1. Opening Presentation (ICN) – AIDS in Europe

The opening presentation at the EANAC conference made a number of interesting observations, not least that in relation to HIV infection, Europe is divided. In the West of Europe (including UK), infection is still predominantly through homosexual contact. In the South (including Spain and Italy), the use of intravenous drugs is the main route of transmission. In the East however, particularly in those countries that have recently become part of the European collective following the demise of Communism (eg. Poland and Romania), women, children and sex workers appear to be the main groups affected by HIV.

These comments are substantiated by statistics released by the European Centre for the Epidemiological Monitoring of AIDS (1999) and the World Health Organisation.

Globally, the Southern Hemisphere is worst affected by HIV, and organisation in the North able to offer support should be working towards networking and developing international specialist groups.

2. AIDS prevention in Switzerland - Flavia Schlegel

The ‘Stop AIDS’ programme became the best known mass medial campaign in Switzerland, and was developed following co-ordination between drug and HIV organisations, It included the introduction of needle exchanges.

Early in the 1980s, when HIV first appeared in Switzerland, the government came under pressure from gays and HIV groups to act. Three levels of intervention were introduced – the first was to establish an overall aim – to prevent HIV infection and promote solidarity amongst people who were infected. The underpinning philosophy was not to compel people to comply with health promotion advice, but to empower them to learn, and protect themselves. Also, there was an encouragement to integrate and not ostracise. The Swiss government accepted that HIV was a ‘social problem’, and the resulting strategy heralded a new era in public health. It included a consideration of other issues that affected those at risk of HIV infection – the social and domestic conditions, language and other factors (the use of IV drugs; refugee status).

The second and third levels of intervention comprised of community action and addressing the general population (‘Stop AIDS’) respectively.

Positive Effects

• the campaign was able to maintain a positive demeanour
• a national documentation centre was established, containing up to date information relating to HIV, and for use as a resource for schools etc.

Future challenges

An apposite comment, also a feature at the AIDS Conference held in Geneva a few months before, was made. Globally, HIV is developing into a pandemic, whilst in the West the virus is still largely contained within specific client groups. Switzerland, in common with many other European countries, has seen a marked reduction in the number of reported AIDS cases new HIV infections, and in the progression to AIDS, and this comment is supported by statistics provided by the WHO.

The short and long term implications of combination therapy, or highly antiretroviral therapy (HAART) are still largely unknown – including the need for psychological support for those on treatment.

Implications of longer survival:

• wider ‘window’ for sexual activity, need for pensions, employment etc.
• closing of HIV specific Units
• ‘normalisation’ of HIV – budgetary and organisational issues are moving HIV into the mainstream of health structures, in competition with other groups – is this a trivialisation of HIV ?
• at the limits of prevention, rates of infection will decrease, and people living with HIV (and not progressing to HIV) will increase – this is also a problem facing other European countries

Concluding comments – assumptions of HIV policy in Switzerland

• prevention is imperative
• addressing problems of compliance and resistance will become paramount
• vaccinations will not be available for at least 5 years
• HIV as a pandemic will fast develop world wide
• HIV will in Switzerland effect groups difficult to reach

Target areas:

• Health promotion
• Prevention
• Improving the effectiveness of therapy and diagnosis
• Development of knowledge and skills transfer
• Development of quality measures

3. AIDS and Switzerland - Walter Hirz

In the early days in Switzerland (as was common in most countries facing HIV for the first time) AIDS was perceived as a ‘gay’ disease, and remote from the mainstream experience of populations and governmental organisations alike. HIV was seen as lethal and highly infectious (crematoriums were advised to construct extra ovens !); mean survival time was 6 months from diagnosis. Over the past years, however, services have been established, and in Basle (the base of the speaker), HIV tests are freely available (and 2000 are carried out per year), and HIV information is liberally disseminated to schools.

Since HIV first appeared in Switzerland, approx. 25000 tests have been carried out, and there are currently around 1300 HIV+ve individuals living in the city. Prejudice in the early days was common, and to counter this people with HIV were taken into schools to talk to pupils Generally, infected individuals were mute about their condition through fear of recrimination. This was based upon a general perception that AIDS was (amongst other things) God’s punishment for homosexuality (this was felt by some patients as well). PWA regularly were refused employment, and hospital operating theatres placed operations at the end of the list. HIV+ve people feared rejection from friends, and inaccurate information disseminated by the media complicated the situation further. The Basle Lighthouse was initiated to provide rehabilitation services for individuals discharged from hospital, and for general support (not least psychological – the fear of disease and death was very real amongst those who were infected).

Even today, there is still a degree of shame felt by people with HIV, and there is currently a need in Switzerland (and I’m sure other countries) to address taboo of sexuality. Correct information is required to address the many myths at work in the Swiss population (not least the nursing staff, whose infection control practices seem haphazard and not based on sound theory).

Generally, because HIV presents death as a result of sexuality, it touches deep fears that are rarely addressed. In addition, there is an exaggerated risk of contagion, amplified still further by the notion that HIV is immoral. Sexuality is a topic rarely addressed at an adequate level – and deviancy (an ambiguous term at the best of times) is still a central evaluative factor used to judge an individual’s behaviour. Sexuality (and its many shades of existence) should perhaps be seen as a basic human need (such as eating and drinking), and (especially carers) individuals need to address their own sexuality.

The innocence/guilt continuum is also still very strong in Switzerland – a child with HIV is still ‘a poor little thing’, and the problem may actually be in ourselves, when we judge HIV as being different, say, from cancer.

In conclusion: AIDS is an unmasking disease, and at this stage (after 10 years, a clear stance needs to be developed that is free from prejudice, and takes a positive view towards that most basic of human functions – sexuality.

4. Drug Policy in Switzerland - Attilio Stoppa

Switzerland, similar to other countries in Europe, developed a needle exchange policy that met with much resistance and proved to provoke numerous reactions. Addictive behaviour has been researched endlessly, and falls into four groups:

• Physiological – associated with the pleasure centres in the brain
• Sociological – certain social conditions favour the use of drugs
• Psychological – individual and personal factors that predispose to the use of drugs
• Economical – market mechanisms that lead to drug taking

All these theoretical areas have, of course, one thing in common: they describe only 1 part of the picture, and are indeed partial realities. Risk research is an important field, and has identified a number of risk factors, that include: addictive qualities of the drug; availability of the drug; lack of awareness of risk; risk of self medication.

Protective factors – ie. factors that protect against the taking of drugs:

• Social integration
• Social control (ie. of social functioning)
• Social competence

The constellation of risks can differ from region to region, and essentially there is no simple explanation for drug taking.

Developing a policy in Switzerland led to the adoption of 4 pillars:

• Prevention
• Therapy
• Harm reduction
• Repression [IH – I think this is better translated as encouraging withdrawal] that is ethical, humane and effective

The nature of the drugs problem in Switzerland – many individuals have ‘tried’ drugs, and out of the 7m Swiss population:

• 25% have tried cannabis
• <3% use ‘hard’ drugs (eg. heroine or cocaine)
• 3.5% have tried ecstasy
• there are 30,000 people addicted to hard drugs
• 30% of the population smoke (90% of smokers addicted)
• 80% drink alcohol (2.5% addicted)
• 1.5% are addicted to their medication
• 300,000 – 400,000 occasional/regular cannabis users

There is therefore an over estimation in the public perception of the ‘drug problem’, and the ‘problem’ is not new in Switzerland, with the first regulatory legislation passed in 1924.

Regarding therapy – 100 institutions across Switzerland offer 1750 treatment slots. Currently, 14,000 people are undertaking the methadone programme, which takes 2 years to complete. After 2 years, 42% are abstinent.

5. AIDS and Oncology – Common Ground in Palliation – Verena Tuschinger

Cancer has been around for a long time, and unlike HIV, people with cancer have no co-ordinated representation, and is therefore a disease of individuals, which fits well into the biomedical model, in which the organ and/or symptoms are treated. The person is ‘silent’ with their disease, and rarely aware of his/her rights. Knowledge is held in the hands of physicians. In spite of much research, mortality in cancer is largely unchanged, with about 50% dying of the disease. has been around for a long time, and unlike HIV, people with cancer have no co-ordinated representation, and is therefore a disease of individuals, which fits well into the biomedical model, in which the organ and/or symptoms are treated. The person is ‘silent’ with their disease, and rarely aware of his/her rights. Knowledge is held in the hands of physicians. In spite of much research, mortality in cancer is largely unchanged, with about 50% dying of the disease.

HIV – pressure groups fight for the rights of large clusters of people with AIDS – World AIDS Day is recognised in numerous countries. There has been a rapid development in palliative care, and with the advent of combination therapy in the West, a degree of euphoria and translation of certainty of death to hope of life. – pressure groups fight for the rights of large clusters of people with AIDS – World AIDS Day is recognised in numerous countries. There has been a rapid development in palliative care, and with the advent of combination therapy in the West, a degree of euphoria and translation of certainty of death to hope of life.

But, with the growth of combination therapy, there is a danger that the ‘power’ may move back into the hands of medics, pharmaceutical companies etc, and away from palliative care. For example, the London Lighthouse long term care facility is being reduced, and research into HIV therapy is on the increase.

General issues of care and palliation (applies to HIV and cancer) – patients not always willing to talk about their condition, and in some cases s/he is in pain right up until the time of death. There is the potential for an adversarial rift between medical treatment and palliative care, with the latter being seen as a philosophy rather than a care system. Also, hopes of remission persist until very late in the disease process, sometimes limiting the ability of the person to ‘prepare’ for his or her death.

Concluding points – palliative medicine includes the prevention and relief of physical and psychological symptoms and suffering through early treatment of patients with psychosocial problems and incurable diseases. People involved should include staff and relatives, and treatment should be accessible at all stages of disease, and at bereavement. NB. Should not just be evident at the time of death, but as an ongoing process whenever it is needed.

The person is a living human being until the very ‘end’, and patient care should not be confined to the last stages, but from the point of diagnosis until after death. This equates with both cancer and HIV.

6. Becoming Partners in Caring – Rebecca Spirig

This report from a study carried out in the United Sates. Caring is a central concept in nursing, the essence of nursing. An interpretation of caring depends upon experience and background, and studies relating to people with chronic illness rarely address HIV/AIDS.

This study used interpretative phenomenology, which studies everyday life of human beings. As a method, it aims to understand a phenomenon in a context bound and culturally based environment, which will become visible and understandable. This approach also includes the effect a researcher has on the research field – thus, because the researcher was a woman in a largely male sample, then this will have effected the results.

Using a convenience sample of 7, unstructured interviews obtained data that were analysed using Benner’s model of caring.

Results – 2 categories emerged as significant in the development of a partnership between the carer and person with AIDS (PWA).

Letting go – letting go of independence and accepting the support of others. Key features of this construct included: living a normal life; needing day to day support; transferring to a residential home for long term support. – letting go of independence and accepting the support of others. Key features of this construct included: living a normal life; needing day to day support; transferring to a residential home for long term support.

Becoming partners (‘I’ becomes ‘we’) – a reciprocal relationship with the carer(s) (could include family) based on respect and commitment. Key features of this construct included: being present; treating and being treated with respect (though this depends on the attitudes of others); believing in the future and staying hopeful; living with AIDS; readiness to learn from each other – increasing tolerance is a sign of mutual growing. (‘I’ becomes ‘we’) – a reciprocal relationship with the carer(s) (could include family) based on respect and commitment. Key features of this construct included: being present; treating and being treated with respect (though this depends on the attitudes of others); believing in the future and staying hopeful; living with AIDS; readiness to learn from each other – increasing tolerance is a sign of mutual growing.

From this, various additional points were gleaned:

• interviewees developed strategies to live with AIDS
• normalising strategy were powerful – keeping the diagnosis secret was common, and this could be a result of the prevailing negative attitudes and stigma held towards PWA
• caring and becoming a partner entailed the relationship being based on; equality, and recognising differences (‘humanistic caring’); on solidarity and mutual support
• each individuals experience will be different

Problems with the study were identified. Firstly, the sample was Caucasian – different features may exist for non-Europeans. Secondly, using this methodology, generalisation is not possible, though general principles can be gleaned and applied in practice. These are:

• nurses need to be more aware of chronic illness, especially the evolution of illness, and the personal experience of individuals
• nurses need to know more about caring
• long term relationships with PWA needs addressing further, with the notion of partnership being highlighted
• in the future, families may be the most important providers of care

7. HIV+ve Persons as Experts – 12 years +ve, and works at the Zurich Lighthouse

This was an enlightening sessions presented by a person with HIV, and giving an insight into the virus both unique and challenging. First reactions to being diagnosed HIV +ve was shock, though not much beyond that (he was caring for a friend in the final stages of the illness).

Issues surrounding highly active retroviral therapy (HAART) – compliance depends (among other things) on the actual combination and number of tablets that are required. Also (especially in the USA) passing through customs with huge bags of tablets can cause problems !

Sex life – openness with a partner is vital, as well as the use of condoms.

The most piercing contribution was what do I need from people who are not HIV+ve ?:

• more acceptance and understanding
• don’t automatically ask about HIV status
• nursing staff should be encouraged to undertake continuing education and address issues in his/her own life (this will help develop a real partnership

Personal facts – blood tests every 3 months; cannot eat fish and certain juices (reacts with therapy); problems with diarrhoea

The future – losing family, friends, and personal control, though generally things look ‘rosy’. – losing family, friends, and personal control, though generally things look ‘rosy’.

Concurrent sessions:

8. HIV and Myth: Cultural narrative in the perception of HIV – Ian Hodgson (UK)

Cultural narratives, such as myth, folk-tale and legend, play a key role in underpinning and perpetuating the beliefs of both traditional and ‘literate’ cultures. Myth in particular is central to this process, and contains the most significant elements that form the value system of a culture - the ‘lens’ through which the world is viewed, providing meaning and order within an often chaotic and unpredictable environment. Common themes in myth include: creation and the role of a creator; epic journeys and rite of passage experiences; death, and the notion of ‘right’ and ‘wrong’ death; purification through sacrifice. In our own culture, the narratives of the past remain with us, ‘…lining the walls of our interior system of belief like shards of broken pottery at an archaeological site’ (Moyers, 1988).

This presentation will provided an overview of how myth, legend and folklore are used by various cultures to explain and interpret social events consistent with the transmission of disease (ie. epidemiological phenomena).

The discussion will centred particularly upon HIV/AIDS, and the presentation:

• addressed narratives that pertain specifically to what is almost universally perceived as an ‘unnatural’ disease (ie. non-curable)
• discussed the wider metaphors HIV/AIDS yields, such as societal breakdown and ‘moral germ conflation’ (Nemeroff and Rozin, 1994)
• cited recent studies describing the perception of HIV/AIDS by health care workers, and interpret them using a framework derived from a variety of myths

Knowledge of a culture for effective intervention (Helman, 1990), and vital for the promotion of behaviour conducive to societal integrity. To make education truly effective in an empowering and humanistic way, then all determinants of negative attitudes should be exposed. This paper argued that an awareness of underlying (and often subliminal) cultural narratives will assist educators and individuals in addressing those attitudes and perceptions defining a negative perception of people with HIV/AIDS.

9. Compliance and the Nurses’ Role (Holland)

Measuring compliance with therapy:

• clinical observation
• talking to the patient
• counting the pills
• measuring blood levels
• electronic monitoring

The determinants of compliance are numerous, though not influenced by age or social status. Common factors seem to be: social support; personal views on disease (linked to cultural background); insight into treatment affects; duration and complexity of treatment; side effects; continuity of care (support during treatment).

Ways of improving compliance include: nursing interventions; increasing knowledge and motivation; involving family and friends; referring to a role model. Key issues in treatment compliance are: a desire not to disclose (eg. at work); amount of tablets (which can be up to 30 per day); frequency (can be up to 5 per day); strictness of the intake schedule; dietary restrictions (eg. some treatments require an empty stomach, other high fat food); side effects of treatment (which can include diarrhoea, anaemia, neuropathy, lipodystrophy, the fears of life long therapy).

Some practical points relating to the care of people taking highly active retroviral therapy (HAART).

• Encourage continuing care and support, and development of social networks
• Gather information and encourage prescription of less complicated drug regimes
• Use of (consented) placebo use prior to treatment, to identify initial problems
• Continue monitoring – 7-8 months is the most significant for non-compliance
• Accept that non-compliance is often because of environmental (rather than personal) factors – treatment provides people with HIV with a second chance, and most are greatly afraid of treatment failure

10. Burnout in AIDS Care – Mark Hayter (UK)

Brief summary of session: using a mixed methodology (quantitative questionnaire and qualitative interview), elements relating to burnout amongst community HIV nurses were identified.

Features that exacerbated the risk of burnout included: isolation (in practice); lack of professional and organisational support; negative perception of their area of practice by others. To address this – there is a clear need for clinical supervision, though where possible professional autonomy should be maintained.

11. Body Talk - Andy Shave (UK)

Summary study investigating nurses’ openness in discussing sexuality with patients on an HIV unit in the UK.

Carried out in the Kobler Centre – 2000 HIV+ve people are seen each year, and this study comprised of a 3 months ‘lookback’ in nursing documentation and care planning (104 sets of notes). Of these, 20 had AIDS; 19 HIV (asymptomatic); 24 HIV (symptomatic); 23 had no record of sexuality at all.

Results showed that in many cases, sexual practices were not addressed during the time in hospital, and therefore by implication no guidance or advice given as to safe practice. In the ‘sexuality’ section, many comments included: husband; has wife; 2 young children; and in numerous cases in which there were clear HIV-related pathologies, no comments were made in the notes about sexuality or sexual practices.

Most nurses are clearly not adept at discussing sexuality, even in the cases of patients whom had clear conditions that required some nursing/health promotion input. Also, there seemed a reluctance to discuss sexuality with older men

Thus the conclusions from this study:

• Nurses find it difficult to address sexual health needs
• There is a requirement for a specific tool to enable nurses to discuss sexuality with patients
• There seems to be a more advanced level of skill in GUM nurses
• Further questions that need addressing – does the gender of the nurse make a difference ?

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