The Evidence Family Psychoeducation
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Substance Abuse and Mental Health Services Administration Center for Mental Health Services www.samhsa.gov
The Family Evidence Psychoeducation
U.S. Department of Health and Human Services Substance Abuse and Mental Health Services Administration Center for Mental Health Services Acknowledgments
This document was prepared for the Substance Abuse and Mental Health Services Administration (SAMHSA), U.S. Department of Health and Human Services (HHS) under contract numbers 280-00-8049 with the New Hampshire-Dartmouth Psychiatric Research Center and 270-03-6005 with Westat. Neal Brown, M.P.A., and Crystal Blyler, Ph.D., served as SAMHSA Government Project Officers.
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The views, opinions, and content of this publication are those of the authors and contributors and do not necessarily reflect the views, opinions, or policies of the Center for Mental Health Services (CMHS), SAMHSA, or HHS.
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Recommended Citation
Substance Abuse and Mental Health Services Administration. Family Psychoeducation: The Evidence. HHS Pub. No. SMA-09-4422, Rockville, MD: Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services, 2009.
Originating Office
Center for Mental Health Services Substance Abuse and Mental Health Services Administration 1 Choke Cherry Road Rockville, MD 20857
HHS Publication No. SMA-09-4422 Printed 2009 The Evidence
The Evidence introduces all stakeholders to the research literature and other resources on Family Psychoeducation (FPE). This booklet includes the following: Family
A review of the FPE research literature; Psychoeducation A selected bibliography for further reading; References for the citations presented throughout the KIT; and Acknowledgements of KIT developers and contributors. This KIT is part of a series of Evidence-Based Practices KITs created by the Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services.
This booklet is part of the Family Psychoeducation KIT that includes a DVD, CD-ROM, and seven booklets:
How to Use the Evidence-Based Practices KITs
Getting Started with Evidence-Based Practices
Building Your Program
Training Frontline Staff
Evaluating Your Program
The Evidence
Using Multimedia to Introduce Your EBP What’s in The Evidence
Review of Research Literature...... 1 Family Selected Bibliography ...... 11 Psychoeducation References ...... 17
Acknowledgments...... 23
The Evidence
Review of the Research Literature
A number of research articles summarize This article describes the critical the effectiveness of Family components of the evidence-based model Psychoeducation (FPE). This KIT includes and its effectiveness. Barriers to a full text copy of one of them: implementation and strategies for overcoming them are also discussed, based Dixon, L., McFarlane, W. R., Lefley, H., on experiences in several states. Lucksted, A., Cohen, M., Falloon, I., et al. (2001). Evidence-based practices This article may be viewed or printed from for services to families of people with the CD-ROM in your KIT. For a printed psychiatric disabilities. Psychiatric copy, see page 3. Services, 52, 903-910.
The Evidence 1 Review of Research Literature
2001 Evidence-Based Practices for Dedicated to Evidence- Services to Families of People Based With Psychiatric Disabilities Psychiatry Lisa Dixon, M.D., M.P.H. William R. McFarlane, M.D. Harriet Lefley, Ph.D. Alicia Lucksted, Ph.D. Michael Cohen, M.A. Ian Falloon, M.D. Kim Mueser, Ph.D. David Miklowitz, Ph.D. Phyllis Solomon, Ph.D. Diane Sondheimer, M.S., M.P.H.
Family psychoeducation is an evidence-based practice that has been amily members and other shown to reduce relapse rates and facilitate recovery of persons who persons involved in the lives have mental illness. A core set of characteristics of effective family Fand care of adults who have psychoeducation programs has been developed, including the provi- serious mental illnesses often pro- sion of emotional support, education, resources during periods of cri- vide emotional support, case man- sis, and problem-solving skills. Unfortunately, the use of family psy- agement, financial assistance, advo- choeducation in routine practice has been limited. Barriers at the lev- cacy, and housing to their mentally ill el of the consumer and his or her family members, the clinician and loved ones. Although serving in this the administrator, and the mental health authority reflect the exis- capacity can be rewarding, it impos- tence of attitudinal, knowledge-based, practical, and systemic obsta- es considerable burdens (1–4). Fam- cles to implementation. Family psychoeducation dissemination efforts ily members often have limited ac- that have been successful to date have built consensus at all levels, in- cess to the resources and informa- cluding among consumers and their family members; have provided tion they need (5–7). Research con- ample training, technical assistance, and supervision to clinical staff; ducted over the past decade has and have maintained a long-term perspective. (Psychiatric Services shown that patients’ outcomes im- 52:903–910, 2001) prove when the needs of family members for information, clinical guidance, and support are met. This research supports the development of evidence-based practice guide- lines for addressing the needs of family members. Dr. Dixon and Dr. Lucksted are affiliated with the Center for Mental Health Services Several models have evolved to ad- Research at the University of Maryland School of Medicine in Baltimore and with the De- dress the needs of families of per- partment of Veterans Affairs Capitol Health Care Network Mental Illness Research, Ed- sons with mental illness: individual ucation, and Clinical Center, 701 West Pratt Street, Room 476, Baltimore, Maryland
Psychiatric Services, Copyright (2001). American Association. consultation and family psychoedu- 21201 (e-mail, [email protected]). Dr. McFarlane is affiliated with the Maine cation conducted by a mental health Medical Center in Portland. Dr. Lefley is with the University of Miami School of Medi- professional (8,9), various forms of cine. Mr. Cohen is with the New Hampshire chapter of the National Alliance for the Mentally Ill in Concord. Dr. Falloon is with the University of Auckland in Auckland, more traditional family therapy (10), New Zealand. Dr. Mueser is with Dartmouth Medical School in Hanover, New Hamp- and a range of professionally led shire. Dr. Miklowitz is with the University of Colorado. Dr. Solomon is with the Uni- short-term family education pro- versity of Pennsylvania School of Social Work in Philadelphia. Ms. Sondheimer is with grams (11,12), sometimes referred the Child, Adolescent, and Family Branch of the Center for Mental Health Services in to as therapeutic education. Also Rockville, Maryland. available are family-led information
Reprinted with permission from the PSYCHIATRIC SERVICES ♦ July 2001 Vol. 52 No. 7 903
The Evidence 3 Review of Research Literature and support classes or groups, such clinic based, home, family practice, ♦ Provide training for the family in as those provided by the National Al- or other community settings—and structured problem-solving techniques. liance for the Mentally Ill (NAMI) the degree of emphasis on didactic, ♦ Encourage family members to (13,14). Family psychoeducation has cognitive-behavioral, and systemic expand their social support net- a deep enough research and dissem- techniques. works—for example, to participate in ination base to be considered an evi- Although the existing models of family support organizations such as denced-based practice. However, family intervention appear to differ NAMI. the term “psychoeducation” can be from one another, a strong consen- ♦ Be flexible in meeting the needs misleading: family psychoeducation sus about the critical elements of of the family. includes many therapeutic elements, family intervention emerged in 1999 ♦ Provide the family with easy ac- often uses a consultative framework, under the encouragement of the cess to another professional in the and shares characteristics with other leaders of the World Schizophrenia event that the current work with the types of family interventions. Fellowship (16). family ceases. In general, evidence-based prac- tices are clinical practices for which Goals and principles Overview of the research scientific evidence of improvement for working with families Studies have shown markedly higher in consumer outcomes has been con- The main goals in working with the reductions in relapse and rehospital- sistent (15). The scientific evidence family of a person who has a mental ization rates among consumers whose of the highest standard is the ran- illness are to achieve the best possible families received psychoeducation domized clinical trial. Often, several outcome for the patient through col- than among those who received stan- clinical trials are pooled by use of a laborative treatment and manage- dard individual services (17–20), with technique such as meta-analysis to ment and to alleviate the suffering of differences ranging from 20 to 50 identify evidence-based practices. the family members by supporting percent over two years. For programs Quasi-experimental studies, and to a them in their efforts to aid the recov- of more than three months’ duration, lesser extent open clinical trials, can ery of their loved one. the reductions in relapse rates were at also be used. However, the research Treatment models that have been the higher end of this range. In addi- evidence for an evidence-based supported by evidence of effective- tion, the well-being of family mem- practice must be consistent and suf- ness have required clinicians to ad- bers improved (21), patients’ partici- ficiently specific for the quality and here to 15 principles in working with pation in vocational rehabilitation in- outcome of the intervention to be families of persons who have mental creased (22), and the costs of care de- assessed. illness: creased (4,20,23,24). The purpose of this article, as part ♦ Coordinate all elements of treat As a result of this compelling evi- of a larger series on evidenced-based ment and rehabilitation to ensure that dence, the Schizophrenia Patient practices for persons with severe everyone is working toward the same Outcomes Research Team (PORT) mental illnesses (15), is to describe goals in a collaborative, supportive re- included family psychoeducation family psychoeducation, the basis for lationship. among its treatment recommenda- its identification as an evidence-based ♦ Pay attention to both the social tions. The PORT recommended that practice, and barriers to its imple- and the clinical needs of the consumer. all families who have contact with a mentation. We also propose strategies ♦ Provide optimum medication relative who has mental illness be of- for overcoming these barriers. management. fered a family psychosocial interven- ♦ Listen to families’ concerns and tion that spans at least nine months What is family psychoeducation? involve them as equal partners in the and that includes education about A variety of family psychoeducation planning and delivery of treatment. mental illness, family support, crisis programs have been developed by ♦ Explore family members’ expec- intervention, and problem solving mental health care professionals tations of the treatment program and (25). Other best-practice standards over the past two decades (8,9). expectations for the consumer. (26–28) have recommended that fam- These programs have been offered ♦ Assess the strengths and limita- ilies participate in education and sup- as part of an overall clinical treat- tions of the family’s ability to support port programs. In addition, an expert ment plan for individuals who have the consumer. panel that included clinicians from mental illness. They last nine months ♦ Help resolve family conflict by various disciplines as well as families, to five years, are usually diagnosis responding sensitively to emotional consumers, and researchers empha- specific, and focus primarily on con- distress. sized the importance of engaging sumer outcomes, although the well- ♦ Address feelings of loss. family members in the treatment and being of the family is an essential in- ♦ Provide relevant information for rehabilitation of persons who are termediate outcome. Family psy- the consumer and his or her family at mentally ill (29,30). choeducation models differ in their appropriate times. Delivering the appropriate compo- format—for example, multiple-fami- ♦ Provide an explicit crisis plan nents of family psychoeducation for ly, single-family, or mixed sessions— and professional response. patients and their families appears to the duration of treatment, consumer ♦ Help improve communication be an important determinant of out- participation, location—for example, among family members. comes for both consumers and their
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Review of Research Literature 4 The Evidence families. It has been demonstrated vention, the minimum ingredients A third knowledge gap involves the that programs do not reduce relapse are still not clear. This gap was high- relationship between family psychoe- rates if the information presented is lighted by a study of treatment strate- ducation and other programs. Since not accompanied by skills training, gies for schizophrenia, which found the conception of family psychoedu- ongoing guidance about management no significant difference in relapse cation, other psychosocial programs of mental illness, and emotional sup- rates between families who received a have developed a substantial eviden- port for family members (31). relatively intensive program—a sim- tiary base, including supported em- In addition, these interventions plified version of cognitive-behavioral ployment and assertive community that present information in isolation family intervention plus a multiple treatment (47,48). For example, as- tend to be brief: a meta-analysis of 16 family group—and those who re- sertive community treatment com- studies found that family interven- ceived a less intensive psychoeduca- bined with family psychoeducation tions of fewer than ten sessions had tional, or supportive, multiple-family has been associated with better non- no substantial effects on the burden group program (46). However, both competitive employment outcomes of family members (32). However, programs provided levels of support than assertive community treatment the number of sessions could not and education to families that far sur- alone (22). The combination of as- completely explain the differences in passed those provided by usual serv- sertive community treatment, family outcomes. The outcomes may have ices. It will be necessary to conduct psychoeducation, and supported em- been influenced by the total duration studies designed to identify the least ployment has been associated with of treatment rather than the number intensive and smallest effective better competitive employment out- of sessions, or by the individual ther- “dose” of family psychoeducation. comes than conventional vocational apist’s approach to dealing with the rehabilitation, although the contribu- emotional reactions of patients and tions of each component could not be their families. The behaviors and dis- assessed in that study (49). The op- ruptions associated with schizophre- portunities for family psychoeduca- nia, in particular, may require more Family tion to be combined with or com- than education to ameliorate the bur- pared with these new psychosocial den on the family and enhance con- psychoeducation models have not been fully explored. sumer outcomes. Fourth, research is needed to re- Most studies have evaluated family has a solid research base, fine the interventions so that they psychoeducation for schizophrenia or better address different types of fam- schizoaffective disorder only. Howev- and leaders in the field have ilies, different situations, and differ- er, the results of several controlled ent time points throughout the course studies support the benefits of both reached consensus on its of illness. For example, there is some single- and multiple-family interven- evidence that individualized consulta- tions for other psychiatric disorders, essential components tion may be more beneficial than including bipolar disorder (33–38), group psychoeducation for families major depression (39–41), obsessive- and techniques. who have existing sources of support compulsive disorder (42), anorexia or who already belong to a support nervosa (43), and borderline person- group (50–52). ality disorder (44). Gonzalez and col- Fifth, although family psychoedu- leagues (45) have extended this re- cation has been tested in a wide range search to deal with the secondary ef- of national and global settings, there fects of chronic physical illness. Second, increasing the sophistica- is still a need to assess modifications Family psychoeducation thus has a tion, variety, and scope of indicators in content and outcome among par- solid research base, and leaders in the that are used to measure “benefit” is ticular U.S. subcultures and in other field have reached consensus on the essential. Commonly used bench- countries. In the United States the essential components and techniques marks are subject to complicated in- one study involving Latino families of family psychoeducation. This form tervening variables and need to be had mixed results (53,54). However, of treatment should continue to be correlated with other results. For ex- studies in China (55–57) as well as recommended for use in routine ample, a greater number of hospital- studies that are under way among practice. However, several important izations for a mentally ill person dur- Vietnamese refugees living in Aus- gaps remain in the knowledge re- ing the year after family psychoedu- tralia have had results comparable to quired to make comprehensive evi- cation could be a positive sign if it in- those of studies conducted in Cau- dence-based practice recommenda- dicates that a previously neglected casian populations. tions and to implement them with a consumer is getting care and that the Finally, what happens after a family wide variety of families. family is getting better at identifying has completed a psychoeducation First, although the members of the prodromal symptoms that indicate an program? Families of consumers with World Schizophrenia Fellowship and impending relapse (4). The well-be- long-term problems and disability others have delineated the core com- ing and health of the family should be may need ongoing support and en- ponents of a successful family inter- routinely measured as well. hanced problem-solving skills to deal
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The Evidence 5 Review of Research Literature with the vicissitudes of illness. Lefley ing that there is psychiatric illness in and typical agency practices, insuffi- (58) has described ad hoc psychoedu- their family and airing their problems cient resources, and inadequate at- cation in informal settings, such as an in a public setting. They may have tention to human dynamics at the ongoing family support group con- had negative experiences in the past system level. For example, reason- ducted through a medical center. Mc- and be hesitant to expose themselves able concerns about confidentiality Farlane (4,59) has used a usually to the possibility of further negative may be seen as roadblocks to family open-ended multiple-family group experiences. Most people have not involvement rather than as opportu- structure. NAMI’s Family-to-Family had access to information about the nities to create useful innovations program is limited to 12 sessions of value of family psychoeducation and (65). Similar barriers to implementa- formal education but offers continu- so may not appreciate the potential tion of family treatment approaches ity in the NAMI support and educa- utility of these programs (16). They have been identified in studies in tional group structure (14). may believe that nothing will help. Italy (66). Consumers may have similar appre- Mental health professionals have Barriers to implementation hensions and may worry about losing also expressed concern about the cost Despite the gaps in the research, the the confidential relationship with and duration of structured family extensive documentation of the basic their treatment teams or about losing psychoeducation programs (67), even benefits of family psychoeducation autonomy. though medication and case manage- prompts the question of why this ment services for clients usually have service is rarely offered. In general, Clinicians and to be continued for much longer pe- low levels of contact between clinical program administrators riods than family programs. The lack staff and family members in public The lack of availability of family psy- of reimbursement for sessions with and community-based settings may choeducation may reflect an under- families that do not involve the men- preclude the more substantial educa- appreciation on the part of mental tally ill relative—a characteristic of tional or support interventions. Also, health care providers of the utility many family psychoeducation pro- the availability of any intervention is and importance of this treatment ap- grams—is a significant disincentive limited by the availability of people to proach (16,18,31,50). Providers may to providing such services. Caseloads provide it and the training necessary choose medication over psychosocial are universally high, and staff’s time to equip those people. The requisite interventions, and family involve- is stretched thin. Therefore devoting clinicians, resources, time, and reim- ment may seem superfluous. In addi- substantial human resources to train- bursement have not been forthcom- tion, some providers may still adhere ing, organizing, leading, and sustain- ing. These deficits imply the exis- to theories that blame family dynam- ing family psychoeducation is seen as tence of larger obstacles related to at- ics for schizophrenia. Bergmark (62) a luxury (16). In such an atmosphere, titudes, knowledge, practicality, and noted the persistence of psychody- horizons tend to be short. The long- systems. namic theories as a potential barrier, term payoff of fewer crises and hos- because many families perceive these pitalizations and lower total costs of Consumers and family members theories as blaming. The findings on treatment is overshadowed by imme- Implementation of family psychoedu- expression of emotion—the original diate organizational crises or short- cation may be hindered by realities in basis for family psychoeducation— term goals (16). the lives of potential participants. are often perceived similarly despite Practical impediments such as trans- researchers’ attempts to avoid imply- Mental health authorities portation problems and competing ing blame (16,50). At the health-system level, pressures demands for time and energy are Although the knowledge and un- to focus on outcomes, cost-effective- common (50). If family members per- derlying assumptions of individuals ness, and customer satisfaction seem ceive that the training provided are important, they are only part of in principle to favor the widespread through family psychoeducation in- the picture. Wright (63) found that adoption of family information and volves expectations of additional care- job and organizational factors were support interventions. However, oth- giving responsibilities, they may stay much better predictors of the fre- er tenets of the current health care away (16). Sessions must be sched- quency of mental health profession- environment—such as the emphasis uled during periods when facilitators als’ involvement with families than on short-term cost savings, technical are available, but these times may not were professionals’ attitudes. The rather than human-process-oriented suit the clients and their families. clinician’s work schedule and profes- remedies, and individual patholo- Family members face significant bur- sional discipline were the strongest gy—discourage clinicians from pro- dens that may pose barriers to attend- predictors, but other organizational viding such services, which may be ing family psychoeducation sessions, factors posed barriers as well. Dis- viewed as ancillary. At this level, it even though attendance could lighten semination of the multiple-family seems that the evidence for family these burdens (60,61). psychoeducation group model devel- psychoeducation has not been ac- In addition, stigma is common— oped by McFarlane and colleagues cepted. Many of the consumer- and family members may not want to be (64,59) has been hindered by a pauci- program-level impediments we have identified with psychiatric facilities. ty of programmatic leadership, con- mentioned are paralleled in the larg- They may feel uncomfortable reveal- flicts between the model’s philosophy er administrative systems: lack of
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Review of Research Literature 6 The Evidence awareness of evidence, ingrained as- Illinois had dramatically different studies have shown that on the sumptions about how care should be outcomes, partly because NAMI’s whole, knowledge about empirical structured, and inadequate re- Maine chapter provided strong for- advantages of family psychoeduca- sources. mal support for the effort in that tion, such as reductions in relapse state, whereas the effort in Illinois and rehospitalization rates, carry al- Overcoming barriers did not involve NAMI’s Illinois chap- most no weight in convincing work- to implementation ters (73). ing clinicians to change their atti- Research on technology transfer has Experience and now some empiri- tudes toward families and adopt new identified four fundamental condi- cal data illustrate the need to include clinical practices (73). tions that must be met for change to consumers and their families in ef- Consensus building among agency occur at the individual or system lev- forts to disseminate family psychoed- staff and directors—including a wide el: dissemination of knowledge, eval- ucation. The tension often encoun- range of concerned parties—in a uation of programmatic impact, tered between some consumer advo- process of planning from the bottom availability of resources, and efforts cacy groups and family advocacy or- up is critical but must be tailored to to address the human dynamics of re- ganizations can be bridged by em- address local operational barriers and sisting change (68). Implementation phasizing the complementarity of the contrary beliefs. In addition, success- strategies must include clear, wide- outcomes in family work: as con- ful implementation of family psy- spread communication of the models sumers’ symptoms are alleviated and choeducation has required ongoing and of their benefits to all stakehold- their functioning improves, their supervision, operational consulta- ers. This communication must occur families become more engaged in tion, and general support. In a sense, through channels that are accessible and satisfied with community life, these characteristics help to build and acceptable to the various stake and both the family burden and med- consensus on an ongoing basis. For holders (16), including families, con- ical illness decrease (22,74,75). example, the PORT found that it was sumers, providers, administrators, possible to change current practice and policy makers. It must be accom- Clinicians and by providing a high level of technical panied by advocacy, training, and su- program administrators assistance and a supportive environ- pervision or consultation initiatives to Among professionals working in ment that reflected staff agreement raise awareness and support at all or- community mental health services, with the principles and philosophy of ganizational levels (69). awareness and evidence, although the new program (67). The recent necessary, are often not sufficient for dissemination of a family psychoedu- The consumer and family members adoption of new programs. Although cation program in Los Angeles Coun- At the level of the individual con- interventions must adhere to param- ty succeeded because of the persist- sumer and members of his or her eters of the family psychoeducation ent advocacy of the local NAMI family, effective treatment models model if good client and family out- group, the support of top manage- include strategies for overcoming comes are to be achieved, they also ment, a nine-month training period, barriers to participation, such as have to be responsive to local organi- the high aptitude and strong commit- stigma and a sense of hopelessness. zational and community cultures. ment of the trainees, and the skill of Such strategies include offering to Engagement and implementation the trainer (72). hold sessions in the home of the strategies, as well as the interventions client or family member; helping themselves, must be tailored to local Mental health authorities family members understand that the and cultural characteristics, workload and government intervention is designed to improve and other stresses faced by clinicians Although it is tempting to assume the lives of everyone in the family, and agencies, particular diagnoses, that implementation of family psy- not just the patient; being flexible relationships, the duration of illness choeducation could be mandated about scheduling family meetings; and disability, and whether the client centrally by state mental health au- and providing education during the is currently receiving medical treat- thorities, experience suggests that a engagement process to destigmatize ment (50,76,77). more complex approach is required. mental illness and engender hope Perhaps even more critical to the Dissemination of a family psychoed- (70,71). adoption of family psychoeducation ucation program in New York State Recent efforts to disseminate fam- is the need to match both administra- succeeded partly because of a part- ily psychoeducation in New York tive support and expectations for evi- nership between the state, the NAMI State, Los Angeles, Maine, and Illi- dence-based practice with a rationale affiliate, and an academic center. Un- nois have illustrated clearly the im- and explication of the advantages of fortunately, the state’s mental health portance of including clients and this treatment approach that are authority abruptly terminated this their families in the planning, adapta- meaningful to clinicians. Advantages large dissemination program before a tion, and eventual implementation of can include avoidance of crises, more widespread impact could be made. family psychoeducation (72). In New efficient case management, gratitude Maine’s recent success was initiated York, dissemination was initiated and from families and consumers, and a by a state trade association of mental sponsored by the state NAMI chap- more interesting, invigorating work health centers and services, with sup- ter (73). Dissemination in Maine and environment for clinicians. Recent port from but little involvement by
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The Evidence 7 Review of Research Literature the state mental health authority, currently available in 41 states, many partnerships between the two strate- which recently began exploring a for- of which have waiting lists. FFEP gies. For example, family psychoedu- mal partnership to continue and and other mutual-assistance family cation programs have used FFEP deepen this largely successful effort. programs are organized and led by teachers as leaders, and participation A simultaneous effort in Illinois, ini- trained volunteers from families of in FFEP has facilitated eventual par- tiated by the state authority but dis- persons who have mental illness. ticipation in family psychoeducation. tinctly lacking consensus among cen- These community programs are of- ter directors or the state NAMI chap- fered regardless of the mentally ill Conclusions ter, has been less successful (73). person’s treatment status. They tend The efficacy and effectiveness of One state that has had some success to be brief—for example, 12 weeks family psychoeducation as an evi- is New Jersey, which was able to dis- for FFEP—and mix families of per- dence-based practice have been es- seminate family psychoeducation by sons with various diagnoses, although tablished. To date, the use of family setting expectations and require- they focus on persons with schizo- psychoeducation in routine clinical ments at the state level. phrenia or bipolar disorder. On the practice is alarmingly limited. Re- With the exception of the New Jer- basis of a trauma-and-recovery mod- search has recently begun to develop sey effort, experience suggests that el of a family’s experience in coping dissemination interventions targeted the most promising strategy is one in with mental illness, FFEP merges at the programmatic and organiza- which provider organizations take education with specific support tional levels, with some success. On the initiative with support from con- mechanisms to help families through going research must continue to de- sumer and family organizations, the the various stages of comprehending velop practical and low-cost strate- state mental health authority, and the and coping with a family member’s gies to introduce and sustain family key insurance payers. Appropriate mental illness (14). The program fo- psychoeducation in typical practice reimbursement for family psychoed- cuses first on outcomes of family settings. Basic research that identi- ucation will follow. Experience also members and their well-being, al- fies the barriers to implementing suggests that several years of consis- though benefits to the patient are family psychoeducation in various tent effort and ongoing monitoring also considered to be important (50). clinical settings is also needed—for are required for success. Fortunately, Uncontrolled research on FFEP example, the impact of clinicians’ at- this process is not necessarily an ex- and its predecessor, Journey of Hope, titudes, geographic factors, funding, pensive one: Maine implemented its suggests that the program increases disconnection of patients from family family psychoeducation program in the participants’ knowledge about members, and stigma—as well as the more than 90 percent of agencies for the causes and treatment of mental extent to which variations in these about 25 cents per capita over four illness, their understanding of the factors mediate the outcomes of edu- years, including evaluation costs. The mental health system, and their well- cational interventions. principal costs are in human effort, being (13). In a prospective, natura- Dissemination could also be facili- especially the effort required to over- listic study, FFEP participants re- tated by further exploring the inte- come resistance to change. ported that they had significantly less gration of family psychoeducation Delivery of services to families displeasure and concern about mem- with psychosocial interventions— must be subject to accountability and bers of their family who had mental such as assertive community treat- tracking. Although many states en- illness and significantly more em- ment, supported employment, and courage the delivery of services to powerment at the family, community, social skills training—and other evi- families, few monitor such services or and service-system levels after they dence-based cognitive-behavioral strat- make funding contingent on the serv- had completed the program (83). egies for improving the treatment ices being delivered (78). One sys- Benefits observed at the end of the outcomes of persons with mental ill- tem-level option is for mental health program had been sustained six ness. Promising efforts have com- centers to create a position for an months after the intervention. Pre- bined the energy, enthusiasm, and adult family intervention coordinator, liminary results from a second ongo- expertise of grassroots family organi- who would serve as the contact per- ing study with a waiting-list control zations such as NAMI with profes- son for interventions, facilitate com- design have revealed similar findings. sional and clinical programs. ♦ munication between staff and fami- Although FFEP currently lacks lies, supervise clinicians, and monitor rigorous scientific evidence of effica- References fidelity (79). cy in improving clinical or functional 1. Cochrane JJ, Goering PN, Rogers JM: The outcomes of persons who have men- mental health of informal caregivers in On- tario: an epidemiological survey. American Family-to-Family tal illness, it shows considerable Journal of Public Health 87:2002–2008, Education Program promise for improving the well-being 1997 In the absence of family psychoedu- of family members. In recent re- 2. Leff J: Working with the families of schizo- cation programs, voluntary peer-led search and practice, attempts have phrenic patients. British Journal of Psychi- family education programs have de- been made to optimize the clinical atry Supplement 23(Apr):71–76, 1994 veloped, epitomized by NAMI’s opportunities provided by family psy- 3. Schene AH, van Wijngaarden B, Koeter MWJ: Family caregiving in schizophrenia: Family-to-Family Education Pro- choeducation and peer-based pro- domains and distress. Schizophrenia Bul- gram (FFEP) (14,80–82). FFEP is grams such as FFEP by developing letin 24:609–618, 1998
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Review of Research Literature 8 The Evidence 4. McFarlane WR, Lukens EP, Link B, et al: schizophrenia: the adjustment family unit. Canadian Journal of Psychiatry 42(suppl Multiple-family groups and psychoeducation British Journal of Psychiatry 147:156–163, 2):74S-78S, 1997 in the treatment of schizophrenia. Archives 1985 of General Psychiatry 52:679–687, 1995 37. Miklowitz DJ, Simoneau TL, George EL, 22. McFarlane WR, Dushay R, Statsny P, et al: et al: Family-focused treatment of bipolar 5. Adamec C: How to Live With a Mentally Ill A comparison of two levels of family-aided disorder: one-year effects of a psychoedu- Person. New York, Wiley, 1996 assertive community treatment. Psychiatric cational program in conjunction with phar- Services 47:744–750, 1996 macotherapy. Biological Psychiatry 6. Marsh DT, Johnson DL: The family experi- 48:582–592, 2000 ence of mental illness: implications for in- 23. Cardin VA, McGill CW, Falloon IRH: An tervention. Professional Psychology: Re- economic analysis: costs, benefits, and ef- 38. Simoneau TL, Miklowitz DJ, Richards JA, search and Practice 28:229–237, 1997 fectiveness, in Family Management of et al: Bipolar disorder and family communi- Schizophrenia. Edited by Falloon IRH. cation: the effects of a psychoeducational 7. Marsh DT: Families and Mental Illness: Baltimore, Johns Hopkins University Press, treatment program. Journal of Abnormal New Directions in Professional Practice. 1986 Psychology 108:588–597, 1999 New York, Praeger, 1992 24. Tarrier N, Lowson K, Barrowclough C: 39. Emanuels-Zuurveen L, Emmelkamp PM: 8. Anderson CM, Reiss DJ, Hogarty GE: Some aspects of family interventions in Individual behavioural-cognitive therapy: Schizophrenia and the Family. New York, schizophrenia: II. financial considerations. V. marital therapy for depression in marital- Guilford, 1986 British Journal of Psychiatry 159:481–484, ly distressed couples. British Journal of Psy- chiatry 169:181–188, 1996 9. Falloon IRH, Boyd JL, McGill CW: Family 1991 Care of Schizophrenia: A Problem-Solving 25. Lehman AF, Steinwachs DM: At issue: 40. Emanuels-Zuurveen L, Emmelkamp PM: Approach to the Treatment of Mental Ill- translating research into practice: the Spouse-aided therapy with depressed pa- ness. New York, Guilford, 1984 Schizophrenia Patient Outcomes Research tients. Behavior Modification 21:62–77, 1997 10. Marsh DT: A Family-Focused Approach to Team (PORT) treatment recommenda- 41. Leff JL, Vearnals S, Brewin CR, et al: The Serious Mental Illness: Empirically Sup- tions. Schizophrenia Bulletin 24:1–9, 1998 London Depression Intervention Trial: ported Interventions. Sarasota, Fla, Profes- 26. American Psychiatric Association Practice randomised controlled trial of antidepres- sional Resource Press, 2001 Guidelines for the Treatment of Schizo- sants v couple therapy in the treatment and maintenance of people with depression liv- 11. Mannion E: Training Manual for the Im- phrenia. Washington, DC, American Psy- ing with a partner: clinical outcome and plementation of Family Education in the chiatric Association, 1997 costs. British Journal of Psychiatry 177:95– Adult Mental Health System of Berks 27. Treatment of schizophrenia: the expert 100, 2000 County, PA. Philadelphia, University of consensus panel for schizophrenia. Journal Pennsylvania Center for Mental Health of Clinical Psychiatry 57(suppl 12B):3–58, 42. Van Noppen B: Multi-family behavioral Policy and Services Research, 2000 1996 treatment (MFBT) for OCD crisis inter- vention and time-limited treatment. Crisis 12. Amenson C: Schizophrenia: A Family Edu- 28. Weiden PJ, Scheifler PL, McEvoy JP, et al: Intervention and Time-Limited Treatment cation Curriculum. Pasadena, Calif, Pacific Expert consensus treatment guidelines for 5:3–24, 1999 Clinics Institute, 1998 schizophrenia: a guide for patients and 43. Geist R, Heinmaa M, Stephens D, et al: families. Journal of Clinical Psychiatry 13. Pickett-Schenk SA, Cook JA, Laris A: Jour- Comparison of family therapy and family 60(suppl 11):73–80, 1999 ney of Hope program outcomes. Commu- group psychoeducation in adolescents with nity Mental Health Journal 36:413–424, 29. Coursey RD, Curtis L, Marsh D, et al: anorexia nervosa. Canadian Journal of Psy- 2000 Competencies for direct service staff mem- chiatry 45:173–178, 2000 bers who work with adults with severe 14. Burland JF: Family-to-Family: a trauma 44. Gunderson JG, Berkowitz C, Ruizsancho mental illness in outpatient public mental and recovery model of family education. A: Families of borderline patients: a psy- health managed care systems. Psychiatric New Directions for Mental Health Ser- choeducational approach. Bulletin of the Rehabilitation Journal 23:370–377, 2000 vices, no 77:33–44, 1998 Menninger Clinic 61:446–457, 1997 15. Drake RE, Goldman HH, Leff HS, et al: 30. Coursey RD, Curtis L, Marsh D, et al: 45. Gonzalez S, Steinglass P, Reiss D: Putting Implementing evidence-based practices in Competencies for direct service staff mem- the illness in its place: discussion groups for routine mental health service settings. Psy- bers who work with adults with severe families with chronic medical illnesses. chiatric Services 52:179–182, 2001 mental illness: specific knowledge, atti- Family Process 28:69–87, 1989 tudes, skills, and bibliography. Psychiatric 16. Families as Partners in Care: A Document Rehabilitation Journal 23:378–392, 2000 46. Schooler NR, Keith SJ, Severe JB, et al: Re- Developed to Launch a Strategy for the lapse and rehospitalization during mainte- Implementation of Programs of Family Ed- 31. Greenberg JS, Greenley JR, Kim HW: The nance treatment of schizophrenia: the ef- ucation, Training, and Support. Toronto, provision of mental health services to fami- fects of dose reduction and family treat- World Schizophrenia Fellowship, 1998 lies of persons with serious mental illness. ment. Archives of General Psychiatry Research in Community and Mental 54:453–463, 1997 17. Penn LD, Mueser KT: Research update on Health 8:181–204, 1995 the psychosocial treatment of schizophre- 47. Stein LL, Santos AB: Assertive Community nia. American Journal of Psychiatry 153: 32. Cuijpers P: The effects of family interven- Treatment of Persons With Severe Mental 607–617, 1996 tions on relatives’ burden: a meta-analysis. Illness. New York, Norton, 1998 Journal of Mental Health 8:275–285, 1999 18. Dixon LB, Lehman AF: Family interven- 48. Bond GR, Becker DR, Drake RE, et al: Im- tions for schizophrenia. Schizophrenia Bul- 33. Clarkin JF, Carpenter D, Hull J, et al: Ef- plementing supported employment as an letin 21:631–643, 1995 fects of psychoeducational intervention for evidenced-based practice. Psychiatric Ser- married patients with bipolar disorder and vices 52:313–322, 2001 19. Lam DH, Kuipers L, Leff JP: Family work their spouses. Psychiatric Services with patients suffering from schizophrenia: 49:531–533, 1998 49. McFarlane WR, Dushay RA, Deakins S, et the impact of training on psychiatric nurses’ al: Employment outcomes in family-aided attitude and knowledge. Journal of Ad- 34. Miklowitz D, Goldstein M: Bipolar Disor assertive community treatment. American vanced Nursing 18:233–237, 1993 der: A Family-Focused Treatment Ap- Journal of Orthopsychiatry 70:203–214, proach. New York, Guilford, 1997 2000 20. Falloon IRH, Held T, Coverdale JH, et al: Psychosocial interventions for schizophre- 35. Moltz D: Bipolar disorder and the family: 50. Solomon P: Moving from psychoeducation nia: a review of long-term benefits of inter- an integrative model. Family Process to family education for families of adults national studies. Psychiatric Rehabilitation 32:409–423, 1993 with serious mental illness. Psychiatric Ser- Skills 3:268–290, 1999 vices 47:1364–1370, 1996 36. Parikh SV, Kusumakar V, Haslam DR, et al: 21. Falloon IRH, Pederson J: Family manage- Psychosocial interventions as an adjunct to 51. Solomon P, Draine JE, Mannion E: The im- ment in the prevention of morbidity of pharmacotherapy in bipolar disorder. pact of individualized consultation and
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The Evidence 9 Review of Research Literature group workshop family education interven- 66. Falloon IRH, Casacchia M, Lussetti M, et Management of negative symptoms among tions on ill relative outcomes. Journal of Ner- al: The development of cognitive-behav- patients with schizophrenia attending mul- vous and Mental Disease 184:252–255, 1996 ioural therapies within Italian mental tiple-family groups. Psychiatric Services health services. International Journal of 51:513–519, 2000 52. Solomon P, Draine J, Mannion E, et al: Ef- Mental Health 28:60–67, 1999 fectiveness of two models of brief family 76. Guarnaccia P, Parra P: Ethnicity, social sta- education: retention of gains by family 67. Dixon L, Lyles A, Scott J, et al: Services to tus, and families’ experiences of caring for a members of adults with serious mental ill- families of adults with schizophrenia: from mentally ill family member. Community ness. American Journal of Orthopsychiatry treatment recommendations to dissemina- Mental Health Journal 32:243–260, 1996 67:177–186, 1997 tion. Psychiatric Services 50:233–238, 1999 77. Jordan C, Lewellen A, Vandiver V: Psy- 53. Cañive JM, Sanz-Fuentenebro J, Vazquez 68. Backer T: Drug Abuse Technology Trans- choeducation for minority families: a social- C, et al: Family psychoeducational support fer. Rockville, Md, National Institute on work perspective. International Journal of groups in Spain: parents’ distress and bur- Drug Abuse, 1991 Mental Health 23(4):27–43, 1995 den at nine-month follow-up. Annals of 69. McFarlane WR: Multiple-family groups Clinical Psychiatry 8:71–79, 1996 78. Dixon L, Goldman HH, Hirad A: State pol- and psychoeducation in the treatment of icy and funding of services to families of 54. Telles C, Karno M, Mintz J, et al: Immi- schizophrenia. New Directions for Mental adults with serious and persistent mental ill- grant families coping with schizophrenia: Health Services, no 62:13–22, 1994 ness. Psychiatric Services 50:551–552, 1999 behavioral family intervention v case man- 70. Mueser KT, Glynn SM: Behavioral Family agement with a low-income Spanish-speak- 79. Mueser KT, Fox L: Family-friendly servic- Therapy for Psychiatric Disorders. Oak- es: a modest proposal [letter]. Psychiatric ing population. British Journal of Psychia- land, Calif, New Harbinger, 1999 try 167:473–479, 1995 Services 51:1452, 2000 71. Tarrier N: Some aspects of family interven- 80. Solomon P, Draine J, Mannion E: The im- 55. Xiang MG, Ran MS, Li SG: A controlled tions in schizophrenia: I. adherence to in- evaluation of psychoeducational family in- pact of individualized consultation and tervention programmes. British Journal of group workshop family education interven- tervention in a rural Chinese community. Psychiatry 159:475–480, 1991 British Journal of Psychiatry 165:544–548, tions in ill relative outcomes. Journal of Ner- 1994 72. Amenson CS, Liberman RP: Dissemina vous and Mental Disease 184:252–255, 1996 tion of educational classes for families of 81. Solomon P, Draine J, Mannion E, et al: Im- 56. Xiong W, Phillips MR, Hu X, et al: Family- adults with schizophrenia. Psychiatric Ser- pact of brief family psychoeducation on based intervention for schizophrenic pa- vices 52:589–592, 2001 tients in China: a randomized controlled self-efficacy. Schizophrenia Bulletin 22:41– trial. British Journal of Psychiatry 165:239– 73. McFarlane WR, McNary S, Dixon L, et al: 50, 1996 Predictors of dissemination of family psy- 247, 1994 82. Solomon P: Interventions for families of in- choeducation in community mental health dividuals with schizophrenia: maximizing 57. Zhang M, Wang M, Li J, et al: Randomized- centers in Maine and Illinois. Psychiatric outcomes for their relatives. Disease Man- control trial of family intervention for 78 Services, 52:935–942, 2001 first-episode male schizophrenic patients: agement and Health Outcomes 8:211–221, an 18-month study in Suzhou, Jiangsu. 74. Falloon IRH, Falloon NCH, Lussetti M: 2000 Integrated Mental Health Care: A Guide British Journal of Psychiatry 165(suppl 24): 83. Dixon L, Stewart B, Burland J, et al: Pilot 96–102, 1994 book for Consumers. Perugia, Italy, Opti- mal Treatment Project, 1997 study of the effectiveness of the Family-to- 58. Lefley HP: Impact of mental illness on Family Education Program. Psychiatric families and carers, in Textbook of Com- 75. Dyck DG, Short RA, Hendry M, et al: Services 52:965–967, 2001 munity Psychiatry. Edited by Thornicroft G, Szmukler G. London, Oxford University Press, 2001 59. McFarlane WR, Dunne E, Lukens E: From research to clinical practice: dissemi- nation of New York State’s family psychoe- ducation project. Hospital and Community Psychiatry 44:265–270, 1993 60. Gallagher SK, Mechanic D: Living with the mentally ill: effects on the health and func- tioning of other household members. Social Science and Medicine 42:1691–1701, 1996 61. Mueser KT, Webb C, Pfeiffer M, et al: Family burden of schizophrenia and bipo- lar disorder: perceptions of relatives and professionals. Psychiatric Services 47:507– 511, 1996 62. Bergmark T. Models of family support in Sweden: from mistreatment to understand- ing. New Directions in Mental Health Ser- vices 62:71–77, 1994 63. Wright ER: The impact of organizational factors on mental health professionals’ in- volvement with families. Psychiatric Ser- vices 48:921–927, 1997 64. Dixon L, McFarlane W, Hornby H, et al: Dissemination of family psychoeducation: the importance of consensus building. Schizophrenia Research 36:339, 1999 65. Bogart T, Solomon P: Procedures to share treatment information among mental health providers, consumer, and families. Psychiatric Services 50:1321–1325, 2000
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Review of Research Literature 10 The Evidence The Evidence
Selected Bibliography
Literature reviews
Drake, R. E., Merrens, M. R., & n Contains a chapter for each of five Lynde, D. W. (2005). Evidence-based evidence-based practices and provides mental health practice: A textbook, New historical background, practice York: WW Norton. principles, and an introduction to implementation. Vignettes n Introduces readers to the concepts highlight the experiences of staff and and approaches of evidence- consumers. based practices for treating severe mental illnesses. n Is an excellent, readable primer for the Evidence-Based Practices KITs. n Describes the importance of research in intervention science and the evolution of evidence-based practices.
The Evidence 11 Selected Bibliography McFarlane, W. R. (2002). Multifamily groups in Resources for family intervention the treatment of severe psychiatric disorders. coordinators and mental health New York: Guilford. authorities Miklowitz, D. J., & Goldstein, M. (1997). Bipolar Anderson, C. M., Griffin, S., Ross, I. A., disorder: A family-focused treatment approach. Pagonis, I., Holder, D. P., & Treiber, R. (1986). New York: Guilford Press. A comparative study of the impact of education vs. process groups for families of patients with Additional resources for affective disorders. Family Process, 25, 185-205. practitioners Batalden, P. B., & Stoltz, P. K. (1993). A framework for the continual improvement of healthcare: Amenson, C. (1998). Schizophrenia: A family Building and applying professional and education curriculum. Pasadena, CA: Pacific improvement knowledge to test changes in daily Clinics Institute. work. The Joint Commission Journal on Quality Provides 150 slides with lecture notes for Improvement, 19, 424-445. conducting educational workshops for families Falloon, I. R. H., McGill, C. W., & Boyd, J. L. who have a relative with schizophrenia. Includes (1992). Family management in the prevention information about the illness, medication, of morbidity in schizophrenia: Social outcome psychosocial treatments, and the role of the of a two-year longitudinal study. Psychological family in promoting recovery. Medicine, 17, 59-66. Amenson, C. (1998). Schizophrenia: Family McFarlane, W. R., Dushay, R. A., Deakins, S. M., education methods. Pasadena, CA: Pacific Stastny, P., Lukens, E. P., Toran, J., et al. (2000). Clinics Institute. Employment outcomes in family-aided Assertive Community Treatment. American Journal of A companion handbook to Schizophrenia: A Orthopsychiatry, 70, 203-214. Family Education Curriculum. Provides guidance on forming a class, optimizing learning for families, and dealing with typical problems that Essential reading for practitioners arise in conducting educational workshops.
The following four books are recommended for Kuipers, E., Leff, J. & Lam, D. (2002). Family those who want to master this approach. The first is work for schizophrenia: A practical guide. especially helpful for practitioners offering FPE in London: Gaskill. the single-family format. The third reference is recommended for practitioners facilitating Linehan, M. (1993). Cognitive-behavioral multifamily groups. treatment of borderline personality disorder. New York: Guilford. Anderson, C., Hogarty, G., & Reiss, D. (1986). Mueser, K. T., & Glynn, S. (1999). Behavioral Schizophrenia and the family. New York: family therapy for psychiatric disorders. Guilford Press. Oakland, CA: New Harbinger Publications. Falloon, I., Boyd, J., & McGill, C. (1984). Family care of schizophrenia. New York: Guilford Press.
Selected Bibliography 12 The Evidence Silver, D. (1992). A Parent’s guide to wills and Psychopharmacology trusts. Los Angeles, CA: Adams-Hall. Gorman, J. (1995). The essential guide to Provides financial planning suggestions for psychiatric drugs. New York: St. Martin’s Press. parents of adults with mental illnesses. Profiles individual medications in easy-to- understand terms. Solomon, P., Mannion, E., Marshall, T., & Farmer, J. (2001). Social workers as consumer Lickey, M., & Gordon, B. (1991). Medicine and and family consultants. In K. Bentley (Ed.), mental illness. New York: W. H. Freeman. Social work practice in mental health: Contemporary roles, tasks, and techniques Presents principles of diagnosis, neurophysiology, (pp. 230–253). Pacific Grove, CA: Brooks/Cole and psychopharmacological treatment of mental Publishing Co. illnesses. Describes why psychopharmacology exists and how it works. Provides a model Release of Information form for sharing information with families on an ongoing basis. Special topics Wrobleski, A. (1991). Suicide survivors: A Manoleas, P. (Ed.) (1996). The cross-cultural guide for those left behind. Minneapolis, MN: practice of clinical case management in mental Afterwords Publishing. health. Binghamton, NY: Haworth Press. Offers coping strategies to families who have had Presents a collection of articles about the roles a relative commit suicide. of gender, ethnicity, and acculturation in seeking treatment and response. Gives guidelines for engaging and intervening with specific ethnic and Resources for families diagnostic groups in varying treatment contexts. Adamec. C. (1996). How to live with a mentally Russell, L. M., & Grant, A. E. (1995). Planning for ill person: A handbook of day-to-day strategies. the future: Providing a meaningful life for a child New York: John Wiley and Sons. with a disability after your death. Evanston, IL: This comprehensive, easy-to-read book, written American Publishing Company. by a parent, reviews methods for accepting Russell, L. M., & Grant, A. E. (1995). The life illness, dealing with life issues, developing coping planning workbook: A hands-on guide to strategies, negotiating the mental health system, help parents provide for the future security and more. and happiness of their child with a disability after their death. Evanston, IL: American Keefe, R., & Harvey, P. (1994). Understanding Publishing Company. schizophrenia: A guide to the new research on causes and treatment. New York: The Offers guidance to parents on providing for the Free Press. future security of adults with mental illnesses. Describes research and presents the science of schizophrenia in understandable terms.
The Evidence 13 Selected Bibliography Marsh, D., & Dickens, R. (1997). Troubled Duke, P., & Hochman, G. (1992). A brilliant journey: Coming to terms with the mental madness: Living with manic depressive illness. illness of a sibling or parent. New York: New York: Bantam Books. Tarcher/Putnam. Combines personal experience with clinical Written for siblings and adult children of people information to describe manic depression in with mental illnesses. Discusses the impact of understandable terms and gives guidelines for mental illnesses on childhood. coping with it.
Mueser, K., & Gingerich, S. (1994). Coping with Hyland, B. (1986). The girl with the crazy schizophrenia: A guide for families. Oakland, brother. London: Franklin Watts. CA: New Harbinger Publications. Written for adolescents. Offers a comprehensive guide to living with schizophrenia. Provides practical advice on Jamison, K. R. (1995). An Unquiet Mind. New topics including medication, preventing relapse, York: Alfred A. Knopf, Inc. communication, family rules, drug use, and A compelling and emotional account of author’s planning for the future. Includes forms and awareness, denial, and acceptance of her bipolar worksheets for solving typical problems. disorder. It offers readers hope for recovery.
Torrey, E. F. (1995). Surviving schizophrenia: Riley, J. (1984). Crazy quilt. New York: A family manual (3rd ed.) New York: Harper William Morrow. & Row. Fictional account of a 13-year-old girl whose mother has schizophrenia. Written for children First-person accounts and adolescents. Devesch, A. (1992). Tell me I’m here: One family’s experience with schizophrenia. New Sheehan, S. (1982). Is there no place on earth for York: Penguin. me? New York: Houghton-Mifflin. A United Nation’s Media Peace Prize winner and Describes the experience of living with founder of Schizophrenia Australia describes her schizophrenia. Provides information about family’s experience. legal, funding, and treatment issues. Won the Pulitzer Prize. Dickens, R., & Marsh, D. (1994). Anguished voices: Siblings and adult children of persons Schiller, L., & Bennett, A. (1994). The quiet room: with psychiatric disabilities. Boston, MA: A journey out of the torment of madness. New Center for Psychiatric Rehabilitation. York: Warner Books. Collection of eight stories describing the impact Wasow, M. (1995). The skipping stone: Ripple of mental illnesses on siblings and children. Deals effects of mental illness on the family. Palo Alto, with the issues across the life span that must be CA: Science and Behavior Books. addressed when someone grows up with mental illness in the family.
Selected Bibliography 14 The Evidence Self-help Videotapes
Burns, D. (1989). The feeling good handbook. Amenson, C. S. Exploring schizophrenia. New York: Penguin. Produced by the California Alliance for the Mentally Ill. (Available from the California Self-help book presents a rationale for cognitive Alliance for the Mentally Ill, 1111 Howe therapy for depression with specific ideas and Avenue, Suite 475, Sacramento, CA 95825. exercises to help change thought patterns Phone: (916) 567-0163.) associated with depression and other problems. Uses everyday language to describe Copeland, M. E. (1992). The depression schizophrenia. Provides coping guidelines to workbook. Oakland, CA: New Harbinger consumers and their families. Publications. American Psychiatric Association (Producer). Helps consumers take responsibility for wellness (1997). Critical connections: A schizophrenia by using charts and techniques to track and awareness video. (Available from American control moods. Psychiatric Association, 1000 Wilson Boulevard, Suite 1825, Arlington, VA 22209. Phone: Lewinsohn, P., Munoz, R., Youngren, M. A., (703) 907-7300.) & Zeiss, A. (1979). Control your depression. Englewood Cliffs, New Jersey: Prentice Hall. This 30-minute video provides a hopeful, reassuring message about new medications and Self-help book assesses what contributes to psychosocial treatments for schizophrenia. depression. Includes techniques and activities such as relaxation, social skill-enhancement, and McFarlane, W. R. (Producer). (1999). modification of self-defeating thinking patterns. Schizophrenia explained. (Available from W. R. McFarlane, Maine Medical Center, 22 Papolos, D., & Papolos, J. (1997). Overcoming Bramhall Street, Portland, ME 04102. Phone: depression. (3rd ed.). New York: Harper & Row. (207) 871-2091. [email protected].) A comprehensive book written for consumers Provides a full review in lay language of the and families. psychobiology of schizophrenia, emphasizing stress reduction, optimal environments, and interactions for recovery, and family support. May be used in FPE 1-day educational workshops.
Vaccaro, J. V. (1996). Exploring bipolar disorder. Produced by the California Alliance for the Mentally Ill. (Available from the California Alliance for the Mentally Ill, 1111 Howe Avenue, Suite 475, Sacramento, CA 95825. Phone: (916) 567-0163.) This 1-hour video describes the bipolar disorder, recovery, and the role of the family. Consumers contribute valuable insights.
The Evidence 15 Selected Bibliography
The Evidence
References The following list includes the references for all citations in the KIT.
Anderson, C. M., Griffin, S., Ross, I. A., Becker, D. R., Bond, G. R., McCarthy, D., Pagonis, I., Holder, D. P., & Treiber, Thompson, D., Xie, H., McHugo, G. J., R. (1986). A comparative study of the et al. (2001). Converting day treatment impact of education vs. process groups centers to supported employment for families of patients with affective programs in Rhode Island. Psychiatric disorders. Family Process, 25, 185–205. Services, 52, 351–357. American Psychiatric Association. (1997). Becker, D. R., Smith, J., Tanzman, B., Practice guidelines for the treatment Drake, R. E., & Tremblay, T. (2001). of patients with schizophrenia. The Fidelity of supported employment American Journal of Psychiatry. 154(4) programs and employment outcomes. Suppl., 1–63. Psychiatric Services, 52, 834–836.
The Evidence 17 References Bogart, T. & Solomon, P. (1999). Collaborative Ganju, V. (2004, June). Evidence-based practices: procedures to share treatment information Responding to the challenge. Paper presented at among mental health care providers, the 2004 NASMHPD Commissioner’s Meeting, consumers, and families. Psychiatric Services, San Francisco, CA. 50, 1321–1325. Gunderson, J., Berkowitz, C., & Ruizsancho, Bond, G. R., & Salyers, M. P. (2004). Prediction A. (1997). Families of borderline patients: A of outcome from the Dartmouth ACT Fidelity psychoeducational approach. Bulletin of the Scale. CNS Spectrums, 9, 937–942. menninger clinic, 61, 446–457. Clarkin, J. F., Carpenter, D., Hull, J., Hatfield, A. & Lefley, H. (1987). Families of the Wilner, P., and Glick, I. (1998). Effects of mentally ill: Coping and adaptation. New York:, psychoeducational intervention for married Guilford Press. patients with bipolar disorder and their spouses. Hyde, P. S., Falls, K., Morris, J. A., & Psychiatric Services, 49, 531–533. Schoenwald, S. K. (2003). Turning knowledge Cuijpers, P. (1999). The effects of family into practice: A manual for behavioral health interventions on relatives’ burden: A meta- administrators and practitioners about analysis. Journal of Mental Health, 8, 275–285. understanding and implementing evidence- based practices. Boston: Technical Assistance Dixon, L. & Lehman, A. F. (1995). Family Collaborative, Inc. (Available through interventions for schizophrenia. Schizophrenia http://www.tacinc.org or http://www.acmha.org.) Bulletin, 21, 631–643. Institute of Medicine of the National Academies. Dixon, L., McFarlane, W. R., Lefley, H., (2006). Improving the quality of health care for Lucksted, A., Cohen, M., Falloon, I., et al. mental and substance-use conditions: Quality (2001). Evidence-based practices for services to Chasm Series. Washington, DC: National families of people with psychiatric disabilities. Academies Press. Psychiatric Services, 52, 903–910. Lam, D. H., Knipers, L., & Leff, J. P. (1993). Dyck, D., Hendryx, M. S., Short, R. A., Family work with patients suffering from Voss, W. D., and McFarlane, W. R. (2002). schizophrenia: The impact of training on Service use among patients with schizophrenia psychiatric nurses’ attitude and knowledge. in psychoeducational multifamily-group Journal of Advanced Nursing, 18, 233–237. treatment. Psychiatric Services, 53, 749–754. Leff, J., Berkowitz, R., Shavit, N., Strachan, Emanuels-Zuurveen, L. (1997). Spouse-aided A., Glass, I., & Vaughn, C. (1990). A trial of therapy with depressed patients. Behavior family therapy versus a relatives’ group for Modification, 21, 62–77. schizophrenia: Two-year follow-up. British Falloon, I. R. H., Held, T., Cloverdale, R., Journal of Psychiatry, 157, 571–577. & Roncone, T. M. (1999). Psychosocial Leff, J., Kuipers, L., Berkowitz, R., & Sturgeon, interventions for schizophrenia: A review of D. (1985). A controlled trial of social long-term benefits of international studies. intervention in the families of schizophrenic Psychiatric Rehabilitation Skills, 3, 268–290. patients: Two-year follow-up. British Journal of Falloon, I. R. H., & Pederson, J. (1985). Family Psychiatry, 146, 594–600. management in the prevention of morbidity of schizophrenia: The adjustment of the family unit. British Journal of Psychiatry, 147, 156–163.
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The Evidence 21 References
The Evidence
Acknowledgments
The materials included in the Family Psychoeducation (FPE) KIT were developed through the National Implementing Evidence-Based Practices Project. The Project’s Coordinating Center—the New Hampshire-Dartmouth Psychiatric Research Center—in partnership with many other collaborators, including clinicians, researchers, consumers, family members, and administrators, and operating under the direction of the Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, developed, evaluated, and revised these materials.
We wish to acknowledge the many people who contributed to all aspects of this project. In particular, we wish to acknowledge the contributors and consultants on the following pages.
The Evidence 23 Acknowledgments SAMHSA Center for Mental Health Services, Oversight Committee
Michael English Sushmita Shoma Ghose Division of Service and Systems Improvement Community Support Programs Branch Rockville, Maryland Division of Service and Systems Improvement Rockville, Maryland Neal B. Brown Community Support Programs Branch Patricia Gratton Division of Service and Systems Improvement Division of Service and Systems Improvement Rockville, Maryland Rockville, Maryland
Sandra Black Betsy McDonel Herr Community Support Programs Branch Community Support Programs Branch Division of Service and Systems Improvement Division of Service and Systems Improvement Rockville, Maryland Rockville, Maryland
Crystal R. Blyler Larry D. Rickards Community Support Programs Branch Homeless Programs Branch Division of Service and Systems Improvement Division of Service and Systems Improvement Rockville, Maryland Rockville, Maryland
Pamela J. Fischer Homeless Programs Branch Division of Service and Systems Improvement Rockville, Maryland
Co-Leaders
Lisa Dixon William R. McFarlane University of Maryland School of Medicine Maine Medical Center Baltimore, Maryland Portland, Maine
Donna Downing Maine Medical Center Portland, Maine
Acknowledgments 24 The Evidence Contributors
Curtis Adams Kana Enomoto University of Maryland School of Medicine Substance Abuse and Mental Health Services Baltimore, Maryland Administration Rockville, Maryland Christopher S. Amenson Pacific Clinics Institute Ian Falloon Pasadena, California University of Auckland Auckland, New Zealand Carol Anderson University of Pittsburgh Medical Center Laurie Flynn Pittsburgh, Pennsylvania Alexandria, Virginia
Charity Appell Risa Fox Ascutney, Vermont Community Support Programs Branch Division of Service and Systems Improvement Cynthia Bisbee Rockville, Maryland Montgomery, Alabama Shirley M. Glynn Gary Bond U.S. Department of Veteran Affairs Indiana University–Purdue University Greater Los Angeles Healthcare System Indianapolis, Indiana Los Angeles, California Judy Burk Linda H. Jacobson Bangor, Maine Maine Medical Center Jose Canive Portland, Maine University of New Mexico Health Sciences Center Dale Johnson Albuquerque, New Mexico University of Houston Diane Chambers Houston, Texas Vermont Department of Health Gabor Keitner Agency of Human Services Brown University Burlington, Vermont Providence, Rhode Island Michael J. Cohen Alex Kopelowicz National Alliance on Mental Illness (NAMI) University of California Concord, New Hampshire Los Angeles School of Medicine Cathy Donahue Los Angeles, California Calais, Vermont Mary Beth Lapin Dennis Dyck Portland, Maine Washington State University Julian Leff Spokane, Washington Kings College, Institute of Psychiatry London, United Kingdom
The Evidence 25 Acknowledgments Harriet P. Lefley Charles A. Rapp University of Miami The University of Kansas School of Medicine Lawrence, Kansas Miami, Florida Dennis Ross Steven R. Lopez Marshfield, Vermont University of California Los Angeles Department of Psychology Nina R. Schooler Los Angeles, California Georgetown University School of Medicine Ken Lutterman Washington, D.C. National Institutes of Health Bethesda, Maryland Jacqueline Shannon San Angelo, Texas David W. Lynde Dartmouth Psychiatric Research Center Mary Kay Smith Concord, New Hampshire University of Toledo College of Medicine Doug Marty Toledo, Ohio The University of Kansas Lawrence, Kansas Phyllis Solomon University of Pennsylvania, Gregory J. McHugo School of Social Policy and Practice Philadelphia, Dartmouth Psychiatric Research Center Pennsylvania Lebanon, New Hampshire Diane Sondheimer Matthew Merrens SAMHSA Center for Mental Health Services Dartmouth Psychiatric Research Center Rockville, Maryland Lebanon, New Hampshire Bette Stewart David J. Miklowitz University of Maryland School of Medicine University of Colorado Baltimore, Maryland Department of Psychology and Psychiatry Boulder, Colorado Karin Swain Dartmouth Psychiatric Research Center Kim T. Mueser Lebanon, New Hampshire Dartmouth Psychiatric Research Center Concord, New Hampshire William Torrey Dartmouth Medical School Ernest Quimby Hanover, New Hampshire Howard University Washington, D.C. Suzanne Vogel-Scibilia Western Psychiatric Institute and Clinic Pittsburgh, Pennsylvania
Acknowledgments 26 The Evidence Consultants to the National Implementing Evidence-Based Practices Project
Dan Adams Michael Brody St. Johnsbury, Vermont Southwest Connecticut Mental Health Center Bridgeport, Connecticut Diane C. Alden New York State Office of Mental Health Mary Brunette New York, New York Dartmouth Psychiatric Research Center Concord, New Hampshire Lindy Fox Amadio Dartmouth Psychiatric Research Center Sharon Bryson Concord, New Hampshire Ashland, Oregon
Diane Asher Barbara J. Burns The University of Kansas Duke University School of Medicine Lawrence, Kansas Durham, North Carolina
Stephen R. Baker Jennifer Callaghan University of Maryland School of Medicine The University of Kansas Baltimore, Maryland School of Social Welfare Lawrence, Kansas Stephen T. Baron Department of Mental Health Kikuko Campbell Washington, D.C. Indiana University–Purdue University Indianapolis, Indiana Deborah R. Becker Dartmouth Psychiatric Research Center Linda Carlson Lebanon, New Hampshire University of Kansas Lawrence, Kansas Nancy L. Bolton Cambridge, Massachusetts Diana Chambers Department of Health Services Patrick E. Boyle Burlington, Vermont Case Western Reserve University Cleveland, Ohio Alice Claggett University of Toledo College of Medicine Mike Brady Toledo, Ohio Adult and Child Mental Health Center Indianapolis, Indiana Marilyn Cloud Department of Health and Human Services Ken Braiterman Concord, New Hampshire National Alliance on Mental Illness (NAMI) Concord, New Hampshire Melinda Coffman The University of Kansas Janice Braithwaite Lawrence, Kansas Snow Hill, Maryland
The Evidence 27 Acknowledgments Jon Collins Paul G. Gorman Office of Mental Health and Addiction Services Dartmouth Psychiatric Research Center Salem, Oregon Lebanon, New Hampshire
Laurie Coots Gretchen Grappone Dartmouth Psychiatric Research Center Concord, New Hampshire Lebanon, New Hampshire Eileen B. Hansen Judy Cox University of Maryland School of Medicine New York State Office of Mental Health University of Maryland, Baltimore New York, New York Kathy Hardy Harry Cunningham Strafford, Vermont Dartmouth Psychiatric Research Center Concord, New Hampshire Joyce Hedstrom Courtland, Kansas Gene Deegan University of Kansas Lon Herman Lawrence, Kansas Department of Mental Health Columbus, Ohio Natalie DeLuca Indiana University–Purdue University Lia Hicks Indianapolis, Indiana Adult and Child Mental Health Center Indianapolis, Indiana Robert E. Drake Dartmouth Psychiatric Research Center Debra Hrouda Lebanon, New Hampshire Case Western Reserve University Cleveland, Ohio Molly Finnerty New York State Office of Mental Health Bruce Jensen New York, New York Indiana University–Purdue University Indianapolis, Indiana Laura Flint Dartmouth Evidence-Based Practices Center Clark Johnson Burlington, Vermont Salem, New Hampshire Amanda M. Jones Vijay Ganju National Association of State Mental Health Indiana University–Purdue University Program Directors Research Institute Indianapolis, Indiana Alexandria, Virginia Joyce Jorgensen Susan Gingerich Department of Health and Human Services Narberth, Pennsylvania Concord, New Hampshire Hea-Won Kim Phillip Glasgow Wichita, Kansas Indiana University–Purdue University Indianapolis, Indiana Howard H. Goldman University of Maryland School of Medicine Baltimore, Maryland
Acknowledgments 28 The Evidence David A. Kime William R. McFarlane Transcendent Visions and Crazed Nation Zines Maine Medical Center Fairless Hills, Pennsylvania Portland, Maine
Dale Klatzker Mike McKasson The Providence Center Adult and Child Mental Health Center Providence, Rhode Island Indianapolis, Indiana
Kristine Knoll Alan C. McNabb Dartmouth Psychiatric Research Center Ascutney, Vermont Lebanon, New Hampshire Meka McNeal Bill Krenek University of Maryland School of Medicine Department of Mental Health Baltimore, Maryland Columbus, Ohio Ken Minkoff Rick Kruszynski ZiaLogic Case Western Reserve University Albuquerque, New Mexico Cleveland, Ohio Michael W. Moore H. Stephen Leff Office of Mental Health and Addiction Services The Evaluation Center at the Human Services Salem, Oregon Research Institute Cambridge, Massachusetts Roger Morin The Center for Health Care Services Treva E. Lichti San Antonio, Texas National Alliance on Mental Illness (NAMI) Wichita, Kansas Lorna Moser Indiana University–Purdue University Wilma J. Lutz Indianapolis, Indiana Ohio Department of Mental Health Columbus, Ohio Kim T. Mueser Dartmouth Psychiatric Research Center Anthony D. Mancini Concord, New Hampshire New York State Office of Mental Health New York, New York Britt J. Myrhol New York State Office of Mental Health Paul Margolies New York, New York Hudson River Psychiatric Center Poughkeepsie, New York Bill Naughton Southeastern Mental Health Authority Tina Marshall Norwich, Connecticut University of Maryland School of Medicine Baltimore, Maryland Nick Nichols Department of Health Ann McBride Burlington, Vermont Oklahoma City, Oklahoma
The Evidence 29 Acknowledgments Bernard F. Norman Steve Stone Northeast Kingdom Human Services Mental Health and Recovery Board Newport, Vermont Ashland, Ohio
Linda O’Malia Maureen Sullivan Oregon Health and Science University Department of Health and Human Services Portland, Oregon Concord, New Hampshire
Ruth O. Ralph Beth Tanzman University of Southern Maine Vermont Department of Health Portland, Maine Burlington, Vermont
Angela L. Rollins Greg Teague Indian University–Purdue University University of Southern Florida Indianapolis, Indiana Tampa, Florida
Tony Salerno Boyd J. Tracy New York State Office of Mental Health Dartmouth Psychiatric Research Center New York, New York Lebanon, New Hampshire
Diana C. Seybolt Laura Van Tosh University of Maryland School of Medicine Olympia, Washington Baltimore, Maryland Joseph A. Vero Patricia W. Singer National Alliance on Mental Illness (NAMI) Santa Fe, New Mexico Aurora, Ohio
Mary Kay Smith Barbara L. Wieder University of Toledo Case Western Reserve University Toledo, Ohio Cleveland, Ohio
Diane Sterenbuch Mary Woods Bethesda, Maryland Westbridge Community Services Manchester, New Hampshire Bette Stewart University of Maryland School of Medicine Baltimore, Maryland
Selected Bibliography 30 The Evidence Special thanks to
The following organizations for their generous contributions: n The John D. & Catherine T. MacArthur Foundation n West Family Foundation
Production, editorial, and graphics support
Carolyn Boccella Bagin Chandria Jones Center for Clear Communication, Inc. Westat Rockville, Maryland Rockville, Maryland
Sushmita Shoma Ghose Tina Marshall Westat Gaithersburg, Maryland Rockville, Maryland Mary Anne Myers Julien Hofberg Westat Westat Rockville, Maryland Rockville, Maryland Robin Ritter Glynis Jones Westat Westat Rockville, Maryland Rockville, Maryland
The Evidence 31 Acknowledgments
HHS Publication No. SMA-09-4422 Printed 2009
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