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.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
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.
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.
Baumgartner, L. M. (2007). The incorporation of the HIV/AIDS identity into the self over time. Qualitative Health Research, 17(7), 919–931.
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.
Braidotti, R. (2013). The posthuman. Hoboken: Dordrecht Wiley.
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.
Bury, M. (1982). Chronic illness as a biographical disruption. Sociology of Health and Illness, 4(2), 167–182.
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.
Charmaz, K. (1997). Good days bad days: The self in chronic illness and time. New Brunswick: Rutgers University Press.
Chidwick, A., & Borrill, J. (1996). Dealing with a life-threatening diagnosis: The experience of people with human immunodeficiency virus. AIDS Care, 8, 271–284.
Corbin, J., & Strauss, A. (1988). Unending work and care: Managing chronic illness at home. San Franciso: Jossey Bass.
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.
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.
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.
Gallo, R. C. (1996). AIDS as a clinically curable disease: The growing optimism. AIDS Patient Care and STDs, 10, 7–9.
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.
Giddens, A. (1991). Modernity and self-identity: Self and society in late modern age. Cambridge: Polity Press.
Gifford, A. L., & Groessl, E. J. (2002). Chronic disease self-management and adherence to HIV medications. Journal of Acquired Immune Deficiency, 31, S163–S166.
Glaser, B., & Strauss, A. (1967). The discovery of grounded theory. Strategies for qualitative research. Chicago: Aldine.
Hosek, S. G., Harper, G. W., & Domanico, R. (2005). Predictors of medication adherence among HIV-infected youth. Psychology, Health & Medicine, 10(2), 166–179.
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.
Martin, E. (2006). The pharmaceutical person. Biosocieites, 1, 273–287.
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.
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.
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.
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.
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.
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.
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.
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.
Siegel, K., & Lekas, H. M. (2002). AIDS as chronic illness: Psychosocial implications. AIDS, 16(Suppl 4), S69–S76.
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.
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.
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.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights 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)