THE TREATMENT JOURNEY =
What is access to treatment for persons living with HIV and AIDS?
The “Treatment Journey”
Planning of health services and treatment programmes usually depends on the expertise of health professionals. Even when the importance of community involvement is acknowledged, the community perspective is not fully included and there is risk of poor uptake of services and lack of community support for service users.
A way around this is to have a user-centred approach – in other words, what does the world look like from the point of view of an individual with a health problem? When a person finds that something is going wrong with his or her body, a journey usually starts – the Treatment Journey. Questions arise and decisions have to be made about what to do – for example: should one treat oneself, who should one turn to for help, where does one go, who has the right information, what helps, what gets in the way? Such journeys often do not follow straight lines and are not one-way only, especially for one with a chronic condition such as HIV – what happens after treatment or care has been accessed, how does the journey continue? This “journey” concept can help us look at many aspects of living with HIV and dealing with the problems it raises. The strength of the concept is that the person with HIV is at the centre of the picture, making them a constant reference point for understanding and planning how to tackle a variety of challenges.
Asking an individual, a group of people living with HIV or a mixed group of community members and service providers to illustrate an individual’s journey, using flip chart and pens, is a simple method that usually results in rich detail and highlights the connections between important people, facilities, challenges and factors. It works best if local people, who know their own situation best, are involved in developing the scenario about the individual whose journey is to be depicted (sometimes a real person’s journey can be used, but confidentiality is highly important and must be respected). The activity can be used for planning services, for developing linkages between community and service providers and for understanding important factors such as the effects of stigma on treatment and prevention. The following is one such scenario:
Scenario 2 – Derek
"Derek is a 30 year old man. He is married to Sandra. He works at a bank. He has one child, age 10 years. He has just found out (from one of the nurses at the clinic) that an old sexual partner Marcus has tested positive for HIV. Derek has never had an HIV test. He is scared to go for a test because some of the nurses know him.”
Barriers
- Fear that HIV means death
- How to disclose to wife?
- Underground sexual practice – having sex with men
- Popular person – know in community
How were barriers overcome?
- Called hotline (anonymity)
- Referred to support group
- Went for testing far from where people know him
- Post-test counseling for dealing with status, and how to disclose
- Go to Baptist Church for counseling
- Go to Medical Research Foundation for treatment
What can the community do?
- Support and encourage use of the Hotline
- Support individuals to seek testing
- Encourage & support with post test counseling to deal with status and disclosure
Research “Summary Workshop Report - The Community Engagement for Effective Care and Treatment in Caribbean Countries (24 th 26 th August 2005.” Conducted by the International HIV/AIDS Alliance. Supported by USAID and I-TECH. All rights reserved .
Disclaimer: The content of this report is the sole responsibility of the authors and can in no way be taken to represent the views of the International HIV/AIDS Alliance, the US Government, ITECH or CHART.
