Evidence-Based Practices for Services to Families of People With Psychiatric Disabilities

The main goals in working with the family of a person who has a mental illness are to achieve the best possible outcome for the patient through collaborative treatment and management and to alleviate the suffering of the family members by supporting them in their efforts to aid the recovery of their loved one.

Treatment models that have been supported by evidence of effectiveness have required clinicians to adhere to 15 principles in working with families of persons who have mental illness:

• Coordinate all elements of treatment and rehabilitation to ensure that everyone is working toward the same goals in a collaborative, supportive relationship.

• Pay attention to both the social and the clinical needs of the consumer.

• Provide optimum medication management.

• Listen to families' concerns and involve them as equal partners in the planning and delivery of treatment.

• Explore family members' expectations of the treatment program and expectations for the consumer.

• Assess the strengths and limitations of the family's ability to support the consumer.

• Help resolve family conflict by responding sensitively to emotional distress.

• Address feelings of loss.

• Provide relevant information for the consumer and his or her family at appropriate times.

• Provide an explicit crisis plan and professional response.

• Help improve communication among family members.

• Provide training for the family in structured problem-solving techniques.

• Encourage family members to expand their social support networks—for example, to participate in family support organizations such as NAMI.

• Be flexible in meeting the needs of the family.

• Provide the family with easy access to another professional in the event that the current work with the family ceases.

Implementation of family psychoeducation may be hindered by realities in the lives of potential participants. Practical impediments such as transportation problems and competing demands for time and energy are common (50). If family members perceive that the training provided through family psychoeducation involves expectations of additional caregiving responsibilities, they may stay away (16). Sessions must be scheduled during periods when facilitators are available, but these times may not suit the clients and their families. Family members face significant burdens that may pose barriers to attending family psychoeducation sessions, even though attendance could lighten these burdens (60,61).

In addition, stigma is common—family members may not want to be identified with psychiatric facilities. They may feel uncomfortable revealing that there is psychiatric illness in their family and airing their problems in a public setting. They may have had negative experiences in the past and be hesitant to expose themselves to the possibility of further negative experiences. Most people have not had access to information about the value of family psychoeducation and so may not appreciate the potential utility of these programs (16). They may believe that nothing will help. Consumers may have similar apprehensions and may worry about losing the confidential relationship with their treatment teams or about losing autonomy.

The lack of availability of family psychoeducation may reflect an underappreciation on the part of mental health care providers of the utility and importance of this treatment approach (16,18,31,50). Providers may choose medication over psychosocial interventions, and family involvement may seem superfluous. In addition, some providers may still adhere to theories that blame family dynamics for schizophrenia. Bergmark (62) noted the persistence of psychodynamic theories as a potential barrier, because many families perceive these theories as blaming. The findings on expression of emotion—the original basis for family psychoeducation—are often perceived similarly despite researchers' attempts to avoid implying blame (16,50).

Although the knowledge and underlying assumptions of individuals are important, they are only part of the picture. Wright (63) found that job and organizational factors were much better predictors of the frequency of mental health professionals' involvement with families than were professionals' attitudes. The clinician's work schedule and professional discipline were the strongest predictors, but other organizational factors posed barriers as well. Dissemination of the multiple-family psychoeducation group model developed by McFarlane and colleagues (64,59) has been hindered by a paucity of programmatic leadership, conflicts between the model's philosophy and typical agency practices, insufficient resources, and inadequate attention to human dynamics at the system level. For example, reasonable concerns about confidentiality may be seen as roadblocks to family involvement rather than as opportunities to create useful innovations (65). Similar barriers to implementation of family treatment approaches have been identified in studies in Italy (66).

Mental health professionals have also expressed concern about the cost and duration of structured family psychoeducation programs (67), even though medication and case management services for clients usually have to be continued for much longer periods than family programs. The lack of reimbursement for sessions with families that do not involve the mentally ill relative—a characteristic of many family psychoeducation programs—is a significant disincentive to providing such services. Caseloads are universally high, and staff's time is stretched thin. Therefore devoting substantial human resources to training, organizing, leading, and sustaining family psychoeducation is seen as a luxury (16). In such an atmosphere, horizons tend to be short. The long-term payoff of fewer crises and hospitalizations and lower total costs of treatment is overshadowed by immediate organizational crises or short-term goals (16).

At the health-system level, pressures to focus on outcomes, cost-effectiveness, and customer satisfaction seem in principle to favor the widespread adoption of family information and support interventions. However, other tenets of the current health care environment—such as the emphasis on short-term cost savings, technical rather than human-process-oriented remedies, and individual pathology—discourage clinicians from providing such services, which may be viewed as ancillary. At this level, it seems that the evidence for family psychoeducation has not been accepted. Many of the consumer- and program-level impediments we have mentioned are paralleled in the larger administrative systems: lack of awareness of evidence, ingrained assumptions about how care should be structured, and inadequate resources.

At the level of the individual consumer and members of his or her family, effective treatment models include strategies for overcoming barriers to participation, such as stigma and a sense of hopelessness. Such strategies include offering to hold sessions in the home of the client or family member; helping family members understand that the intervention is designed to improve the lives of everyone in the family, not just the patient; being flexible about scheduling family meetings; and providing education during the engagement process to destigmatize mental illness and engender hope (70,71).

Recent efforts to disseminate family psychoeducation in New York State, Los Angeles, Maine, and Illinois have illustrated clearly the importance of including clients and their families in the planning, adaptation, and eventual implementation of family psychoeducation (72). In New York, dissemination was initiated and sponsored by the state NAMI chapter (73). Dissemination in Maine and Illinois had dramatically different outcomes, partly because NAMI's Maine chapter provided strong formal support for the effort in that state, whereas the effort in Illinois did not involve NAMI's Illinois chapters (73).

Experience and now some empirical data illustrate the need to include consumers and their families in efforts to disseminate family psychoeducation. The tension often encountered between some consumer advocacy groups and family advocacy organizations can be bridged by emphasizing the complementarity of the outcomes in family work: as consumers' symptoms are alleviated and their functioning improves, their families become more engaged in and satisfied with community life, and both the family burden and medical illness decrease (22,74,75).

Among professionals working in community mental health services, awareness and evidence, although necessary, are often not sufficient for adoption of new programs. Although interventions must adhere to parameters of the family psychoeducation model if good client and family outcomes are to be achieved, they also have to be responsive to local organizational and community cultures. Engagement and implementation strategies, as well as the interventions themselves, must be tailored to local and cultural characteristics, workload and other stresses faced by clinicians and agencies, particular diagnoses, relationships, the duration of illness and disability, and whether the client is currently receiving medical treatment (50,76,77).

Perhaps even more critical to the adoption of family psychoeducation is the need to match both administrative support and expectations for evidence-based practice with a rationale and explication of the advantages of this treatment approach that are meaningful to clinicians. Advantages can include avoidance of crises, more efficient case management, gratitude from families and consumers, and a more interesting, invigorating work environment for clinicians. Recent studies have shown that on the whole, knowledge about empirical advantages of family psychoeducation, such as reductions in relapse and rehospitalization rates, carry almost no weight in convincing working clinicians to change their attitudes toward families and adopt new clinical practices (73).

Consensus building among agency staff and directors—including a wide range of concerned parties—in a process of planning from the bottom up is critical but must be tailored to address local operational barriers and contrary beliefs. In addition, successful implementation of family psychoeducation has required ongoing supervision, operational consultation, and general support. In a sense, these characteristics help to build consensus on an ongoing basis. For example, the PORT found that it was possible to change current practice by providing a high level of technical assistance and a supportive environment that reflected staff agreement with the principles and philosophy of the new program (67). The recent dissemination of a family psychoeducation program in Los Angeles County succeeded because of the persistent advocacy of the local NAMI group, the support of top management, a nine-month training period, the high aptitude and strong commitment of the trainees, and the skill of the trainer (72).

Although it is tempting to assume that implementation of family psychoeducation could be mandated centrally by state mental health authorities, experience suggests that a more complex approach is required. Dissemination of a family psychoeducation program in New York State succeeded partly because of a partnership between the state, the NAMI affiliate, and an academic center. Unfortunately, the state's mental health authority abruptly terminated this large dissemination program before a widespread impact could be made. Maine's recent success was initiated by a state trade association of mental health centers and services, with support from but little involvement by the state mental health authority, which recently began exploring a formal partnership to continue and deepen this largely successful effort. A simultaneous effort in Illinois, initiated by the state authority but distinctly lacking consensus among center directors or the state NAMI chapter, has been less successful (73). One state that has had some success is New Jersey, which was able to disseminate family psychoeducation by setting expectations and requirements at the state level.

With the exception of the New Jersey effort, experience suggests that the most promising strategy is one in which provider organizations take the initiative with support from consumer and family organizations, the state mental health authority, and the key insurance payers. Appropriate reimbursement for family psychoeducation will follow. Experience also suggests that several years of consistent effort and ongoing monitoring are required for success. Fortunately, this process is not necessarily an expensive one: Maine implemented its family psychoeducation program in more than 90 percent of agencies for about 25 cents per capita over four years, including evaluation costs. The principal costs are in human effort, especially the effort required to overcome resistance to change.

Delivery of services to families must be subject to accountability and tracking. Although many states encourage the delivery of services to families, few monitor such services or make funding contingent on the services being delivered (78). One system-level option is for mental health centers to create a position for an adult family intervention coordinator, who would serve as the contact person for interventions, facilitate communication between staff and families, supervise clinicians, and monitor fidelity (79).

In the absence of family psychoeducation programs, voluntary peer-led family education programs have developed, epitomized by NAMI's Family-to-Family Education Program (FFEP) (14,80,81,82). FFEP is currently available in 41 states, many of which have waiting lists. FFEP and other mutual-assistance family programs are organized and led by trained volunteers from families of persons who have mental illness.

These community programs are offered regardless of the mentally ill person's treatment status. They tend to be brief—for example, 12 weeks for FFEP—and mix families of persons with various diagnoses, although they focus on persons with schizophrenia or bipolar disorder. On the basis of a trauma-and-recovery model of a family's experience in coping with mental illness, FFEP merges education with specific support mechanisms to help families through the various stages of comprehending and coping with a family member's mental illness (14). The program focuses first on outcomes of family members and their well-being, although benefits to the patient are also considered to be important (50).

Uncontrolled research on FFEP and its predecessor, Journey of Hope, suggests that the program increases the participants' knowledge about the causes and treatment of mental illness, their understanding of the mental health system, and their well-being (13). In a prospective, naturalistic study, FFEP participants reported that they had significantly less displeasure and concern about members of their family who had mental illness and significantly more empowerment at the family, community, and service-system levels after they had completed the program (83). Benefits observed at the end of the program had been sustained six months after the intervention. Preliminary results from a second ongoing study with a waiting-list control design have revealed similar findings.

Although FFEP currently lacks rigorous scientific evidence of efficacy in improving clinical or functional outcomes of persons who have mental illness, it shows considerable promise for improving the well-being of family members. In recent research and practice, attempts have been made to optimize the clinical opportunities provided by family psychoeducation and peer-based programs such as FFEP by developing partnerships between the two strategies. For example, family psychoeducation programs have used FFEP teachers as leaders, and participation in FFEP has facilitated eventual participation in family psychoeducation.