families and schizophrenia: the view from advocacy

Psychiatr Clin N Am 30 (2007) 549–566

PSYCHIATRIC CLINICSOF NORTH AMERICA

Families and Schizophrenia: The Viewfrom Advocacy

Leighton Y. Huey, MDa,b,*, Harriet P. Lefley, PhDb,c,d,David L. Shern, PhDb,e, Cynthia A. Wainscott, BAb,f

aDepartment of Psychiatry, University of Connecticut Health Center, School of Medicine,263 Farmington Avenue, Farmington, CT 06030-1410, USAbThe Annapolis Coalition on the Behavioral Health Workforce, 222 Piedmont Avenue,Suite 8900, Cincinnati, OH 45219, USAcNational Alliance on Mental Illness, Colonial Place Three, 2107 Wilson Boulevard,Suite 300, Arlington, VA 22201, USAdDepartment of Psychiatry and Behavioral Sciences, University of Miami Miller School ofMedicine, D-29, PO Box 016960, Miami, FL 33101, USAeMental Health America (formerly The National Health Association), 2000 North Beauregard,6th Floor, Alexandria, VA 22311, USAfMental Health America of Etowah Valley, 25 Waterside Drive, Cartersville, GA 30121, USA

The history of understanding and interpreting causality in any field is notnecessarily a pretty picture with irreproachable logic in the discovery pro-cess, rationality in determining cause, clarity in delineating what should

be done, and, in the end, the presentation of a definitive roadmap as to howone should think. The context of knowledge and beliefs at the time determinethe state of an idea.

In the interpretation of human behaviors over the millennia, there are manyexamples of what would or should now be regarded as ranging from totallyoutlandish concepts to half-truths to plausible ideas that have some bearingon what is believed to be the case. In Psychiatry, similarly, has progressedfrom a purely descriptive and observational field in the nineteenth and muchof the twentieth centuries to one that now seeks to link itself to the modernfields of neuroscience, genetics, pharmacology, psychology, medicine, sociol-ogy, and economics. It is not surprising, therefore, when viewing the historyof the development of theories in psychiatry through the lens of hindsight,that the great thinkers sometimes made great blunders, shaped in good partby the limitations in knowledge of the time. Perhaps there is no more chargedarea in psychiatry historically than that involving families and schizophrenia.This article focuses on this topic from the perspective of national advocacy.

*Corresponding author. E-mail address: [email protected] (L.Y. Huey).

0193-953X/07/$ – see front matter ª 2007 Elsevier Inc. All rights reserved.doi:10.1016/j.psc.2007.04.006 psych.theclinics.com

mailto:[email protected]

550 HUEY, LEFLEY, SHERN, ET AL

HISTORICAL CONCEPTS OF THE FAMILY AND ITS IMPACTON THE INDIVIDUAL WITH SCHIZOPHRENIAWhere Does Vilification End and Fact Begin?Early theorists in psychiatry and psychology, which initially were descriptiveand observational fields, speculated that the association of schizophrenia run-ning in families reflected disordered family relationships; indeed, a pathologicfamily environment and interpersonal family dynamics were believed to becausative in the development of schizophrenia [1,2]. In the array of etiologictheories of schizophrenia, poor parenting and family dysfunction prevailedas explanatory models from the 1940s to the 1970s. The effects of these the-ories are still felt by families who coped with illness during those years. Psy-choanalytic theory attributed schizophrenia to early developmental failuresand toxic maternal anxiety. In the textbooks of the day, schizophreniawas variously attributed to schizophrenogenic mothers, mutually contradic-tory directives of the double bind generating emotional paralysis; communi-cation deviance in families; marital schism (producing sons who hadschizophrenia) or skew (producing daughters who had schizophrenia); andother models of family dysfunction. In family systems theory, the personwho had schizophrenia was viewed as the bearer and manifestation of thefamily pathology [3].

It was the concept of the ‘‘schizophrenogenic mother’’ postulated by Fromm-Reichmann [4] that ultimately catalyzed a deep and wounded response fromfamilies outraged by the blame for schizophrenia being affixed to motherswho were alleged to be rejecting, rigid, incapable of empathy, perfectionistic,and fearful of both sexual and interpersonal intimacy. Subsequently, with per-haps slightly more political correctness, the interpersonal machinations of thefather were added as additional factors in the development of schizophrenia[5,6]. Nuance on this theme was posited by others who postulated that commu-nication stress in the form of the ‘‘double-bind’’ hypothesis, in which the indi-vidual child or young adult could not fully and simultaneously satisfy thedemands of both parents placed the individual who had incipient schizophreniainto the dilemma of a psychologic spread-eagle that accounted for the emer-gence of ‘‘schizophrenic symptoms’’ [7]. This proposal led, partly in responseto these theories affixing blame to the family, along with general unhappinessabout the quality and experience of care, and families’ need and search for mu-tual support, to the emergence of the national family advocacy movement. Thismovement complemented the decades-old national advocacy movementfounded by a mental health consumer, Beers [8]. For some, this developmentresulted in a period of anger and mistrust toward the psychiatric establishment,leading to an estrangement between families and providers that is still palpableamong some despite the passage of time. Several factors diminished the powerof those early theories, and they now are essentially outmoded. Numerousanalyses showed that they could not be supported empirically [9]. Muchmore rigorous findings from twin, adoption, and high-risk studies were begin-ning to provide presumptive evidence of genetic linkages.

551FAMILIES AND SCHIZOPHRENIA

Proliferating findings from other areas of medicine, such as hematology,radiology, and neuroimaging, were demonstrating biologic parameters ofschizophrenia. An added factor to what seems in retrospect to have been oftenfree-wheeling speculation in the absence of data was the lack of a meaningfulsystem of classification at the time many of these primarily descriptive hypoth-eses dominated the field.

A More Contemporary ViewAlthough the diathesis-stress model prevails today, environmental stress is notusually defined as nurture. Rather, it is linked to intrauterine or neonatal insultfrom factors such as maternal starvation or type A influenza virus during ges-tation or to obstetric complications. These are the areas deemed most criticalfor prevention of schizophrenia [10].

As new drugs emerged to control psychotic symptoms, with concurrent ac-knowledgment of patients’ rights to least-restrictive settings and the implemen-tation of Medicaid and Federal disability programs, deinstitutionalization beganto empty hospital beds. The community mental health center legislation to pro-vide community care (PL 94-63) required crisis, inpatient, outpatient, day hos-pital, and community consultation services but lacked a mandate for housing.More than two thirds of hospitalized patients were returned to live with theirfamilies. Today this pattern varies greatly by ethnicity, with African Ameri-cans, Asians, and Hispanics more likely to have the ill person live at home[11]. Families, who in prior hospital practice had been systematically discour-aged from seeing their loved ones and rarely had been given information aboutthe disorder, were now the new caregivers of people who had schizophrenia.

The impact of home care giving emerged in new research on family burden.Objective burden consists of measurable effects in household disruptions, eco-nomic burden, caregivers’ loss of work, social, and leisure roles, and time spentnegotiating the mental health, medical, social welfare, and sometimes criminaljustice systems. Subjective burden refers to the emotional effects on the care-giver and other household members. Findings of numerous studies acrossa range of psychiatric disorders indicate that 30% to 60% of caregivers suffersignificant distress, with the negative impact highest in schizophrenia [12].

Instead of either or both parents being castigated as responsible for the emer-gence of schizophrenia, communication deviance was described within suchfamilies [13–16]. These early studies, with operational criteria and early re-search design, evolved into the concept of ‘‘expressed emotion.’’ A high valenceof emotional display characterized by hostility, negativism, criticism (ie, in‘‘high expressed emotion’’ or ‘‘high-EE’’ families), was believed to create con-flict and stress in the emotionally dependent individual who had schizophrenia.High expressed emotion was associated with relapse more often than low ex-pressed emotion, leading to the interpretation that the nature of communicationwithin families has a bearing on symptom development, relapse, and prognosisfor a family member who has schizophrenia [16–18]. Although family patho-genesis theories have been discredited, the deleterious impact of illness and


symptomatic behaviors can generate countertherapeutic responses in care-givers. This finding led to a new area of important research. As Barrowclough[12] notes, for at least 3 decades research on the family environment andschizophrenia has become almost synonymous with the work on. Caregivers’attitudes are assessed on the Camberwell Family Interview. Remarks indicatinghostile criticism or emotional overinvolvement with the patient above a certaincutoff point characterize families with high expressed emotion; families whosecommunications rank below the cutoff point have low expressed emotion. Innumerous studies, including international replications, the dichotomized ex-pressed emotion score is extremely reliable in predicting patient relapse afterhospitalization. High expressed emotion in families is predictive of the courseof illness in many psychiatric conditions, particularly depression [12]. Interna-tional schizophrenia research, however, shows that low expressed emotion ismodal in families in traditional cultures, whereas high expressed emotionmay be more typical of Anglo families in the United Kingdom, the UnitedSates, and Australia [19]. Leff and Vaughn [20] have linked the better prognosisfor schizophrenia in the developing countries to the importance of low ex-pressed emotion in extended kinship networks, in contrast to the care-givingburden of nuclear families of the industrialized west. A number of studieshave reported that prosocial factors in families with low expressed emotion,such as warmth and positive remarks, also tend to deter relapse [21,22].

The research in expressed emotion gave rise to early models of family psy-choeducation, replacing the older family therapies. Although family educationoriginally focused on reducing high expressed emotion, it was soon realizedthat high expressed emotion could be modified easily by educating familiesabout its negative effects,. Moreover, families with low expressed emotionalso needed the education and support provided by an empirically derived in-tervention that had no preconceptions of family pathology. Psychoeducationpresents schizophrenia as a biologically based, stress-related illness that leadsto multiple problems in living. The generic components of psychoeducationare education about the illness, support for families, problem-solving strategies,and illness-management techniques. In addition to understanding patients’likely physiologic arousal to environmental stressors, learning to defuse crises,and recognizing prodromal cues of decompensation, families are taught to re-duce their own feelings of guilt, confusion, helplessness, and overresponsibility.They become less judgmental and learn appropriate limits and expectations.Psychoeducational interventions in the United Kingdom and the United Stateswere developed as clinical research projects. In numerous rigorous studies, in-cluding international replications, they demonstrated their effectiveness in de-terring relapse and easing family burden [11,12]. Unfortunately, despite itsbeing an evidence-based practice, family psychoeducation is not widely appliedin mental health systems today [23]. The efficacy studies require a 9-monthcommitment, not always achievable. Applications of the basic model havebeen extended and modified in many countries in Europe and Asia [24]. Inthe United States, more compact, shorter models have developed, such as


the 12-week Family-to-Family program of the National Alliance on Mental Ill-ness (NAMI), which is supported by many public mental health authorities.Family support groups sponsored by NAMI are found in every state and inmore than 1100 localities. Other groups sponsored by Mental Health America(MHA) (formerly, the National Mental Health Association) or local mentalhealth authorities provide education and fellowship as well. Research byMcFarlane [25] indicates that psychoeducation for multifamily groups providesbetter outcomes than single-family models. The multifamily group offers mu-tual support and help, shared experiences, resource information, exchange ofcoping strategies, and, in some cases, the hope of recovery.

Finally, in contrast to family burden, several investigators have attempted tofocus on family satisfaction in living with a member with schizophrenia. A longi-tudinal study of 122 mother–adult child dyads found that maternal expressionsof warmth and praise were associated with a better quality of life and higher lifesatisfaction in adults who had schizophrenia [26]. These authors note that ‘‘in themental health field, the emphasis had been on fixing families . . . with relativelylittle emphasis on the families’ strengths, particularly the families’ role in enhanc-ing the life satisfaction of their loved one by being there as a source of support.’’The authors suggest that prosocial family processes, like warmth in the researchon expressed emotion, may enhance many clients’ potential for recovery. Withsuch an historical perspective, admittedly brief and incomplete, the authors nowshift the focus to what would be considered a more contemporary perspective onthe broad topic of families and schizophrenia.

HOW FAMILIES RESPOND TO SCHIZOPHRENIAIn the modern concept of illness, schizophrenia connotes many things to the in-dividual unfortunate enough to be given a competent diagnosis of schizophre-nia, to his or her family, and to society. Individuals who have schizophreniaand their families may share a range of understandable responses includingfear, anger, grief, mourning, disbelief, demoralization, loneliness, desperatio-n—and for some, hope, fortitude, resourcefulness, adaptability, perseverance,and political assertiveness. These responses are all part of contending withthe common symptoms of schizophrenia, especially the fear that both the indi-vidual and their family must feel in experiencing and witnessing the onset of thedisorder. It is important to have practical approaches to help families deal mosteffectively with the family member who has schizophrenia. Respected nationaladvocacy organizations (eg, NAMI, MHA) play critical roles at multiple levelsin helping individuals who have psychiatric disorders and their families.

Families differ in their understanding and acceptance of mental illnesses andin their coping strategies. Their responses depend on the duration of illness,symptom intensity, levels of burden, and relatives’ attributions. Researchshows that families with high expressed emotion, especially those that respondwith hostile criticism, tend to attribute volition to patients for their disturbedbehaviors. The same is true for high–expressed emotion professionals andline staff [12]. Families with low expressed emotion do not hold the patient


responsible. They have been described as calm, warm, and accepting, despitecoping with equally severe psychopathology [20]. Cultural differences are evi-dent in the international literature and among ethnic groups in the UnitedStates. Comparative studies indicate that ethnic minority families show fewercausal attributions, more home care giving, lower family burden, and less psy-chologic distress than Anglo-American families [27].

Parents, siblings, spouses, and children may respond in different ways, butall suffer some level of grief. Because schizophrenia often strikes in late adoles-cence or early adulthood, parents mourn the loss of the premorbid personality,perhaps once bright with promise. There is a feeling of dual loss—of the personwho was and of the person who might have been. They share the suffering ofthe loved one who has schizophrenia, who also mourns unfulfilled life aspira-tions. Siblings, too, grieve the loss of a playmate or older brother or sister, andsome become involved caregivers later in life. Many siblings, however, reportshame, anger, embarrassment, and inability to bring friends home. They resentthe diversion of parental attention and later have unresolved conflicts and guilt.Spouses suffer the loss of a mate and often must bear sole or major responsi-bilities for childrearing and the economic life of the family. Children maylive in an unpredictable world, bewildered by parental behaviors that can cyclefrom loving and nurturing to fear-inducing. They may endure long separationsand brief visitations, sharing the grief of a parent aching for reunification witha beloved child. All these familial reactions and concerns are highly prevalentin the literature [11].

Most aging parents worry about who will care for a middle-aged child whohas schizophrenia when they are gone. ‘‘Perceived family burden,’’ a corollaryconcept to expressed emotion, is viewed by some as having more predictivevalue for relapse in schizophrenia then in controls. Other aging parents, how-ever, report gratitude for the contributions of their loved one to the family wel-fare [26]. Perhaps this is why the term ‘‘burden’’ has been rejected and insteadconceptualized as family care giving within a stress-appraisal-coping frameworkthat accommodates positive as well as negative perceptions [28].

All families suffer the stigma of mental illness, on behalf of their loved oneand sometimes by association. Stigma of course has adverse consequences interms of availability of jobs, insurance, higher education, and possibilities formarriage. With advocacy groups working to change perceptions of mental ill-ness in the popular media, and with increasing self-disclosure on the part ofcelebrities as well as the general public, there is beginning to be some reduc-tion of stigma. Moreover, newer medications and psychosocial treatments, therecovery orientation in mental health services, and overt evidence of con-sumer strengths and talents are beginning to change the public face of mentalillness.

WHAT FAMILIES WANT FOR THEIR LOVED ONESDepending on the level of functioning of the person who has schizophrenia,families often are conflicted between wanting optimal protection for their loved


ones and optimal opportunities for independent living. Family members oftenare the first to view psychotic episodes or suicide attempts. They need speedyaccess to crisis intervention, preferably in the home, that may avert the indig-nities of involuntary treatment. If inpatient care is indicated, both patients andfamilies need relief from premature discharge that may recycle known patternsof rehospitalization, or, worse, homelessness or even jail.

Families want protections in terms of disability entitlements and more com-prehensive, effective, and respectful services. NAMI, MHA, and others haveadvocated for protection and advocacy legislation and reduction of institutionalseclusion and restraints. They have lobbied for equitable Federal benefits andinsurance parity and have worked for greater use of the evidence-based Pro-gram of Assertive Community Treatment (PACT) programs that avoid hospi-talization. Most recently, NAMI published a comprehensive report grading thestates on mental health systems in terms of infrastructure, information access,services, and recovery supports. Some state administrations used their poor rat-ing to receive additional funds for needed services [29]. MHA has launched Di-alog for Recovery to provide specific help to consumers in navigating the recoveryprocess as well as sponsoring successful, Medicaid-funded peer-specialist inter-ventions around the nation. MHA’s National Consumer Support Technical As-sistance Centers and Self-Help Clearinghouses around the country strengthenconsumer-run advocacy networks through grants and technical assistance toensure that the consumer voice is always present in the planning, implementa-tion, and evaluation of mental health delivery systems and their policies.

Above all, families share consumers’ desires for greater autonomy and inde-pendent functioning of their loved ones. Despite areas of dispute, there is aninherent goodness-of-fit between the basic agendas of the consumer and familymovements, a clear correlation between patient autonomy and caregiver relief.Families have the right to live their lives free from worry and pain. This rightcan be achieved only when patients have the right to achieve their fullest poten-tial in a well-funded, evidence-based, peer-supported, and recovery-orientedmental health system.

WHAT FAMILIES WANT FROM THE HEALTH CARE SYSTEMGiven the evolution of knowledge regarding the origin and treatment of per-sons who have schizophrenia, families want a responsive and integrated healthcare system. They want a system that is safe and effective and that meaning-fully engages the primary consumer and his/her family as partners in develop-ing and implementing a treatment and support plan.

Above all else, the treatment system must focus on safety. Persons who haveschizophrenia are at elevated risk of premature death both through suicide andfrom a large variety of physical causes [30,31]. Additionally, individuals whohave psychotic disorders are at risk for involuntary care and restraint that pres-ent potential immediate health dangers as well as the longer-term effects of re-traumatization for persons who are likely to have experienced trauma. Fortreatment to be safe, it must anticipate these risks and respond to them


appropriately. At least three strategies seem critical to ensure safety. Thesestrategies are related to the issues of effectiveness that are discussed later.

First, it is critical that a strong, continuous relationship be established be-tween a person who has schizophrenia and a clinical team, probably a teamin the specialty mental health sector. This relationship should be characterizedby a true clinical alliance, one that is open, with shared decision making. Con-sumers sometimes report a reluctance to discuss how they might be feeling (eg, ifthey are feeling suicidal) with their therapist because they fear this revelationwould invoke involuntary treatment (eg, hospitalization, medications againstwill, conservatorship). Shared decisions that are memorialized in advanced di-rectives might allay some of these fears and increase the effectiveness with whichsuicidal thoughts and behaviors can be monitored and the individual who hasschizophrenia can remain safe. To the degree that the primary consumer con-sents, family members clearly can be important partners in helping reduce therisk of suicidal behavior. A strong consumer/family/clinician partnership alli-ance may be among the most important suicide prevention strategies.

Second, it is essential that persons who have schizophrenia have a primarycare home and a functioning partnership with their primary care provider. Al-though suicide is an important cause of premature mortality, persons who haveschizophrenia are estimated to lose 25 years of life from a wide variety ofcauses including cardiovascular disease, endocrine disorders, hypertension,and other health problems. [30]. Although much needs to be known abouthow best to reduce this premature mortality, it generally is agreed that muchstronger links should be formed with primary care [32]. Also, wellness pro-grams that promote healthful behaviors and assist persons in managing theweight gain that is associated with many of the second-generation antipsychoticagents are thought to be an important part of an overall strategy to prolong lifein persons who have schizophrenia.

Finally, it is important that that all care be trauma informed. A recent over-view of the research on childhood trauma and schizophrenia states that al-though reported prevalence is relatively high, there are many methodologicproblems, and evidence of a causal linkage is ‘‘controversial and contestable’’[33]. Traumatic memories, however, may be severe and require sensitive inter-ventions over and above the usual treatments. Any prior exposure may be ex-acerbated in institutional settings where retraumatization may occur. A surveyof persons who had severe mental illness and a history of psychiatric hospital-ization assessed the number and type of events that they experienced as harm-ful within a psychiatric setting. Forty-seven percent reported experiencinga Diagnostic and Statistical Manual of Mental Disorders-IV–defined traumatic eventwhile in the hospital; 44% reported sexual or physical assault, and 23% re-ported intimidation or abuse from staff. Altogether, 86% reported traumatiza-tion from institutional events and procedures. Patients who experiencedwhat the authors termed ‘‘sanctuary trauma’’ within the psychiatric settinghad higher subjective distress scores, more recollections of fear, helplessness,or horror, and a longer period of feeling upset after discharge from the hospital


[34]. The use of restraints is a poignant example of treatment methods that mayretraumatize persons who have a history of a trauma, reinforcing the psycho-logic damage attendant on traumatic experiences. Trauma experienced withina setting that is supposed to be protective and therapeutic is obviously outra-geous and totally unacceptable. It is a complete refutation of the mandate todo no harm. These findings cry out for system reform.

Clearly, designing a health care system that promotes safety is essential. Ad-ditionally, families want health care systems that are effective. For a system tobe effective, it must be accessible and provide evidence-informed, quality care.Accessibility involves temporal, financial, and psychologic dimensions. Giventhe chronic and recurrent nature of problems associated with schizophrenia,help must be available to consumers and their families continuously. Ideallythis help involves a range of services that vary in intensity from emergency/inpa-tient care to drop-in centers, consumer self help, and mutual support groups. Caremay involve face-to-face interaction or availability by telephone or the Internet.

For services to be accessible financially, the price of the services must allowthem to be used when needed. Price involves both the out-of-pocket expensesfor consumers and their families and reimbursement by insurers and otherpayers. Lack of adequate insurance coverage can be financially devastatingfor families and can leave individuals who have this chronic disease impover-ished [35]. Affordability and availability—both importantly determined by thefinancing system—are critical to access.

Finally, services must by psychologically accessible. That is, services must beseen by the recipient of care and the family as personally relevant and respon-sive to their ideas regarding the nature of care needed. Helping an individualenter into a change process and a helping relationship through motivational in-terviewing [36], readiness preparation [37], or other engagement strategies ispart of creating an accessible system. Understanding cultural and linguistic dif-ferences among individuals and having a strong focus on developing a genuinepartnership that involves shared goals and strategies are keys to psychologicaccessibility. As mentioned earlier, the fear of involuntary care (which may it-self be retraumatizing) often makes care much less accessible. In fact, personsliterally flee from helping relationships when they perceive the possibility of co-ercive interventions. Work by Monihan and colleagues [38,39] indicates thatthe perceived coercion in an intervention, rather than objective coerciveness,is critical in determining its detrimental effects. These findings underscorethe importance of active engagement strategies to involve individuals in theircare. Psychologic accessibility, therefore, implies dignity, respect, and hopeful-ness in the interactions between a consumer, the family, and the treatment sys-tem and is fundamental to implementing an effective program of care.

Effective care also must be science based and/or evidence informed. Resultsfrom the schizophrenia Patient Outcomes Research Team [40] indicate that thetreatment of schizophrenia, like treatment in the general medical sector [41],does not comport with the best scientific evidence. Although an extensive re-view of this emerging literature is not presented here, it is critical that


evidence-based approaches be available and delivered with fidelity in conceptand design. The Substance Abuse and Mental Health Services Administrationhas developed a National Registry of Evidence-based Programs and Practices(http://modelprograms.samhsa.gov/template.cfm?page¼nreppover) as a na-tional resource for certifying programs as meeting systematic standards of sci-entific evidence. A toolkit for evidence-based family psychoeducation isavailable for mental health systems to use in involving families as educatedpartners in care.

Requiring a strong science base should not unnecessarily limit treatment orrehabilitation choices. When multiple approaches have been shown to be effec-tive (eg, in improving community functioning), an array of program choicesshould be available. This array will support the match between an individual’sneeds, desires, and biology and the most effective treatments. These decisionsshould be informed by science but ultimately must be negotiated by a well-in-formed and informationally supported clinician in a meaningful partnershipwith a consumer and the consumer’s family. Choice among evidence-basedalternatives is essential.

Finally, as noted in the President’s New Freedom Commission on Mental Health[42], recovery from severe mental illnesses should be the expected outcomeof treatment and rehabilitation. Although each individual’s specific outcomesare unique, a real life in the community is often a desired end point. Recov-ery-oriented services involve more than symptom management and must in-volve strategies to assure optimal community participation and recoveryfrom illness. Rehabilitation, self-direction, development of natural supports,environmental accommodation, and support often are be key elements ofrecovery-oriented services.

In short, individuals who have schizophrenia and their families want thesame features in their health care system that are desired by everyone: safety,effectiveness, and a real role in directing care resulting in optimal communityparticipation. These qualities are not the legacy of the current system, whichoften has been inflicted on consumers who were assumed to be incompetentto participate in their care. Such alternatives never were acceptable and willnot be tolerated by contemporary health care consumers and the people whocare about them.

Although safety, effectiveness, and meaningful engagement seem like obvi-ous characteristics of health care, they are not the rule for the current treatmentenvironments. A poignant example involves the premature death of personswho have schizophrenia. There is nothing ambiguous about death as an out-come. These problems have been known for more than 50 years [43], but, in-stead of stimulating an effective response, the number of lost years of life hasincreased to about 25 years during the last 2 decades. The safety of the healthcare system has not been revised relative to this unambiguous outcome. Therecontinues to be talk about better integration of health delivery systems, butvery little real progress has been made in assuring that persons who haveschizophrenia receive the health care they need. In fact, the problems are

http://modelprograms.samhsa.gov/template.cfm?page=nreppover

http://modelprograms.samhsa.gov/template.cfm?page=nreppover


getting worse. When the history of this time is written, the inability or unwill-ingness to address this issue aggressively probably will be seen as shameful—-much like custodial care in large institutions.

Similarly, although Harding and colleagues [44] did their seminal work onrecovery in the late 1980s and Beers [8] and others who have mental illnesseshave educated us about the hope and reality of recovery, many clinicians donot understand, embrace, or promote recovery. To clinicians, recovery oftenis defined in terms of symptom reduction and increased functional capacity.To consumers, recovery means moving beyond the constraints of the illnessto achieve a positive self-concept and lead a satisfying life. Long-term studiessuggest that as many as 50% of people diagnosed as having schizophreniahave good outcomes in terms of being able to live productive and satisfyinglives [45]. Follow-up studies have shown that some patients who have schizo-phrenia can achieve recovery even without maintenance pharmacotherapy[46].

The President’s New Freedom Commission Report on Mental Health [42] recom-mends a recovery-oriented mental health system that is consumer and familydriven, based on the defined needs of service recipients rather than those ofproviders. The report’s recommendations emphasize the importance of evi-dence-based psychiatric rehabilitative practices such as supported employment,skills training, assertive community treatment, and cognitive behavioral ther-apy to cope more effectively with symptoms. Also recommended are psycho-education for families and ensuring a collaborative relationship betweenfamilies and the treatment team.

Clinical staff still is not being trained adequately at all levels in the client-cen-tered, rehabilitative techniques thought to speed recovery. Pharmacologic treat-ments probably have been overemphasized, and the role to the treatingpsychiatrist has been marginalized to focus almost exclusively on medicationmanagement and not on the overall management of health. Ironically, someof the most discriminatory attitudes toward persons who have mental illnessesthat the authors have encountered have been expressed by clinical staff, manyof whom provide little hope or optimism to persons who have schizophrenia ortheir families although it is known that hope is an essential ingredient for treatmentengagement and recovery [37]. System barriers are discussed later, but it should beacknowledged here that the pace of change in clinician attitudes and skills has beenembarrassingly slow. While psychiatrists have worked on the margins, thousandsof years of productive lives have been lost. Psychiatrists must do more, and advo-cacy groups like MHA, NAMI, the Depression and Bipolar Support Alliance, andothers must demand that the pace of change improve dramatically.

WHAT DO FAMILIES WANT FROM SOCIETY?In support of a ‘‘real life in the community,’’ families expect nondiscriminatorysocial policies that treat behavioral health no differently from general health.Families continue to suffer from the legacy of state hospital care in society’s at-titudes toward people who have schizophrenia and other severe mental


illnesses. The state hospital era was characterized by a separate, state-fundedsystem in which custodial care was the mode. The development of the commu-nity care system coextensive with the downsizing and occasional closure ofstate hospitals preserved this separately financed, separately administered,and separately regulated system. The separate community system was not com-prehensive, however, and efforts to reform it highlighted the need for a broadrange of services and supports to promote successful community living [47].Given the state’s traditional role and the general belief that persons who hadschizophrenia had a progressively deteriorating course of illness requiring long-term institutional care, the development of health insurance largely omitted ade-quate coverage for the long-term treatment of mental illnesses. Results from theRAND Corporation’s health insurance experiment regarding the price elasticityof demand for mental health services [48] and ongoing public ignorance regard-ing the legitimacy of less severe disorders perpetuated this unequal treatment ofmental illnesses in health insurance. It now is understood that behavioral healthconditions are legitimate health conditions in every respect and that their paritycoverage in health insurance does not dramatically increase health care expendi-tures in a contemporary health insurance environment [49]. Therefore, discrim-ination against persons who have mental illnesses in both acute and long-termcare is no longer sensible or tolerable. Families want this form of discriminationand all other discriminatory laws and policies to be eliminated.

Families also want society to adopt a public health model for the preventionand treatment of behavioral health conditions. Such a model would include sur-veillance systems to monitor population health status and systematic publichealth measures to improve the public’s behavioral health and, ultimately,overall health status. Well- researched prevention programs exist and shouldbecome universally available, as should screening and early identification ofmental illnesses. Rapid and effective services for persons who are identifiedas having mental health conditions could reduce the disability associatedwith these conditions and promote the full participation of persons who havemental illnesses in all aspects of society. For persons who develop disability as-sociated with their conditions, rehabilitative services must be provided to pro-mote the reacquisition of skills lost to illness. Social barriers to full participationthat result in handicaps also must be identified and eliminated. Much as the de-velopment of ramps allowed wheelchair-bound persons greater mobility andsubsequently greater participation in their environment, it is important to iden-tify and eliminate restrictions that frustrate the full participation of persons whohave behavioral health disorders in all aspects of society.

Similarly, families want society to realize that behavioral health conditionsunderlie social problems in every human service sector but generally are notthe principal objective in any sector. School performance, for example, is af-fected dramatically by socioemotional functioning [50,51], but universal screen-ing and treatment of these disorders still is not common and in some areas ofthe country is actively opposed. Most children in the juvenile and adult correc-tional system have behavioral health conditions that often are not identified or


appropriately treated. Society must understand more fully the impact of theseuntreated or undertreated conditions on the health of the community.

Consistent with this broad, social perspective on health, families would likethe total costs of inadequate prevention, treatment, and rehabilitation to bedocumented fully and understood. No longer should policies in one sector ofsociety (eg, restriction of coverage for mental health conditions) be allowedto cause increased costs in other sectors of the economy (eg, correctional sys-tems) [52] without the transparent recognition of the shift of expenses acrosssector. It is only with the adoption of a full societal-cost model that the ineffi-ciencies in the present fragmented systems will become clearly apparent sothat it will be possible to begin to develop integrated approaches to promotingpublic health.

Last, families of persons who have schizophrenia would like society to de-velop communities in which the family member can be welcomed fully andsupported. Public attitudes that continue to stigmatize and shame personswho have schizophrenia significantly limit their ability to participate in all as-pects of community life. Tolerance for differences among individuals isa core component of these attitudes that would benefit everyone in a commu-nity. Involvement rather than marginalization will contribute to communityproductivity and cohesion and will be related importantly to the recovery ofindividuals who have schizophrenia.

Families of persons who have schizophrenia, in short, want a society thatsupports these long-term disorders effectively and that promotes maximal com-munity participation for all long-term disorders equitably. They want a societythat responds humanely and quickly to persons who are becoming ill, a re-sponse that promotes well being and productivity. They want a society inwhich persons will have sufficient skills to succeed and where environmentswill be designed to prevent the development of illness or to minimize morbid-ity. As with their desires from the health care system, family desires for just andequitable treatment by society mirror those of everyone. When persons whohave schizophrenia are welcomed into the community and can participate fully,everyone will benefit.

As in the overall health care system, the rate of change in society has beenunacceptably slow. Psychiatrists, as advocates, have failed to make a compellingcase to the general public and to marshal the political will to implement whatthey know is necessary. Advocacy organizations and concerned professionalsmust work together to develop the public and political pressure to address dis-crimination and to implement social policies that promote well being. Formingpartnerships with other groups who do not have a parochial or guild interest inthese issues (eg, sheriffs, public prosecutors and defenders, judges, schoolleaders, and others) is a promising strategy. It is in psychiatrists’ enlightenedself-interest to implement these policies, but, although they have made impor-tant progress in improving public attitudes, they have not yet convinced poli-ticians and the public of the urgency and sensibility of these policies. Morework is needed.


NEW MODELSNational advocacy in behavioral health reflects the shift to a consumer-orientedsociety and even more the dissatisfaction of patients and their families with theprovider ‘‘field’’ (ie, psychiatrists, psychologists, social workers, nurses, coun-selors, hospitals and long-term care facilities, administrators, the government,and other entities). Additional unhappiness with the manner in which individualswho had psychiatric disorders were being treated by society in general extendedthe dissatisfaction to schools, businesses, housing, and politicians. As respectednational advocacy organizations (eg, NAMI, MHA, the Depression and BipolarSupport Alliance, Children and Adults with Attention Deficit Disorder, andothers) have become increasingly active with accompanying political clout,a number of initiatives have taken root within behavioral health. These initiativestranslate into new models and concepts of care that transcend the power dynamicof the traditional provider–patient–family interaction. Here are some of the newmodels that reflect the process and outcomes that families want to experience inthe treatment and support of persons who have schizophrenia:

1. Patients and families, trained as peer counselors, are formally incorporatedinto and reimbursed as members of the multidisciplinary treatment team as-suring that patient and family perspectives are incorporated into all caresystems.

2. Patients and families whose members are in care expect to be informed fullyon all relevant information that has a bearing on assessment, treatment, andoutcomes in the context of a shared decision-making paradigm.

3. Recovery and rehabilitation need to be central and functional concepts in theoverall behavioral health care system. Clinicians and other caregivers shouldunderstand the importance of hope, skill-building, and supportive environ-ments to maximize the fullest participation possible in society.

4. The separation of the traditional behavioral health care disciplines,promulgated primarily by the guilds, has no place in the framework of a com-prehensive, integrated system of care. Although each of the disciplines hasa unique set of skills, they are not substitutes for one another. Role differenti-ation within an integrated framework provides the comprehensive careneeded by individuals who have schizophrenia. For example, psychiatristsmust assume greater responsibility for the overall medical managementwith particular sensitivities to the management of comorbid illnesses; nursesmust assume responsibility for ongoing medical support and patient educa-tion; social workers must assume responsibility for providing access to thefull range of community supports and skills to manage community life; psy-chologists must assume responsibility for specific need and skill assessmentrequired to craft treatment and rehabilitation plans. Other members of theprofessional team (eg, aides, assistants, and others), who often spend themost time with service recipients, must be involved fully in the treatmentplan and supported to assure that the plan is delivered successfully. Fragmen-tation and poor role definition are not acceptable.

5. Preprofessional training across disciplines must reflect the characteristics ofan integrated, interdependent system of care that involves patients and fam-ilies explicitly and includes technologies to support recovery outcomes, so


that the next generation of providers will enter the workforce trained in thesebasic principles [53]. Funding should support innovative, cross-disciplinarytraining models that incorporate the principles articulated in this article.

6. Society, in general, and the individuals responsible for the distribution of publicandprivate resources (eg, politicians, industry leaders) in particularmust be ed-ucated regarding the prevalence of mental illness, the effects of not providingeffective early recognition and intervention services, and the ultimate effects onboth personal and community well being of untreated or ineffectively treatedmental illnesses. Given the impact of psychiatric illness on theburden of diseaseand global economics, a reprioritization of resources is needed to addressthese issues properly, to a degree commensurate with their impact.

7. Information systems that support good practice must be designed, and pay-ment systems that encourage such practice must be instituted. Practitionersmust have information systems that support good clinical decision processeswhile appreciating the unique nature of every person’s needs and circum-stances. Health information systems also must be integrated so that the con-sumer and all the providers have access to a full range of informationregarding the patient’s care. Generally, the state of the health information in-frastructure is very poor. It is hoped that someone reflecting on the state ofhealth care in 2007 a decade from now will marvel that providers did aswell as they did, given the inadequate support currently provided to clini-cians in decision making and assessing the progress of care.

8. As with health in general, the present health care system concentrates more onmedical care than on public health. Early identification and prevention canhave major impact on reducing morbidity and, one hopes, on eliminating ill-ness at some point in the future. In behavioral health, a more acute sense of pub-lic health concepts and methods must be developed. Advocates must insist onthis framework in evaluating the effectiveness of science in impacting wellbeing.

9. The meaningful integration of behavioral health into the general health caresystem is imperative to address the historically poor level of general healthcare received by individuals who have psychiatric disorders. The separateand unequal provision of health care to persons who have psychiatric disor-ders can no longer be tolerated.

10. Pay-For-Performance and similar concepts that reward good clinical behaviorand punish poor clinical behavior in the form of differential reimbursementshould become a standard of practice in behavioral health. Should accredita-tionand licensingof systemsand individuals be linked to the concepts expressedherein? The need for improvement in all areas on behavioral health care, but inparticular in the public sector where many individuals who have schizophreniaand their families initially or ultimately find themselves, is essential.

11. The collective political strength of national advocacy should have consider-able influence on the funding of systems and practices from clinical, training,and research perspectives that reflect these principles and concepts.

SUMMARYHistorically, families of persons who have schizophrenia have been blamed forthe development of the condition and subsequently have been excluded


systematically from care. Now these notions, which never had much systematicempiric support, have been abandoned, and the importance of family involve-ment in the care of persons who have schizophrenia is becoming recognized.Family involvement often is critical to the recovery process and must beengaged actively whenever possible.

Although the engagement of the family in the care of the person who hasschizophrenia is essential, it is not sufficient. Primary consumers and familiesrealize that the entire care process needs to be redesigned. It must be explicitlycollaborative in its orientation and must begin to include routinely evidence-based treatments that are informed by a vision of recovery. The inclusion ofindividuals in recovery and their families in the treatment and training processwill help integrate these important perspectives into the core of the operation.The sobering data regarding early mortality among persons who have schizo-phrenia point out the need to work aggressively to assure full integration of be-havioral and primary health care. This integration probably will beaccomplished best through the development of integrated care settings, perhapswithin the context of disease management programs, within primary care sys-tems. The community mental health center may be an icon of the past repre-senting the de facto segregation of individuals who have schizophrenia.Integration with primary care cannot be postponed any longer.

Finally, much work remains in changing public perceptions regarding the fullinclusion of persons who have schizophrenia and in eliminating discriminatorylaws, regulations, and practices within communities. This last point is probablythe most fundamental challenge to society. At all levels, society must begin toembrace a vision of a meaningful life for the individual who has schizophreniathat, to the extent possible and despite the challenges, maximizes participationin a comprehensive program of identification, treatment, rehabilitation, and re-covery. Early identification, early intervention, recovery, and rehabilitationhave had limited impact in the current system of care. Such limitation margin-alizes the quality of life of individuals who have schizophrenia and their fami-lies because of delays in accessing care that is proper, relevant, andcompassionate. Only when this waste of human capital and the loss to commu-nities through such marginalization is recognized fully will it be possible tomove aggressively move to fix the broken approaches in the care for personswho have schizophrenia and other long-term, disabling illnesses.

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families and schizophrenia: the view from advocacy

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