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1 2 23 3 4 5 Family Intervention in First Episode 6 7 William R McFarlane 8 9 10 11 12 13 14 15 16 17 Introduction placeable and remarkably effective contributors 18 to the treatment and rehabilitation process. Among all medical disorders, is 19 one of the most costly and most severe, creating 20 nearly continuous disability for a lifetime in the Mutually reinforcing biological and 21 social processes 22 great majority of cases. It is a devastating disorder 23 for families, who often assume major care-taking The prodromal and early psychosis 24 and psychological burdens secondary to the func- phases 25 tional deficits that this and other psychotic disor- Studies of first episode psychosis, document that 26 ders impose. The functional disability that is the average time between onset of psychotic 27 particularly devastating in schizophrenia appears symptoms and the initiation of treatment is one 28 to be secondary to the negative symptoms that to two years, depending on the study.1 Frequency 29 usually begin prior to the psychotic symptoms, and severity of recurrence may be increased by 30 often persist despite treatment and usually get exposure to periods of untreated psychosis and 31 worse with time and with each subsequent decreased by effective treatment.2,3 The earlier 32 episode. These deficit symptoms are often the one provides treatment, the more effective is that 33 most burdensome for family members, because treatment, the better the prognosis, and the less 34 they usually do not identify them as part of the the functional deficit, perhaps preventing the per- 35 disorder but they nevertheless find themselves sistent residual deficits common in these disor- 36 supporting the affected member to compensate ders. Early identification of those with active 37 for those deficits. The reactions many family symptoms allows initiation of state-of-the-art treat- 38 members have to the emerging symptoms often ment that can continue for as long as the person 39 become one of the stressors that have a negative remains vulnerable. 40 influence on those symptoms, longer-term out- While the scientific evidence is increasingly 41 comes and degree of disability. This chapter strong that the major psychotic disorders are 42 describes the interaction of family and biological based in genetic or developmental defects involv- 43 processes and a powerful treatment method that ing brain function, there is also abundant evid- 44 has been shown to reverse these negative ence that the final development of psychotic 45 processes and help family members become irre- symptoms is the result of psychosocial stress. The 23_Psychosis_154 28/5/04 12:48 pm Page 216

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1 stress-diathesis or stress-vulnerability model pro- meta-analysis, Bebbington and Kuipers cite the 2 vides a widely accepted, empirically supported overwhelming evidence from 25 studies repre- 3 and useful framework for describing the relation- senting 1346 patients in 12 different countries for 4 ships among provoking agents (stressors), vulner- a predictive relationship between high levels of 5 ability and symptom formation (diathesis), and expressed emotion and relapse of schizophrenia 6 outcome.4 Thus, a genetically or developmentally and .6 Inclusive reciprocal models 7 vulnerable person with a low tolerance for stress have been proposed to increase the accuracy of 8 may experience a first episode of psychotic illness the construct.7 For example, Strachan et al.,8 and 9 following exposure to excessive internally or Goldstein et al.,9 found that expressed emotion 10 externally generated stimulation. This principle among key relatives is a reflection of transactional 11 underlies the Biosocial Hypothesis (see box). processes between the patient and family, sup- 12 porting the conclusion that family functioning is 13 affected by aspects of the illness, as well as the Major psychotic disorders are the result of 14 converse. the continual interaction of specific biologic 15 Attribution—relatives’ beliefs about the causes disorders of the brain with specific 16 psychosocial and other environmental of illness-related behavior—is also associated with 17 factors. expressed emotion. Relatives described as critical 18 or hostile misperceive the patient as somehow 19 responsible for unpleasant, symptomatic behav- 20 Psychosocial factors are usually the proximal ior, whereas more accepting relatives see identical 21 causes of relapse in established cases and in the behaviors as characteristic of the illness itself.10 22 initial psychotic episode. The treatment described This is an especially acute risk in the prodromal 23 here is based on a simple and now plausible phase and in the first episode, during which 24 theory: the first episode occurs in a biologically symptoms and deficits often develop slowly, 25 vulnerable individual in an already evolving dis- appearing to reflect personality or behavioral 26 order in which the types of proximal causes of the faults. An individual who is cognitively impaired, 27 first episode are the same as those in later denying illness, paranoid, angry, hostile, affec- 28 relapses. Those include major stresses imposed by tively labile, socially withdrawn or anhedonic will 29 role transitions and other life events, social isola- be much less available to receive the support 30 tion, family expressed emotion, conflict and exas- needed to function at an optimal level.11 If family 31 peration, separation from family of origin, and members confronted by such symptoms in a loved 32 stigma. A review of pertinent literature supports one have little formal knowledge of the illness, 33 this biosocial causal theory, yielding an interac- they are likely to respond with increased involve- 34 tive, feedback-based model for the final stages of ment, emotional intensity or criticism. One of the 35 onset, as compared to a simpler linear-causal few prospectively validated predictors of the onset 36 model. Therefore, treatments that prevent of schizophrenic psychosis in vulnerable adoles- 37 relapse by counteracting those proximal causes cents is negative affective style, an analog of EE.12 38 can ameliorate the first episode, prevent sub- 39 sequent relapse, and reduce the vulnerability to Stigma 40 developing deficit symptoms. Stigma is often associated with withdrawal of 41 social support, demoralization, and loss of self- 42 Expressed emotion (EE) esteem, and can have far-reaching effects on daily 43 High levels of criticism and emotional over- functioning, particularly at work or school. Link 44 involvement are strongly predictive of exacerba- and colleagues observed that stigma had a strong 45 tion or relapse of symptoms.5 In an extensive continuing negative impact on well-being, even 23_Psychosis_154 28/5/04 12:48 pm Page 217

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1 though proper diagnoses and treatment toward treatment in general, schizophrenic 2 improved symptoms and levels of functioning relapse, and quality of life.20 Availability of social 3 over time.13 Stigma affects the family as well. support to the family is associated with subjective 4 Effects include withdrawal and isolation on the burden experienced by relatives.21 Brown et al. 5 part of family members, which in turn are associ- showed that 90% of the families with high 6 ated with a decrease in social network size and expressed emotion were small in size and socially 7 emotional support, increased burden, diminished isolated.5 Social network size decreases with 8 quality of life, and exacerbations of medical disor- number of episodes, is lower than normal prior to 9 ders.14 Self-imposed stigma tends to reduce the onset and decreases during the first episode.22 10 likelihood that early signs will be addressed and 11 treatment sought and accepted, especially during Life events prior to onset 12 the first episode.15 Disruption of social networks leads to destabiliza- 13 tion and relapse. Steinberg and Durrell found 14 Communication deviance that the vast majority (nearly 80%) of first 15 Communication deviance, a measure of distracted episodes in an Australian sample occurred after 16 or vague conversational style, has been consis- separation from home and family—on entering 17 tently associated with schizophrenia. It, along with college or the military.23 Life events have been 18 family negative affective style, are the two predic- shown to be associated with, or predictive of, 19 tive factors in the onset of schizophrenic psy- relapse in schizophrenia.24 For young adults and 20 chosis in disturbed, but non-psychotic, adolescents the most potent events tend to be 21 adolescents.12 Studies have demonstrated that those that involve loss of supportive social ties, 22 communication deviance is correlated with cogni- especially separation from, or death of, family 23 tive dysfunction in relatives, which is of the same members, romantic/marital losses for women, 24 type as in patients with schizophrenia, but of and occupational disruptions for men. 25 lower severity.16 This suggests that some family 26 members have difficulty holding a focus of atten- Effects on the family of psychosis 27 tion, with important implications for treatment Because there is so much evidence that family 28 design. A child with subtle cognitive deficiencies members of patients with established psychotic 29 may learn to converse in a communication milieu disorders share subclinical forms of similar 30 that is less able to compensate and correct. These deficits and abnormalities, treatment for early 31 difficulties are not personality defects; rather they stages of psychosis must be designed to compen- 32 are manifestations of the schizophrenic diathesis sate for some of those difficulties. Those deficits 33 playing itself out in the interpersonal as well as in lead to diminished coping ability, which is 34 the neurological domain. required in abundance in order to provide a ther- 35 apeutic influence on the affected family member. 36 Social isolation Psychotic disorders exact an enormous toll on 37 Research on several severe and chronic illnesses family members, in , anger, confusion, 38 indicates that access to social contact and support stigma, rejection, and exacerbation of medical 39 prevents the deterioration of patients and disorders.14 Most families undergo organizational 40 improves the course of their illnesses.17 Family changes, including alienation of siblings, exacer- 41 members of the most severely ill patients are iso- bation or initiation of marital conflict, severe dis- 42 lated, preoccupied with, and burdened by, the agreement regarding support versus behavior 43 patient. Social support buffers the impact of control, even divorce. Almost every family under- 44 adverse life events,18 and is one of the key factors goes a degree of demoralization and self-blame, 45 predicting medication compliance,19 behavior which may be inadvertently reinforced by some 23_Psychosis_154 28/5/04 12:48 pm Page 218

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1 clinicians. During the prodromal phase, family annual relapse rates for medicated, non-institu- 2 members are mystified by the often dramatic tionalized patients of as much as 40%, using a 3 emotional, cognitive, and behavior changes that variety of educational, supportive, and behavioral 4 they are seeing, and react in a wide variety of techniques.25,26 The average relapse rates in these 5 ways, from anger to denial to profound anxiety studies are 40% for individual treatment without 6 and worry. The result is a slow-moving crisis that family involvement, and under 15% for family 7 cannot be guided or resolved from within the approaches. This effect equals the reduction in 8 family. relapse in medicated versus unmedicated patients 9 in most drug maintenance studies. In over 20 con- 10 A model of reciprocal causation trolled clinical trials, the track record for sympto- 11 For the genetically or developmentally vulner- matic, relapse, and functional superiority of 12 able person, subclinical cognitive deficits, effects family over non-family based routine treatment is 13 of the psychosis on the family, family expressed clear: it is effective, in nearly any country, popu- 14 emotion and exasperation, and characteristic lation, socioeconomic environment, class, gender 15 coping styles combine to contribute to illness- or ethnic group, when applied in schizophrenia.27 16 generated stresses that induce a spiraling and Psychoeducational multiple family groups 17 deteriorating process that ends in a major psy- (PMFGs) reduce relapse to even lower frequen- 18 chosis. The proximal causes described above are cies and enhance vocational and social rehabilita- 19 potential targets for psychosocial treatment. The tion outcomes, especially regarding competitive 20 psychoeducational multifamily group model employment.28,29 21 assumes that these stress factors can be coun- In a study in which 69% of the cases were 22 tered or ameliorated by family and social- having their first episode, there were no relapses 23 network intervention. among the first episode group in the cohort that 24 received family crisis therapy during the six 25 Outcomes of family intervention months of the trial, significantly lower than in the 26 cohort without family involvement.30 A long-term 27 Established and first episode cases follow-up disclosed remarkably good outcomes in 28 The family psychoeducational model defines the period from three to six years after inter- 29 schizophrenia as a brain disorder sensitive to the vention. In two studies of differential effects in 30 social environment. Thus, this form of treatment schizophrenia of single- (SFT) and multi-family 31 is bimodal, influencing both the disease, group (MFG) forms of the same psychoeduca- 32 through medication, and the social environ- tional treatment method, better outcomes were 33 ment, through techniques that deliberately observed for multifamily groups among those 34 reduce stimulation, rate of change, and com- having their first hospitalization.28,31 35 plexity to tolerable levels. The approach achieves 36 these goals by providing education, training, and Psychoeducational multi-family group 37 support to family members and others, who in treatment 38 turn provide support, protection, and guidance 39 to the patient. First episode psychosis 40 The efficacy of family intervention, variously The psychoeducation multi-family group treat- 41 termed family ‘psychoeducation’, ‘family behav- ment model described here is designed to assist 42 ioral management’, or ‘family work’ (but not families directly in coping with major burdens 43 ) is remarkable. Outcome studies and reducing stresses during the prodromal and 44 by Goldstein, Leff, Falloon, Hogarty, Tarrier, psychotic phases of these disorders. This 45 Schooler, and Randolph report a reduction in approach: 23_Psychosis_154 28/5/04 12:48 pm Page 219

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1 1. allays anxiety and exasperation Engagement 2 2. replaces confusion with knowledge, direct Contact with the family and with the newly admit- 3 guidance, problem solving and coping skill ted individual is initiated within 48 hours of hos- 4 training pital admission or the onset of psychosis. The aim 5 3. reverses social withdrawal and rejection by par- is to establish rapport and to gain consent to 6 ticipation in a multi-family group that counter- include the family in the ongoing treatment 7 acts stigma and demoralization process. The clinician emphasizes that the goal is 8 4. reduces anger by providing a more scientific to collaborate with the family in helping their rel- 9 and socially acceptable explanation for symp- ative recover and avoid further deterioration or 10 toms and functional disability. relapse. The family is asked to join with the clini- 11 In short, it relieves the burdens of coping while cian in establishing a working alliance or partner- 12 more fully engaging the family in the treatment ship, the purpose of which is to provide the best 13 and rehabilitation process, and compensating— post-hospital environment for recovery. Initial 14 non-pejoratively—for the expected subclinical contacts with the patient are deliberately brief 15 symptoms that many relatives can be expected to and non-stressful. The young person is included 16 manifest. The goal of intervention is to provide in at least one of the joining sessions and is 17 optimal treatment as early as possible for those excluded from at least one. If the patient is 18 who are experiencing a first episode of psychosis. actively psychotic, they are not included in these 19 These groups address expressed emotion, sessions, but only engaged in a patient-clinician 20 social isolation, stigmatization, and burden format. This phase is typically three to seven 21 directly by education, training, and modeling. single-family sessions for the multiple family 22 Much of the effectiveness of the groups results group version, but more may be required until a 23 from increasing the size and density of the social sufficient number of families is engaged. 24 network, by reducing the experience of being 25 Education stigmatized, by providing a forum for mutual aid, 26 Once the family is engaged and while the patient and by providing an opportunity to hear similar 27 is still being stabilized, the family is invited to a experiences and find workable solutions. 28 workshop conducted by the clinicians who will Five to seven families meet with two clinicians 29 lead the group. These 6 hour sessions are con- on a biweekly basis for one to three years. Unless 30 ducted in a formal, classroom-like atmosphere, psychotic, the patients also attend the group, 31 involving five or six cases. Biological, psychologi- although the decision to attend is based upon the 32 cal, and social information about psychotic disor- patient’s mental status and susceptibility to stimu- 33 ders and their management is presented with lation. Each session lasts for 1.5 to 2 hours. The 34 videotapes, slide presentations, lectures, discus- multi-family group intervention is described 35 sion, and question-and-answer periods. Informa- briefly here and in detail elsewhere.32 36 tion about how clinicians, patient, and family will The intervention model consists of four treat- 37 work together is presented. The families are intro- ment stages roughly corresponding to the phases 38 duced to guidelines for management of the dis- of an episode of schizophrenia, from the acute 39 order and the underlying vulnerability to stress phase through the recuperative and rehabilita- 40 and information overload. Patients attend these tion phases. These stages are: 41 workshops if clinically stable, willing, interested, 42 1. Engagement and seemingly able to tolerate the social and 43 2. Education informational stress. 44 3. Re-entry The clinicians tailor education and informa- 45 4. Social and vocational rehabilitation.33 tion-sharing to each patient and family’s unique 23_Psychosis_154 28/5/04 12:48 pm Page 220

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1 and evolving experience, as assessed during the be, it is part of the person’s physical personhood, 2 engagement process. Psychosis is defined as a with both advantages and disadvantages. Families 3 reversible, treatable condition, like diabetes. The are explicitly urged not to blame themselves for 4 genetic or developmental vulnerability is pre- this vulnerability. 5 sented as an unusual sensitivity to sensory stimula- Families receive rather specific guidelines to use 6 tion, prolonged stress and strenuous demands, in relating to, and attempting to help, their relative 7 rapid change, complexity, social disruption, illicit with the illness. Table 23.1 presents the guidelines 8 drugs and alcohol, and negative emotional that are specific to the early phases of psychosis. 9 experience. As for blame and assigning fault, the 10 clinicians take an important position: neither the Re-entry 11 patient nor the family caused the sensitivity. Following the workshop, the families and patients 12 Whatever the underlying biological cause might meet with the clinicians every 2 weeks in the mul- 13 14 15 Table 23.1 Guidelines for families. Ways to hasten recovery and to prevent a recurrence 16 Believe in your power to affect the outcome. You can 17 18 Make forward steps cautiously, one step at a time 19 Go slowly. Allow time for recovery. Recovery takes time. Rest is important. Things will get better in 20 their own time. Build yourself up for the next life steps. Anticipate life stresses. 21 Consider using medication to protect your future 22 A little goes a long way. The medication is working and is necessary even if you feel fine. Work with 23 your doctor to find the right medication and the right dose. Have patience, it takes time. Take 24 medications as they are prescribed. Take only medications that are prescribed. 25 Try to reduce your responsibilities and stresses, at least for the next 6 months or so 26 Take it easy. Use a personal yardstick. Compare this month to last month rather than last year or 27 next year. 28 Use the symptoms as indicators 29 If they reappear, slow down, simplify and look for support and help, quickly. Learn and use your early warning signs and changes in symptoms. Consult with your family clinician or psychiatrist. 30 31 Create a Protective Environment 32 33 Keep it cool 34 Enthusiasm is normal. Tone it down. Disagreement is normal. Tone it down too. 35 Give each other space 36 Time out is important for everyone. It’s okay to reach out. It’s okay to say ‘no’. 37 Set limits 38 Everyone needs to know what the rules are. A few good rules keep things clear. 39 Ignore what you can’t change 40 Let some things slide. Don’t ignore violence or concerns about suicide. 41 Keep it simple Say what you have to say clearly, calmly, and positively. 42 Carry on business as usual 43 Re-establish family routines as quickly as possible. Stay in touch with family and friends. 44 Solve problems step-by-step 45 23_Psychosis_154 28/5/04 12:48 pm Page 221

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1 tiple family group format. The goal of this stage Conclusions 2 of treatment is to develop and implement strat- 3 egies to cope with the vicissitudes of a person Family psychoeducation and multi-family groups 4 recovering from acute psychosis. Treatment com- have shown remarkable outcomes in first episode 5 pliance, stress reduction, buffering and avoiding cases in several studies and multi-family groups 6 life events, avoiding street drugs and/or alcohol, appear to have a specific efficacy in earlier phases. 7 lowering of expectations during the period of Empirical evidence and our experience suggests 8 negative symptoms, and a temporary increase in strongly that family-oriented, supportive and psy- 9 tolerance for these symptoms are major topics. choeducational treatment is acceptable to families 10 Two special techniques are introduced to support and in clinical trials appears to meet many of their 11 to the families’ efforts to follow the guidelines needs. There is theoretical support for the likely 12 introduced in the earlier workshop: formal efficacy of these methods, with their strategy of 13 problem solving and communications skills train- stress-avoidance, protection, and buffering, while 14 ing.34 the multi-family group format adds an inherent 15 element of social support and network expansion. 16 Social and vocational rehabilitation 17 Approximately one year following initiation of 18 treatment most patients begin to show signs of References 19 returning to spontaneity and active engagement 1. Loebel AD, Lieberman JA, Alvir MJ, et al. Duration 20 with those around them. Negative symptoms are of psychosis and outcome in first-episode schizo- 21 diminishing and the patient can now be chal- phrenia. Am J Psychiatry 1992; 149:1183–8. 22 lenged more intensively. The focus of this phase 2. Lieberman JA, Koreen AR, Chakos M, et al. Factors 23 deals with his/her relationship to the wider influencing treatment response and outcome of 24 world, addressing specifically three areas of func- first-episode schizophrenia: implications for under- 25 tioning in which there are commonly deficits: standing the pathophysiology of schizophrenia. J 26 social skills, academic challenges and the ability Clin Psychiatry 1996; 57:5–9. 3. Haas GL, Garratt LS, Sweeney JA. Delay to first 27 to get and maintain employment. antipsychotic medication in schizophrenia: Impact 28 Each family receives education that takes into on symptomatology and clinical course of illness. J 29 account the specific features of the symptom con- Psychiatr Res 1998; 32:151–9. 30 stellation of their ill family member during the 4. Zubin J, Steinhauer SR, Condray R. Vulnerability 31 initial engagement process; this continues during to relapse in schizophrenia. Br J Psychiatry 1992; 32 the multifamily group process as well. The pace of 161(suppl 18):13–18. 33 reentry is guided by clinical status, the subsidence 5. Brown GW, Birley JLT, Wing JK. Influence of 34 of negative symptoms, and the continued remis- family life on the course of schizophrenic disor- 35 sion of positive symptoms. Careful, forward ders: A replication. Br J Psychiatry 1972; 36 progress is the watchword. In particular, full use is 121:241–58. 37 made of precipitants as a guide to situations and 6. Bebbington P, Kuipers L. The predictive utility of 38 factors that may be destabilizing for the specific expressed emotion in schizophrenia: an aggregate analysis. Psychol Med 1994; 24:707–18. 39 individual with a psychosis or prodromal symp- 7. Kuipers L, Bebbington P. Expressed emotion 40 toms and signs. Temporarily reducing expecta- research in schizophrenia: Theoretical and clinical 41 tions might be suggested around those specific implications. Psychol Med 1988; 18:893–909. 42 areas. The approach emphasizes fostering patient- 8. Strachan, Feingold D, Goldstein M, et al. Is 43 to-patient relationships and friendships. expressed emotion an index of a transactional 44 process? II. Patient’s coping style. Fam Process 45 1989; 28:169–81. 23_Psychosis_154 28/5/04 12:48 pm Page 222

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