“Families and First Break: An Evolving Role” – Ron Bassman, Karyn Baker & Connie Packard

For printer friendly document complete with footnotes (not included in this post) click here.

ABSTRACT
The changing role of the family and how the family unit may help or harm a disturbed and/or disturbing member is examined. The authors use their personal experiences as mental health professionals, user/survivors and family members to inform their critique. A brief history of family involvement – how the family has been perceived and worked with by mental health professionals – is followed by a description of present day practices. The paper concludes with speculation about alternatives in which quality of life for all of the family members may be more possible.

INTRODUCTION
The role of nuclear families in helping or hindering the recovery process is the canvas upon which we will examine what has been done, what is being done now, and what might be done to support and nurture the untapped potential of this primary resource.

Just as the construct “mental illness” invokes considerable debate and has generated numerous hypotheses, the role of families in the aetiology of mental illness and the estimated influence families have in their relatives’ recovery continues to be a controversial issue. Activism and advocacy efforts by families and those who have been diagnosed and treated for major mental illness have adopted antagonistic positions in regard to the causation and the nature of the condition, decisions about treatment, risk/safety, rights and forced treatment. What is consistent and beyond question is how unprepared all members of the family are for the confusion, fear and emotional pain that awaits them when one of them elects to exit or falls off the acceptable beaten path he or she is expected to follow.

This paper is a collaborative effort that is informed by the lived expertise of three individuals who draw from their personal experience as psychiatric survivors, family members and from their work as mental health professionals. The writers, who are friends and colleagues, have worked together for more than five years trying to improve on the ineffective treatments and supports that are available for individuals and families confronting extreme emotional states.

Ron Bassman: After I was diagnosed and hospitalized for schizophrenia at ages 22 and 25, I earned my doctorate and have worked as a licensed psychologist for more than 30 years. During that time my experience has included psychotherapy practice, directing a comprehensive community mental health center, activism, university teaching and the publication of a book describing my experience of the mental health system from both sides of the locked door. I bring to this paper mixed and blended identity roles, psychiatric survivor, family member and psychologist.

The last among many difficult issues I needed to resolve in order to grow and move on with my life was reconciliation with my family. I had to work through the anger and betrayal I felt, and move into a place where I could understand the confusion of my mother, father and brother. They too, experienced pain, confusion and their own betrayal by the “medical experts” on whom they relied on to make me “well.” My family was seduced by mis-information, and as a result I was shocked with electricity and subjected to 40 insulin comas. My introduction to these treatments was what my mother told me during one of her visits. Too cheerily she said, “Good news, the doctors gave you a complete physical, blood tests, everything. . . you’re in perfect health.” Suddenly hopeful, I held my breath and waited for her to tell me when I would be released. Instead, she said, “They’re going to give you a new treatment that will make you better and when they finish, you’ll come home.” Little did we know that those new treatments would result in the loss of a significant part of my memory and take me over two years to begin functioning again.

Now, I know that their support – their expectation that I would recover – was the foundation that would enable me to persevere in my struggle to master the developmental task of establishing my identity as an independent adult. Today I can look back and empathize with the anguish I saw in my mother’s eyes as she helplessly faced my angry accusatory outbursts and pleas to get me out of that place. I am fortunate that we were later able to reach an understanding and a forgiving thankfulness for my having defied the odds. I know too well how many families have been destroyed by a mental health service system that alienates family members and falls far short of accomplishing what should be its goals. I know we can do better; I try to do my part.

Karyn Baker: Ten years ago, I was approached by a colleague to assist with the start up of a family mental health program. I was extremely reluctant as my work in mental health for the prior 15 years had been primarily as a community developer, a consultant and mental health planner and I considered myself an ally to the consumer/survivor movement. My experience with mental health family programs had been that they were very medical model and quite antagonistic to the views of the consumer/survivor movement.

What I quickly learned after agreeing to a 3 month contract is that families as a whole were not antagonistic toward their relative but rather they cared deeply about their relative’s distress and just wanted to help end their pain. I also learned that families were quite vulnerable and naive about the information that they received from the medical community and from other more seasoned family members. The other important lesson I learned from the families is that they too were more often than not dissatisfied about the care that their relatives were receiving. Instead of viewing families as foes to the consumer/survivor movement, I began to see them as potentially strong and valuable allies. Families needed an opportunity to learn alternative viewpoints about mental health distress and what helps and hinders recovery. A three month contract turned into over ten years of dedicating myself to a program that would embrace and support the consumer/survivor movement as well as develop creative, value-based programming that would give families the attitudes and skills required to support their relative in their recovery.

The Family Outreach and Response Program in Toronto, Canada, has grown into a dynamic program staffed by professionals who are both family members and survivors. Our program works with a diverse range of families and specializes in supporting families whose relatives are experiencing an early psychosis.

My passion for family work was also enhanced by my personal experience as a family member. I had a long term relationship with a person who had been diagnosed by the mental health system and also had substance use issues. I also support a son who is recovering from a mental health issue.

Connie Packard: I am the mother of a son who was diagnosed with schizophrenia. My son and I have for many years experienced separately and together a wide range of treatments.?My desire to work for systemic change in the delivery of mental health services arose initially and directly from my personal experience in trying to find effective treatment for my son, and help for the rest of our family in understanding how to deal with the many serious challenges and stresses we were facing. Over the years, I found no help for my son or for our family to address the situation holistically. There was an absence of effective help even if you had the resources to seek out the “best” available services. Our one positive experience occurred at an unconventional 5 day program outside of the usual models of care. There my son made amazing progress, I was able to change my attitude and approach, and we both discovered hope in the possibility of recovery. Unfortunately, it was not possible to continue this alternative approach for the longer term, but it certainly contributed to my motivation to work for alternatives.

My professional experience includes 15 years of work as a licensed social worker and family therapist in a community mental health center. I am a founder and long time Board member of Windhorse Associates in Northampton, Massachusetts. Windhorse is one of the earliest recovery oriented models. Its approach is holistic, is based on keeping people in the community, works with families, and has a strong peer component and training program. I am the principle author of The Windhorse Guide for Families which is the result of my experience as a family member dealing with the mental health system and my training and experience as a family therapist.

Although the authors’ primary, secondary and tertiary identification in the above categories flip-flopped and merged at times, they were strongly aligned in their attempt to integrate the often polarizing positions taken by psychiatric survivors and family members with regard to what values, support and treatment were instrumental to the development, growth and community integration of all family members.
In our attempts to communicate to readers who possess wide-ranging knowledge, beliefs and experience, we struggled with how to use language that could be understood easily while not being stigmatizing or reflective of an uncritical acceptance of the medical model’s reductionist biological model of mental illness. Terms such as mental illness, identified patient, client, consumer, survivor, recovery and diagnoses have been sources of intense disagreement among different interest groups. At times we found viable substitutes that could be used which did not sacrifice clarity, and at other times we chose to use medical language to avoid confusion or to minimize dissonance for those educated within the mental health professions.

Because no family is immune from encountering what we have come to call major mental illness, for our purposes it was necessary to narrow the scope of this paper. Given the diversity of families within and between cultures, we chose to concentrate on families who are motivated to participate in some form of service and where the focal person (identified in the family therapy literature as the “identified patient”) does not resist participating. Although we would expect to find a substantial group of presenting families with a history of abuse, and recognize an increasing focus in the field on the role of abuse and trauma, we have chosen not to include these families in our discussion in order to identify what might be effective with one segment of the population. Our starting place for families involved in first break assumes a lack of immanent dangerousness on the part of the focal person or other family members. Excluded from this discussion are families where the existence of, or potential for abuse mandates protecting vulnerable family members. We also recognize that even with careful and detailed family assessment, instances of abuse and the potential for danger can remain hidden to the outside observer only to be discovered later.

Our goal is to identify concepts and principles that may be common to, and potentially helpful to a wide range of families. The discussion and recommendations included here are based primarily on work in North America – using examples of current work in Canada and the United States. Respecting and working with families in a collaborative manner is relatively new and challenges the shibboleths embedded in past models. Our goal is to encourage the development of creative models that are respectful of complexity and diversity.

In our attempt to mediate the polarizing language that names people, conditions and interventions, we use the following language and ground for this paper:

Families encountering “first break” or “early psychosis” are the focus.
The term “recovery,” as used in this paper, is considered to include more than a return to a prior level of functioning such as recovering from an illness or the healing of a broken bone. Recovery here will include the development, growth and transformation of an individual from being a patient/client into a citizen who is capable of fully participating in his or her community of choice.

Recovery is a genuine possibility for the “focal person,” the individual family members and the family system itself.

HISTORICAL PERSPECTIVE
A potpourri of cultural, economic and political/governmental factors propelled the large over-crowded institutions into downsizing. Confining persons who are experiencing extreme emotional states to institutions had been the primary and often only choice available to people and their families. The institutions have varied from the small “moral treatment” model developed by Quakers to massive psychiatric facilities crowding thousands together.1

During the last three decades of the 20th century, families and consumers/ survivors/ex-patients (c/s/x)2 began to assert themselves and demand changes. Although these groups had several common advocacy causes, the hot button issues of rights, self-determination and tolerance for risk/safety continue as barriers to meaningful collaborative work. Although family advocacy and c/s/x advocacy were often adversarial, much of the progress in the quality of life for c/s/x and their families can be attributed to the independent activism of both groups.

Today, much credible research has demonstrated significant recovery rates for “psychotic disorders.” In the beginning of the 21st century we saw the love affair with psychiatric drugs begin to unravel and give rise to questions of iatrogenic effects and its negative impact upon long term recovery outcomes. But like a bad poker player who is fully invested in a bad hand, the mainstream medical community persists in throwing more money into the pot rather than folding losing cards and looking for a new better set of cards (services) to invest in.

Currently, there is a heightened awareness of the influence of family, friends and community upon a person’s recovery. Not too long ago, the concept of the schizophrenogenic mother and the distant uninvolved or absent father were considered to be fertile ground for a developing child’s entrance into schizophrenia. Theorists and practitioners of family therapy, after many starts and stops, have moved away from overly simple explanations to a greater respect for families and their complexity. Abandoned is the automatic attribution of bad parenting, but caution must be exercised not to go to the other extreme – that the family is absolved from all responsibility.

Historically, families have been implicitly or explicitly blamed for the mental illness of their relative. Before World War II, in the United States, families were routinely advised to abandon their mentally ill member to the asylum, to give up hope, to cut off ties and to mourn their loss. Since then, dominant beliefs and practices in the mental health system have bounced between the extremes of either blaming families or exonerating them (by blaming genetics and/or chemical imbalances in the brain). Family members have been pushed and pulled, blamed by professionals or let off the hook, but rarely, if ever, offered services that addressed the complexity and uniqueness of the individual, nor were they effective in maximizing a specific individual’s chances for personal growth and recovery. Mechanistic, over-simplified cause and effect theories have been over-generalized, shown to be relatively useless and often placed another obstacle in the path of the individual’s aspirations to be a fully integrated member of his or her community of choice. Although it has been hypthothesized that certain factors such as physical and emotional abuse, and/or genetic pre-dispositions cause major mental illnesses, much mystery remains – including the heated controversy over whether we are indeed dealing with an illness or disease.

Theories that guided family therapy in the early years were split on the subject of schizophrenia. Some theorists held that the symptoms of schizophrenia could be extinguished if the parents and other family members learned better ways to communicate and be with each other. Other professionals recognized the unfair, unfounded and pernicious nature of placing the entire responsibility on families and began developing other approaches. One such approach was “family psychoeducation.” The basics involve components of education, communication and problem-solving techniques. In this approach, schizophrenia is considered to be an illness like any other.
What has come to be known as family psychoeducation is believed to have originated in the late 1970s. The models of family psychoeducation that attained dominance were based on an over-riding foundational principle – that extreme mental illnesses were biochemical disorders. Therefore, the need for medication was an unassailable tenet of the educational component. Giving a scientific name and an attribution of cause to the confounding disordered condition affecting their family member provided some relief and reassurance. A degree of freedom from blame enhanced the appeal. With this paradigm, family members were taught to focus their efforts on learning how to cope, live with, and best manage their relative’s symptoms.

In the United States, the changing emphasis on the role of families coincided with the emergence of the organized family movement, the National Alliance for the Mental Ill (NAMI). During the next four decades NAMI became a powerful advocacy agent that influenced government policies in regard to commitment laws, institutions and research – especially pharmaceutical research.

Approximately a decade earlier, consumers, psychiatric survivors and ex-patients had also started organizing and critically examining their elected roles as “mental patients.” They began to fight for their civil rights and to re-define and claim ownership of their experience. An emerging emphasis on the possibility of recovery was supported by their own first person narratives as well as by longitudinal research studies of recovery. The NAMI and U.S. government endorsed model of family education adheres to an illness-based model within which there is little or no possibility for a full recovery for the focal person. Such an educational model coaches families to evaluate what are realistic hopes and goals and in so doing arbitrarily narrows the range of possibilities the family may aspire to reach. The emphasis on having family members face their grief and pull back on their once strongly held plans and dreams leaves maintenance and stabilization as the dominant consideration. Understandably, the c/s/x movement and NAMI are at odds, with the result that there has been no united effort by the two main stakeholder groups to overcome the lethargy and stagnation of the mental health system.

Tension between organized family groups and c/s/x groups center primarily on several key decisional issues involving self-determination on the part of the focal person, and his or her potential negative interaction with other family members and the community at large.

The questions that follow have proved to be exceedingly difficult:

  • Can the focal person continue to live and be supported within the family home rather than being placed in an in-patient facility voluntarily or involuntarily?
  • Who chooses outside services?
  • Is psychiatric medication necessary – who and how are decisions and monitoring made?
  • Will the focal person’s choice to refuse (decline) a specific treatment or service be honored or will he or she be forced to comply?
  • Will attitudes and beliefs about the extent of possible recovery determine how much risk can be accepted or tolerated by the family unit?
  • When will threat of harm to self or others come into play and who takes charge of determining risk limits?

    To achieve the best possible outcome for individuals and their families is a laudable goal; however, its realization is still a fuzzy future vision. Arthur Kleiman, in the August 22, 2009 edition of the Lancet titled Global Mental Health: A Failure of Humanity3 stated, “Mental health professionals themselves and family members, moreover have repeatedly been shown to be the most effective and efficient transmitters of stigma.”

    First break is where this destructive labeling and moral judgment must be prevented from laying down roots. By looking at how families and their focal members respond to first break crises, we may develop some insight as to how we can create more humane, effective services and supports.

    THE EXPERIENCE OF FIRST BREAK

    One of the authors describes his first break experience:

    They rode in silence to Fair Oaks Hospital, parents aching for the recovery of a broken child. One powerful certainty bridged their differences – their son would never be abandoned. Without knowing who was enemy or ally, a deadly threat propelled them on their mission.

    Determined, unyielding tenacity was their strength. She was anxious, frightened, but above all, angry and intolerant of her own ignorance. He was unexpressive, appreciative of the control driving afforded. The car was his domain, the children hers. The unity mobilized by crisis muted years of quarreling. She would soon be asked to let down the walls of privacy that insulated and protected her family. The traditions and history of many generations made it impossible to trust the dreaded authorities. But the new danger required the summoning of strength from the deepest of human wells . . . a mother’s resolve. Father would remain impassive; a lifetime of inaction would not be transcended. With an odd mixture of resignation and hope, they looked to the doctor for answers.

    “What’s wrong with him?” my parents pleaded. “He’s always been a good boy. When will he get better? What should we do? How did this happen? Whose fault is it?”

    The questions were for the doctor, but later would be asked of God. A broken foot was for the doctor, but a broken boy – who is to treat such a sickness? Their generation had witnessed the medical miracles of modern science. They regarded the doctor with reverence. Indeed, the doctor was royalty.

    Doctor asked endless probing questions. She wished she could explain in Yiddish, but Doctor was a gentile; he would not understand her family regardless of the language. Still, she forced herself to try – his guidance was desperately needed. The immigrant’s dilemma, the inability to communicate in English, was always for her a source of pain and humiliation. She never forgave herself for her lack of education. Her husband’s understanding of English could not compensate for his lack of knowledge about his children’s lives. All he could do was help his wife understand the doctor’s questions. As always, she would make the decisions. His typical response to crisis had been activated; defenses went up as he distanced himself from the outside world.
    “He is a very sick boy,” the doctor declared. “You must trust us to treat him in the way we know best; otherwise he could be in a mental hospital for the rest of his life. You have to follow our instructions and leave him to us or we won’t be able to help him.”4

    Diversity demands that we listen very carefully to the needs of the focal person and his or her family. Families have a number of different responses to the experience of understanding that their relative is in distress. The responses will vary depending on the age of the relative, the familial relationship with the relative (parent, sibling, child or partner) and the culture of the family. When working with families, service providers must be prepared to think creatively and be willing to discard what might have been effective in their past work.

    For many families, their relative’s lead-up to the first break may be quite sudden:

    My son Jonathan was 19 when he went off to University. He was so excited that he had been accepted to the Engineering program at the University of Waterloo. Jonathan had never really been away from us and he was nervous about living in residence. In the beginning he seemed happy but then we started to get calls that he felt his roommates were talking about him and that some of them were even following him on campus. He became very fearful and soon stopped going to classes and would not leave his room. My husband and I decided to drive down to Waterloo. We were shocked by the condition we found Jonathan in. He looked exhausted and terrified. We packed his things and headed home. I remember on the car ride home feeling incredibly panicked about what was going to happen next. Where would we go for help? What was wrong with him and could he get better? Pauline5

    For other families, there may have been a long period of confusion, bewilderment and even denial about their relative’s distress.

    My brother Ibrahim and I had always been close. Ibrahim was the shy, sensitive type and I was the outgoing one. Even though we were so different from each other, we had lots of fun together. Then when we were in high school, Ibrahim started to spend more time in his room playing video games. He started missing classes and in grade 10 completely stopped going. I tried to talk to him but he would tell me to go away. He stopped eating with the family and would only come out of his room when we were all asleep. My parents started to fight about Ibrahim. My dad thought he was lazy and that my mother was spoiling him. My mother would yell back that we needed to be patient and that Ibrahim would “grow out of it” Our contact with Ibrahim was becoming less frequent but we could hear him in his room talking to himself and he had started to write swear words all over his walls. A couple of times you could hear him pounding the walls as if he was desperate to escape. I begged my parents to get mental health help for him but they delayed with lots of excuses. I knew that deep down inside they knew something was terribly wrong but in our culture, mental health issues is a huge taboo and I knew my parents were too ashamed to ask for help. I felt trapped, helpless and eventually hopeless . . . Shanti6

    We may be able to enhance the potential for positive outcomes for the entire family by utilizing the following assumptions:

  • Positive family relationships are integral to the recovery process, especially in first break.
  • Families deserve information, education and support that validate the unique experience of their relatives’ recovery journey and foster their own development and growth.
  • Families deserve a range of options, resources, and choices to have their own individual needs met, as no two families are alike.
  • Families require care and a community which acknowledges their strengths and potential.
  • Families and their relatives do best when they can share expectations and are able to derive meaning and understanding from the first break experience.
  • Families need to feel safe.

    Although we can identify general principles for working with families whose relative is experiencing a first break, foremost is an appreciation for the complexity of the task of understanding a particular family living during a specific time. Cultural competence when working with families is much more than noting the difference between East and West, individualism versus collectivism. Inclusion of religion, social class, economic status and geographic region, would still be less than a complete list of factors of influence. “Indeed, the mechanisms that explain national/ethnic, religious, regional, and socioeconomic cultural differences are likely to differ – and could include mediators as diverse as self-construal, fear of punishment from God, differences in agency and perceived control, or norms about reputation, to name a few.”7

    Immanent danger from the actions of the focal person can be dwarfed by the potential danger arising from the interventions of peacemakers.

    “One teenage African American girl locked herself in the bathroom, threatening to hurt herself if anyone came in. Her family called 911, and as her family described, ‘You know it looked like 100 police was here… They had like a SWAT thing or whatever. They had all these trucks and everything outside … everybody was screaming and everything… I thought they might shoot or something like that. Her sister was saying, “Don’t hurt my sister…they broke down the door . . . they handcuffed her . . . and she was (crying). ‘Why are you doing this to me?”8

    When the focal person is removed from his or her home and is treated in a psychiatric institution, he or she is required to adapt to an alien institutional culture. Upon discharge from such a residential setting, the family and the focal member are “educated” as to what to expect next.

    After about seven months, the day of my discharge arrived. I shuffled into the office, physically demonstrating the hospital’s successful transformation of anger, fear and defiance into apathetic compliance. My parents and I were to be interviewed and given instructions by the psychiatrist in charge of the insulin coma treatments. Ironically this man, who always seemed so amused by my quaint ideas, had appointed himself to be my outpatient therapist. I sank deeper into my chair, knowing full well I had no right to object to anything. Defeated and dejected, I was too weak to resist Dr. Diaz’s recommendations. His mission was to convince us that I was an incurable schizophrenic. I was twenty-three years old when that prosecuting doctor, serving also as judge and jury, sentenced me to a life of, at best, controlled madness. With the smug certainty of a bookie, he told my family that my chances of making it without being hospitalized again were very slim. His medical orders were stated with an absolute authority that discouraged any challenge. Barely acknowledging my presence, he declared, “Your son will have to take medication for the rest of his life and should return to the hospital regularly for outpatient treatment. He should look for a job in a low pressure, low stress environment. He should make new friends and avoid seeing any of his old friends.” Dr. Diaz was emphatic in alerting all of us to the chronic life-long course of my disease and explained how I would have to learn to live with my limitations.

    Most disturbing was to hear him say that I would never be free of that oppressive hospital’s control. To think of returning weekly to reveal any newly emerging hopes to my torturers was too much to keep suppressed, even in my quasi-comatose state. I wondered how this doctor could know so little about me. Did he have no comprehension of the condition I was in when he discharged me?

    The hospital staff had trained me well enough to know that I should not say anything there. Later, when I asked my mother to let me find another therapist, she consented. I was surprised how easily my mother agreed with me. She, too, did not share the hospital’s sense of accomplishment when they returned to her the shell of a once-promising son.9

    Initially, most caring and involved families, regardless of culture, will seek to resolve an emotional crisis without resorting to outside support, aid or intervention. A massive amount of information about troubling emotional states (mental illnesses) is easily available, via books, government pamphlets, television, movies, pharmaceutical promotions and the internet. Although there are many sources of information, there is essentially a uniform theme – that one is dealing with an illness requiring a medically-based approach. An outside expert, much more knowledgeable than you about your family member’s condition, will devise and implement the strategy for addressing the problem. The family’s first attempt to let down the wall of privacy and seek advice may begin with an inquiry among its network of friends and relatives. However, when the crisis is perceived as internally unmanageable and when the focal person’s suffering is too painful to continue to helplessly watch – or too frightening and bewildering – then resistance to involving outsiders is overcome. Eventually the search for solutions will lead to the experts, the mental health professionals. Once that concession to authority is made, the roles of the family members will change. Typically, deferral to the experts means, with a few exceptions, messages of resignation and suggestions on how to adjust to the inevitable ravages and downward spiral of mental illness.

    Typical messages conveyed to families:

  • Downsize expectations
  • Medications are essential
  • Potential for violence trumps risk-taking
  • Few viable alternatives exist, and they are cost prohibitive

    SERVICES FOR FAMILIES
    At first, family support and education programs were focused on teaching families about diagnosis, symptoms, medical treatments, mental health resources, crisis intervention, communication skills and self-care. There was little, if any, mention of recovery and no critical examination of the mental health system from a trauma-informed and anti-oppression perspective. Families lagged behind other interest groups in embracing a vision of recovery. In North America, an alliance of mutual interest between mental health professionals and family organizations has vigorously defended the biologically based medical model and has relied almost exclusively on psychiatric medications and coercive mental health legislation to “manage” those who are experiencing disturbing extreme emotional states. A collateral, damaging consequence of this ideology, with its limited treatment services, has been to foment divisiveness between c/s/x groups and family organizations. Psychiatric survivors have been highly skeptical of family involvement in the recovery movement. Yet when family abuse is not a factor, we might assume that people who are in extreme distress want and need the love and support of their families, just as we might assume most families care and want to be helpful.

    In the United States, the family psychoeducational approach emphasized the significant impact that families could have on the quality of life of their disturbed relatives. The new emphasis involved educating and persuading families that how they behave toward the “identified patient” can facilitate or impede progress by compensating for deficits and sensitivities specific to the various psychotic disorders. For example, a family might interfere with recuperation if, in their natural enthusiasm to promote and support progress, they create unreasonable demands and expectations, but that same family could have a dramatic positive effect on recovery by gradually increasing expectations and supporting an incremental return of functioning.10 In this approach, interventions common to family psychoeducation include empathic engagement, education, ongoing support, clinical resources during periods of crisis, social network enhancement, and problem-solving and communication skills.

    Attention to first break in early psychosis programs has expanded greatly over the past 10 years.11 Many of these new programs focus on treating young people as quickly as possible once signs of psychosis are observed. These programs are based on a multidisciplinary team approach which may include a psychiatrist, nurse, social worker, family worker, occupational therapist or employment specialist, recreational therapist, and in some places a psychologist, addiction therapist and peer support worker. These programs are often affiliated with a hospital and usually have access to in-patient facilities.

    The factors that distinguish the early psychosis model from more traditional mental health practices are easier and quicker access to service and adopting a cautious low dose approach to medications with an attempt to connect the young person back to regular life as quickly as possible by avoiding hospitalization. The talk therapies are valued, especially cognitive behavioral therapy. And perhaps most importantly, the early psychosis programs have recognized the importance of family involvement and family work.

    Yet, early psychosis work with families appears to do little more than present a repackaged and expanded version of the family education programs that has been done with families for the past 30 years. For example, William McFarlane’s multifamily group model, which was primarily developed for families who had a relative diagnosed with schizophrenia back in the 1980s, has now been tweaked for use with early psychosis programs.12 Early psychosis family education and support are giving families more hopeful messages about recovery. While this may seem like a significant advancement, the messages are full of conditions and contradictions. The recovery that they speak about is based on a medical model which means education about brain dysfunction, medication compliance, and professional intervention. The new message sounds something like this: “Your son has a serious condition called psychosis; we used to call this schizophrenia or bipolar disorder, but now we like to wait before we give a firm diagnosis. There are some clients that only have one psychotic break as long as they get on medication right away and stay on it for at least two years. Most people can resume a normal life.”

    While the information and education that families are receiving in early psychosis programs continues to be based in the medical model and does not represent a real “alternative,” the attitudes families encounter seem to be more caring, engaging and respectful than in past mental health programs.

    While the early psychosis model is in some ways a significant improvement from past mental health programs, care must be exercised not to forgo the search for more creative constructions by over-promoting these programs as a solution rather than as elementary starting points.

    Another approach is the Family Outreach and Response Program in Toronto, Canada. This program is unique in teaching and supporting families to develop a critical perspective on the mental health system and the services provided. Designed to help families create an environment that promotes the possibility of full recovery, the program offers individual support and counseling as well as a first break recovery course for families. This is a 10 week course which uses what psychiatric survivors have said were instrumental to their recovery and the principles of the Windhorse Guide for Families.13 Some of the key messages that families reported that they had taken away from the course were:

  • To view madness as a human experience
  • Hope is the cornerstone to recovery
  • To avoid creating learned helplessness by being over-involved
  • To support risk-taking and giving the relative the dignity and freedom to fail like any other human being
  • To let go of controlling relatives’ choices – this is a recovery journey
  • To stop viewing everything from a problem orientation and start building on strengths
  • Explore alternatives and use advance directives
  • Recovery is possible – even without professional intervention

    DISCUSSION
    We three friends and collaborators grappled with the dynamic and acrimonious schism between activists who have been diagnosed and treated for mental illness and family activists. It is difficult to create working alliances when past relationships have been marred by force, coercion, lack of choice, secrets, mis-information/tricks/lies, fear, harmful treatments and general and specific disempowerment for everyone. Unfortunately, mental health services have exacerbated many of the problems. Reconciliation with one’s family is a stage of recovery that is difficult to reach and deserving of more attention. To date, families faced with the crisis of a family member have had little choice but to deliver the focal person over to an inpatient facility. Too often, that person has returned in a sedated state with anger seething very close to the surface. Even in various stages of recovery, explanations as to what has occurred leave much to the imagination. Self-fulfilling predictions of a life of illness are unevenly distributed. Research is spotty as to who will succeed and who will live in a drugged state, spending a lifetime shuffling in and out of hospitals. The opportunity for the entire family and the focal member to explore their relationships, forgive and move forward with new understanding, is sorely missing.

    Generated from our listening to the expressed needs of families, we offer what we believe needs to change:14

  • Families need to be valued as important players in the care of their relative unless their relative does not want this.
  • Families need support regardless.
  • Families need information about alternative viewpoints about mental health distress that differ from traditional medical opinions. When families embrace alternative viewpoints, they need to be free from judgment from the medical community. Many families are pathologized if they do not want or support their relative in taking psychotropic medications.
  • Families need to be free of coercion from the mental health system. Families are often told that they are not good, helpful families if they do not ensure medication compliance or assist with a forced hospital admission.
  • Families need education and support that is relevant to their culture and in their language.
  • Families need to be taught about mental health issues from the perspective of consumer/survivors/ex-patients, not simply from the perspective of professionals. Families need to hear lots of recovery stories from both survivors and their families.
  • Families need support early and in locations of their choosing – home, community or office. Family support needs to be available in the evenings and weekends.
  • Alternative supports need to be easy to find and have.
  • Families need to learn skills to help their relative with distress. For example, how to respond in ways that are comforting to their relative when they are hearing voices or having unusual thoughts. Families need help understanding these experiences from an alternative perspective.
  • Families need to be supported in their letting go of controlling behavior so that they can enable the focal person to be less dependent and more self-determining.
  • Families need to know there are safe places for their relatives to go in crisis besides hospital, e.g., Soteria House. Families cannot be left alone to manage a crisis or severe distress.
  • Families need to know that they can be well even when their relative is in distress. Families need to learn their own wellness and self care strategies.

    Extreme emotions, idiosyncratic behavior and confusing cognitive ideation imbue the human condition with opportunities at a cost to our stability and security. The above statement brings to mind some questions that are at the heart of providing assistance and support to a family without doing irreversible damage to the troubled and/or troubling focal person.

    Just as culture is diverse, each family has a unique dynamic structure where the members’ interactions occur at a specific time within a continuously changing developmental space in relation to the community at large.

    An individual, a family, a network of friends and the community have absolute limits to what level of risks are tolerable. Guiding most issues is the question of dangerousness to self or others. Each family determines how much safety is required and when the threat of danger requires action. At core is determining whether a family unit can sustain the focal person within the home and provide an environment where positive growth is possible for all family members. Question: Can we look at ways to avoid formal professional intervention by activating family resources, i.e., extended family, friends, neighbors, faith community?

    Currently, there is increasing momentum to push for the early identification of first break symptoms. Some questions to consider:

  • Are we prematurely weakening the creative use of family resources?
  • With the early identification of what is perceived to be an unfolding first break process, are alternative explanations inhibited from consideration?
  • With questionable outcomes associated with the limited available services, does this case-finding generate an increasing number of false positives?
  • Will such early labeling induce more instances of avoidable internalized stigma for the focal person and the family?
  • Is it possible to disconnect early identification and prevention from diagnostic labels and formulaic interventions?

    When professional services are requested, some early interventions hold much promise. As demonstrated and supported by positive research results, Finland’s “Need-Adapted Treatment Approach” is individually tailored to the focal person’s needs. This approach offers the following clinical principles: “providing flexible therapeutic activities individually tailored to the patient’s needs . . . the patient should be present in all situations that concern him (including treatment planning), regular meetings include the staff, patient and family, or other support persons), a whole systems orientation is maintained, and continuity of treatment is provided.”15

    The Swedish “Parachute Project” attempts to adapt the “need-adapted model on a large scale for first episodes. “Six Principles describe the project’s clinical foundation . . . (1) intervention without delay by the Parachute team, preferably in the patients home; (2) initial crisis intervention is structured according to the patient’s needs; (3) immediate and recurrent family meetings, generally including the patient, intended 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; (4) accessibility and follow-up continuity provided by a specialized treatment team over a five year period; (5) use of the lowest optimal dose of neuroleptic medication; (6) access to small-scale, home-like, low stimulus overnight care when the patient’s home proved insufficient or negative during this period.”16

    The above examples of two progressive programs point to what can be created and also how much still needs to be done. Here, we see attention being paid to the focal person’s developmental history, where problems of living reflect the dysfunctional joining of past and present experiences and manifest themselves in the crisis of first break. The above programs seem to respect and honor collaborative problem-solving. The crisis is de-mystified when meetings are open to all and there are no secret plans. To validate the knowledge and intuition of the focal person and other key family members and to relate to them as worthy contributors helps the participants re-connect with their own under-utilized inner resources. When blocked by emotions and crisis, family members can benefit from assistance in relinquishing faulty assumptions that interfere with attaining clarity of thought and action.

    In conclusion, for the cadre of families this paper has focused upon, we suggest that the locus of control and power remain in the family with a de-constructing of the hierarchical relationships between family and mental health workers. It is important to look at what families can do best (love, support, encourage, keep safe and nurture) and how services can be created that will strengthen those features.

    Unlearning the myths associated with madness will allay some of our fears of the dark and allow us to raise a too-low threshold for risk-taking when facing the unknown.

    Click here to download document complete with footnotes.