Use of Qualitative Methods to Explore the Quality-of-Life Construct From a Consumer Perspective

Qualitative research strategies, specifically in-depth interviews and focus groups, were used to explore the construct of quality of life. In addition, the first author explored enablers that participants believed helped or would help them achieve a satisfactory quality of life and barriers that prevented them from achieving a satisfactory quality of life. Ethics approval was obtained from the University of Western Ontario and from ethics review boards of Regional Mental Health Care St. Thomas. To be included in this study, participants were required to have a diagnosed mental illness, be between the ages of 18 and 70, and be willing and able to provide written consent. Participants were recruited through their treating clinicians or consumer survivor agencies. A snowball sample of convenience was used for recruitment.

Fifty-three individuals participated in this study. Over a 16-month period (October 2002 through February 2004) individuals were recruited for this study; 18 individuals gave in-depth interviews and 35 participated in focus groups. Table 1 shows the demographic data for the participants. The first author conducted all interviews and focus groups. Interviews and focus groups took place in hospitals, community clinics, community agencies, and clients' homes. The six focus groups were composed of six to eight individuals. A semistructured interview guide was used for interviews. Interviews lasted approximately an hour to an hour and a half. All interviews and focus groups were audiotaped and transcribed. Several trustworthiness strategies were employed to ensure credibility, including member checking, triangulation, peer debriefing, thick description, and an audit trail. Transcripts were analyzed by using the constant comparative method. More details regarding methods, recruitment, and analysis can be found in a dissertation by Corring ( 9 ). [An appendix showing selected verbatim quotations is available as an online supplement at ps.psychiatryonline.org.]

Two overarching themes, four domains, and several subcomponents were identified. The two dominant themes permeated all of our results, crossing all domains, influencing the linkages between domains, and clearly influencing how individuals framed their expectations regarding quality of life. The first theme was the presence of stigma among individuals with mental illness as experienced and anticipated from persons with whom they interact, as well as the self-stigma and stigmatizing attitudes toward their peers. In a very profound way stigma influenced the actions of individuals living with mental illness in everyday life as well as their planning for the future. The second theme was the pervasive fear of the positive symptoms of psychoses—such as hallucinations, delusions, and general loss of contact with reality—and the subsequent perceived need for constant vigilance regarding the reoccurrence of psychotic symptoms. In addition, four domains were identified—the experience of illness, relationships, occupation, and sense of self. They, and their subcomponents, are described more fully below.

The results of this qualitative study raise many issues in regard to the adequacy of current quantitative measures used to evaluate quality of life, suggesting that explorations of this very complex construct should employ methods that address the personal, idiosyncratic meanings and importance of life experiences. Most of the existing measures evaluate the experience of illness as it pertains to symptoms and side effects, but they do not sufficiently explore illness burden or illness recovery issues ( 8 ). Many existing measures examine the presence—but not the quality—of social relationships, levels of social support, and living situations. Most of these measures examine the level of activity or use of time by the individual, but they fail to examine the "meaningfulness" of these occupations and the barriers that stigma can present to acquisition of a valued occupation. Finally, a few of these measures seek to evaluate the effect of others on self or they focus on psychological well-being and the effects of distress as a means to understanding the effects of the illness on sense of self, but they do not examine in depth the way in which the sense of self is shaped by the attitudes of society and by a person's feelings of self-stigma.

Stigma toward persons with mental illness has been identified as a major challenge for some time. Thirty years ago Judy Chamberlin's book On Our Own: Patient-Controlled Alternatives to the Mental Health System helped give birth to the phrase "Nothing about us without us," which became the mantra of the consumer movement in the United States ( 12 ). More than ten years earlier Farina and colleagues ( 13 ) had conducted an experimental study on the impact of stigma and found that stigma did lead to discrimination in employment, in physicians' offices, and in the psychiatric hospital. Struening and colleagues ( 14 ) reported that "having once been a patient in a mental hospital is a notable experience. It is a kind of unwelcome legacy that must be endured until it is somehow conquered…. It is stigma that lurks in the hearts, minds and fears of many people."

Williams and Collins ( 15 ) contended that despite the new expectations communicated by the World Health Organization ( 16 ) stating that people living with schizophrenia can recover from the effects of the illness, "people with schizophrenia continue to live in an environment in which both the general public and health professionals have low expectations for them. Notably these stereotypes need not refer solely to the long-term patient. It appears that chronicity has not been defined solely by length of illness or persistence of symptoms but has also been encompassed by judgments about social functioning."

Participants in the study talked about the desire to be seen as "normal" human beings. The issue of what is normal is a complex one. In an article that reviewed the International Classification of Impairment, Disability, and Handicap and its need for revision, Hahn ( 17 ) noted that the term "normal" is a relatively recent addition to the English language. The term "normal" first appeared in a dictionary in 1828, and the term "abnormal" later appeared in 1853. In its original definition, "norms" were meant to represent typical ways of doing things. It was not intended that norms should be seen as "the ideal goal towards which all must strive." Pfeiffer ( 18 ) argued that the definition of normal is tied to culture. What is normal in one society can be considered abnormal in another. In the Western culture, behavior that is not normal leads to stigmatizing attitudes and behaviors, which persons with disability experience on a frequent basis. Advocates from the disability community challenge health care professionals to view disability as more than the result of medical illness or injury and to recognize the impact of societal attitudes and values ( 17, 19 ).

When participants in this study were consistently treated as different from the norm, the effects of stigma became internalized and self-stigma influenced their sense of self.

The results of this study appear to indicate that the symptoms of severe mental illness (the impairment) and societal reactions to and expectations of persons with severe mental illness are both instrumental in the development and unfolding of disability. This study suggests that complex and varied interplay of impairment and social factors must be included in studies examining quality of life.

The prognosis for individuals diagnosed as having schizophrenia in the past five to ten years is significantly better than it was in prior years ( 16, 20, 21 ), and yet many, even many mental health professionals, do not recognize the potential for recovery ( 20 ).

One study participant described how even the basics can improve quality of life: "Well, I think you have to be happy with what you've got or happy with what you can negotiate with other people. Like, where I live we have a good quality of life because we have an open kitchen … anytime she's [the landlady is] not preparing meals, you can go in and you have a snack. On weekends we have a movie on DVD…. The [landlady's} kind enough to do that for us … so that kind of helps in your quality of life…. It makes you feel like a human being."

Participants in this study talked about wanting to be seen as "normal." The attainment of "normal" status continues to be elusive because of the continuing effects of stigma on persons with mental illness. They spoke of wanting a normal, ordinary life, but in actual fact, many have lowered expectations. There were no expectations of expensive cars and homes or high-profile careers, and there was no exaggerated sense of self-importance. Participants in this and other studies ( 21, 22 ) were willing to settle for the basics in life—mental and physical health, supportive relationships, meaningful occupations, and a positive sense of self—believing that acquisition of these basics would lead to a more satisfactory quality of life. Quality of life for individuals living with mental illness is an intensely personal experience. Each person places more or less importance on one or more of these domains, depending on their individual situation.

Strauss ( 23, 24 ) emphasized the importance of exploring the subjective experience of the person experiencing the illness. He stressed the importance of listening to the person's story about his or her life and illness experiences. We have provided many illustrations of how qualitative inquiry can assist in this endeavor as we seek to ask, listen, and learn from these individuals ( 25 ).

Ensuring changes to social, cultural, and economic conditions should not be the responsibility of the person with the illness. The onus should be on the society in which he or she lives. Attitudes are extremely difficult to change; however, legislation requiring change has demonstrated that change is possible. Persons with severe and persistent mental illness want what "normal persons" want, but they are willing to settle for so much less. As a society we could and should provide so much more.

Funding for this project was provided by the St. Joseph's Health Care London Foundation.

The authors report no competing interests.

Dr. Corring is a program director with the Specialized Adult St. Thomas Program, Regional Mental Health Care St. Thomas, P.O. Box 2004, St. Thomas, Ontario, Canada N5P 3V9 (e-mail: [email protected]). Dr. Cook is professor emeritus at the School of Occupational Therapy, University of Western Ontario, London, Ontario.