The Four Modules General Public Module

In the absence o f a cure or vaccine for AIDS/HIV, education is recognised as the most effective way to fight this pandemic. The way HIV is transmitted means that certain behavioural changes by individuals can greatly reduce their risk of contracting the virus. Therefore, it is essential that members of the general public as well as those at higher risk, are fully informed o f the precautions which they should take.

The Government, recognising the threats posed by the pandemic, ran a number of

national campaigns in 1986 and 1987 to educate the public. This included

extensive advertising in newspapers, posters, radio and television broadcasts and the delivery o f a leaflet on AIDS to every household in the United Kingdom. These campaigns were successful at the time in that more people became aware of the problem and realised how it may affect them individually. However, the resources required for such campaigns means that they cannot be run on a regular basis, but this is precisely what is required for them to be successful in the long term.

The General Public module was built to meet the information demands of most people. It was regarded as the most important module because it addressed the greatest audience and because everyone is potentially at risk o f catching the virus. It also proved helpful to experts who found that much of their valuable time was being taken up in answering general telephone calls from those worried about

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AIDS/HIV. By installing the General Public system in their secretary's room, it was found that the secretary was able to use the system to answer most o f these queries. This gave the expert more time to carry out vital clinical duties.

The General Public module was installed in various locations for formal and

informal evaluations. The details of these and the results and findings are

described later (see section 1.5.5.). The way the information was structured reflected the needs o f different user groups which ranged from the experts themselves, people considering whether to take the HIV antibody test, those already infected with the virus to information for employers, teachers and school children.

It is important to appreciate that the General Public module contains quite

extensive details on issues of major importance to the general public. For

example, in the transmission section of the system, the user is presented with a list of ways in which the virus cannot be transmitted. Upon selection of one of these items (e.g. insects or saliva), the user sees a detailed report including evidence o f the way the virus is not transmitted in this way (see Appendix A). From earlier

evaluations, it was discovered that the users were not satisfied with just "No, you

cannot catch HIVfrom insects".

The General Public module contains over 220 reports and is the largest o f the four modules. The top-level menu headings o f this module are given below with brief details of the contents under each heading:

1) Definitions, Causes, Origins of AIDS/HIV - this provides information on the definition of AIDS, the definition of HIV, causes and origins of AIDS/HIV.

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2) Medical Aspects of AIDS/HIV - describes the most important clinical manifestations o f AIDS, AIDS related conditions, possible symptoms, incubation period and similar related topics.

3) AIDS/HIV Risk Groups - puts into perspective the groups of people at risk, those assumed to be at risk including health and social workers, and the risk to women.

4) Advice Related to the AIDS/HIV Test - gives advice on the HIV antibody test, the implications o f a negative result or a positive result, its reliability, what to consider before taking it and the places where it can be taken. There is a section giving advice/Information for someone with AIDS/HIV. This is a section in its own right and includes sub-sections on how to take care of yourself and others around you, support agencies, housing advice, social security and other benefits.

5) Transmission of AIDS/HIV - clarifies much of the confusion over the ways AIDS/HIV can and cannot be transmitted by giving detailed reports on each route. There is also a section on how the risk of transmission can be reduced by taking certain precautions.

6) AIDS/HIV Statistics - gives the numbers o f AIDS and HIV cases in the U.K., the World Health Organisation (WHO) European Region and around the

world. The UK section gives the number of AIDS and HIV cases by

transmission characteristics, by age and sex, by country and by region.

7) AIDS and Children at School - educating school teachers and school children about AIDS/HIV has always been an area o f great importance. This section

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covers health education, infection control guidelines, the responsibilities of the school, how to educate pupils about transmission and the risks of activities commonly undertaken at school.

8) AIDS and Employment - advice is provided for both the employer and his employees including the employer's responsibilities, the rights o f HIV infected employees, the risk to colleagues, and his statutory rights if dismissed.

9) AIDS and First-Aid - describes the risks involved and the significance of AIDS for first-aiders. There is also a section giving guidelines for disinfecting manikins.

10) AIDS and travel - a useful section for those travelling abroad. The number o f AIDS cases around the world are given by each country and the procedures they are employing to contain the pandemic.

11) Sources for Advice, Help and Further Information - this section gives the names, addresses and telephone numbers o f various organisations that provide help, advice and support for those worried about AIDS/HIV, those with HIV infection, and their family, friends and relatives.

Guidelines Module

The Guidelines module is based mainly on the St. Mary's Guidelines for Control of Infection of HIV (St. Mary's Hospital 1987) and the guidelines from the Amalgamated Committee on Disease Pathogens (COHSE 1987). These were supplemented after demonstrations and interviews with experts.

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Guidelines for controlling infection are vital for the effective management of any contagious disease. The absence of such guidelines can lead to unnecessary suffering, deaths and incurment o f very large costs (DHSS 1976).

The Guidelines module had been designed to provide health professionals, including nurses and occupational health workers, expert advice on how to act in particular situations with respect to caring for the patient and preventing the spread o f infection. It provides advice in the form of succinct reports which can be accessed quickly and easily through menus or keywords.

The Guidelines module covers the following areas:

1 ) Basic Nursing Care - how to care for the patient including psychological care, symptoms to look for and the precautions to take.

2) Care of Infected Bodies - an important section detailing the procedure for disposing the bodies o f AIDS/HIV patients, the clothing that must be worn depending on the diseases that the patient died from, and the last offices that should be given.

3) Infection Control Pack - this is by far the largest of the three sections and covers AIDS/HIV in the hospital, community and at home. Information is provided on the care of equipment, cleaning and disposal, procedure for accidents, protective clothing, and specimen collection in wards, theatres, maternity, cardiology and radiology. The purpose of the various policies is also provided.

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Counselling Module

The Counselling module was developed to act as an on-line assistant for counsellors although it can also be used as a training aid for potential counsellors. The importance of counselling led to various counselling courses for AIDS/HIV around the country. Anyone considering taking the HIV antibody test had to have compulsory 'pre-test' counselling. Then, if they decided to have the test, they would need 'post-test' counselling after they received the result o f their test. If they were found positive, they required 'on-going' counselling.

Counselling was also important for many people who were still worried even though they fell into a very low risk group. There was a need for everyone to be informed, whether they were positive, negative or did not know, to consider safer sex: if they were negative to protect themselves; if they were positive to protect others and to avoid catching other diseases.

Counselling affected not only those who were positive but also their lovers, friends and relatives. The importance of communication between those involved with AIDS/HIV has been emphasised by Miller (1987) who writes,

"HIV is not something to fear - it is something to fight. But to fight it effectively, everyone affected - patients, (para) medical staff, and carers (lovers, spouses, families, friends, work colleagues) - must be clear about what this phenomenon means on a social, medical, practical and emotional level. And they must learn to communicate this knowledge effectively."

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The topics covered by the Counselling module are given below with brief details of the contents o f each section:

1) Breaking Bad News to Patients and Relatives - the approach that the counsellor takes to do this is very important.

2) Important Facts to Get Across - this includes facts about the virus, reduction of risk, what not to worry about and what to look out for.

3) Information Which the Counsellor Should Obtain - points out the essential information required from the patient so that adequate counselling can be given.

4) Uncertainty and its Implications - gives advice on the uncertainty o f the test, loss of self-esteem and quality o f life afterwards including sexual, relationship, occupational, physical and social fears.

5) Anxiety - how to recognise anxiety in the patient, the somatic, behavioural and cognitive symptoms, and how to manage it.

6) Depression - the identification and treatment of depression in the patient, explaining the difference between ordinary depression and clinical depression. There is a section on symptoms which includes cognitive features, somatic symptoms, behavioural signs and suicidal thoughts or plans.

7) HIV disorders - this discusses the essential counselling which needs to be given to the patient, counselling requirements, issues arising, obsessional states and neurological effects.

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8) Practicalities - this section contains information on what advice to give on second and follow-up counselling sessions with the patient including safer sex guidelines.

9) Lovers, Friends and Relatives - the reasons for inclusion o f others in counselling and what counselling they should be given depending on whether it is a lover, friend or a relative.

Clinical Module

The Clinical module of the system is the most specialist and has been designed to assist clinicians in the identification, treatment and management of diseases found in AIDS/HIV patients. Therefore, this module assumes that the patient is HIV antibody positive, i.e. he is infected with HIV.

During the development o f the Clinical system, the experts gave advice which had never been written down before. There were two reasons for this, the systematic way the knowledge engineers were eliciting the knowledge from the experts, and because experts were too occupied in their day-to-day clinics and other work, that they never got a chance to write about the experiences they were gaining.

The Clinical module has been divided into different diseases all with the same basic structure, which is as follow:

1) Background - this gives a brief background to the disease with particular emphasis on its relation to AIDS and whether it is included as one o f the diseases listed in the definition of AIDS (WHO 1986).

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2) Possible Signs and Symptoms - this gives a list of the signs and symptoms associated with the disease. If required, it also contains descriptions o f the prevalence and severity of each symptom or sign.

3) Related Disorders - this provides the clinician with a list of other diseases that

he should consider in the diagnosis. He may need to carry out further

investigations to establish a disease or discriminate between a number o f them.

4) Investigations - this details the investigations that should be performed to

ascertain the disease that the clinician is considering. This is important

because many diseases have similar symptoms.

5) Treatments - this provides up-to-date information on treatment regimes being used for the disease in AIDS/HIV patients. The diseases which are present in AIDS/HIV patients (e.g. meningitis) have to be treated differently than in non- AIDS/H1V patients. The treatments are ranked in importance where there are more than one. The clinician is warned where there are possible interactions between diseases and treatments.

6) Prophylaxis - this lists the prophylactic regimes for the disease being considered. Palliative measures are described when the condition (e.g. a typical mycobacteriosis) has no known treatments and no prophylactic regimes.

7) Prognosis - provides information on the prognosis of the disease and its wider implications as a marker of the degree o f compromise o f a person's cell