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A.I.D.S. and Self Management

Sharon Oye, Director of Dublin AIDS Alliance, talks to Mary Montaut

Empowering People

Part of our work at Dublin Aids Alliance is to provide support services for people directly infected with H.I.V. and those who are affected around them, and I would see psychotherapy mainly in relation to our support services. The sort of people who come in here are living with H.I.V. and A.I.D.S., usually carers or partners, and most are probably around the early thirties age group. A lot of them come from what is currently classed as socially/economically deprived backgrounds – they would have experience of injecting drugs and they generally have very low incomes or no incomes. Now, they are used to the medical establishment – they are used to going to hospitals where control is taken away from them; so we feel it’s really important to promote a sense of empowerment for these people, that they should learn about and learn to manage their own health care. And so we adopt a holistic approach to health care. Psychotherapy is an important part of that. I prefer to call it “counselling” rather than “psychotherapy”, I suppose, because the word “psychotherapy” has medical connotations which many of our clients would find threatening.

Volunteer Counsellors

While we do not employ paid counsellors for financial reasons, we have vol­unteers who are qualified holistic therapists who would use counselling as part of the overall treatment. For example, one of our current therapies is called Polarity Therapy, which involves manipulating shakras and energy fields in the body to instigate health and a sense of well-being and healing. People take on the therapy, it becomes part of their life style and as they become more familiar with the therapist, they start to open up and talk more and this is all part of the healing process, so in that sense it is very important.

Clinical Setting

We would like to employ counsellors, and indeed until 1995 we had a full-time counsellor, but the Health Board felt that there were too many counsel­lors working in the area of H.I.V./A.I.D.S. I suppose that is questionable, but they felt that there was too much duplication and so we didn’t receive fund­ing to employ counsellors. Normally if people come in to Dublin Aids Alliance requiring a specific counselling service, we refer them on to the hospitals, but I don’t believe that’s necessarily what those people are looking for. Not everybody wants to go into a clinical setting to deal with their issues. When the issues are around H.I.V./A.I.D.S. – if they’re a partner or a carrier or they’ve had an ex-lover, perhaps when somebody close has died and therefore it’s the H.I.V. aspect that has brought them here in the first place – then we would encourage people to try the holistic treatments here.

Positive Women’s Group

We sometimes run personal development or self-help courses. Last year we ran a self-development course for women who were living with H.I.V., because we felt that women for the most part were not accessing the service. We knew that this was to do with women not being assertive around their own health care and not being informed about or even wanting to cater for their own needs. So we organized this self-help/personal development course and the issues that were explored were around self-esteem, assertiveness, sexuality, negotiating safer sex – on many different levels. It was quite successful and as a result, the women who participated set up a Positive Women’s Group, which is now in operation and meets once a week in the mornings here as a peer support group amongst themselves. So that’s where the self-development/self-help comes in, with courses that are very structured. I think one of the volunteer therapists hopes to form a group to work on her area of interest which is bereavement and grief and death.

Holistic Approach

All the therapy within our community support and treatment services is very specific, providing specific holistic treatments. The holistic treatments vary from year to year depending on the specializations of the therapists that volunteer their time and come to work here. We always have Massage, that seems to be the most popular, and we provide Massage on site in the hospi­tals. But aside from Massage, last year we had Acupuncture and Active Balance and Reflexology. This year we have Massage, but the woman who did Active Balance has gone and now we have Polarity Therapy, Reflexology and Herbal Treatment.Within the rest of our support services, we have a drop-in specifically for IV drug users operating on Wednesday afternoons. Most of the people who come in are on maintenance programmes, and the support that’s provided there is really peer support, as well as providing information with trained staff giving advice and encouraging people to talk – having a safe space.

Social Issues

We like to think of ourselves as being open and accessible and providing immediate, accessible services for people. When people think of H.I.V./ A.I.D.S., they tend to think of the treatment side. In particular, professionals tend to think of people in terms of being patients, a concept also held by psychotherapists and counsellors and social workers – people are automatically classified and we find that disempowers them. We don’t see therapy and treatment as being central to meeting the needs of people living with H.I.V./ A.I.D.S. Historically, we have found that, within the com­munities disproportionately affected by H.I.V./A.I.D.S. (ie gay men, ie Iv drug users), the issues around, say, how they contracted the virus as a group, or how the virus was allowed to decimate the gay community, or how slow services were to respond, or how even now there are so few services specifically for gay men – these are the issues that have to be dealt with first. They are also central to the needs of people living with H.I.V./ A.I.D.S., so we see it as being one of our roles to promote equality, to promote equal opportunity, to create an awareness of the need to counter oppression and prejudice because it is not just the medical, it’s the social issues for gay men that are extremely important. They should be able to go into a health service where their sexuality is not going to be an issue, or how they contracted the virus is not going to be an issue. That is not necessarily to do with treatment or therapy, that’s to do with changing the system, that’s to do with educating the care-givers and the medical, legal and educational establishments.In the same way with IV drug users – their H.I.V. positive status does not dictate how they live their lives, it is not central to them. More often the key issues for them are financial, like where are they going to get the money for their next hit, how are they going to stop their kids from getting into the same sort of cycle. These are the issues for people who are IV drug users but the H.I.V. positive side of it is not what is central to them. So I think that, in order to facilitate people to manage their own health care, you have to deal with all those other issues, you have to take a holistic approach, because if you just deal with one aspect of it, it doesn’t work.

Pre- and Post-Test Counselling

H.I.V./A.I.D.S. counselling specifically involves pre- and post- test counselling, when people are going for tests. It started with testing because when people are going to test, they need to be talked to beforehand about the implications of testing, and about if they’re in the right frame of mind for testing; and then when they get the results of the test, they’re going to need to speak to a counsellor again – what if it’s positive, what if it’s negative, what changes will it mean in their lives? So pre- and post-test counselling is very limited, and is done by the counsellors in the clinic. But if I got a positive diagnosis and I’d had my post-test counselling and I needed to talk more about it, with issues and anger coming up over months, I can’t imagine that I would go back to a clinical setting to deal with all that. I don’t know what I would do at that point – I’d hope that there would be a counselling service that could deal with my issues outside of that clinical setting. That is why I do feel there is a need for organizations like DAA to have a counselling service – but unfortunately resources don’t allow it at the moment. And then, although the statutory services cater for the individual who is going for a test or who has tested positive, they don’t cater for the people who are affected around that. So it then falls to the voluntary sector to provide a safety net for those people. Often positive people have told me that, when they’ve looked back with hindsight, they’ve found that it’s their family members who are affected worse than they are themselves. Everybody is looking to the needs of the individual who has tested positive, and everybody is providing them with information – but the family members can’t ask what’s it like, or what is going to happen in the next ten years – they can’t ask these sorts of questions of the person who has tested positive, so where do they go with these dilemmas, these questions, these frustrations? That is what H.I.V. counselling should be about, dealing with those issues.

A.I.D.S./H.I.V. Conference

I was at the Eleventh International Conference on A.I.D.S. in Vancouver, Canada, recently. These Conferences happen every two years and are an opportunity for everyone to get together, be they community workers at the coal face or top scientists – everybody can get together and discuss and cogitate on the information around and assimilate what’s happening from a global perspective. So it’s important that it’s attended by people who are positive and by family members, as well as by people who are working in the area. Clinical treatments are improving vastly and certainly a lot of the information that came out of the Conference was about new drug treatments. There are now triple combination drug treatments which combine various different types of drugs to stop the virus from invading cells in the first place and then stop it from replicating. When it gets into the body, the virus invades particular types of cells and then it induces those cells to replicate copies of the virus itself. Earlier approaches to treatment attacked the virus from one angle. Initial results from the new approaches are very successful and they are slowing down the progression to A.I.D.S. The side effects are not nearly so bad as they used to be because they now know how to regulate the dosages, so that people can, through drug treatment, holistic services and counselling services, manage the virus themselves, more like a diabetic regime. And if people can manage the virus, then fewer will progress to A.I.D.S. and die. So positive people wall live longer. I’m not sure what the implications of that are for counselling services.

Future Needs

Perhaps the counselling services need to consider this: on the one hand there is very positive information coming from the Clinical Science track of the Confer­ence, but on the other hand, it was disappointing to find that on the Social Science track, very little is being done in the areas of promoting equality, com­batting exclusion and discrimination and that this is still a key issue for people. So maybe this is where counsellors need to look- these social and community issues are really the key issues. And as the drug treatments improve, these are going to become the critical issues of the future.

Dublin Aids Alliance is at 53 Parnell Square, Dublin 1. Tel. 01-873 3799/3065/3408

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