• Introduction: HIV/Aids as a challenge for health and welfare
• The research design used in the "Managing Aids"-study
  • Step 1: an overview of all the organizations
  • Step 2: a detailed study of national samples
  • Databases
  • Project organization
• Research Questions Answered by the "Managing Aids"-project
  • Organizational responsiveness - how many organizations are involved?
  • Policies related to HIV/Aids and the types of organizations involved
  • The importance of health and social policies related to HIV/Aids
  • The types of organizations involved in HIV/Aids-related work
  • Organizational characteristics leading to a committment in the field of HIV/Aids
  • Lessons learned from HIV/Aids

4.1. Introduction: HIV/Aids as a challenge for health and welfare

Since the early eighties we have been confronted with the social and medical phenomenon of HIV/Aids and with its personal and social consequences. Not only because of the stigma related to it Aids has created a profound challenge for the existing health and welfare system, for every individual human being, and society as a whole

The impact of Aids cannot be measured by epidemiology alone, although it is worrisome to note that in 1997 still every day an estimated 8.500 new HIV-infections occur worldwide. It has been estimated that 23 million people currently live with an HIV-infection, with 90% of those infected living in the developing world.

The crucial question therefore is not only, what programmes really work effectively in order to prevent a further spread of HIV/Aids, but also who should put them in place, and how should this be done to produce the best outcome?

The WHO-collaborative study "Managing Aids" has aimed at answering these questions through social science research in eight European countries by identifying the policies and strategies that prevent further HIV-transmission and reduce the personal and social impact of the Aids-epidemic.

In spite of promising recent developments in terms of the medical treatment of HIV-infections, the most effective weapon in combating HIV/AIDS still is avoiding the risks of transmission. Thus, the emphasis lies on prevention and human behaviour rather than on cure and treatment. This change of paradigms, which seems to be of increasing importance also for other chronic diseases, is being reflected in an ever increasing body of research carried out related to individual behavioural changes. However, it has become clear, that even for individuals with the widest possible range of information and knowledge about the HIV/Aids and its routes of transmission, it is still extremely difficult to bring about a consistent behavioural change in individuals.

The "Managing Aids"-project, however, did not focus on the common scientific approaches, be they medical, legal or on behavioural ones: The basic underlying theoretical assumption has been that the organizational response to HIV/Aids can be seen as the mediation of behavioural change. Once people get together, organize themselves, provide information and services needed - corresponding with their social norms and group specificities, it is much more likely that they will adopt safer sex practices or avoid unsafe drug use. Although this fact has been widely recognised, no specific research project so far has focused on the role of organizations with respect to HIV/Aids. Therefore, lying at the core of this project has been the mapping and studying of organizations providing any HIV/Aids-related activity (see the specific areas below).

The research design consisted of two steps:

Step 1: The first step comprises the thoroughly researched overview of all organizations in a country being active with respect to HIV/Aids in one of the six following areas:

• Prevention, information and education
• Medical, social and psycho social care
• Research
• Policy co-ordination and monitoring
• Interest representation and self-help
• Funding

  For gathering this information, a standardised inventory sheet has been developed: the AIDSINST directory sheet, which gives the basic information on the organization. It also serves as a screening instrument for organizations, whether they are sufficiently active in the area of HIV/Aids to be included in the data-set or not. These organizations can be public, private or non-profit organizations, when it comes to their organizational structure they can deal either exclusively with HIV/Aids ("exclusive" organizations) or inclusively, meaning that they have managed to integrate HIV/Aids-related services into their original profile of activities ("inclusive" organizations). Examples for "exclusive" organizations are self-help groups for People with Aids (PWAs), buddy- and other Aids-service organizations; for "inclusives" drug-service organizations or organizations for homosexual persons that provide HIV/Aids-related activities amongst other activities.

  Step 2: The second step has comprised a detailed study of national samples in each country, studying the organizational characteristics in a representative sample (up to 50 selected organizations per country) using a standardised 120-items questionnaire, which has been developed for this purpose (MANAGAIDS-questionnaire). The MANAGAIDS data-set serves to analyse the organizational characteristics, from their development to their activities and output, covering all important areas, such as conflicts, allocation of resources, or co-operation and competition with other organizations. This data serves mainly to analyse organizational characteristics which either enhance or hinder the development of HIV/Aids-related activities.

  Finally, in combining both data-sets (AIDSINST and MANAGAIDS) a policy-relevant analysis can be provided on the specific role of non-profit organizations as well as on the non-profit-sector, both with respect to HIV/Aids and its social impact.

  Databases

  Both databases, AIDSINST (data on all organizations in a given country) and MANAGAIDS, (in-depth data on a selected sample of organizations in a given country) exist as machine-readable files. The information in AIDSINST is generally available to the public and for some countries already published in the form of a national HIV/AIDS-directory.

  The information in MANAGAIDS is only accessible to the country teams of the "Managing Aids"-project and is treated with confidentiality. However, on the basis of the data, aggregate data analysis are carried out for academic purposes—as well as to advise policy-makers and organizations on the organizational development in the field of HIV/Aids.

  AIDSINST and MANAGAIDS data is available for all participating countries (i.e. Austria, Belgium, Hungary, Italy, The Netherlands, Portugal, Sweden and Switzerland).

  Project organization

  The research design of the "Managing Aids"-Project was developed in co-operation with WHO/GPA-Euro (i.e. World Health Organization, Global Programme on AIDS, Europe, October 1989). The project has also been approved by the "First Regional Workshop for AIDS Service Organizations in Europe on Collaboration and Networking Activities"—which, at the same time, was the founding meeting for EuroCASO (European Council of AIDS Service Organizations). Consequently, representatives from EuroCASO and WHO/GPA-Euro always took an active part at the annual project meetings of the Managing AIDS project. In addition, a representative of the project was invited to the EuroCASO Business Meeting every year to inform the community on its progress and outcomes.

  The "Managing Aids"-Project has been co-ordinated by the European Centre for Social Welfare Policy and Research in Vienna and is partially financed by WHO/GPA-Euro. All participating countries are represented by at least one senior and one junior researcher (a list of participating countries and the researchers is listed below). All data produced by any national research group in the project are accessible to the corresponding research groups from the international team. Each national research team has been responsible for organizing its own research funds to participate in the project. Regarding such financing, special attention is given to one major fact: when applying for funds, there should be no competition for public funds normally "earmarked" for non-profit or community organizations. Instead, applications were routinely made to funds explicitly set aside for research.

  
  

  4.3. Research Questions Answered by the "Managing Aids"-project

  Organizational responsiveness - how many organizations are involved?

  Health and social policies with respect to HIV/Aids play the most crucial roles, since they can either enhance or hinder the development of activities related to HIV/Aids. Examining different countries, we see that the organizational response varies widely: Why are there many services for homosexual men in one country and not in the other? What can explain the fact that drug users find HIV-related prevention in one city and not in another? Why are there few women-specific programmes in one region, whereas women are totally overlooked in another region, although epidemiological figures show that HIV-infections among women are increasing almost everywhere?

  The "Managing Aids"-project, however, covered more than 1,200 organizations and documented approximately 5000 activities related to HIV/Aids in eight European countries, constituting a data-base that provides answers to the most relevant research questions on the political and social conditions that enhance or hinder the development of such activities.

  The following table shows the distribution of the organizations active in the field of HIV/Aids in the countries participating in the Managing Aids-project. It also shows the relations between the number of organizations per country and the number of Aids cases, the number of inhabitants, and two measures for the organizational density in the respective countries.

  Table 4.1: The AIDS epidemic and the organizational response and organizational density in eight European countries

  Country	Number of Organizations	Number of Aids cases (cumulative)	Number of inhabitants (millions)	OD lc	OD lld
  Netherlands	711	2567	15.2	28	47
  Switzerland	306	3240	6.8	9	45
  Belgiuma	50	1114	5.8	4	9
  Austria	104	921	7.9	11	13
  Swedenb	63	797	8.6	n.a.	n.a.
  Italy	1135	20282	57.5	0.06	20
  Portugal	16	1352	9.8	1	2
  Hungary	7	115	10.4	6	1

  a only Flanders

  b The Swedish study did not, in contrast to the other country studies, include all organizations; all non-profit organizations and a sample of public organizations are included in this figure;
  n.a. = not applicable.

  c OD I (Organizational Density I): Organizations per 100 AIDS cases

  d OD II (Organizational Density I): Organizations per million inhabitants

  Sources:

  - "Managing AIDS" (European Centre/WHO Collaborative Study) (1993)

  - European Centre for the Epidemiological Monitoring of AIDS (1993)

  - Eurostat - Statistische Grundzahlen der Gemeinschaft 1993, Luxembourg

  Policies related to HIV/Aids and the types of organizations involved

  The "Managing AIDS" project is a quantitative comparative study, giving an overview of all organizations providing HIV/Aids related activities in all participating countries, thus resulting not only in single country studies but also in a cross-national comparison. Although the importance of organizations has been widely recognised, it is the only research project so far that has focused on the roles of organizations in dealing with HIV/Aids. The "Managing Aids"-project works on two levels: on the level of policy-analysis, and on the level of organizational analysis.

  The importance of health and social policies related to HIV/Aids

  On the policy-level of analysis the main research question was why countries differ so much in the quantitative offer of HIV/Aids-services and in the integration of or co-operation between the various activities and their relations to other organizations. Some of the most important, and to many people most surprising findings are that the quantitative offer of HIV/Aids-activities is clearly not related to the epidemiological case-load. More important for an effective organizational response is the structure of the social welfare and health system, as it existed even before HIV/Aids became known. It has to be concluded by the results of the Managing Aids project that this structure must be thought to be more important than the sudden introduction of specific initiatives by governments.

  The types of organizations involved in HIV/Aids-related work

  The "Managing Aids"- project has also looked in detail at the organizational level: thus, the overall organizational responsiveness can be described according to what types of organizations are involved in HIV/Aids-related work, and how the division of labour can be described among different types of organizations. The Managing Aids project not only has identified all public, private, and private-non profit organizations working in the field, but also looked at their organizational structure: "exclusive" organizations do only HIV/Aids-related work (such as Aids-service organizations, self-help groups, activists' organizations, etc.,), that provide very specific services which have developed as a particular and adequate response to the needs of the people affected with HIV/Aids (such as the buddy-systems, for example).

  But there are also a large number of "inclusive" organizations, organizations that have integrated HIV/Aids-related work into their original profile of tasks and services, such as drug-organizations, home-care services, psycho social support organizations, and sexual counselling centres, to name only some of them. The Managing Aids project has identified the organizational characteristics that can lead to the integration of such activities within "inclusive" organizations and thus can describe the conditions under which their development can be facilitated on an organizational level.

  Moreover, policy-implication drawn from these results lead to a better understanding of a finely-tuned division of labour: Some types of organizations are equipped better than others to provide certain activities, and some types of activities can only be provided by certain types of organizations (e.g. buddy-systems by definition can only be provided by community-based organizations, and within the structure of a clinic department it will be more difficult to provide needle-exchange services than within a low threshold drug-organization, where such facilities will be used also more frequently).

  Organizational characteristics leading to a committment in the field of HIV/Aids

  The organizational analysis on the level of the single organization working in the field of HIV/Aids has yielded not only an in-depth description of the organizations' output, but also looked at the organizations' development, decision-making process and conflicts within the organization and the organizational environment, voluntary work and professionalism, input and allocation of resources, co-operation and competition with other organizations working in the field, membership-structures and also at the gender-specificities of how HIV/Aids-related work is distributed among the professionals and volunteers committed to HIV/Aids.

  The organizational analysis has shown that organizations working in the field of HIV/Aids often encounter barriers to both their effectiveness and their efficiency in their daily work, but nevertheless fulfil service provision under circumstances that differ widely from one another. There are considerable pressures under which most of the organizations work, but conditions could be identified that lead to a fairly well and successful handling in spite of distressing work conditions.

  Lessons learned from HIV/Aids

  Many of the specific findings from the "Managing Aids"-project are most relevant to more general health and social policies, since they can be also applied to other fields. Thus, the approach of the "Managing Aids"-project and the policy conclusions drawn by it constitute an effort to help to solve some of the problems modern health care and welfare systems are confronted with. Although such findings cannot be easily transplanted as the one just solution, they might comprise a thinkable and feasible way to transformation and reorientation in health-care and health-promotion.

  Some of the lessons learned from the Aids epidemic are, for example: the shift from an emphasis on pure medical treatment to prevention, which can serve as a model of good practice for other diseases as well; the overall importance of prevention and health promotion on an individual as well as on the policy-level; the active participation of people directly or indirectly affected; or simply the fact that men can be good care providers, all of which the general health care system could benefit from.