Skip to main content

Living Optimally with HIV: Youth Experience in a Metropolitan Canadian City

  • Chapter
  • First Online:
Children and Young People Living with HIV/AIDS

Abstract

In this chapter, we describe the experiences of a sample of HIV-positive youth whose intact adolescent identities contrast sharply with the expected identity challenges of persons living with serious, chronic disease. Our purpose is, first, to showcase this novel positive conceptualization of chronic illness identity emerging from the successful management of ‘healthy’ diseased bodies; and second, to describe the social structural context supporting these adolescents’ successes. The availability of positive HIV-positive role models, and highly supportive formal health and social care for these youth aligned with uncharacteristically high levels of adherence to antiretroviral regimes, highly positive health-self assessments, and accounts of ‘normal lives’ described by most in our study group. These youth showed a cautious optimism about the future – in the context of the negotiation of intimacy and sexuality – related to disclosure of their private HIV-positive identities and their embodied HIV-positive status.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 84.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 109.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 109.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Ballantyne, P., Mirza, R. M., Austin, Z., Boon, H. S., & Fisher, J. A. (2011). Becoming old as a “pharmaceutical person’: Negotiation of health and medicines by Canadian immigrant and non-immigrant older adults. Canadian Journal on Aging, 30(2), 169–184.

    Article  Google Scholar 

  • Battles, H. B., & Wiener, L. S. (2002). From adolescence through young adulthood: Psychosocial adjustment associated with long term survival of HIV. Journal of Adolescent Health, 30, 161–168.

    Article  Google Scholar 

  • Baumgartner, L. M. (2007). The incorporation of the HIV/AIDS identity into the self over time. Qualitative Health Research, 17(7), 919–931.

    Article  Google Scholar 

  • Belzer, M. E., Fuchs, D. N., Luftman, G. S., & Tucker, D. J. (1999). Antiretrovial adherence issues among HIV-positive adolescents and young adults. Journal of Adolescent Health, 25, 316–319.

    Article  Google Scholar 

  • Braidotti, R. (2013). The posthuman. Hoboken: Dordrecht Wiley.

    Google Scholar 

  • Brashers, D. E., Neidig, J. L., Reynolds, N. R., & Haas, S. (1998). Uncertainty in illness across the HIV/AIDS trajectory. Journal of the Association of Nurses in AIDS Care, 9, 66–77.

    Article  Google Scholar 

  • Bury, M. (1982). Chronic illness as a biographical disruption. Sociology of Health and Illness, 4(2), 167–182.

    Article  Google Scholar 

  • Canadian Association for Adolescent Health. (2006). Sexual behaviour and lack of knowledge threaten health of Canadian teens. Available at: http://www.acsa-caah.ca/ang/pdf/misc/research.pdf. Accessed 25 Aug 2014.

  • Centres for Disease Control and Prevention. (2014, March 2014). CDC HIV/AIDS fact sheet. HIV/AIDS among youth. Available at: http://www.cdc.gov/hiv/pdf/risk_youth_fact_sheet_final.pdf. Accessed 10 Aug 2014.

  • Charmaz, K. (1987). Struggling for a self: Identity levels of the chronically ill. Research in the Sociology of Health Care, 6, 283–321.

    Google Scholar 

  • Charmaz, K. (1997). Good days bad days: The self in chronic illness and time. New Brunswick: Rutgers University Press.

    Google Scholar 

  • Chidwick, A., & Borrill, J. (1996). Dealing with a life-threatening diagnosis: The experience of people with human immunodeficiency virus. AIDS Care, 8, 271–284.

    Article  Google Scholar 

  • Corbin, J., & Strauss, A. (1988). Unending work and care: Managing chronic illness at home. San Franciso: Jossey Bass.

    Google Scholar 

  • Council of Ministers of Education, Canada. (2003). Canadian youth, sexual health and HIV/AIDS study. Factors influencing knowledge, attitudes and behaviours. Council of Ministers of Education. Available at: http://www.cmec.ca/Publications/Lists/Publications/Attachments/180/CYSHHAS_2002_EN.pdf. Accessed 25 Aug 2014.

  • Di Risio, M. (2008). Understanding the barriers and facilitators to HIV drug adherence among adolescents. Unpublished Master’s thesis, Leslie Dan Faculty of Pharmacy, Toronto, The University of Toronto, Toronto.

    Google Scholar 

  • Evangeli, M., Greenhalgh, C., Frize, G., Foster, C., & Fidler, S. (2014). Parenting considerations in young adults with perinatally acquired HIV. AIDS Care, 26(7), 813–816.

    Article  Google Scholar 

  • Flicker, S., Skinner, H., Read, S., Veinot, T., McClelland, A., Saulnier, P., & Goldberg, E. (2005). Falling through the cracks of the big cities. Who is meeting the needs of HIV-positive youth? Canadian Journal of Public Health, 96(4), 308–312.

    Google Scholar 

  • Gallo, R. C. (1996). AIDS as a clinically curable disease: The growing optimism. AIDS Patient Care and STDs, 10, 7–9.

    Article  Google Scholar 

  • Giacomet, V., Albano, F., Starace, F., deFranciscis, A., Giaquinto, C., Castilli Gattinara, G., Bruzzese, E., Gabiano, C., Galli, L., Vigano, A., Caselli, D., & Guarino, A. (2003). Adherence to anti-retroviral therapy and its determinants in children with human immunodeficiency virus infection: A multi-centre, national study. Acta Paediatra, 92, 1398–1402.

    Article  Google Scholar 

  • Giddens, A. (1991). Modernity and self-identity: Self and society in late modern age. Cambridge: Polity Press.

    Google Scholar 

  • Gifford, A. L., & Groessl, E. J. (2002). Chronic disease self-management and adherence to HIV medications. Journal of Acquired Immune Deficiency, 31, S163–S166.

    Article  Google Scholar 

  • Glaser, B., & Strauss, A. (1967). The discovery of grounded theory. Strategies for qualitative research. Chicago: Aldine.

    Google Scholar 

  • Hosek, S. G., Harper, G. W., & Domanico, R. (2005). Predictors of medication adherence among HIV-infected youth. Psychology, Health & Medicine, 10(2), 166–179.

    Article  Google Scholar 

  • HPA Communicable Disease Surveillance Centre (HIV and STI Department) & the Scottish Centre for Infection and Environmental Health. (2013). Unpublished National HIV data surveillance tables; December 16, 2013. Available at: http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/HIV/HIVData/#1._National_HIV_Surveillance_Data_Tables . Accessed 1 Aug 2014.

  • Liamputtong, P., Haritavorn, N., & Kiatying-Angsulee, N. (2015). Local discourse on antiretrovirals and the lived experience of women living with HIV/AIDS in Thailand. Qualitative Health Research, 25(2), 253–263.

    Article  Google Scholar 

  • Martin, E. (2006). The pharmaceutical person. Biosocieites, 1, 273–287.

    Article  Google Scholar 

  • Mellins, C. A., Elkington, K. S., Bauermeister, J. A., Brackis-Cott, E., Dolezal, C., McKay, M., Wiznia, A., Bamji, M., & Abrams, E. J. (2009). Sexual and drug use in perinatally HIV-infected youth: Mental health and family influences. Journal of American Academic Child Adolescent Psychiatry, 48(8), 810–819.

    Article  Google Scholar 

  • Murphy, D. A., Wilson, C. M., Durako, S. J., Muenz, L. R., & Belzer, M. (2001). Antiretroviral medication adherence among the REACH HIV-infected adolescent cohort in the USA. AIDS Care, 13(1), 27–40.

    Article  Google Scholar 

  • Murphy, D. A., Sarr, M., Durako, S. J., Moscicki, A. B., Wilson, C. M., & Muenz, L. R. (2003). Barriers to HAART adherence among human immunodefiency virus – Infected adolescents. Archives of Pediatric Adolescent Medicine, 157, 249–255.

    Article  Google Scholar 

  • Nichols, S. L., Lowe, A., Zhang, X., Garvie, P. A., Thorton, S., Goldberger, B. A., Hou, W., Goodenow, M. M., & Sleaseman, J. W. (2014). Concordance between self-reported substance use and toxicology among HIV-infected and uninfected at risk youth. Drug and Alcohol Dependence, 134, 376–382.

    Article  Google Scholar 

  • Orban, L. A., Stein, R., Koenig, L. J., Conner, L. C., Rexhouse, E. L., Lewis, J. V., & LaGrange, R. (2010). Coping strategies of adolescents living with HIV: Disease specific stressors and responses. AIDS Care, 22(4), 420–430.

    Article  Google Scholar 

  • Petersen, I., Bhana, A., Myeza, N., Alicea, S., John, S., Holst, H., McKay, M., & Mellins, C. (2010). Psychosocial challenges and protective influences for socio-emotional coping of HIV-positive adolescents in South Africa: A qualitative investigation. AIDS Care, 22(8), 970–978.

    Article  Google Scholar 

  • Public Health Agency of Canada. (2007). HIV/AIDS Epi Update. November 2007. Available at: http://www.phac-aspc.gc.ca/aids-sida/publication/epi/2010/4-eng.php. Accessed 1 Aug 2014.

  • Public Health Agency of Canada. (2010). HIV/AIDS Epi Update. July, 2010. Available at: http://www.phac-aspc.gc.ca/aids-sida/publication/epi/2010/4-eng.php. Accessed 1 Aug 2014.

  • Pugatch, D., Bennett, L., & Patterson, D. (2002). HIV medication adherence in adolescents: A qualitative Study. Journal of HIV/AIDS Prevention & Education for Adolescents & Children, 5, 9–29.

    Article  Google Scholar 

  • Rao, D., Kekwaletswe, T. C., Hosek, S., Martinez, J., & Rodriguez, F. (2007). Stigma and social barriers to medication adherence with urban youth living with HIV. AIDS Care, 19(1), 28–33.

    Article  Google Scholar 

  • Siegel, K., & Lekas, H. M. (2002). AIDS as chronic illness: Psychosocial implications. AIDS, 16(Suppl 4), S69–S76.

    Article  Google Scholar 

  • UNAIDS. (2008). 08 Report on the global AIDS epidemic. Joint United Nations Programme on HIV/AIDS (UNAIDS). UNAIDS/08.25E/JC1510E. Available at: http://www.unaids.org/en/media/unaids/contentassets/dataimport/pub/globalreport/2008/jc1510_2008globalreport_en.pdf. Accessed 25 Aug 2014.

  • UNAIDS. (2013). Global report. UNADIS report on the global AIDS epidemic 2013. Available at: http://www.unaids.org/en/media/unaids/contentassets/documents/epidemiology/2013/gr2013/unaids_global_report_2013_en.pdf. Accessed 15 Aug 2014.

  • Veinot, T. C., & Harris, R. (2011). Talking about, knowing about HIV/AIDS in Canada: A rural-urban comparison. The Journal of Rural Health, 27, 310–318.

    Article  Google Scholar 

  • Veinot, T. C., Flicker, S. E., Skinner, H. A., McClelland, A., Saulneir, P., Read, S. E., & Goldberg, E. (2006). “Supposed to make you better but it doesn’t really”: HIV-positive youths’ perception of HIV treatment. Journal of Adolescent Health, 238, 261–267.

    Article  Google Scholar 

  • Wiklander, M., Rydstrom, L. L., Ygge, B. M., Naver, L., Wettergren, L., & Erksson, L. E. (2013). Psychometric properties of a short version of the HIV stigma scale, adapted for children with HIV infection. Health and Quality of Life Outcomes, 11(195), 1–7.

    Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Michelle Di Risio .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2016 Springer International Publishing Switzerland

About this chapter

Cite this chapter

Di Risio, M., Ballantyne, P.J., Read, S. (2016). Living Optimally with HIV: Youth Experience in a Metropolitan Canadian City. In: Liamputtong, P. (eds) Children and Young People Living with HIV/AIDS. Cross-Cultural Research in Health, Illness and Well-Being. Springer, Cham. https://doi.org/10.1007/978-3-319-29936-5_5

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-29936-5_5

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-29934-1

  • Online ISBN: 978-3-319-29936-5

  • eBook Packages: Social SciencesSocial Sciences (R0)

Publish with us

Policies and ethics