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Alternative approaches to first break situations: key practice models and their operant values.

By Peter Stastny, Rabea Chaudhary, Nazlim Hagmann
Published: April 30, 2012
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II. Definitional matters: What do we mean by FIRST BREAK? The authors who contributed to the four working papers collaboratively defined “First Break” as: First experiences of distress or transitional crisis that bear a significant risk of institutional mental health intervention and/or other forms of social control. Not all experiences of distress bear a risk of institutional social control, but the most common ones that do are associated with diagnoses of depression, non-affective psychosis, and personality disorder (e.g. Ballerini et al. 2007). We are certain that psychiatric labels do not correspond to the actual experiences of the person in crisis. Irrespectively, mainstream psychiatric literature insists on diagnostic categorizing as an essential element to starting the treatment process. It is worth mentioning that alternative programs generally eschew the use of terminology implying chronic disorders (with important exceptions – such as the use of the term “schizophrenia” in the first set of Soteria studies). We will reflect the practice of non-labeling by refraining from using diagnostic categories in selecting the alternatives to be studied in this paper. We will instead inquire into and report the self-selected diagnostic or descriptive terminology most commonly used in each alternative studied. Our definition of first break tracks with the practices of the selected alternatives. In our understanding, first break is a socially constructed event and highly contextualized. The alternatives studied in this paper seem to have restricted the definition of first break to the first crisis sufficiently “severe” to risk high intensity and potentially highly coercive interventions -- such as removal from the home, segregation in specialized settings such as psychiatric hospitals, and at times involving law enforcement or other community authorities. THE DILEMMA OF IDENTIFYING ALTERNATIVES Our analysis asks the question of what characteristics alternatives actually have. The authors did agree on some important qualities we feel alternatives should have which we wish to briefly describe at the outset. But perhaps describing alternatives’ negative characteristics – i.e. what they do not do – is easier than describing their positive characteristics – i.e. what they do. Within the mental health community and the literature, alternative modalities are those with proven track records in supporting recovery from crisis without resorting to coercion, hospitalization, unnecessary use of medication, and/or alienation from the community (see Stastny & Lehmann, 2007; Mosher, 2008). What do we mean by “alternatives” and what are they alternative to? When considering mental health care, a large number of people who have been through it wish for a different experience in the future. In that sense, alternatives are any kind of help, support, intervention that sets itself apart from the mainstream of mental health treatments, from medical psychiatry, for compulsory services and from measures that purport to help, but frequently do not, and quite often are actually inflicting harm. But alternatives should also have positive attributes, rather than just position themselves as antidotes to conventional treatments. They need to be experienced as helpful, and they cannot merely be adjuncts to other treatment. When a person is in a dire emotional crisis, an alternative must offer a substantial chance for amelioration as an independent intervention, without being positioned merely as a supplement to the really powerful interventions. In other words, if someone is so troubled (or troubling to others) that they stand a good chance of being admitted to a psychiatric hospital, given powerful psychotropic medications, and often deprived of liberty, dignity, and freedom of expression (- the apparent signature of conventional and involuntary intervention -), an alternative must at least be capable to avert such an outcome. In this paper we use “alternative” to refer to institutional efforts to provide caring and helpful interventions. In other words, a group of people - frequently mental and social health professionals, but more recently also peers experienced with psychiatric treatment - fashion a service that caters (at least in the US) to people in a specific kind of emotional distress. They often share a perception that conventional services are disorganized, miss the mark, add insult to injury, and don’t really help. Survivors are often among their ranks. We are not suggesting that the informal supports provided by friends and family members when someone is in dire straits are unhelpful. The persistent presumption that professional support is superior to certain kinds of family support seems no longer tenable, and certainly peer-influenced support processes are some of the most promising American developments. We choose to focus on formal, organized and sustained offerings in order to explore new directions for legally sanctioned professional treatment and its values, methods and results. The minimal criteria that a service must display to be considered an alternative – not only for this paper, but also as a matter of a widely applicable principle – is a contentious business. It is quite possible that applying a stringent set of criteria, endorsed by a group of contemporary advocates with a strong representation of consumer/survivors, would result in the elimination of all existing and historical alternatives developed for first break situations. This would put us in a situation where previous and current work being conducted within the spirit of truly wanting to offer an alternative to mainstream psychiatry and the biomedical model, would cease to be viewed as a potential resource for developing new and more widespread alternatives. Therefore we would like to offer the following markers that we developed and the resulting analyses of three major programs in a heuristic vein, rather than as a categorical, exclusionary approach. In other words, let’s not throw out the baby with the bathwater. Let’s see what we can learn from those few efforts that are well documented and seem to have helped a sizeable number of individuals, at least according to their literature. What is however glaringly lacking, and we will return to this fact in our conclusion, are subjective reports by individuals who have experienced one or the other of these alternatives first hand, and by their supporters, which would add an important dimension to the clinical and professionally-driven reporting that is available. At the first INTAR gathering in 2004 participants developed a comprehensive catalogue of values and attributes an alternative should be offering, both as tangible and less tangible dimensions. The group deferred defining the minimal requirements, reflecting both diversity of opinions and caution. Further discussions occurred at subsequent INTAR meetings without arriving at a formal consensus. Based on these discussions, and our own deliberations, we came up with the following list of six key markers to help us situate the alternatives we considered within the context of our prior work, reflecting the views of a heterogeneous group of individuals experienced and concerned with the practice of alternative interventions (see: for the INTAR mission statement). Markers applied to alternatives for consideration in this study: 1. Intentionally organized 2. Does not employ compulsory/involuntary interventions, as a component of the program, including admission to the program. (They are rather considered an undesired outcome in situations when the program fails to avert such interventions). 3. Able to respond to individuals in crisis situations, especially those who may otherwise be hospitalized 4. Human contact, communication, dialogue, “being with”, practical and emotional support are key elements of the program 6. Not attached to a hospital (This dimension was challenged by one of the three authors—N. Hagmann—suggesting that it may indeed be possible to develop valid alternatives even in affiliation with a functioning psychiatric hospital. It is worth noting that one of the three approaches we studied closely—Open Dialogue--did in fact originate in connection with a local psychiatric hospital in Finland). III. PRIOR ACCOUNTS, SURVEYS, REVIEWS OR META-ANALYSES ON CRISIS ALTERNATIVES This paper is by no means the first effort to characterize a range of alternatives to traditional mental health intervention. It is however the first effort to use such characterization with the goal of engaging it with three other important perspectives on first break situations: subjective/first-person accounts; family involvement; and the capabilities approach. It goes well beyond the scope of this working paper to describe and distinguish this eclectic group of publications. For now, a mere listing of them in chronologic order must suffice. They could serve as background materials for any further publications that could come out of this work. H. Richard Lamb (1979) Alternatives to Acute Hospitalization. New Directions for Mental Health Services #1, Jossey-Bass. Beth A. Stroul (1987) Crisis residential services in a community support system. National Institute of Mental Health: Rockville MD. 152 p. (does not focus on first breaks). Kerstin Kempker & Peter Lehman (Eds). (1993) Statt Psychiatrie. P.Lehman Anti-Psychiatrie Verlag, Berlin. (In German; includes many chapters about working alternatives). Richard Warner (ed.) (1995) Alternatives to the hospital for acute psychiatric treatment. Washington D.C.: American Psychiatric Press. Loren Mosher (1999) Soteria and Other Alternatives to Acute Psychiatric Hospitalization A Personal and Professional Review. The Journal of Nervous And Mental Disease 187:142-149. Susan Stefan (2006) Emergency department treatment of the psychiatric patient – policy and legal issues. Oxford University Press. 232 p. (has a section on alternatives to ED intervention). Peter Stastny / Peter Lehmann (Eds.) (2007) Alternatives Beyond Psychiatry. Berlin • Eugene, OR (USA) • Shrewsbury (UK): Peter Lehmann Publishing. 453 p. John R. Bola, Klaus Lehtinen, Johan Cullberg and Luc Ciompi (2009). Psychosocial treatment, antipsychotic postponement, and low-dose medication strategies in first-episode psychosis: A review of the literature. Psychosis, Vol 1, No. 1: 4-18. Brynmor Lloyd-Evans, Mike Slade, Dorota Jagielska, and Sonia Johnson (2009) Residential alternatives to acute psychiatric hospital admission: systematic review. The British Journal of Psychiatry (2009) 195: 109-117 IV. METHODOLOGY OF REVIEW We decided to take an in-depth look at programs/interventions that were developed specifically to address persons experiencing a major crisis for the first time (“first breaks”), and that appeared to fit within the bounds of the markers we identified earlier. In other words, we wanted to include only those programs whose mission and practices were likely to be consistent with those markers. After a cursory look at the available literature, we determined that there were only three distinguishable efforts in this area that were likely to fit this bill: Soteria, Open Dialogue and the Parachute Project. Each of the three authors took on one of these three programs for in-depth analysis and put together an initial bibliography. The senior author reviewed these bibliographies for completeness. We created a set of query variables listed below, which we applied as a guide when reviewing the three programs. Query variables 1. Location(s) 2. Organizational structure (internal & external) 3. Funding 4. Who initiated the project? How long does it exist? Have there been major changes in its organization, philosophy or funding since the start of the project? 5. Target group served, including any exclusion criteria 6. Diagnostic/descriptive terminology used 7. Number of people served (residential, non-residential), per day and per year. 8. Average length of stay 9. Types of services offered 10. Medication use 11. Daily routines 12. Are there any outcome studies or evaluations available? Who conducted them and how? Who were they funded by? What do they show? 13. How is the program advertised? Accessibility? 14. What is the guiding philosophy? Any specific guidelines, mission statements, etc. 15. Educational and experiential background of staff; proportion of consumers/survivors among staff and their positions 16. Staff training and supervision 17. Program participants’ involvement in decision making 18. Family and community involvement 19. Linkage/integration with other services (i.e. medical) 20. Any systemic problems or untoward effects encountered by the program V. PROGRAM ANALYSIS SOTERIA & Soteria replications (primary author: Nazlim Hagmann) (Soteria House & Emanon, California – historical; Bern/Switzerland – currently operating; Alaska – has just opened; Zwiefalten/Germany – small; Soteria Nacka, Sweden) Soteria, a Greek word meaning “deliverance,” was the name of a community-based, experimental residential treatment facility. It operated from 1971 to 1982, in the San Francisco Bay Area and was the site of a federally-funded outcome study headed by Loren Mosher & Alma Menn. Origins: Soteria embraced elements of practice from the era of “moral treatment”, Henry Stack Sullivan and Frieda Fromm-Reichmann’s notion of the healing potential of human relationships, the phenomenological school and was also influenced by antipsychiatrists such as R.D. Laing and David Cooper, and the founder of Democratic Psychiatry in Italy, Franco Basaglia. Its origin as a research study comes from a proposal by Rappaport and Silverman for a drug/non-drug random assignment study at Agnews State Hospital in CA (Rappaport et al., 1978). The idea was formulated by the psychiatrist Loren Mosher who later became the editor of Schizophrenia Bulletin and the Director of the NIMH section on Schizophrenia (for further details about Dr. Mosher’s life and work see Guiding Principles: Soteria staff and investigators viewed a “schizophrenic reaction” as someone’s altered state of consciousness in response to a crisis. It was understood that the entire surrounding of the disturbed and disturbing person experienced a crisis, not just the individual. The residents experience was regarded as real, capable of being understood and valid, and the staff’s major function was to help provide an atmosphere of acceptance of strange states of mind and to facilitate its integration into the resident’s life. Everyone was entitled to his or her view of “reality”. The shared view was that psychosis could be a positive learning experience. Interfering with or controlling unusual behavior was forbidden unless a situation became dangerous. Staff and residents normalized the experience of psychosis by avoiding jargon, labeling and diagnosing (although the research project did employ diagnostic criteria). Soteria staff believed in “being with” instead of “doing to” residents. They described three stages of being with: 1. bonding, (major crisis, when the resident most needed basic care) 2. reconstitution (when a resident reestablished his/her personality in relation to the new surroundings) 3. extension (when the resident began to expand the boundaries of their relationships to others) The experience in Soteria rested on interconnections and a sense of community. The necessity of developing symmetrical as well as complementary relationships was emphasized and acknowledged. It was believed that change occurred through normal interactive processes, when the system’s members come into contact with each other. Residents spent sufficient time to imitate and identify with staff members, volunteers and other residents in ways that allowed mastery of new strategies for coping. The staff and residents kept in touch even after leaving and formed the greater Soteria Network. Lines of authority and roles were not clearly delineated. A dyad was viewed as the primary interpersonal unit. The social context offered residents a setting in which the implicit expectation was that they sort out what they wish to be from that which others want them to be. The presence of multiple, shifting and often ill-defined roles and relationships created an environment that could respond rapidly and flexibly to changing demands. The functioning of Soteria was based on the following operational elements: 1. willingness on the part of the staff to view residents as peers 2. a process that encouraged residents and staff to establish and maintain a shared, equal relationship, 3. available network space. Neuroleptic drugs were used as infrequently as possible and preferably not at all. Residents did not receive any neuroleptics in the first 6 weeks. The non-professional staff had primary responsibility, power and authority in the Soteria community. It was an alternative to hospitalization rather than a follow–up to it. There were only a few explicit rules: 1. violence to self and others was forbidden 2. no illegal drugs were allowed, under any circumstances 3. sex between staff and residents was forbidden. Organizational Structure: At any point in time, the original Soteria House included a group of 10 to 12 individuals sharing a home-like environment. The program aimed a ratio of seven part- and full-time staff to six residents. Two people were always on duty. Staff and clients were responsible for the daily functioning of the house. Staff was unburdened by preconceived theories, free to be themselves, to follow their untutored responses, and to be spontaneous with psychotic individuals. The staff was trained on the job, especially during the initial six months of the program. The staff was mainly under 30, middle to lower class and free of therapeutic or political rigidity. It included many volunteers. More seasoned residents were encouraged to help out their peers as they became better integrated. The differences in individual members were recognized, allowed and encouraged as useful and essential. Residents, staff, volunteers and administrators were introduced to Soteria through auditions. Residents had a two-week courtship period. The sources of authority at Soteria were not based on policies and procedures defined by the administration but in the behavior of the members of the community as a whole. Traditions played a major role and a rich history transmitted through social networks influenced the course. Administrative staff was responsible to represent Soteria to the outside community, to attend to forces that impinged from outside and report the findings to clinical groups. Funding: The program was received principal support for services and research from a series of NIMH grants between 1970 to 1984. In addition it received support from the Community Mental Health Center in San Jose and the Comprehensive Education and Training Act (for hiring research assistants and staff). Inclusion Criteria for the Original Soteria Study 1. diagnosed as DSM II Schizophrenia by three independent clinicians 2. deemed in need of hospitalization 3. exhibiting four of the following symptoms: thought or speech disorder, catatonia, paranoid ideation, blunted or inappropriate emotion, disturbed social behavior and interpersonal relations, hallucinations and delusions 4. no more than one previous hospitalization lasting 30 days or fewer 5. aged 18 to 30 6. single Random assignment occurred to inpatient treatment or Soteria Outcomes: Data were collected at entry, six weeks, six months, one and two years post admission. Soteria successfully established and defined a replicable social environment whose characteristics were stable over time. The milieu offered high levels of involvement, support, spontaneity, personal problem orientation, tolerance to anger and aggression, lower levels of staff control, program clarity. Clients admitted were successfully cared for without the use of chemical/ physical restraints. The six week outcome was comparable to a hospital setting in alleviating “acute psychotic symptoms At two years, those 43% of Soteria residents who had not been exposed to antipsychotic drugs had better outcomes than the Soteria group as a whole. 75% of the residents of Soteria either never or only briefly received medications. Soteria residents did significantly better two years after entry on outcome measures comparing rehospitalization, psychopathology, independent living, working and social functioning tham the control group. Subsequent studies Only Soteria Bern was evaluated with a rigor comparable to the original studies of Soteria House and Emanon by Mosher & Menn. While replicating the basic components of the original Soteria programs, Soteria Bern under the leadership of Luc Ciompi was more psychotherapeutically oriented, with greater professionalization of staff, and ultimately considerably more use of neuroleptic medication. The integration of Ciompi’s affect-logic and vulnerability models of psychosis with Loren Mosher’s essential atheoretical approach was bound to be problematic, resulting in a much greater emphasis on clinical processes in Bern, a greater length of stay, and progressively less emphasis on “being with” individuals in acute psychotic states. The only published outcome study of Soteria Nacka in Sweden (Lindgren et al. 2006) revealed a drastic change in some of the fundamental principles of Soteria, by including brief inpatient stays based on the “need adapted approach” as an element of the program. OPEN DIALOGUES (primary author: Rabea Chaudhary) Open Dialogue (OD) is a crisis response method currently available to all Finnish Western Laplanders who contact psychiatric services, though it was initially designed to address first-episode psychosis. A permanent, multi-specialty team of service providers conducts open, supportive and respectful meetings – which combine treatment planning and therapy – with the client’s family and social network. (Seikkula et. al 2006) Origin OD transformed the system of first-episode psychosis care in Western Lapland, the small region of Finland where it has been cultivated from the mid-1980s. Before its introduction, the incidence of schizophrenia in the region was significantly higher than in the rest of the world (Seikkula et al. 2001). Practitioners were concerned that the high rate of mental illness was due to sociological, economic and psychological factors. Concerned, too, about the efficacy of their treatments, they observed that their psychiatric crisis service had an adversarial character and that treatment planning resembled scripted, prescriptive monologue. The positive regard staff had for “Others” – perhaps a byproduct of Finland’s small, largely homogeneous population – did not seem to find expression in their adopted biopsychiatric and American family therapy methods. Jaakko Seikkula and several colleagues used Tom Anderson’s innovative Reflective Team approach (Anderson, 1991) and the Finnish need-adapted model (Alanen) as starting points to develop a germane alternative to prevailing methods. OD began at Keropudas Psychiatric Hospital and soon incorporated the region’s outpatient clinics, which collectively served a population of 72,000. Guiding Principles Creating an emotional climate in which people affected by a crisis – ranging from any involved professional to clients, their family members, and their social networks – can anticipate and tolerate ambiguity and uncertainty is one key goal of OD. In the treatment process, participants are cautiously discouraged from assuming authoritative stances or seeking to quell anxiety by reaching for quick, “objective” answers. Collaboratively, the treatment team, the identified client and the family develop a new language that helps them navigate a crisis. Polyvocality and capacity are the hallmarks of the new language – it amplifies rather than silences diverse voices and in doing so brings up painful or blocked experiences that would otherwise not be articulated, shared, or transformed. An atmosphere of shared or dialogical mutual respect emerges and participants gain a renewed sense of their inner and outer resources in successful dialogues. The seven main principles of OD are: 1. Immediate help (within 24 hours of first contact by anyone; the goal is to prevent hospitalization) 2. A social network perspective (People who are important in the client’s life at this time (e.g. family, friends, co-workers) or will be in the future (e.g. social service providers) are invited to attend OD meetings) 3. Flexibility and mobility (Treatment is adapted to the needs of the client within his or her network; meetings are held, ideally, at the home of the focal person) 4. Responsibility (The client and his or her network are not allowed to slip through the cracks. A team is constructed immediately) 5. Psychological continuity (The treatment team is assembled immediately and stays together “for as long as needed in both the outpatient and inpatient setting” (Seikkula et al. 2001, p. 250) 6. Tolerance of uncertainty (The emergence of needs, desires, and conditions is systematically encouraged and awaited in daily meetings before joint treatment decisions are made. Neuroleptics are not to be prescribed immediately.) 7. Dialogism (The goal is to cultivate an atmosphere conducive to dialogue rather than to force a change) (Adapted from Seikkula et. al, 2001) Organizational structure (internal & external) Finland’s small size, along with government-provided medical coverage and social benefits, apparently permitted a highly attractive unification of the health care infrastructure. Compared to the United States, care for individuals takes place against a systems backdrop. Collaboration is not ad hoc, but systematically encouraged and facilitated across specialist disciplines and amongst different levels of care. Continuity of care is emphasized as is responsibility for clients who seek help. OD program attributes are integrated into the health care infrastructure of Western Lapland - atypical for most programs called ‘alternative’ but also atypical for mainstream psychosocial health services. The psychiatric hospital in Western Lapland actively seeks connections with both outpatient clinics and non-health service providers. A non-biopsychiatric communal language grew amongst providers when most inpatient and outpatient staff took a three-year training in family therapy (Seikkula et al. 2006). OD efforts to bring mainstream services into concert with its relatively alternative treatment protocol seem to have been quite successful. Funding Funding for the original systematization of Open Dialogue appears to have come from within the normal operating budget of the psychiatric hospital and clinics. Later, the OD project findings were turned into literature more amenable to mainstream scientific media and audiences through funding that arrived as part of nationwide schizophrenia studies. Aims The OD program had several specific goals. One was to reduce, postpone, or avoid neuroleptic drug use in first episode psychosis care. Another was to reduce or avoid inpatient hospitalization. (Seikkula et al. 2006, pp. 217-218) Types and numbers of people served The published follow-up studies included complete data sets for 33 and 42 first-episode psychosis clients over a five-year period, with 39 and 51 clients beginning treatment in each period, respectively (Seikkula et. al, 2006). Open Dialogue was the method of treatment for all persons presenting for treatment of first-episode psychosis in Western Lapland during these periods. However OD serves everyone referred in crisis or to hospital – even those for whom family therapy is not indicated. Types of services offered Within 24 hours of first contact, the first person contacted schedules a meeting between a treatment team and the client and network. If hospital admission is a possibility, a team including inpatient staff and outpatient continuing care providers is assembled to meet with the client and family members; the team and client-network jointly considers admission to the program. When inpatient treatment is not being considered the Open Dialogue treatment team is assembled by the outpatient clinics and consists of mental health service providers as well as staff from supportive agencies as appropriate for the client. Otherwise Open Dialogue work begins on the inpatient unit. Teams may thus include social workers, psychiatrists, nurses, and psychologists from inside and outside the hospital. The team assembled at first contact remains involved with the client and network for the duration of treatment, regardless of length. This continuous team provides distressed client networks with a sense of continuity and predictability (Seikkula, 2006) and a promise of calm engagement. Treatment planning is collaborative. Conversations amongst the team, the client, and the network are conducted with the goal of “opening up a range of alternatives from among which a course of action is chosen” (Seikkula, Alakare, & Aaltonen, 2001, p. 253). In order to conduct treatment meetings in this way, the team and the client network co-develop a specific language to honor and animate tense and suppressed issues in the family. The new language and atmosphere created jointly by the team and social network is one in which strong emotions can be expressed and experienced together by all present (Seikkula & Trimble, 2005). The dialogical or polyphonic internal structure of the new language anticipates, and respects, diverse voices within the network – including voices associated with psychosis. Biopsychiatric languages of pathology and diagnosis typically demean or invalidate psychotic voices, leaving the speakers marked with stigma; they are shamed and deemed socially undesirable and legally unfit to make decisions. “People with psychosis attempt to make sense of (and adequately describe) their experiences, but…this process can be impeded by dominant, subjugating narratives, which block alternative stories and thus reduce independence, choice, and agency” (France & Uhlin, 2006, p. 61). In Open Dialogue, psychotic voices and behaviors are not suppressed and the team responds immediately to psychotic expressions: “[W]e found that in the first meeting with a severely psychotic patient, if we did not respond immediately to the patient’s psychotic utterances or to first tiny signs of the patient’s reflection, the possibility for dialogue might be lost, leading to poor treatment outcome” (Seikkula 2005, p. 466 - FAMILY PROCESS 468 / Fam. Proc., Vol. 44, December, 2005). Medication use OD aims to reduce or avoid both hallmarks of biopsychiatric treatment, the linked phenomena of neuroleptics use and inpatient hospitalization. Neuroleptics and hospitalization appear to discourage clients from discovering and using their inner personal and social resources (Seikkula and Arnkil, p. 162). Low-dose anxiolytics are the preferred medication. In studies, neuroleptics were used with approximately 26% of clients in first-episode treatment. At the five-year follow-up 39% in an early group and 29% in a later group had been prescribed neuroleptics at some point. 24% and 17% were receiving ongoing neuroleptic medication, respectively. Seikkula et. al suggest practitioners may have an increased readiness to use neuroleptics in cases of relapse. Daily routines The goal of mobilizing and articulating unexpressed difficult emotion within the client network discourages inpatient hospital admission. The treatment team organizes almost daily meetings in the first few days with the client network. Alterations to preexisting daily routines for client networks are made only collaboratively. Seikkula et al. do not detail inpatient hospital unit practices except to remark that biopsychiatric habits are more prevalent inside hospitals. Outcomes OD outcome studies – conducted for the sake of comparison with mainstream treatments – do not strongly resemble those of U.S. biopsychiatry. In assessing client outcomes, they weighted evaluation criteria towards quality of life considerations for the client and long term results rather than towards the self-referential benchmarks of mainstream psychiatry. OD outcome studies assess richness of social networks, hospitalization days, relapse rates, use of neuroleptics, and employment status (Seikkula et al. 2001b). Results suggest that neuroleptic use and hospitalization increased the likelihood of poor outcome, that increased duration of untreated psychosis increased the likelihood of treatment initiated with neuroleptics, and that clients who go through Open Dialogue are almost twice as likely to be employed or studying, and half as likely to be on disability support than people who go through mainstream treatments (Seikkula et al. 2006). Successful outcomes are associated with socially-constructed narratives that include “actual illness related experiences as well as dimensions related to a sense of independence, agency, and choices (Holma & Aaltonen, 1997)” (France & Uhlin, 2006, p. 61). People are helped to speak about their experiences in a self-empowering way. An internal vacuum, vulnerable to being filled by external or authoritative monologues, is often the result in the absence of a valued narrative. According to Seikkula and colleagues the biggest challenge to OD treatment is “organizing treatment in cases in which the family had few possibilities for developing a linguistic description of their life” (Seikkula et al. 2001b, p.281). The treatment team’s adherence to treatment principles are a major component of the OD outcome studies and the teams do not always meet their own standards. Although OD strives to provide continuity in treatment, institution-wide implementation was not immediate, uniform, and consistent amongst staff members, even if they receive similar training. Significant variations seem likely in any need-adapted treatment; these variations complicate attempts at statistical standardization. Program accessibility The program is notably accessible. There is no trouble in finding out about or locating the service and integration with ancillary crisis services seems to be complete. This is truly remarkable; no other alternative crisis service has ever been connected with the equivalent of “911.” Also, accessing the program does not depend on the client receiving an accurate intake diagnosis of first-episode psychosis. Open Dialogue advocates viewed their success in creating a culture of Open Dialogue in the family as dependent on a new positive attitude to collaboration amongst providers. Their painstaking, persistent internal efforts resulted in a kind of systematic support for innovations attempted in the psychiatric unit. Now, the “entire state public psychiatric system-including both inpatient units and outpatient clinics-is organized around the idea of bringing patients together with the people in their social networks in open treatment meetings, starting with the first contact and continuing throughout the entire process“ (Seikkula 2002, p. 263). Conclusion Comparison to the U.S. usefully highlights the great differences between OD and the US treatment. In the United States health care generally centers around the individual at an acute and late stage of crisis. Even in an integrative field such as psychosocial health services, individual care is dominated by specialists with few mechanisms for interspecialty collaboration. The mainstream system is fundamentally fragmented, leaving it unable to integrate complex human needs; consequentially those in need of services cannot access comprehensive, relevant long term care. Mainstream psychiatry certainly is not capable of providing any attachment-oriented therapies. Initially we proposed that, amongst their other features, alternatives should not be connected to a hospital, should not administer neuroleptic medications and should not accept compulsory patients. I don’t think OD should be ignored based on these criteria which have, admittedly, a somewhat diagnostic character. The OD project is trying to bring ‘alternative’ voices into the mainstream and give them a constant, consistent place to be heard. The program takes complete responsibility for its clients and does not demand their marginalization. Importantly, I think, the program stops scapegoating a ‘focal’ patient not only through education, but through its very infrastructure. The client, family, and social network are but half the picture and OD practitioners acknowledge the role of the treatment team. OD asks practitioners whose past experiences (i.e. specialist trainings) may have made their relationships strained and tense to work together respectfully to create a coherent atmosphere that is open and diverse, yet unified and supportive. I think they have managed to create a real alternative to psychiatric crisis treatment – one that adequately prepares the ground so that first break can be a real opportunity for growth. The Open Dialogue program seems to have integrated many therapeutic findings from collaboration research into the service delivery infrastructure. Seikkula and his colleagues created a learning community amongst the psychosocial service providers in Western Lapland, a group numbering about 100 people in various specialty disciplines. They paid attention to the needs and unique characteristics of their clients, their clients’ families, and the social groups that would help their clients recover, and constructed treatment accordingly. It appears they, as service providers, did not ask their clients to do anything they were not ready to do themselves. Often medical and psychosocial service providers from different disciplines relate to one territorially; their cooperation is uneasy and hierarchical or scripted. In average service a client’s psychologist and psychiatrist may be working at cross purposes and never even share the same room. PARACHUTE PROJECT (SWEDEN) (primary author: Peter Stastny) Definition: The Parachute Project is a research and demonstration study initiated in 1996 by the psychiatrist Johan Cullberg at the Karolinska Institute in Stockholm, Sweden, offering an experimental treatment to 253 individuals diagnosed with psychosis for the first time in their lives. Study participants were enrolled in 18 outpatient clinics across Sweden, and their data were compared to two groups of first episode patients, who had not received (historical group) or were not offered this treatment (prospective group). Results of the study have appeared in the psychiatric literature since 2001. Origins The origins of the Parachute project are intimately tied to the work of Johan Cullberg, a Swedish psychiatrist, who mentioned at the 2008 INTAR conference in Toronto that his brother had been diagnosed with schizophrenia many years ago. His brother was hospitalized many times and received hundreds of electric and insulin shock treatments, which prompted Dr. Cullberg to devote himself more thoroughly to the treatment of persons diagnosed with schizophrenia. Cullberg began his career working with women who lost a child at birth, experiences he described in a book called “Crisis and Development” (Cullberg, 1975). He was an early promoter of psychotherapy for individuals with psychotic experiences, and became very interested in the work of Mosher, Ciompi, Alanen, and the Finnish school of needs-adapted treatment. The experience of his brother convinced him that treatment had to be humanized, be offered outside of the confines of a hospital, and integrate biological and psychosocial approaches. He also believed that medications were a necessity for most people who experienced psychosis, but that they should be given in the lowest effective dose. His perspectives are fully expressed in his book “Psychoses – An integrative approach” (Cullberg, 2006, Routledge: East Sussex and New York). The Parachute project was preceded by a 5-year follow up study (Svedberg, Mesterson & Cullberg, 2001) of 71 “first time consulting patients of 18-45 years of age seeking help for psychosis in three catchment areas in Stockholm during the years 1991-1992).” The outcomes of this study showed an incidence rate pf 34.8/100.000 which was higher than expected. 60% were diagnosed with “schizophrenia syndromes” according to DSM IV. Of the “schizophrenia group” 73% were on “sick pension or long term sick leave” compared to 39% of the “non-schizophrenic patients”. The authors concluded that the “incidence of first episode psychosis is higher than has earlier been found, when exclusively outpatient treated patients are also included. The social outcome is negative, even in the non-schizophrenia group. Non-compliance with medication and insufficient clinical follow-up may have worsened the results.” This study was used as justification for initiating the Parachute Project. It appears that neither consumer/survivors nor family members were involved at any stage of the planning or implementation of the Parachute Project. Aims and guiding principles The authors offer the following points as justification to initiate a study as complex and far-reaching as the Parachute project: 1. “Devastating routine overuse” of neuroleptic medication 2. Lack of continuity in services 3. Insufficient focus on prevention of relapse 4. the importance of psychotherapeutic approaches for the individual and the family 5. the Importance of a “small, low stimulus, home-like milieu” (quoting Friis, 1986; Characteristics of a good ward atmosphere; Acta Psychiatr Scand. 1986 Nov;74(5):469-73) Points 1 & 5 appear to situate their aims squarely in the realm of alternatives to a traditional approach, whereas the other items are rooted in more conventional considerations. The stated aims for the project were as follows: “to minimize elements considered to contribute to poor outcome including excessive reliance on high dose of neuroleptic medication, lack of continuity of care, mixing first episode and chronic patients and reliance on hospital care.” “to provide ‘need-adapted treatment’ (Alanen et al., 1991) on a large scale for all first episode psychosis patients” in Sweden during a one year period.” Six guiding principles describe the projcct’s foundations in vulnerability-stress theory (citing Zubin & Spring, 1977 and Ciompi 1994): i. Intervention without delay by the Parachute team, preferably in the patient’s home, after the first contact with the clinic; ii. Initial structuring crisis intervention, including coherence of professional attitudes and staff continuity. According to the patient’s needs….often supplemented with cognitive methods (Fowler et al., 1997) iii. Immediate and recurrent family meetings together with the patient, trying to understand the strains and resources of the family and to provide a common understanding of the psychotic reaction in light of the vulnerability-stress view. Family focus includes psychological support at different stages of the illness and, when needed, family treatment and psychoeducation (quoting Falloon 1985 and Lehtinen 1993). Overriding aim is to provide a realistic hope for those involved and, as far as possible, a concordance of aims and strategies of the treatment. iv. Accessibility to a stable specialized treatment team during a period of 5 years. v. See medication use below vi. Access to a small-scale, homelike, low-stimulus overnight care when the care that can be offered in the patient’s home proves insufficient or negative. Crisis home is preferably situated outside a hospital, in a flat or a small apartment (max. 3-6 first episode patients). Low staffing level, including overnight. Ordinary psychiatric in-patient care is to be used only in an emergency. Organizational structure Initially, planning meetings were convened to appoint “local coordinators”, select research instruments, conduct “video and role-play training” in diagnostic assessments and symptom ratings. A project coordinator ran the central data base in Stockholm. Local coordinators (usually psychologists) were responsible for data collection & communication with central database. Continued consensus training” took place during biannual conferences (40-50 participants – presumably all staff from the various clinics), to warrant fidelity to the original aims and procedures of the study. “The degree of organizational compliance with the treatment principles was assessed through recurrent telephone interviews with the local coordinators.” 19 Swedish outpatient clinics were asked to participate, 8 in Stockholm, the rest all over the country. 7 did not succeed in developing places for overnight care. Two clinics were ultimately excluded due to poor quality of research data. The remainder encompassed a catchment area of 1.5 million people. Funding The Swedish National Board of Health and Welfare funded the local part-time coordinators for two years. No extra funding was made available for clinical services. Whenever additional resources were needed, they were obtained through “local reallocations”. Target group served, including any exclusion criteria There were no special strategies employed to shorten the “duration of untreated psychosis” in other words, no attempt was made to identify people before they actually had a first break. Inclusion critera: Living in the catchment area First time seeking help for psychotic symptoms (does this imply voluntarism?) 18-45 years old “without dominating substance abuse or a diagnosed brain disorder” (does this imply they don’t consider psychosis or sz a brain disorder?) signed informed consent to participate in research (if not they still got the same treatment!?) The total number of individuals who signed up for the study was 253. Of these, 78 (31%) dropped out during the first year; nearly half of them due to a reluctance to appear in a case register. The remainder moved from the area, had language difficulties, or listed “practical” or unknown circumstances. Drop-outs were older, and more were given diagnoses in the “non-schizophrenia” domain (i.e. delusional syndrome & brief psychosis). Enrolment took place between 1-1-96 through 12/21/97. A conventional diagnostic/descriptive terminology was used based on the SCID interview schedule, which enables researchers to make diagnoses according to DSM-IV. This was done at baseline and repeated after one, two and five years. A new diagnosis was given after 12 months. Diagnoses included: “schizophrenia, schizophreniform psychosis, schizoaffective psychosis, delusional disorder, brief psychosis, psychotic disorder NOS, affective disorder with non-congruent psychosis” and also “first episode (non-affective) psychosis” x: 41% of study participants were given a diagnosis within the “schizophrenia-syndrome”, which included “schizophreniform and schizoaffective disorder.” Types of services offered MEDICATION USE With respect to their approach to medication, the authors stated in 2002: “In addition to the well-documented beneficial effects of neuroleptic agents, devastating routine overuse has become evident not least from patient reports.” Their intention was to use the “lowest optimal doses of neuroleptic medication with an attempt to avoid neuroleptic medication during the first 1-2 weeks.” Benzodiazepines were used for anxiety and insomnia during this period. When psychotic symptoms did not abate or were perceived as painful by the patient, an initial daily dose of 0.5-1mg of haloperidol-equivalents was recommended. In reporting on the actual use of medications during the study period, the authors broke it down according to diagnoses given. Nearly one third of persons diagnosed with “schizophrenia syndrome” were taking a neuroleptic during the first week of treatment (average dose 2.8 mg haloperidol-equivalents). In other words, two thirds of study participants so diagnosed did not receive such medications in the first week, instead 60% received a benzodiazepine. (Does that mean everyone give this diagnosis was taking either a neuroleptic or a benzodiazepine during the first week?) By the end of the first year, the proportion has shifted in the opposite direction: 62% got neuroleptics, and 38% did not. 14% took no neuroleptics throughout the entire first year., and 60% received benzodiazepines s during first week, which was equal to group of individuals whose diagnosis fell within the “non-schizophrenia” domain. Additionally, 36% took either lithium or an antidepressant during year one. Study participants given diagnoses in the “non-schizophrenia” domain: 39% neuroleptics in 1st week. 31% in week 52 (half as persons with schizophrenia spectrum diagnosis) 23% got no neuroleptics in year one 60% took benzodiazepines in week one 40% took Lithium or antidepressants in year one Total sample: 65% got no neuroleptics in the first week 55% got no neuroleptics in week 52 18% got no neuroleptics at all OTHER SERVICES: Psychological treatments: An average of eight planned individual sessions took place during the first month, which came down to three by the 12th month. Unplanned sessions were not reported, and neither was the length and content of individual sessions. An average of three family meetings took place during the first month and none during month twelve. Inpatient/hospital use: In those clinics where an overnight alternative was available, 54% of study participants still used inpatient services (voluntarily?) with a mean length of stay of twelve days (compared to 68% and 30 days where no overnight respite was available). 57% of study participants used the overnight alternative, where they stayed for a mean of 42 days (There were probably a few outliers in length of stay, as the median number for hospital days was one and nine in overnight alternative). Results: “We know enough to counter the aggressive, unnuanced claims from the pharmaceutical industry that every FEP patient needs immediate antipsychotic drug therapy (2006).” The participants in the Parachute Project were compared with a historical and prospective group, the latter receiving standard services concurrently with the experimental group (the authors assert that such services were often better than “standard” since there was some access to overnight support, psychotherapy, and family sessions.) Three-year outcome showed that the direct costs were lower for PARACHUTE group largely due to fewer days spent in the hospital (compared to the historical group only) “In spite of low medication, the treatment results are good” “Large-scale application of need adapted treatment is feasible” but not significantly cheaper than enhanced outpatient care”. Medication doses in the Parachute group were lower than in prospective (2mg vs 4 mg), but not statistically significant. They also reported a low use of depot medication 3/24 = 9% in three years. 58% were on antipsychotic meds after three years (compared to 76% in the prospective and 63% in the historical groups). More “positive symptoms” (39%) compared to the prospective group (29%) after 3 years (which might suggest that people learn to live with such “symptoms” while taking less neuroleptic medication). Parachute subjects scored lower on “negative symptoms” (38% v. 50% n.s.). Hospitalizations/overnight stays Parachute participants spent significantly fewer days in hosp or overnight stay compared to the prospective group. 34 hosp days + 66 overnights = 100 total nights vs. 160 hosp days +52 overnights = 212 total for the prospective group and 101 hospital + 59 overnights = 160 nights for the historical group. (Difference between Parachute and Prospective groups significant for both overnight stays and hospital days.) Participant satisfaction with services. 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Another project by