The emerging needs of persons living with haemophilia and HIV/AIDS in British Columbia.
The Haemophilia Programme Enhancement Project (HPEP) was initiated in 1991 to assist Haemophilia Programme staff meet the increasing and complex needs of persons living with haemophilia and HIV/AIDS. A review of the HPEP in 1997 revealed that the needs of this population have changed due to the advances in medical treatment, laboratory monitoring and the proliferation of HIV/AIDS expertise and resources. Continued roles for the HPEP include triage and liaison with HIV specialists to ensure appropriate care, given the possible haematological complications that coexist with HIV and/or liver disease. Access to resources remains problematic for those living in remote regions of British Columbia, and a strong advocacy presence is needed. Services to families and children of persons with HIV and haemophilia is required, especially around disclosure and preparation for the stresses incurred during hospitalization. The fact that many long-term survivors are living in relatively good health has sparked renewed optimism amongst this group. Those who continue to do well are in the process of re-evaluating their lives and may need assistance in establishing both short- and long-term goals. Interventions to sustain hope could include individual and family counselling, facilitated support meetings and a commitment to the provision of vocational rehabilitation counselling, re-training and job placement. For the first time in years, many persons living with haemophilia and HIV are facing an opportunity to look forward into the future and devise ventures which will enhance their feelings of productivity.
Taylor
G
G
Hemophilia Program, Vancouver Hospital and Health Sciences Centre, Mary Pack Arthritis Centre Site, 895 West 10th Avenue, Vancouver, BC V5Z 1L7, Canada. Greg_Taylor@tasvan.arth.gov.bc.ca
D000163:Acquired Immunodeficiency Syndrome / Q000209:etiology / Q000628:therapy*; D001955:British Columbia; D005544:Forecasting; D015658:HIV Infections / Q000209:etiology / Q000628:therapy*; D006467:Hemophilia A / Q000150:complications / Q000628:therapy*; D006801:Humans; D008991:Monitoring, Physiologic / Q000639:trends*; D010344:Patient Advocacy / Q000639:trends; D065227:Transfusion Reaction