Inclusive, Enabling Communities

Inclusive, Enabling Communities
Learning Brief


Western Cape Forum For Intellectual Disability

Picturing the future of HIV testing: Developing HIV testing information resources for people with intellectual disabilities

Category: Inclusive, Enabling Communities | Caring and protection of particularly vulnerable groups | 28 February, 2013 - 00:08

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The Western Cape Forum for Intellectual Disability (WCFID) is a support network for service providers in the field of Intellectual disability. It is a formally constituted, representational NGO, with a membership of over 150 organisations catering for people with intellectual disability in the Western Cape. In order to better serve its member organizations it engages in the development of recourses targeted at meeting the needs of people with intellectual disabilities.

This learning brief describes lessons on how the Western Cape Forum For Intellectual Disability (WCFID) developed two useful resources specifically designed for people with intellectual disability regarding HIV education, counselling and testing. The first is a picture book about someone living with HIV’, and the second is practical set of guidelines for HIV counselling and testing for people with intellectual disability. The design of these materials was motivated by the findings of research study that investigated the management of HIV testing for people with intellectual disability living in residential facilities.

Research Findings

WCFID conducted a research study on how HIV testing is managed for people with intellectual disability living in residential facilities. The study highlighted the following important findings:

1.     Although people with intellectual disability are at high risk of HIV, only a small percentage of these individuals access HIV testing.

2.     The absence of policy guidelines and associated resources on HIV testing for people with intellectual disability means that the process of HIV testing does not meet legal and ethical requirements with regard to informed consent and the right to accessible information as set out by the National Health Act (2003).

3.     There is an urgent need to ensure that people with intellectual disability receive HIV counselling and testing in a way that recognises their rights.

4.     Resources need to be developed to better serve people with intellectual disability seeking HIV counselling and testing. These recourses must focus on their need for accessible information, and their equal right to a process of informed consent.

Resource Development

Motivated by the research findings WCFID set out to develop material resources that could inform people with intellectual disability about their rights around HIV counselling and testing, and guidelines for health care professionals working with such individuals. Two products were developed.

1.  The Picture Book: ‘Living with HIV’

  

‘Living with HIV’ is a picture book that tells the story of someone who tests HIV positive. Living with HIV is the second book in this series and follows ‘The HIV Test’ booklet, which depicts a story of a character that tested HIV negative. These books aim to make information about HIV accessible to people with intellectual disability through the use of pictures and physical media.

The development of the 2nd picture book involved four key steps:

  • First, a task team of six professionals were invited from various WCFID member organisations to design a useful picture guide that would clearly communicate to a person with intellectual disability what life is like living with HIV.
  • Second, the task team met together in four sessions to give input and to carefully develop the story line before the artist began drawing. The task team meetings also created an opportunity for networking amongst organisation representatives, strengthening their relationship with WCFID and each other; and encouraging a sense of ownership and interest in the book.
  • Third the book was tested with 10 people with intellectual disability and adjustments made to incorporate their recommendations.
  • Fourth, development of the final product ‘Living with HIV’ – a picture book that tells the story of someone who tests HIV positive.

2.  HIV Testing Guidelines for people with intellectual disabilities

When the WCFID research revealed that that there is no legislation in South Africa regulating informed consent for HIV testing amongst disabled individuals the WCFID team set out develop a simple and easy to use guideline for healthcare providers and support workers.

The result was the development of the ‘Taking the Test’ guidelines: HIV counselling and testing for people with intellectual disability. These guidelines aim to provide healthcare providers and support care workers with a practical and ethical approach toward HIV counselling and testing for people with intellectual disability.

WCFID hope the guidelines will influence practice and policy in specialised facilities (protective workshops, residential homes and special-needs schools) and increase rates of HIV testing for this population group. It is the intention that the resources will support the autonomy of people with intellectual disability and help health professionals engage with HIV education, counselling and testing in a way that is ethically grounded and held by a systematic framework.

Future Plans for Product Distribution

The work will be disseminated through the training of support workers and health professionals. Recognising the need for monitoring and evaluation in terms of how facilities make use of the resources, the WCFID will consult an M & E expert to introduce an more comprehensive evaluation process in our Life skills Sexuality and HIV & AIDS training programme.

The guidelines and resources will be advertised on the WCFID website, promoted throughout South Africa through the South African Federation for Mental Health and be presented as part of UCT Health Science Academic  lunchtime lecture series, and at The WCFID Biennial mini conference.

If the guidelines are to be fully utilised there is a need to get the co-operation of the Department of Health.  Relationships within the Department will be explored with the possibility of one or two pilot projects in healthcare facilities, to assess the needs in these settings. 

 


Alexandra Hospital, Maitland, ASAT House, Western Cape South Africa


 (021) 510 4686


 www.wcfid.co.za

In Short

This learning brief offers lessons from the Western Cape Forum For Intellectual Disability (WCFID) on how it developed and distributed two useful resources for people with intellectual disability regarding HIV education, counselling and testing. 


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