- Email: [email protected]
How Home Care Agencies in Germany View the AIDS Challenge: Results of an Exploratory Study
JANACSchaeffer Ewers, Vol. 11, No. / Home 4, July/August Care Agencies 2000in Germany
How Home Care Agencies in Germany View the AIDS Challenge: Results of an Exploratory Study Michael Ewers, Dipl Rel Päd, MPH Doris Schaeffer, PhD, Dipl Päd The purpose of this article is to examine the current state of home care services for people living with HIV/AIDS and other seriously ill patients in Germany. It is based on a research project promoted by the Federal Ministry for Labor that aimed to investigate the possibilities and problems related to home care of the critically ill and thus establish basic scientific principles that could be used to close a health care gap that has long been of concern. The article will initially offer a brief explanation of the causes underlying the current problems in the field of home care for seriously ill patients. The authors then present the implications for nursing qualification that will have to be addressed to develop a patient-oriented, priority-level home nursing care program for people with HIV/AIDS in Germany. Key words: home care, qualification, nursing, HIV/AIDS
When asked about his experience with AIDS patients, the director of a home care agency located in a north German county seat told us that the “AIDS wave” had not yet reached his region. “No experience had been gained with such patients and other topics were more pressing anyway.” Furthermore, “Health care with a pocket calculator” or the pressure to “always have to submit vouchers for everything so it can be charged for” dominates everyday concerns. Thus, the consequences of the market-driven reorganization of community nursing and the introduction of
long-term nursing care insurance in Germany have relegated health care problems for people with AIDS to the background. The director of another home care facility that had already gained experience with AIDS patients summarized his experience in drastic terms: They’re terribly hard to deal with in personal terms and as human beings. . . . The two we had were just incredibly difficult to handle. . . . One was utterly lonely, withdrawn, and very demanding. . . . The other already had two or three home care agencies behind him when he came to us. . . . Then, when he was finished with us, he went to a nursing home somewhere, and that’s where he died 2 weeks later. But he really did mess things up with everyone. The only people who still visited him, though with great reluctance, were staff from the AIDS-Hilfe[1]—that’s all. . . . A nice young man, in fact, but then he suddenly started playing everyone off against each other, and somehow everything was all wrong. Everyone was to blame for the fact that he had to die, and it was very difficult with him.
Michael Ewers, Dipl Rel Päd, MPH, is at the Institute of Nursing Science, University of Bielefeld. Doris Schaeffer, PhD, Dipl Päd, is at the Institute of Nursing Science, University of Bielefeld.
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 11, No. 4, July/August 2000, 65-72 Copyright © 2000 Association of Nurses in AIDS Care
66
JANAC Vol. 11, No. 4, July/August 2000
Answers like those above were routinely heard by the research team members who polled home care agencies in Germany about their experience with AIDS patients. Agency directors made it clear that the low rate of HIV/AIDS in the Federal Republic of Germany, in contrast to other countries (Hamouda, 1997), does not currently present home nursing care agencies with an urgent problem. However, this type of response can have an alternate interpretation, which is that Germany, two decades after the emergence of AIDS, has still not been successful in ensuring that these patients receive adequate home care services. As scientific investigations have shown a number of times, the actions required to respond to the needs of these HIV/AIDS patients have largely failed to materialize in Germany (Ewers & Schaeffer, 1999; Schaeffer, 1996; Schaeffer & Moers, 1995). People with AIDS continue to be met with evasion tactics, incompetence, and massive quality deficits in the home care sector. It should be noted that AIDS patients, who encounter stigmatization and marginalization, are not the only ones to have negative experiences on their way through Germany’s health care system. Other severely ill and dying patients encounter similar problems in receiving quality health care services. This is especially true in agencies providing traditional home care. In summary, these problems lead to a situation where, despite the political will, there has still been limited success in providing HIV/AIDS patients with appropriate health care services. Specifically, there are no services available that guarantee HIV/AIDS patients adequate home nursing care in the late phases of the disease or when they are dying. This article will begin by outlining how the administrators and staff of home care agencies in Germany perceive AIDS patients and what challenges these professionals confront when responding to these patients’ nursing needs. There will then be a brief explanation of the causes underlying the health care problems encountered by persons with HIV/AIDS. Finally, tasks in the field of qualification will be presented that will have to be undertaken to develop a patientoriented, priority-level outpatient care program in Germany. First, there will be several remarks about the empirical basis of this article.
The Empirical Basis The introduction of statutory long-term care insurance (SGB XI) in Germany was implemented in 1991 through a model federal program. The overall goal of this program was to improve care for those requiring nursing services and to expand the home care infrastructure. A part of this program consisted of a model project to promote nursing preparedness for severely ill and dying persons using AIDS patients as an example. This project was funded by the Federal Ministry of Labor and Social Affairs (Bonn) and implemented by the Deutsche AIDS-Hilfe e.V. (Berlin) from 1995 to 1997.2 The aim of the model project was to provide motivation for the development of priority-level home care for severely ill persons that was in keeping with their individual needs. The model project was evaluated by the Institute of Nursing Science at the University of Bielefeld (IPW), in close collaboration with the Social Science Research Center in Berlin (WZB). (For further information about the institute, please see their Web site: http://www.uni-bielefeld.de/IPW.) The first step in implementing the model program was the investigation of the current situation in home care. The senior staff of home nursing care service agencies (n = 20) were polled using theme-supported expert interviews. The aim of these interviews was to obtain information about the present situation in home care, the problems confronted in everyday care of the severely ill and dying patients, and the need for qualifying support. Staff members from standard home care agencies were the primary interviewees. However, interviews were also done with staff members working in specialized home care agencies, such as oncology or hospice (n = 4), and with experts from supporting organizations (n = 4). These individuals were included in the interviews to gain additional data that supplemented or provided a contrast to data obtained from staff working in standard home care agencies. After advance analysis of the literature, the data were evaluated in terms of content (Mayring, 1988), systematized, and put in the form of reports (Ewers & Schaeffer, 1999). A brief extract of the results obtained during the first step of the investigation is presented.
Ewers, Schaeffer / Home Care Agencies in Germany
Current Status of Home Care in Germany The way in which the staff of home care agencies in Germany view the challenge of AIDS is overlaid by the complex upheaval that this health care sector is experiencing. It is important to note that after its birth in the 1970s, home care in Germany was largely characterized by natural growth processes (i.e., marketdriven growth) (Damkowsky, Görres, & Luckey, 1988; Garms-Homolová & Schaeffer, 1992). In the past few years, however, home care has increasingly attracted the attention of politicians and health care professionals and has become the target of numerous reform efforts. These reform efforts reached their provisional peak with the statutory nursing insurance introduced in 1995 (SGB XI) and the regulatory policy interventions that it entailed (Asam & Altmann, 1995; Ewers, 1996, 1997; Rothgang, 1996). Without detailing here the effects of SGB XI and the specific social law forms that it has taken, it remains to be stated that since the introduction of this new benefits law, home care in Germany has been subjected to momentous financial, operative, and staff-related restructuring processes. Home care agencies are being admonished to (a) increasingly orient their health care and range of services to economic aspects to take into account the economic principle of maximum return applied within the scope of the Long-Term Care Insurance Act, (b) initiate structural processes of adjustment to the ever-more complex problems of community health care by developing and implementing umbrella and collaborative organization models, and (c) react to the lack of uniformity, the inconsistency, and poor qualifications on the part of their staff and thus to staff-related consequences of the unchecked expansion in this area by developing a tenable, needs-oriented personnel profile at every level of home care. That the economic, organizational, and personnel sectors of home care are dominated by turbulence can easily blind one to the fact that this health care sector is also being confronted for quite different reasons, with a long overdue, though difficult, adjustment and modernization process. It is, above all, the patients’ new panorama of illnesses, the structural transformations
67
of old age, and the accompanying changes in the quantitative and qualitative dimensions of nursing needs that are confronting home care in Germany. This is accompanied by shifts in care delivery needs caused by the health care structure—shifts that have attracted too little attention to date. There are not only efforts to minimize the importance of the inpatient sector by shortening patients’ stays but there are also many forms of treatment previously reserved for the inpatient sector being shifted to the patients’ homes (Krajic, Grießler, Grundböck, & Pelikan, 1998; Pelikan, Stacher, Grundböck, & Krajic, 1998). This situation has resulted in changes that are already having tangible effects on home care. There is an influx of patients into home nursing agencies that requires extensive, sophisticated, and complex nursing care. This includes patients with AIDS, carcinoma, multiple sclerosis, and cystic fibrosis, as well as follow-up care for patients after operations (cf. Krajic et al., 1998). Against this background of turbulence, the questions arise as to how regular home care facilities encounter severely ill patients in their everyday nursing operations and how home care agencies are responding to the specific care needed by this group of patients. This investigation was undertaken to answer these questions using patients with HIV/AIDS as the surrogate marker for all severely ill or dying patients.
AIDS Patients and Their Nursing Care Needs It must first be mentioned that interviews with home care agency clientele can be assigned to three different categories. These categories are based on age and reason for, type, and extent of the required nursing care. Despite all the transformational processes that have been implemented in home care to date, most patients who receive in-home care are still relatively easy care (e.g., ones receiving standard services). Consistent with results of earlier investigations (Brandt, GöpfertDivivier, & Schweikart, 1992; Garms-Homolová & Schaeffer, 1992), this clientele consists mainly of older patients. Their nursing care needs result less from specific clinical conditions than from functional impairment associated with advanced age. In addition,
68
JANAC Vol. 11, No. 4, July/August 2000
in home care, there are growing numbers of patients who we will call “threshold” patients. These patients are, for example, people with carcinoma and confused, demented, or brain-damaged patients. These patients have usually been receiving home care for an extended period, mainly due to other (age-related) disorders. At some point, these patients become conspicuous from the perspective of the nursing care service directors polled. For example, one director described this occurrence as “when they leave hotplates on, flood their homes with water, or spend the night out on the balcony.” Compared with the regular clientele found in home care, threshold patients represent the group of patients that requires the greatest levels of quantitative and qualitative nursing care. The need for care often increases insidiously because of degenerative or moderately progressive processes and is only noticed by home care nursing personnel relatively late—usually in connection with crises. From the perspective of the home care service directors interviewed, AIDS patients must be assigned exclusively to a third group, the so-called anomalous patients. This group of patients also includes other severely ill or dying patients and younger, single, drug-consuming, homeless, migrant, mentally conspicuous, suicidal, or aggressive patients requiring care. The common feature shared by anomalous patients is that their care places a number of demands on home care agencies. Staff members of standard home care agencies rarely feel up to the task of caring for these patients, resulting in these patients receiving care only in exceptional cases. These patients most often have to rely on either specialized home care services (Ewers, 1998a) or inpatient facilities. In the care of persons with AIDS, for example, home care agencies providing standard nursing care view the complex nursing needs as a great challenge. The large number of clinical conditions associated with AIDS and the frequent alternation between acute and remittent phases of the illness require the constant adaptation of care (Ewers, 1998a). Home care agencies find it hard to anticipate these changes in the patients’ nursing needs. It is difficult to adequately respond to nursing needs of AIDS patients due to the lack of knowledge among agency staff related to the disease trajectory of AIDS and the potential
consequences of specific interventions. In many cases, the appropriate interventions needed to respond to the needs of AIDS patients are not in the routine repertoire of Germany’s home care agencies (Schaeffer & Moers, 1994). Instead, nursing personnel react relatively helplessly to their patients’ growing and changing needs. This is especially true in patients who have complex social problems such as drug use or homelessness in addition to physical illness associated with HIV/AIDS (Ewers & Weicht, 1995). If home care agencies are not able to avert the admission of such patients, care is often provided in a crisis manner and shortly terminated through a potentially avoidable commitment of the patient to a hospital. The care of AIDS patients is proving to be problematic for the home care agencies also because of the greater time and expense required by these patients. Often, AIDS patients require a large investment of staff time for interaction and communication. Although the care of the typical home care patient has led to complaints by nurses about the nurse-patient relationship becoming too intimate or the nurse being used as family surrogates or servants, the situation with anomalous patients is exactly the opposite. The nursing relationship is often of brief duration and is overshadowed by the necessity to constantly assess and respond to the changing needs of the patient over the course of the illness. Thus, the nursing staff often lacks the necessary time to develop a personal relationship with the patient. The situation is further aggravated by the fact that AIDS patients often come from lifestyles and social backgrounds (e.g., homosexuality, drug use) that are unfamiliar to or rejected by most home care personnel. In these cases, differences in values and communication problems impede the provision of services and can result in conflict between the patient and the nursing staff. The fact that Germany’s present range of home care services is based on a service-to-supplement-the-family approach can also provide difficult challenges in the home care of persons with AIDS. When patients live alone, have specific problems such as lack of orientation, or pose a danger to themselves, the ability of home care agencies to provide appropriate services is soon exhausted. To compensate for these holes in nursing care, home care services have to actively seek informal helpers. This is especially true for AIDS
Ewers, Schaeffer / Home Care Agencies in Germany
patients who are often alienated from their families or whose family relationships are only conditionally capable of bearing up under pressure. For home care agencies, the intermeshing of professional and informal help (e.g., with honorary staff) into a care team requires a considerable amount of extra organizational time and expense. It also necessitates an agency staff that is willing to provide care-related education and instructions to the honorary staff. Many staff members are reluctant to take this responsibility due to the narrow structural boundaries of their jobs and their lack of qualifications to perform this task. Furthermore, home care agencies feel overtaxed when they encounter patients requiring a high degree of technically intensive nursing (e.g., the duty to provide infusions or constant respiration). Citing longstanding professional and liability-related concerns, only few of the home care agencies participating in our survey were prepared to care for patients with such nursing needs (Ewers, 1999). Due to outside demands for agencies to adjust the services they offer based on the needs of severely ill patients, home care agencies feel that they are being subjected to moral pressure and often react with resistance. When home care agency directors are questioned about the lack of care that they offer AIDS patients, they usually fall back on issues related to the competencies of their nursing staff and the customary division of labor between medicine and nursing as the causes. As a result, home care agencies often failed to pay attention not only to relevant conditions of home care (e.g., the distance of the physician from the patient’s home) but also to the quite real opportunities to expand the radius of nursing activities and influence in the community. In this way, home care for anomalous patients often leads to a repeat of familiar doctor-nurse games (Stein, 1967). This makes it difficult for nurses to act as patient advocates and establish functional modes of collaboration with physicians (Ewers, 1998b; Garms-Homolová & Schaeffer, 1998) that facilitate the patients’ receiving of home care. It should be noted that because of their complex needs, persons with HIV/AIDS, as well as other severely ill patients, present multiple financial, organizational, and capacity-related problems from the point of view of home care agencies. Extensive nonroutine care has to be ensured, duty schedules reorganized or
69
made more flexible, and existing staff redeployed or additional helpers recruited to meet patients’ needs. For agencies providing AIDS care, a state of change becomes the normal and usually short duration of home care for the severely ill, often entailing substantial increases in organizational time and expense. This situation is aggravated by the fact that the financing of outpatient nursing care for the severely ill in Germany can often only be ensured through complex negotiations of individual cases. From the service agency’s point of view, this process is filled with numerous financial uncertainties, causing them to shy away from the risks that go hand in hand with the care of AIDS patients. With this understanding, it is hardly surprising that home care agencies providing standard nursing care are reluctant to respond to the complex profile of needs associated with AIDS patients. They frequently react to patients by focusing attention on the patients’ personality or deviant lifestyle. In reality, the challenges posed by the care of persons with AIDS are often not related to the specific care needs associated with the course of the disease but rather the complex set of structural and system factors that surround the care of these patients. This situation may explain why AIDS patients frequently encounter evasion tactics aimed at avoiding providing them with home care. For many home nursing care agencies, the only available strategy to cope with the challenges associated with the care needs of AIDS patients and other severely ill patients is to pass them on to other care agencies (Schaeffer, 1989). By doing so, it is possible for home care organizations to avoid addressing system deficits and staff competency shortcomings—at least for the short term.
Germany’s Nursing Care System The lack of an adequate response to the need for home care for persons with AIDS and for those with other severe illnesses has not resulted from structural and financial problems within the delivery system alone. Problems within the nursing profession have contributed to deficits in the delivery of nursing services. There is little doubt that qualification deficits exist and that conceptual weaknesses within
70
JANAC Vol. 11, No. 4, July/August 2000
Germany’s nursing care system have affected the provision of care to persons with HIV/AIDS. This fact is hardly surprising, bearing in mind that in Germany, the rise of the AIDS epidemic in the 1980s was met by a profoundly disconcerted professional group (nurses) that had no up-to-date identity or professional view of itself (Schaeffer, 1998). Many factors in the last few years of the 1980s provided an impetus for change in the nursing profession in Germany. Among these factors were nurses’ obtaining the right to set up practices anywhere in the European Union and the standardization of professional qualifications (Treaty of Maastricht). Furthermore, because of the German Treaty of Unification, basic and advanced nursing training underwent numerous attempts at reform with increased nursing qualification standards established. The fact that nursing is moving toward becoming an academic field of study, with nursing programs being established at institutions of higher education, is liberating Germany from its dubious reputation as an “underdeveloped nursing country” (Schröck, 1989, p. 107). However, these reforms have just begun, and their effects on nursing and health care practices are at best limited. This situation is especially true in the field of home care and in the care of persons with HIV/AIDS. Adequate education in the home health care of the severely ill is currently not provided in either basic nursing training or new courses of study established in academic institutions. This lack of attention in nursing education to severely ill and dying patients continues to lead to, as in the case of AIDS patients, “overloads, quality problems, and attempts to insulate oneself” (Schaeffer, 1996, p. 149). In Anglo-American and northern European countries (e.g., Great Britain and the Scandinavian countries), where nursing has developed a greater level of professionalism (as compared to Germany), nurses have approached AIDS with a sense of challenge. The care of patients who are severely ill or dying has been declared a central task of nursing care. The fact that AIDS is an incurable disease that requires intense nursing care has given professional nursing a central place in the care of persons with HIV/AIDS. Supporting the quality of life in AIDS patients has been identified as a core nursing task, and a number of nurses have developed and published care strategies
for these patients (e.g., Faugier & Hicken, 1996; Haak Flaskerud & Ungvarski, 1990; Tobin, Chow, Bowmer, & Bally, 1993). In undertaking the care of AIDS patients, nurses in North America and northern Europe have, for the most part, successfully confronted issues related to providing care for patients representing marginalized groups or those with different lifestyles. In many instances, because of AIDS activism, members of the communities affected by HIV/AIDS (e.g., the gay community) are being actively included in the planning and shaping of care. Although recent advancements in AIDS treatments such as HAART (highly active anti-retroviral therapy) are changing the focus of care for persons with HIV/AIDS, these new therapies have put new care issues (e.g., adherence and rehabilitation) on the nursing care agenda. Nurses in countries with a high level of nursing professionalism will continue to take a leading role in the care of people with HIV/AIDS.
Qualification Requirements A comparable surge toward professionalism (as compared to North America and northern Europe) in the care for people with HIV/AIDS has so far largely failed to materialize in Germany. The majority of persons involved in the care of these patients in the community care sector are confronted in their everyday work with tasks for which they were inadequately prepared. There is undoubtedly a need for change. Although advanced nursing educational programs focusing on the home care of the severely ill have been developed in the United States, Canada, Australia, Great Britain, and several Scandinavian countries, 3 there have been no such initiatives in Germany. However, the model project (identified above) that has been implemented in Germany to promote nursing preparedness for the severely ill and dying, following the example of AIDS patients, represents, despite its conceptual limitations, a step in the right direction. If the goal of priority-level home care and qualified nursing care in the home setting is to be realized in Germany, this initiative will have to be followed by additional programs. In view of the basic prescientific qualifications of nurses in Germany, efforts to increase the quality of
Ewers, Schaeffer / Home Care Agencies in Germany
care provided in specialty fields such as AIDS care will have to address deficits in basic competencies among German nurses. Future educational programs need to address the growing requirement for nurses to be better prepared in the following areas: shaping patient interactions and communications, dealing with the specifics of a chronic disease, integrating and instructing family members and volunteers who can provide care, and coordinating resources in a complex health system. It is important that the measures implemented to improve the qualifications of nurses take a comprehensive approach to prepare nurses who can adequately respond to patients’ complex profile of needs. Regardless of the widespread attitude on the part of home care agencies (further documented in our investigation) that would restrict nursing preparation to the psychosocial aspects of care, nurses need to be prepared to address somatic, biomedical, and nursing requirements of severely ill patients. Otherwise, there is the danger that efforts to educate nurses will fail to bring about a basic change in nursing practice. In view of the changes taking place in home care nursing, those responsible for preparing nurses have little choice but to acknowledge the upheaval occurring in this field and take steps to respond to the problems. Given the obstacles to be expected in the implementation of change, it is important that nurses be prepared to embrace innovation and act as agents of change in raising the level of nursing qualifications. Only in this way is it possible that nursing will not suddenly find itself in the role of a victim of externally initiated changes but instead shape the process of change in the direction of patient-oriented home care.
71
change the way they work. Improving the status of nursing and increasing the academic qualifications of nurses will be necessary initial steps in this process. The innovations so urgently needed in the home care sector will not be achieved without a major investment in the preparation and qualifications of nurses.
Notes 1. AIDS-Hilfen are the most common nonprofit and nongovernmental AIDS service organizations in Germany. They were originally developed by Gay Men—comparable to Gay Men’s Health Crisis or the Terence Higgins Trust—but now serve a huge population of people infected or affected by HIV/AIDS. In AIDS-Hilfen, both health care professionals and volunteers can be found. 2. The Deutsche AIDS-Hilfe e.V. is the umbrella organization of more than 130 regional AIDS-Hilfen all over Germany. It is located in Berlin. 3. In the United States, the Association of Nurses in AIDS Care (ANAC) has established certification as AIDS registered nurse (ACRN), has published an AIDS-specific educational curriculum, has an annual conference and training programs, and publishes a bimonthly journal (Journal of the Association of Nurses in AIDS Care), ensuring the necessary distribution and discussion of nursing scientific results. Although there is a comparable association in Europe—European Association of Nurses in Aids Care (EANAC)—Germany’s nursing sector has so far tended to stand out because of its poor presence in the organization.
References Conclusion Home care for AIDS patients and other severely ill and dying people is still characterized in Germany by many deficits and, contrary to health care–related goals, can in no way be considered as a given. The reasons for this situation are related to both financial and structural issues in the care delivery system and problems with knowledge and skills among nurses. If home care for severely ill and dying patients (e.g., AIDS patients) in Germany is to be brought in line with international standards, home nursing agencies will have to initiate a process of turnover learning and substantially
Asam, W. H., & Altmann, U. (1995). Geld oder pflege. Zur ökonomie und reorganisation der pflegeabsicherung [Money or care. About economy and reoganization of nursing care]. Freiburg i.B., Germany: Lambertus. Brandt, F., Göpfert-Divivier, W., & Schweikart, R. (1992). Ambulante dienste für pflegebedürftige: Studie im auftrag des bundesministeriums für familie und senioren [Home care for people in need of nursing care: Study on behalf of the Federal Ministry of Family and Seniors]. Schriftenreihe des BMFuS, 6.1. Stuttgart, Germany: Kohlhammer. Damkowsky, W., Görres, S., & Luckey, K. (1988). Sozialstationen. Konzepte und praxis eines modells ambulanter versorgung [Home care agencies. Concepts and practice of a home care model]. Frankfurt M., Germany: Mabuse.
72
JANAC Vol. 11, No. 4, July/August 2000
Ewers, M. (1996). Pflegeversicherung—lösung oder teil des problems? Das SGB XI und die pflege von menschen mit AIDS [Statutory long-term care insurance—solution or part of the problem? The SGB XI and nursing care for people living with AIDS]. In H. Jäger (Ed.), AIDS. Management der erkrankung (pp. 407-413). Landsberg/Lech, Germany: Ecomed. E w e r s , M . ( 1 9 97) . Kons e que nz e n de r 3. s t u f e d e r gesundheitsreform für die ambulante versorgung von schwerkranken und sterbenden patienten. Befürchtungen und erartungen [Consequences out of the third phase of health care reform for home care for severely ill and dying patients. Fears and expectations]. In H. Jäger (Ed.), AIDS—neue perspektiven. Therapeutische erwartungen. Die realität 1997 (pp. 450-455). Landsberg/Lech, Germany: Ecomed. Ewers, M. (1998a). Pflegequalität. Arbeitsbuch für die ambulante pflege bei AIDS [Quality of nursing care. Manual for AIDS home care]. Hannover, Germany: Schlütersche. Ewers, M. (1998b). Schwerstkranke pflegen—kooperation gestalten [To do nursing care for the severely ill—to form collaboration]. Pflegemanagement, 5, 33-38. Ewers, M. (1999, November). The advent of high-tech home care in Germany. Paper presented at the Canadian Home Care Conference, Toronto, Ontario, Canada. Ewers, M., & Schaeffer, D. (1999). Herausforderungen für die ambulante pflege schwerstkranker. Eine situationsanalyse nach einführung der pflegeversicherung [Challenges for home care for the severely ill. Analysis of the situation after the implementation of the statutory long-term care insurance] (P99-107. Institut für Pflegewissenschaft an der Universität Bielefeld). Bielefeld, Germany: IPW. Ewers, M., & Weicht, W. (1995). Menschen mit AIDS pflegen: i.v. DrogengebraucherInnen [Nursing care for people living with AIDS: IV drug users]. Frankfurt M., Germany: Mabuse. Faugier, J., & Hicken, I. (Eds.). (1996). AIDS and HIV. The nursing response. London: Chapman & Hall. Garms-Homolová, V., & Schaeffer, D. (1992). Versorgung alter menschen. Sozialstationen zwischen wachsendem bedarf und restriktionen [Care for older people. Nursing care agencies between increasing needs and restrictions]. Freiburg i.Br., Germnay: Lambertus. Garms-Homolová, V., & Schaeffer, D. (Eds.). (1998). Medizin und pflege. Kooperation in der ambulanten versorgung [AIDS and HIV. The nursing response]. Wiesbaden, Germany: Ullstein Mosby. Haak Flaskerud, J., & Ungvarski, P. J. (1990). HIV/AIDS—A guide to nursing care (2nd ed.). Philadelphia: Saunders. Hamouda, O. (1997). Gegenwärtiger stand und entwicklung der globalen HIV/AIDS-epidemie [Recent status and development of the global HIV/AIDS epidemic]. In H. Jäger (Eds.), AIDS—neue perspektiven. Therapeutische erwartungen. Die realtiät 1997 (pp. 66-68). Landsberg/Lech, Germany: Ecomed. Krajic, K., Grießler, E., Grundböck, A., & Pelikan, J. M. (1998). Ambulante versorgung schwer- und schwerstkranker. Eine explorative meta-analyse zehn internationaler modelle [Home care for the severly ill. A explorative meta-analysis of 10 international models]. (P98-104. Veröffentlichungsreihe des
Instituts für Pflegewissenschaft an der Universität Bielefeld). Bielefeld, Germany: IPW. Mayring, P. (1988). Qualitative inhaltsanalyse. Grundlagen und techniken [Qualitative content analysis. Basics and techniques] (6th ed.). Weinheim, Germany: Beltz. Pelikan, J. M., Stacher, A., Grundböck, A., & Krajic, K. (Eds.). (1998). Virtuelles krankenhaus zu hause—entwicklung und qualität ganzheitlicher hauskrankenpflege [Virtual hospital at home—evolution and quality of comprehensive home nursing care]. Wien, Germany: Facultas. Rothgang, H. (1996). Vom bedarfs- zum budgetprinzip. Die einführung der pflegeversicherung und ihre rückwirkung auf die gesetzliche krankenversicherung [From need-led to budget-led approach. The implementation of the statutory long-term care insurance and its effects on the statutory health care insurance]. In C. Clausen (Ed.), Gesellschaften im umbruch (pp. 930-946). Frankfurt M., Germany: Campus. Schaeffer, D. (1989). Sturkturelle versorgungsprobleme und professionelle interventionsmuster bei chronisch-kranken alten patienten [Structural problems and patterns of professional intervention in nursing care of older patients with chronic disease]. Zeitschrift für Sozialreform, 35(11/12), 737-749. Schaeffer, D. (1996). Innovationsprozesse in der ambulanten pflege—AIDS als pilotprojekt [Innovations in home care— AIDS as a pilot project]. Pflege, 9(2), 140-149. Schaeffer, D. (1998). Pflegewissenschaft in Deutschland. Zum entwicklungsstand eienr neuen wissenschaftlichen disziplin [Nursing science in Germany. The state of development of a new scientific discipline] (P98-101, Veröffentlichungsreihe des Instituts für Pflegewissenschaft an der Universität Bielefeld). Bielefeld, Germany: IPW. Schaeffer, D., & Moers, M. (1994). Präventive potentiale kurativer institutionen—prävention als aufgabe ambulanter pflege [Preventive potentials of curative institutions—prevention as part of home care]. In R. Rosenbrock, H. Kühn, & B. Köhler (Eds.), Präventionspolitik: Gesellschaftliche strategien der gesundheitssicherung (pp. 385-407). Berlin, Germany: Edition Sigma. Schaeffer, D., & Moers, M. (1995). Ambulante pflege von HIV- und AIDS-patienten [Home care for people with HIV/AIDS]. (P95-201, Veröffentlichungsreihe der Arbeitsgruppe Public Health, Wissenschaftszentrum Berlin für Sozialforschung). Berlin, Germany: WZB. Schröck, R. (1989). Herausforderung und probleme der pflegeforschung. Pflegeforschung für professionelle pflegepraxis [Challenges and problems for nursing science. Nursing research for professional nursing practice] (Zwölftes arbeitsgruppentreffen und internationale pflegeforschungskonferenz). Frankfurt M., Germany: DBfK, 107-18. Stein, L. I. (1967). The doctor-nurse game. Archives of General Psychiatry, 16, 699-703. Tobin, M. A., Chow, F. J., Bowmer, M. I., & Bally, G. A. (Eds.). (1993). A comprehensive guide for the care of persons with HIV disease. Module 1: Adults. Mississauga, Ontario, Canada: The College of Family Physicians of Canada.
How Home Care Agencies in Germany View the AIDS Challenge: Results of an Exploratory Study Michael Ewers, Dipl Rel Päd, MPH Doris Schaeffer, PhD, Dipl Päd The purpose of this article is to examine the current state of home care services for people living with HIV/AIDS and other seriously ill patients in Germany. It is based on a research project promoted by the Federal Ministry for Labor that aimed to investigate the possibilities and problems related to home care of the critically ill and thus establish basic scientific principles that could be used to close a health care gap that has long been of concern. The article will initially offer a brief explanation of the causes underlying the current problems in the field of home care for seriously ill patients. The authors then present the implications for nursing qualification that will have to be addressed to develop a patient-oriented, priority-level home nursing care program for people with HIV/AIDS in Germany. Key words: home care, qualification, nursing, HIV/AIDS
When asked about his experience with AIDS patients, the director of a home care agency located in a north German county seat told us that the “AIDS wave” had not yet reached his region. “No experience had been gained with such patients and other topics were more pressing anyway.” Furthermore, “Health care with a pocket calculator” or the pressure to “always have to submit vouchers for everything so it can be charged for” dominates everyday concerns. Thus, the consequences of the market-driven reorganization of community nursing and the introduction of
long-term nursing care insurance in Germany have relegated health care problems for people with AIDS to the background. The director of another home care facility that had already gained experience with AIDS patients summarized his experience in drastic terms: They’re terribly hard to deal with in personal terms and as human beings. . . . The two we had were just incredibly difficult to handle. . . . One was utterly lonely, withdrawn, and very demanding. . . . The other already had two or three home care agencies behind him when he came to us. . . . Then, when he was finished with us, he went to a nursing home somewhere, and that’s where he died 2 weeks later. But he really did mess things up with everyone. The only people who still visited him, though with great reluctance, were staff from the AIDS-Hilfe[1]—that’s all. . . . A nice young man, in fact, but then he suddenly started playing everyone off against each other, and somehow everything was all wrong. Everyone was to blame for the fact that he had to die, and it was very difficult with him.
Michael Ewers, Dipl Rel Päd, MPH, is at the Institute of Nursing Science, University of Bielefeld. Doris Schaeffer, PhD, Dipl Päd, is at the Institute of Nursing Science, University of Bielefeld.
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 11, No. 4, July/August 2000, 65-72 Copyright © 2000 Association of Nurses in AIDS Care
66
JANAC Vol. 11, No. 4, July/August 2000
Answers like those above were routinely heard by the research team members who polled home care agencies in Germany about their experience with AIDS patients. Agency directors made it clear that the low rate of HIV/AIDS in the Federal Republic of Germany, in contrast to other countries (Hamouda, 1997), does not currently present home nursing care agencies with an urgent problem. However, this type of response can have an alternate interpretation, which is that Germany, two decades after the emergence of AIDS, has still not been successful in ensuring that these patients receive adequate home care services. As scientific investigations have shown a number of times, the actions required to respond to the needs of these HIV/AIDS patients have largely failed to materialize in Germany (Ewers & Schaeffer, 1999; Schaeffer, 1996; Schaeffer & Moers, 1995). People with AIDS continue to be met with evasion tactics, incompetence, and massive quality deficits in the home care sector. It should be noted that AIDS patients, who encounter stigmatization and marginalization, are not the only ones to have negative experiences on their way through Germany’s health care system. Other severely ill and dying patients encounter similar problems in receiving quality health care services. This is especially true in agencies providing traditional home care. In summary, these problems lead to a situation where, despite the political will, there has still been limited success in providing HIV/AIDS patients with appropriate health care services. Specifically, there are no services available that guarantee HIV/AIDS patients adequate home nursing care in the late phases of the disease or when they are dying. This article will begin by outlining how the administrators and staff of home care agencies in Germany perceive AIDS patients and what challenges these professionals confront when responding to these patients’ nursing needs. There will then be a brief explanation of the causes underlying the health care problems encountered by persons with HIV/AIDS. Finally, tasks in the field of qualification will be presented that will have to be undertaken to develop a patientoriented, priority-level outpatient care program in Germany. First, there will be several remarks about the empirical basis of this article.
The Empirical Basis The introduction of statutory long-term care insurance (SGB XI) in Germany was implemented in 1991 through a model federal program. The overall goal of this program was to improve care for those requiring nursing services and to expand the home care infrastructure. A part of this program consisted of a model project to promote nursing preparedness for severely ill and dying persons using AIDS patients as an example. This project was funded by the Federal Ministry of Labor and Social Affairs (Bonn) and implemented by the Deutsche AIDS-Hilfe e.V. (Berlin) from 1995 to 1997.2 The aim of the model project was to provide motivation for the development of priority-level home care for severely ill persons that was in keeping with their individual needs. The model project was evaluated by the Institute of Nursing Science at the University of Bielefeld (IPW), in close collaboration with the Social Science Research Center in Berlin (WZB). (For further information about the institute, please see their Web site: http://www.uni-bielefeld.de/IPW.) The first step in implementing the model program was the investigation of the current situation in home care. The senior staff of home nursing care service agencies (n = 20) were polled using theme-supported expert interviews. The aim of these interviews was to obtain information about the present situation in home care, the problems confronted in everyday care of the severely ill and dying patients, and the need for qualifying support. Staff members from standard home care agencies were the primary interviewees. However, interviews were also done with staff members working in specialized home care agencies, such as oncology or hospice (n = 4), and with experts from supporting organizations (n = 4). These individuals were included in the interviews to gain additional data that supplemented or provided a contrast to data obtained from staff working in standard home care agencies. After advance analysis of the literature, the data were evaluated in terms of content (Mayring, 1988), systematized, and put in the form of reports (Ewers & Schaeffer, 1999). A brief extract of the results obtained during the first step of the investigation is presented.
Ewers, Schaeffer / Home Care Agencies in Germany
Current Status of Home Care in Germany The way in which the staff of home care agencies in Germany view the challenge of AIDS is overlaid by the complex upheaval that this health care sector is experiencing. It is important to note that after its birth in the 1970s, home care in Germany was largely characterized by natural growth processes (i.e., marketdriven growth) (Damkowsky, Görres, & Luckey, 1988; Garms-Homolová & Schaeffer, 1992). In the past few years, however, home care has increasingly attracted the attention of politicians and health care professionals and has become the target of numerous reform efforts. These reform efforts reached their provisional peak with the statutory nursing insurance introduced in 1995 (SGB XI) and the regulatory policy interventions that it entailed (Asam & Altmann, 1995; Ewers, 1996, 1997; Rothgang, 1996). Without detailing here the effects of SGB XI and the specific social law forms that it has taken, it remains to be stated that since the introduction of this new benefits law, home care in Germany has been subjected to momentous financial, operative, and staff-related restructuring processes. Home care agencies are being admonished to (a) increasingly orient their health care and range of services to economic aspects to take into account the economic principle of maximum return applied within the scope of the Long-Term Care Insurance Act, (b) initiate structural processes of adjustment to the ever-more complex problems of community health care by developing and implementing umbrella and collaborative organization models, and (c) react to the lack of uniformity, the inconsistency, and poor qualifications on the part of their staff and thus to staff-related consequences of the unchecked expansion in this area by developing a tenable, needs-oriented personnel profile at every level of home care. That the economic, organizational, and personnel sectors of home care are dominated by turbulence can easily blind one to the fact that this health care sector is also being confronted for quite different reasons, with a long overdue, though difficult, adjustment and modernization process. It is, above all, the patients’ new panorama of illnesses, the structural transformations
67
of old age, and the accompanying changes in the quantitative and qualitative dimensions of nursing needs that are confronting home care in Germany. This is accompanied by shifts in care delivery needs caused by the health care structure—shifts that have attracted too little attention to date. There are not only efforts to minimize the importance of the inpatient sector by shortening patients’ stays but there are also many forms of treatment previously reserved for the inpatient sector being shifted to the patients’ homes (Krajic, Grießler, Grundböck, & Pelikan, 1998; Pelikan, Stacher, Grundböck, & Krajic, 1998). This situation has resulted in changes that are already having tangible effects on home care. There is an influx of patients into home nursing agencies that requires extensive, sophisticated, and complex nursing care. This includes patients with AIDS, carcinoma, multiple sclerosis, and cystic fibrosis, as well as follow-up care for patients after operations (cf. Krajic et al., 1998). Against this background of turbulence, the questions arise as to how regular home care facilities encounter severely ill patients in their everyday nursing operations and how home care agencies are responding to the specific care needed by this group of patients. This investigation was undertaken to answer these questions using patients with HIV/AIDS as the surrogate marker for all severely ill or dying patients.
AIDS Patients and Their Nursing Care Needs It must first be mentioned that interviews with home care agency clientele can be assigned to three different categories. These categories are based on age and reason for, type, and extent of the required nursing care. Despite all the transformational processes that have been implemented in home care to date, most patients who receive in-home care are still relatively easy care (e.g., ones receiving standard services). Consistent with results of earlier investigations (Brandt, GöpfertDivivier, & Schweikart, 1992; Garms-Homolová & Schaeffer, 1992), this clientele consists mainly of older patients. Their nursing care needs result less from specific clinical conditions than from functional impairment associated with advanced age. In addition,
68
JANAC Vol. 11, No. 4, July/August 2000
in home care, there are growing numbers of patients who we will call “threshold” patients. These patients are, for example, people with carcinoma and confused, demented, or brain-damaged patients. These patients have usually been receiving home care for an extended period, mainly due to other (age-related) disorders. At some point, these patients become conspicuous from the perspective of the nursing care service directors polled. For example, one director described this occurrence as “when they leave hotplates on, flood their homes with water, or spend the night out on the balcony.” Compared with the regular clientele found in home care, threshold patients represent the group of patients that requires the greatest levels of quantitative and qualitative nursing care. The need for care often increases insidiously because of degenerative or moderately progressive processes and is only noticed by home care nursing personnel relatively late—usually in connection with crises. From the perspective of the home care service directors interviewed, AIDS patients must be assigned exclusively to a third group, the so-called anomalous patients. This group of patients also includes other severely ill or dying patients and younger, single, drug-consuming, homeless, migrant, mentally conspicuous, suicidal, or aggressive patients requiring care. The common feature shared by anomalous patients is that their care places a number of demands on home care agencies. Staff members of standard home care agencies rarely feel up to the task of caring for these patients, resulting in these patients receiving care only in exceptional cases. These patients most often have to rely on either specialized home care services (Ewers, 1998a) or inpatient facilities. In the care of persons with AIDS, for example, home care agencies providing standard nursing care view the complex nursing needs as a great challenge. The large number of clinical conditions associated with AIDS and the frequent alternation between acute and remittent phases of the illness require the constant adaptation of care (Ewers, 1998a). Home care agencies find it hard to anticipate these changes in the patients’ nursing needs. It is difficult to adequately respond to nursing needs of AIDS patients due to the lack of knowledge among agency staff related to the disease trajectory of AIDS and the potential
consequences of specific interventions. In many cases, the appropriate interventions needed to respond to the needs of AIDS patients are not in the routine repertoire of Germany’s home care agencies (Schaeffer & Moers, 1994). Instead, nursing personnel react relatively helplessly to their patients’ growing and changing needs. This is especially true in patients who have complex social problems such as drug use or homelessness in addition to physical illness associated with HIV/AIDS (Ewers & Weicht, 1995). If home care agencies are not able to avert the admission of such patients, care is often provided in a crisis manner and shortly terminated through a potentially avoidable commitment of the patient to a hospital. The care of AIDS patients is proving to be problematic for the home care agencies also because of the greater time and expense required by these patients. Often, AIDS patients require a large investment of staff time for interaction and communication. Although the care of the typical home care patient has led to complaints by nurses about the nurse-patient relationship becoming too intimate or the nurse being used as family surrogates or servants, the situation with anomalous patients is exactly the opposite. The nursing relationship is often of brief duration and is overshadowed by the necessity to constantly assess and respond to the changing needs of the patient over the course of the illness. Thus, the nursing staff often lacks the necessary time to develop a personal relationship with the patient. The situation is further aggravated by the fact that AIDS patients often come from lifestyles and social backgrounds (e.g., homosexuality, drug use) that are unfamiliar to or rejected by most home care personnel. In these cases, differences in values and communication problems impede the provision of services and can result in conflict between the patient and the nursing staff. The fact that Germany’s present range of home care services is based on a service-to-supplement-the-family approach can also provide difficult challenges in the home care of persons with AIDS. When patients live alone, have specific problems such as lack of orientation, or pose a danger to themselves, the ability of home care agencies to provide appropriate services is soon exhausted. To compensate for these holes in nursing care, home care services have to actively seek informal helpers. This is especially true for AIDS
Ewers, Schaeffer / Home Care Agencies in Germany
patients who are often alienated from their families or whose family relationships are only conditionally capable of bearing up under pressure. For home care agencies, the intermeshing of professional and informal help (e.g., with honorary staff) into a care team requires a considerable amount of extra organizational time and expense. It also necessitates an agency staff that is willing to provide care-related education and instructions to the honorary staff. Many staff members are reluctant to take this responsibility due to the narrow structural boundaries of their jobs and their lack of qualifications to perform this task. Furthermore, home care agencies feel overtaxed when they encounter patients requiring a high degree of technically intensive nursing (e.g., the duty to provide infusions or constant respiration). Citing longstanding professional and liability-related concerns, only few of the home care agencies participating in our survey were prepared to care for patients with such nursing needs (Ewers, 1999). Due to outside demands for agencies to adjust the services they offer based on the needs of severely ill patients, home care agencies feel that they are being subjected to moral pressure and often react with resistance. When home care agency directors are questioned about the lack of care that they offer AIDS patients, they usually fall back on issues related to the competencies of their nursing staff and the customary division of labor between medicine and nursing as the causes. As a result, home care agencies often failed to pay attention not only to relevant conditions of home care (e.g., the distance of the physician from the patient’s home) but also to the quite real opportunities to expand the radius of nursing activities and influence in the community. In this way, home care for anomalous patients often leads to a repeat of familiar doctor-nurse games (Stein, 1967). This makes it difficult for nurses to act as patient advocates and establish functional modes of collaboration with physicians (Ewers, 1998b; Garms-Homolová & Schaeffer, 1998) that facilitate the patients’ receiving of home care. It should be noted that because of their complex needs, persons with HIV/AIDS, as well as other severely ill patients, present multiple financial, organizational, and capacity-related problems from the point of view of home care agencies. Extensive nonroutine care has to be ensured, duty schedules reorganized or
69
made more flexible, and existing staff redeployed or additional helpers recruited to meet patients’ needs. For agencies providing AIDS care, a state of change becomes the normal and usually short duration of home care for the severely ill, often entailing substantial increases in organizational time and expense. This situation is aggravated by the fact that the financing of outpatient nursing care for the severely ill in Germany can often only be ensured through complex negotiations of individual cases. From the service agency’s point of view, this process is filled with numerous financial uncertainties, causing them to shy away from the risks that go hand in hand with the care of AIDS patients. With this understanding, it is hardly surprising that home care agencies providing standard nursing care are reluctant to respond to the complex profile of needs associated with AIDS patients. They frequently react to patients by focusing attention on the patients’ personality or deviant lifestyle. In reality, the challenges posed by the care of persons with AIDS are often not related to the specific care needs associated with the course of the disease but rather the complex set of structural and system factors that surround the care of these patients. This situation may explain why AIDS patients frequently encounter evasion tactics aimed at avoiding providing them with home care. For many home nursing care agencies, the only available strategy to cope with the challenges associated with the care needs of AIDS patients and other severely ill patients is to pass them on to other care agencies (Schaeffer, 1989). By doing so, it is possible for home care organizations to avoid addressing system deficits and staff competency shortcomings—at least for the short term.
Germany’s Nursing Care System The lack of an adequate response to the need for home care for persons with AIDS and for those with other severe illnesses has not resulted from structural and financial problems within the delivery system alone. Problems within the nursing profession have contributed to deficits in the delivery of nursing services. There is little doubt that qualification deficits exist and that conceptual weaknesses within
70
JANAC Vol. 11, No. 4, July/August 2000
Germany’s nursing care system have affected the provision of care to persons with HIV/AIDS. This fact is hardly surprising, bearing in mind that in Germany, the rise of the AIDS epidemic in the 1980s was met by a profoundly disconcerted professional group (nurses) that had no up-to-date identity or professional view of itself (Schaeffer, 1998). Many factors in the last few years of the 1980s provided an impetus for change in the nursing profession in Germany. Among these factors were nurses’ obtaining the right to set up practices anywhere in the European Union and the standardization of professional qualifications (Treaty of Maastricht). Furthermore, because of the German Treaty of Unification, basic and advanced nursing training underwent numerous attempts at reform with increased nursing qualification standards established. The fact that nursing is moving toward becoming an academic field of study, with nursing programs being established at institutions of higher education, is liberating Germany from its dubious reputation as an “underdeveloped nursing country” (Schröck, 1989, p. 107). However, these reforms have just begun, and their effects on nursing and health care practices are at best limited. This situation is especially true in the field of home care and in the care of persons with HIV/AIDS. Adequate education in the home health care of the severely ill is currently not provided in either basic nursing training or new courses of study established in academic institutions. This lack of attention in nursing education to severely ill and dying patients continues to lead to, as in the case of AIDS patients, “overloads, quality problems, and attempts to insulate oneself” (Schaeffer, 1996, p. 149). In Anglo-American and northern European countries (e.g., Great Britain and the Scandinavian countries), where nursing has developed a greater level of professionalism (as compared to Germany), nurses have approached AIDS with a sense of challenge. The care of patients who are severely ill or dying has been declared a central task of nursing care. The fact that AIDS is an incurable disease that requires intense nursing care has given professional nursing a central place in the care of persons with HIV/AIDS. Supporting the quality of life in AIDS patients has been identified as a core nursing task, and a number of nurses have developed and published care strategies
for these patients (e.g., Faugier & Hicken, 1996; Haak Flaskerud & Ungvarski, 1990; Tobin, Chow, Bowmer, & Bally, 1993). In undertaking the care of AIDS patients, nurses in North America and northern Europe have, for the most part, successfully confronted issues related to providing care for patients representing marginalized groups or those with different lifestyles. In many instances, because of AIDS activism, members of the communities affected by HIV/AIDS (e.g., the gay community) are being actively included in the planning and shaping of care. Although recent advancements in AIDS treatments such as HAART (highly active anti-retroviral therapy) are changing the focus of care for persons with HIV/AIDS, these new therapies have put new care issues (e.g., adherence and rehabilitation) on the nursing care agenda. Nurses in countries with a high level of nursing professionalism will continue to take a leading role in the care of people with HIV/AIDS.
Qualification Requirements A comparable surge toward professionalism (as compared to North America and northern Europe) in the care for people with HIV/AIDS has so far largely failed to materialize in Germany. The majority of persons involved in the care of these patients in the community care sector are confronted in their everyday work with tasks for which they were inadequately prepared. There is undoubtedly a need for change. Although advanced nursing educational programs focusing on the home care of the severely ill have been developed in the United States, Canada, Australia, Great Britain, and several Scandinavian countries, 3 there have been no such initiatives in Germany. However, the model project (identified above) that has been implemented in Germany to promote nursing preparedness for the severely ill and dying, following the example of AIDS patients, represents, despite its conceptual limitations, a step in the right direction. If the goal of priority-level home care and qualified nursing care in the home setting is to be realized in Germany, this initiative will have to be followed by additional programs. In view of the basic prescientific qualifications of nurses in Germany, efforts to increase the quality of
Ewers, Schaeffer / Home Care Agencies in Germany
care provided in specialty fields such as AIDS care will have to address deficits in basic competencies among German nurses. Future educational programs need to address the growing requirement for nurses to be better prepared in the following areas: shaping patient interactions and communications, dealing with the specifics of a chronic disease, integrating and instructing family members and volunteers who can provide care, and coordinating resources in a complex health system. It is important that the measures implemented to improve the qualifications of nurses take a comprehensive approach to prepare nurses who can adequately respond to patients’ complex profile of needs. Regardless of the widespread attitude on the part of home care agencies (further documented in our investigation) that would restrict nursing preparation to the psychosocial aspects of care, nurses need to be prepared to address somatic, biomedical, and nursing requirements of severely ill patients. Otherwise, there is the danger that efforts to educate nurses will fail to bring about a basic change in nursing practice. In view of the changes taking place in home care nursing, those responsible for preparing nurses have little choice but to acknowledge the upheaval occurring in this field and take steps to respond to the problems. Given the obstacles to be expected in the implementation of change, it is important that nurses be prepared to embrace innovation and act as agents of change in raising the level of nursing qualifications. Only in this way is it possible that nursing will not suddenly find itself in the role of a victim of externally initiated changes but instead shape the process of change in the direction of patient-oriented home care.
71
change the way they work. Improving the status of nursing and increasing the academic qualifications of nurses will be necessary initial steps in this process. The innovations so urgently needed in the home care sector will not be achieved without a major investment in the preparation and qualifications of nurses.
Notes 1. AIDS-Hilfen are the most common nonprofit and nongovernmental AIDS service organizations in Germany. They were originally developed by Gay Men—comparable to Gay Men’s Health Crisis or the Terence Higgins Trust—but now serve a huge population of people infected or affected by HIV/AIDS. In AIDS-Hilfen, both health care professionals and volunteers can be found. 2. The Deutsche AIDS-Hilfe e.V. is the umbrella organization of more than 130 regional AIDS-Hilfen all over Germany. It is located in Berlin. 3. In the United States, the Association of Nurses in AIDS Care (ANAC) has established certification as AIDS registered nurse (ACRN), has published an AIDS-specific educational curriculum, has an annual conference and training programs, and publishes a bimonthly journal (Journal of the Association of Nurses in AIDS Care), ensuring the necessary distribution and discussion of nursing scientific results. Although there is a comparable association in Europe—European Association of Nurses in Aids Care (EANAC)—Germany’s nursing sector has so far tended to stand out because of its poor presence in the organization.
References Conclusion Home care for AIDS patients and other severely ill and dying people is still characterized in Germany by many deficits and, contrary to health care–related goals, can in no way be considered as a given. The reasons for this situation are related to both financial and structural issues in the care delivery system and problems with knowledge and skills among nurses. If home care for severely ill and dying patients (e.g., AIDS patients) in Germany is to be brought in line with international standards, home nursing agencies will have to initiate a process of turnover learning and substantially
Asam, W. H., & Altmann, U. (1995). Geld oder pflege. Zur ökonomie und reorganisation der pflegeabsicherung [Money or care. About economy and reoganization of nursing care]. Freiburg i.B., Germany: Lambertus. Brandt, F., Göpfert-Divivier, W., & Schweikart, R. (1992). Ambulante dienste für pflegebedürftige: Studie im auftrag des bundesministeriums für familie und senioren [Home care for people in need of nursing care: Study on behalf of the Federal Ministry of Family and Seniors]. Schriftenreihe des BMFuS, 6.1. Stuttgart, Germany: Kohlhammer. Damkowsky, W., Görres, S., & Luckey, K. (1988). Sozialstationen. Konzepte und praxis eines modells ambulanter versorgung [Home care agencies. Concepts and practice of a home care model]. Frankfurt M., Germany: Mabuse.
72
JANAC Vol. 11, No. 4, July/August 2000
Ewers, M. (1996). Pflegeversicherung—lösung oder teil des problems? Das SGB XI und die pflege von menschen mit AIDS [Statutory long-term care insurance—solution or part of the problem? The SGB XI and nursing care for people living with AIDS]. In H. Jäger (Ed.), AIDS. Management der erkrankung (pp. 407-413). Landsberg/Lech, Germany: Ecomed. E w e r s , M . ( 1 9 97) . Kons e que nz e n de r 3. s t u f e d e r gesundheitsreform für die ambulante versorgung von schwerkranken und sterbenden patienten. Befürchtungen und erartungen [Consequences out of the third phase of health care reform for home care for severely ill and dying patients. Fears and expectations]. In H. Jäger (Ed.), AIDS—neue perspektiven. Therapeutische erwartungen. Die realität 1997 (pp. 450-455). Landsberg/Lech, Germany: Ecomed. Ewers, M. (1998a). Pflegequalität. Arbeitsbuch für die ambulante pflege bei AIDS [Quality of nursing care. Manual for AIDS home care]. Hannover, Germany: Schlütersche. Ewers, M. (1998b). Schwerstkranke pflegen—kooperation gestalten [To do nursing care for the severely ill—to form collaboration]. Pflegemanagement, 5, 33-38. Ewers, M. (1999, November). The advent of high-tech home care in Germany. Paper presented at the Canadian Home Care Conference, Toronto, Ontario, Canada. Ewers, M., & Schaeffer, D. (1999). Herausforderungen für die ambulante pflege schwerstkranker. Eine situationsanalyse nach einführung der pflegeversicherung [Challenges for home care for the severely ill. Analysis of the situation after the implementation of the statutory long-term care insurance] (P99-107. Institut für Pflegewissenschaft an der Universität Bielefeld). Bielefeld, Germany: IPW. Ewers, M., & Weicht, W. (1995). Menschen mit AIDS pflegen: i.v. DrogengebraucherInnen [Nursing care for people living with AIDS: IV drug users]. Frankfurt M., Germany: Mabuse. Faugier, J., & Hicken, I. (Eds.). (1996). AIDS and HIV. The nursing response. London: Chapman & Hall. Garms-Homolová, V., & Schaeffer, D. (1992). Versorgung alter menschen. Sozialstationen zwischen wachsendem bedarf und restriktionen [Care for older people. Nursing care agencies between increasing needs and restrictions]. Freiburg i.Br., Germnay: Lambertus. Garms-Homolová, V., & Schaeffer, D. (Eds.). (1998). Medizin und pflege. Kooperation in der ambulanten versorgung [AIDS and HIV. The nursing response]. Wiesbaden, Germany: Ullstein Mosby. Haak Flaskerud, J., & Ungvarski, P. J. (1990). HIV/AIDS—A guide to nursing care (2nd ed.). Philadelphia: Saunders. Hamouda, O. (1997). Gegenwärtiger stand und entwicklung der globalen HIV/AIDS-epidemie [Recent status and development of the global HIV/AIDS epidemic]. In H. Jäger (Eds.), AIDS—neue perspektiven. Therapeutische erwartungen. Die realtiät 1997 (pp. 66-68). Landsberg/Lech, Germany: Ecomed. Krajic, K., Grießler, E., Grundböck, A., & Pelikan, J. M. (1998). Ambulante versorgung schwer- und schwerstkranker. Eine explorative meta-analyse zehn internationaler modelle [Home care for the severly ill. A explorative meta-analysis of 10 international models]. (P98-104. Veröffentlichungsreihe des
Instituts für Pflegewissenschaft an der Universität Bielefeld). Bielefeld, Germany: IPW. Mayring, P. (1988). Qualitative inhaltsanalyse. Grundlagen und techniken [Qualitative content analysis. Basics and techniques] (6th ed.). Weinheim, Germany: Beltz. Pelikan, J. M., Stacher, A., Grundböck, A., & Krajic, K. (Eds.). (1998). Virtuelles krankenhaus zu hause—entwicklung und qualität ganzheitlicher hauskrankenpflege [Virtual hospital at home—evolution and quality of comprehensive home nursing care]. Wien, Germany: Facultas. Rothgang, H. (1996). Vom bedarfs- zum budgetprinzip. Die einführung der pflegeversicherung und ihre rückwirkung auf die gesetzliche krankenversicherung [From need-led to budget-led approach. The implementation of the statutory long-term care insurance and its effects on the statutory health care insurance]. In C. Clausen (Ed.), Gesellschaften im umbruch (pp. 930-946). Frankfurt M., Germany: Campus. Schaeffer, D. (1989). Sturkturelle versorgungsprobleme und professionelle interventionsmuster bei chronisch-kranken alten patienten [Structural problems and patterns of professional intervention in nursing care of older patients with chronic disease]. Zeitschrift für Sozialreform, 35(11/12), 737-749. Schaeffer, D. (1996). Innovationsprozesse in der ambulanten pflege—AIDS als pilotprojekt [Innovations in home care— AIDS as a pilot project]. Pflege, 9(2), 140-149. Schaeffer, D. (1998). Pflegewissenschaft in Deutschland. Zum entwicklungsstand eienr neuen wissenschaftlichen disziplin [Nursing science in Germany. The state of development of a new scientific discipline] (P98-101, Veröffentlichungsreihe des Instituts für Pflegewissenschaft an der Universität Bielefeld). Bielefeld, Germany: IPW. Schaeffer, D., & Moers, M. (1994). Präventive potentiale kurativer institutionen—prävention als aufgabe ambulanter pflege [Preventive potentials of curative institutions—prevention as part of home care]. In R. Rosenbrock, H. Kühn, & B. Köhler (Eds.), Präventionspolitik: Gesellschaftliche strategien der gesundheitssicherung (pp. 385-407). Berlin, Germany: Edition Sigma. Schaeffer, D., & Moers, M. (1995). Ambulante pflege von HIV- und AIDS-patienten [Home care for people with HIV/AIDS]. (P95-201, Veröffentlichungsreihe der Arbeitsgruppe Public Health, Wissenschaftszentrum Berlin für Sozialforschung). Berlin, Germany: WZB. Schröck, R. (1989). Herausforderung und probleme der pflegeforschung. Pflegeforschung für professionelle pflegepraxis [Challenges and problems for nursing science. Nursing research for professional nursing practice] (Zwölftes arbeitsgruppentreffen und internationale pflegeforschungskonferenz). Frankfurt M., Germany: DBfK, 107-18. Stein, L. I. (1967). The doctor-nurse game. Archives of General Psychiatry, 16, 699-703. Tobin, M. A., Chow, F. J., Bowmer, M. I., & Bally, G. A. (Eds.). (1993). A comprehensive guide for the care of persons with HIV disease. Module 1: Adults. Mississauga, Ontario, Canada: The College of Family Physicians of Canada.