Dually enacted stigma among young people and

their caregivers living with HIV:

Challenges and opportunities to reaching

90-90-90 in Zambia

Joseph G. Rosen, Edith S. Namukonda Mwelwa Chibuye,

Lyson Phiri, Bwalya Mushiki, Michael T. Mbizvo, Nkomba Kayeyi

13th INTEREST Conference – Accra, Ghana 14 May 2019

Disclosures

The authors confirm they have no personal or

financial conflicts of interest to disclose.

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Stigma profoundly disrupts uptake of and

engagement in HIV treatment services

• Threatens progress to

achieving UNAIDS 90-90-90

targets [Levi et al. 2016]

• Young people particularly

vulnerable to stigma in

schools, facilities, and other

community venues [Surkan et al. 2010, Messer et al. 2010,

Deacon and Stepheny 2007]

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Need to characterize stigma

within HIV-affected households

to inform more responsive care

and treatment services

Study design

• Analysis of baseline data from 2-year prospective cohort study

▪ ZAMFAM beneficiaries (Central Province)

▪ Non-beneficiary comparison (Eastern Province)

• Assess changes in socioeconomic well-being, health, and HIV service use

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Measure prevalence and factors

associated with stigma among

YPLHIV and their HIV+ caregivers

Study population from HIV-affected households

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Caregivers YPLHIV

• Primary guardians of

YPLHIV in household

• Aged 18 or older

• ZAMFAM beneficiaries

(Central Province only)

• Self-reported HIV+

• Aged 5 to 17

• ZAMFAM beneficiaries

(Central Province only)

• Newly diagnosed or linked to ART

(Eastern Province only)

• Know HIV status

(ages 10-17 only)

Sampling strategy (July–October 2017)

• Different sampling approach by province

▪ Central

• 2-stage sampling proportional to YPLHIV population estimate

▪ Eastern

• Convenience sampling using existing registries

• Sampling in districts comparable to Central Province sites by population size and urban/rural locale

• Aimed to recruit comparable numbers of households across provinces

Central

Wards (urban/rural)

were identified

Households sampled within

each ward

Eastern

Registers scanned for

eligible YPLHIV

Households approached for

pre-consent

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Stigma was operationalized from reports

of any of the following experiences

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Survey Items [MEASURE Evaluation, 2013] Caregivers

YPLHIV

5-9 10-14 15-17

Treated badly at work or lost work ✓

Treated badly at school or excluded from

school activities✓ ✓ ✓ ✓

Difficulty finding partners ✓ ✓

Family did not provide care when fell ill ✓ ✓ ✓ ✓

Treated badly by health providers ✓ ✓ ✓ ✓

Lost friends ✓ ✓ ✓ ✓

Treated badly by family members or excluded

from family activities✓ ✓ ✓ ✓

Experienced a break-up of a relationship ✓ ✓

Treated like a social outcast by community ✓ ✓ ✓ ✓

Experienced physical violence ✓ ✓ ✓ ✓

Treated badly at church ✓ ✓ ✓ ✓

Categorical outcome variable constructed from

reported experiences with HIV-related stigma

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DUALLY ENACTED STIGMA

DISCORDANT HOUSEHOLD

STIGMA

NO HOUSEHOLD STIGMA

Both YPLHIV and caregiver

reported at least one

stigma experience

Only one (YPLHIV or

caregiver) reported any

stigma experience

Neither YPLHIV nor

caregiver reported any

stigma experience

Data analysis

● Ordered logistic regression identified correlates of stigma

● Covariates meeting a significance threshold of p

Recruitment, response, and sample

inclusion rates (%), by province

10

417

264

160

335

264

150

CE

NTR

AL P

RO

VIN

CE

EA

STE

RN

PR

OV

INC

E

79%

57%

63%

61%

Recruitment

Response

Sample

Sample sociodemographics aggregated by

province at baseline, by participant subgroup

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Caregivers

(n=310)

90% female

Median age: 40 years

Marital status: 56%

married or in union,

26% widowed

5–9 years

(n=143)

53% female

Median age: 7 years

School enrollment*:

77% females,

52% males

60% female

Median age: 13 years

School enrollment:

80% females,

85% males

10–17 years

(n=167)

*Children in Zambia start school at 7 years, so only children 7 and older were included in this

analysis

YPLHIV

One-fourth (28%) of households reported any

stigma experience (7.1% were dually enacted)

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0 2 4 6 8 10 12 14

Treated badly at church

Experienced physical violence

Treated like outcast by community

Partner dissolved relationship

Treated badly or excluded by family

Lost friends

Treated badly by health providers

Family didn't provide care when ill

Difficulty finding partners

Treated badly or excluded at school

Treated badly at or lost work

Percent (%)

HIV+ caregivers

YPLHIV

N/A

YPLHIV associations with discordant and dually

enacted stigma (N=310)

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Variables

Categorical stigma (%) Adjusted*

None

(n=205)

Discordant

(n=83)

Dual

(n=22) pOR 95% CI

Continuous age, in years

(mean + SD)10.1 ± 3.4 10.9 ± 3.7 11.0 ± 3.7 1.08 1.01–1.16

Sex

Male

Female

39.0

61.0

50.6

49.4

54.6

45.4

1.00

0.59

Ref.

0.36–0.97

Stopped ART for 30+ cont.

days, past year (n=294)7.3 9.9 27.3 3.89 1.25–12.10

Too sick for daily activities,

past month27.3 46.7 36.4 1.89 1.13–3.15

*Model adjusted for YPLHIV continuous age, sex, province, and other covariates presented in the table

Caregiver associations with discordant and

dually enacted stigma (N=310)

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*Model adjusted for caregiver age group, sex, province, and other covariates presented in table

Variables

Categorical stigma (%) Adjusted*

None

(n=205)

Discordant

(n=83)

Dual

(n=22) pOR 95% CI

Spent a whole day/evening

without eating at least once

weekly, past month

44.4 54.2 50.0 1.85 1.04–3.31

Female decision-making

authority over any household

financial expense (n=293)

62.9 45.8 68.2 0.73 0.43–1.24

Factors associated with discordant and dually

enacted stigma in sero-concordant households

Variables Caregivers YPLHIV

Older age ✓

Male sex ✓

Non-adherence to ART ✓

Severe illness ✓

Food insecurity ✓

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✓ statistically significant (p

Conclusions and recommendations

• Stigmatizing experiences reported primarily in food-insecure, socially vulnerable households

• Few households reported dually enacted stigma (

Study limitations

• Cross-sectional design

• Dichotomized measures of inherently different stigma experiences

• Small sample size

• Different sampling procedures by province

• Social desirability and response biases

• Self-reported HIV status of caregivers

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Acknowledgments

• PEPFAR Zambia

• Zambia Ministry of

Health

• Development Aid from

People to People (DAPP)

• Provincial and District

Health Offices (Eastern

Province)

• Study enumerators

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Project SOAR (Cooperative Agreement AID-OAA-A-14-00060) is made possible

by the generous support of the American people through the United States

President’s Emergency Plan for AIDS Relief (PEFPAR) and United States

Agency for International Development (USAID). The contents of this

presentation are the sole responsibility of Project SOAR and Population

Council and do not necessarily reflect the views of PEPFAR, USAID, or the

United States Government.

Through operations research, Project SOAR will determine how best to

address challenges and gaps that remain in the delivery of HIV and AIDS care

and support, treatment, and prevention services. Project SOAR is producing a

large, multifaceted body of high-quality evidence to guide the planning and

implementation of HIV and AIDS programs and policies. Led by the Population

Council, Project SOAR is implemented in collaboration with Avenir Health,

Elizabeth Glaser Pediatric AIDS Foundation, Johns Hopkins University,

Palladium, and The University of North Carolina.

Thank You

NEWS

RESOURCESRESEARCH

EVENTS

Visit projsoar.org!

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