Chair: Stephen Bitti, UKC
Facilitator: Gus Cairns
Rapporteur: Stephen Bitti
This session was supported through an unrestricted grant from the London HIV Commissioning Consortium Treatment Information Providers Initiative. In order to begin discussion several questions were posed to the group regarding the type of information provision currently commissioned and produced and what their needs might be in the future:
Were people happy with what was provided?
Where do people access their treatment information?
Are there gaps in service provision that need to be addressed?
Is the information provided too technical or too simplistic?
Was there a need for more of the information provided to be translated into foreign languages?
What else would people like to see available?
Various general comments were then made and are represented below:
The group mainly obtained their treatment information (magazines, leaflets and booklets) at clinics and through accessing the Internet.
Mostly through UKC’s Positive Nation magazine (PN) and NAM’s AIDS Treatment Update (ATU). Yet, whereas there was recognition of the easily understood treatment information and peer support provided by PN some in the group felt that it was often difficult to digest all the materials that they were sent through the post, agreeing that sometimes it was often easier to understand the more technical treatment issues when they were presented verbally in a treatment forum format.
African women also did this through listening to local community radio stations, such as Spectrum Radio – ‘Health Africa’.
There was resistance to accessing treatment information through phone lines, stating that phone lines were impersonal with radio being more personal.
Many had a fear of asking too many questions of their doctors about HIV and their health and felt that because of this they did not get enough information from them. With this in mind there was particularly strong support for the need for extra information from doctors about side effects of HIV therapy so that when they happened it was not a surprise and also better advice on how to manage these side effects and knowing what to look for. Guidance was sought on what you can ask your doctor.
There was a request for greater access to ‘others’ in the clinic healthcare team such as dieticians. It was suggested that this would be a good way to address people’s concerns about simple issues like diarrhoea - was this type of symptom related to HIV or was it due to the medication?
It was felt in the group that many in the African communities prefer spoken resources rather than written. More regular treatment forums than are currently being offered at present were requested although only one person in the group went regularly to treatment forums currently offered by NAM.
There was a request for greater sharing of information between clinics on what trials are available and where. There was also a discussion about engaging local newspapers to ‘open debates’ on living with HIV.
The group were then asked if they each would provide a verbal answer to the following two questions:
White men attending said they were generally happy with both printed and electronic information, although one person said the amount of information can be overwhelming. One man said he goes to ‘The Body’, a US website, for information on side effects and social effects.
Some African women present were happy with information but others also thought there was too much information at times and too many leaflets. One woman said she found Positive Nation very easy to read.
White men said they would like to have more involvement from local communities for support. Information and support for newly diagnosed people as soon as they are diagnosed was highlighted:
“I was recently newly diagnosed and was just told what treatment to take by my doctor but wish I had been able to have a chat with others before starting therapy, just to give me extra reassurance”
African women said that they would like more treatment forums and some ‘lighter’ provision, possibly in the form of music and drama. One woman said:
“Cannot say really, there is probably too much already but more simple provision using cartoons or similar”
Many people from African communities prefer spoken resources, especially via the radio
Some people found the volume of information overwhelming
Most people are happy with written treatment information currently available
HIV organisations should provide informal treatment forums more often
HIV/GUM clinics should share information on and availability of clinical trials
There should be more access to dieticians, adherence nurses and other specialists at HIV/GUM clinics or in the community
This workshop was evaluated by 18 people
The average age was 45
Gender
8 male, 8 female, 2 not stated
Ethnicity
5 white, 11 black African, 2 not stated
Sexuality
10 heterosexual, 3 gay, 3 not stated
Usefulness
Very useful |
Useful |
Not useful |
56%(10) |
44% (8) |
0% (0) |
NOBODY said not useful
6 people set themselves action points:
Get more information as possible
Keep better informed
Will try to join UKC panel
Try & link community media activists to issues
Keep updated
Adhere
Move on to Living In Rural Communities