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