study exploring factors that influence disability experienced by adults living with HIV/AIDS. J Int AIDS Soc. 2009 Nov 9;12(1):5. PubMed PMID: 19900284.

Section 1.4.1: Why is it helpful to think about HIV as an episodic disability?

As people with access to ART live longer, the long-term impacts of HIV and its treatments (in combination with aging itself) may lead to increased prevalence of concurrent conditions, such as arthritis, fractures from osteoporosis, diabetes, some forms of cancer, and depression or other mental illnesses.1

  • HIV is considered an episodic disability2,3
  • The common feature of many other conditions is that they can all be episodic both 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 need for rehabilitation is expanding to prevent or manage such disabling impacts and promote quality of life.

This approach also helps to identify policy models that promote more flexible employment or school programs that enable people with episodic illnesses to participate when their health permits without losing the opportunity when they get sick again.

1 Ernst J, Hufnagle KS, Shippy A. HIV and older adults. 2008. New York: AIDS Community Research Initiative of America.

2 O’Brien KK, Bayoumi AM, Strike C, Young NL, Davis AM. Exploring disability from the perspective of adults living with HIV/AIDS: development of a conceptual framework. Health Qual Life Outcomes. 2008a Oct 4;6:76. PubMed PMID: 18834538; PubMed Central PMCID:PMC2572592.

3 O’Brien KK, Davis AM, Strike C, Young NL, Bayoumi AM. Putting episodic disability into context: a qualitative study exploring factors that influence disability experienced by adults living with HIV/AIDS. J Int AIDS Soc. 2009 Nov 9;12(1):5. PubMed PMID: 19900284.

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