Conducting research on Positive Health, Dignity and Prevention to monitor the impact of the scale-up of testing and treatment on the lives of people living with HIV

Thembi NkambuleSWANNEPHA, SwazilandJuly 2012, AIDS2012, Washington DC

Concrete evidence to guide our project

SWANNEPHA is part of the MaxART

programme = Maximising ART for Better

Health and Zero New Infections

Multi-disciplinary partnership, led by the MoH

and involving national and international

partners (e.g. CHAI, SAN!, SafAIDS, GNP+,

UvA, SACEMA)

We need concrete evidence about realities on

the ground to drive our thinking and our work2

Methodology

People living with HIV led on a study (data

collectors and interviews)

Collected data from 921 other people living with

HIV in 22 clinics and 100 support groups

Asked about a number of areas affecting our

lives (seven components of Positive Health,

Dignity and Prevention)

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4

What did we find? People are coming very late for testing

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Don’t remember

Over 5 years

>4 to 5 years

>3 to 4 years

>2 to 3 years

>1 to 2 years

3 months to 1 year

<3 months

Immediately

0% 10% 20% 30% 40% 50% 60%

1%

6%

2%

2%

4%

8%

16%

13%

48%

Length of time between HIV diagnosis and ART initiation (among respondents on ART, n=652)

Why people living with HIV think some stop taking treatment

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ARVs not available

Other

Costs

Distance

Tired of taking ARVs

Side effects

Lack of family support

Lack of food

Stigma/Discrimination

0% 10% 20% 30% 40% 50% 60% 70% 80% 90%

2%

4%

7%

9%

11%

15%

20%

39%

85%

In your opinion, what are the main reasons why it is difficult for some people to continue to take their ARVs?

(among respondents who said it would be difficult, n=183, 28%)

What people think would happen if their status is disclosed

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Other

Deported

Expelled from school

Lose the right to inherit

Children would be separated from me

Socially rejected

Get fired

Denounced

Family would abandon me

Partner would leave me

Get support

0% 10% 20% 30% 40% 50% 60% 70% 80%

3%

7%

9%

11%

11%

12%

13%

14%

16%

18%

67%

What do you think would happen if you disclosed your HIV status?

About discrimination experienced by PLHIV

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Attending an educational institution

Accessing legal services

Accessing sexual health services

Accessing reproductive health services

Being fired

Other

Renting accommodation

Getting employment

Getting a job promotion

Accessing general health services

Being rejected by sexual/relationship partner

Being rejected by family

At social/community gatherings

0% 5% 10% 15% 20% 25% 30% 35%

2%

2%

3%

3%

5%

7%

9%

9%

9%

9%

13%

31%

33%

In the last 12 months, in what areas of life would you say you have experienced the most discrimination because of your HIV status

(n=127)

Action taken to respond to discrimination

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Lodged a complaint a civil society organisation

Other

Sought legal redress

Tried to sensitise those involved

Confronted the perpetrator(s) directly

Shared with HTC counselor

Didn't do anything

0% 5% 10% 15% 20% 25% 30% 35% 40% 45%

3%

6%

12%

13%

16%

16%

41%

What action did you take to respond to this discrimination? (n=127)

Services accessed since disclosing their HIV status

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Other

Scholarship

Micro-credit

Employment

Health insurance

Food security assistance

Training

None

0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0%

0%

1%

2%

3%

5%

9%

25%

60%

Have you accessed some of the following services since disclosing your HIV status?

Important data for action

Informing stigma reduction initiatives- Production of materials on treatment support: positive

messages and bold images- Male-focused health days: visible leadership of PLHIV- SMS messages in the M-Health programme: appropriate

use of language, proper informed consent processes

Informing areas of priority for human rights monitoring- Access to HIV-related services, including HIV testing- Confidentiality and privacy- Supportive environment and attitudes in clinics and

community- Quality counselling- Referrals within community for support (e.g. GBV)

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More areas of action

Data to inform development of national policy- National Stigma and Discrimination Framework- Positive Health, Dignity and Prevention guidelines

Data to provide insights into areas for deeper qualitative research to be conducted by social science partners in the MaxART programme (e.g. what are the experiences of PLHIV who have not yet started treatment?)

Data to monitor impact of our programme – at the end of the programme, what has changed in the lives of people living with HIV?

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Ngiyabonga!

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The MaxART programme was made possible by the financial support of the Dutch Postcode

Lottery and the leadership of the Ministry of Health, Kingdom of Swaziland