Selected Research Papers in Social Change, Education, Labour Market, and Criminology Volume II

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Paper WP 2003–021. Rostock: Max Planck Institute for Demographic Research. http://www.demogr.mpg.de/papers/working/wp-2003-021.pdf. Oppong, C. (1983): Women’s roles, opportunity, cost and fertility, in: Bulatao, R.A./ Lee, R.D. (eds.), Determinants of fertility in developing countries: a summary of Knowledge Part A, National Academy Press: Washington, D.C., 439–474.

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Vishnevsky, A. (1996): Family, fertility, and demographic dynamics in Russia: analysis and forecast, in: DaVanzo, J. (ed.): Russia’s Demographic Crisis RAND Conference proceedings, RAND, Santa Monica, 1-34.

Zakharov, S. V./ Ivanova E. I. (1996): Fertility decline and recent changes in Russia: On the threshold of the second demographic transition. in: Da Vanzo, J./ Farnsworth G. (eds.): Russia’s Demographic Crisis. Santa Monica: RAND Conference Proceeding, 36–83.

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Appendix

Table A1: Review of the movement of the population in the Republic of Macedonia: 1931–2008

Years Crude birth rate General fertility Rate Crude marriages rate

1931 37.6 165.8 9.8 1948 40.7 175.5 11.9 1953 37.9 158.5 9.0 1961 29.9 126.1 8.4 1971 22.9 89.9 8.9 1981 20.6 80.4 13.6 1990 16.6 - 7.4 1991 17.1 68.0 7.4 1992 16.2 - 7.5 1993 15.4 - 7.3 1994 17.2 67.0 8.1 1995 16.5 - 8.0 1996 15.8 - 7.1 1997 14.7 - 7.0 1998 14.6 - 7.0 1999 13.5 - 7.0 2000 14.5 - 7.0 2001 13.3 - 6.5 2002 13.7 46.2 7.2 2003 13.3 - 7.1 2004 11.5 - 6.9 2005 11.0 42.7 7.1 2006 11.1 42.8 7.3

2007* 11.1 42.9 7.6 2008* 11.2 43.4 7.2

Source: From 1931–1999 Statistical Yearbook of the Republic of Macedonia, 1998. From 1999–2006 Statistical yearbook 2007. *Calculated by the researcher based on the vital registration record from the SSO, RM; (-) is not available

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Table 2: Age-Specific Fertility Rates: 1994–2008, Republic of Macedonia Years 15–19 20–24 25–29 30–34 35–39 40–44 45–49 TFR 1994 43.2 154.5 136.6 61.2 17.9 3.7 0.3 2.1

1995 41.6 144.1 131.0 57.5 17.0 3.5 0.2 2.0 1996 36.5 139.5 127.6 56.6 16.6 3.4 0.3 1.9 1997 33.9 124.3 116.8 53.4 16.1 3.2 0.3 1.7 1998 31.4 120.1 119.0 54.6 17.7 2.9 0.2 1.7 1999 28.7 111.2 111.4 51.9 16.1 2.7 0.3 1.6 2000 29.6 110.4 119.1 56.6 17.7 3.0 0.2 1.7 2001 24.9 99.4 109.7 55.6 16.8 2.7 0.2 1.5 2002 23.7 101.7 112.4 58.3 17.5 3.7 0.1 1.6 2003 23.4 95.4 111.4 57.4 17.5 3.0 0.2 1.5 2004 22.8 90.2 109.5 58.7 18.7 3.4 0.2 1.5 2005 21.7 82.5 105.1 60.5 18.7 3.4 0.1 1.46 2006 20.2 79.9 105.7 61.9 21.3 3.0 0.1 1.46 2008 19.8 77.7 105.3 66.2 21.8 3.7 0.1 1.47

Source: Republic of Macedonia State Statistical Office (2006) Statistical Review: Population and social statistics Demographic statistics by Region 1994–2004 2/4/6/04 526 p.49 Calculated from Census data and vital registration for each year.

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Alfred Grausgruber

Deinstitutionalisation of Psychiatric Long-Stay Patients in Upper Austria

A Successful Example or only Trans-Institutionalisation?

1 Introduction and research questions

“Mental illness” has been a field of intensive research and discussion in medicine, psychiatry as well as in sociology for many decades. Sociologists understand “mental illness” as “deviant behaviour” and have done much work and research in epidemiology, in explaining causes, in analysing stigmatisation, in describing the care of the mentally ill, and so on. Most known are studies about mental health care, especially about mental hospitals, for instance those of Belknap (Human Problems of Mental Hospitals, 1956), Goffman (Asylums, 1961), Foucault (Madness and Civilization, 1965), Wing/Brown (Institutionalism and Schizophrenia, 1970).

Belknap was one of the first sociologists who examined daily life within large mental hospitals. He mentioned the problem that mental hospitals have to “carry out two contradictory and essentially unrelated functions ... treating the mentally ill ... (and) serving as a more efficient poor farm, with more centralized organization” (1956: 204; cit. In: Dowdall, 1999: 522). Belknap also found that people living in such huge mental hospitals develop symptoms like apathy, lack of interest concerning things outside their personal area of life, resignation, special habits and so on.

Goffman’s analyses of institutions like mental hospitals, prisons and so on led him to the conclusion that all these institutions have some extraordinary important characteristics, and he termed them “total institutions”. A “...total institution ... (is a place) ...of residence and work where a large number of like-situated individuals, cut off from the wider society for an appreciable period of time, together lead an enclosed, formally administered round of life” (Goffman, 1961: xiii). Life in a total institution “undercut the mental stability”: inmates lose their identity – they get a spoiled identity, people are stigmatised, life leads to irreparable problems and impedes or avoids a reintegration into the community.

Wing, later to become one of the most important social psychiatrists, and Brown, a sociologist, analysed which special characteristics of large mental hospitals lead to which results (1970). They called the typical symptoms of long-stay psychiatric patients diagnosed as schizophrenic as “institutionalism”. Chronically mentally ill patients remain in large hospitals because of the lack of a stable social network, lose their interest in living outside, show a lack of interest and initiative, droop their

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shoulders, and show an inability to live independently outside the mental hospital. In their comparison of three different mental hospitals they found the most symptoms of institutionalism in those hospitals where patients experience the most social and institutional deprivations like no variability of daily life, poor manner of station administration and negative attitudes of the staff.

Concomitant in these years a development in mental health care began in the USA which had enormous effects on people suffering from mental illness: the decline of state mental hospitals or “deinstitutionalisation”. As David Mechanic (1990) suggested, this development resulted on the one hand from a release or transfer of the mentally ill and on the other hand from entrance barriers to new admissions. Twenty years later, critical appraisals came to the conclusion that despite – or due to – the various forms and pace there is no definitive consensus on a common definition of deinstitutionalisation, and some criticise this decline as an undesirable aberration. Bachrach (1997) for example pointed out that, in contradiction to early policy statements on deinstitutionalisation, only two of the three important separate processes of deinstitutionalisation had been realised: first patients had already been released, second new admissions had been avoided to a large extent, but the third process, the combining of special community-based programmes with psychiatric and social support services to meet the needs of the new de-hospitalised patients has often been disregarded. Some like Dowdall (1999) criticised this as “trans-institutionalisation”.

In Europe there have been a great variety of processes and forms of deinstitutionalisation, from a planned coordinated declining and closing of mental hospitals for instance in the United Kingdom with the TAPS project (Leff, 1997) and a contemporaneous development of community support services as far as to a simple redefinition of former long-stay patients as “guests”, as it is criticised as the dark side of the Italian Revolution in psychiatric care initiated by Franco Basaglia.

After a critical study of the winding-down of the huge Massachusetts State Hospital in the USA, in the UK in 1985 the closure of two large mental hospitals, “Friern” and “Claybury”, started. A special group, the Team for the Assessment of Psychiatric Services (TAPS), conducted broad research during the eleven-year closure period of the two mental hospitals and the creation of community-based services also for severely psychiatric long-term patients.

Especially this TAPS project underpinned the underlying presumption for this policy: a planned and supported discharge of the severely mentally ill into outpatient care is possible, will provide an improvement in the patient’s quality of life, can reduce costs for the health care system and can be conducted with a satisfying level of care of the former long-stay patients.

In Austria, “deinstitutionalisation” began in the early 1970s and this applies especially to the province of Upper Austria. In Upper Austria, a province with a population of about 1.35 million, we can observe a continuous development of community-centred care for people suffering from mental illness in the last 40 years. At the same time, the number of long-stay beds for chronically mentally ill patients in the only central psychiatric hospital in the state capital Linz has been gradually reduced from an original number of nearly 1,500 beds in 1965 to about five beds in 2006. The last long-stay patients were discharged into out-patient facilities in April 2003. Whereas at the beginning of the 1970s there was only one

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huge mental hospital and a few practicing psychiatrists, nowadays a wide range of services support people with mental illnesses in the areas of habitation, occupation, leisure and of course psycho-social problems (Grausgruber et al., 2006: 16f).

Table 1: Psychiatric care in Upper Austria 1965 – 2000 Kind of residence 1965 1975 1985 1995 2000

Psychiatric mental health long-term wards 126.0

(1483) 100.0

(1246) 57.0

(732) 28.5

(395) 2.5

(34)

Foster care 26.0

(306)

Community accommodation* 0.0

(0)

Total 152 (1789) 25.0

(311)

2.4

(30)

127 (1587) 30.4

(391)

15.8

(203)

103 (1326) 34.5

(444)

21.3

(295)

84.3 (1134) 27.0

(370)

38.0

(521)

67.5

(925)

Beds: per 100,000 people and absolute (in parentheses) * old people’s home, residential homes, (un)staffed group homes, independent living facilities

Table 1 presents a short insight into this development of the changing provision. It contains information about natural figures and bed rates per 100.000 inhabitants in four large areas: psychiatric wards, psychiatric units for acutely diseased patients, community residential care facilities ranging from sheltered homes for the elderly to independent living groups, and government-operated nursing homes. The data range is from 1965 to 2000. The figures make visible the decline of psychiatric wards and beds on the one hand and the distinct increase in community services and acute facilities on the other.

Apart from good experiences with former discharges, it was predominantly the discussion about the costs of the mental health policy which led to the decision to discharge also the last and very seriously chronically psychiatric long-stay patients from the mental hospital. As there are international studies concerning deinstitutionalisation and health-care costs but no comprehensive study in Austria, the department of social welfare of the federal government of Upper Austria – funding social and mental health care for the chronically mental ill – decided in spring 2001 to entrust the Institute of Sociology of the University of Linz to conduct an extensive evaluation study of the deinstitutionalisation.

It will be the task of this paper to report whether the deinstitutionalisation of these people – also long-stay patients and the severely mentally ill – has been a success insofar as the goals mentioned above could be achieved or if it has only been a “trans-institutionalisation”, with lower costs but also a low quality of life and unmet needs of the former long-stay patients.

The aims of the evaluation were threefold: to examine whether the direct costs of the new community-based care are lower or are at most the same as in the longterm wards of the mental hospital; whether the quality of life of the former longstay patients is satisfying; and if people’s needs are being met.

The criteria for the evaluation of whether deinstitutionalisation is a success or only trans-institutionalisation are as follows. First: costs of the new care have to be

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significantly less than or at least equal to the costs of hospital warding. Second: a good quality of life is existent if former long-stay patients express high satisfaction, commensurately rating single items concerning specific domains at least to 75% with 4 to 5 points on a 1–5-point scale, comparable with 5–7 points on a 1–7-point scale. Third: new living facilities and other psycho-social support services ensure exhaustive care in the community if no unmet needs exist.

To achieve these aims the following research design has been conceptualised. A representative sample of the former long-stay patients has to be drawn, a costeffectiveness analysis and a prospective study are required, and information has to be gathered from different sources, namely clients, staff and health insurance companies. The study has to be conducted by a multidisciplinary research team consisting of sociologists and psychiatrists.

2 Study design and methods

The study design was realised in an adequate manner. Data was surveyed in the second half of 2001. Patient interviews were conducted at the beginning of the study at the end of June and the beginning of July and at the end of the six-month follow-up.

First of all, extensive data on social background and psychopathology was collected. To identify costs, a complex and challenging design had to be realised. Following the recommendations of Knapp/Beecham (1990) and Salize/Rössler (1997), counting direct costs was accomplished in several steps. Service utilisation plays an important role here. Service utilisation was assessed using the German version of the Client Socio-demographic and Service Receipt Inventory (CSSRI), an adapted version of the CSRI by Beecham/Knapp (1992). Utilisation was recorded prospectively by the staff, caregivers and health institutions during the whole observation period from 1 July to 31 December 2001 for each contact. Despite some shortcomings, the “Berliner Lebensqualitätsprofil” (Berlin Quality of Life Profile; Priebe/Hofmann, 1993) – an adapted version of the Lancashire Quality of Life Profile (Oliver, 1991) and successfully applied in German studies – was used to assess the quality of life. This instrument is shorter, but contains the original objective and subjective items and covers all essential aspects and is therefore comparable with the English original.

The “Berliner Bedürfnis Inventar” (BeBI) (Berlin Needs Inventory; Priebe et al., 1993) was used to assess needs for treatment and care. The Berlin Needs Inventory gathers information from patients and caregivers in 16 fields of life, whether patients need help, if they receive support and by whom help is provided. Both the Berlin Quality of Life Profile and the Berlin Needs Inventory instruments show satisfying reliability and validity properties (Phelan et al., 1995; Priebe et al., 1993; Priebe/Hofmann, 1993; Oliver et al., 1996).

Additionally, data concerning socio-demographic characteristics and psychopathology were gathered. We used three well known and valid and reliable scales: Global Assessment of Functioning (GAF; APA, 1987) for all patients, the Positive and Negative Syndrome Scale (PANSS; Kay et al., 1987) for schizophrenia and

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the Association for Methodology and Documentation in Psychiatry scale (AMDP; 1981). For further details refer to Grausgruber et al. 2006 (49ff).

Table 2 summarises the instruments used in the study. T1 represents the time before deinstitutionalisation starts (June and beginning of July) and T2 the time after implementation (six months later). The observation period lasts from 1 July to 31 December 2001.

Table 2: Study design Instruments T1 Observation period T2

Service utilisation (CS(S)RI) adapted (Beecham/Knapp, 1992; Becker et.al.,1999)

Quality of life LQoLP adapted BelQ Berliner Lebensqualitätsprofil (Oliver et al., 1996; Priebe et al., 1997)

Needs CAN-EU adapted BEBI (Berliner Bedürfnisinventar) (Phelan et al., 1995; Hoffmann/Priebe, 1996) - Staff, users

Psychopathology (GAF, PANSS, AMDP)

Basic data - Socio-demographic data - illness-related information

T1 = June and beginning of July 2010 Observation period = 1 July to 31 December 2001 T2 = December 2001 yes

yes yes

Yes yes

Yes yes

Yes

The study was approved by the Ethics Committee and informed consent of the patients and if needed of their legal representatives was solicited. 3 Data collection and study sample

Patients were included in the study if they had been from the legal point of view long-stay in-patients for at least one year, if they had been discharged from the mental hospital between 10.10.95 and 31.12.2000 and if they lived at the time of the evaluation outside in new facilities in the community. At the end of 1995 nearly a quarter of the original 1500 long-stay patients were still in the hospital and therefore detailed data collection and recoding of addresses of residence of discharged long-stay patients were available. Between October 1995 and December 2000 a total of 409 patients had been discharged. Financial restrictions meant drawing a representative 40% sample in a two-step random procedure (from an alphabetic list). Of the remaining 163 patients, 28 (17.2%) had died, six

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patients could not be found because of unknown addresses, eight had been rehospitalised in the long-stay ward of the psychiatric hospital and five refused to participate in the study. The realised sample of 116 patients shows no significant differences regarding age, gender, diagnoses and type of residential facility after discharge (Grausgruber et al., 2006: 57). Exclusion criteria were in-patient status and being sentenced to jail. From all these 116 former long-stay psychiatric patients, at the beginning and at the end of the study quality of life, needs and health status was surveyed, and from 1 July to 31 December 2001 all contacts to mental health care units and every performed benefit was registered by staff.

The most important socio-demographic and health-related data are as follows: Nearly three-fifths are male with a mean age of about 58 years. The range is from 23 to 93 years. Patients were discharged from hospital on average after 42.9 months, with a range from 6 to 68 months. At the beginning of the study 40% lived in nursing homes, about 14% in old people’s home, 21% in residential homes, 19% in staffed group homes and 5% privately. Table 3: Socio-demographic and illness-related data