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Family Experiences With Mental IllnessReview - Family Experiences With Mental Illness
by Richard Tessler and Gail Gamache
Auburn House, 2000
Review by Lara Winner
Sep 18th 2000 (Volume 4, Issue 38)

In this volume of a little over 180 pages, Richard Tessler and Gail Gamache present their case for greater support for and involvement of families in caring for members who suffer from a serious mental illness; in contrast to the formal mental health system, these families and friends constitute the informal system of care.  Their main concern is what they term the “dilemmas of kinship”: how best to care for and/or care about a mentally ill family member, how to provide assistance while still encouraging independence, how to stay involved with a family member’s care without being labeled as “overinvolved,” and how the formal system of mental health care can best aid both families and their mentally ill members.

Adding to the challenge, according to the authors, are the structure of the postmodern family with its less rigid obligations, the apparent permanence of deinstitutionalization, the traditional, although now declining, professional view of the family as part of the problem rather than of the solution, and the fact that caring for adult family members is “neither age-appropriate nor culturally expected.”(11)  Tessler and Gamache approach the issue here by presenting the results of two major studies conducted over the last decade in the state of Ohio.  Although articles have been published previously using some of this data, the authors state that all the chapters in this book are new.

The authors state that the goal of both studies was to shed light on how the experience of the families of relatives with mental illness (RMIs) is structured by external factors: the relationship between family member and RMI (i.e., parent, sibling, secondary kin, or “fictive” non-blood or marriage-related kin), the RMI’s living situation, relations with mental health providers, and the larger structural changes that took place during the course of the two studies.  The first study (1989-92) accompanied a Robert Wood Johnson Foundation initiative to reduce fragmentation in the state mental health system; the second (1995-97) tracked the Ohio Department of Mental Health’s (ODMH) transition to managed mental health care.  In each study, RMIs nominated family members with whom they had close relationships and were asked to give consent for researchers to contact them.  As mentioned above, these included “fictive kin” such as friends and significant others who were considered “like family.”

In the first study, which comprises the bulk of the book, family members were interviewed three times between October 1989 and March 1992 in conjunction with the Robert Wood Johnson initiative.  Besides measuring how improvements in continuity of care affected family burden (answer: only slight improvement), researchers also analyzed family burden and its relationship to co-residence.  Assessments of burden included traditional objective measures such as care (help with activities of daily living), control (dealing with troublesome or embarrassing behaviors), and financial burden, as well as measures of subjective burden (the emotional cost associated with objective burden).  Where appropriate, short vignettes and other qualitative data were included to help illuminate the experiences of family members dealing with mentally ill relatives.

The authors also collected data on the positive aspects of the relationship between family member and RMI, a topic that has been receiving increasing attention in recent years.  A family member’s illness does not preclude her from making valuable contributions within the family unit, after all; the study found that such contributions, even when modest, were a strong predictor of a gratifying relationship between the RMI and family members.  Other issues discussed in these chapters, as well as throughout the book, include gender inequity in the distribution of burden, the potential impact of RMI co-residence on vulnerable family members, such as children or elderly family members, whether significant stigma was associated with having a mentally ill family member, and how family members’ attributions about RMI behavior (i.e., do they accept the medical model of illness or do they believe that the RMI could control at least some of his behaviors if he really wanted to) affected their relationship with their RMI.

The second study was intended to measure the impact on families of the transition to OhioCare, a carve-out managed mental health care system that was to be funded by a Medicaid waiver.  However, the switch was not approved by the Ohio state legislature and OhioCare was not implemented, although some managed care-like reforms were still put into practice.  It was this milder reform on which the authors chose to focus.  Again contacting family members nominated by clients themselves (who had been participating in an ODMH study since 1989), researchers conducted three telephone interviews between 1995 and 1997.  Family members were asked how much involvement with their RMI they wanted (also the RMI with them), their opinions of the mental health system and mental health care providers, and the insurance status over time of their RMI.  For the second question above—family members’ opinions of public mental health services—the authors created new measurement tools, which they discuss in some detail.

In the discussion of mental health insurance, researchers tested the common assumption that clients turn to the public system of care only after losing or running out of private insurance coverage.  In fact, only 17% of the clients in this sample had ever had insurance other than Medicare or Medicaid; as the authors note, this suggests that the current debate over parity for mental health coverage by private insurers may be something of a non-issue, at least for the severely and persistently mentally ill.

One subject the authors never discuss is how to handle a situation where the family or family relationships actually do contribute to or exacerbate an individual’s mental illness.  This is not entirely surprising, given that they are clearly on a crusade to rehabilitate the family in the eyes of mental health professionals.  Such cases may also be a small minority.  However, it does not help the authors’ case that they never once acknowledge even the possibility of such a situation occurring.

While the authors recommend this book for clients and their families, mental health professionals, and public mental health authorities, only the latter two, as well as those with a scholarly interest in mental health issues, would really find Tessler and Gamache’s research useful or of interest.  The presentation is relatively academic and straightforward; most chapters consist of statistics, graphs, and discussions of findings.  Also, the focus is primarily on macro-level system issues, not the trials and successes of individual families.  What this book accomplishes is to begin to reverse the traditional focus of family research in mental health.  Instead of looking at the impact of the family on the individual, Tessler and Gamache present research on the impact, both positive and negative, of the individual on the family.

 

 

Lara Winner is a graduate student in philosophy with a concentration in medical ethics at the University of Tennessee, Knoxville.  She is interested in mental health/mental health ethics both because it is a traditionally underserved area of medical ethics and because it can provide valuable insights into the interrelationship of mind, body, and spirit.


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