Canadian Journal of Public Health

, Volume 91, Issue 5, pp 353–356 | Cite as

Social Planning in Canada for Families with HIV Infection

  • Robyn L. Salter GoldieEmail author
  • Dale J. De Matteo
  • Lilian M. Wells
  • Gloria R. Aykroyd
  • Susan M. King


Parents living with HIV and their children face complex medical and social problems. Whether the children are infected or not, they are all affected by the presence of HIV in a parent. The purpose of this article is to describe the problems of families with HIV and to propose social planning measures to respond to their psychosocial needs. It is based on a multicentre study that included in-depth interviews with 110 parents representing 91 Canadian families living with HIV. The study’s findings and recommendations were reviewed by parents with HIV, social workers specializing in helping affected families, and a multidisciplinary consensus conference. This process identified six areas needing attention: stigma and disclosure; promoting and supporting family health; planning and transitions for the care of children; economic issues; cultural and immigrant issues; and education, advocacy, policy development, and research. Recommendations for action were made in each area.


Les parents vivant avec le VIH connaissent des problèmes médicaux et sociaux complexes. Infectés ou non, les enfants ne peuvent qu’être affectés par la présence du VIH chez un parent. Notre étude répond à la demande pressante de planification sociale qui s’exprime au Canada afin de subvenir aux besoins psychosociaux de ces familles. À cet effet, des entrevues multi-sites détaillées ont été menées avec 110 parents représentant 91 familles vivant au Canada avec le VIH. Conclusions et recommandations ont ensuite été soumises à des groupes de parents vivant avec le VIH, des travailleurs sociaux spécialisés dans l’aide aux familles concernées, et à une conférence de professionnels de plusieurs disciplines visant au consensus. Ce processus de grande ampleur a permis l’identification de six grands domaines prioritaires: stigmatisation et divulgation; promotion des soins de santé dans les familles et modes de soutien appropriés; planification et transitions des soins aux enfants; problèmes économiques; immigration et questions culturelles; enfin problèmes d’éducation, de revendications, de politique sociale et de recherche. Des recommandations concrètes sont faites pour chacun de ces domaines.


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. 1.
    Health Canada. HIV and AIDS among women in Canada, HIV/AIDS Epi Update, Bureau of HIV/AIDS, STD and TB Update Series, Ottawa: Bureau of HIV/AIDS, STD and TB Update Series, LCDC, 1998.Google Scholar
  2. 2.
    Salter Goldie R, DeMatteo D, King S, et al. Children born to mothers with HIV/AIDS: Psychosocial issues of families in Canada living with HIV/AIDS: A preliminary report. The Social Worker 1996;64(4):55–66.Google Scholar
  3. 3.
    Wiener L, Septimus A. Psychosocial support for child and family. In: Pizzo P, Wilfert C (Eds.), Pediatric AIDS, The Challenge of HIV Infection in Infants, Children and Adolescents 2nd Ed. Baltimore: Williams and Wilkins, 1994; 809–28.Google Scholar
  4. 4.
    Bor R, Plessis P. The impact of HIV/AIDS on families: An overview of recent research. Fam Syst Health 1997;15(4):413–27.CrossRefGoogle Scholar
  5. 5.
    Draimin B, Levine C, McKelvy L. AIDS and its traumatic effects on families. In: Danieli Y (Ed.), International Handbook of Multigenerational legacies of Trauma. New York: Plenum Press, 1998; 587–601.CrossRefGoogle Scholar
  6. 6.
    Harvey D. HIV/AIDS and public policy: Recent developments. In: Boyd-Franklin N, Steiner G, Boland M (Eds.), Children, Families with HIV/AIDS: Psychosocial and Therapeutic Issues. New York: Guilford Press, 1995; 270–90.Google Scholar
  7. 7.
    Lucke J, Raphael B. HIV and AIDS: Issues for women in Australia. Health Care for Women International 1995;16:221–28.CrossRefGoogle Scholar
  8. 8.
    Stein T. The Social Welfare of Women and Children with HIV and AIDS: Legal Protection, Policy and Programs. New York: Oxford, 1998.CrossRefGoogle Scholar
  9. 9.
    Reidy M, Taggart M, Asselin L. Psychosocial needs expressed by the natural caregivers of HIV-infected children. In: Bor R, Elford J (Eds.), The Family and HIV. London: Cassel, 1994; 169–86.Google Scholar
  10. 10.
    Wells L, Salter Goldie R, DeMatteo D, King S. Families with children: Issues arising from HIV. In: Rowe W, Ryan B (Eds.), Social work and HIV: The Canadian Experience. Toronto: Oxford, 1998; 128–41.Google Scholar
  11. 11.
    Black M, Nair P, Harrington D. Maternal HIV infection: Parenting and early child development. J Pediatr Psychol 1994;19:595–616.CrossRefGoogle Scholar
  12. 12.
    Faithful J. HIV-positive and AIDS-infected women: Challenges and difficulties of mothering. Am J Orthopsychiatry 1997;67:144–51.CrossRefGoogle Scholar
  13. 13.
    Fantos J, Weiner L. Tomorrow’s survivors: Siblings of human immunodeficiency virus-infected children. Dev Behav Pediatr 1994;15:S43–S48.CrossRefGoogle Scholar
  14. 14.
    Hackel K, Somlai A, Kelly J, Kalichman S. Women living with HIV/AIDS: The dual challenge of being a patient and a caregiver. Health Soc Work 1997;22:53–62.CrossRefGoogle Scholar
  15. 15.
    Kaplan M, Marks G, Mertens S. Distress and coping among women with HIV infection: Preliminary findings from a multiethnic sample. Am J Orthopsychiatry 1997;67:80–91.CrossRefGoogle Scholar
  16. 16.
    Lesar S, Maldonado Y. The impact of children with HIV infection on the family system. Families in Society. J Contemp Hum Services 1997;79:272–79.CrossRefGoogle Scholar
  17. 17.
    Lovrin M. Interpersonal support among 8-year-old girls who have lost their parents or siblings to AIDS. Arch Psychiatr Nurs 1995;9:92–98.CrossRefGoogle Scholar
  18. 18.
    Melvin D, Sherr L. HIV infection in London children — psychosocial complexity and emotional burden. Child: Care, health and development 1995;21:405–12.Google Scholar
  19. 19.
    Neibuhr V, Hughes J, Pollard R. Parents with human immunodeficiency virus infection: Perceptions of their children’s emotional needs. Pediatrics 1994;93:421–26.Google Scholar
  20. 20.
    Weiner L, Reikert K, Steinberg S, Pizzo P. Parental expressed needs: A preliminary guide for services and interventions. J HIV/AIDS Prevention and Education for Adolescents & Children 1997;1:35–52.CrossRefGoogle Scholar
  21. 21.
    Health Canada. HIV and AIDS in Canada. Surveillance Report to December 31, 1998. Division of HIV/AIDS Surveillance, Bureau of HIV/AIDS, STD and TB, LCDC, HPB, Health Canada, 1999.Google Scholar
  22. 22.
    Connor E, Sperling R, Gelber R, et al. Reduction of maternal-infant transmission of human immunodeficiency virus type 1 with zidovudine treatment. N Engl J Med 1994;331(18):1173–80.CrossRefGoogle Scholar
  23. 23.
    Simpson B, Shapiro E, Andiman W. Reduction in the risk of vertical transmission of HIV-1 associated with treatment of pregnant women with orally administered zidovudine alone. J Acquir Immune Defic Syndr Hum Retroviral 1997;14:145–52.CrossRefGoogle Scholar
  24. 24.
    Fowler M. Update: Transmission of HIV-1 from mother to child. Curr Opin Infect Dis 1997;10(6):343–48.CrossRefGoogle Scholar
  25. 25.
    The International Perinatal HIV Group. The Mode of Delivery and the Risk of Vertical Transmission of Human Immunodeficiency Virus Type 1 — A Meta-Analysis of 15 Prospective Cohort Studies. N Engl J Med 1999;340(13):977–87.CrossRefGoogle Scholar
  26. 26.
    Salter Goldie R, DeMatteo D, King S, Wells L. Children Born to Mothers Living with HIV: Psychosocial Issues for Families in Canada Living with HIV/AIDS. Report prepared for Health Canada, 1997. Available on loan from Canadian HIV/AIDS Clearinghouse, Ottawa.Google Scholar
  27. 27.
    Elliott R. Comprehensive process analysis: Understanding the change process in significant process events. In: Packer M, Addison R (Eds.), Entering the Circle: Hermeneutic Investigation in Psychology. Albany: SUNY Press, 1989; 165–89.Google Scholar
  28. 28.
    Strauss A, Corbin J. Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Newbury Park, CA: Springer, 1990.Google Scholar
  29. 29.
    Stiles W. Quality control in qualitative research. Clinical Psychology Review 1993;12:593–618.CrossRefGoogle Scholar
  30. 30.
    Statistics Canada. Demographic Information, 1996 Census. Ottawa, Statistics Canada, 1998.Google Scholar
  31. 31.
    Baker M. Canadian Family Policies: Cross-national Comparisons. Toronto: University of Toronto Press, 1995.CrossRefGoogle Scholar

Copyright information

© The Canadian Public Health Association 2000

Authors and Affiliations

  • Robyn L. Salter Goldie
    • 1
    Email author
  • Dale J. De Matteo
    • 2
  • Lilian M. Wells
    • 3
  • Gloria R. Aykroyd
    • 4
  • Susan M. King
    • 5
    • 6
  1. 1.Department of Social WorkThe Hospital for Sick ChildrenTorontoCanada
  2. 2.HIV ProgramThe Hospital for Sick ChildrenTorontoCanada
  3. 3.Faculty of Social WorkUniversity of TorontoTorontoCanada
  4. 4.HIV Care ProgrammeSt. Joseph’s Health CentreLondonCanada
  5. 5.Department of PaediatricsThe Hospital for Sick ChildrenTorontoCanada
  6. 6.Faculty of MedicineUniversity of TorontoTorontoCanada

Personalised recommendations