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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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4.2: Children and Youth

Immigrant and refugee children arriving in Canada are at increased risk for HIV infection compared with Canadian-born children.1 As more children living with HIV get access to antiretroviral therapy, they are living longer, relatively healthier lives. As they live longer, children may experience many challenges resulting from HIV as well as the side effects of long-term medication. Studies in Sub-Saharan Africa have shown that up to 50% of children living with HIV experience some form of disability, even when they are on antiretroviral medication.2,3 Rehabilitation providers can help to identify these problems and in many cases can provide treatment or advice to lessen their impact.

In this resource, rehabilitation is defined as any services or activities that address or prevent body impairments, activity limitations, and social participation restrictions experienced by an individual.4 Rehabilitation is concerned not only with physical well-being, but also with mental and spiritual dimensions of health that affect a person’s overall quality of life. It is important to remember that children are part of a family and community and that their needs should be viewed within their context.

HIV can affect many different body systems and it often affects children in more unique ways than in adults. The challenges that a child may face will change as they get older, and so it is very important that children and youth get assessed holistically at different times as they grow up.

The International Classification of Functioning, Disability and Health–Children and Youth Version (ICF- CY) was developed by the World Health Organization in response to the need for a tool that could be used across the world to record the characteristics of developing children and the impact of their environment. It can be used in health, education and social sectors. It provides a common language to measure and record the health and disability of children and youth.

In 2012, a resolution was proposed for adoption by the WHO Family of International Classifications Advisory Council to merge the ICF-CY with the ICF so that there is a “streamlined, comprehensive ICF which adequately addresses all aspects of functioning across the lifespan”.5

1 Canadian Pediatric Association. HIV/AIDS in Children and Youth.

2 Devendra A, Makawa A, Kazembe PN, Calles NR, Kuper H. HIV and childhood disability: a case-controlled study at a paediatric antiretroviral therapy centre in Lilongwe, Malawi. PLoS One. 2013 Dec 31;8(12):e84024. doi: 10.1371/journal.pone.0084024. PMID: 24391869

3 Knox J, Arpadi SM, Kauchali S, Craib M, Kvalsvig JD, Taylor M, Bah F, Mellins C, Davidson LL. Screening for developmental disabilities in HIV positive and HIV negative children in South Africa: Results from the Asenze Study. PLoS One. 2018 Jul 3;13(7):e0199860. doi: 10.1371/journal.pone.0199860. PMID: 29969474

4 Worthington C, Myers T, O’Brien K, Nixon S, Cockerill R. Rehabilitation in HIV/AIDS: development of an expanded conceptual framework. AIDS Patient Care STDS. 2005 Apr;19(4):258-71. PubMed PMID: 15857198.

5 World Health Organization. Implementing the merger of the ICF and the ICF-CY.

4.2.1: Adolescents and Young Adults

Adolescence is a time of transition and growth during which an individual faces changes on many fronts, including physical, emotional, and mental processes as well as sexual identity.1 Responding to an HIV diagnosis may be particularly difficult for youth, especially for those who are marginalized as a consequence of sexual orientation, race, ethnicity, abuse, homelessness, precarious living arrangements, and substance abuse.

As with adults, an HIV diagnosis can be traumatic and is frequently associated with depression and low self-esteem. Adolescents infected with HIV face multiple health challenges.2-4 Those who acquire HIV during their youth face decisions under significant time constraints. Rapid adaptation to stigma and living with a chronic disease is imperative for these youth as initiation of antiretroviral therapy is crucial.1 Unfamiliarity and the associated stigma of HIV make adherence to antiretroviral regimens in youth with behaviourally-acquired HIV a challenge.1 Disclosure and adherence challenges can be related to fear of hurting family and/or being rejected by family and friends. This can be mitigated by support from friends, family and an interdisciplinary team.1 Although HIV has been traditionally associated with malnutrition and rapid weight loss, currently more than half of those with behaviourally acquired HIV are, at least initially, overweight or obese.

Another challenge faced by adolescents with HIV is the pending transition to the adult health care system. In most cases, a pediatric care team has been managing the care of the adolescents since birth or early childhood, allowing for a trusting relationship to develop with the adolescent and also with their caregivers. There is a need for increased independence by the adolescent in managing his or her health condition as the adolescent nears transition to the adult health system.5 The transition process can begin a few years before the actual change occurs, allowing for a gradual increase in the responsibility and time for the adolescent to become accustomed to managing their health. Often during the transition years, the social worker or other health professional, will accompany the youth to the adult clinic to allow for orientation and support throughout the transition. In a Canadian study, factors such as having never had contact with child protection services, never been in foster care or a group home were associated with transition preparedness, while the majority of respondents reported equivalent or better HIV care following the transition.6

1 Spiegel HM, Futterman DC. Adolescents and HIV: prevention and clinical care. Curr HIV/AIDS Rep. 2009 May;6(2):100-7. doi: 10.1007/s11904-009-0015-y. PMID: 19358781.

2 Hazra R, Siberry GK, Mofenson LM. Growing up with HIV: children, adolescents, and young adults with perinatally acquired HIV infection. Annu Rev Med. 2010;61:169-85. doi: 10.1146/annurev.med.050108.151127. PMID: 19622036.

3 Lowenthal ED, Bakeera-Kitaka S, Marukutira T, Chapman J, Goldrath K, Ferrand RA. Perinatally acquired HIV infection in adolescents from sub-Saharan Africa: a review of emerging challenges. Lancet Infect Dis. 2014 Jul;14(7):627-39. doi: 10.1016/S1473-3099(13)70363-3. PMID: 24406145.

4 Sohn AH, Hazra R. The changing epidemiology of the global paediatric HIV epidemic: keeping track of perinatally HIV-infected adolescents. J Int AIDS Soc. 2013 Jun 18;16(1):18555. doi: 10.7448/IAS.16.1.18555. PMID: 23782474.

5 Fair CD, Sullivan K, Gatto A. Best practices in transitioning youth with HIV: perspectives of pediatric and adult infectious disease care providers. Psychol Health Med. 2010 Oct;15(5):515-27. doi: 10.1080/13548506.2010.493944. PMID: 20835962.

6 Kennedy VL, Mellor KL, Brophy J, Bitnun A, Alimenti A, et al. Transition from Pediatric to Adult HIV Care for Young Women Living with HIV. J Int Assoc Provid AIDS Care. 2020 Jan-Dec;19:2325958220903574. doi: 10.1177/2325958220903574. PMID: 32207355

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