Overview of Recovery
Until recently, some severe mental disorders were generally considered to be marked by lifelong deterioration. Schizophrenia, for instance, was seen by the mental health profession as having a uniformly downhill course (Harding et al., 1992). At the beginning of the 20th century, the leading psychiatrist of the era, Emil Kraepelin, judged the outcome of schizophrenia to be so dismal that he named the disorder dementia praecox, or premature dementia. Negative conceptions of severe mental illness, perpetuated in textbooks for decades by Kraepelins original writings, dampened consumers and families expectations, leaving them without hope. A turnabout in attitudes came as a result of the consumer movement and self-help activities. They mobilized a shift toward a more positive set of consumer attitudes and self-perceptions. Research provided a scientific basis for and supported a more optimistic view of the possibility of recovering function (Harding et al., 1992). Promoting recovery became a rallying point and common ground for the consumer and family movements (Frese, 1998).
The concept of recovery is having substantial impact on consumers and families, mental health research, and service delivery. Before describing that impact, this section first turns to an introduction and definitions.
Recovery is a concept introduced in the lay writings of consumers beginning in the 1980s. It was inspired by consumers who had themselves recovered to the extent that they were able to write about their experiences of coping with symptoms, getting better, and gaining an identity (Deegan, 1988; Leete, 1989). Recovery also was fueled by longitudinal research uncovering a more positive course for a significant number of patients with severe mental illness (Harding et al., 1992), although findings across several studies were variable (Harrow et al., 1997) (see discussion in Chapter 4).
Recovery is variously called a process, an outlook, a vision, a guiding principle. There is neither a single agreed-upon definition of recovery nor a single way to measure it. But the overarching message is that hope and restoration of a meaningful life are possible, despite serious mental illness (Deegan, 1988; Anthony, 1993; Stocks, 1995; Spaniol et al., 1997). Instead of focusing primarily on symptom relief, as the medical model dictates, recovery casts a much wider spotlight on restoration of self-esteem and identity and on attaining meaningful roles in society.
Written testimonials by former mental patients have appeared for centuries. These writings, according to historian of medicine Roy Porter, shore up that sense of personhood and identity which they feel is eroded by society and psychiatry (Porter, 1987). What distinguishes the contemporary wave of writings is their critical mass, organizational backing, and freedom of expression from outside the confines of the institution. Deinstitutionalization, the emergence of community supports and psychosocial rehabilitation, and the growth of the consumer and family advocacy movements all paved the way for recovery to take hold (Anthony, 1993).
The concept of recovery continues to be defined in the writings of consumers (see Figure 2-7). These lay writings offer a range of possible definitions, many of which seek to discover meaning, purpose, and hope from having mental illness (Lefley, 1996). The definitions do not, however, imply full recovery, in which full functioning is restored and no medications are needed. Instead they suggest a journey or process, not a destination or cure (Deegan, 1997). One of the most prominent professional proponents of recovery, William A. Anthony, crystallized consumer writings on recovery with the following definition:
It is important to point out that consumers see a distinction between recovery and psychosocial rehabilitation. The latter, which is discussed more extensively in Chapter 4, refers to professional mental health services that bring together approaches from the rehabilitation and the mental health fields (Cook et al., 1996). These services combine pharmacological treatment, skills training, and psychological and social support to clients and families in order to improve their lives and functional capacities. Recovery, by contrast, does not refer to any specific services. Rather, according to the writings of pioneering consumer Patricia Deegan, recovery refers to the lived experience of gaining a new and valued sense of self and of purpose (Deegan, 1988).
The impact of the recovery concept is felt most by consumers and families. Consumers and families are energized by the message of hope and self-determination. Having more active roles in treatment, research, social and vocational functioning, and personal growth strikes a responsive cord. Consumers harboring more optimistic attitudes and expectations may improve the course of their illness, based on related research from the field of psychosocial and vocational rehabilitation (see Chapter 4). Yet direct empirical support for the salutary, long-term effect of positive expectations, on both consumers and families, is still in its infancy (Lefley, 1997).
The recovery concept likewise is having a bearing on mental health research and services. Researchers are beginning to study consumer attitudes and behavior to attempt to identify the elements contributing to recovery. Though still at an early stage, research is being driven by consumer perspectives on recovery. Consumers assert that the recovery process is governed by internal factors (their psychological perceptions and expectations), external factors (social supports), and the ability to self-manage care, all of which interact to give them mastery over their lives. The first systematic efforts to define consumer perceptions of recovery was conducted by consumers. The Well-Being Project, sponsored by the California Department of Mental Health, was a landmark effort in which mental health consumers conducted a multifaceted study to define and explore factors promoting or deterring the well-being of persons diagnosed with serious mental illness (Campbell & Schraiber, 1989). Using quantitative survey research, focus groups, and oral histories, Campbell (1993) arrived at a definition of recovery that incorporates good health, good food, and a decent place to live, all supported by an adequate income that is earned through meaningful work. We need adequate resources and a satisfying social life to meet our desires for comfort and intimacy. Well-being is enriched by creativity, a satisfying spiritual and sexual life, and a sense of happiness (p. 28).
Through semistructured interviews with consumers about recovery, a subsequent study identified the most common factors associated with their success in dealing with a mental illness. They included medication, community support/case management, self-will/self-monitoring, vocational activity (including school), and spirituality (Sullivan, 1994). Other researchers, also using semistructured interviews, suggested that the rediscovery and reconstruction of a sense of self were important to recovery (Davidson & Strauss, 1992).
These early forays by researchers set the stage for consumer-driven research efforts to identify some of the aspects of recovery. A group of consumers with consultant researchers developed the Empowerment Scale (Rogers et al., 1997). After testing a 28-item scale on members of six self-help programs in six states, factor analysis revealed the underlying dimensions of empowerment to be (1) self-efficacyself-esteem; (2) power-powerlessness ; (3) community activism; (4) righteous anger; and (5) optimismcontrol over the future. Other instruments, found to have consistency and construct validity, are the Personal Empowerment Scale, the Organizational Empowerment Scale, and the Extra-Organizational Empowerment Scale (Segal et al., 1995).
Mental health services continue to be refined and shaped by the consumer and recovery emphasis. The most tangible changes in services come from assertive community treatment and psychosocial and vocational rehabilitation, which emphasize an array of approaches to maximize functioning and promote recovery. Consumer interest in self-help and recovery has stimulated the proliferation of interventions for what has been called illness management or self-managed care for relapse prevention of psychotic symptoms. Illness management training programs now teach individuals to identify early warning signs of relapse and to develop strategies for their prevention. All of these transformations in service delivery and research affirming their benefits are discussed at length in Chapter 4.
Champions of recovery assert that its greatest impact will be on mental health providers and the future design of the service system. They envision services being structured to be recovery-oriented to ensure that recovery takes place. They envision mental health professionals believing in and supporting consumers in their quest to recover. In a groundbreaking article, William A. Anthony described recovery as a guiding vision that pulls the field of services into the future. A vision is not reflective of what we are currently achieving, but of what we hope for and dream of achieving. Visionary thinking does not raise unrealistic expectations. A vision begets not false promises but a passion for what we are doing.