Providing services to families of persons with schizophrenia: present and future (1999)

BACKGROUND: The important role of families and other caregivers in the lives of adults with schizophrenia is well documented. Persons with schizophrenia frequently live with their families of origin, and the vast majority have regular family contact. Families of persons with schizophrenia have also been demonstrated to have significant needs. Families most frequently cite the need for education and support in helping them to cope with their family member's illness. Further, numerous studies have documented the benefits of interventions designed to meet the needs of family members. AIMS OF THE STUDY: This paper identifies critical issues and challenges in the provision of services to families of persons with schizophrenia and other serious and persistent mental illnesses. METHODS: This study draws from both a literature review and a summary of pertinent data from the Schizophrenia Patient Outcomes Research Team (PORT). RESULTS: Recent best practices standards and treatment recommendations specify that families should be given education and support. One of the PORT treatment recommendations states that "Patients who have on-going contact with their families should be offered a family psychosocial intervention which spans at least nine months and which provides combinations of: Education about the illness; Family support; Crisis intervention; and, Problem solving skills training". The PORT treatment recommendations are based on well designed and rigorous research on family psychoeducation programs that demonstrate reduced relapse rates and improved patient and family well-being for persons whose families receive psychoeducation. While family psychoeducation programs have been the subject of extensive treatment trials, family members and family organizations have endorsed a variety of other models of services such as family education and consultation models. These models have not been as rigorously researched as family psychoeducation. Control groups are generally lacking. No consistent findings have been reported, although isolated studies have found increased knowledge, self-efficacy and greater satisfaction with treatment among families who have participated in family education programs. Remarkably little is known about the extent to which families actually receive appropriate services. However, PORT data from administrative claims and client interviews suggest that family services are minimal. Further, previous research has consistently revealed that families have high levels of dissatisfaction with mental health services DISCUSSION: If family psychoeducation is effective, why do all the data suggest that it is scarcely offered? Even use of family education programs, which are perhaps easier to deliver and cheapter, is limited. Some answers to these questions may be found in evaluations of efforts to disseminate family education and psychoeducation models. The Schizophrenia PORT sponsored a dissemination of William McFarlane's multiple family psychoeducational group. One obstacle to implementation was lack of programmatic leadership at agencies. Another was conflict between the philosophy and principles of the family model and typical agency practices. Dissemination efforts of the MFPG model are under way in the states of Illinois and Maine. IMPLICATIONS FOR FURTHER RESEARCH: Four main areas of research are necessary to achieve progress in providing services to families and persons with serious and persistent brain diseases such as schizophrenia. (i) We need a better understanding of the current state of affairs, including systematic exploration of what kinds of service different kinds of family are receiving or not receiving and from whom. Research on treated populations is not sufficient. Billing records alone will not account for the informal clinician/family contacts, which are valued. This research must include the patient, family and clinician perspectives as well as incorporating systemic factors such as financing and organization of services. (ii) A second area of research should focus on family interventions. What works for whom and at what cost? What are the critical ingredients of successful family models? Peer-led community family education programs are severely under-researched. While psychoeducation has established efficacy, it may have maximal value in first-break patients. How can the acceptability of psychoeducation to families and clinicians be maximized? Are there ways to capitalize on the best of clinician-run and family-run models to create hybrid models? Does family psychoeducation shift costs toward or away from families? (iii) How can successful family services models be disseminated effectively? Although it is still necessary to know more about the current status of services to families, it is quite clear that the best researched psychoeducation programs have limited, if any, penetration in typical communities. Approaches that combine grassroots participation of clinicians and family members as well as efforts with senior administrators and payers are likely to yield the greatest success. (iv) More research is necessary on the role of families and other caregivers in recovery and course of illness. This research must be driven by an appreciation of the biopsychosocial model and be empirical rather than ideological. Such an approach will optimally protect families fn5 from their own tendency to self-blame and from the tendency of the medical models prevalent in industrialized countries to find blame, fault and pathology.