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An exploration of the meaning of productivity in non-working men with a diagnosis of schizophrenia Reinhardt, Lauralynn 2000

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AN' EXPLORATION OF THE MEANING OF PRODUCTIVITY IN NON-WORKING MEN WITH A DIAGNOSIS OF SCHIZOPHRENIA by LAURALYNN REINHARDT B.Sc, The University of Alberta, 1988 A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE in THE FACULTY OF GRADUATE STUDIES Department of Medicine; School of Rehabilitation Sciences; Rehabilitation Sciences We accept this thesis as conforming to the required standard-? THE UNIVERSITY OF BRITISH COLUMBIA August 2 000 © LauraLynn Reinhardt, 2 00 0 In presenting this thesis in partial fulfi lment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of [ L ^ K A ^ ' [, frt ko/) Z>C^r\C*s? The University of British Columbia Vancouver, Canada Date fluy*>r Q < SGQO DE-6 (2/88) Schizophrenia and Work A b s t r a c t The purpose of this study is to enhance the body'ofi knowledge that has been developed concerning the lives of non-working young men who have schizophrenia. It is concerned with how these men experience activities that constitute productive endeavors within the context of their lives given that they are not performing traditionally defined productive activities such as employment, education or volunteer work: Adhering to a narrative approach, a semi-structured interview was used to assist five men in telling their stories of productivity. Content and thematic analysis was used to explore the influence of their experiences on their personal meanings of productivity and how these meanings have affected their behavior. The relevance of this information to occupational therapy was also explored. The most significant theme was that of the. men performing a precarious balancing act of trying not get sick (have a relapse) .by working to occupy themselves and yet not become too stressed. Staying well was seen as the most important goal in their lives. Going from place to place, doing a number of activities, accomplishing a task and their faith in God were all seen as effective strategies to achieve this end. Schizophrenia and Work iii TABLE OF CONTENTS \ Abstract ; ii Table of Contents .'. iii Acknowledgements .vi Chapter One: INTRODUCTION... : 1 Productivity : .....: 5 Schizophrenia 8 Meaning 13 Experience 15 Rationale for Study 16 . Chapter Two: METHODOLOGICAL APPROACH 2 5 Methods .'. 25 Narrative 2 6 Narrative Relationships •. .....: : .-.2 9 Narrative Interviewing 31 Analysis of Narrative 3 6 Research Design 41 Par t i c ipant s 41 Recruitment Procedures 4 3 Interviews 4 5 Trustworthiness of Data 49 Introduction of Participants 51 Sonny .'. ..51 Seth 53 Schizophrenia and Work iv Russ 54 Tim. .' '. 55 Liam. ...5 6 Environmental Context 57 Chapter Three: THE MEN'S EXPERIENCE OF THE ILLNESS 61 What They Were Doing When They Became 111 61 Where They'd Like To Be 64 Future Vs Reality: "my long range plan depends on how the illness affects me" 65 Father' s Footsteps. : 68 What' s Stopping Them. 69 Concerns About Cognitive Abilities: "I've been standing in front of a brick wall saying there's no way around. . ." 69 Stress and Thinking About Work/School: "I can be at peace a little bit better because without worrying about the future and stuff..." 72 How They see' Themselves Now 75 Change in Se 1 f 75 What' s Important Now 78 Independence/Appearing Normal 78 Money 82 Self Expression 88 Keeping Healthy 8 8 Schizophrenia and Work v Chapter Four: LIFE NOW: "THE THING I WANT MOST IS TO NOT BECOME MENTALLY ILL" 93. Day to Day 93 Got to Get Out: "It's an awful long day..." 94 Structure and Being Occupied: "I feel if I'm not occupied sometimes it's very bad for me..." 97 Time (Go) : The Need to Move From Place to. Place 100 Productivity 106 Social Support Networks: "How you get along with the other person, it also depends on the quality of the other person. . . " I Ill There's Something Greater Than Me 119 Spirituality 12 0 Spiritual Beliefs as Directors of Action 124 Chapter Five: DISCUSSION 12 8 Clinical Implications 132 What To Do With One's Time 13 3 Change of Routine 13 5 Spirituality 13 6 Limitations of the Study 142 Future Research 14 5 Appendix A: Guiding Questions 14 7 Appendix B : Medication 14 9 References 152 Schizophrenia and Work vi ACKNOWLEDGEMENTS I would like to thank the many people who have helped and encouraged me along the way with this research project. First, the men gave their time and shared their lives with me. I would also like to thank my colleagues at the-Schizophrenia Rehabilitation Day Program, my parents and friends, who, with their continued interest and curiosity have given me the impetus me to finish. And finally my thesis committee and specifically Isabel Dyck, whose great patience and support enabled me to find my way. Schizophrenia and Work 1 C h a p t e r One: INTRODUCTION The research study reported in this document was designed to enhance the body of knowledge that has been developed concerning the lives of people who have schizophrenia. The area of concern in this study is that of productivity and how persons with the illness of schizophrenia experience activities that constitute productive endeavors within the contexts of their lives. More specifically, the study addresses the question of whether the experience of having the illness of schizophrenia impacts on the meaning one ascribes to being productive. A secondary question to be explored concerns whether the meaning of the activities one performs to be productive change over the course of the illness experience. The initial impetus for the study arose out of clinical experience. In working as an occupational therapist, helping people with schizophrenia to do the things they would like to in their lives, I hope to improve their quality of life through enhancing their occupational, performance. As occupational therapists "[w]hen we speak of occupational performance, we refer to the day-to-day engagement in occupations that organize our lives and meet Schizophrenia and Work 2 our needs to maintain ourselves, to be productive, and to derive enjoyment and satisfaction within our environments." (Christiansen & Baum, 1991, p. 27). In other words we help individuals to do the things that are important to them. The aim of our service is to assist people with a diagnosis of schizophrenia to achieve the skills necessary to move from their current level of functioning to a level that would allow them to accomplish their goals. For most clients this means either returning to or starting school or work. Many we are able to help move on to job training programs, jobs, and to go back to university or high school. Others are able to move on to volunteer jobs and night school courses. However, for some people this does not happen, for even if they are able to improve task and social skills they are still unable to meet their goal of participating in work or school. What happens to these people? Is there more we can do? As occupational therapists we are taught that all activities in which people engage in can be grouped into categories, and that a balance of these categories is required for one to achieve optimal quality of life (Canadian Association of Occupational Therapists, 1991, 1993; Christiansen & Baum, 1991; McKay & Mirkopoulos, 1996; Primeau, 1996). For the most part we describe these • ••'. Schizophrenia and Work 3 activities as"occupations. More specifically an occupation is defined as ." [e] ngagement in activities, •tasks and roles, for the purpose of productive pursuit, maintaining onenessv with the environment and relaxation, entertainment, activity and celebration (Christiansen & Baum, 1991,-p: 26), and " [cjhunks of activities [accomplished] in a stream of time" (Yerxa et-al, 1990,.p. 5)" (Cited in the Occupational Therapy Guidelines in Mental Health," 1993, p. 81). Or specifically in Canada "• [o] ccupations include everything we do (i.j to look after ourselves (self-care) , (ii) to enjoy ourselves (leisure, and (iii) to contribute as full members of society (productivity)" (McKay & Mirkopoulos, 1996, p. 3). The extent to which occupations are seen to be part of people's daily lives is demonstrated when Christiansen and Baum (1991) state, "[t]he position here is that all goal-oriented • behavior related to daily living is occupational in nature. This.differs from earlier assertions . made by Reilly (1962) and Kielhofner (1988) that some activities are not nature, such as some survival, social, and spiritual pursuits. However, since such pursuits are often requirements of social roles, it seems inconsistent to exclude them from the general Schizophrenia and Work 4 consideration of occupational performance" (p. 26) . Identifying the activities people perform is only the beginning, for the profession holds that "[m]aintaining balance among self-care/self maintenance, work/education, play/leisure, and rest/relaxation is important. It serves as a foil for stress that may accompany career achievement and the multiple roles associated with stage [young -adulthood - 20-35]"(Christiansen & Baum,1991, p. 57). Activities are thus seen to belong to categories of role participation and a balance amongst these categories is seen as necessary for personal fulfillment. An issue arises from these beliefs, for if a balance of spheres of activities is significant in achieving quality of life, what happens when someone is not or cannot participate in one of those sphere's? Do they adapt by increasing the amount of other activities from other categories, do the meanings of some activities change, thereby moving it into another, or do the boundaries between categories remain the same and no activities are performed in one category? If the latter is true, what does this mean for such people's optimal quality of life? How does someone who is not performing traditionally productive activities view him or herself in regard to being a. productive person? By Schizophrenia and Work addressing these questions we will be better able to help our clients find and perform meaningful activities. Productivity To understand how the term productivity is being used in this research, a brief description of the history of the term within the profession of occupational therapy is needed. Adolph Meyer, a founding father of both occupational therapy and psychiatry, suggested "that occupational therapists could provide opportunities' '.. . to work, to do and to plan and create, and to learn to use material.'" (Christiansen & Baum, 1991, p. 6-7). Work in this context is assumed to be defined as "... the labor, tasks, or duty that is one's accustomed means of livelihood... may apply to any purposeful activity whether remunerated or not." (Webster's Ninth Collegiate Dictionary, 1990, p. 1359). As the profession has developed over the years, Meyer's ideas on occupational therapy's role have led therapists both in the United States and Canada to divide human activity into different performance components. In the United States, the domain of interest within this study is currently defined as 'work/education': "'Work/education refers to skill and performance in purposeful and productive activities in- the home, in employment, in school, and in the community.' (AOTA, Schizophrenia and Work 6 1981/1989)",'cited in (Christiansen & Baum, 1991, p.46). The Occupational Therapy Guidelines for Client Centered Practice (1991) published by the Canadian Association of Occupational Therapists (CAOT) defines this same domain as productivity, which refers to "[t]hose activities or tasks which are done to enable the person to provide support to . the self, family and society through the production of goods and services"(p.141). It is stated at a later point in the document that productivity can also be thought to include "...activities and roles which give meaning and purpose to life" (CAOT, 1991,' p. 124) .. This latter conceptualization is not developed and the majority of discussion within this domain is related to vocational, prevocational and avocational activities for adults. Within the general occupational therapy literature productivity is defined as " [T]hose activities or tasks which are done to enable the person to provide support to the self, family and society through the production of goods and services " (Reed & Sanderson, 1980, p. 249-250). In practice, when occupational therapists speak of productivity they refer to the activities in one's life which involve work, school, and volunteer work, activities that go beyond, though not far beyond, the economic view of productivity. Schizophrenia and Work 7 If one examines the more common definitions .of activities within the sphere of productivity it becomes evident that conceptualization of productivity has been greatly influenced by a culture which classifies activities according to an economic frame of reference (for example Brief & Nord, 1990; Kates, 1990; Ransome, 1996). This is demonstrated in some literature where personal economic activities have been identified as separate or different than activities which are self fulfilling and/or self supporting (Nord, Brief, Atieh & Doherty, 1990; Primeau, 1995). In other words, productive activity is defined by a sole criterion, that of its economic consequence. In contrast, this research takes the stance that the activities that one performs within the sphere of productivity go beyond the economic realm and more closely match the understanding put forward by social scientists, such as Gamst (1995).who states "... humans do not live for bread alone. Their underlying motivations are dual, in the form of both material rewards and social gratification's, including definition of the self" (p. xv). The term productivity, rather than work, has been chosen in guiding this study. The term work limits the understanding of the domain of productive activities and behavior, for. more- than Schizophrenia and Work 8 what one is remunerated for can be determined as productive. This research may add to the body of knowledge on occupation within Occupational Therapy. Is the categorization of occupations into spheres relevant to clinical practice? Do our clients hold or buy into our definitions? Are these definitions limiting? What if the meaning of activities changes or crosses boundaries in the minds of our clients? What if it does not? What happens then to the idea of balance? The research is not designed to provide comprehensive answers to these questions, but to help inform the profession in these areas and to stimulate further research addressing such questions. Schizophrenia Professionally, this study is significant in that there is presently little research about how someone with schizophrenia experiences productive activities. Research designed to enhance the understanding of the interplay between people, activities and the environment in all areas is needed in the profession. As Yerxa (1991) states "Occupational therapy's ways of knowing must be... welcoming of the experiences and perspectives of people with disabilities as valued contributions to our knowledge of occupation"(p. 202). Given that occupational therapy is Schizophrenia and Work concerned with the activities of people's lives it appears to be important to understand the relationship between productive activities and the experience of these if one has schizophrenia. Schizophrenia is a chronic mental, illness that affects 1 out of 100 women and men during the course of their lives. Any one person's chances of developing the illness this year are 1 in 2,000. Schizophrenia occurs with equal frequency in males and females, though the peak incidence of onset is between 15 and 24 years of age for men and somewhat later for females (Flaherty, Channon, & Davis, 1988, p. 57), at approximately 30 years of age. The diagnostic criteria for schizophrenia in Canada, the United States, Australia, and much of Europe is described in the Diagnostic and Statistical Manual of Mental Disorders (4th ed., 1994), or as it. is more commonly called, the DSM IV. To be given the diagnosis of schizophrenia the person must have experienced extreme distortions in thought content, such as delusions, and/or changes in his or her ability to perceive reality as in hallucinations. The person's ability to function in the areas of work, social relations, and self care must also be markedly below their highest level of function and he or Schizophrenia and Work 10 she must have experienced continuous signs of the illness for at least six months. . Even with treatment people with schizophrenia will often exhibit residual symptoms such as social isolation, peculiar behavior, impaired personal hygiene and grooming, blunted or inappropriate affect, odd speech patterns and content, odd beliefs, unusual perceptual experiences, low energy and lack of initiative (Flaherty et al., 1988, p. 63). The most common form of treatment for this illness is. medication; thus most people are on some type of neuroleptic. Although medication does provide symptom control, it does not ameliorate symptoms completely nor does it provide relief without some cost. All of the medications have side effects. The most common side effects include dry mouth, light-headedness, tremors, blurred vision, and akathesia. The common subjective experience as a result of the illness and its treatment include feelings of perplexity, isolation, terror, a vague sense of unreality or loss of control, and an increased sensitivity -to stimuli (Flaherty et al. , 1988). . The usual course of the illness consists of acute exacerbation with decreased ability to function between episodes (Flaherty et. al., 1988; Meyerson, Danley, Anthony, & Fine, 1991). Few people recover completely and Schizophrenia and Work 11 of the rest two thirds are chronically impaired or have-some disability and one third are incapacitated to the . degree they may need frequent or continuous hospitalization (Flaherty et al., 1988, p. 62). A number of other researchers (Anthony & Jansen, 1988; al., 1991; Reker, Eikelmann & Inhenster, 1992; Seeman, Littmann,' Plimmer, Thornton & Jeffries, 1982) have commented on the vast extent of impairment associated with the illness. For all that is known about schizophrenia, there are aspects of the disease which elude understanding, and as such "[s]chizophrenia continues to confront the individual and his or her family, the clinician, and society with a great personal crisis, a theoretical and clinical enigma..." (Flaherty et al., 1988, p. 57). The usual course of treatment involves brief but numerous hospital stays and some form of medical treatment in the interim. For those willing to participate there are maintenance and/or rehabilitation programs offered post-hospitalization. Maintenance programs are designed to provide structure and supportive contact in the person's life, as the person may not be able to plan and occupy his or her own time or have little social contact otherwise (Anthony & Jansen, 1984; Flaherty et al., 1988; Reker et al. , 1982; Seeman et al., 1982; Weheman et al., 1991). The Schizophrenia and Work 12 aim of rehabilitation is to facilitate the development of the skills needed by the person to improve his or her ability to function as a member of society. This aim is supported by Anthony and Liberman (1986) who state " . . . . vocational activity has remained a preeminent ingredient in current rehabilitation practices (Beard, Propst, and Malamad, 1982; Grob, 1983)" (p.543). This current focus in rehabilitation directed this study. As has been noted, schizophrenia by its very diagnosis, not to mention its residual effects and the effects of treatment, implies functional deficit at some, if not all, points of someone's life. This limited ability to function and its impact on the area of productivity as experienced by the person is what is interest. The focus of the research is based on four guiding questions. Firstly, what activities are conceptualized as productive by someone with schizophrenia? Secondly, what does he or she do that is productive or non-productive, as judged by him or her? Thirdly, what are the influences, general life experiences and related feelings and thoughts, that have had an impact on his or her behavior around activities personally described as productive? The fourth question asks to what extent does he or she believe having the illness of schizophrenia has impacted on the previous Schizophrenia and Work 13 areas of inquiry. Has having schizophrenia affected how productivity' is viewed, how productive one is, and if so, how? Thus, how is meaning ascribed? Meaning Kielhofner (1985) and McKay & Mirkopoulos (1996) agree that meaning ascribed in the present is based on past experiences, and the sense we have made of them. Urbanowski & Vargo (1994) call this 'meaning in life'. They also state that one's meaning in life is dependent on how one interprets daily events. Other authors state that meaning is both prospective and retrospective for "[s]ense, understanding, and knowledge could both precede and or follow action" (Brief & Nord, 1990, p. 13). To expand on this notion, Nelson (1988) compares the concepts of meaning and purpose in activity in a useful way. He suggests that the meaning of occupations is retrospective, while the purpose of occupation is prospective. That is, the meaning a person derives from engagement in doing comes from reflecting on past experiences. (Christiansen & Baum, 1991, p. 28). By stating that "[o]ur use of the word meaning includes both one's purpose and one's sense or knowledge about the Schizophrenia and Work 14 experience..." (Brief Nord, 1990, p. 13) it is implied that people do tasks to accomplish specific ends and that the reasons people give for doing tasks will change as a result of what they do. Therefore meaning not only has relevance in regards to past and present activities, but also to potential activities. Csikszentmihalyi (1990) demonstrates the description of meaning that most clearly identifies how the concept will be viewed in this research. He describes meaning based on the use of the term: Its first usage points towards the end, purpose, significance of something. It assumes that phenomena are not random ... like the purpose of life.... the second usage of the word refers to person's intentions ... What this sense of meaning implies is that people reveal their purposes in action; that their goals are expressed in predictable, consistent and orderly ways ... [T]he third sense ... refers to ordering information ... [T]he relationship between events, and thus it helps to clarify, to establish order among unrelated or conflicting information (p. 216). Schizophrenia and Work 15 It is also important to note that in all descriptions of meaning, it is viewed as' interrelational. This interrelationship can be between people, people and their experiences, and people and objects to name but a few. For example, meaning occurs when a person identifies something as a specific class, when an action is seen to lead to a set goal, or when a goal is considered within the context of one's life. In other words, nothing is seen to have inherent meaning. The interrelationships and meanings with regards to productivity, within the person with schizophrenia's life are what are significant in this research, and these relate to experience. Experience Experience in this study concerns the meanings, perceptions, views, and attitudes a person holds around an activity, as well as the physical and cognitive aspects of the person-activity interaction (Brief & Nord, 1990; Nord, Brief, Atieh' & Doherty, 1990; Ransome, 1994) . Experience refers to the person's ideas, opinions, and feelings about an activity within the context of his or her life. The exploration of each person's experiences can only enhance the level of understanding of schizophrenia and impact on the various components of the lives of those who have it, for it is believed that, depending on one's experience, Schizophrenia and Work 16 " [a]n occupational form can have a social or cultural meaning, an individual or idiosyncratic meaning, or little meaning at all" (Fidler, 1981; Nelson, 1988) as cited in Christiansen & Baum, 1991, p. 27. Following from this, the study was interested in how the men's experiences affected their beliefs about their abilities and thus how these, beliefs directed their actions. The following is a rationale for the research, what specifically the men had to say, and what implications this has for occupational therapy. Rationale for Study This research is significant at this point in time for a number of reasons. The literature demonstrates between a 60% to 90% unemployment rate for people with schizophrenia (Gmur, 1983; Gmur, 1991; Flaherty, 1988; Helgasen, 1990; Munk-Jqrgensen, 1992), while there has been an average of a 10% unemployment rate in the general population (Statistics Canada, 1994). Researchers have found that although medications improve symptoms, they do not improve a person's ability to work (Anthony & Liberman, 1986; Reker et. al., 1992), This finding may be related to the medication's inability .to •ameliorate all of the symptoms of the illness and also the influence of the medication side effects (Anthony & Schizophrenia and Work 1 Liberman, 1986; Flaherty et. al., 1988; Reker et. al., 1992). Symptomatology may not play as large a part in the person's employment status as once believed for recent-research has shown that employment status has no correlation with whether a person exhibits positive symptoms, such as delusions or. hallucinations, or negative symptoms, such as blunted affect or decreased initiative (Mueser, Douglas, Bellack, & Morrison, 1991;. Shtasel et. al., 1992). What did appear to be significant in the findings was that if a person experiences severe symptomatology of one type they will most likely experience severe symptomatology of the other type. This is significant in that it refutes 'common' clinical practice of viewing and treating these two groupings of symptoms as independent of each other. For a long time it has been thought that the prior employment status of a person would predict his or her future employment status (Anthony & Buell, 1974; Anthony & Jansen, 1984; Anthony & Liberman, 1986; Desisto, Harding, McCormack, Ashiikaga & Brooks, 1995; Flaherty et. al., 1988; Strauss & Carpenter, 1974). Conversely, others have found that one cannot predict future employability based on previous employment status (Helgason, 1990; Munk-Jorgensen and Mortensen, 1992; Reker et. al. , 1992; Solinski,. Schizophrenia and Work 18 Jackson, and Bell, 1992). Desisto, Harding, McCormack, Ashikaga, and Brooks (1995) found that what happened in the rehabilitation setting could also outweigh the benefits of past employment, for those who received rehabilitation services did better in all areas of function as opposed to those who received no rehabilitation. Employment status prior to the illness is difficult to determine as well, for studies have shown that many people with schizophrenia have had the signs or symptoms of the illness for one to four years before being diagnosed or treated (Flaherty et. al., 1988; Helgason, 1990) and one of the major criteria for diagnosing schizophrenia is a decrease in functioning for' at least six months prior to the diagnostic assessment (American Psychiatric Association, 1994). Thus it remains unclear as to the significance of prior employment status on future functioning ability in this area. Other studies on the employment of people with schizophrenia looked at their previous work environments. A common finding was that people with this illness did not function as well at tasks that contain noisome • characteristics (Link, Dohrenwend & Skodol, 1993; Muntaner, Pulver, McGrath & Eaton, 1993; Muntaner, Tien, Eaton & Garrison, 1991; Reker et. al. ,. 1992). Noisome characteristics are features of a task, which include Schizophrenia and Work 1 variations of temperature, dust or pollutants, noise, and or other physical irritants. Aside from these physical stressors, the psychological stressors of a work environment have been found to affect work performance as well (Anthony & Jansen, 1984; Anthony,.& Liberman, 1986; Muntaner et. al., 1991; Rubin & Rossler, 1978; Seeman et. al., 1982). The traditional way people have been helped to cope, with their susceptibility to the stressors, has been to provide them with sheltered work environments within sheltered workshops (Anthony & Jansen, 1984; Anthony & Liberman, 1986; Meyerson et. al., 1991; Reker et. al., 1992; Scholz & Krupa, 1989; Seeman et. al., 1992; Singer & Danion, 1991). There is little information on- the way that those attending them view these workshops. One local source of information is the book, Voices From the Edge (Widget Factory, 1992) put out by the members of the Widget Factory, a sheltered workshop within a community care team. The book consists of comments by the members on their lives, past and present and how the workshop can be both a positive and negative experience. This is an important consideration in that it has been found that people's health in general is adversely affected by performing jobs they do not like, even more so than by being unemployed (Graetz, 1993; Hammerstrom, 1994). This research raises Schizophrenia and Work 20 some interesting questions with regard to productivity. Does the perception of being productive influence one's health, whether employed or not? And can one be employed and not feel as if he or she is productive, or conversely, be unemployed and feel productive? Research in the field of work and unemployment offers some relevant findings derived from the general public both currently and historically. Many authors, such as Parker (1983), Primeau (1996), Ransome (1996), and Thompson (1984) suggest that traditionally and in some non-industrial, societies there was and is no distinct separation between how one views the activities of one's life. They propose that over the. past 100 years our society has separated activities of production from those that are not. Initially this was accomplished through religious belief, which deemed work an act of moral righteousness and leisure an act of moral failing. Then industrialization demanded that for an" activity to be classified as work it must be performed outside the home and for remuneration. Thus work has become thought of in the western world as an activity conducted away from one's home or for someone else, for which remuneration is received - usually monetary - and one that is not inherently enjoyable but one's duty. Any activity that does not fit these criteria is therefore Schizophrenia and Work 21 looked upon as non-work and those participating in these non-work activities are labeled as the unemployed. These researchers suggest that the division between work and unemployment has precipitated the difficulties experienced by those not seen to be working. Fineman (1987) states that our society does not educate its members to be anything other than productive and Benoit-Guilbolt and Gallie (1994) and Thompson (1984) postulate that people believe they need work and when they do not have work they expect to drift, to be useless, and to be bored, and become so. Benoit-Guilbolt and Gallie (1994), Fineman (1987), Hawthorn & Evens (1987) and Parker (1983). have also found that leisure does'not increase to take the place of work,.thus there becomes a paucity of activities in one's life. If these findings concerning experiences of not working are echoed in people who have schizophrenia they will add to our clinical and professional knowledge. . A review of the literature demonstrates that there is little agreement on the factors that predict employability other than the observation that people with schizophrenia are susceptible to stressors related to work. There is little to indicate' how the person with the illness views work or being a productive person in our society. Reker et. al. (1992) seems to sum up the rationale for doing this Schizophrenia and Work 22 study in saying "the lot'of each patient is ultimately determined to such an extent by individual conditions.. and background that adequate advancement is impossible without detailed knowledge of them" (p. 224). In medicine, there appears to be the beginnings of a trend to acknowledge the need for more input from the people who are living with medical conditions. The evidence of this can be seen in the writings of Good (1994) and Anderson and Bury (1988). Both advocate exploring 'lived experience', rather than just pathological processes, to understand more fully the human experience of illness. The usual way to gain this type of understanding is through the use of qualitative research. Marshall and Rossman (1989) state that a fundamental assumption within qualitative research is that "... the participant's perspective on the social phenomenon of interest should unfold as the participant views it..." (p. 82). There is also a growing emphasis from a number of different sources on the need for more consumer input into services. For example the document Closer to Home (The British Columbia Royal Commission on Health Care and Costs, 1991), the National Institute for Mental Health as.cited in a special issue of the Schizophrenia Bulletin (1992), experts in the area of vocational rehabilitation with Schizophrenia and Work 23 people with schizophrenia (Anthony & Jansen, 1984; Anthony & Liberman, 1986.; Reker et al. , 1992), and organizations for the advocacy of people with schizophrenia such as the British Columbia Schizophrenia Society all recommended more consultation with those who have the most at stake, in this case those with schizophrenia. Given these strong recommendations it is surprising that there are few qualitative studies in the psychiatric literature in the past 20 years. Qualitative methodology is consistent with the assumptions within this research because "...the qualitative view of the world is characterized as social anthropological, inductive, holistic, subjective, and process-oriented. '. ." (Roter & Frankel, 1992, p. 1097). Domholt (1993) adds that within qualitative research it is "... more useful to describe and interpret events than to attempt to control them to establish over simplified causes and effects"(p. 127). As well, many qualitative researchers view the end result of this form of research to be new knowledge or greater understanding of a particular are of study (Domholt, 1993; Hammersley & Atkinson, 1983; Patton, 1990; Roter & Frankel, 1992; Yerxa, 1991). It is this openness to subject input and the desire for new insight Schizophrenia and Work 24 that drives this research, and underlies the choice of research methodology. In Chapter Two the methodological approach, recruitment and analytical procedure are described in detail. In Chapter Three the men's experience of the illness, how they view themselves, their future plans, and the effect of the illness has on these is provided. In Chapter Four how the men chose to live their lives, and the role maintaining there mental health plays in these choices, is described. The final chapter summarizes and discusses the findings and implications for Occupational Therapy theory and practice. Schizophrenia and Work 25 Chapter Two: METHODOLOGICAL APPROACH Since this study involves addressing meaning and experience a qualitative methodological approach was used, specifically that of narrative. This approach was chosen for it allows the person directly experiencing the phenomenon in question to tell how he or she has been affected by it in his or her own words. The person therefore provides the interpretation of what is and is not relevant given his or her life experience. This methodological approach also enables the researcher to ' further develop existing concepts or new constructs that may refine existing theory or suggest possible alternative theoretical directions. Methods In this research project a narrative methodology was used. Generally the narrative mode of knowing "...privileges the particulars of lived experience rather than logical positivistic constructs about variables and classes. It is an effort to approach the understanding of lives in context rather than through a prefigured and narrowing lens" (Josselson, 1995, p. 32). Thus the person is asked to use a narrative structure to illuminate the meanings within his or her- personal experience. No Schizophrenia and Work 26 preconceived categories or limitations are put on the information'. Narrative The term narrative needs to be defined within the context of this thesis, for it has been used in a number of ways in the social sciences literature. Polkinghorne (1988) states that narrative is a "... kind of organizational scheme expressed in story form .... can refer to the' process of making a story, to the cognitive scheme of the story, or to the process" (p.13). For the purpose of this study narrative is described as a methodological practice for research, a process, and as a form of discourse; all within the context of making meaning. Before exploring how it was used methodologically, an understanding of how narrative is defined as a construct is required. Essentially a narrative is viewed as a way of making meaning within lives, by the people who live them. It is believed that a person will naturally connect moments in his or her life along thematic lines in order to make it a coherent whole. This enables him or her to make meaning through the explanation or understanding of how he or she has come to a certain point in life and how specific actions or events fit into the whole (Clark, 1993; Grumet, 1990; Josselson, 1995; Mattingly, 1994; Polkinghorne, 1988; Schizophrenia and Work 27 Savickas, 1993). Or as Grumet (1990) so succinctly states, "[njarrative encodes time and space" (p.107). ...Narrative meaning is created by noting that something is a part of some whole and that something is the cause of something else. Narrative meaning is focused on those rudimentary aspects of human experience that concern human actions or events that affect human beings (Polkinghorne, 1988, p.6). Narratives help people "... grapple with the confusion and complexity of the human condition"(Josselson, 1995, p. 32). Fairy tales, legends, novels or a conversation with a friend bears this out. It is important to remember that this encoding is not static. Over time events may gain or lose significance, the meanings attributed to them or the theme of the whole story may change (Josselson, 1995; Polkinghorne, 1988) . A narrative is one representation of meaning constructed at one time by one person within a specific context. It is not fact, but an expression of that one person's self knowledge at the point and place of the construction (Hammersley & Atkinson, 1983; Marshall & Rossman, 1989; Mishler, 1986; Polkinghorne, 1988). Thus it is important to consider that Schizophrenia and Work 28 a narrative is ,not an end in itself as much as it is a description of a process. This sounds somewhat confusing, but can be explained simply if one examines how time is represented in narrative. There is no strict adherence to chronological time. Time is secondary to the plot or theme of the story. Events take on meaning not because of their objective qualities, but because of their connection to other events (Chase, 1995; Clark, 1993; Mattingly, 1994; Polkinghorne, 1988). Meaning is constructed retrospectively. "We live life forwards but understand it backwards"(Kierkegaard quoted by Josselson, 1995, p. 35). Therefore as more events occur the significance of the past is revised." Even for an individual character a particular experience may take on many related but contrasting meanings as new experiences retrospectively change previous experiences in memory, and changes in social contexts and interlocutors may change the perspective of a character"(Handler & Segal, 1984, p. 15). Time does not stand still therefore a narrative can never be the definitive story. It has been argued that narratives do not accurately describe how people live time because a narrative consists of a beginning, middle, and end (Mattingly, 1995). It is true that for practical purposes narratives have those Schizophrenia and Work 29 components, for as human beings it seems that we need those reference points on which to base our understandings. At some point the story must start and end, to have some structure, in order for the teller make sense of the flow of experiences. This does not mean the narrative process has stopped, only that one set of events has been chosen as the impetus and terminus comprising a theme. Miles and Huberman (1994) also point out that events can belong to more than one theme or story line and that many plot lines occur simultaneously. Thus, there are always many potential stories that can be generated at any time or for any occurrence. It is the prerogative of the storyteller to choose from all these possibilities the boundaries and contents of each specific story. Narrative Relationships Since we do not live in isolation we at times will wish to convey our perceptions of events to others, or they, to us. One form of discourse is narrative. Not only is meaning constructed individually, but also between people. As soon as a story is told it is open to the interpretation of all that hear it. "Since the others will not have the same experiences, plot lines, or contexts as the story teller, their interpretation or the meanings they construct for the story will be their own. Of course through dialogue Schizophrenia and Work 30 or further inquiry a closer understanding of the storyteller's perspective can be gained. The implication of this is that there will always be some reinterpretatioh of the narrative by the listener (Fox, 1994; Hammersley & Atkinson, 1983; Handler & Segal, 1984; Mattingly, 1994; Miles & Huberman, 1994; Polkinghorne, 1988; Sayer, 1992; Van Manen, 1994) It is also important to acknowledge that the narrator will tell the story with the audience in mind. For example when one tells.of his or her summer vacation the story told to an employer will most likely be different than that told to a close friend. Both narratives are. descriptive of the same time period, but each will contain either different events or different plot lines. With all discourse there is consideration of the other, the audience, by the speaker (Fontana & Frey, 1994; Hammersley & Atkinson, 1983; Josselson, 1995; Marshall & Rossman, 1989; Miles & Huberman, 1994; Mishler, 1986; Polkinghorne, 1988; Sayer, 1992; Van Manen, 1994). This consideration of the other may manifest itself through the teller adapting the "story in order to: teach the listener; maintain a certain status in regards to the listener; answer according to what is perceived as acceptable to the listener; or in some cases deceive the listener. When exploring a narrative it is Schizophrenia and Work 31 important to be aware "of the relationship between the teller and the listener (or potential audience), the ' context .of the story telling situation, and the potential purposes of the story itself. Through this awareness a richer understanding of the material presented will be gained. For the purpose of this research topic a descriptive approach was chosen. It was hoped an understanding of 'what' productivity means, as it is experienced rather than abstractly conceptualized, would be obtained. The data was not be manipulated to make it fit an ideal, for "[t]he research does not construct a new narrative; it merely reports already existing ones" (Polkinghorne, 1988, p. 162). Narrative Interviewing To conduct a narrative interview the following methods are advocated: open-ended and non-directive questions, within a semi-structured interview format and a- setting appropriate to the domain of the research. Since narrative methodology is used to achieve a sense of meaning closest to that held by the research participant, the methods need-to allow the subject to take literary license. He or she needs to have the freedom within the research setting to create his or own plot line and thematic connections (Fox, Schizophrenia and Work 32 1994; Hammersley & Atkinson, 1983; Mishler, 1986; Polkinghorne, 1988). Control of the data making process is necessarily handed over to the teller and in that way the "... participant frames and structures the responses" (Marshall & Rossman, 1989, p. 82). The more limits placed on the range of response, the narrower the field of data. This inevitably means that the researcher must give up some control or the traditional power position in the research setting (Fontana & Frey, 1994; Fox, 1994; Marshall & Rossman, 1989; Mishler, 1986). In other words, the researcher is not responsible for directing the content of the responses, nor for providing the dominant voice in the process of information retrieval. The researcher's role is to empower the respondent to tell his or her own story, in regards to the area of inquiry, in his or her own words. As noted earlier though, some form of framing is necessary in order to make the information manageable. Here lies the fine line between facilitation and direction. In order to facilitate discussion some form of structure was needed to elicit the content and to organize it. Through assisting the interviewee in framing the information, the breadth of the discussion is brought into focus. Through understanding how the interviewee frames the information Schizophrenia and Work 33 the interviewer will stay truer in the understanding of the thoughts, ideas, and feelings that were expressed. Before going on to the actual process of the research, the issue of using narrative interviewing with this population needs to be addressed. Concerns raised include the validity of the data (Church, 1996; Dworkin, 1992), the influence of symptomatology on reality content, residual effects of the illness and or medications such as amotivation, concrete thinking, time distortions, and poor memory. The first concern was addressed to some extent via the selection criteria for the research. Exclusion criterion was used that excluded people from participating in the research if they are currently experiencing an exacerbation of their symptoms, in the form of psychosis. Through asking people to participate'in research which required them to tell the story of how they came to a point in their lives where they are no longer working or going to school, it was hoped those who were motivated to tell their stories would be those who applied, thereby addressing the second concern. Concrete thinking may have limited the range of connections made between events, and .required the interviewer to ask more direct questions when • seeking clarification on information. Dworkin (1992) and Stip (1996)- note that some people with schizophrenia suffer Schizophrenia and Work 34 from time distortions. For,example they may not know exactly how old they are or they may not be accurate when describing the length of time between events. Neither of these occurrences would negatively affect the information being sought through the research. The focus of the study was -not on the chronological order of life events, but on the significance of the events and the person's current life situation. The last issue is that of memory; the question being whether or not someone with schizophrenia is more prone, than the average person, to faults in memory that will affect the accuracy of the information. Goldberg (1996) states "[w]e have found evidence for memory impairment in long-term memory in schizophrenia on a variety of tasks. Deficits in semantic coding were also found, but not accelerated rates of forgetting, suggesting that while memory function was impaired it was not amnesic in nature." In testing memory deficits are noted, but not to the extent that events are totally forgotten. It should also be noted that according to Stip (1996), who has reviewed much of literature on cognitive deficits in schizophrenia, "... on any given cognitive task, only about half perform in the subnormal range" (p. s31). Schizophrenia and Work 35 • The issue comes down to whether people with schizophrenia can tell their own story. The stance that they can is advocated in "[t]hat persons with schizophrenia can provide.rational reports of their own experiences and thoughts has received support from the' National Institute of Mental Health (NIMH) and from other experts in the field" (Baier, 1995, p.203). As well as Baier (1995), other researchers have used interviews to explore experiences with this population with positive results (Alverson, Becker, and Drake, 1995; DeNiro, 1995; Hamera, Palilikkathayyil, Bauer and Burton, 1994). It is to be remembered that the point of this type of inquiry is not to determine what has 'factually' occurred for "...qualitative research focuses on the phenomenological world of the . individual to revel experience as he or she actually understands it rather than as eternally interpreted" (Rowles, 1991, p. 3). What is relevant is how the individuals with schizophrenia know and understand their lives. The ideal behind this interviewing method is that the interviewer is to be the audience.' Direction.or editing of the story is discouraged. As much as possible the narrator' is to be given control over the creative process (Marshall -.& Rossman, 1989; Mishler, 1986; Polkinghorne, 1988) . Schizophrenia and Work 36 Even with precautions and adherence to appropriate methods there is always the danger that the interviewer will disturb the narrative process and alter the story during the story telling process. In order to maintain the participant's voice the narrative inquiry model was used in this study. As well, indigenous typologies - participant's words and categorizations - were used when ever possible. Analysis of the Narrative As stated previously, a thematic approach to data analysis has been advocated (e.g., Hammersley & Atkinson, 1983; Marshall & Rossman, 1989; Van Manen, 1990) and is currently practiced (e.g., Frank, 1996; Larson, 1996; Polkinghorne, 1996). A number of approaches to identifying themes have been put forward in the literature, but only those relevant to this research will be presented. As this research is concerned with the meanings held by individuals, an approach which enables the identification of personal thematic constructions or "indigenous typologies" (Patton, 1980, p. 306, as quoted by Marshall & Rossman, 1989, p. 116) and their subsequent effect on further actions and constructions is needed. The analysis needed to focus on the sense made of events within the context of the individuals' lives as demonstrated through Schizophrenia and Work . 37 stories. Thus, themes were pulled from the content of the stories. Van Manen (1990) notes that a "... theme is not a thing; themes are intransitive.... Theme describes an aspect of the structure of lived experience" (p.87) and is at best a simplification of meaning or focus. In other words the fabric of the story is cut into discrete units which have intrinsic coherence, or make 'shared sense' to-the interviewee, the researcher and eventually the reader of the work (Mishler, 1986). What constitutes these discrete units is often based on the perspective of the person trying to make sense of the story. This deconstruction of the story then allows for multiple ways of viewing and understanding the story and its components-. Not all versions of the story have the same degree of importance for the given research area though. Those that appear to provide insight into the meaning of productivity were given more weight in' this case. In weighing the stories it was important to adhere to the notion of 'shared sense', as it became vital in order to preserve the voices of all those involved in the research. 'This shared sense of meaning is facilitated when "[t]hese readings are organized under thematic ways that attempt to do both justice to the elements of the research question and to the Schizophrenia and Work 38 preoccupation's of the interviewee" (Banister,. Burman, Parker, Taylor & Tindall, 1994, p. 57) . For this., research, the recommendations made by Coffey and Atkinson (1996) were followed. • They suggest using the categories provided by the participants for "[w]e can thus categorize the data more in accordance with the indigenous terms and categories of the culture or the individual informants" (Coffey & Atkinson, 1996, p.32). Themes of primary importance were those within the domain of productivity that described actions and the results of those actions, that illuminated the person's perspective or way of thinking about situations and actions (Miles & Huberman, 1994) and that implied how these actions and' there meanings will impact on the person's life in the future. What was included within the domain of productivity was driven by the content of the life stories. As noted before, the interviewees were considered co-researchers in the exploration of the meaning of productivity and as such were told not just any of their life stories, but their life story of productivity. It was a rather circular process in that the stories were told given a certain understanding of the meaning of.productivity and yet went beyond that cognitive understanding and enlightened further meanings. It was important to be aware of this process when Schizophrenia and Work 39 identifying themes, for there were more and less obvious themes based on both the interviewee's and the researcher's preconceived notions. These were driven by the internal content of the story, rather than by the overlay of specific theories or models. Once those were noted alternative ways of viewing the information was applied, based on' the current concepts held within the practice of occupational therapy. On a second level, the plot or point of the stories was considered. Larson (1996) identifies this form of analysis macrostructural analysis and states that it adds information on the goals and global schemes of the stories. Is there a common or consistent theme running through the story? Or more colloquially, is there a moral to the story? This analysis needs to be done, for as' Polkinghorne (1988) .. claims "the theme of the story is not usually directly presented'by the text, for it requires inference and interpretation on the researcher's part" (p.169). Coffey and Atkinson (1996), agree that "[interpretation involves the transcendence of 'factual' data..." (p.46). By attempting to understand a story as a whole, it also allows for a broader insight into both the person's sense-making processes and how the personal themes come to have wider significance within his or her life. After analyzing each Schizophrenia and Work 40 person's stories, a cross-person analysis of themes and the macrostructures was done. This provided different views of the components of the meaning of productivity and helped identify meanings that were common to a variety of people'. Because this research was being conducted in the context of the aim of increasing occupational therapy's ability to improve rehabilitation some thematic analysis based on the profession's theories was also conducted. The final stage of analysis consisted of comparing the themes identified to the current conceptualization of productivity that exists within the occupational therapy literature. Through this process it was hoped a greater understanding of the notion of productivity as it is experienced and conceptualized would be developed, thus further adding to the profession's body of knowledge. Data analysis strategies undertaken followed those recommended by Marshall and Rossman (1989). They state that "[a]nalytic procedures fall into five modes: organizing data; generating categories, themes and patterns; testing hypothesis against data; searching for alternative explanations of the data; and writing the report" (Marshall and Rossman, 1989, p. 114). Through these modes the data is not only reduced, but also interpreted or understood. The first four procedures took place at all stages of the Schizophrenia and Work 41 research once data collection had begun. Thus data collection and analysis were a reflexive and fluid procedure. These strategies allowed for the data analysis ' process to take place as outlined. Research Design Participants Inclusion criteria were men between the ages of -.20 to 50, who had had a diagnosis of schizophrenia for at least -two years, lived in the community, attended a community care team, and. were not currently participating in work or education oriented, activities. Men were chosen because in this age group there are statistically- more men with schizophrenia as men have an earlier onset of the illness. As well there may need to be a distinction made between the experiences of men and women when it comes to the notion of productivity. Men have traditionally been seen to be the ones with more roles to fulfill outside the family. Cook (1992) states that "[a] comfortable fiction held by many people today is the differences between the sexes are rapidly disappearing, that in a short time we will be free to be ourselves as individuals, regardless of our biological sex" (p. 227). In other vocational literature the notion that men and women continue to approach productive pursuits differently is supported as well Schizophrenia and Work 42 (Santrock, 1992; Sundal-Hansen, 1987; Yang, 1991; Zunker, 1990). Unfortunately, in the area of mental health and productivity many papers do not make the distinction between men's and women's experiences. Given that we live in a gendered world it seems inevitable that one's life experiences may be affected by one's gender. Due to the size of this study it was determined that it was too small to do justice to the issue of gender, and that if gender were not addressed the study would continue to perpetuate the notion of the non-gendered patient. The rationale behind the age criteria is that developmentally, within western society the ages of 20 to 35 constitute the time when people develop and actualize their productive potential (Christiansen & Baum, 1991; Salome & Mangicaro, 1991; Santrock, 1992; Wortley & Amatea, 1982). A diagnostic criteria and duration were required to provide a minimum time frame for. which one specific illness has been experienced. Having a diagnosis of schizophrenia for at least two years implies that one has had time to both experience some effects of the illness and to reflect on that experience. By living in the community these men would not be limited in productive pursuits by the confines of an institution. The requirement to attend a community care team denotes that they were receiving some form of Schizophrenia and Work 43 treatment. Thus they were within the system designed to treat and remediate their illness and.would have had the opportunity to participate in traditionally productive, endeavors, but for some reason had not. Recruitment Procedures The participants were to be recruited through a written request to the manager of rehabilitation service's at the Greater Vancouver Mental Health Society asking her to post research notices within the services community sites. Potential participants would then be asked to either contact the researcher by phone or to sign up on a list for more information. The researcher was to then call these individuals. Originally this study intended to recruit 10 men through various mental health organizations in the Lower Mainland. It eventually became obvious that this was not likely to happen. The only volunteers for the research were-5 men who had been through a Schizophrenia Rehabilitation Day Program in the past 5 years and had previously met the researcher at the Program. All had been involved groups or activities she had run-, but none of these volunteers had been under the researcher's primary care. All of the men,• ranging in age from 22 to 4 9 who participated in the study completed both interviews. Unfortunately there were not as Schizophrenia and Work 44 many volunteers as had been hoped for. Low numbers of respondents could have been to the fact that having schizophrenia is still shrouded in stigma and that the symptoms of the illness include paranoia or suspiciousness. Time to complete the research and a limited cohort of individuals were also contributing factors the low numbers of participants. Fortunately the men who did volunteer had a variety of ethnic backgrounds and experience. Two lived at home with at least one parent and siblings, one lived in a group home, another in a rehabilitation boarding home, and the fifth in a shared apartment with a roommate. When being recruited potential participants were informed that this study would involve them telling their story about how they have arrived at their current circumstances and what those were. They were asked to commit to two meetings with the researcher of approximately one to one and a half hours in length. During the first meeting the interview was performed. During the second meeting the interviewer ensured that she had accurately understood the information shared by the interviewee and concluded the initial interview process. None were actively psychotic, aggressive, or had extremely impaired cognitive abilities. Each person was informed of his anonymity within the research. . Schizophrenia and Work 45 Participants were informed;that the information obtained from them would add to the general and occupational therapy knowledge base about understanding the affect of schizophrenia on a person's ability to be productive, and that it was hoped that through this understanding the quality of services provided to those who have the illness would be improved. Initial contact with the volunteer was made over the phone. Questions were answered and concerns addressed. At. that time, if the person chose to become a participant, a University of British Columbia letter of information and consent form was sent, and a time and place to meet was established. The participant chose the place and the time, though the latter needed to be negotiated from time to time. The interview process was initiated once the consent form was signed. Interviews The first interview was initiated following brief introductions. The interviewer then asked the study participant about their understanding of the interview and their reasons for participation. The interviewer then described the general process of the interview. This description was similar to•the following: v[t]his interview may be a little different than some other interviews you've Schizophrenia and Work 46 had in the past. It's called a narrative interview. A narrative is like a story. This means that when you describe things you can include a lot of different details, like you think something happened, how you felt about it, what you'd change if you could anything. I will probably ask you a few questions from time to time, but I'd really like you to talk about what's important to you. Feel free to tell me anything you want and ask me any questions. If you aren't sure why I asked something, let me know. Remember that this is your story, and what matters is how you see things and how you feel about them. I'd like you to tell me about how you spend you time right now.' After this description was given the interviewee was asked what he did before he became ill, and what events had influenced the activities he was now doing. Once this was done the interviewee was asked to tell,the story of one of these events and to go from there. Questions from an interview guide (Appendix A) were used throughout the interview when clarification was needed or the interviewee was not sure how to proceed with his story. Questions, which represented cues to what is traditionally held to be within.the area of productivity, were noted when analyzing the data. : Schizophrenia and Work 47 At the second meeting, with each of study participants the researcher brought a written synopsis of the stories collected at the first interview. These were discussed with the participant in order to determine whether they accurately represent his experiences. The participant was then encouraged to modify the story to better represent what he was trying to say. Any questions or concerns at this time were also addressed. Stories changed given that it was a different day and the participant had had time to think about the last interview. A change in story was noted, and the circumstances around it. It was important that the participant felt that his story had been told and heard as accurately as possible. It was difficult to obtain stories of any length from the participants. Some of the men appeared to have a degree of poverty of thought and others became tangential or lost their train of thought during the interview. Occasionally the researcher had to remind the participant of the topic of conversation. Although the stories obtained were perhaps not as rich as with a population of non-ill men, subsequent elaboration and explanation of information by the participants expanded the depth of data. On other occasions a participant would refer to shared knowledge of the past that was uncomfortable and.although Schizophrenia and Work 48 not stated directly during the conversation, expected that the researcher would understand the reference. For example one mentioned that he didn't "hang around parks anymore", referring to stopping his past activity of having sex. with strangers in.park washrooms. And another talked of the "illuminati", or the spiritual police, referred to in previous discussions. It appears that having some previous knowledge of the interviewer made it more comfortable for the participants to discuss their personal lives and feelings. A need to impress or a fear of the consequences of the interview may have also been lessened. All commented they were glad to have had the opportunity to participate. Their experience of how their concerns and issues had been treated in the past by the interviewer may have added to their comfort level.. They all requested having their interviews at the UBC Hospital site and stated they appreciated the opportunity to come back. Many also visited other staff of the program after their interviews. One was met at the student union building, one in the OT assessment room, one in the SRDP client day room and the others in the hospital cafeteria over a coffee or soda. Some the participants also valued the opportunity to be able to help the researcher or feel Schizophrenia and Work 49 as if they were doing something of value for others with the illness. All of the men were seen over the summer and fall of 1999. The interval between interviews ranged from 3 weeks to two months. The intervals were based on the participants' availability. Each interview was taped and transcribed later. Brief field notes were also recorded after each interview. Interviews lasted from 2 0 minutes to over an hour and the typed transcriptions ran from 16 to 80 pages, depending on the participant. Trustworthiness of Data• ' Many features of the research process contributed to the trustworthiness of the data. The first was the fact that all the participants had had a previous relationship with the researcher in which trust had been established. All of the men had attended the Schizophrenia Rehabilitation Day Program where the researcher worked as a group leader. The men had participated in group activities and shared private aspects of their lives with the researcher at this time. These interactions had been positive and as validation of this, all of the men stated they were glad to come back to participate in the research with the researcher. Schizophrenia and Work 50 Since as the researcher, I had had previous interactions with the participants I some idea the authenticity of the stories being provided. I was able to compare the data obtained in the interviews with what was already known of the participant. All of the stories provided seemed genuine and no contradictions were evident. The third contributing factor to good data was that the men were given control over the choice of interview environment. They chose environments in which they knew they would feel comfortable and were thus better able to discuss the details of their lives. An aspect of research process, that also enhanced the quality of data, was that of bringing a synopsis of the first interview data to the second interview, and allowing the participant to add, change or elaborate on their stories. Much of what they had said in the first interview was validated and provided a foundation for further exploration of their lives in the second interview. The last factor that contributed to the trustworthiness of the data was that of the clinical experience of the researcher. I, the researcher have worked in the mental health field for twelve years, and with persons with schizophrenia specifically for the last six years. My clinical experience greatly has enhanced my Schizophrenia and Work 51 interview skills with this population, and issues such as tangential and concrete thinking may have been more easily-addressed and adapted for during the data collection because of this. Introduction of Participants The individuals who chose to participate were all men who had contemplated work or returning to school when starting the day program, but had not by the time of the interview. They all received Disability II, which is a.form, of social assistance for individuals with severe handicaps. They would receive $80.00 a month if in a group or boarding home and $720.00 a month if not. As well, all men were on medication, taking it as recommended and being followed by a mental health professional. In the text the names of organizations have been kept but the names of the participants and all individuals have been changed and a pseudonym used in its place. One participant had a more ethnic name but this has been anglicized due to the word associations used to change all the participants' names. Sonny Sonny is a young Canadian born Caucasian man in his early twenties, who lives in an all male rehabilitation boarding home close to the beach. He plans to move to the coast on Schizophrenia and Work 52 his own, closer to his father, in the coming months and has found a place to live there. He has continued contact with his family and maintains his relationships with friends. Some of these friends were actually the ones who initiated Sonny getting help for illness. They encouraged hospitalization for him when he started to have problems while on a cross Canada tour with their band. He recalls that this' was not the first time he had problems, as for' years he had been experiencing odd thoughts and auditory hallucinations. Sonny sees himself as being part of the young alternative crowd and sports the appropriate facial hair and wears skateboarding clothes. He divides his time between "hanging out" with his friends skateboarding or playing basketball and playing or writing music. He occasionally busks at the beach, but does it not so much for the money, but to share his music. He receives Disability II benefits and takes medication for his illness. His family and friends are supportive of his lifestyle. Sonny finished high school and worked on and off in restaurants from 1995 to 1997 but always quit because of problems with delusions and hallucinations. He blames some of his past delusions on street drug use, which he started when he was 14 years old. He receives medical follow up Schizophrenia and Work 53 from a General Practitioner and a Health Unit and currently ' takes Olanzipine and liquid Epival. (See Appendix B for medication description) . Seth : Seth is a Caucasian man of eastern European decent .in his mid forties, who has lived with his roommate in a subsidized apartment for several years. Seth has been ill since his early twenties and his roommate, Bob, has some, psychosocial problems - both are on Disability II. One or the other usually has a girl friend who does much of the cooking and cleaning, though at present they are doing this for themselves. Bob's last girlfriend-died at the same time as Seth was in hospital for his heart-attack in 1998. Since this time Seth and Bob have been more involved in mental health program activities and the community in general. Seth has also had a long-term friendship with a woman 30 years his senior, who shares his belief in the illuminati (spiritual police). This friendship has lasted for over 20• years.'Seth has spent time in the past writing about the illuminati and has a binder full of material that - at times he adds to or tries to get published. He usually decides not to publish this material when he becomes concerned for his safety because of his fear of the illuminati. Schizophrenia and Work 54 Seth completed high school in Canada, took a plumbing course, dropped it, then took a waiter training course in France and worked as waiter in Canada for three years. He lost his job around the same he was first diagnosed and hospitalized. He didn't work until ten. years later when he lived in the woods for two years looking for jade. He has not worked since then. In total he has been hospitalized three times and attempted the Schizophrenia Rehabilitation Day Program four times. Seth is followed by a community mental health team and is on Warfarin, Aspirin, Haldol, Benztropine, Lithium, Nitroglycerin, Aptropril and Metoprolol. Russ Russ is an Ugandan born Ismaili man, in his mid thirties, who was raised in England and moved'to Canada after high school. He became ill in his early twenties and lives in a mixed gender group home. He had lived most of his life his parents, but they are quite elderly now and have encouraged him to be more independent and live away from them. Russ is very interested in people and spends as much time as he can around others. He will often initiate conversations with strangers if he feels it is safe to do so. He fancies himself a bit of an intellectual and enjoys chances to show off what he knows. He has few friends, but Schizophrenia and Work 55 does maintain superficial relationships with his family-members . ' ' ' . . Russ completed his "0"- levels in England and graduated from high school in Canada. He completed some university and college courses and has a number of continuing education courses. Russ worked for 6 weeks in England at a large chain store before moving to Canada. In 1981 he worked for a student business for three months. On three -different occasions in the 1980's he worked making computer security cards and was laid off each time. .He has been hospitalized six times over the course of his illness. Russ is on Disability II, is followed by a community mental health team and takes Buspar and Rispiridone. Tim ... Tim is young Canadian man in his mid twenties, who has been ill since his teens. He lives with his mother and younger brother in a town house in a central location in the city. In the past he has lived for a month in the downtown east side and for a year in Riverview Hospital. He has to share his room with his brother, as there are only two bedrooms. Tim and his brother have not always been on good terms as when ill Tim becomes aggressive towards others and is also abusive to the family pet. Currently their relationship is Schizophrenia and Work 56 agreeable. Tim's mother is very supportive, but also understands the need for limits with her son. Tim seems to respond to these rules and does what he feels he can. He is a bit of a loner and although he would like contact with other people his age he doesn't want to be the one to initiate it. His favorite thing to do is listen to music. Tim dropped out of school in grade eight, tried to go back, but did not finish grade ten. He did odd jobs for two years in which he usually quit, though the last one ended when he was hospitalized after slapping a stranger. He notes he was smoking pot and doing LSD at this time too. Tim has not worked for six years. He currently receives Disability II, is followed by a community mental health team and takes Clozapine for his illness. Liam Liam is a Canadian born Asian man in his late twenties. He lives with his parents and one of his sisters in his parents' house, but has difficulty living there because he-does not get along with his sister. His dislike of her seems to stem from his illness as this dislike gets worse when he is not well, though sibling rivalry cannot be ruled out. Liam has always viewed himself as an athlete and an artist. He spends as much' of his free time as he can Schizophrenia and Work 57 playing basketball with his friends. His participation in art often depends on his mental health, for he doesn't like to create a work of art when the result will be "tortured" looking. When ill he also experiences negative and paranoid thoughts. Liam was first seen by a psychiatrist while he was in high school, dropped out and was then hospitalized. He then completed his General Equivalency Diploma. Liam worked as a shoe salesman for a .few months in 1993 but quit to go to college. In 1994 he worked as a photo•lab technician for a month in a large store, but was laid off for not working fast enough. He has subsequently done volunteer work for a period of a month. He is currently followed by a private psychiatrist, takes Respiridone and'Benztropine for his illness and receives Disability II benefits and occasional income assistance from his family. Environmental Context. The research was conducted with men who live in a large multi-cultural urban center on the West Coast of Canada. The area consists of the city proper and a number of connected smaller urban centers. All combined the region is approximately' 60 by 40 kilometers in area and contains just over 2,000,000 people. Schizophrenia and Work 58 Places traveled to by the participants within the region ranged form the city center to outlying areas such as Steveston. In actual one way bus transportation time Steveston is one and a half hours away. Most of the travel the men did during their days, to club houses such as that of the Coast Foundation (Coast) or the Mental Patients' Association (MPA), was closer to home with the average trip taking 20 to 40 minutes by bus. Bus transportation time is used because walking and public transit were the men's usual mode of transportation. One of the men lived in a mixed gender group home which provides a supervised living situation that provides meals and monitors medications. The residents there are responsible for doing chores and participating in activities in the community. This differs from the boarding home another man lived at, in that the rehabilitation boarding home provides opportunities for and requires its residents to be engaged in becoming independent and thus eventually living in an unsupervised setting. The rehabilitation boarding home focuses more on skills training than does the group home. Another man lives' in a subsidized apartment that the government partially funds through assistance with the rent. Schizophrenia and Work 59 ..The organizations the men used consist of the MPA, Coast Foundation, Pathways, community care teams, and community centers. The MPA is an organization run by and for persons with mental illness. They offer advocacy, education and outreach, court services, supported housing, and a community center for people with a mental illness. Coast Foundation offers a wide range of services for clients with mental illness, such'as vocational opportunities, social activities at the Clubhouse, assistance with transportation and residential services. Pathways is another clubhouse, like Coast, for persons with mental illness. Community care teams are mental health centers that offer psychiatric medical follow-up, rehabilitation and maintenance programs.' The men alsc attended community centers that offer a wide range of recreation and leisure activities to the general public^ One .of the men mentions Riverview, which is a large long-term psychiatric hospital. One needs to be very ill and require, hospitalization of several months; to be' placed there. This same man mentions skid row, which is an area in the down town.core of the city where many people with little to no income and often addiction-problems live in cheap hotel rooms or on the street. Schizophrenia and Work 60 The following chapters contain the results of the-interviews and the subsequent themes that arose from them. Three general thematic areas appeared to surface. The first is the belief that not becoming ill again was primary motivator in all that they.did. This came as a surprise in that they placed more emphasis on 'being' well than trying to 'do' things and all activities were driven by this. The second was the need to stay occupied since it helped them to stay well and yet not become stressed by the things that they did. And the third was that spiritual beliefs played a large part in staying well, coping with the illness and a deciding what to do with one's time. The first chapter explores the men's productive histories and their subsequent impact on their current lives. As much as possible the information has been documented in the men's voice. At times it may read as being somewhat awkward, wordy or disjointed. This may be due the effect of the illness on their thought process. Whatever the cause, it is presented as given by them. Schizophrenia and Work 61 Chapter Three: THE MEN'S EXPERIENCE OF THE ILLNESS What The Men Were Doing When They Became 111 All of the men had been participating in what are deemed traditional productive activities when they had become ill. Two were in school and the other three were-1 . holding down jobs. Each told of how their illness had negatively effected their performance. Seth, for example, explained: .I was twenty-three years old. Waitering at Harrison Hot Springs and I had two years of training and a year in maitre'd training ... to be a waiter and this really hit me ... Uh, I ended up in the hospital, I went to Montreal to see Pete, a friend of mine named Pete and from Montreal we came back and then I was put into the hospital by ambulance, they said I was up all night and agitated which I don't remember and I went into the hospital, that's been rectified, I understand it a little more clearly why I was hospitalized at that time, you know, the factions there .... (My illness) doesn't stop me from going out to do things but its stopped me from realizing.all the college I've had and all the high school I've had and the training I've had in•Europe when I was there, how that's limited me now that I can't utilize that to the best Schizophrenia and Work 62 that I can manage now so I have to structure my time in other ways and that's what I'm dealing with now. (Seth) Yeah and my last job just two, three years ago, the radio, all the songs were playing songs that were speaking to me, directly to me (laughs) and just not completely understanding what was wanted of me, um, having to ask for help from some music people because I just couldn't find something. (Sonny) Sonny believes his work was affected because of the delusions from some auditory hallucinations, some visual hallucinations and depression: ... and depression was really hard because I really did not want to go to work .... Several times what caused my delusions and everything to happen was just particular events some night, um,. usually with drugs . involved especially LSD, that's how I first had my delusions and anyway I started having the same delusions that I had the first time and so after awhile I just had to quit (trying to work). Liam was on an academic track when he became ill: I went to school here academic at Churchill, academically people emphasized university so I wanted to be in there but then I got sick and then, then the Schizophrenia and Work 63 last resort, the only job I could do was to become an artist because I don't have to work nine to five I would guess. Both Russ and Tim have stories about how their illness affected their performance of productive activities, but did not relate them directly to what they are doing now. Russ is somewhat ambivalent about the effect of illness but said: But I work, I guess two years I suppose but I left because my brother took a holiday and because he didn't come I thought' there was something, I couldn't go in, when I walked down the stairs and I just couldn't think of the next step, what to do, you know.... So my dad said I was sick and I should have phoned in sick, you know, but I didn't phone in sick and I lost the job because of some dispute, you know, because this guy took us to this union and I don't know but I don't think I was because my brother said it was a shortage of work so that's why I got laid off. . Tim's illness began when he was quite young: . No, I, uh, dropped out of grade eight, went back and did it again, passed grade nine, passed grade ten, passed with summer school grade ten, dropped out half Schizophrenia and Work 64 way through grade eleven,•went to a different school, dropped out in grade eleven again. I have a grade ten • education. In high school Tim had aspirations of being a biologist but ... my grade ten counselor when I was in grade ten told me that it wasn't realistic because my grades were not good enough and I wasn't getting that good grades in math and stuff so he sort of said that I wasn't realistic and sort of put me down like put me down right. After this Tim contemplated becoming a truck driver or carpenter. All of the men had had experiences where the illness had interfered with their attempts to be productive in a traditional sense. Their work and academic performance had suffered due to the symptoms or signs of Schizophrenia. Where They'd Like To Be When contemplating the future the men's experiences seemed to seep into their dreams. They had dream jobs and aspired to more than they were doing now, but didn't believe that their aspirations could be achieved, much as Tim noted earlier. Schizophrenia and Work 65 Future Vs.Reality: "my long range plan depends oh how the illness affects me" noted that at some time in the future he would like to have a career, but was willing to settle for something less than he had aspired to. Most related their lowered career expectations to the anticipation that the illness would negatively impact their abilities and to-uncertainty about the potential level of these abilities. Liam commented: I, uh, I still have my long range plan depends on how the illness affects me and how it plans out, the, uh, my dream, my motivation is to be a renowned artist so if I become a working artist, I wouldn't have any more worries, the career which would make a living for, hopefully make a living for me but I'll always be, always, uh, would like the career, an artist would help pay the bills but if I don't become a real artist, I plan to be a taxidermist, I think I mentioned it before. Sonny states " When I got, when I turned twelve and got a guitar.... And ever since then I've known it's been my destiny to become a rock star ... a musician I've already accomplished." But for the time being: Schizophrenia and Work 66 I've decided just to start my own things going just myself and have people come in and help me with songs like extra musicians but I think I'm going to do it • myself.... I'm actually just going solo right now but I'm willing to have sort of a jam studio, lots of people play music so I'll be playing all the time. Russ wasn't sure what he wanted to do: Well, I don't know, perhaps some job in engineering somewhere, I don't know, maybe not but like maybe, um, teaching engineering, some courses in engineering, physics course or a math course and I'd be a grade -twelve teacher.... But, well my father said be a mechanic,, at first I was against the idea because I • wanted to go to university but then I might take it up because I'm like my Imam says like, be, like he said go into technical fields.but that doesn't really mean like collar workers, it doesn't mean blue collar workers..... Because that's what it's meant if I'd like to be a mechanic, it's a blue-collar worker, right.... So I might be a mechanic and plus, of course, when I was studying, you know, my Imam said it's only the faith of your father, he's going to leave a piece of this for the business so, you know, it's part of his faith.both of us being a mechanic, you know. Schizophrenia and Work 67 Even though he seemed motivated to follow his father's bidding, when asked whether he- is pursuing this he states: No, at the present moment, but I read my economics book from school' that I get, you know, in England and I want to take formal education at Kwantlen College, I want to take Mandarin because they offer that at Kwantlen because, you know, because I can get to know other cultures and for my own peace of mind, you know, I'm making an outreach to the Chinese (laughing) you know, because I'm in trouble if we don't consider their culture and things, at least give them a break, you know, give yourself a break too, you know. According to Tim: Um, I considered being a truck driver, I considered being a tradesman like mechanics or carpentry and, uh, that's pretty much it.... But lately I'm really discouraged about working or having a career and stuff because I just feel unmotivated and what not.... Well I haven't, I don"t think I've ever really been disappointed about not accomplishing something because my, I never really wanted to accomplish something really big time, I was always having, you know,' ideas about what I should do in the future but, um, that's it.... Its been a, its been a goal though so like if I Schizophrenia and Work 68 had a goal that I needed, which needed to have high school education, then I would do that but I don't have any goal, nothing to motivate me. Seth still has thoughts of going to: Some ski resort up in the mountains where I was before and see if I can work and just put myself in a situation of either work or you starve because you don't have unemployment insurance or welfare there, maybe get into a program there and handle it that way.... I'd take a refresher course here before I do that to get my papers for college, restaurant management. But "I can't even work a four hour shift, they told met that wouldn't be an option to work." Although Seth relates his inability to work to his heart attack he has not worked since he first became ill, over twenty years ago. All of the men had modified their aspirations to better suit their perception of their potential abilities. The best they could hope for now, in relation to work, was much less than.had hoped for prior to the illness. Fathers' Footsteps An interesting sub-theme was that of the sons wanting to follow in their father's footsteps. None of them directly stated that they wanted to do what their fathers Schizophrenia and Work 69 had done, but when comparing their current aspirations to their father's career it became evident. Liam's father had been an artist before moving to Canada and even though he eventually became a farmer he practiced taxidermy as a side business. Sonny's father is a practicing musician'. Seth's father worked initially at a blue-collar job, but has not worked in many years due to a physical disability. Tim's father is a carpenter and Russ's father had owned his own business prior to coming to Canada and had been well educated for a man in Uganda. What's Stopping Them Concerns About Cognitive Abilities: "I've been standing in front of a brick wall saying there's no-way around..." The men also had concerns that they weren't presently well enough to go back to school or -work. They thought the demands of a job or a class would be more than they could handle at present". Liam provides an example of a current concern: Officially the job description, my title is called scout counselor, the thing is that, uh, I will, after ten, after ten, he's the group scout leader and I, he wanted to put me in charge of the group. The big cheese for the entire day, but with a diagnosis of schizophrenia I can't hold the job as entire, the Schizophrenia and Work 70 group scout leader because I have to make important decisions about a kid's life and we affect on those kids at young ages. Because we, we're in the business of training them to be future leaders, that's our mission and mandate of the purpose of scouts in the world is that we mold and influence, we develop kids spiritual, emotional, mental and physical potential to prepare them to be the future leaders of our country. So because I'm very good friends of Dr.No he could have promoted me to a very high level in scouts to be entire group leader.but because of this I was still sick at the time, I didn't want to hold that position because it would be too much stress for me and with my mind playing tricks on me I can't make the proper decisions to guide and lead these scout movements. So that's why I declined to be promoted to a high level, I remained just a scout counselor where I just help and help out the main leaders to do the program. For both Russ and Tim, a lack of confidence played a role in their not participating in work or school. In Tim's case: Yeah, after I was like doing drugs and stuff when I was tinkering around, you know, helping my father do some things and I just was really upset because my Schizophrenia and Work 71 motor skills were bad, it was hard to concentrate and I didn't know what I was doing.... No, I wouldn't say its depressing, urn, I sort of feel like I couldn't handle a job right now as well as I used to, so.that sort of keeps me from looking for one. ' Russ states: Urn I'm not confident enough, why haven't I got a job? I'm not confident enough with my abilities, maybe I don't have any so I just don't have abilities and I don't feel that I can do this, do the job but I think that things are going good, look up, might get the chance to get the job, get a job but ultimately I -think it's God will. Seth feels at a standstill with his situation because: I've got to see what I've got and what I or how I can use with what I have to'get to where I'm going to and there's stumbling blocks along the way in the thinking process maybe-but its, uh, it's a thinking process that I need to sharpen. He goes on to say: Well I have to realize what I've got now and where I want to get to and how I'm going to get there, I've got to write all this down and figure out my priorities, put it all on paper and say this is what Schizophrenia and Work 72 I've got, this is what I want, this is how I'get there, these are my priorities to handle this and then handle it from there.... Doing a logical, systematic way to do it, I'm not logical that's the problem (laughter). Myself and my own insecurities and I feel that I want to do things and I'm too insecure to go ahead and do them, take a risk, I look at the risk and I'm not willing to take that risk for some.reason, the results of it might be too disastrous and then I'd fall flat on my face and I didn't, and I don't want to do that. So I've got to learn to accept what is, take a.risk and do something and then if it doesn't work, fine, do something else, but don't just stand there and say I'm in front of a brick wall and I can't get any further.... And that's what I'm doing, I've been standing in front of a brick wall saying there's no way around. Stress and Thinking About Work/School: "I can be at peace a little bit better because without worrying about the future" and stuff..." These men did not follow up their plans to'return to school or most of the men found it too stressful to even spend time thinking of returning, so avoided it. When Tim Schizophrenia and Work 73 was asked about whether he was thinking of working he stated: No, that's why I find that there's not much to think about so like you can be like, uh, I can be at peace a little bit better because without worrying about the future and stuff, I can be alone and be stressed out about lots of things, I stress out about a few things but I'm pretty much okay with what I'm doing, I'm not home stressing about jobs and stuff so that's good. He added: Urn, well, the only feed back I get from it is my mother and she thinks I should do something with my days like a job or something but I sort of just, I don't have that need to do that because I, um, I feel fine with what I'm doing right now and I get really depressed, well not really depressed but, you know, if I have to think about needing a job I get a little bit depressed and that's why I haven't been doing anything because I've been just fine living with my family and watching TV and listening to music.(Tim) Seth explained how he coped: Uh, there's, like you've got to have a positive mental attitude to, uh, to just go ahead and do it without thinking of the ramifications at all and well, what Schizophrenia and Work 74 would happen if I did work and how long would I work and what would I do, all these questions keeping coming at me and I say ah, its too much of a bother (laughter) so I sit back and then I say do I really need the aggravation of going out and finding work... Liam was concerned about his peace of mind, but also about his ability to cope with the stress of actually working or going to school. The peace of mind of keeping to myself and also my mental health, there's a peace I'm looking for and I haven't got the stresses any more from work or from school but I know I have to be able to recover and take the stress if I want, everyone has to go to work and if I go back to school, I have to take on the challenges. Actually I enjoy- school but, uh, the finals that, mid terms that stressed me out, uh, otherwise I like learning, I like going to school and studying whereas just, the tests, that stressed me out, that part I couldn't handle, the good parts of school... I worked part time so I don't have to be stressed about a nine to five job ... Sonny states that he no longer is considering going back to work "I've realized that I can't work anything other than what I love doing which is music..." Schizophrenia and Work 75 Not only what the men felt they were capable of doing had been altered by the illness, but also how they viewed themselves. ... How They See Themselves Now." Change in Self Each man talked of a change in him since the onset of the' illness. Seth knows he has changed, but cannot identify how: I'm just developing, I thought I knew who I was and lately I'm beginning to see that there's a lot more to who I am than what I think I am because what I think I am at times is my perspective and yet other people see me as a different individual, so I've got to realize and listen to other, people's view points and its in a melting pot within me to see who I am. For the others they noted the negative changes in themselves. Liam talked at length about how his experience has humbled him: For me, urn, with this illness, this illness has shattered my peace of mind, I think there's so long because I was sixteen, that's almost half my life, •half of my life I only view, I didn't know what it really meant to be well, half'my life, all my life it seems like all I go with and I would say the thing is Schizophrenia and Work 76 that the peace of mind that I had before that, I knew I was okay, I didn't have to worry about my health and it really shattered it.... The thing is that, uh, I got to be a bit, pretty arrogant so I changed that perception and I heard that, heard that everybody is basically the same, its just their attitude that makes them different for awhile, so I changed my attitude. So I kind of like, urn, sort of chose to forget about my self identify and self worth because I thought myself to be too arrogant so I let go of my self identity, I don't think about it anymore.... So I went myself and I forgot about it, I mean really, so what, that's how I perceive myself right now. I'm the one and I've made a lot of mistakes in my past but I can't help it.... For'me with the illness everything seems like a challenge to me, its hard work right now but in terms of that challenge ... (Liam) n describing his life Tim states: Urn, I don't know, things change, I'm like, I'm just becoming an adult and I think change happens all the time, I think its normal, I never really freaked out about the way I was, you know, the way I was thinking and the way I was doing things but, uh, I knew I was Schizophrenia and Work 77 doing something wrong because I was always ending up in hospital and stuff. And now he is more aware of the affect the illness: Yeah but it's the way I feel, I feel like I'm, I feel like I'm selfish which is, that's one thing since I've had this illness, really selfish like, uh, it got to the point where my-mum kicked me out, my mum like kicked me out three or four times at least and then, you know, my dad would kick me out and, urn, and I was just, you know, doing what I thought was fun which was' dosing acid and smoking ... Russ went into some detail on how things were now: I felt that being this illness and going to the teams and I'm in a group home has hindered me going to university to get my degree because otherwise you'd be free, right? Just go to university, register and get the books and things like that but at the group home, you know, the team, if you take time off classes and go to the team and, you know, it's not having to, I guess "your medication goes, you know, it affects your relationship with other people and things. I feel it does but I think as long as you're open about it and explain to other people that you're friendly with Schizophrenia and Work 78 them, open and friendly, I think everybody can adjust. (Russ) Sonny had been delusional and taking a lot of street drugs in the past. He believes he is now changing for the better, stating that the two issues are no longer problems for him. What's Important Now Independence /Appearing Normal To appear normal, that is to be seen as performing age appropriate activities and the desire to meet societal standards of inclusion, was important to all. of the men. They also valued a level of age appropriate independence, but only one of them felt a degree of this at present. They, acknowledged the importance of work to accomplish these values, but none of them felt they could act on this desire in a traditionally.productive manner. Seth who lives in own apartment' with a roommate already has a fairly independent situation, and acknowledges that: I have a roof over my head and food in my stomach and •all the amenities at home and my own room. Where Bob doesn't barge into the room and I don't barge into his room and I can be in there for two or three hours, four hours, and he'll leave me alone and that's good. For Liam work would come before independence: Schizophrenia and Work 79 Uh, the thing is that [in] art you have to tell a story and to tell a story you have to have the background and the experience to tell a story so my emphasis now is getting rehabilitated to, to, urn, job readiness. To be work and get a job and hold a job and be able to stand on "two feet and be independent from my family and so I could look after myself independently. So for me right now I don't ' particularly work that hard to, to improve my art." I, I work towards getting tell stories in art.' But, uh, you see I remember what my minister told me, he said that Gauguin became an artist when he was thirty-five, he was a banker till thirty-five before he decided to become an artist so I have lots of time yet still'." But he added: " Compared to each of my friends, I haven't accomplished • anything of what my friends have accomplished, they're • all working or I guess university and I have to go on welfare so I'm just I'm behind in the social context, that's what I'm worried about... . I used to' do that but, uh, its like a;fact of' life working out I can't keep up with my friends because I'm sick, I, uh, have to come to terms with my illness, I can't, I have to Schizophrenia and Work 80 judge myself by my own standards not by someone else's and I can't help it, I have to like, uh, deal with the hand I was dealt with.'... The most satisfaction I get is just hanging out with the guys and playing hockey .or hockey there in the summer, it makes me feel normal Sonny, Russ, and Tim felt it important to be independent in their living situation before they pursued any vocational activities. For example, Sonny noted that the only thing that had changed for him since his illness was that he was no longer looking for traditional work. And when talking about getting on with his singing career Sonny stated "Yeah, there's some things I do have to do first which will take me a year or two, I want to get settled in my house, get a garden growing." Through establishing this form of independence he appeared to see himself as normal as compared to his contemporaries. Russ wanted what he felt he should have at this time in his life: I know that I want a house and a car and,.you know, but then I think why do I want a house? I'm only single, you know, if.I get married then we'd get a house and, you know, have a wife and kids. And, you know, after you get married, if you're not, what do Schizophrenia and Work 81 you want a big house for, you know, just be satisfied then. At least you feel as though you have accomplishment. You've got a house and you've got a car and you've got a job and I think about that, you know... But at present Russ has to put his dreams aside for he is only able to be part of the world around him and society in a more subtle way: You know, if I'm stressed or anything else, I take time off and go to Steveston and look at the scenery and relieve depression. And people can help me, people talking kind of helps me, you know, people talking, having a good time,'having a good time with their life, it just helps me, going to Steveston,-hearing all that chatter, it helps me.... Yeah, yeah, I mean I'm kind of turn up like that, you know, I walk awhile and go this and that way, I guess you've got to try to get integrated into society. As for Tim "... I wanted to move out before summer but its not going to happen right?" He feels he needs to have a job to be able to live independently and that that won't happen this summer because of his reservations around not appearing normal: Schizophrenia and Work 82 I feel like if I was to get a job or something I might be the one that. I'd be like looked upon as odd maybe, its the way I am though so, yeah, I guess I feel a little bi [sic] or if I was to describe myself I would be, I'd have to think about it" I guess. . . . The social part like getting, acting normal with my fellow co-workers and stuff, I don't feel like I can socialize normally or like I don't want to be weirdo.... Well people, maybe not consciously but maybe unconsciously judging and they judge you without knowing it and they see-your actions and that's part of who you are is your actions right ... (Tim) Money It's a commonly held belief that one of the key motivators for work is financial reward. This belief is born out to some extent by the men, though how much money it would take to motivate them to go and get a job and take the risk of over-stressing themselves and possibly becoming ill again is unclear. For even though most of the men wished they had more money, they felt that they had pretty much all they needed to live on. They had stereos> CDs tapes, food, and a place to live, a little discretionary money and access to transportation. They also noted that Schizophrenia and Work 83 they were better off than some healthy people who worked full time were. All the men were on social assistance (Disability II) so all had a steady' income. The amount that each received varied with Tim, Seth and Liam receiving their full check of $720.00 dollars a month and Sonny and Russ receiving an $80.00 a month comfort allowance as, they were living boarding homes. Tim and Liam lived at home and it was unclear as to how much they paid in rent, if anything, and Seth shared a subsidized apartment with a roommate. Seth expressed his satisfaction with his current standard of living: I get a certain amount of money from social services and I'm making ends meet, do I want more in life? Or what more do I want in life and what have I got here and I see we've got two VCR's and two stereos and a TV and a microwave and a computer and a freezer and many people who are struggling to work haven't got what we've got now. And we've got a room with a view and the park. So it's, it makes me wonder is there a purpose in going out and working to get money, what for, to go on vacation maybe? That would be the only thing I could think of. Schizophrenia and Work 84 Later in the interview he thought of some other way money was limiting him, but seemed to have a ready solution for that:' I don't have the money to play golf, I don't have any equipment, I should go to go swimming more often because I enjoy the swimming when I had the day program so, you know, not just sitting in the Jacuzzi being like a bump on the log, actually with the swimming, to do things, to do physical things, that's the next step for me is to get involved with some physical sports, maybe have a soccer tournament, maybe I can talk Bob into getting some people together for a soccer tournament or for a track meet or something. Others felt less .successful financially. Liam stated that: ... with the money I got I bought anything I wanted at the store, anything I wanted that I could buy with my money. I bought monetary things that' I wanted, I bought myself a•surround sound stereo system, I bought myself a VCR to watch movies like 'the whole entertainment system but uh, but so I like did that, it sort of, it made me happy for a while but it didn't make me happy for long, I didn't get that much satisfaction the theater system but I value my health the most ... Schizophrenia and Work 85 And - even in the future: ...I don't expect to have a, to have a degree in working a professional job and working nine to five making a lot of money because my illness affects my, uh, work and my lifestyle that I don't expect to make a lot of money at work but just odd things... For Tim "I guess the best thing is that the government gives me money, I don't have to work for it so it's free, free food and'stu-ff like that." Though he did complain: I don't know how, living on.the money that I get and I'm trying an apartment or something, you know, I can't stand that, that's dumb, that's like going and going,•all I need is a place with a fireplace or something. There's no place like that because they're so expensive so I'm thinking I have to get a job so that's why. You can't afford to and I don't want to live in East Van. I don't want to live down in Skid Row which I already did, did before and I just want to get away from the whole place like I don't' even go down town mostly because I just don't like the environment. A steady income gave both Seth and Sonny.a sense of security. For example Seth notes: Schizophrenia and Work 86 Having my bills paid, I've got food in the house and the rent paid, that's basic" And Sonny concurred: Urn, my disability actually. I just got it. I've sort been lying about the exact (amount I have) until I start making money playing music but financially security is generally handled.... I was just sort of getting eighty dollars a month but nothing else ... [it's] better than having nothing (laughter) that's about all I can say. Russ comment on finances came when he was asked about going to work. He responded: [w]ell only in so far as I need an income in the future because my parents won't live long, I suppose to get inheritances (laughter) but like the thing is like if I live in a group home then it's [the $80.00 a month] fine, you know. I can come here [UBC] and people coming to UBC but it's not enough... Then like I guess it would be enough for awhile I suppose, it would be enough because I help in the group home... He explained his beliefs about money: That's another thing about what my Imam said, the best cure for all sickness is to, you know, like forget your heart's desires (laughter) and not have any Schizophrenia and Work 87 (laughter), but my desires have been in the past to earn more money. But my Imam said, you know, if you're religious and if you're, God will give you. Just be content and satisfied with what you have, you know, be thankful and he'll give you more, you know, or, you know, like, uh, he'll just give you enough for you to live by, you know, like he says like people who are not religious they complain that they don't have enough money and, you know, things like that, but it's like a quarter a day is enough for you, your portion, your limit, you' know, your portion. All.of them felt having more money would be beneficial, but it wasn't a necessity, nor was it a current motivator towards action. It is important to note that because these men received financial support they were able to stay off the streets and be as involved in the world as they were. If they did not receive government funds their families would have had to care for them and only one man's family was in -a financial situation to do so. Seth and his roommate have no other potential income sources. Without having the basic needs of adequate housing and food met these men could not hope to act on a higher level need, such as the need to be productive. Schizophrenia and Work 88 Self expression Some of the men talked of self-expression and how it related to a sense of being.well. Self-expression was obtained through music for Sonny, writings and conversation for Seth, and going out and meeting people for Russ. Liam talked of his art: I'm getting better with my mental well being, I'm starting to feel better but before, before I paint pictures, it's a tormented picture, it's very dark and you can feel, you can see my torment and stuff right on the paper but, uh, the psychosis episode in the painting is, uh, its more, more peaceful and more, relaxed about it rather than tormented, it's more, more well put together, Tim doesn't go out much and said "Like I said before, I don't socialize that much so I don't get to express it that much, at least, you know, I just, I don't, get to express myself that much." Keeping Healthy What became clear was that these men's concern over their health, more specifically not having a relapse of their illness, was the primary motivating force in how they ordered and perceived their lives. Their mental health was Schizophrenia and Work 89 not viewed .as something in isolation of.the rest of their lives When Sonny was asked whether he saw a difference -; between what you do to be healthy and things you do to not be sick he replied: • No, not at all, they are totally different and not really the same ... and all three of them are completely inter linked, when you work on one, the other two benefit, the mind, body, soul.... I do yoga and, meditation (for my soul and mind). To not become ill he was "taking medications and talking with a psychiatrist/ to your SAW worker". The others-concurred that not having an acute episode of schizophrenia seemed related to taking medication, but also believed it was.important to take care of their physical, mental and, in most cases, spiritual selves in •order to have the personal resources to deal with the illness. Well, you know, seeing to your health, your, education, your spiritual welfare, to cleanliness of domesticity which is part of .health I suppose,- be responsible', . feeling you're responsible' to your own spiritual responsibilities.... So like that's why I'm trying to eat,- like trying to build up my strength, you know, Schizophrenia and Work 90 physically, mentally, spiritually like reading books and things, you know, my focus is on. books mentally, physically I'm drinking water and eating food. And I .suppose that's what I've started to do with my life, eat fresh fruit, I like plums, pears, apples, oranges, grapefruits, and I mean, yeah, get a fruit salad, have those nectarines, you know, pears, grapes, you know, lots of fruit, you know, just habits of it. (Russ) Russ went on to say: So I, you- know, you can think about these things, you know train your mind to think about them so like might be beneficial. You know, like you know, it relieves • the pressure and it helps you, you know - because' when I was on the bus I thought about my exercise, and I' did this and I did that and drank my milk and, you know, so forth, and so on. And it helped me get through the bus ride, you know. Because otherwise if I didn't do my exercise I don't think, I don't really think about it, you know, and just that thinking about exercising and I like, that kind of gives you strength. Liam is a very physically active young man: I value my health the most.... I'm in physically good shape, I used to jog, work out actually a lot, so it Schizophrenia and Work 91 was good for me. I'm.physically in good health and mind and body is, heart, mind, body so its all inter connected. If you're healthy physically, you'll be more healthy mentally and emotionally and spiritually. So that was the, that was the, I worked hard to keep myself healthy physically and I watch my diet,, get regular sleep and I drink herbal medicines and I watch I don't stress myself out too much. I make sure that I take good care of myself. I live a balanced life style but I don't stay out late, I don't drink, I live a balanced as far as I'm concerned. In Tim's case his health depended more on his current environment and mental state. "I was thinking I don't do . drugs anymore, that's a good thing, I feel about myself and I've achieved that and achieved getting away from a bad place mentally and a bad place physically." Seth is more specific as to how his behavior and his mental health are related: • . But I do manage to keep myself busy and occupied so I .don't end up in the hospital.' I don't want to be hospitalized again - take my medication, I don't worry • about politics, I don't worry about religion, I don't drink, I don't take drugs,'smoke four cigarettes a day, that's my down fall. Schizophrenia and Work 92 From this chapter it is evident that having had the illness of Schizophrenia had changed the way the men viewed themselves, their futures, and what was important to them. They all felt that their ability to perform traditionally productive activities had diminished, that they had somehow changed as people - some for the better, some for the worse - and that the most important thing in their lives now was their mental health. The following chapter will describe the things the men did during their days to stay healthy and well. The focus is how they spent their time, which consisted of activities that would help them to maintain their mental health. All the men felt they needed to be occupied and that they did perform activities that were productive in the fact that they were accomplishing something. Moving from place to place and being around people in 'normal' settings was also seen as important. Taking each day at a time they kept themselves'well. Schizophrenia and Work 93 Chapter Four: LIFE NOW: "The thing I want most is to not be mentally ill" The following chapter provides an insight into how the men lived their lives and why they chose to do the things that they did. The underlying motivation expressed was that of not wanting to become ill again. They feared that if they went too far beyond what they were currently doing they would become sick and that all that they had accomplished in being well would be lost. By focusing on the present, staying occupied and somehow out in the world they managed to feel part of society. By doing a number of short activities and moving from place to place they coped with the stress of attempting to participate in the world. Any new activity seemed to be initiated by someone they trusted, and this happened only rarely. What follows is a description of what these men did during the day and their • explanation of why they did the things they did. Day to Day Most of the men focused on the present. Seth believed that he should "take it for a day to day, that's the best way to do it, just stay today, [not to] start.on a week to week because that would be too much." For Russ it was "not even that (laughter) [but rather] a minute by minute, a second at a time (laughter)", and most of the time Tim Schizophrenia and Work 94 preferred not to think of the future or make plans. Liam's "advice to people with mental illness is.just be happy, to watch comedy or read comic books and improve your emotional health and enjoy your life here one day at a time". Focusing on the present meant staying well for these men. The problem for them was deciding'what to do or not to do. All realized that they where isolating themselves, and though somewhat appealing, would not help them stay well. Got To Get Out: "it's an awful long day...." All expressed concern about isolating themselves even though .they knew they should go out. Being alone was associated by themselves and others as being part of the illness. The difficulty for the men was how to go out into, the world without exacerbating their symptoms or feeling too self-conscious. Russ stated he needed to get out of his home to keep his mind away from thoughts he associates with his illness, to do something with his time - to occupy himself, to gain new experiences - and because he finds staying in one place too long unbearable. He goes to: Surrey or whatever it's called and then I'll have milk or something, go for a walk. You see it's a long ride by sky train, you know, you could spend a day, you know, its tough, you know, I don't always feel okay in Schizophrenia and Work 95 my mind and, urn, I go anyway. Sometimes it's better; sometimes it's worse. Just go, it's usually to kill time, you know, spend time, you know. Sometimes .think, you know, you know, it's just something to do, you know, plus like I suppose like I'm thinking that experiences are good because like my, my Imam said that, you know, my knowledge increases and intelligence is a natural gift which increases with knowledge and experience.... And it's experience, you know, you get to thinking maybe tie one thing together with another or think about, things or remembers things, you know.... But it's journeying right to life and places and things. Where to spend your time from getting depressed or, you know, sitting at home and.... Yeah, you know, you know,' if you sit at home, if I sit at home then I just go out of my mind, you know, go crazy, can't sit still, you know. He went on to say "'s an awful long day, just what my situation is anyway." Seth recognizes that if he spends too much time alone his symptoms will get worse and that getting out and taking a bus will help. Unlike Russ he has a roommate he can Schizophrenia and Work 96 interact with and that encourages him to participate in activities. Lately I haven't been spending much time with other people, I've been closing myself in, I'm in my room, I don't like listening to the radio because I'm afraid it might start giving me messages and if I start, if I start on that and then I'd be hospitalized when that happens. So I don't listen to the radio, I don't even want to listen to the television, but as for the church, I'm going to get involved to a certain extent even with Bob's church"because to a certain extent I will get involved in that.... I know that I'm closing myself and it's not healthy. So I go out for walks ... I don't feel as such that they (his thoughts) stop me. They hinder me at times, they put a definite hold on me, some aspects of what I want to do. When I want to go out and do things, I feel like I have a free choice to do things, yes or no, but I can't do them. I don't want to stand at the window and imagine the world outside and how it is. I can actually go outside and do it, so that, that choice. And yet if I go into the writings too deeply and things, and then I do my readings and I say these writers are so good, you • know, when I do get in the reading too deeply and then Schizophrenia and Work 97 I've got to go out and take a bus ride, take in a track and field meet. For instance, my housemate is into track and field, a lot of it.... Tim stated his mother wanted him to get out of the house. more, but it was a challenge for him: Urn, going out for walks, ... Urn, I don't know, urn, before I had the illness I was • fine and now after "it, I feel totally different. So when I interact [with] everyday, its new and its, um, its complicated . so its like different, right, it stress, stresses me out a bit, that's why. Even .though it is a big challenge he persists in trying to go out every day. Liam also claimed that he has a strong urge to "veg" at home, but notes that by going out to his Scout meeting he knows is doing something positive for his mental health, so it is important for him not to stay at home. And Sonny goes out everyday to visit friends, play music at the beach, or skateboard. . • Structure and Being Occupied: "I feel if I'm not occupied sometimes it's very bad for me..." Just as in the case of getting out, being occupied or having some form of structure to daily life appeared to be important. Schizophrenia and Work 98 You know, I think structure is very important for everybody, you know, because everybody has got to be structured, people who work not very much structure, you know, they brought their papers and what are they going to do and I said well they've got their schedules, their rosters, you know, to do this or whatever and you've got ,to go shopping and do cleaning, you know, your responsibilities right.... Your responsibilities are your structure, a part of your structure, you know, basically when you go to your bed, you brush your teeth and then you go in the house and you cook. (Russ) Seth describes how he approaches his days: I don't think there's much work involved, uh, structuring my day from morning, from about nine o'clock to five o'clock structuring the day. Since I've had my heart attack I was told I can't, I can't work even for four hours. I wouldn't be able to do or to do volunteer work so that's stopped me from enjoying myself to go out. And, it doesn't stop me from going out to do things but it's stopped me from realizing all the college I've had and all the high school I've had and the training I've had in Europe when I was there. How that's limited me now that I Schizophrenia and Work 99 can't utilize that to the best that I manage now. So I have to structure my time in other ways and that's what I'm dealing with now - is how to structure that time properly without sitting in front of the television or the radio ... I've structured my time to go to the Coast Foundation and to stay at home and work on my computer and take care of the cat, do the house work, go shopping, do whatever and clean up everyday. Russ believes that lack of occupation would be detrimental to his health: I feel if I'm'not occupied sometimes its very bad for me because he said, you know, each one of your moments, use it for your salvation, you know, so like •uh, I'm not struggling anymore, you know, I'm not learning things like university was because you were copying down things, learning them, but I'm not doing that anymore, maybe I'm happier because of that, I stay I.think that winter is coming and its pretty bad if I don't get a job or anything like that, walking around Steveston. Tim doesn't have much of a routine, but he still finds he needs to do something. "That's, I mean, urn, I don't know, I Schizophrenia and Work 100 guess I just sort of occupy my time and maybe do a chore or two." Time (Go): The Need to Move From Place to Place Few external time demands were placed on, but their need to be occupied and to get out seemed to influence how they viewed the passage of the day. They measured their day by activity or place and not hours. By this I mean that the word "go" and the concept of doing became the prevalent markers of their time. And it is also apparent in their comments on their days that they interact on a usually passive basis with others in their environment. Sonny noted that on: An'average day, I wake up listening to really loud music right against the machine, (laughing) start my day with a bang, urn, get up and have breakfast and go to the day program on the days that I do, on the days that I don't, I go to MPA, Mental Patient's Association and drink coffee and play pool.... Um, some days, some days I just go there and some days I visit with my sister, some days I go to my friend's house and hang out there and play guitar there and listen to the radio, stuff like that, I read a lot too... I enjoy skate boarding, playing basketball, Schizophrenia and Work 101 hanging out with my friends, going out for coffee, ' playing lots of guitar, practicing my songs, playing video games, cooking, um, all sorts of stuff, going to the beach. Liam prays and: After that I go about the business of my day, I, uh, I do my odd chores in the house and I read, I read about success, how to achieve success and; I, uh, I play a lot of basketball with my cousin to gain a, my physical strength back... When asked about his day Seth states: Well I wake up at six o'clock in the morning to feed the cat and then I take a walk for a mile, just force myself to go out and grab a little extra distance and then go home and have coffee and toast and maybe eggs or something and then the day starts for me and that's a critical time where I usually go back to bed. Like I have another nap until Bob wakes up, he wakes up at ten thirty to eleven and then I usually go out to Coast Foundation at eleven, Bob is at home by himself, he can handle it pretty well. And then after I have supper at Coast I come back and then there are times we watch the news but I don't, I don't like watching the news too much, it gets too political or with their Schizophrenia and Work 102 religious and many things, I understand why it is like that.... Uh, I like playing chess. Did I tell you I'm getting into some hobbies? I have, which is writing or 'chess - or I need to do some physical activity which is what I'm looking into now, to go shoot pool or to go bowling and once a week to handle that.... I want to get people together from the Coast Foundation, get a bowling team. Tim had a hard time identifying what he did with his time, he seemed the least active and the most unsatisfied: I'm not really, urn, I get bored and stuff so I, uh, I'm not really sure if I really enjoy anything that much, I like to, I do love to listen to music, I have a lot of CD's -and they're all really good groups so there's a big array of listening and enjoying.... I don't have a bike, I figure, I figure it would be boring, it would be a lot of money spent and then it would be boring I thought. I'm kind of walking, this week, this week I was walking a lot,"I was walking to like Granville Island and stuff, eating lunch there and stuff if it's a nice, a nice' day. . In the few months between interviews Russ's daily activities changed, though the essence of his routine did not. On the first interview Russ stated: Schizophrenia and Work 103 I just come to UBC and have lunch, you know, go to Regent sometimes and have a hot chocolate, talk to people at Regent, well today I talked with some people ... and No, yeah, well, I come to UBC, I have lunch and then head off home and I have dinner,there and then come back in the evening. Yeah, and then sometimes I go to the Community Center on weekends, you know. During the weekdays, you see, I spend the weekend and also sometimes on Sunday I go to Surrey Central Mall, Surrey Mall. You see it's a long ride by sky train, you know, you could spend a day, you know, it's tough, you know, I don't always feel okay in my mind and, um, I go anyway. Sometimes it's better; sometimes it's worse. Just go, its usually to kill time, you know, spend time, you know, sometimes think, you know, you know, it's just something to do you know. Plus like I suppose like I'm thinking that experiences are good because like my, my Imam said that, you know, my knowledge increases and intelligence is a natural gift . which increases with knowledge and experience. And it's experience, you know, you.get to thinking maybe tie one thing together with another or think about things or remembers things, you know." Schizophrenia and Work 104 In the second interview Russ noted that: I started going to Richmond, to Steveston in the morning before I go to Pathways [mental health clubhouse] because at Pathways you just sit and do nothing, right. So.I take a ride to Steveston and I have a cup of tea or a cup of coffee and come back and then I go to the Pathways club after'and then usually what I do is I go back to Steveston and then come back to the group home or something like that, you know. And even at the group home there's nothing to do all these hours, right, so I try and stay out as much as I can until the times comes, you know I come home for dinner and stuff and then I go off again to Steveston by bus ... or sometimes I just go once. Well I go in the morning and I have a coffee, if I go in the' afternoon again I just come back on the bus, its just a way to kill time, I don't spend any time there. In the evening I go outside and I go for a walk and things like that. Russ describes what he does while in Steveston: sometimes I go to this ice cream shop but mostly over, sometimes I go to the ice cream, mostly I go to the ice cream shop and have a coffee or a water but other times I go to this restaurant where I have tea, I'll Schizophrenia and Work 105 have coffee or something like that and I go to this other place too, Akbar's Deli and I have tea or coffee, sometimes I go into Mimi's restaurant and have a glass of water. As before he seems to be traveling and going places to take up time and to be around people. For the most part the men seemed to be acting.on their own choices of activity and to be satisfied with what they where doing. Though like most of us there were things they didn't enjoy. Sonny didn't like the group home chores Um, well at the group home I have chores I have to do so I don't, it's not that I hate them, it's just that I dislike them like there's not too much in my life right now that, I really dislike. Tim and Liam would like to be off their medications, but-all the other activities that they did they chose to do.. This was a problem for Tim, as he had difficulty identifying many things he enjoyed doing, but: Yeah, because, um, like I said, you know, it's kind of, kind of, you know, it doesn't get much better than what I'm doing so except; you know, I'm not, I don't know how I'm going to word this, there's some things that I look, I can look forward to having but I feel like I'm satisfied Schizophrenia and Work 106 right now, I don't feel bad about myself with being the way I am right now. The men did not seem to go out and seek activities that they felt would be productive, nor leisure for that matter. Activity choice seemed based on low stress inducement perceived success at performing it and availability. This begged the question of whether they did anything that they would identify as productive. What follows are some of the answers given when asked directly about productivity. ' Productivity Productivity,, purpose and accomplishment were all seen as interchangeable though when speaking of activities within this domain, the term accomplishment was used most often. Participating in an enjoyable activity or doing, things they needed to do seemed to facilitate a sense of accomplishment. A sense of being productive was thus dependent on completing a task, often one that was not easy for the men or doing something that had value to the person. The successful accomplishment of said task, appeared to demonstrate an ability to act on the world without the illness interfering or in spite of the illness. Therefore Schizophrenia and Work 107 the sense of being productive was contextually defined within the person's value system. Liam obtained a sense of accomplishment by "it's playing basketball or hockey that I can still beat my friends at it, play against my friends and that gives me, it's a challenge and a sense of accomplishment that I come out with." He went on to say "if that [working] doesn't happen then I'll spend my time perhaps training for a marathon, then I'll try to win some, uh, some medal, running medal that will help build my self esteem and self worth by accomplishing that." Feeling good about what you did was also important in Sonny's definition: I like doing things that make me, happy and that make me feel fulfilled and things that I do include a lot of sports. I also work out and do yoga, sometimes in the morning and sometimes at night. Yeah and the music, the music especially ... Urn, actually all the time for the past five, six months because I've been writing songs like more than two, three times a week so that's when I feel most productive. When asked to elaborate on what he does that is purposeful, Russ responded: Schizophrenia and Work 108 Everything, except when I don't, I can't think of anything to do. The time is driving me crazy. You know, I have no friends to talk to, talking to friends is purposeful. Doing my chores I think it's purposeful,., but I don't get a sense of purpose from it, but it is purposeful,•right? Talking about showers, cooking, cleaning, you know, dealing with your own special responsibilities ... Uh I think its purposeful but I don't get the sense of purpose. I'm so fascinated by it that I'm totally immersed in it, you know. Oh I'm not totally, immersed in it. That doesn't mean I could, but when I'm totally immersed in something, totally fascinated and enthralled by it. The first satisfactory for my mind, it enriches my mind, you know. And you sing your song and hearing all the words clearly and enjoying the music and uplifting, you know, its like very, I'm sure I don't' [know] how to describe (laughs). Liam stated: Well I have a sense of accomplishment and just little things that make me happy, because even I do something that I don't want to do. It's like when I go to, to the, uh, go to the welfare office to cash my support, my welfare cheque. Because I'm afraid of the place Schizophrenia and Work 109 but, uh, the thing is that if I procrastinate and don't to do something I don't want to do is when I finally find that courage and strength to get, get it over with, I feel productive with. It's a sense of accomplishment for me...-, vl procrastinate about if I, if I, uh, don't want to do something and I get the job done, then I, um, I find a sense of accomplishment that I had the strength and wisdom, the guidance to accomplish something I don't want to do.. Another example he gave of doing something, successfully to completion was when "I finish a scout meeting, I feel that I have a sense of accomplishment." For Seth "[a] sense of achievement, um, being able -to be , creative, to do something that hasn't been- done before." When asked for an example he stated: ....'"just like my writings here is one aspect of it and to, to help others as we hear, I'd like to help others to progress.... I do that now with Bob. He's helping-young people get involved with track and field and there's, he has books of it. So I go with him and we talk to some youngsters and maybe the parents and then we show the books and we show the aspects of whose running or high jump or whatever, and the records. Schizophrenia and Work 110 Tim defined productive as a sense of accomplishment and when asked stated "Urn, I can't think of any time I feel productive." He later went on to say: Urn, a sense of achievement, urn, its confusing, I'm glad that I don't live on skid row anymore and have achieved a normal place to live with help from my family there but otherwise I'm confused, I've achieved a lot of things in my life but I was just thinking that I achieved, um, that's about it. I was thinking I don't do drugs anymore, that's a good thing, I feel about myself and I've achieved that and achieved getting away from a bad place mentally and a bad place physically, and I'm friends with my family again and that's about it, I achieved that. Having a sense of being productive thus appears to be associated with accomplishing a task, achieving some end or doing things that make you happy. When discussing what the men did and why, it became evident that the involvement of others in their lives played a role in activity choice. Not only who decided to spend time with, but who they take advice from in order to try something new. Schizophrenia and Work 111 Social Support Networks: "How you get along with the other person, it also depends on the quality of the other person..." When looking at what the men did, it became evident that they do little proactive planning of the activities they participate in; they appeared to follow a loosely consistent daily routine. Often.if an unusual or novel event did occur, someone else had initiated it. Tim noted that' his mother was trying to encourage him to do more outside the home and participate in family activities. His routine during the past week had changed slightly because he had to go to the dentist for some dental work over a period of a few days, which he described as "quite hectic." Russ mentioned a worker at the team encouraging him to take a life-skills course. He knew of other people who had taken it, but hadn't seriously considered doing it himself. The worker had given him specific information on how to pursue initiating the activity and that was what he was following up on. He said: Yeah because Rose, well, she told me to take the course at VCC, I gave them a phone call and they called me back again and I returned their call and so they told me, see you on the 2 8th. Schizophrenia and Work 112 Seth's usual routine consists of regular contact with others, who help him to get going in. the morning and discuss his concerns. New activities are initiated usually by his roommate who plans the activity,and takes the lead role in' it: I'd like to organize, be an organizer for a social club, which will happen. It's a group with the church,-between twenty-five and fifty years old where they're doing some videos at night. And we want to do outings and we want to get people involved and their families involved in the community of Marpole and maybe expand ' to that area. My housemate is doing some of the work in this matter now. And he's got cards made up, business cards and he's got other little things. So it's quite helpful to know he's getting quite involved in it and I'm on the fringes of it and we want to make a society out of it. Liam values the input of a•long time family friend: For me I go to Scouts, Dr. No, .... he's my role model like, and he first introduced me to scouts. We go back a long [way] because my neighbors where you live in the same area, Sunset and, uh, he, he's Christian and he helped me a lot. And actually in fact he, uh, he sort of like saved my life when I was going through a Schizophrenia and Work 113 difficult period in time with my family. He was a source of stability and cleared my thinking for me to, uh, to talk some sense into me and calm me down. So I guess he helped save my life and I thank everybody including the doctors and counselors who helped saved my life. That, uh, I owe it to him that I help in the Scouts so I've been working for him for seven or eight years now in Scouts. Having someone they could trust who could direct their, efforts also seemed to keep the men involved in some form of new activity. It appeared that they benefited from someone making a concrete action plan, and that this person had to be trusted or seen to understand and have their best will at heart. All of the participants had the clinical symptom of. paranoia in their histories, which may explain why these "helpers" were few and far between. The.nature of their illness may have made it difficult to accept the benevolence of others. This could be explained as sign of the negative symptoms of schizophrenia or be related to the fact that all of the men had a history of the clinically identified symptom of paranoia. Russ stated: How you get along with the other person, it also depends on the quality of the other person that you're Schizophrenia and Work 114 interacting with, how knowledgeable they are to themselves, to you, I guess the most important would be sensitive to themselves. And Tim said "well do you ever, uh do you ever take a look at a person and think maybe wow, I'm scared of that guy, you know, he must be like a bad guy and stuff..." An example of this is evident in their social lives. Two of the men had maintained contact with people they had known before their illness. The other three still interacted with family members, but had had to make new. friends since the time of their illness. The men's social networks consisted of family members, housemates, and acquaintances at mental health organizations and strangers. Many had friends, but they were often people they had met before they were ill or. involved in the mental health care system. Liam considered his friends to be those people who stuck by him when he was ill and the professionals who helped him: The relationships with my friends and my family and my doctor and the counselors that have helped me, you know, its brought me so far ... everybody's help, that's the people who stuck, my friends who stuck by me, when I was in the hospital. They stuck through all of my tough times, the purpose that, that people care v Schizophrenia and Work 115 for me and they'll look after me that have been there for me. People who have been there for me, give me, gave me a purpose for, that I realized that the world isn't so dark, it isn't so black, people still care for me, that gave me a sense of purpose. For Sonny: Some days, some days I just go there [the Mental Patients' Association - association run by person's with mental illnesses, providing activities advocacy, and housing] and some days I visit with my sister, some days I go to my friend's house and hang out there and play guitar there and listen to the radio... Seth has both constant contact with friends like his roommate, a women who shares his beliefs and•"... I still keep in contact with Cindy and Rose who I knew before so we've, they've been sending me wake up calls in the morning." He also wants to meet new people: ... and I'd like to meet more people and converse with • them and get to know them, but I find it difficult at times. At times I think I might need the day program again but I know, that that's out of the question, I have a feeling that another year in the day program would not do me any good. Schizophrenia and Work 116 He and his roommate hang out at athletic parks and talk to the kids, parents, and security guards and are also thinking of starting a social club. Russ didn't feel he had any friends so tried to express positive social energy in another way: Sometimes a week will go [by] because I cry because, you know, because I don't have them [friends] anymore, they were really dear to me and, you know, they were.... And you don't really, I didn't realize that they were a real strength to me, a real protection and help and things like that. And, urn, I broke off with all of that, you know, and it's broken off, you know, because of the illness or whatever. I didn't go back to school and, you know, that was the toughest part of it, you know, yeah. So what like I mean, I think of other people on the buses now and I've been with them and think of them, you know. Because this has only been these ones who may move from there to there or something like that so they're not loving and things like that, lovers and things like that. So you open up the mind and think about that. So, sometimes I sing songs and I sing them towards people, you know, we're going to be together, you and me and things like- that in my heart and things like that. I mean I don't Schizophrenia and Work 117 [tell] them about it, because they're total strangers, but I do have feelings like some love and like just peace and there's so much hate. And then like, for example, I went to the beach yesterday; Crescent Beach and I saw some boys playing. And, you know, I find there's so much harmony and laughter and love and peace and like, you know, good will and like,, you know. All the scariness or complete faith and trust and, you know, like its just like wonderful and, you know, it was like a moving experience. I suppose, I wasn't moved that much but like it can be a moving experience. Russ also talks about meeting strangers in malls or coffee shops: . . . . [I] just sit at a table, I find it difficult to talk to people ... Just to make that break and I don't think it, I just say hello. And sometimes, I met this one person at the bus stop, once he said hello to me. I just meet with people (laughter). True I'm uncomfortable with that, that Asian guy; he was here and there. It was different, you know, apart from the materials of this conversation I find it difficult to talk to people. Schizophrenia and Work 11.8 Tim's social contact is mainly family; "Yeah, and so, I've got my brother there, living there, I'm in contact with my family more, I've been seeing some relatives on my mum's side." When asked about whether he had contact with any friends he replied "Uh, no, I used to have good friends and stuff and all we did was piss around and do some evil things." People he considered friends were from the past, from his drug taking days. Russ lives in a group home and Sonny lives in a boarding home, and neither talked much about socializing with the people who lived in the house. Sonny didn't mention socializing with any of his housemates, but Russ had the following to say about his housemates.: Well- at the group home I do [talk to people] but its not that good. Because sometimes when you talk, they don't want to talk to you and then they talk only. So you don't talk to them. Like there's not, sometimes, like this girl she's so egocentric, you know, she keeps on talking about herself almost all the time and this and that and this and that and I did this and I did that, (laughter) talking like that, you know. And you've got to be fair a little bit, you've got to talk to Janice, you know, and every time I mention something or I'm saying, she says don't talk about, Schizophrenia and Work 119 about a stain on her jacket, she says don't ask me about that. I said I know, its none of your business, well, of course people are going to ask you if you've got a big stain on your jacket like there's something wrong there, you know.. Another problem, another person asked her, she would yell the same thing to him, you know, she told me and she asks us questions all the-time and she said I'm too inquisitive and I ask too many questions (laughs).... Yeah, just living happily together, you know, and you don't have too much power and all that. Sonny met with people at the MPA, Seth at the Coast Foundation, Russ at Pathways and the Day Program and Liam and Tim at the Day Program. Time was spent in doing things-people their age would do that involved being with others, > but not necessarily interacting to any degree with them. The men's social support network was not the only place they got direction or support. All of the men told of how their spiritual beliefs contributed to their view of their situation and the choices they made around the activities they did. There's Something Greater Than Me Another dominant theme that came from speaking to these men was that of the importance of spirituality in Schizophrenia and Work 120 their lives. Tim, Seth and Liam were Christian - Seth .and Liam were Catholic, Russ Islamic, and Sonny Buddhist. Seth also believed in a spiritual police force, and Russ followed a living secular leader called the Imam. Spirituality The belief in some higher force seemed to effect the. men's lives in a number of ways. For these men, spiritual beliefs seemed to allow for the' vagaries of life while protecting their self-esteem. Given that most of them felt, a loss of control of their lives, having some directing force greater than themselves seemed to help them make some sense of the illness. They believed it was not their fault they were ill and by seeing themselves as victims of fate or a divine plan it helped them to depersonalize their past failures or shortcomings. It provided a coping mechanism it that it seemed to ease the pain of not accomplishing what they had wanted to on another level. Spiritual belief added meaning to the things they did and in some cases daily activities had purpose in that they fulfilled a religious requirement. Having a spiritual belief helped the men to cope with every day life and the consequences of their illness. Russ believes: Schizophrenia and Work 121 The situation you're in, you didn't get there immediately, it took a whole lifetime and when you' were born it started, you know, your destiny or something like that.... So that gives me security, praying is security and like knowing that everything you have, had is happening because its God's will, you know. Like sometimes what worries me, what I'm going to do in the future like whatever God intends is the best, supposedly the best is God. So I'll leave it up to him, I'll just pray, saying the lord's prayer, singing the national anthem in my heart.... He'll give you enough, enough in whichever way he can, he'll give you enough to get by in the world in whatever situation you're in. Seth described his life as being influenced by the illuminati and claims "it's,a force, it's a strong force, it's almost taken me over and I have to be a little cautious as to how I handle this force." He seems to cope with this spiritual force by participating in formal Catholic Church activities. He finds the church community "supportive" even though he' recognizes he is seen as different there because "... I don't talk like a usual Catholic". This belief may be a delusion, though others believe in this organization. Schizophrenia and Work 122 Liam s t a t e s : ... when I was a kid I prayed for•things and the thing I want most, is not to be mentally ill. Because I thought in the past that would be the worst thing that could happen to me right. I, urn, its a long story, its the worst thing that could happen to me. But instead I chose to be, I prayed to God, I chose to be six two rather than, rather than to be healthy so I became mentally ill at sixteen. So it was a trade off, God answered my prayers to do that, it's a long story." But he notes: I'm optimistic, uh just because Jesus left me with a lot of talent.... I'm blessed in more ways than one. I can't, ask for more. There's a lot of people worse off than I am. You know, I would like to have my freedom so that I don't have don't have to be tied down by medication every, everyday and that I can go travelling and not worry about my health all the time. But He's like, uh blessed me with many gifts and talents that I can't ask for any more or else God will get angry at me. Liam also devotes much time to God: I'd like to say I do, I practice artwork, I practice drawing but, uh, it's not, my emphasis for me right Schizophrenia and Work 123 now. I find that fellowship with God is more important, I have to. I make peace with God and be a . better.... I pray and hope that it, that these trials that set in front of me has made me a better person... For the most part he believes: Everything has, seemed to have worked out for the, things have worked out for the best. I uh, it's the piece that knows that you, that's taking care of you and God takes care of you. From the way things turned out, my faith is, uh, I know that Jesus is looking after me and watching over me, but it gives me know that God is in control. God is in control and that everything will turn out for the best. •' . The concept of good and evil and doing good, or being a good person was evident. The men felt better about themselves by following their religious beliefs and acting in a way that was deemed 'good' according to their spirituality. Russ who follows a secular version of the Islamic faith which has a living spiritual leader called the Imam says: You've got to give and take, you know. You will strike security and like forgiveness, forgiving other people Schizophrenia and Work 124 any harm or doing good to friends who do bad, evil to you. Return good for evil, and this' is all like it's happening in the future, you'll be rewarded for it, right. You know., like you need to go up, let people hurt you, but that's counted towards your favor, you know, like when you give charity or do any good deed ... But I mean it's like a very good ground is the will of God right, that gives me great security. Tim, who. didn't identify any particular Christian denomination noted that "... the morals and values sort of keep me thinking that I am, I do good on this earth and maybe that bad person over there might be just an idiot, sort of evil thing that's what." Spiritual Beliefs as Directors of Action The men participated in formal activities put on by their spiritual organizations as well as choosing to do things because they would be an expression of their spirituality. Seth, for example, said, "I'd like to organize, be an organizer for a group at church.... And it's every Wednesday night and we have this video after the church meal." Liam notes that "I give the best of my time and efforts to God first so I worship God by reading the bible Schizophrenia and Work 125 when, in my, when I feel the strongest and the best and I feel the most alert." Sonny claims to hold some Buddhist beliefs and sees his spirituality•expressed in what he does: I write all sorts of songs, I write, love songs,- I write songs about fantasy, I write songs about, I like jazz songs, I like Reggie songs, I like songs about freedom. I like poetry, urn; I write songs about, just about every trait that I mentioned earlier, songs about those things. And spirituality, for sure, • definitely, higher consciousness. When asked about how spirituality was expressed in these songs Sonny responded: Urn, that's hard to explain, I do have a song called 'What happens when you die', and it's basically talking about how we have a soul that does not die when our body does. It goes and becomes reincarnated. Well first it goes, joins back with the oneness, the soul of God or the source or the creator, whatever you want to call it, and then comes back in some other incarnation. He went on to say that "my dad's a musician and my mom is into spiritual awareness, it's like the best of both Schizophrenia and Work 126 worlds. You see what I have to do is just put them together in one package." Russ finds spirituality in everyday activity: ... he [the Imam] says each individual responsibility, you know, a sense of direction that can find for yourself throughout your life time such as laundry, do not smoke, you know, take drugs, you know, and help each other out and your brothers and sisters, things like that. As well as directing one to action, Russ also saw spiritual beliefs as directing one away from action: You know, I think obeying God's will gives you security like not, not doing bad things, not doing evil things like sexual bonds, beauty and alcohol and drugs and things like that and cigarettes, things like that, they're not squandering or using or telling lies about somebody.... Sometimes I feel it has done but all the, some of the things I've committed, you know, the alcohol and stuff like that, you know, I think they're, I suppose the theory is that they'll bug you, you know. And I think perhaps they are bugging me, but I'm trying to improve my life and do things. Everyday I think about this, you know, like my Imam says think • about your faith everyday. So my thinking, search, you Schizophrenia and Work 127 know, so I guess the struggle is I cannot feel. I'm like the salmon, you know, the fish going up there. No, and you don't want to take drugs, how drugs and you're taking, well, you know, worrying all the time and just waste away, the brain and my organs. Balancing activity and stress, using the assistance of others and believing that something than themselves was at work in their lives enabled these men to live with. • their illness and participate in their world. Schizophrenia and Work 128 Chapter Five: DISCUSSION This study set out to explore how men with a diagnosis of schizophrenia, who are not currently participating in traditionally productive activities - such as employment, education or volunteer work - experience activities that they believe constitute productive endeavors. The focus of the research was based on four guiding questions. Firstly, what activities did the person with schizophrenia conceptualize as productive? Secondly, what did he do that was productive or non-productive, as judged by him? Thirdly, what were the influences, general life experiences and related feelings and thoughts that had impacted on;the person with schizophrenia's behavior around activities personally described as productive? The fourth question asked to what extent the person believed having the illness of schizophrenia had impacted on the previous areas of inquiry. Has having schizophrenia affected how one views productivity, how productive one is, and if so, how? Thus, how meaning was ascribed. To do this a qualitative research approach was used. The method was successful in that the men provided information not only on what they did, but why they did it and how their environment and experiences impacted on their Schizophrenia.and Work 129 choices. This information directly addressed the questions put forward at the start of the research. A number of themes became evident in reviewing the data obtained from the participants. They spoke of the changes they had experienced within themselves, their interactions with others, their view of work and/or school, what they did and how they coped. The guiding factor for how these men spent their time • seemed to be their mental health. What they chose to do and why they did it was determined by what they each deemed necessary to not become ill again. Much of how they spent their time consisted not so much of planned goal-oriented activities, but of trying to cope with the seemingly endless amounts of time the. illness afforded them: At the same time, this required not doing anything that would be too stressful so precipitating an increase in symptoms or an exacerbation of their illness. The second outstanding finding, was that of how the men occupied themselves during the day by moving from place to place. It seemed that as much of the men's time was spent in going from one activity to another, as was spent in doing the activity once there. It was important to be able to leave or change one's environment when the current environment became too stressful or had served its purpose. Schizophrenia and Work 130 Having the means to go to new places, for example a Bus Pass enabled the men to cover great distances and obtain a wide variety of environments. Those who traveled from place to place'felt more a part of society than those who did not travel as much. Another important component of the occupations in these men's lives was the need to feel as if they were successful. For them this could be demonstrated through the completion of a task, meeting the requirements of specific responsibilities or performing an activity to their own standards. The concept of being productive in the traditional sense was not lost on them, but they had for the most part given up, for the time being, on actually accomplishing this. Most felt it would be too stressful and not worth the attempt. Their mental health was most important. If anew activity was to be attempted it was usually initiated by someone whom they trusted. This makes sense given what was at stake. Who would you entrust you mental health to? Of course the fact that most of these men had some element of paranoia associated with their illness did not make the establishment of trust easy. Aside from people, almost all these men put their trust in a spiritual belief system. This belief system Schizophrenia and Work 131 helped them to maintain a positive sense of self, to guide them towards appropriate activities and to provide them with a framework in which to make sense of what had happened in their lives. Spirituality was at the core of what kept them well. From this study it became evident that a sense of being productive for these men came from successfully attempting something new or creative, doing something they liked, or accomplishing a task. Many of these tasks consisted of instrumental activities of daily living such doing chores, maintaining a healthy routine or following through on a commitment to someone else. Work and school were still held as the ultimate standard of being productive, but as these were deemed unattainable at present, the aforementioned alternative tasks took precedence. This has been borne out in other studies, such as the National Association of Mental Illness (NAMI) study conducted in 1999. This study found that even though "... about 71 percent of those people with serious mental illness who are asked about their future goals identify work..." (NAMI, 1999, p. 3) approximately a quarter of these people were not finding employment, while "[I]nnovative rehabilitation programs, which help people . with the most serious mental illnesses> are.placing more • Schizophrenia and Work 132 than 50 percent of their clients into paid employment." (NAMI, 1999, p3). Thus it appears that the majority of those who are severely mentally ill are not working in a traditional sense.. It is important to understand that in this study each man's work was to stay well and all occupations and activities gained meaning through their perceived ability to enable him to accomplish this. The boundary of what constitutes a balanced life.for them seems to be blurred. The traditional notion of what constitutes work, rest, play and self-care did not apply, nor then did the concept of a balance between them. How the men categorized activities was fluid, depending on the needs it met and the significance of it to them. Accomplishment in any activity was seen as productive and all activities are driven by the fear of becoming ill again. Riding the bus, going for a walk, and making one's bed all were seen as ways to stay well. It was not the balance of time spent on any activity that was seen as important, but its successful completion. To have choices for interacting in the world without becoming ill was a key to their quality of life. Clinical Implications The participants' beliefs about their decreased ability to cope with the demands of attempting new Schizophrenia and Work 133 productive activities and the fear that it may make them ill again is significant. These men had knowledge about their illness and this knowledge seemed to limit their functioning in the area of productivity. Their concerns around their health may be well founded, but given that they desired to participate in work or school, it seems obvious that helping them to explore this area would be, of benefit. Actual hands-on graded activities that did not directly address work or school, but increases.the confidence a client has in his/her own abilities might be of benefit. As the client learned to cope with the stress of increasing demands work/school related activities could be added. What To Do With One's Time Structuring and occupying oneself was no easy task for the men of this study. If clinicians acknowledged the effort people put into trying to stay well and yet be occupied, a more client-centered approach to care could be established. Terminology, such as negative symptoms, might come under closer scrutiny. More empathy and understanding would be placed on what the person is currently doing. Acting on one's environment to stay well, or not become • ill, is occupation for these men, and providing means to Schizophrenia and Work 134 accomplish this occupation is a valid component of occupational therapy. To get out of the house and into the public domain was also very important for the men. Having some place to go that was safe, familiar or normalizing facilitated their ability to participate in the community. Staying home, though alluring, was seen as a major stumbling block to staying well. Being able to participate in a few different activities each day also seemed to facilitate activity involvement. There seemed to be a one to two hour window of participation time, after which the activity became onerous. Programs or schedules that allow for variety are therefore important. And the importance of doing anonymous or parallel activities cannot be underrated. There may be value in helping people to feel part of the world without them having to act directly on it. This would allow them to feel more normal, for as De Bonis, De Boeck, Lida-Pulik, and Feline (1995) found, people with schizophrenia have a view of self that tends to be contrasted with others.more . • than normal; "The schizophrenic self is contrasted with an undifferentiated mass of others, in other words, with the other..." (De Bonis, De Boeck, Lida-Pulik, and Feline, 1995, pp. 364-365). The study participants focused on the Schizophrenia and Work 135 ways they were not normal. Being able to observe or be a non-active part of a normal daily activity gave.these:men a sense of participation or belonging without the added stress they may often feel in social settings. By participating successfully in normal everyday but less threatening environments, persons with schizophrenia, could begin to see themselves as increasingly well. As clinicians we need to be aware of providing or facilitating activities where there are" reasonable' expectations and responsibilities on a continuous basis, not just a monthly follow-up or recommendations for when they leave hospital. There need to be options for engagement in a number of activities and someone to assist in promoting participation in new activities. Providing community services that offer a number of activities, both in and outside of the mental health setting,- and opportunities to interact with others in a variety of ways would assist the men in leaving home, and participating in the outside world. •, Change of Routine .' The findings suggest that novel experiences' were difficult for the men to initiate on their own, for even . though a change in routine was desired, they were unable to formulate and follow through on a plan of action. This is Schizophrenia and Work 136 supported by a single subject study of Lysaker and Bell (1995) who note "[h]e reported that his most disabling and pervasive symptom was persistent inability to pursue any goal in his life" (p. 3 92). Obviously assistance is needed in this area. In a more generously funded health care system therapists could provide one-to-one follow-up, but currently many occupational therapists working in the mental health community have neither the time nor resources for this. Community workers may need to pay more attention to helping their clients set goals and action plans and then problem solving around these plans. Another approach would be to enable the important and trusted people in our clients' lives to provide this assistance, such as a client's family members, friends, or trusted individuals to provide this type of support. As the participants acknowledged, it was often someone close to them that initiated and supported activities. Spirituality Another area that the study can contribute to is that of addressing the dimension of spirituality in client's lives. Clients in this study were not directly asked about their spiritual beliefs, but all brought them up in relation to their illness and what they do with their time. Schizophrenia and Work 137 This has been found by other researchers such as Lingren and Coursey (1995); "[W]hile Sullivan (1993) did not ask clients about their spirituality, about half of the sample volunteered that they used it as a coping mechanism." (p.110) It is significant then that we address the spiritual aspects of our clients' lives. It is also important to note that the men talked of their spirituality in terms of formal religion and how it helped them in their lives. It provided them with a way to make sense of.their situation and cope with it, and with things to do to live a 'good' life. These sub-themes came from the men themselves and speak to the use of spirituality and meaning making in therapy. Clinicians in the past have not addressed spirituality seeing it terms of a set of activities or beliefs a person participates in that express their spiritual orientation,-but that are separate from their daily activities. Spirituality is thus considered to be outside the province of occupational therapy practice. Furthermore, in a survey based on a national sample of American occupational therapists: ...less than 40% of the respondents indicated that they address.clients' spiritual needs was within the scope of their professional practice, and the majority Schizophrenia and Work 138 (82%) reported that their academic training did not prepare them to address the spiritual needs of clients. (Engquist, Short-DeGraff, Gliner, Oltjenbruns, 1997, P.173) However, Christiansen and Baum (1997) see this as a neglect, stating "[b]y failing to acknowledge a spiritual dimension, occupational therapy practitioners lose important opportunities for understanding the full potential of occupation to enhance the health and well-being of clients" (p.171). As well, in psychiatry we have become wary of people's spiritual beliefs. Religiosity is seen to be a warning.sign or symptom of the illness, and of the research on religion and mental illness "[t]he majority of studies have focused on the relationship between psychopathology and religious beliefs and practices" (Lindren & Coursey, 1995, p. 94). Although it is true that religious beliefs can be a warning sign or a symptom of a mental illness, it is important to respect the spiritual beliefs the client holds. For as this study has shown they may have a positive effect on the quality of life of the person. There is a fine line between pathology and normalcy and we should not be so quick to pathologize spirituality. It seemed that none of these men did attend formal religious activities on a regular basis, but their Schizophrenia and Work 139 spiritual beliefs went beyond these activities. For most, their beliefs dictated their actions. One man, for example, told of how all the things he did to maintain his room were, done because taking care of one's surroundings was a way of doing God's will. R. Thibeault (CAOT-Teleconference, December, 1999) has attempted to classify spiritual activities more directly in terms of occupation. Using this system, the man's daily activities could be classified as doing God's will or "... occupation as worship, do all that you do for the glory of God" and "... occupation as stewardship, act of service" (R. Thibeault, CAOT-Teleconf erence, December, 1999). By actively living their lives in accordance to their spiritual beliefs the men were able to maintain a positive sense of themselves and to come to terms with what had happened in their lives. Evidence to support this notion can also be found in current research. For example' Christiansen cites Antonovsky's (1975, 1993) work "research on sense of coherence showed that understanding, managing, and deriving a sense of meaning from one's life are powerful factors in coping with high levels of stress and adversity in life" (p.171), while Lindgren & Coursey (1995) showed "[s]piritual beliefs can ... help people cope with other high-stress life events" (p.94). Further more Schizophrenia and Work 140 Engquist, Short-DeGraff, Gliner, and Oltjenbruns (1997) note: [T]hen the client's spirituality, as a source of inspiration, plays an influential role in directing what purposeful activities are identified as meaningful. A therapist's insight into that which influences a client's values of purpose and meaning may contribute to more effective and lasting occupational therapy outcomes." (p. 174) Thus, clinicians should be aware of the benefits to our clients of spiritual expression and recognize that it may be important for them to take a step back and to re-evaluate . their own views on spirituality. Howard & Howard (1997) state the importance of addressing spirituality in occupational therapy well when they claim, "[I]f occupation is the basis for ultimate meaning, and religion is functionally defined as the filter through which we assign that meaning, spirituality permeates all areas of occupation, making a direct link between occupational therapy and spirituality."" (p. 182) Some concerns within Occupational Science are also addressed through this research, adding to the science's knowledge base with regards to meaning and occupation. Within the Occupational Science literature there are Schizophrenia and Work 141 currently three predominant ways in which occupation and meaning relate: meaning is a constituent of occupations (Clark et al, 1991; Jackson, 1995; Kielhofner, 1985; Yerxa, 1993; Yerxa, 1995), occupations have meaning for the person (Christiansen & Baum, 1991,-Fidler & Fidler, 1983; Jackson, 1991; Kielhofner, 1985; Yerxa, 1993; Yerxa, 1995; Yerxa et al, 1990), and occupations have meaning within a culture or society (Christiansen & Baum, 1991; Clark & Jackson, 1989; Clark et al, 1993; Hasselkus, 1989; Kielhofner, 1985; Kielhofner, 1992; Sharrot, 1983; Yerxa, 1995). The latter two definitions are most evident in this research, with occupation having meaning for the person being the most salient. Though it appears more accurate to state that the . meaning of an activity is fluid and dependent on the •' context of it within a person's life. The participants in the research listed a number of different occupations that held different meanings in different contexts. For example making one's bed was seen as a form of self-care when done as a chore, but was seen as away to express one's spirituality when performed with the idea of doing your best for God. Another time the making of one's bed was viewed as a way to be successful and productive in life since it was an accomplishment. Riding the bus is another example of the fluid nature of.the meaning of an activity Schizophrenia and Work 142 given its context in a person's life. It was at different times seen as a form of transportation, a social activity, a productive activity, and a way of coping with the illness. Thus, activities defined as productive are not easily identified without first exploring their role within the context of a person's life. It is hoped that by providing insight into how people with schizophrenia see themselves as productive, and the events or experiences which contribute to them labeling certain activities as productive, a deeper understanding of occupations is achieved. As well our knowledge of. the relationship.between meaning and occupation is advanced. Limitations of the Study The major limitation of this study was the small number of participants. Originally ten participants were sought, but there was no response from men in the community who had not been to the day program. This may due to the nature of the illness and the wariness of these individuals to trust people, particularly if there is an element of paranoia in their illness. • As noted, the researcher had had previous contact with these men in a therapeutic setting, the Schizophrenia Rehabilitation Day Program. Though not a primary therapist for any of them, this previous knowledge of each other Schizophrenia and Work 143 could have influenced the information received. For example the study participants knew that the researcher was an occupational therapist and may have provided answers with that in mind. The language used by the men may also have been .influenced by their attendance in the rehabilitation program and if so would have influenced the themes obtained from the interviews, as the themes were chosen based on what the participants said and how they said it. Though the issue of common language would not have affected the content of the stories. Another limitation on the transferability of findings is that all participants were from a major urban center with many resources (such as rehabilitation programs, day houses, housing, malls, and public transportation). These resources would have facilitated the men's movement from one place to another and provided opportunities for them to interact in a normal, but somewhat anonymous manner. Participants in a rural area may use their time much differently, as their mobility and opportunity to interact somewhat anonymously would be limited. As well, all the men had completed a rehabilitation program in which they had learned about their illness and abilities. It is hard to say how this knowledge may have influenced their decisions and actions. For unlike other Schizophrenia and Work 144 studies none of the participants voiced any concerns about not knowing about their illness. In Laliberte-Rudman et. al. (2000) this lack of knowledge was seen as a barrier to functioning. From the results of this study it appears that information on the illness may have played a role in convincing these men that they would be unable to handle the demands of traditionally defined productive activities. All of the participants knew the benefits of medication and activity, but had no confidence in their ability to maintain their health and cope with the stress of a job or school. Knowledge about the negative impact of stress on their illness may have held them back. Again this study only -involved men, so that its applicability to women could be called into question. Men usually have an early onset of the illness and tend to have developed fewer academic or vocational skills as a result. Ethnicity was not directly addressed in the study and appeared to have little bearing on the findings. The only direct evidence observed was that of religious belief. Ethnicity may not have been a large factor since all of the men had lived in Canada for over 16 years and all of their adult life. Schizophrenia and Work 145 Future Research Future research could address the limitations mentioned above, for example interviewing men who had not been through a rehabilitation program, or interviewing women who had either been through the same program or not. As well, research could pursue coping mechanisms for stress or what people learned about their illness and how they view this information. In addition, future research might also explore in more detail specific theme areas such as the process of decision-making for people with schizophrenia with regards to the use of time or belief systems around perceived barriers to work. The methodology of the research could be changed in future as well. Given that people with Schizophrenia find it hard to attempt new things or discuss their lives with people they don't know .a buddy system could be employed during the interview process. A significant person in the participant's life, or a trusted care team worker, could assist in the recruitment of participants and be present during the interviews.. This would provide the participant with a greater sense of security and perhaps allow him or her to speak more freely, thus improving the quality of data obtained. Schizophrenia and Work 146 It is hoped that through the process of this research a greater understanding of the experiences and personal meaning of schizophrenia for men with the illness will be achieved. This knowledge will not only help increase others' comprehension of the lives of these individuals, but also enlighten the profession of Occupational Therapy on the concept of productivity and its relationship to lived experience. Schizophrenia and Work 147 Appendix A: Guiding Questions Initial Interview When you were a child, what did you want to be when you grew up? What did you think you would be doing at this point in your life? Tell me about your life now. What do you enjoy doing? What things do you dislike doing? How do you spend an average day? Why, do you think, you choose to spend your time the way you do? How did you come to be doing what you are now? What were you doing before your illness? What has happened since your illness? Has your -illness affected the things you do in your day? How? What things give you a sense of accomplishment? How have you accomplish the things you wanted to in your life? What has hindered you from accomplishing the things you wanted to? Are you satisfied with your lifestyle?' What gives you satisfaction? Would you recommend your lifestyle to others? Schizophrenia and Work 148 When do you feel productive? When did you feel productive? Second interview Have you thought any more about what we talked about last time? What do others think of how you spend your time now? How do you think the way you spend your time now influences (or effects) your interactions with other people? (Your relationships) What would you rather be doing? What are the best things about how you spend your time now? (The worst things?) What would you rather be doing now? Why aren't you? Do you have a long-range plan? How do you see yourself in the future? What gives you a sense of accomplishment? What gives you a sense of security? What gives you a sense of achievement? What do you do that makes you feel good about your self? How do you describe yourself to others? What things are important to your identity? Would you consider anything you do now work? Schizophrenia and Work 149 Appendix B: Medication Aptropril: Angiotensin converting enzyme inhibitor. Used in congestive heart failure therapy. Possible side effects are renal problems. Aspirin: In this case used for secondary prevention•of myocardial infarction. Side effects include gastrointestinal problems and tinnitus. Benztropine: Antiprakinsonian agent. Used to treat drug induced extrapyramidal reactions (side effect of. antipsychotic medication). Side effects include nervousness, impaired memory, dry mouth, constipation, blurred vision, and weakness. Buspar: Anxiolytic. Used for symptomatic relief of excessive anxiety. Side effects may include dizziness, headache, nervousness, lightheadedness, nausea, excitement, and sweating. These usually go away after a few weeks. Clozapine: Atypical antipsychotic agent. Indicated for both positive and negative symptoms of schizophrenia. There is a risk of agranulycytosis and seizure; therefore it is only given to treatment resistant patients who are nonresponsive to, or intalerant of conventional antipsychotic drugs. Regular blood tests (weekly or biweekly are required). The Schizophrenia and Work 150 most common side effects are drowsiness, hypersalivation, tachychardia, dizziness and constipation. Epival: Anticonvulsant also used to treat mood. Most common side effects are headaches, nausea, somnolence, vomiting and indigestion. Haldol: Antipsychotic. Used in management of manifestations of chronic schizophrenia. Side effects include extrapyramidal symptoms (i.e. tremor, rigidity, hypersalivation) and tardive dyskinesia. Lithium: Antimanic agent. Used to treat bipolar illness. Most frequent side effects are gastrointestinal, fine tremor of hands, fatigue and thirst. Metoprolol: Beta-adrenergic blocking agent. Antihypertensive. Used in cardiac therapy. Nitroglycerin: Antianginal - antihypertensive. Used for acute symptomatic relief of angina pectoris and prophylactic management in situations likely to provoke angina attacks. Most common side effect is headache. Olanzapine: Antipsychotic. Used to treat positive and negative symptoms of schizophrenia. Common side effects include Risperidone: Antipsychtic agent. Improves both positive and negative symptoms of Schizophrenia. 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