Late “Early Intervention in Psychosis” - A Family School for Learning How to Live with Schizophrenia

Abstract

The paper describes a family school for learning how to live with schizophrenia, which was founded back in 1986 in Vienna/Austria and is still running today. It was established in cooperation between professionals and the Austrian self-help association HPE of relatives of persons with a mental disorder. It addresses the needs of ten families at a time, where a son or a daughter was diagnosed with schizophrenia and had already experienced one or several episodes of the illness. The course lasts one and a half years and is organised according to the model of a weekly boarding school, where ten daughters or sons, the “residents”, stay in the school overnight from Sunday evening to Friday and take part in a structured programme on cognitive, social and practical life skills. Ambulatory psychiatric treatment is taking place concurrently outside the school in local routine services. On weekends residents stay with their parents since the school is closed. Parents visit the school regularly to take part in joint activities with the residents. They also do night shifts in the school and attend a weekly parents’ group. In the regular encounters during everyday activities in the school, “learning by doing” occurs - parents get to know daughters and sons of other families and can learn to distinguish between disease related and personality-related behaviour. Residents can have similar learning experiences in relation to parents of other residents. The main aim of the school is that parents learn to provide “protected autonomy” for their diseased daughters or sons, in order to assist them for a life characterised by as much autonomy as possible after the end of the school.

Full Text

While in international guidelines family involvement in mental health services is regarded as an essential component in the treatment of schizophrenia, its routine implementation in the services themselves is underdeveloped 1. We are reporting here on a model of involving families as an external add-on activity to an ongoing treatment in local routine psychiatric services. It was founded jointly by professionals and a family self-help organisation in Vienna (Austria) back in 1986 and is still operating today. It addresses families with a son or daughter diagnosed with schizophrenia in late adolescence or early adulthood, where - after one or several clinical episodes - it has become clear that, contrary to initial hopes, the problem would not go away. It offers a one and a half year learning experience in a weekly boarding school setting for ten families at a time. We first discuss the motives for the establishment of the school (1), go on to explain the framework of the boarding school setting (2), and present the learning objectives (3), before describing the working of the school in detail (4). A discussion section, which also addresses limitations, concludes the article (5). Some illustrative data are included as supplementary materials, which can be accessed electronically.

1. Why a family school for learning how to live with schizophrenia? 

 

1.1 A diagnosis of schizophrenia leaves the family in despair - but hope exists 


When in late adolescence or early adulthood a daughter or a son is diagnosed with schizophrenia, the life of a family is fundamentally changed. Strange behaviour might have occurred already some time before a professional diagnosis is received 2. However, since the typical age of onset of schizophrenia coincides with the challenging transition period of a young person to adult life, parents might have wondered whether the strange behaviour was just a sign of a “delayed puberty crisis” or due to drug use. Since mental health literacy in the general population is poor and stigma and discrimination of persons with mental disorders, especially with schizophrenia, are widespread3, it is extremely demanding for parents and their daughter or son to accept the professional diagnosis of schizophrenia, which is often perceived as a virtual death sentence. Typically, a long and thorny grief process ensues, involving alternatively denial, depression and anger (akin to the processes proposed for the confrontation with one’s own death 4), before it becomes clear that there is a problem that will not go away. Parents often do not easily give their child away to psychiatry, but, eventually, perhaps only after several hospitalisations and with substantial delay, the diagnosis of schizophrenia and the necessity of treatment might be accepted. Psychiatrists themselves may play a role in the delay, since they might hesitate to communicate the diagnosis 3,5.

Contrary to the public stereotype3 6 7 - there is abundant evidence from long-term follow-up studies of young people diagnosed with schizophrenia, that there is a wide spectrum of outcomes, ranging from full recovery to a chronically deteriorating course, with many patterns in between. The respective results of early studies in Switzerland and the USA in the 1970ies and 1980ies 8 9 10 were confirmed by more recent research 11 12 13 14 15. The variations in course and outcome may actually be the consequences of the very imprecision of the diagnosis of schizophrenia, which has probably led to including heterogenous groups of patients in different studies – after all, the definition of schizophrenia is still debated today 16 17. In any case, looking at the findings of these studies, one can conclude that there is always hope that the course of the disorder in people diagnosed with schizophrenia early in life may not automatically be devastating. While complete recovery seems not to be that frequent, a somewhat milder course is obviously always possible. Knowing of this possibility counteracts the self-fulfilling prophecy mechanism of assuming a chronically deteriorating course, where it is supposed that nothing can be done. The aim of the family school described here is to motivate and assist parents who are willing to care for their daughter or son diagnosed with schizophrenia, to find the appropriate way of dealing with the difficult situation and provide an optimal environment which enhances the chances of positive developments.

1.2 Roles ascribed to parents with a daughter or son diagnosed with schizophrenia

 

Probably ever since psychiatry has existed, the parents of young people diagnosed with schizophrenia have had the role of informants for psychiatrists on what had happened before the patient was admitted to hospital (as is the case in pediatrics where a child cannot speak for him/herself), and were then often left alone and excluded from the care process. Soon also the idea that schizophrenia was inherited arose which gave parents an uneasy feeling and induced them to search their family trees for potential cases of schizophrenia. When in the 1960ies and 1970ies deinstitutionalization started, hospital beds were reduced, and patients diagnosed with schizophrenia were increasingly living near or with their families, specific attention arose for their parents with the two opposing concepts of, on the one hand, the parents being blamed as causing schizophrenia by their behaviour and, on the other hand, being seen as the victim of the disease18.

 

(insert box 1 around here)

Following earlier psychoanalytic theories about the “schizophrenogenic mother” 19 the 1960ies and 1970ies saw a rise of accusations that parents were causing schizophrenia in their children by their own “pathological” behaviour, both in widespread “antipsychiatric” publications 20 and in popular films (e.g. Ken Loach’s “Family Life” of 1971). Also, the concept of “treating” the whole family with psychoanalytic or systemic approaches was promoted, and in many parents feelings of guilt were induced or increased. The attitudes of professionals towards parents were often ambiguous or even rejecting, and it was not uncommon that the separation of parents and their sick children was advocated.

With the decrease of psychiatric hospital beds, the burden of care fell increasingly on parents who were helpless in dealing with daily life problems and increasingly saw themselves as victims of the disease. The burden on the families got a public face fifty years ago in England, when the father of a son who had been diagnosed with schizophrenia and discharged from hospital (in the then ongoing deinstitutionalization movement in England) published an article in the The Times, which described the family’s experience of caring for their son and the burden this implied 21. The article found a huge resonance in families in a similar situation leading to the foundation of the “National Schizophrenia Fellowship” (renamed later to “Rethink”; www.rethink.org) as a self-help and advocacy organisation for family members and carers of persons suffering from schizophrenia 22. Over the following years the idea spread to other countries and similar associations were founded elsewhere – the earliest 1978 in Vienna/Austria (www.hpe.at), which the authors of the present paper helped to see the light of day (other examples are NAMI in the United States - www.nami.org, and EUFAMI covering numerous European family associations - www.eufami.org).

 

(insert box 2 around here)

 

The problems and the burden, which we have identified in these early days (box 2), were wide-ranging and left the families in despair and disarray (box 2) – and they are still the same today 23. It is not only empathy for the parents which should be a motivation to assist the family, but it can also be assumed that a family in disarray cannot be a beneficial environment for a person suffering from a mental disorder characterised by cognitive, emotional and communication problems 24.

1.3 “Working with families” – families as active partners in solving problems


In the 1980ies so-called psychoeducational programmes for families were developed and evaluated. They provided information and support to families in order to better understand and cope with the illness, including information on symptoms, prognosis, and treatments of the diagnosed condition 25 26. Families were not seen as causing schizophrenia but were regarded in some approaches as responsible for relapses and needing, for instance, interventions in relation to their potential “high expressed emotion” (high criticism, hostility and overinvolvement – the latter being often fueled by a mixture of anxiety and guilt), in order to avoid relapses. Results of these and similar studies on “family care” in schizophrenia were promising27 28 29

 

Inspired by these approaches and a nearly decade-long cooperation of professionals with the Austrian family self-help organisation HPE, the “family school for learning how to live with schizophrenia“ was founded in 1986 30. The school (as we call it hereinafter) combines professional knowledge and interventions with the potential of self-help resources of the families. It anticipated some elements of later developments in mental health care, such as attention to the early stages of schizophrenia in young people 31, the hope implied in the recovery concept 32, the idea of a trialogue 33, quality of life issues 34 and the concepts of autonomy, inclusion and empowerment as advocated by the UN Convention on the Rights of Persons with Disabilities (CRPD) 35

 

The approach applied in the school is not called “family therapy” (where the family becomes the object of treatment), but “working with families” 18. Once having accepted the diagnosis and having arrived at a kind of “positive resignation” (Box 1 (5)) families work in partnership with the staff to find solutions to their problems and are seen to have needs and strengths 36. Working with families in the school comprises different components, some nearer to the professional pole, some nearer to the self-help pole, some a kind of mixture of the two as will be explained below (figure 1) 18 37. In the school, “working with families” follows Carl Roger’s principle of “showing unconditional positive regard” for all family members, as well as being warm, empathic and genuine 38

 

(insert figure 1 around here)

 

Since many patients diagnosed with schizophrenia become socially unattractive and have difficulties in building and keeping social relationships, parents who want to care and are willing to learn about the optimal way of doing this, may be the best that can occur to many of these patients. And parents who are members of a self-help organisation are usually of this kind, which was an important motivation for establishing the school.

 

Daughters and sons of families participating in the programme of the school are most probably at a later stage in the disease process than those usually targeted for early intervention in psychosis (EIP) programmes 31 and may have surpassed what has been called the “critical period” for early intervention 39 - but it is still early in life so that, with the regard to a potentially long life ahead, “learning how to live with schizophrenia” makes sense. The course might thus be called late “early intervention in psychosis.”

2. The general setting of the school: A neutral location and a neutral time in a small boarding school programme

During the planning process of the school several decisions were taken jointly by professionals and members of the self-help organisation. First, it was decided that the school should function as a weekly “boarding school” and that it should be established outside psychiatric services, in a “neutral” location. Second, it was understood that enough time must be available for the learning process to take place concerning the complex needs of families, and the duration of the course was set at one and a half years. Finally, it was decided that the number of participating families should be small, to allow for the development of personal contacts and mutual support between families. After some search a location was found for rent which allowed ten families to participate simultaneously in the course. 

2.1 A neutral location - the school as a „theatre stage“ for practicing new behaviours

Since young persons in families, who are eligible for the school, mostly live with their parents, for whom it is difficult to keep the delicate balance between caring and letting autonomy happen (which is expected to begin at that stage of life), it was regarded as essential that the diseased daughter or son live at their own place while participating in the course- and this was also regarded as implying some relief for the parents. The school was therefore set up as a weekly boarding school, where the residents (that is how we will call the diseased daughters or sons from now on) stay overnight from Sunday evening to Friday afternoon and go home for weekends and public holidays. The residents stay at a “neutral location” and not at one of the usual two places - in case of hospitalisation in the “territory” of psychiatry, or otherwise at home with their parents, i.e., at the parents’ “territory”. Each “territory” has its own rules determined by the “owner” of the territory - in the neutral territory of the boarding school none of these two “owners” dominates. 

 

While staying at the school during the week residents have their own rooms, reflecting an important aspect of autonomy (e.g., when parents visit, they have to knock at the resident’s door). Parents come regularly to the place where the residents live and take part in routine activities (involving explicitly also daughters or sons of other parents). We use the image of a theatre stage, where new behaviours can be “playfully” practiced without serious consequences, while participating in the programme. Residents can, without pressure, practice small steps of autonomy, and parents can practice how to let autonomy happen and how solutions to problems can be found.

2.2 A neutral time – participating in the programme as a “journey”


It was decided that the course should last one and a half years. This was a compromise since it had been first regarded as necessary to have two full years (including a few weeks of absence for “vacation”) to arrive at substantial changes. But then it was argued that a two years’ duration would deter potential residents, who would perhaps rather agree to stay just one year, because they and their parents might still press for “success” in life, such as finishing school or getting a job. Finally, one and a half years were chosen, a duration, which has stayed the same over the last 35 years. 

Overall, it is stressed already in the selection process of families that participating in the programme means a pause in life, and that the focus is on the learning process as such, which is made easier without the pressure of the relentlessly progressing time in “real” everyday life. It has shown that it is quite difficult to convey the idea of a break in life, where, while attending the school, no important life changes should happen. It has proven helpful to use the image of a “journey” in a tourist party. A journey has a preparatory stage, in the beginning the members of the tourist party get to know one another; during the main part of the journey the main programme takes place, and for the final section “back to real life” is the issue, with perhaps some sadness that the journey is over. And: During a journey, away from everyday life at home, usually no important life changes take place.

The long duration of one and a half years allows families to experience potential changes in the clinical picture in their own relatives or the daughters and sons of other parents. Occasionally also hospital admissions may occur, but also improvements in the clinical condition can be observed – both processes can prompt discussions about the possible reasons. One anticipated effect of the longer duration was, and has proven to be correct, that some families develop ties to one another, which facilitates mutual support after the end of the school. In fact, we have observed that families still meet one another after the end of the course, and some have even set up shared flats where they continue caring for their daughters and sons following the principles learned in the school.

3. Learning objectives 


Schizophrenia is understood in the programme as a disorder following a “diathesis-stress” or “vulnerability-stress-coping model” 40 41. This implies a shift of emphasis from a fixed diagnostic entity to a dynamic process, where it is suggested that in a vulnerable individual a stressor may trigger clinical phenomena which are characteristic for the diagnosis of schizophrenia, and where interventions may reduce vulnerability or improve coping with stressors. Based on such a dynamic conception of schizophrenia in the community, the English psychiatrist John Wing suggested a list of factors which are potentially under the control of parents 42. The list was partly derived from research findings, showing that environmental factors can influence the course of schizophrenia - such as poor environmental stimulation enhancing passivity and withdrawal 43, while life events 44,“high expressed emotion” and a critical atmosphere in families 24 can trigger schizophrenic episodes. Based on this list we have defined learning objectives and guidelines for working in the school, divided (though they partly overlap into those relevant for the whole family (box 3), those specific for parents (box 4), and those specific for residents (box 5). These objectives are mostly self-explanatory and we will only comment on a few of them here.

 

(insert box 3 around here)

Given the “environmental reactivity” of schizophrenia, John Wing (who was also a cofounder of the English self-help organisation described above) introduced the image that a person suffering from schizophrenia and living outside hospital has to perform a “walk on a tightrope” between under- and overstimulation, and that one can attempt to “create an optimal degree of stimulation”. Too much stimulation may facilitate a psychotic relapse with “positive” or “plus” symptoms – ambiguous and complex communication with lack of clarity and consistency is regarded as such a stressor. Many learning objectives for parents listed in box 4 can be subsumed under this topic. On the other hand, too little stimulation may end in passivity and withdrawal (called “negative” or “minus” symptoms in psychopathology). 

Because of its clear and concrete message, the image of the walk on a tightrope has been found to be especially useful in working with families and it is frequently advocated as a general guideline in the school. The vulnerability-stress-coping model introduces the idea that one can also work on reducing vulnerability. It allows, for instance, to understand the role of prophylactic antipsychotic medication, an often controversially debated topic 45, as a means of reducing vulnerability (or increasing resistance  to stress) - and such framing may increase acceptance of antipsychotic medication. Also, the emphasis in the school on structuring one’s daily life fits into the idea of reducing vulnerability to stress. Given the cognitive and emotional disturbances in schizophrenia, learning how to create and maintain a structure in daily life is one of the objectives, which goes hand in hand with creating an optimal stimulation. Taking part in the course provides in itself the experience of a structure in everyday life as will be detailed below.

(insert box 4 around here)

The learning objectives for parents include coping with specific types of psychopathological phenomena, such as hallucinations, delusions, cognitive disturbances, underactivity and lack of motivation. While difficult to apply in concrete situations, it is suggested trying to react without devaluing the resident’s experiences, but also without plainly accepting them (e.g., in case of delusions: “I accept that you see it like that, but please accept that I do not see it like that”). One of the more difficult situations for parents is to react to underactivity or low motivation. Distinguishing between disease related underactivity, controlled withdrawal to avoid stress, and “laziness” (Is the daughter or son “mad” or “bad”?) is often not possible – and understanding this is already helpful. 

 

Finally, perhaps the most important topic is, how, at that specific stage in life, when young people in general are leaving their families for an autonomous adult life, the appropriate balance can be found between “protection” and “letting loose”, called here “protected autonomy”. The Viennese sociologists Rosenmayer and Köckeis 46 have coined the term “intimacy at a distance” which is used in the school and well understood.

 

(insert box 5 around here)

 

While residents are in ambulatory psychiatric treatment in the local routine services, the programme of the school focuses on behavioural aspects, such as increasing skills of daily living, improving cognitive performance, learning how to avoid specific stressors (such as sidestepping discussions on topics which are related to the resident’s delusional ideas), controlled withdrawal if the environment is getting too stressful. Introducing structure into one’s daily life is one of the basic learning objectives.

4. The school in practice


We are looking back today on the experience gained in 23 completed courses over the last 35 years, during which the working of the school as described below has not substantially changed.

4.1 Location, staff and financing


The school is located on the second floor of a traditional Viennese four-storey residential building near the city centre, in which (on other floors) also other parties are living – so it is literally located “in the community”. It has the name “Pension Bettina” written on its entrance, taken from the earlier function of the flat as a small hotel. We have kept this name, by which the school is well known at the local psychiatric services. The size is 340 square meters, including rooms for residents (the former hotel guest rooms) and functional rooms (living room, dining room which can also be used as a room for group activities, kitchen, bathrooms, etc.). The staff consists of four part-time psychologists, among them the head of staff (there were only two heads of staff in 35 years, guaranteeing a continuity of the concept and its implementation). The staff works in the school during the day from Monday to Friday following a detailed schedule, contained in a set of guidelines and working forms. Night duties during the week are carried out by parents and psychology or medical students. On weekends the school is closed. Each family has a personal staff member assigned, who acts as a case manager throughout the whole course and gets intimate knowledge about the weaknesses, strengths and needs of the assigned family. The staff receives regular psychotherapeutic supervision, not the least to be able to keep the delicate balance between professional and self-help. Financing is provided by local social service departments together with a small co-payment by the families. The legal organisation running the school is a small NGO.

4.2 Selecting families

 

Families are referred for potential participation in the programme by local psychiatric services, where the daughters or sons are in treatment after one or several schizophrenic episodes have occurred. The referring services know about and agree with the principles of the programme and inform and motivate the families to contact the school. Families are seen by the staff in the school and are shown the rooms, including those where the residents would stay during the week. The learning objectives and methods applied are explained to families, as well as the concept of a long journey meaning a pause in life. While the school is focused on the whole family, it also attempts to provide a structure for assisting the residents to improve their everyday, communication and social skills, but it is stressed that the purpose of the school is not to cure the disease but to improve the coping processes. The staff gets an impression of the families, their willingness and capacity for an intensive involvement and enduring cooperation. A practical issue to be considered is that the travel distance of the parents from their home to the school should not be too long, since parents are required to be regularly present at the school. Repeated visits are sometimes necessary, before everyone agrees that participation is desirable and possible. 

 

Once a decision has been made, a contract is signed by the future residents, the parents, and the head of staff, which from the very beginning introduces an element of structure and planning into the whole process. The contract contains detailed duties of everyone in the process of participating in the programme (including detailed house rules). One item in the contract says that an ongoing psychiatric outpatient treatment is required, detailing that the programme is offered in addition to an ongoing treatment in the local routine psychiatric services. The preparatory stage is counted as the first month of the programme, since important discussions are taking place and decisions are being made which determine already to some extent the work to be carried out over the following 17 months. In four of five participating families the resident is a son, and mothers predominate (while in a few cases both mothers and fathers are involved), and the average age of the residents is around 25 years – all these characteristics have not substantially changed over the decades. 

4.3 The time structure of the programme


The time structure of the course has per se an educational purpose. It communicates that structure as such is essential. After the preparatory month, a warming-up phase of approximately three months is defined – after all, moving into the school is a substantial change in the life routine of all participants. The main learning period runs for approximately ten months and is followed by several months with the main purpose of finalising planning for the life after the end of the course. The number of months for each phase is not fixed, but the sequence of the phases communicates a structure (using the image of a journey as discussed above). Throughout the whole course there is a repetitive weekly structure from Monday to Friday, with the school closed on weekends and on public holidays. Finally, there is a daily structure, with activities mainly taking place in the morning and mainly free time in the afternoon.

4.4 Essential activities

The different activities taking place each week from Monday to Friday, and those expected to take place on weekends when the school is closed, are described below (box 6). For understanding how the school works, it is important to describe these activities in detail, and they are therefore explained at some length. In line with the concept of “working with families” they are classified into three groups, considering the degree of professional involvement (figure 1). Everyone is repeatedly reminded to show unconditional regard for one another in all activities, emphasising existing strengths of the other person and cautiously communicating identified weaknesses. All activities where residents are involved are organised in such a way that they are short and that frequent breaks are possible. 

 

(insert box 6 around here)

 

 

  • Activities near the professional pole – “psychoeducational” activities

 

For residents (participants: residents and staff) 

The most frequent symptoms of the residents are negative and cognitive ones, which are known to be related to deficits in communication and social skills in everyday functioning 47. Several group activities with residents, addressing these issues, take place routinely during the week. They are somewhat similar to programmes of psychiatric day services and also convey the idea of a structure and the need for planning one’s activities. Each morning a planning group for the day is run by a staff member; on Friday early afternoon a similar group takes place for planning the weekend. Once a week in the afternoon, rules of living together in the school are discussed in a “house meeting”. In addition, once a week a cognitive training session takes place using the “Integrated Psychological Therapy” (IPT) programme that combines neurocognitive and social cognitive interventions with social skills approaches 48. Finally, once a week the whole group of residents attends a music therapy session outside the school.

For individual families (participants: resident, his/her parent(s) and staff).
The staff member assigned to a family carries out training sessions on communication skills with each individual family by using modules developed by Falloon and colleagues 41. Topics contained in the training are, among others, listening skills, making positive requests, communication of positive and negative feelings. Altogether six training sessions are carried out during midterm of the course, i.e., at a time when the specific problems of each family are well known to the staff, especially to the assigned staff member responsible for the family.

For parents as a group (participants: parents, staff, external expert)
Occasionally the parents’ group, taking place on Tuesday evenings (see c) below), is attended by an invited expert providing information on specific topics, mainly on medical and psychiatric ones, and discussing questions of the parents.

 

 

  • “Learning by doing” activities – organised, task-oriented routine activities with joint participation and encounters of residents and parents of different families, as well as staff, for practicing new behaviour (“in vivo learning”, “vicarious learning”)

 

One of the main features of the programme is that the structure allows and, in fact organises, encounters and interactions between residents and parents from different families in tasks, such as grocery shopping, cooking, cleaning and laundering, in meeting one another in joint excursions and communicating in the evenings when a parent is on night duty. The crucial issue is that parents also meet and interact with a daughter or a son of a different family in specified activities, and thereby learn to distinguish better between behaviour related to the disease and related to the personality, and thus get a frame of reference for better understanding the behaviour of their own daughter or son. Such contacts occur frequently during the one-and-a-half-year programme. In the weekly parents’ group (see c) below) information is shared on observations made in these activities – and the insights are often surprising. A resident’s mother, for instance, experiencing her son as inactive on the weekends at home, may be astonished to hear the positive feedback from another mother who worked with the son in a cooking group during the previous week. It becomes apparent how the long common history of child and parents can shape behaviours or at least can color the perception of each other’s behaviour. What is true for parents is mutatis mutandis also true for residents, since they can make the experience of cooperating and communicating with other fathers and mothers, which provides a new perspective on the relation with their own mother or father. 

Household chore groups with a few residents each and a parent (participants: residents, parents, staff)

These groups take place each morning from Monday to Friday and provide the unique opportunity for residents of cooperating with other residents (the composition of the groups is changed every week) and, when a parent is available, also with a parent on concrete tasks, and vice versa for the parents to cooperate and communicate with different residents. The tasks include cleaning public rooms (for residents with cognitive disturbances clear instructions are detailed in a note on the wall in each room), grocery shopping for meals (learning how to handle money and payments) and cooking meals (simple recipes have been compiled in a cookbook, with an emphasis on cheap and healthy food – preventing later resorting to fast food). The household chore groups also have the purpose of enabling residents to learn self-management and thereby achieve more autonomy in their life after leaving the school.

 

Night shifts (participants: residents, a parent or a student)
There is a special room in the school, where a parent stays once a month for a night shift. No staff is present at night, but there is always a staff member on call. Letting parents make night shifts has two purposes. First, to let them experience responsibility not only for their own daughter or son, but also for others. In the beginning some fears do exist, but by and by parents begin even to like night shifts and are less fearful. Second, parents arrive in the early evening and mix with residents, which leads to experiences of interaction with different residents enabling “vicarious learning”. Since there are more than twenty night shifts necessary per month and only ten participating families, psychology and medical students do the remaining shifts, and through their interaction with residents introduce an element of normality into the school. In fact, residents appreciate the presence of students to a large degree (see Supplementary materials).

Weekly excursion (participants: residents, parents, staff)
Once a week, on Wednesday afternoon, an excursion takes place with the whole group. Residents and parents participate in the planning process. In summer outdoor activities prevail (e.g., going swimming to an open-air pool), in winter indoor activities dominate (e.g., visits to a museum, cinema). Again, residents and parents of different families can experience each other’s behaviour in a normal routine setting.

 

  • Activities near the self-help pole - free time to be structured by residents and families themselves

 

On purpose residents and families have abundant free time during the programme. They are encouraged and “nudged” by the staff to learn how to structure the free time on their own and avoid withdrawal of the residents, which is always a potential problem in schizophrenia. After all, once the course will be finished, it will be necessary to keep a structure, hopefully with organised activities for the residents, e.g., in official occupational trainings, schooling or even in a job. But this may often not be possible immediately, and it has to be learned how to have a day structure, upholding the optimal balance between under- and overstimulation. This is continuously encouraged by the staff during the whole course, and the free time provides opportunities to practice how to structure one’s time. Ideas and examples of how this can be done arise and are discussed in other activities of the school. It has repeatedly become apparent, how creative families can be, if they have space and the time to develop and new ideas and practice them.

Free time for residents in the afternoons and evenings (Monday to Thursday)
Residents are free to do what they want after lunch until around 5 pm, when specific group activities take place (see a) above). The staff encourages residents to carry out activities during that free time, preferably outside the school and preferably together with other residents. Often, however, especially in the first months of the course, residents withdraw to their rooms and take a rest. In the beginning this withdrawal is accepted by the staff - after all, the household chore groups in the morning can be quite demanding. With the passing of time, the encouragement by the staff “to do something” increases, and the understanding of “withdrawal” as a time-limited strategy against overstimulation, called “controlled withdrawal”, is emphasised. In the evenings residents are encouraged to go out (e.g., to a cinema, meet friends), preferably with other residents. This happens more frequently with the passing of time.

Free time for residents and parents on weekends and public holidays
Since the school is closed and staff not available on weekends and public holidays, residents and parents are on their own. Especially in the beginning of the course, many residents, as parents report in the parents’ group, stay inactive and sleep also during the day; this can at first be interpreted as recovery from the strain of taking part in the weekly programme. With the passing of time, it can occur that some residents meet one another for common activities, that parents do the same, and even that a resident stays overnight in another resident’s home. The closing of the school on weekends has also the purpose of keeping parents involved, so that the transition to the time after the end of the course is less complicated. In case any crisis intervention is needed on weekends, families must call the available local emergency services (and thus learn for later how these services work). Finally, each time residents come back to the school on a Sunday evening– and this occurs at least 70 times during the programme – they are learning how to leave home. For some residents this is an exercise for potentially living autonomously after the end of the programme. In addition to weekends and public holidays residents’ families are encouraged to take a vacation of 15 working days with their daughter or son.

Weekly parents’ group (participants: parents, staff; occasionally external experts)
This group takes place once a week on Tuesday evenings between 7.30 and 9 pm. Tuesday was chosen so that parents can report on their experiences with the residents on the preceding weekend. The purpose of the group is to share information, give feedback and provide mutual support. A wealth of topics is discussed (as listed in boxes 1 to 5). Especially experiences of cooperation and contacts with residents of other parents in the mentioned organised activities during the week are shared. An important function of the group is the experience of not being alone with the problem of having a daughter or son diagnosed with schizophrenia. Showing comfort for and helping each other has shown to be a powerful factor for helping oneself. Friendships may develop, which may remain after the end of the course in some instances. One other important feature is that parents give feedback to one another about what they can do for themselves, instead of completely sacrificing themselves for their children. The group is always attended by two staff members, who avoids direct interference, but in appropriate situations, provide remarks on specific topics and behaviours in the sense of a “guided discovery” approach, i.e., helping parents to become aware of certain aspects of their behaviour. On several occasions a psychiatrist joins the group to provide information on medical issues, especially on medication, which is always a hot topic – this is a psychoeducational component of the programme (see a) above). It is often difficult to come to an end within the 90 minutes foreseen for this group, and it is not rare that parents continue the discussion in a pub. Given the many sensitive topics discussed in this meeting it is agreed that all information received about other families remains in the group.

5. Discussion and limitations

 

Due to la ack of resources and skepticism among professionals the involvement of families is not routine yet in psychiatric services, as a recent review has shown 1. The authors conclude that the involvement of families may require a cultural and organisational shift, since family work can only be implemented if this is considered a shared goal of all members of a clinical team or mental health service. The approach of the school, as described in the present paper, is one possibility of providing - as an add-on - assistance to families with a daughter or son diagnosed with schizophrenia early in life, who is in treatment in routine psychiatric services which are not able, but value the oppartunity to provide systematic assistance to the families of their patients. 

 

While the school applies several known professional and self-help approaches, its unique feature is that it uses the format of a boarding school, i.e., of a neutral territory, to provide learning experiences over the long period of one and a half years for families with a daughter or son diagnosed with schizophrenia early in life. Frequent encounters at the school between parents and residents across different families provide the opportunity of “experimenting” with and learning new behaviours and skills, mainly through “learning by doing” and “vicarious learning”. Since ten families as a group begin with the course at the same time, relationships of mutual support can develop, and remain often after the end of the programme. The main objective is that parents learn to keep the delicate balance between caring and letting the daughter or son live in autonomy, a concept called “protected autonomy” and to assist residents in developing skills for an autonomous life after the school.

 

Until today around 230 families have finished the course since the foundation of the school in 1986. Since the school was not set up as a research project no continuous evaluation was performed. A few illustrative data are available though. A three-year follow-up study on the first five courses (1986 to 1994) showed large improvements in the well-being of ex-residents and parents in several parameters. An anonymous assessment of the of the four most recent courses (2015-2021) by parents demonstrates high satisfaction of parents with what they have learned (for details and references see Supplementary materials).

 

In practice there are several limitations. First, the school is not suited for all families. When parents work fulltime, participation is not possible, since at least one parent has to come to the school regularly. Second, as stated above, both the potential residents and the parents have to agree (and sign a contract) to participate, and this agreement is carefully evaluated by the staff. Nevertheless, over the last 35 years, around on average one in five families have dropped out during the first few weeks of the programme and were replaced by families on the waiting list. The most frequent reason for dropping out was that the residents did not want to continue, since the programme was regarded as too burdensome - and ended their participation by simply not returning to the school after the weekend. Another reason for dropping out early was, that residents, contrary to the time before entering the school, suddenly feared a delay in obtaining a degree at the university or missing a job opportunity. Severity of the disease in terms of positive, negative, or cognitive symptoms could be an exclusion criterion, but not necessarily so. Concerning the daily routine at the school, it is often the case that, in contrast to the ideal picture drawn above, limitations arise in coordinating ten families for the programme. While keeping to the basic philosophy of the school, the staff has to be extremely flexible and willing to make compromises, for instance, in the case that parents cannot come to the school for an agreed activity, or that residents cannot participate in a specific planned active because of an outside medical or psychiatric appointment. In rare instances a short hospital admission might become necessary during the programme. In that case, the place is kept for the resident, so that he/she can return to the school after discharge from hospital. In recent years, the risk of using drugs has been increasing in young people diagnosed with schizophrenia, which often leads to difficult decisions whether to admit a family or not.

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About the authors

Heinz Katschnig

Author for correspondence.
Email: heinz.katschnig@meduniwien.ac.at

Peter Sint

Email: peter.sint@chello.at

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Copyright (c) Katschnig H., Sint P.

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