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The Epidemiology and Care of Children, Youth and Families Living with
HIV in CanadaStanley Read, MD, PhD, FRCPCDivision of Infectious Diseases,HIV Family Centered Care ProgramThe Hospital for Sick Children
THE HOSPITAL FOR SICK CHILDREN
Families living with HIV in Canada
Many are immigrant and refugee families and those without status
People from Africa and the Caribbean disproportionately represented
Minority and marginalized groups Aboriginals Drug users Mentally challenged
Data collected systematically on all known HIV+ pregnant women and their babies (Canadian Perinatal HIV Surveillance Project)
VancouverEdmonton
CalgarySaskatoonWinnipegTorontoOttawa
HamiltonLondonWindsorKingstonSudburyMontreal
Quebec CityFredericton
CharlottetownHalifax
St John’sIqualuit
WhitehorseYellowknife
0
10
20
30
40
50
60
70
80
90
100
2000 2001 2002 2003 2004 2005 2006 2007
An
nu
al A
bso
lute
Nu
mb
er
BlackWhiteAboriginalLatin AmerAsianS-AsianOther Unknown
Maternal EthnicityTotal cohort
Can I(we) have a healthy baby?
one of the great achievements in the management of HIV/AIDS
optimal ARVs to HIV+ pregnant woman – treat mother and prevent transmission
PREVENTION OF MOTHER-TO-CHILD TRANSMISSION
Hospital for Sick Children Clinic:Babies born to HIV+ mothers on ART
0
10
20
30
40
50
60
2001 2003 2005 2007 2009(July)
TotalDx in pregnRepeatRepeat (+)
Prospective cohort
84
8991
83
87
90 89 87
4 4 7 6112 5 1
% mothers on HAART/ART
Abs
olut
e A
nnua
l Num
ber 84
8991
83
87
90 89 87
4 4 7 6112 5 1
% mothers on HAART/ART
Abs
olut
e A
nnua
l Num
ber 84
8991
83
87
90 89 87
4 4 7 6112 5 1
% mothers on HAART/ART
Abs
olut
e A
nnua
l Num
ber
Renewed efforts should be made to avoid “missed opportunities” of prevention, such as:
- universal implementation of HIV testing in pregnancy, 3rd trimester testing
- improved access to antenatal care in situations of addictions,
mental health, recent immigration, poverty
- efficient communication of test results
- partner testing for pregnant women
- emphasize avoidance of breastfeeding, pre-chewed feeding
Issues:
Monitoring Program for Babies Exposed to ARVs Evaluation of HIV status and evidence of
mitochondrial dysfunction at 1, 2, 3, 6 and 18 months and then annually
Developmental assessments at 6 and 18 months and then annually
Challenges to Developmental Assessments
Many of the children live in an ethnocultural environment reflecting the origin of their parents until they are old enough to go to kindergarten
Lack of a control group of children raised in similar situations
Raising a child with HIV
HSC CLINIC POPULATION
Approx. 89 HIV+ children and families
•67% African and Caribbean
60% - parent(s) born in Africa15% - parent(s) born in Caribbean13% - parents born in Canada 1% - Eastern Europe 9% - Asian/South Asian 2% - South and Central America
Caregivers of HIV+ ChildrenLiving with parent(s)
Extended Family
Adopted/
Fostered
Total
SickKids
Toronto
70(79%) 8(9%) 11(12%) 89
Oak Tree
Vancouver
24(50%) 49(8%) 20(42%) 48
St. Justine
Montreal
65
CHEO
Ottawa
28(88%) 1(3%) 3(9%) 32
Challenges of daily living
• Many families living at or below poverty line, stigma and discrimination
• Taking antiretrovirals is a difficult, lifetime commitmentMany factors involved:-complex psychosocial and ethnocultural issues, stigma/secrecy, access to health care, lack of education, trust, drug use, mental illness
• Support systems – very important-Hospital – multidisciplinary team-Community – Teresa Group, AIDS Committees, Voices of Positive Women, Women’s Health in Women’s Hands, etc
Surv
ival
Dis
tribu
tion
Func
tion
0.00
0.25
0.50
0.75
1.00
Follow-up (years)
0.0 2.5 5.0 7.5 10.0 12.5 15.0
STRATA: Diagnosis=1996+ Diagnosis=Pre-1996
5-year survival:Pre-1996: 70%1996 and after: 98%
Log-rank p-value = 0.0005
What to tell and when to tell
Disclosure of HIV to Children
How can I tell my children about my HIV? How can I tell my infected child about his or her
HIV? Parent’s major concerns:
- Child’s well-being and emotional reaction- Family’s well-being, fear that children will
tell other people about the HIV-Mothers often fear children will blame
them
Process of Disclosing to Children
-Consider cognitive development and ability to keep a secret
-Start with partial disclosure, emphasizing ‘living well’ with their ‘blood infection’
-Use the words “HIV” (full disclosure)-provide on-going information, hope and support as
children grow in understanding
Adolescents and transition
Adolescents: Challenges and Rewards Adolescents with HIV similar to those with
any chronic health problem Most have ‘grown up’ with their HIV and
the health care team Follow the same patterns: ‘raging
hormones’, fluctuations in maturity, attempts at ‘independence’
Difficult to convince an otherwise well teen that they need to take medication to prevent serious opportunistic infections
Group support – sessions facilitated by Teresa Group team
Sexual Maturation
Prepare for sexual exploration – discussions (Adolescent Medicine) around safer sex
Encourage openness – non-critical, non-judgmental approach
Disclosure to partner before sex Keep an open door for discussions/problems
Transition – Good-to-Go Program
Preparing the adolescent for transition to adult care
New responsibilities for self care