April 24 - 25, 1998
|
Contents |
April 24 - 25, 1998
|
Contents |
1. Introduction
The Second National Austrian GFA Meeting (Phase III) took place in Vienna from April 24 to April 25, 1998. A number of relevant HIV/Aids organizations were invited to discuss conflicting issues in the Austrian Aids policy field which emerged from the previous discussions in the framework of the project (Phase I and Phase II).
The experts invited have been key actors in the field of HIV/Aids for a couple of years; they have at the same time initiated innovative concepts and ideas with respect to the prevention and care of the disease.
In order to yield a fruitful discussion, the dissonant issues, which have emerged in the previous project-phases, have been grouped under specific headings which have been particularly relevant to the Austrian situation. These issues reflect the national specifities as well as the consensus reached by all experts from the four participating countries present at the Phase II International GFA Workshop held in Amsterdam in November 1997.
The Austrian Phase III-workshop started with a discussion on the major changes and innovations which have occurred during the last year (GFA-workshop Phase I was held in June 1997). This was followed by a round of validation and feedback regarding the report as delivered by the project-team. Minor corrections, which were fed back to the project-team, will subsequently be integrated into the final report.
The summary of the discussion pertaining to the main topic areas will be presented below, with each single area representing a number of dissonant issues, i.e. the two poles of different policy options or problems and solutions as perceived by the experts.
2. Main Topic Areas for GFA Phase III in Austria
2.1 Dismantling the Welfare State
Less public funding - New Sources of Financing
Under this heading the continuum between the two poles (availability of less public money for the health and the social welfare fields, in general, as well as for the HIV/Aids field in particular, versus the therefore emerging necessity of organizing money elsewhere, e.g. professional fund-raising, private sponsoring and other new sources of financing) were discussed.
With respect to this topic, new solutions were proposed, e.g. the Aids Hilfe Wien has now employed a full-time professional fund-raiser. This reflects the general idea to professionalize fund-raising, which should help to prevent the negative effects of the continuous dismantling of the welfare state. As for the status quo, the Aids-Hilfen have succeeded in maintaining their annual budgets at the same level, which is perceived by themselves as well as by others as a substantial success.
However, the situation still remains difficult for small organizations in the field of HIV/Aids: for large organizations raising additional funds seems to be much easier than for small ones, for whom it is much more difficult to invest additional resources for this purpose. This could, in the long run, threaten the small organizations in the field of HIV/Aids in particular.
With respect to fund-raising, the main sponsors are still pharmaceutical companies, but organizations receiving money from these sponsors wish to remain independent. A careful selection of projects to be sponsored is therefore necessary. The Austrian experience in this respect shows that fund-raising is relatively easy if organizations are able to offer something in return (i.e. product placement). This means that fund-raising for the organization as such (e.g. overhead costs, financing jobs, etc.) is very difficult since nothing "visible" can be offered to the sponsor. Firms would not support HIV/Aids organizations in this indirect way since the common belief is that the state is responsible for this kind of support. Further problems with respect to fund-raising are the fact that such sponsoring is not tax-deductible. Tax-deduction, however, could be another way of offering something to a potential sponsor. It is not known how HIV/Aids organizations could yield the status of organizations capable of receiving tax-deductible financial support (as in the field of science, the arts, etc.). There is only one purely scientifically operating organization in the field of HIV/Aids (Aids Gesellschaft) which has received this status. It was also mentioned that fund-raising in Vienna seems to be more successful than in the "Bundesländer" (the federal regions). In general, there is no tradition in terms of sponsoring. Thus, HIV/Aids organizations are operating on fairly new ground: the stigma somehow attached to HIV/Aids is still having a negative effect on these endeavours. People are more willing to give money to children with cancer, disabled persons, etc. than to Aids. This behaviour constitutes a vicious circle for small organizations which do not have the power to fight these attitudes. Since the HIV infection rate is also now on the decrease, it will be more difficult to find Aids-related money in the future. This constitutes another challenge for HIV/Aids organisations: it can be assumed that HIV/Aids organizations will be accused of artificially prolonging the HIV/Aids-problem in order to justify their existence. HIV/Aids organizations will have to adapt to this new epidemiological situation and to the population's changing needs (also see sections 2.2 and 2.3). In this respect, the question was raised as to whether such optimism (decreasing new HIV-infections) is justified since it is difficult to forecast developments in the future. The long-term effects of prevention as well as treatment are also currently unknown.
Technocentrism (Medicalisation) - Psychosocial Emphasis
Recently great hope has been placed on the so-called "new drugs", i.e. medication such as antiretroviral combination therapies, in particular in combination with protease inhibitors. Due to the complexity of the drug regime (management of side-effects, development of resistance, how to take the drugs regularly, etc.), pure medical care plays an important role in HIV/Aids management. It has been argued, however, that an emphasis also has to be put on psychosocial care. This is important in order to support the patients' adherence to therapy as well as to offer comprehensive care which takes the psychosocial needs related to HIV/Aids into consideration (integration in the work field, prolonged life expectancy, improving one's quality of life with HIV, etc.).
The "new drugs" have been available on prescription since summer 1996, thus the question is, whether one has had sufficient experience with the drugs: long-term effects of the drugs as well as their long-term effectiveness are widely unknown.
However, the requirement of the "complying patient" may result in a shift of responsibility to the patient: patient-participation in medical decision-making and the patient's autonomy could be turned into the patient's personal responsibility if the medication is effective or not. In the case of ineffectiveness, often feelings of guilt and hopelessness often appear as a result of this patient-centred view. Thus, comprehensive additional psychological and/or psycho social care concepts are asked for. Regional differences in the effectiveness of the medication suggest that the state-of-the-art as well as the physician's knowledge about prescribing the new drugs might also play an important role.
In Austria, the "new drugs" are currently mainly being prescribed by specialized medical centres (Aids-wards and Aids-outpatient clinics, which in most cases are connected to the University hospitals). There are only a few physicians in private practices who are knowledgeable enough to prescribe the new drugs and to care for Aids-patients. In this sense it is a highly centralized system, which is approved by the medical community since it leaves the responsibility for the overall treatment to some specialized units. The responsibility is not being shared, which jeopardizes community-based care for people with HIV/Aids.
The need for the development of adequate psychosocial help to overcome the barriers of pure medical care was emphasised by all experts present at the meeting. However, it was stated that psychosocial services have to be precisely defined given that there are two major directions: to offer help if the "new therapies" do not function, as well as to offer help even if they function effectively: integration in the labour-market, management of side-effects, effects on the quality of life, etc. In this respect the question was also raised as to who should be the professional group to deliver these services: physicians with an additional training in psychosocial care or professional such as psychotherapists, psychologists, social-workers (non-medical professional care-givers, etc.)?
Many of the new service-offers developed by the Wiener Aids-Hilfe, for instance, now reflect these changing needs: there is a shift from self-help and body-oriented offers to job-training, etc.
2.3 Underrepresented Needs Groups
Self Help - Professional Help
Target Groups? Innovations?
With respect to this area, the following "underrepresented needs groups" with specific problems (for a detailed description of the specific problems of these target groups see the interim report) were mentioned:
No significant changes seem to have occurred in the since the discussions at the First National GFA-Meeting. However, it was specified in more detail that the drug-using clientele is a very difficult one, since it is difficult to establish a constructive client-relationship. It is particularly when it comes to delivering client-related services, such as the buddy-system for instance, that the clients' incapability of maintaining such a relationship constitutes a severe problem for the volunteers. Therefore, innovative solutions are needed, e.g. buddy-contracts on time, etc. in order to avoid severe burn-out among the buddies.
A fairly new problem with respect to the health of the drug-using clientele is the increase in Hepatitis-C infections which can be observed in almost all European countries. While this additional health problem may have been in existence for a long time, it is only recently that awareness has been given to this disease. This might not only be due to the development of tests capable of detecting Hepatitis-C infections, but also to a general increase in the awareness of the co-morbidities of infected drug-users. Hepatitis-C is a very common infection among drug-users, with estimations of about 70% to 90% of all drug-users being infected with the virus. Not only are there severe consequences for the health of infected individuals (difficult treatment, chronic disease), but also a severe impact from a public health perspective since infections occur much more easily than in the case of HIV: the virus can be transferred by blood-to-blood contact as well as by route of sexual transmission.
Prevention messages have to take these factors into account. Not only sharing needles constitutes a health-risk, but also that of works, spoons, using the same water, etc. Prevention messages have to be much more precise if they are to prevent severe health damage. In this sense, Hepatitis-C is a much greater health risk than HIV/Aids for the drug-using population. Services for drug-users are again confronted with the difficulties of their clientele to adhere to treatment regimes and service offers. Hepatitis-C might also be seen as a "co-factor" in the development of HIV. The combination of a person suffering from both Hepatitis-C and HIV/Aids is common since being infected with the Hepatitis-C-virus makes individuals more susceptible to HIV. The case of Hepatitis-C might be an even stronger argument in favour of needle-exchange programmes, if prevention messages given out by these programmes take the specifities of the Hepatitis-C routes of transmission into consideration, i.e. offering drug users a chance to learn about these new risks.
With respect to the situation of illegal (as well as legal) migrants, the following issues were raised: the overall complexity of the problem and its relation to the legal situation, a general hostility towards foreigners in this country, as well as the need to be culturally sensitive when it comes to HIV/Aids prevention and care. A great interest in the exchange of expertise on the national level concerning work with migrants and ethnic minorities was also expressed at the workshop.
The negative effects of the existing laws regulating political asylum and the right of foreigners to live in this country were also mentioned. The problem seems to be getting out of hand due to the steady fluctuation of the target group as well as the severe social problems that are connected to it. Organizations in the field of HIV/Aids try to deal with the problem whenever confronted with it, with the main strategy of networking with organizations dealing with the problem in other areas (e.g. "Ausländerberatungsstellen"). However, they are not satisfied about the results they achieve in this area.
The difference between professional work and self-help oriented work was emphasized in all target-groups. Whereas the latter has functioned well with the "first client-generation", for the "second client generation" (see above) the dissonance between facilitating self-help on the one hand and "patronizing" the clients on the other hand seems to have remained unresolved. Clients who have many other social and health problems and who are not used to organizing themselves are difficult to motivate to engage themselves in any kind of self-help. For these groups, being HIV-positive or having Aids is neither a sufficient quality to constitute a group, since as a group they are too heterogeneous. Also for women it is not a sufficient prerequisite to be HIV-infected to get organized. The intrinsic motivation to build women's self-help groups seems to be missing. Although professional helpers often hold the opinion that self-help would be necessary as well as helpful for female clients (since HIV-infection rates are increasing among women due to heterosexual transmission), thus cannot be organized as such from the outside or from "top-down". Networking with all relevant organizations dealing with the target groups from different angles becomes a crucial issue if work with the underrepresented needs groups is to be effective.
2.4 Innovation versus Tradition
Buddy-systems, Informal Networks, Counselling, etc.
Whereas Section 2.3 has dealt with a description of the newly emerging problems in the Aids-field, adequate solutions seem to lie on a continuum between traditional approaches and innovations developed specifically for these problems.
In this sense, some new projects in the field of HIV/Aids were mentioned, which aim to develop feasible solutions for these new problems (e.g. a project for prostitutes and their clients in Vorarlberg, which aims to prevent HIV infections through increased condom-use in the three bordering regions, Vorarlberg, Baden-Württemberg and some cantons (federal regions) of Switzerland.
The project HIV-Mobil serves as another example for changing service-offers to HIV-infected persons. HIV-Mobil offers services directly to the people affected, but tries to facilitate networking by integrating all existing care-activities. Trained staff, e.g. social workers, will assist the person in need to find his or her most adequate service-offer in the area. Only in cases where services are missing, will "HIV-Mobil" jump in and help directly.
Furthermore, projects or services with a wide range of established expertise in the field of HIV/Aids also have to adapt to new clients, structures and problems (such as the buddy-system, which caused a change in the working-conditions for the volunteers for instance, i.e. issuing shorter contracts, emphasizing the new problems in training and supervision, etc.). The buddy-system now has a very mixed clientele, with roughly one third women. It has been very active in Vienna, whereas in other regions it has often had difficulties to get off the ground. A possible reasons for this weak response could be that persons infected with HIV still fear the loss of anonymity in rural regions more than in big cities. In Upper-Austria (Aids-Hilfe Oberösterreich) the buddy-system operates with an approach very much targeted towards practical support and help for persons infected with HIV, and in Tyrol an integrated project for home-care functions works very much like the buddy-system (MOHI in Innsbruck). Although being an inclusive organization, MOHI offers training and support of a high standard to professionals and volunteers in the area of HIV/Aids.
Centralization - Decentralization
Evaluation - Control
Direct - Indirect Approach to Power
The fact that Aids-policy in Austria has been centrally integrated ("top-down strategies"), at least when it comes to national policies, might play a role in the reluctance of many organizations in the field to network on a formal and central basis (e.g. set up a national umbrella-organization). In most cases, national HIV/Aids-policies have been formulated without the participation of CBOs and NGOs, thus many organizations no longer see the relevance of a national umbrella-organization.
This is also reflected on the level of inter-organizational relations. The Aids-Hilfen, as the most important actors in the field, act as seven independent, autonomous organizations although they generally have the same functions, goals and perspectives. Their own history might also have an influence on this fact; this will be explained in more detail in part 2.6 (see below). There was no substantial discussion around this dissonant issue other than this, i.e. centralization - decentralization. With respect to the issue "evaluation vs. control", a number of substantial issues were discussed: first of all it was mentioned that only a very limited number of projects have been or will be evaluated in a scientific sense (e.g. the EU-project "Self Care Manual"). Some organizations however, like the Wiener Aids-Hilfe for instance, have developed quality standards for their own work. Quality standards have also been developed by a network of inclusive care-organizations in order to assure the quality of home care delivered in the field of HIV/Aids. For most organizations, however, scientific evaluation cannot be afforded due to the limited resources they work with. Client statistics, which have to be filed and reported to the Ministry of Health (as is the case with the Aids-Hilfen), cannot be seen as a tool of scientific evaluation. On the contrary, many organizations feel that it rather serves a control purpose as it has often been linked to budgetary negotiations. While a lot of resources go into putting these figures together, the organizations felt that whatever purpose these statistics may serve, they do not help to evaluate the work performed in the organizations.
In this sense it is worthwhile mentioning that the guidelines for documentation in drug organizations are currently being revised. While many of the so-called low threshold drug organizations are in principle against any form of documentation, HIOB is now becoming involved in this process. This has been on its own initiative.
The representatives of the organizations present agreed that external evaluation is necessary, in spite of being cost-intensive. The main question of evaluation should always be if the aims of an organization have been achieved. There are, however, different ways of evaluation, i.e. of answering this question. Which way of evaluation would be the most useful for the different organizations was a question which remained unanswered.
At this Second National GFA-Workshop in Austria there was not much debate about the issue "approaches to power", although it came up a lot at the previous international meeting. This might have been due to time-constraints, as well as to the fact that it has not been possible to invite anyone from the Ministry of Health to this meeting. Although representatives from the Ministry showed interest, other obligations made it impossible for them to come. It was, however, promised to see if somebody from the political decision-making level will be able to participate at the Final International GFA-Workshop in London (fall 1998). Perhaps the presence of a political decision-maker would have evoked more discussion. From this, one could perhaps confirm that access to power is limited.
2.6 Networking versus Autonomy
Zero Sum - Mutual Benefit
Formal Structures - Informal Structures
The experts agreed on the fact that, in general, networking did not restrict autonomy. However, for the case of the Aids-Hilfen certain things have to be taken into consideration:
First of all there is the particular history of the Aids-Hilfen, which goes back to a struggle of the dependent regional Aids-Hilfen against a - in their opinion and at that time - too powerful, centralized head-quarter in Vienna. After splitting up and even after many years of an independent regional Aids-Hilfen history, it is still difficult to lead a rational discussion about the pros and cons of an umbrella-organization.
There was no consensus among the experts about whether the Aids-Hilfen, as single autonomous organizations as they exist right now, are similar or different. They are similar when it comes to their tasks, e.g. in the field of prevention: they all produce information material, do prevention work in the field (individual or in groups), offer HIV-testing, etc. This raised the question of the overlap in tasks, which is crucial in the light of limited resources. However, some experts held the opinion that history still made it difficult for all to pull together on a particular point, e.g. to issue one uniform prevention campaign. Some of the experts emphasized the difference between the Aids-Hilfen and supported the opinion that prevention-campaigns, folders, leaflets, should be produced on a regional basis. It was also said that since the Aids-Hilfen were too different as organizations, a formal networking would yield no benefit. Much of this conflict has also been focused around the role of the Aids-Informationszentrale (AIZA): this organization is the clearinghouse of the Aids-Hilfen and has been a service-point for the Aids-Hilfen (video-archive, production as well as distribution of various other prevention-materials, etc.). Beside that function, the AIZA - according to the organizations' own understanding - also has an organizational profile of its own, aiming at representing the Aids-Hilfen vis-a-vis the Ministry of Health for example. But not all Aids-Hilfen feel represented by the AIZA, e.g. the Wiener Aids-Hilfe does not wish to be represented by the AIZA and always prefers to negotiate directly with the Ministry of Health. This permanent conflict certainly could not have been resolved at this GFA-workshop, it was even difficult to admit that something had been withheld on the issue. During large parts of the discussion it was felt that some barriers blocked an open discussion. In this sense it can be seen as a progress that conflicts were put on the table and that conflict-lines were delineated. Some practical problems resulting from this situation were also described: information has not been shared, and if so, sometimes in a selected way. Since transparency has been missing, it has been difficult for other organizations in the field to understand the situation.
Contrary to the conflicts on that level, it was stated that networking in relation to clients does indeed work well. Three forms of co-ordination and networking were identified: political co-ordination among the organizations (I), client-related co-ordination (II), and content-related types of co-ordination, e.g. in the area of prevention (III), where also an integrative approach has also been widely used.
This has been put in the following framework with three types of co-ordination:
(I) Semi-autonomy on the level of power (influence), with various political implications
(II) Operational co-ordination with various practical implications (in a competitive and a non-competitive form)
(III) Knowledge-based networking (in terms of e.g. prevention, networking of social-workers and other professional groups, specific training, etc.)
The group agreed that whereas the two latter forms of co-ordination work quite sufficiently, various problems still exist with respect to the first form unfortunately - as described above. There was no short-term solution to be found which was acceptable for the whole group.
2.7 Integration versus Specialization
Normalization, Target Groups, Exclusive Organizations
With respect to the topic "integration versus specialization", the group voted for a very specific look at different areas: whereas in the area of prevention a high degree of specialization is needed, it also needs integration in order to deliver prevention to all target-groups (to multiply efforts). It was agreed that Aids-Hilfen have achieved a high level of specialization, e.g. specific departments deal with prevention-issues. By the same token, other groups should benefit from this specialized knowledge through training-seminars, peer group education efforts, etc. Thus, integration and specialization are being combined in order to reap the greatest benefits.
The same goes for care. However, in the area of medical and social care, integration is much more difficult. Barriers are greater, for instance it is not yet possible to integrate primary care in the medical care of PWAs. Medical care is still only being delivered in a very technological, highly specialized form (see also section 2.2), which is not always necessary. This not only leads to reduced psychosocial care, but is also very cost-intensive. A possible way of resolving this problem would lie in the better co-ordination between highly specialised Aids-departments at public hospitals (in most cases, University hospitals) and the primary care physicians in the periphery. A stronger link between intra- and extramural care would be necessary, but at the moment this is still difficult to achieve.
This works somewhat better in the area of social care, although some problems are also apparent here. At the moment it heavily depends on the head nurses of specific regions (or neighbourhood) and whether they are willing to deal with Aids patients or not. It also seems to be a bureaucratic problem, because even if mobile nurses are willing to care for Aids patients, they are often not allowed to if the patient does not happen to live in the specific district. Political willingness on the highest decision-making level (in the case of the City of Vienna, the Department of Health) would be needed to overcome this problem.
In all these areas normalization should be the aim in the way described above. On the level of the single exclusive Aids-specific organization (e.g. the Wiener Aids-Hilfe), the demand for normalization means that one does not engage in these areas, but asks for the contribution of other inclusive organizations already active in that specific field. New organizations, e.g. "HIV-Mobil", support this way of thinking and act, trying to bridge the gaps and motivate other inclusive organizations to come into the Aids field.
2.8 Ethical Issues
Discrimination Laws, Needle Exchange Programmes, Compulsory Testing, the Age of Consent, etc.
Due to time-constraints these points could not be discussed at length. It was, however, again stated that issues such as HIV-screening, compulsory HIV-testing and the misuse of "informed consent", when it comes to HIV-testing in public hospitals, are still on the organizations' agenda as issues to be strongly opposed.
The same goes for the age of consent, which is still lower for heterosexual relations than for homosexual ones. The organizations also reported some minor successes in the combat against the unethical way of dealing with HIV tests, e.g. in the area of plasma-products. However, at the same time it was pointed out that the Aids organizations are unfortunately not supported by the public in this combat, thus rendering it extremely difficult to find a necessary lobby. Favouring HIV-testing only according to the certain quality-standards (such as those issued by WHO, regulating pre- and post-test counselling, for instance) means holding a minority's position. Recent developments with respect to medication (antiretroviral combination therapies) and its relative success, may change the outlook on the ethics of the way of HIV-testing however.
Summarizing the above discussion and its relevant results, some progress and changes have occurred in almost all areas between Phases I and III of this project. By the same token, these changes depict new questions which reflect the challenges Aids organizations will have to face in the near future.
Table: Progress and Change Achieved up to GFA-Phase III
| Dismantling the Welfare State (Fund Raising) | Additional money is needed in all fields of HIV-related work; private sponsoring in addition to public money is accepted |
|
| Increased Life Expectancy of PWAs (I) | Emphasis on psycho social care is needed |
|
| Increased Life Expectancy of PWAs (II) | Relative success of the 'new drugs' is accepted |
|
| Underrepresented Needs Groups (I): general | Needs of Clients are changing, new ways of care are needed |
|
| Underrepresented Needs Groups (II): drug users | Hepatitis C is recognized as a common problem |
|
| Underrepresented Needs Groups (III): socially disadvantaged groups, women | Self-help is accepted as a way to empower these groups |
|
| Evaluation versus Control | More evaluation is needed (are the organizational aims achieved?) |
|
| Networking and Inter-organizational relationships (I) | Informal networking functions well (e.g. client-related, knowledge-based, etc.) |
|
| Networking and Inter-organizational relationships (II) | Specific history of the Aids-Hilfen hinders formal networking |
|
| Integration versus Specialization | Differentiated perspective is needed: specialized knowledge has to be multiplied in order to achieve integration |
|
| Ethical Issues | Consensus on quality standards in HIV-testing |
|
4. Outlook
The above table depicts the most important results in terms of change and/or a reduction of dissonance which have occurred since Phase I of this project. As the method being used in this project, Group-Feedback Analysis, suggests constant loops of feedback to the participants, these results will partly serve as a starting point for the final international meeting in the autumn of 1998.
As a preparation for this Final GFA-Workshop, these results will not only be fed back to the participants of the Second National GFA-Meeting, but they will also be distributed to a wider group of experts. This will be done in a twofold way: first there is the possibility of using the Internet, thus making the results accessible to all those organizations in the field of HIV/Aids working with and using the Internet. The results will also be put on the web-site of the Aids-Hilfen and they, and their clients will be asked for their feedback and/or answers to the main questions (as summarized in the table above).
Secondly, the group agreed that some of the main results will be presented to the regional Aids-Hilfen at one of their regular meetings in order to assure that all the Aids-Hilfen, even those not using Internet, have a chance to make their additional input.
The revised results will then form the basis for the Austrian contribution and preparation of the final International Meeting. First steps are also being prepared to disseminate the results to a range of organizations in the Aids field as widely as possible since this project aims to disseminate the final results to the whole of the Aids community in each country.