Family Experiences with Mental Illness. . - book review

Journal of Sociology and Social Welfare, Dec, 2001 by James W. Callicutt

Richard Tessler and Gail Gamache, Family Experiences with Mental Illness. Westport, CT: Auburn House, 2000. $19.95 papercover.

In recent years, policy makers, service providers, and researchers have given increased attention to families and their relatives with mental illness (RMI's). As advocacy and self-help groups rattled the cages of mental health service providers and policy makers, the field of mental health has been impacted by new neuroscientific research and, perhaps to a lesser degree, social science research. These forces combined with political, ideological, economic, and other dynamics produced the dejure mental health policy of the deinstitutionalization of psychiatric patients in the United States. Tessler and Gamache suggested that "the current policy may also be referred to as noninstitutionalization, since many clients have never had a long-term hospitalization" (p. 5).

In this context social science researchers have focused more attention on the reciprocal influences of families vis-a-vis their relatives with mental illness. Typically this research has concentrated on families of organized groups such as the Alliance for the Mentally Ill. Tessler and Gamache's study groups, however, were consumers and their family members served by the public mental health system in Ohio. Many of the consumers and families were in poverty. Also, in contrast to most previous research, African Americans were significantly represented in the two study groups (nearly half in one study and over one fifth in the second study).

This book reports on two longitudinal studies conducted by the authors employing survey research methods. The first "studied family members whose relatives were the intended beneficiaries of a major initiative by the Robert Wood Johnson Foundation (RWJ Foundation) to improve the mental health system" (p. 13). The main goal of this study "was to examine family experiences with mental illness with respect to family burden, residence, and continuity of care" (p. 13). Supported and sponsored by the Ohio Department of Mental Health (ODMH), the second study's main goal "was to examine family experiences with mental illness with respect to family member evaluations of mental health professionals, services, and systems" (p. 13).

In the first study data were collected during family interviews across three points in time. In the third wave of family interviews, 305 family members were interviewed for a third time. Within these families, 175 consumers participated. These 175 clients had been interviewed earlier by a separately funded research team. During these previous interviews, family members were identified by the clients who met the criteria for inclusion in the study

   ... length of index stay in a 24 hour mental health setting of less than
   120 days; age between 18 and 64; a primary diagnosis of mental illness
   other than substance abuse; had to meet Ohio standards of disability,
   including diagnosis, hospitalization, and functional status; could not be a
   forensic client; and had to be English speaking and legally competent (pp.
   22-23).

After describing the research landscape, six chapters answered various research questions such as: what basic needs did family members provide, and what troublesome behaviors did family members try to control? The families' most perceived need of the RMI was in the area of managing money. The researchers surprisingly found that family members perceived only mild to moderate levels of burden in the sphere of providing basic needs as well as only mild to moderate levels of resentment regarding their helping as opposed to the anticipated "colossal burden" that everyday citizens believe exists for family members of the mentally ill.

One of the most intriguing and important discussions is in Chapter 7 in which positive feelings of family members toward their RMI are examined. These attitudes have previously been a neglected area of inquiry in the field of mental health.

The second study (identified as the ODMH family study), a three-wave panel survey of family members, was tied to another study initiated in 1989 by the ODMH. Among the current issues in mental health, the ODMH family study examined family involvement in the system of care, evaluating services under managed care, and insurance parity. Unfortunately, the originally anticipated systematic evaluation of managed care could not be conducted since the Ohio legislature did not authorize the implementation of OhioCare, providing for the mandatory enrollment of Medicaid beneficiaries in a managed care system.

The findings revealed that the average family member involvement with the RMI was close to the deepest involvement listed on the measurement scale used. Also, between 1995 and 1997, the families reported statistically significant decreases in satisfaction with the services.

As mentioned previously, the consumer sample did not include persons in trouble with the law nor those who were primarily substance abusers. By excluding consumers who were more likely to present contentious and highly troublesome behavior to their families, "family burden" requires further research.