the epidemiology and care of children, youth and families living with hiv in canada stanley read,...

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