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A comparison of consumer-administered and staff-administered client statisfaction surveys in mental health Giffin, Sharon E. 1995

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A C O M P A R I S O N OF C O N S U M E R - A D M I N I S T E R E D A N D S T A F F - A D M I N I S T E R E D C L I E N T S A T I S F A C T I O N S U R V E Y S I N M E N T A L H E A L T H by S H A R O N E. GIFFIN B.S.W.,-The University of Western Ontario, 1994 A THESIS S U B M I T T E D IN P A R T I A L F U L F I L L M E N T OF T H E R E Q U I R E M E N T F O R T H E D E G R E E OF M A S T E R OF S O C I A L W O R K in T H E F A C U L T Y OF G R A D U A T E STUDIES (School of Social Work) We accept this thesis as conforming to the required standard T H E U N I V E R S I T Y OF B R I T I S H C O L U M B I A June 1995 © Sharon E. Giffin, 1995 In presenting this thesis in partial fulfilment 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 The University of British Columbia Vancouver, Canada DE-6 (2/88) A B S T R A C T Consumer participation has become an increasingly important concept within the field,of mental health. A study by Polowczyk et al. (1993) suggests that involving consumers as surveyors in satisfaction studies may help improve research validity by minimizing socially desirable or acquiescent response sets. The purpose of this study was twofold: to determine the effects of consumer participation in the process of administering client satisfaction questionnaires to mental health consumers and to examine the experiences of five mental health consumers who were involved as researchers in the project. The consumer-researchers participated in the development of the survey instrument, the collection and analysis of the data, and the dissemination of the research results. A comparison was made between the results of 25 questionnaires administered by consumer-surveyors and 32 questionnaires administered by staff-surveyors. Fifty-seven adult clients with serious and persistent psychiatric disabilities attending a community mental health team completed the questionnaire. Contrary to the previous study, the results of the consumer-administered and staff-administered surveys did not prove to be significantly different. The findings of the comparative study suggest that consumer participation in the administration of client satisfaction evaluations may not be a key factor in determining the level of client satisfaction. However, the data gathered on the experiences i i of the consumer-researchers suggest several important issues to be addressed during the planning and organizing stages of participatory projects in mental health research. 111 T A B L E O F C O N T E N T S A B S T R A C T i i T A B L E OF C O N T E N T S iv LIST OF T A B L E S v i LIST OF F I G U R E S v i i A C K N O W L E D G E M E N T vi i i I N T R O D U C T I O N 1 C H A P T E R O N E : T H E O R E T I C A L F R A M E W O R K 6 Organization Theory 6 Beyond Organization Theory: Liberal, Structural & Feminist Paradigms 15 Perspectives on Power 20 Summary 29 C H A P T E R T W O : L I T E R A T U R E R E V I E W 31 Consumer Satisfaction Studies in Mental Health Research 31 Consumer Participation in the Evaluation of Mental Health Services 37 Experiences of Mental Health Consumers as Researchers 40 A Comparison of Consumer & Staff Surveys of Consumer Satisfaction 43 C H A P T E R T H R E E : M E T H O D O L O G Y 48 Participants 48 Measure 49 Procedures 52 Data Analysis 54 i v C H A P T E R F O U R : R E S U L T S 56 Comparison of Consumer-Surveyed & Staff-Surveyed Groups 56 Experiences of Consumer Researchers 67 C H A P T E R F I V E : C O N C L U S I O N S & I M P L I C A T I O N S 73 Comparison of Consumer and Staff-Surveyed Groups 73 The Experiences of Consumers as Researchers 76 Overall Levels of Satisfaction 79 Summary 81 Bibliography 82 Appendix A : Description of Consumer-Researcher Position 86 Appendix B : Questions for Project Evaluation 87 Appendix C: Agency Approval 88 Appendix D: U . B . C . - Certificate of Approval 89 Appendix E: Covering Letter 90 Appendix F: Survey Instrument 91 LIST O F T A B L E S T A B L E 1: A Comparison of the Mean Differences between 65 Staff-Surveyed & Consumer-Surveyed Groups v i LIST O F FIGURES F I G U R E 1: Percentages of Client Satisfaction 56 vu A C K N O W L E D G E M E N T In recognition of their tremendous contribution to this project, I thank Apr i l , Emmy, John, Rob and Zanna. Many thanks go to the staff of Greater Vancouver Mental Health Services who assisted in the organization and completion of this study. I thank both Paule and Mary for their guidance in this project. I would especially like to thank Nairn for the many hours he has spent editing and for the personal support he has provided. I thank Catherine for her friendship and endless encouragement over the past three years. Much thanks goes to my family whose love and support has guided me throughout my life. V l l l INTRODUCTION The concept of consumer participation has become popularized within the field of mental health. Some of the prevailing catch phrases used by community agencies, planning committees, and government policy-makers include "user involvement", "consumer input", "consumer-directed services" and "client consultation". Despite this change in terminology, the actual involvement of mental health consumers1 in organizational decision-making remains severely limited (Anthony, Cohen and Farkas, 1982; Centre for Research and Education in Human Services, 1984; Hutchison, Lord, Schnarr and Savage, 1985; Lord, Hutchison and Schnarr, 1987; Lord, Corlett, Farlow and Hutchison, 1987a; Warner, 1981; as cited in Lord, 1989). This trend is consistent with most areas of innovation and change where the language of change generally precedes increased activity and significant action (Rogers, 1983; as cited in Lord, 1989). The term "consumer participation" encompasses the involvement of consumers at three distinct levels of the mental health system. First, at the individual treatment or service level, consumers are involved in the development of individual treatment plans and support services. Second, consumers are involved in the agencies and organizations providing mental 1 The term consumer was selected for use i n this paper following a discussion held by the five consumer-researchers involved i n this project. During the course of this discussion the group identified "consumer" as the preferred term of reference. 1 health services. This includes participation on boards and committees, participation in agency research and evaluation, as well as participation in consumer-directed organizations. Third, consumers are actively involved in community, provincial, and national planning and policy decision-making. Traditionally, consumers have had little opportunity to participate at any of these levels of involvement. Paternalism, bureaucracy, the dominance of the medical model, and the professionalization of mental health services have all contributed to maintaining the subordinate status of consumers (Lord, 1989). This oppression cannot be overcome through token consumer representation. Rather, the structural inequalities which govern our current mental health system must be diminished. A t the organizational level, mental health professionals, administrators, and researchers must be will ing to develop and maintain a strong commitment to involving consumers in the development, implementation, and evaluation of services. The present study focuses upon the involvement of consumers in service evaluation. Since the early 1970's, interest in assessing the attitudes of mental health consumers toward their treatment has increased. The majority of such studies have reported that consumers are generally satisfied with their care. However, factors such as social desirability, acquiescence, and reactivity have been postulated to produce these positive results. In 2 addition, methodological problems including inadequate reliability, sampling bias, and lack of sufficient control over data-gathering procedures have confounded results and placed the validity of such studies into question. Previous studies propose that consumer involvement in the evaluation process may enhance validity and simultaneously provide consumers with an opportunity to gain more control over the treatment process. A study conducted by Polowczyk, Brutus, Orvieto, Vidal & Cipriani (1993), suggests that consumer-administered surveys may permit more openness or truthfulness by minimizing socially desirable or acquiescent response sets. In the present study, consumers and staff administered a satisfaction survey to determine whether mental health consumers would respond differently to other consumers than to staff when questioned about their level of satisfaction with the services they had received. Additionally, the present study gathered information on the experiences of the five consumers involved as researchers in the project. Thus, the purpose of the study was twofold: to determine the effects of consumer participation in the process of administering client satisfaction questionnaires to mental health consumers; and to examine the experiences of five mental health consumers who were involved as researchers in the project. The team of consumer-researchers participated in the development of the survey instrument, the collection and analysis of the data, and the dissemination of the research results. A 3 comparison was made between the results of the questionnaires administered by consumer-surveyors and those administered by staff-surveyors. Traditionally, the emphasis of social work has been on the individual. As stated by Ben Carniol, the profession's role was restricted to adjusting clients to prevailing social conditions - perhaps minimally improving their lot, but seldom changing it (1987). However, in the more recent history of the profession, many social workers have come to understand that it is not enough to simply deliver services based on a professional notion of "what is best for the client". Rather, we must begin to recognize the structural inequalities that create and maintain conditions which work against the best interest of the client. As Jeffrey Galper suggests, making the link from individual actions to the larger social problems is the key to moving social work into a more effective sphere of operation, thus contributing toward movement building and structural change (Carniol, 1987). Within the field of mental health, social workers are among those professionals who have begun to reconstruct the client-worker relationship. Rather than the social worker deciding which of a client's ideas, feelings and behaviours require change, the process becomes a shared one (Carniol, 1987). Rejecting the top-down approach which sets the client and worker apart, Helen Levine writes: "I like the notion of shared work, shared learning, shared perspectives on the part of both the provider and consumer. 4 Each brings her own knowledge, skills, experience and tasks -and a recognition of the human fallibility of both - in working toward change." (as cited in Carniol, 1987). The intent of the present research project was to promote the involvement of consumers in the evaluation of mental health services. M y approach in facilitating the research process was based upon mutual respect and equality between myself and each of the consumers on the research team. Encouraging the involvement of consumers in mental health research is one of many ways in which social workers can continue to foster more egalitarian client-worker relationships. The following chapter presents several theories used to examine the oppressive features of the current system of mental health services. Chapter two provides a review of the literature pertaining to consumer satisfaction surveys, consumer participation and the experiences of mental health consumers as researchers. Chapter three discusses the methodology of the present study, chapter four contains the results, and the fifth chapter presents the conclusions and implications made on the basis of the study's results. 5 C H A P T E R O N E T H E O R E T I C A L F R A M E W O R K : O R G A N I Z A T I O N T H E O R Y , L I B E R A L I S M , S T R U C T U R A L S O C I A L W O R K , F E M I N I S T T H E O R Y & P O W E R ISSUES The theories presented in this chapter provide various approaches to understanding the complexity of consumer oppression. The chapter begins with an overview of organization theory which provides a cognitive framework for examining many of the structural, social and political barriers impeding consumer participation within the current mental health system. This analysis is then expanded upon through an exploration of liberalism, structural social work theory, and feminist theory which provide both individual and societal perspectives on the problem of consumer oppression. Finally, a review of Foucault's theory on power relations and several feminist perspectives on power deepens the analysis of this critical issue in relation to the oppressive features of the mental health system. Organization Theory Organization theory addresses the issues of bureaucracy, politics, power and authority which relate directly to the institutional obstacles sustaining the subordinate identity of consumers. Bureaucracy Today's community mental health services fit the criterion made 6 explicit in Max Weber's description of a formal organization that is bureaucratically organized. In his classical theory of bureaucracy, Weber outlined the following distinctive characteristics: (1) organizational tasks are distributed among the various positions as official duties; (2) the positions or offices are organized into a hierarchical authority structure; (3) a formally established system of rules and regulations governs official decisions and actions; (4) there is a specialized administrative staff whose task it is to maintain the organization and, in particular, the lines of communication in it; (5) officials are expected to assume an impersonal orientation in their contacts with clients and with other officials; (6) employment by the organization typically constitutes a lifelong career for officials (Weber, 1946; as cited in Blau, 1974). Each of these characteristics reflect the processes of domination and control which are inherent in relations of subordination. Within social services, the structure of the organization legitimizes the politics and the professionals but fails to validate the knowledge and experience of the consumer. Weber's analysis of bureaucratic structures emphasizes their utility. Weber maintained that the effectiveness and efficiency that bureaucracy imparted to large-scale administration had many positive functions. However, Weber also identified certain potentially negative consequences of bureaucracy, including its tendencies toward monopolizing information 7 and resisting change. Weber suggested that bureaucracies tend to monopolize information making it difficult for outsiders to determine the basis on which decisions are made. Every bureaucracy seeks to increase the superiority of the professionally informed by keeping their knowledge and intentions secret....The concept of the 'official secret' is the specific invention of bureaucracy and nothing is defended so fanatically by the bureaucracy as this attitude. (Weber, 1946; as cited in Blau & Meyer, 1987) To monopolize knowledge and intention is to sustain a position of power over those not privy to such information. Included among the outsiders, of course, are the consumers of the bureaucratic organization. Particularly within the field of mental health, the bureaucratic system seeks to protect the "expert" knowledge of the professional. The individual's experience is thus defined according to the professional/institutional process of assessment, diagnosis and treatment. The impact of this process on the consumer is indeed disempowering as the locus of control lies completely in the hands of the professional. Another negative consequence of bureaucracy, Weber noted, was that the overall pattern of administration which is consistent with the bureaucratic model is not easily changed. "Once it is fully established, bureaucracy is among those social structures which are hardest to destroy" (Weber, 1946; as cited in Blau & Meyer, 1987). This resistance to change 8 is evident within today's mental health system. For example, although there has been a significant shift from institutionalized care to the provision of community services, this change of orientation was not accompanied by a substantial change in the bureaucracy of the organization. "Despite delegation of more decision-making and control to local units, services remain professionally controlled, and major changes in service philosophy or program development are uncommon" (McKenzie, 1994; as cited in Johnson, McBride & Smith, 1994). The relentless protection of the bureaucratic organization is deemed necessary by those whose livelihood is dependent upon the very need for specialization and expertise: the professionals. Both the positive and negative effects of bureaucracy can be understood as the outcomes of organizing principles intended to achieve coordination and control (Blau & Meyer, 1987). The bureaucratic organization seeks to attain effectiveness and efficiency through professional expertise and predictability. These same features are what make bureaucracies such powerful institutions having the capacity to resist external forces which may be pressing for change. The bureaucratic organization within the mental health system further oppress their consumers by rendering them dependent upon the bureaucracies and disparaging their ability to interpret their own needs and experiences. 9 Organizational Politics Organizational politics involve those activities which attempt to influence decisions regarding critical issues that cannot be readily resolved and for which there are differing points of view. Jeffrey Pfeffer, writing on power within organizations, provided a clear conceptual definition of organizational politics: ...those activities taken within organizations to acquire, develop, and use power and other resources to obtain one's preferred outcomes in a situation in which there is uncertainty or dissensus about choices. (Pfeffer, 1981; as cited in Shafritz & Ott, 1992) This conception of politics clearly states the fundamental relationship between politics and power. Pfeffer (1981) suggests that power can be understood as a force, a store of potential influence and that politics involves the activities and behaviours through which power is developed and used within organizational settings. According to Pfeffer (1981), "Power is a property of the system at rest; politics is the study of power in action" (Shafritz & Ott, 1992). Essentially, politics is the pursuit and/or exercise of power. From the definition provided above, it is evident that one of the key functions of organizational politics is to protect and enhance the self-interest of certain individuals or groups. Political activity, therefore, involves intentional acts to overcome resistance and opposition to such interests. The 10 increasing trend toward consumer-driven services has indeed been perceived as a threat to the interest of mental health professionals and has certainly been met with resistance. While some organizations may claim to promote consumer participation, such efforts remain highly controlled by the organization (i.e., who among the client population wi l l participate, the extent to which they participate, and whether or not they are given any formal decision-making power within the organization). In such circumstances one must pose the following questions: Who is most likely to benefit by the promotion of consumer participation? Whose interests are being protected or enhanced when consumers actively participate in the development, implementation and evaluation of mental health services? Such questions, though they are not easily answered, wi l l be addressed below. The political strategies of the mental health system are by no means overtly oppressive. Indeed, the probable intention of most service providers and administrators is to serve the best interests of the client. However, reality dictates that the politics of such an organization are driven not only by good intentions but more specifically by the need for scarce government funding. In order to maintain funding, the service organization must appear to remain responsive to public concern. The emergence of consumer values during the early 60's brought the 11 concept of consumer participation to light. Accountability, quality of life, and participation became important phrases in the everyday life of North Americans (Gartner & Riessman, 1974). In response to this upsurge of consumer power, social service organizations began to incorporate consumer-related values into the development and evaluation of services. And so the question remains: In whose interest did these values become operationalized? Clearly, the mental health organizations benefit as funding has been continually granted to this sector of social services. Consumers have also benefitted as their role and power within the formal organization has expanded: sitting on administrative and community boards, participating in public education projects and implementing consumer-driven services. However, one must not overlook the fact that service organizations control, to a great extent, the scope over which consumer power can be exercised. Power & Authority According to Jeffrey Pfeffer, most definitions of power include an element indicating that power is the capability of one social actor to overcome resistance in achieving a desired goal (Pfeffer, 1981; as cited in Shafritz & Ott, 1992) ; R. H . Tawney, in his book entitled Equality, defined power as the "...capacity of an individual, or group of individuals, to modify the conduct of other individuals or groups in the manner which he(sic) 12 desires, and to prevent his own conduct being modified in the manner in which he does not" (Tawney, 1931; as cited in Blau 1964). Tawney's definition explicitly directs attention to the inequality of power relations. Blau (1964), in support of this definition, states that "interdependence and mutual influence of equal strength indicate lack of power." Thus the two concepts (inequality and power) are inextricably intertwined. Blau suggests that providing needed benefits to those who cannot easily do without is the most prevalent way of attaining power. By supplying services in demand to others, a person establishes power over them. If he(sic) regularly renders needed services they cannot readily obtain elsewhere, others become dependent on and obligated to him for these services, and unless they can furnish other benefits to him that produce interdependence by making him equally dependent on them, their unilateral dependence obligates them to comply with his requests lest he cease to continue to meet their needs. (Blau, 1964) Blau's discussion of dependence and obligation addresses the nature of the relationship between mental health organizations and their consumers. By providing essential services to individuals who cannot afford the services of private practitioners, mental health organizations establish a position of power over their consumers. The dependence of consumers on the service organization places an informal, yet harshly felt, obligation upon the consumer to comply with whatever forms of treatment are made available. Weber (1947) emphasized the critical role of legitimacy in the 13 exercise of power (Shafritz & Ott, 1992). When power is legitimated the exercise of influence is subtly transformed and power becomes authority. Within formal organizations, norms and expectations develop that make the exercise of influence expected and, to some extent, desired (Pfeffer, 1981; as cited in Shafritz & Ott, 1992). Social control of one's behaviour by others becomes an accepted part of organizational life. Once power is transformed into authority, it becomes increasingly difficult to resist. This transformation of power into authority reflects the institutionalization of social control. According to Pfeffer (1981), authority is maintained not only by the resources that produced the power, but also by the social pressures and norms that sanction the power distribution and which define it as normal and acceptable (Shafritz & Ott, 1992). Such social acceptance and approval add stability to the situation, making the exercise of power easier and more effective. This form of societal validation reinforces the authority held by professionals within mental health organizations. The bureaucratic organization is viewed by most citizens as expressing the "goodwill" of the public toward the disadvantaged (Armitage, 1988). The public has therefore accepted, almost uncritically, the authority held by administrators, doctors, nurses, and social workers under the assumption that "good" is being done. This assumption, as Andrew Armitage states, "...represents a major obstacle 14 to the consumers' criticisms being heard." Beyond Organization Theory: Liberal, Structural & Feminist Paradigms Organization theory provides a cognitive framework for exploring many of the structural, social and political barriers impeding true consumer participation. However, this theory base does not extend to all of the factors influencing the oppression of mental health consumers. Theories which move beyond the organizational level to the societal and individual spheres must be included in the analysis of the problem. In broadening the perspective in this way, it becomes possible to gain an understanding of the relationship among all factors impinging on the oppression of consumers. The following three theories wi l l be reviewed to expand upon the organizational perspective: liberalism which provides a framework encompassing the current societal context of the problem; structural social work theory which provides an alternative to liberalism that is consistent with the initiative of consumer participation; and feminist theory which provides a framework for understanding oppression at an individual level. Robert Mullaly, in his presentation of the liberal paradigm, states that Canada is largely a liberal society. He suggests that the Canadian welfare system not only reflects liberalism and its attendant values, but reinforces them as well (Mullaly, 1993). As the societal context of consumer 15 oppression is clearly immersed in liberal ideology, an analysis of liberalism is necessary to gain some insight into this form of oppression. Contemporary liberalism embraces the value of individual freedom. According to liberal ideology, the purpose of government intervention is to maximize individual welfare by removing obstacles to self-sufficiency. Mullaly (1993) suggests that liberals view society as a collection of individuals with little sense of community or collective responsibility toward the well-being of others: This individualistic view helps to absolve people from responsibility for the well-being of others in society. There is no obligation or responsibility for others. Anything done for others is carried out either on pragmatic grounds (i.e., it is more efficient or it wi l l dispel social unrest) or on humanitarian grounds, which often leaves deprived or disadvantaged persons to the vagaries of charitable and paternalistic whims of others. (Mullaly, 1993) Liberalism supports the individual pursuit of self-interest as opposed to collective societal goals. This individualistic perspective can only contribute toward deepening the sense of isolation and worthlessness prevalent among those who have been disadvantaged by living in a system which has no mechanism for the redistribution of power, wealth, and other resources. According to C. B . MacPherson (1962), the difficulties of modern-liberal-democratic theory lie in its possessive quality which is found in its conception of the individual as essentially the proprietor of his own person or capacities, owing nothing to society for them. "The individual is viewed 16 neither as a moral whole, nor as part of a larger social whole, but as an owner of himself (MacPherson, 1962). This emphasis on the individual clearly negates the concept of collectivism which is fundamental to radical feminist theory. Radical feminism upholds the idea that one's own power as an individual is inextricably bound to the collective power of an oppressed group. According to this perspective, consumers would ideally take matters into their own hands by forming personal and political support groups, thereby reducing isolation and increasing mutual support (Carniol, 1987). Liberal ideology equates the concept of equality with that of equal opportunity. Liberals accept inequality of circumstance based on this belief in equal opportunity assuming that no individual has any more freedoms or liberties than anyone else. "If a person fails in society it is because he or she did not take advantage of available opportunities" (Mullaly, 1993). No consideration is given to the reality of structural inequality. There is no effort to eliminate it, only to reduce it by providing opportunity through government intervention. For example, liberals recognize that the imperfections of capitalism create difficulties for some people. Therefore, they support government intervention into the economy in order to compensate for the inherent instabilities of the economic structure. The objective of the intervention is to restore the system to a state of 17 equilibrium; to evoke change within the system as opposed to any fundamental change of the system (Mullaly, 1993). This approach is in direct conflict with radical feminist theory which calls for the transformation of oppressive social structures (Ollenburger & Moore, 1992). As Ben Carniol has stated, "inequality and oppression are rooted within the institutionalization of the domination-dependency patterns that govern our major social structures" (1984). From a feminist perspective, it is essential to address the reality of how such inequalities impact on the individual. Within the field of mental health, it is particularly important for social workers and consumers to become co-investigators of unequal social relations and of potentially empowering responses to those relations. The purpose of the welfare state, according to liberal ideology, is to diminish the negative effects of capitalism. Liberals do not consider the welfare state to be a means for pursuing social equality or for promoting social or economic change (Mullaly, 1993). Its primary objective is to provide a guaranteed minimum income and to ensure access to basic standards of health care, housing, and education. Additionally, the welfare state carries out functions of socialization, social control, and stabilization for the prevailing social order by reinforcing the norms, behaviours, institutions and values of liberalism (Mullaly, 1993). Paradoxically, then, implicit in the social services is the affirmation of oppression and exploitation of humans by 18 humans, and the negation of equality of rights, responsibilities, and dignity and of genuine liberty and self-actualization for all. (Gi l ; as cited by Mullaly, 1993) Thus, social services become part of the problem rather than the solution. Feminists have addressed this dilemma by integrating the personal and political dimensions; working individually with social service consumers within a politics of transforming dominant social structures. The feminist view of the need for social transformation is much more congruent with structural social work theory than with liberalism. Structural social work theory views social problems as arising from a specific societal context (liberal/neo-conservative capitalism) rather than from the failings of individuals (Mullaly, 1993). In light of this view, structural social work seeks to change the social system rather than the individuals who fall victim to current societal arrangements. Mullaly (1993) indicates that the goal of structural social work is twofold: (1) to alleviate the negative effects on people of an exploitative and alienating social order; and (2) to transform the conditions and social structures that cause these negative effects. Like feminism, structural social work acknowledges the fact that our current social structures harm, oppress, and alienate people along lines of class, gender, race, and ability. Structural social work theory approaches social change from all three levels of our social structure: the societal, the institutional, and the 19 individual (Mullaly, 1993). A t the societal level, the task is to challenge the dominant ideology through consciousness-raising in respect to the alienating and oppressive features of our present liberal-capitalist system. At the institutional level, the objective is to minimize the control functions and maximize the liberating features of all social institutions, most particularly the social welfare institution. At the level of individual social relations, the goal is to break down the oppressive relations around us and to attend to the way in which we conduct our personal lives, being cautious not to contribute to the reproduction of current social relations based on racism, sexism, ageism, and so on. A n important aspect of structural social work theory is its dialectical analysis. Mullaly (1993) states that the analysis is based on a "...view of society and social processes as containing contradictory opposites that must be unravelled and understood." The mental health system, for example, has both social care (supportive counselling) and social control (committal) functions. In other words, the system contains contradictory elements. These elements must be recognized in order to maximize the liberating potential of the service and minimize the repressive tendencies. In this way, dialectical analysis helps to reveal the complex interplay between individuals and their environment and provides direction for social work practice. 20 Perspectives on Power A n exploration of societal, institutional, and individual power relations is critical to one's understanding of oppression. Michel Foucault's theory of power provides a unique perspective on the emergence of social power and more specifically on the power relations which have come to exist among psychiatrists and the "mentally i l l " . Feminist theory also provides a unique perspective on power, particularly in relation to gender. Foucault's Theory of Power Foucault seeks to identify basic social dispositions that underlie the institutional processes of the maintenance of social systems. He conceives of social systems in general as networks of social power in which knowledge formations assume the special function of augmenting power. Foucault proposes that power is represented as a contractually regulated or forcibly acquired possession that justifies or authorizes the political sovereign in the exercise of repressive power (Honneth, 1991). In both cases, Foucault maintains that the actor who is in possession of power utilizes apparently suitable means to carry out those prohibitions and instructions that allow the objectives of rule to be realized. Foucault adds that power should not be thought of as a fixable property, as the enduring characteristic of an individual subject of a social group, but rather as a fragile and open-ended product of strategic conflicts between subjects 21 (Honneth, 1991). Thus, Foucault concludes that the acquisition and maintenance of social power takes place not in the form of a one-sided appropriation and exercise of rights of decree or instruments of compulsion but rather in the shape of a continuous struggle of social actors among themselves (Honneth, 1991). Social power is therefore the momentary result of the success with which one of the competing subjects is able to settle the dispute in his/her favour. Foucault argues that positions of power remain constantly exposed to the risk of unrestrained social conflict. This argument is critical to one's understanding of resistance. Although power and authority are deeply entrenched within the structure of the bureaucratic organization, such organizations are not immune to resistance. Rather, as Foucault suggests, a continuous struggle exists among the social actors competing for positions of power. In the struggle between consumers and mental health professionals, it is the professionals (supported by both legal norms and moral attitudes) who have been most successful in bringing about their own objectives. However, the resiliency and determination of consumer groups over the past twenty years to gain power both within and outside of the mental health system are not to be overlooked. Among those consumers who have joined together in the struggle to transform the system, there exists a strength which cannot be extinguished by the authority of the 22 bureaucratic organization. Foucault also examines the methods (technologies) of power acquisition that are utilized in modern societies. He emphasizes that modern methods of power display productive instead of repressive effects. In other words, they create rather than repress the energy of social action. Foucault identifies the concept of "knowledge" as one of three modern techniques of power. ... power produces knowledge (and not simply by encouraging it because it serves power or by applying it because it is useful); that power and knowledge directly imply one another; that there is no power relation without the correlative constitution of a field of knowledge, nor any knowledge that does not presuppose and constitute at the same time power relations. (Foucault, 1979) This perspective on the link between knowledge and power is particularly significant to the power relations among mental health consumers and professionals where the personal and practical knowledge of consumers is devalued in comparison to the empirically based knowledge produced by professionals. The domination of expertise over common knowledge in decision-making, the production and definition of what legitimate knowledge is, and the limited access to information are key issues linking the knowledge industry to the acquisition of power (Gaventa, 1993). Knowledge production is not accountable to the needs of the oppressed people who are 23 most deeply affected by it, but to an ideology which serves to justify the superiority of the expert - the ideology of science and objectivity. Within the field of mental health, the majority of research is carried out by professionals working within the system in the interest of maintaining the existing power structures, rather than by consumers in the interest of change. Furthermore, much of the knowledge that is produced within the field is communicated through journals, meetings, and networks - information generally available only to those with professional status. It is written in language designed to separate the professionals even further from the common people, including those who utilize their services. The control of knowledge lies within the hands of the few and permits them to exercise power over the lives of many (Gaventa, 1993). Foucault's theory that knowledge and power are inextricably bound also relates to his theory regarding the established authority of psychiatrists. Foucault, in his writings on The Birth of the Asylum, expressed that Philippe Pinel and Samuel Tuke (both medical superintendents of asylums during the late 1700's) opened the asylum to medical knowledge. However, Foucault maintains that they did not introduce science, but a personality, whose powers borrowed from science only their disguise, or at most their justification (Foucault, 1965). Foucault expressed that the physician's powers were of a moral and 24 social order; "they took root in the madman's minority status, in the insanity of his person, not of his mind" (Foucault, 1965). Life in the asylum as Tuke and Pinel constituted it permitted the emergence of a delicate structure that formed a microcosm in which were symbolized the massive structures of the bourgeois society and its values: "Family-Child relations, centered on the theme of paternal authority; Transgression-Punishment relations, centered on the theme of immediate justice; Madness-Disorder relations, centered on the theme of social and moral order" (Foucault, 1965). According to Foucault, it was from these values that the physician derived his power to cure. In the eighteenth-century, this power had nothing extraordinary about it; it was explained and demonstrated in the efficacy of moral behaviour (Foucault, 1965). However, as Foucault explains, the meaning of this moral practice soon escaped the physician, to the extent that he/she enclosed his/her knowledge in the norms of positivism. ... from the beginning of the nineteenth century, the psychiatrist no longer quite knew what was the nature of the power he(sic) had inherited from the great reformers, and whose efficacy seemed so foreign to his idea of mental illness and to the practice of all other doctors. (Foucault, 1965) Foucault concludes that the authority that psychiatrists have borrowed from order, morality, and the authority of the family now seems to derive from within themselves; it is simply because they are doctors that they are believed to possess power. 25 Feminist Perspectives on Power Miriam Greenspan, Bonnie Burstow, and Phyllis Chesler are three feminist authors who have specifically addressed the issue of power relations within psychiatry and the mental health system. Not unlike Foucault, Greenspan (1983) addresses the myth that the care of "mental illness" requires a special set of knowledge and skills known only to the "Expert". Burstow (1992) and Chesler (1989), also expand upon Foucault's theory, examining the origins of psychiatry and "mental illness" and exploring the abusive nature of the worker-client relationship. Each of these authors gives particular attention to gender, race and class in their analysis of the mental health system. Greenspan states that within the mental health industry, the Expert is the psychiatrist; typically white, male, and upper-middle class. He is a doctor. He makes diagnoses and prognoses, dispenses treatment, prescribes medications, and writes orders (which nurses carry out)... the psychiatrist sits behind a desk (in former days, a couch). From this superior vantage point, he administers the talking cure. His judgements are impeccable. His rare spoken words are highly expensive. He is smoothly authoritative and aloof as a god. (Greenspan, 1983) Although some changes have occurred over the twelve years since Greenspan wrote this passage, the underlying theme of domination is still very much in existence today. Burstow states that psychiatry is "fundamentally problematic", that it 26 has no viable scientific or conceptual foundations (1992). According to the author, mental illness is essentially a metaphor that has been treated as i f it were a literal truth and that is backed up by the power of the state. Burstow maintains that the state "...gives psychiatrists the horrendous power to name and lock up people who may or may not be having emotional difficulty and treat them for diseases that have no basis in fact" (1992). Burstow refers to labelling theorists who indicate that from the outset "...madness was a relationship with power at its base" (Burstow, 1992). The author strongly asserts that psychiatrists are given undue power over peoples lives and that many have suffered as a result. Chesler (1989) argues that sex-role stereotypes lay behind much of what has been defined as mental illness. The author notes that women have traditionally been punished my men, and by male therapists in particular, for independent, creative, and self-assertive behaviour. Through the use of autobiographical, biographical, and "case history" material, Chesler exposes the physical, mental, and sexual abuse experienced by women committed to psychiatric institutions and state hospitals. The author states that a "double standard of mental health...one for women, another for men, seems to...unscientifically dominate most theories - and treatments - of women and men" (Chesler, 1989). Chesler documents the extent to which women have been disproportionately incarcerated and labelled mentally i l l in comparison 27 to men. The author maintains that traditional and contemporary clinical theories and practices fail to meet the needs of women as they are based upon the oppressive system of a patriarchal society. In one's analysis of the oppressive features of the mental health system, it is important to note that while the majority of psychiatrists are male, almost two-thirds of the adult population of general psychiatric, community mental health, and outpatient psychiatric facilities are women (Greenspan, 1983). As Greenspan argues, these figures reflect the notion that symptoms of mental illness are, for the most part, the systematically socially produced symptoms of sexual inequality (1983). The problem is not that of female mental illness; it is a matter of how women are viewed and treated both inside the mental health system and in the surrounding society that it mirrors. Burstow notes that psychiatric thought and practice is inherently shaped by the "elite male vision" and that it is sanctioned by patriarchal capitalism (1992). Greenspan contends that therapists, including social workers, often isolate the individual from his/her social, historical, and economic context. The therapist's emphasis on the individual reconfirms the client's pre-existing analysis that the real areas of concern are their own personal inadequacies - and the larger social context quickly drops from sight (Lerner, 1986). A n analysis of gender, racial, and class relations is imperative to helping 28 consumers understand themselves in relation to their society. Therapy may help people cope with certain intolerable social conditions, but it cannot begin to improve those conditions unless it contributes to raising the consciousness of consumers so that they wi l l be less likely to tolerate them. Summary The mental health system in Canada is currently striving to ensure consumer participation in order to give consumers an opportunity to influence decisions and actions that effect them. Examples include representation on boards and committees, consumer advocacy within institutions, consumer advisory committees, and formal consultation with consumers through public hearings. However, the promotion of consumer participation does not ensure an increased level of consumer control (Church & Reville, 1989). As stated by Kathryn Church and David Reville, consumer control does not exist until "...the structure of an organization ensures that consumers have the power to make binding collective decisions on all issues within the mandate of the organization" (1989). To date, there has been no significant shifts in the power distribution within the mental health system. The oppression continues though it may be partially veiled under the effort to promote consumer involvement. The five theories used to examine the issue of consumer oppression provided various approaches to understanding the relationship among the 29 many variables impinging on this social problem. Liberalism was seen as supporting the bureaucratic structure, the power imbalances, and the politics presented within the framework of organization theory. A n analysis of liberalism and organizational theory provides some insight into the current state of Canada's mental health system. Foucault's theory on power and Greenspan's critique of the mental health system provide a broader perspective on power as it relates to the oppression of mental health consumers. Feminist theory and structural social work theory challenge the current system and guide an approach to practice that is transformational. Social transformation is essential to a vision of consumer empowerment as a basic redistribution of power within society is necessary. The growth of consumer involvement is inextricably bound to the rate at which the power relationships change within the mental health field (Church & Reville, 1989). 30 CHAPTER TWO L I T E R A T U R E REVIEW The literature review presented in this chapter encompasses four subjects relating to the objectives of the present study: consumer satisfaction studies in mental health research, consumer participation in the evaluation of mental health services, experiences of mental health consumers as researchers, and the comparison of consumer and staff-administered surveys of consumer satisfaction. Consumer Satisfaction Studies in Mental Health Research Consumer satisfaction surveys have become a popular method of assessing the extent to which mental health services are meeting the wants and needs of their clients. This initiative to increase the direct involvement of consumers in the evaluation of mental health services has coincided with the rising of the consumer movement in this field (Giordano, 1977; Hart & Bassett, 1975; Lebow, 1982; Levkoff & Deshane, 1979; Margolis, Sorenson & Galano, 1977; as cited in Heath, Hultberg, Ramey & Ries, 1984). In a brief review of consumer satisfaction literature, Heath et al. (1984) reports the following advantages of consumer satisfaction surveys: they document the benefit of services, provide useful information to aid in the decision-making process; they are simple to administer; they increase the validity of other outcome measures; they encourage a positive relationship between 31 mental health organizations and their communities; and they provide a unique and valuable perspective on treatment that would not otherwise be available. Despite this favourable overview, the evaluation of consumer satisfaction measures has not fully escaped criticism. Numerous studies have focused their investigation on the limitations of consumer satisfaction measures (Lebow, 1982; Pelletier, 1985; Russell, 1990; Sabourin, Bourgeois, Gendreau & Morval , 1989; Sabourin, Laferriere, Sicuro & Coallier, 1989; Sainsbury, 1987). In 1982, Jay Lebow composed a major review of the literature on the evaluation of consumer satisfaction with mental health treatment. Lebow notes that during 1970's and early 80's consumer satisfaction surveys had become a standard part of the practice of many mental health facilities, particularly community mental health centers (Ellsworth, 1975; Margolis, Sorenson & Galano, 1977; Sorenson, Kantor, Margolis & Galano, 1979; Windle & Paschall, 1981; Zusman & Slawson, 1972; as cited in Lebow, 1982). Lebow indicates that the rising popularity of such surveys could be attributed to the following factors: the movement to a more consumer-oriented society, increased financing of treatment services by government and third-party payment, the broadened make-up of the clientele, and the relative simplicity and ease of administering measures of consumer satisfaction. Lebow states that survey methods are the most widely used 32 means of gathering data on consumer satisfaction. In an overview of the methodological issues in studies assessing consumer satisfaction, Lebow addresses several factors pertaining to the validity of the survey instruments and the resulting data, which remain relevant to the present body of consumer satisfaction research. Lebow (1982) notes that the failure of consumers to respond to surveys is a primary source of sampling bias which threatens the validity of consumer satisfaction research. Among the studies reviewed for the article, Lebow found response rates to be low. O f the 31 studies indicating return rates, 10 reported rates between 21% and 40%, eight between 41% and 60%, seven between 61% and 80%, and six between 81% and 100% (Lebow, 1982). Lebow notes that the studies reporting high rates of return were virtually limited to "captive samples" and that the typical phone survey averaged 41%. Furthermore, Lebow states that studies do suggest respondents differ from nonrespondents in ways that are likely to affect the reporting of satisfaction. For example, respondents are more likely than nonrespondents to have mutual terminations with their therapist (Denner & Halprin, 1974a, 1974b; Frank, Salzman & Fergus, 1977; McWil l iams, Lewis, Balch & Ireland, 1979), longer treatments (Frank et al., 1977), and treatments judged to be successful by therapists (Grob, Eisen & Berman, 1978; Strupp et al., 1969); all conditions which imply that the respondent 33 group is likely to be more satisfied than the whole sample (as cited in Lebow, 1982). Therefore, the potential distortion from selective attrition must be considered in conducting and evaluating any consumer satisfaction study. Lebow also notes that acquiescence, social desirability, and reactivity are possible sources of distortion in consumer responses which erode the validity of consumer satisfaction studies. In a study conducted by Ware (1978), 10% of consumers were found to be totally acquiescent and 40% were somewhat so (as cited in Lebow, 1982). Lebow suggests that variation of the favourableness of statements about satisfaction within scales can reduce this problem. Social desirability (Jackson & Messick, 1967) and reactivity (Webb et al., 1966) are also likely to inflate ratings (as cited in Lebow, 1982). Lebow indicates that consumers may alter their responses as they consider who wi l l read the surveys, how the surveyors wi l l regard them, and how the surveys wi l l affect their future requests for service and the careers of the practitioners who offered them treatment. Lebow suggests that distortion can be expected to increase as surveys are more directly presented by staff, as anonymity decreases, as consumers are more under the control i f the institution, and as repercussions for staff from the survey increase (1982). More recent studies investigating the impact of desirability, confirm 34 that the construct validity of consumer satisfaction measures is affected by socially desirable responding (Sabourin, Bourgeois, Gendreau & Morval , 1989). However, this confounding effect is weak and the widely held conviction that consumer satisfaction reports are strongly biased by social desirability (Lebow, 1983; LeVois et al., 1981; Pascoe, 1983) does not rest on solid empirical ground (Sabourin, Bourgeois, Gendreau & Morval , 1989). In a follow-up study conducted by Sabourin, Laferriere, Sicuro, Coallier, Cournoyer, and Gendreau (1989), researchers conclude that consumers' tendencies to report high satisfaction levels and to suspend critical judgement may be conceptualized as a form of strategic self-presentation designed to make a favourable impression on one's therapist. Lebow (1982) notes two additional factors relating to validity: lack of control over procedure and lack of precise meaning for terminology. Lebow states that the lack of sufficient control over data-gathering procedures is often evident in reports of consumer satisfaction studies. He also indicates that terms such as "satisfied" and "helped" are denoted in different ways by different individuals and that this variability in meaning constitutes a further problem with the validity of consumer satisfaction surveys. Mary Russell (1990) addresses the limitations of consumer rating scales which are overly generalized as well as those which exclusively 35 measure the interpersonal aspect of social service delivery. Russell suggests that such measures produce inflated ratings as they fail to bring attention to the more discreet components of service which may vary in quality. Russell concludes that in order to obtain reliable consumer ratings, several separate and distinct factors that contribute to satisfaction must be measured. The three factors indicated in this study were quality of care, resource availability and accessibility. Recent research in the area of consumer satisfaction measures suggests that the role of consumers in the evaluation process be expanded (Polowczyk et al., 1993; Rapp, Shera & Kisthardt, 1993; Russell, 1990). Similarly, empowerment strategies imply that consumers be involved in all stages of the evaluation from the development of the survey instrument to the analysis and report of the findings (Rapp, Shera & Kisthardt, 1993). A n article by Sung Sil Lee Sohng (1992) provides a review of a participatory research approach based on an empowerment model. Sohng describes empowerment practice as emphasizing the primacy of consumer participation in the process of defining problems and generating solutions and strives for mutuality between worker and client. The author provides details of a participatory approach which engages consumers as partners in all aspects of the research process. Sohng concludes that, with genuine consumer participation in research, "consumers as research subjects" are transformed 36 to "consumers as partners," determining the directions of scientific and theoretical inquiry. Consumer Participation in the Evaluation of Mental Health Services Few studies have been published which document the participation of consumers in the evaluation of mental health services. However, in a study conducted by Edward Prager in 1980, a group of 10 mental health consumers developed an evaluation instrument for self-assessment. The results of the research conducted on the consumer-developed measure support the existence of discordant perspectives between consumers and workers on issues of mental health and mental illness, particularly regarding the content and correlates of "getting better" or change. The substantive reality of the consumer and presumably objective reality of the worker were mirrored in the contents of the evaluation instruments developed by the two groups, which were fundamentally different. Based on the results of the study, Prager suggests that consumers of mental health services, given the means and the opportunity, are capable of being actively and meaningfully involved in professional tasks and organizational responsibilities. Prager states that the consumers' singularly important qualification for this task is their intimate knowledge of themselves in both mentally i l l and mentally healthy states and concludes that " . . . i f treatment and its evaluation are to be responsive to clients' realities, the client's voice must be heard." (Prager, 37 1980) Only two other studies involving consumers in the evaluation of mental health services have been widely circulated. The first is a recent article by Morrell-Bellai and Boy dell (1994), which examines four separate research projects involving six consumer researchers; three of the four projects were evaluative studies of mental health services. A l l of the projects were initiated by the Queen Street Mental Health Centre in Toronto, Ontario. The responsibilities of the consumer-researchers varied among the different projects from administering quantitative measurement tools to conducting qualitative interviews. The second study, conducted by Plowczyk, Brutus, Orvieto, Vidal and Cipriani (1993), involved consumers in the administration of a consumer satisfaction survey to individuals attending numerous outpatient clinics, continuing treatment centres and a psychosocial club, all of which were operated by Kings Park Psychiatric Center in Suffolk County, New York. Kathryn Church (1989) suggests that the shortage of articles on consumer participation in mental health services may be partly attributed to the limitations of traditional research methods and to journal format requirements, both of which make it difficult to capture in print the multi-dimensional processes of consumer participation. Perhaps of equal importance is the fact that knowledge production is one of many areas 38 where the contribution of mental health consumers has traditionally been restricted: "The people social workers seek to help have not been judged to be important informants or collaborators in the execution of research." (Rapp, Shera & Kisthardt, 1993). During the 70's and early 80's, much of the consumer satisfaction research claiming to be participatory involved consumers as the subjects of study rather than partners in the process of investigation (Denner & Halprin, 1974a; Goyne & Ladoux, 1973; Hart & Bassett, 1973; Koltuv, Ahmed & Meyer, 1978; Love, Caid & Davis, 1979). More recent studies which have involved consumers in the process of developing methods and tools to evaluate services, or collecting and analyzing data, have generally limited consumer participation to specific phases of the research process as opposed to involving consumers throughout the entirety of the project (Morrell-Bellai and Boy dell, 1994; Polowczyk, Brutus, Orvieto, Vidal and Cipriani, 1993; Prager, 1980). Indeed, the literature on consumer participation in the evaluation of mental health services remains sparse. However, the existing body of knowledge in this area continues to grow as an increasing number of community mental health researchers initiate projects based on participatory research methods which highlight consumers' personal experiences and expertise. A n article by Rapp, Shera and Kisthardt (1993) presents a set of mental health research strategies which are intended to be more congruent 39 with the professed values of social work and the concept of empowerment than traditional, positivist research and evaluation strategies. The authors argue that mental health consumers should be involved in the formulation of research questions, the selection/development of measures, the collection of data, and the dissemination of research results. They propose that shifting the focus from evaluations based on pre-designated variables deemed relevant by professionals to exploring what holds value and meaning from the consumers' point of view requires the development and delivery of research protocols that place consumer-focused questions at the forefront of the research agenda. They conclude that practitioners must be will ing to identify consumers as the primary informants about what is wanted and needed from providers. Furthermore, they must be will ing to elevate consumers from the role of client to the roles of teacher and partner in a collective learning enterprise. Experiences of Mental Health Consumers as Researchers A small body of research based on the experiences of mental health consumers as researchers is just beginning to emerge. A n article by Morrell-Bellai and Boy dell (1994) is perhaps the most extensive study of consumers' experiences as researchers to date. This study examined the experiences of six consumers who were involved in paid employment as researchers in the mental health field. Semi-structured interviews were 40 conducted with each researcher in order to identify the benefits experienced as a result of their employment and to identify special needs that should be considered when employing consumers. Results of the Morrell-Bellai and Boy dell study (1994) indicate that consumers experience many personal benefits as a result of their employment as researchers including financial reward, education, the development of vocational skills and increased self-esteem. Results also confirm existing literature which suggests that consumer-researchers require adequate training and remuneration, consistent feedback on performance, and opportunities to provide input and effect decision making. Furthermore, consumers may require emotional support for personal difficulties, particularly when their job involves contact with other consumers. In addition to these previously identified needs, the study revealed three additional needs to be considered when employing consumers. First, the need to facilitate the development of collegial relations between consumer and non-consumer staff. Second, the need to provide consumers with office space and opportunities for regular face-to-face contact with their supervisor. Finally, the need to consider prior research experience. In situations where the consumer has little or no direct research experience, the work should be presented as a training opportunity. A n article by Jane White (1989) provides an account of the author's 41 personal experience as a committee member of the Canadian Mental Health Association's Consumer Participation Task Force in Winnipeg, Manitoba. White points out several important issues relating to consumer participation. She maintains that support should accompany any invitation to participate on boards, committees, or in agency projects. White states that encouraging consumer participation means providing support for people who are taking risks. She expresses that the drain on one's energy and emotional reserves is not often considered by mental health professionals. The author states that "When consumers comment on the mental health system, we recount personal, often painful, examples. We speak in the first person, not the academic third person. We give ourselves along with our knowledge." (White, 1989). White adds that due to the fact that illness effects the lives of consumers, establishing a system of alternative delegates who are available to fill-in when needed for speaking engagements and other responsibilities can assure continuity while reducing the pressure felt by the consumer. White (1989) also addresses the issue of consumer-professional partnership, noting that partnership among different members of the community including consumers, family members, professionals and community leaders can be demonstrated and strengthened by joint projects. White notes that while consumer participation in evaluating, planning and 42 implementing mental health services wi l l require investment of economic and social support by the present decision-making bodies, the return wi l l be a balanced mental health system meeting the true needs of the people. White concludes that the steps in consumer participation are inviting consumers, accepting and encouraging their contributions, recognizing their value, and working in partnership to change attitudes and systems. "Asking, listening, sharing, acting together - Consumer Participation." (White, 1989) A Comparison of Consumer & Staff Surveys of Consumer Satisfaction A study by Polowczyk et al. (1993) suggests that consumer participation in the assessment process can enhance the validity of consumer satisfaction studies and at the same time give consumers more control over their treatment. In the study, patients as well as staff conducted surveys of patients' satisfaction to determine whether psychiatric patients would respond differently to other patients than to staff when surveyed about the care they received. Results from this study indicate that involving consumers as surveyors in satisfaction studies produces findings which are lower in levels of satisfaction than those produced by staff-surveyors. The authors of the study expressed that consumer participation may improve the validity of satisfaction measures by minimizing socially desirable and acquiescent responses. The underlying assumption here is that consumers may be reluctant to express negative opinions about the services they are receiving 43 to professionals. This reluctance could be related to either a fear of negative repercussions such as loss of services or a desire to please the professional. The authors of this study suggest that further examination in this area is needed. Like the study by Polowczyk et al. (1993), the present study utilized a descriptive-comparative design. However, the present study differed significantly in three respects: the degree of consumer participation, the survey instrument, and the sample size. In the present study, the participation of consumers was not limited to the administration of questionnaires. Rather, a team of five consumer-researchers were involved in the development of the survey instrument, the analysis and interpretation of the data, and the dissemination of the research results. The survey instrument itself differed in that Polowczyk et al. (1993) utilized a nine-item survey which posed generalized questions such as "How would you rate the quality of service you received?" and "Did you get the kind of service you wanted?" (Larson, Attkisson, Hargreaves & Nguyen, 1979) whereas the measure developed for the present study contained 34 items addressing specific aspects of the service such as "Do you feel your psychiatrist understands you?" and "Are you treated with respect by your therapist?" The two studies also differed in sample size. Whereas the previous study obtained a sample of 530 mental health consumers, the present study 44 obtained a sample of 57. Several tasks performed during the planning phase of this project were vital to its successful completion. Initially, it was important to gain an understanding of the views of the staff, the team director, and the agency administrators regarding both participatory research projects and student research in general. Subsequently, I was able to identify which members of the organization I could draw upon for support and guidance as well as establish which members might offer some resistance to my proposed project. Before deciding upon how to elicit the team's interest and co-operation, I carefully considered the group dynamics among the staff at the team. Additionally, I attempted to keep everyone well informed and encouraged their input and feedback throughout the research process. The objective of these tasks was to form an alliance among all those involved or affected by the study, thereby diminishing any opposition toward it. Aside from my efforts toward securing an amicable climate for the project, there were several issues to consider regarding the needs of the consumers who had been selected to comprise the research team. Guided by the suggestions made by Morrell-Bellai and Boy dell (1994), I focused upon four primary considerations prior to the initial meeting of the research team: the remuneration, the creation of a supportive working environment, the establishment of a democratic decision-making process, and the 45 provision of the opportunity for consistent feedback. With the support of an agency administrator, I was able to secure enough funding from Greater Vancouver Mental Health Services to provide an hourly wage (presented in the form of an honorarium) for each of the consumer-researchers. The remaining three issues relate to the facilitation of the group process. Recognizing that the first meeting would set the tone for the remainder of the project, I developed an agenda which included the discussion of these last three critical issues. As a result of creating this agenda, the team established two group guidelines: to work toward consensus building, bringing decisions to a vote when a consensus could not be reached; and to set aside a brief period of time at the end of each meeting to address any questions or concerns. The researchers also agreed that mutual support was an important facet of a healthy working environment. The team members stated that they would be available to one another for support and I added that I too could be contacted throughout the week to discuss any concerns. The present study was designed to answer to following question: "Are the results of consumer-administered surveys significantly different than staff-administered surveys of client satisfaction with mental health services?" In addressing this question, the study attempted to determine the impact of consumer participation in the administration of client satisfaction 46 evaluations. 47 CHAPTER THREE M E T H O D O L O G Y Participants The research team for this project was made up of five mental health consumers and myself. A notice containing a summary of the research objectives and a description of the consumer-research positions (see Appendix A) was sent to each of the mental health team directors of Greater Vancouver Mental Health Service Society (G.V.M.H.S. ) to be distributed to their consumers. The first five of the 24 consumers who contacted me expressing their interest in the positions were selected to comprise the research team. Additionally, a small list was developed of individuals who were will ing to provide back-up i f necessary. The research team was made up of three women and two men between the ages of 30 and 45. Four of the five researchers had a diagnosis of major depressive or bipolar disorder. The fifth researcher was receiving supportive counselling but did not have a psychiatric diagnosis. Each of the researchers carried out the study to its completion. Survey participants included 57 individuals attending the adult program at Kitsilano mental health team operated by G . V . M . H . S . The adult program provides assessment, treatment, and support services to individuals aged 19 to 64 years with serious and persistent psychiatric disabilities. 48 The following inclusion and exclusion criteria were used to select participants for the study. The only inclusion criteria was current involvement with case management services from the Adult Program at the Kitsilano Mental Health Team. Exclusion criteria were (a) involvement with Kitsilano Mental Health Team's Family or Geriatric Program, (b) being in a psychotic or suicidal state to the extent that the ability to provide informed consent was impaired, (c) being affected by dementia or other forms of brain damage to the extent that the ability to provide informed consent was impaired. Consumers who attended appointments during the data collection period and met the selection criteria were asked to voluntarily participate in the study. O f the 57 individuals who agreed to participate, 32 were surveyed by staff and 25 were surveyed by consumers. Measure The questionnaire was developed by the team of five consumer-researchers specifically for the purposes of this study. The development of the questionnaire occurred over the course of four meetings. The team formulated a list of various determinants of satisfaction for the questionnaire during their first two meetings together. During their second meeting, the researchers also reviewed numerous client satisfaction measures that had been used in previous evaluations of mental health services. By the end of 49 the second meeting a list of 38 determinants had been formulated addressing the following service components: availability of services, access to resources, compatibility with therapist, impact of services and dignified treatment. During the third meeting, the team developed their first draft of the questionnaire consisting of 27 questions divided into four sections. Revisions to this first draft were made during the fourth meeting and included the addition of a fifth section: compatibility with psychiatrist. This draft of the questionnaire, containing 36 questions and five discreet sections, was pre-tested prior to the composition of the third and final draft. As facilitator, my role in the development of the survey included the following tasks: preparing meeting agendas and drafts of the developing questionnaire between meetings; providing information regarding the format of survey items; providing examples of standardized client satisfaction measures as well as surveys used previously within the organization; and facilitating group discussion and decision-making. The most significant contribution brought to this process by the consumer-researchers was their ability to identify satisfaction items which were relevant to consumer concerns based on their experiential knowledge of mental illness and community mental health services. The final measure contained 34 items divided into the following five sections: satisfaction with services, compatibility with therapist, 50 compatibility with psychiatrist, effectiveness of service, and respect. The first section utilized a five-point response scale including a "neutral" option, with anchor points for the scale ranging from "very dissatisfied" to "very satisfied". The sections on respect and compatibility with therapist and psychiatrist utilized a four-point response scale with anchor points ranging from "no, never" to "yes, always". The section on effectiveness also utilized a four-point scale with anchor points ranging from "no, definitely not" to "yes, definitely". A l l scales included a "not applicable/no opinion (N/A)" option. Each section provided ample space for comments. Demographic information was not included in the questionnaire as it is not relevant to the comparative design of the study. Furthermore, a previous study conducted by Tanner (1981) concludes that no client demographic variable has been consistently demonstrated to affect client satisfaction. Several other studies have found that the difference between respondents and nonrespondents in treatment and outcome are not paralleled by demographic differences (Burgoyne et al., 1977; Denner & Halprin, 1974a, 1974b; Ellsworth, 1979; Strupp et al., 1969; as cited by Lebow, 1982), therefore Lebow suggests that studies must test for differences in treatment characteristics and outcome rather than differences in demographic characteristics (1982). The reliability for this newly devised measure is unknown. The 51 validity of the measure was established through the process of pretesting the questionnaire among six consumers at the Broadway Mental Health Team. Responses to the pretest indicated a reasonable degree of face validity and content validity. Three of the six consumers expressed verbally that they had difficulty interpreting the meaning of two specific items on the questionnaire. The research team responded to this input by deleting these two items from the questionnaire as verbal feedback from pretest participants also indicated that they found the survey quite lengthy. The wording of another item was changed due to the verbal input of four pretest participants who expressed that they were unclear about the meaning of a phrase. With the exception of all the above difficulties, participants stated that they found the questionnaire both relevant and clearly worded. Content validity was confirmed by several mental health professionals at the survey site and academic researchers who reviewed the instrument. Procedures In order to gather information on the experiences of the consumer-researchers, verbal input was solicited throughout the research process and recorded in a written journal. Prior to the dissemination of the research results, a meeting was held specifically to provide the researchers with an opportunity to express their feelings and discuss their experiences of being involved as researchers in the project. Additionally, each of the researchers 52 completed a written evaluation of the project (see Appendix B). A descriptive-comparative survey design was utilized in order to examine client satisfaction with existing mental health services and compare the results of staff and consumer-administered surveys. Two participant groups (one surveyed by staff and the other by consumers) were surveyed over a two-week period. Clients attending appointments with their mental health workers during this time were asked to participate in the study providing they met the sampling criteria. The seven staff-surveyors, who were community mental health workers with the adult program of Kitsilano Mental Health Team, surveyed 32 clients. Twenty-five clients were surveyed by consumer- surveyors. Staff and consumer-surveyors administered the questionnaire on alternate days. On the days when staff administered the questionnaire, the procedure for administration involved the following tasks: staff screened clients according to the sampling criteria, introduced the study to participants, provided participants with a questionnaire, and directed participants to the conference room where a social worker was available to assist them in the completion of the questionnaire. On the days when consumers administered the questionnaire, the procedure for administration involved a different sequence of tasks. Staff continued to screen clients according to the sampling criteria. They also informed clients of the study 53 and directed them to the conference room. The consumer-surveyors then introduced themselves to participants, introduced the study, provided participants with a questionnaire, and assisted them in the completion of the survey. Both staff and consumer-surveyors received instruction in the administration of questionnaires. Instruction focused primarily on the importance of maintaining a neutral stance during the administration process. Completion of the questionnaire took approximately 15 to 20 minutes. Participants were informed that by completing the questionnaire they were consenting to participate in the study. Confidentiality was ensured as no identifying information was collected and all questionnaires were deposited, by participants, into a sealed box. Data analysis Mean satisfaction scores for the two groups were obtained by summing the scores of all responses in each section of the questionnaire and dividing by the number of questions answered. The t-test was used to examine differences in the mean satisfaction scores of the two surveyed groups. A significance level of .05 was used for this comparison. Multiple t-tests were used to compare individual scores. Because the use of multiple t-tests can capitalize on chance, the Bonferroni technique was used to compute a more conservative significance level (p<01) when individual t-tests were performed. 54 The qualitative data gathered on the experiences of the five consumer-researchers was assembled as raw case data and a case analysis was conducted. Subsequently, a cross-case pattern analysis was carried out in order to identify existing themes in the data (Patton, 1990). Observational data, collected throughout the research process, was also included in the results of the present study. 55 CHAPTER FOUR R E S U L T S Comparison of Consumer-Surveyed & Staff-Surveyed Participants surveyed by both staff and consumer-surveyors reported a high level of satisfaction with the adult services of the mental health team. There was no significant difference between the results of staff-administered and consumer-administered questionnaires. However, in 4 of the 5 sections the percentage of satisfaction is somewhat lower among consumer-surveyed participants than staff-surveyed participants. Variance between the five sections of the questionnaire is displayed in Figure 1. ) FIGURE 1 Percentage of Satisfaction 100 -Services Therapist Psychiatrist Effectiveness Respect | Staff-administered Q Consumer-administered 56 The proportion of respondents to select the " N / A " option was less than 10% for 27 of the 33 items in the questionnaire. The remaining 6 items, referring to various rehabilitation groups, missed appointments, additional resources, and information given to family or care-givers were not relevant to all participants. The proportion of " N / A " responses to these items ranged from 23 to 46%. A l l " N / A " responses were recorded as missing data in the subsequent analysis. Satisfaction with Services Both staff and consumer-surveyed groups reported fairly high levels of satisfaction with the availability of services and the information they received regarding their diagnosis and medication. Responses to this section of the questionnaire were skewed to the positive end of the scale, with the most frequent single response being "very satisfied" for each of the 11 items. A high percentage of respondents indicated satisfaction with the amount of time their therapist spent with them per appointment (91%) and with the number of appointments they had with their therapist (90%). The percentages of satisfied respondents were somewhat lower for the amount of time (77%) and number of appointments (72%) with psychiatrists. Seventy-five percent of respondents were satisfied with the hours the team was open. The percentage of respondents satisfied with the availability of consumer support groups, volunteer opportunities, and recreational groups 57 ranged from 60 to 70% with a high percentage of respondents choosing a neutral response (>20%) for these items. The mean satisfaction scores for the staff-surveyed group (x=4.0, SD=.6) and the consumer-surveyed group (x=4.0, 'SD=l.l) were not significantly different. Seventy-one percent of responses were positive within the staff-surveyed group while 75% were positive within the consumer-surveyed group. Participants did not respond differently to consumer-surveyors in comparison to staff-surveyors when questioned about their level of satisfaction with the availability of services and information received at the team. When levels of satisfaction with information regarding housing, financial aid, and other resources were assessed, the levels of satisfaction, although generally high, were skewed by the high percentage of " N / A " responses. The mean satisfaction scores for the staff-surveyed group (x=1.7, SD-.4) and consumer-surveyed group (x=1.8, SD=.4) were not significantly different. Many of the comments in this section indicated a high level of satisfaction with the availability of service and access to resources. The following comment captures many of the positive viewpoints expressed: I have been in treatment for 30 years. In my 6.5 years with the Kits Team, I have received more help and a better quality than ever before. I have learned many coping techniques. M y nurse is always available to talk with and my psychiatrist also makes herself available. I find the people that work at Kits Care Team to be compassionate, understanding and most 58 helpful from the secretaries through the workers through the doctors. I am most pleased with the service... Several respondents commented on the range of services available. As one respondent noted: "I find the combination of a consumer support group, therapist, and O.T. groups works effectively..." Recreational groups, home visits, the emergency line and Venture were also mentioned. One respondent noted that "The team is modern and up-to-date." Other respondents expressed mixed feelings about the service at the team: Having come to the team after seeing a private psychiatrist for 5 years I have mixed feelings about the team. I have felt uncomfortable that it seems the team's 'mission' is to maintain its clients. I do not want to maintain this state but to get better. The team is very satisfactory in ensuring I manage day-to-day living and for this I am grateful but I am worried that I am not always addressing my real problems and illness. There were numerous requests for information. For example, "I would like them to give me more information about housing, financial aid, legal aid and employment training." Requests for information regarding education programs and alternative services were also made. One respondent suggested that injections be available from opening till closing time on injection day. Opening during certain evenings and weekends was suggested by another respondent. Compatibility with Therapist High levels of satisfaction were reported by both staff-surveyed and consumer-surveyed groups with regard to their therapists. Responses to this 59 section of the questionnaire were strongly skewed to the positive end of the scale, with the most frequent single response being "always" satisfied for 7 of the 8 items. Greater than 90% of respondents agreed with their therapists' approach to treatment, found them helpful in dealing with day-to-day problems, felt they could trust their therapists, and felt their therapist understood and cared about them. A smaller percentage of respondents (81%) reported that they discussed the goals of their treatment with their therapist. The mean satisfaction scores for the staff-surveyed group (x=3.5, SD=.5) and the consumer-surveyed group (x=3.5, SD=.7) were not significantly different. Within the staff-surveyed group 95% of responses were positive while 92% were positive within the consumer-surveyed group. The majority of respondents commented positively about their level of satisfaction with their therapist. Many respondents noted that their therapist was accessible, supportive, caring, empathic, helpful and professional. The following comment is representative of many: I find my therapist very good. She gives helpful suggestions, she lets me talk as much as I need to. She's always available. She is kind-hearted. She has empathy. She listens and does not judge. She helps me with every aspect of my life - social, emotional, physical, mental. I find her to be a caring, supportive person. One respondent stated "I have problems with side effects from my meds that I feel haven't been fully addressed and this bothers me." Another respondent expressed difficulty in trying to change therapists: 60 I have first-hand experience at the moment of changing therapists... It is very difficult to even talk to the therapist about that and the process of making any move or even speaking up [has been] very belittling and not acknowledged as important. The focus always comes back to: The client is so 'sick'. Similarly, another respondent noted that the goal of treatment seemed to be "to maintain, but not so much to progress forward." Compatibility with Psychiatrist Assessment of consumers' level of satisfaction with their psychiatrists, revealed high levels of satisfaction in both participant groups. A l l responses were skewed to the positive end of the scale, with the most frequent response being "sometimes" satisfied for 3 of the 5 items and "always" satisfied for the remaining 2 items. Greater than 80% of respondents reported that they agreed with their psychiatrist about their diagnosis, felt they could trust their psychiatrist, and felt that their psychiatrist understood them. Twenty-eight percent of respondents reported that treatment options were not discussed with their psychiatrist. The mean satisfaction scores for the staff-surveyed group (x=3.2, SD=.6) and the consumer-surveyed group (x=3.1, SD=.7) were not significantly different. The percent of positive responses among the staff-surveyed group and the consumer-surveyed group were 85% and 83% respectively. Although the majority of comments indicated respondents were generally satisfied with their psychiatrists, comments varied significantly 61 representing a wide range of opinions from "I believe my psychiatrist is giving me the best care available" to "I sometimes feel I'm not being heard as an intelligent responsible adult. A t times I feel patronized." Many of the more positive comments are captured in the following comment: I'm very glad I have finally found a psychiatrist who I feel I can trust, who understands me, and who genuinely wants to help me. I have seen and met so many psychiatrists who I feel do not care or understand their patients and have them in and out of the office like a revolving door. I had lost all faith until I met my current psychiatrist at the Kitsilano Mental Health team. Several respondents stated that they needed more time with their psychiatrist. For example: It took me a little time to get used to the fact that I would not be seeing the psychiatrist very often at the team. He is very busy and only sees me for med reviews. During med reviews he is often called away.... I don't feel we spend enough time that we have a therapeutic bond. Two respondents disagreed with the diagnosis they had been given by their psychiatrist and others indicated they were experiencing difficulties with their medication, which had not been sufficiently addressed. Effectiveness of Service Participants surveyed by both staff and consumers, reported high levels of satisfaction with the effectiveness of services. Responses were strongly skewed to the positive end of the scale, with the most frequent single response being "definitely" satisfied for 3 of the 4 items. Ninety-62 three percent of respondents found the service at the team useful. A high percentage of respondents reported that the services had helped them with the difficulties that initially brought them to the team (96%) and had helped to improve their ability to cope with difficulties (87%). Twenty-five percent of respondents reported that the services had not helped to improve their sense of self-esteem. The mean satisfaction scores for the staff-surveyed group (x=3.5, SD=.5) and the consumer-surveyed group (x=3.3, SD=.6) were not significantly different. Ninety percent of responses were positive within the staff-surveyed group while 85% were positive within the consumer-surveyed group. Participants did not respond differently to consumer-surveyors in comparison to staff-surveyors when questioned about their level of satisfaction with the effectiveness of services. However, the trend toward lower levels of satisfaction among the consumer-surveyed group was most evident in this section of the questionnaire with a 5% difference in the mean satisfaction scores. See Table 1, page 65, for a comparison of the mean differences between staff-surveyed and consumer-surveyed groups. Generally, comments indicated a high level of satisfaction with the effectiveness of services at the team: I find the services very good. I see my therapist once a week and my psychiatrist as often as I need to. The secretaries are helpful, pleasant and kind. There is good back-up i f your therapist or psychiatrist are away. The recreational groups are 63 good. Without this care team, my therapist and psychiatrist -I would not be alive. Several respondents commented that they had experienced an improvement in their lives as a result of the team's service. For example: The services I get here at the team have helped me very much. I have improved greatly since coming to the Mental Health team. Where others could not help me, like my family doctor, other psychiatrists, Vancouver General Hospital, other doctors, the Kitsilano Mental Health team accepted me and helped me on the right track to getting back to a normal life. One respondent stated that the service enabled him or her to stay out of hospital. However, the following comments indicated some dissatisfaction with the team's service: the team is "overburdened" to the point where "errors" could be made; "...the team has helped me be functional in day-to-day living but ultimately I want to be more than just functional. I want to feel well."; "...at first I was not [satisfied] as I had 5 different therapists and just felt terrible having to repeat my stories all the time." Another respondent suggested that "the team would be better i f it had a psychologist." 64 T A B L E 1 C O M P A R I S O N O F M E A N D I F F E R E N C E S B E T W E E N S T A F F -S U R V E Y E D & C O N S U M E R - S U R V E Y E D G R O U P S Item Staff-Surveyed M SD n Consumer-Surveyed M SD n helped with difficulties 3.35 .71 32 3.32 .72 25 helped with coping 3.13 .76 32 2.90 .94 25 helped with self-esteem 3.56 .56 32 3.52 .59 25 service is useful 3.71 .53 32 3.32 .80 25 65 Respect High levels of satisfaction were reported by both staff and consumer-surveyed groups regarding the respect they received at the team. As above, responses were strongly skewed to the positive end of the scale, with the most frequent response being "always" satisfied for each of the 5 items. Extremely high percentages of satisfaction were reported with the level of respect respondents received at the team from the office staff (100%), therapists (98%), and psychiatrists (94%). Ninety-one percent of respondents were satisfied with the amount of time they had to wait in the waiting room for scheduled appointments and 92% felt the private information they gave to their therapist was kept confidential. The mean satisfaction scores for the staff-surveyed group (x=3.7, SD=.4) and the consumer-surveyed group (x=3.7, SD=.5) were not significantly different. The percentage of positive responses for the staff-surveyed and the consumer-surveyed groups were 96% and 94% respectively. When questioned about their level of satisfaction with the respect they receive at the team, participants did not respond differently to staff and consumer-surveyors. The majority of comments indicated that respondents were satisfied with the level of respect they encounter at the team. The following comment is representative of many: 66 I'm treated very well at the team and with a great deal of respect. I always get great service when I come in for appointments. With all the other doctors and psychiatrists I have seen in the past I have always felt like another number...in and out of the office like a revolving door, receiving no help. I feel the Kitsilano team actually cares about their patients unlike most others. Another respondent stated "I am treated here with more respect than I ever have been before. I feel here as though I am a person not just a case." There were some respondents who indicated they were less satisfied with the level of respect they encounter at the team. One respondent stated, "I have the feeling that some clients, who might have some concrete points, [are] seen as trouble makers or sick people instead of people with feelings, concerns and rights." Another respondent mentioned that they did not like having student doctors "...because they're not qualified doctors" and "...I value my privacy." Experiences of Consumers as Researchers The following issues were extracted from a written recording of the verbal input solicited from the consumer-researchers throughout the research process, and the evaluations completed prior to the dissemination of the research results: remuneration, empowerment, support, flexibility and personal impact. Remuneration Each consumer-researcher was paid an hourly rate of ten dollars an 67 hour. During one of the final meetings, the significance of being paid for one's work became a topic of discussion. Both Rob and Apr i l spoke of the personal benefit of receiving additional income. Zanna commented that the money had little to do with her involvement in the project, yet several other team members responded that remuneration for their work confirmed its importance, clearly demonstrating that it was recognized and valued within the organization. Empowerment Empowerment practice emphasizes the primacy of client participation in the process of defining one's problems and generating solutions and strives for mutuality between worker and client (Sohng, 1992). As stated earlier, each of the consumers took an active role in identifying the issues to be addressed in the questionnaire, administering the questionnaire to other consumers, analyzing both the qualitative and quantitative data, and disseminating the results along with their recommendations. As a facilitator and participant in this process it was my intention to remove myself from the decision-making process in an attempt to encourage team members to take ownership of the project. During the last few meetings, several participants stated that they would like to continue working as a team in order to broaden the study to all G . V . M . H . S . care teams. There were discussions as to how the team might obtain future funding for their work 68 i f they should continue and what their objectives would be. I feel this interest in continuing the work beyond the scope that I had initially envisioned is reflective of the group's willingness to take full ownership of the project. As one researcher stated, I leave the project with feelings of "empowerment, gratitude and joy and thinking that maybe we can pursue the idea of expanding the project." Several members openly expressed their feelings about the importance of the work did. They have attributed the value of their work to the fact that, as consumers, they are able to identify the issues most significant to individuals utilizing mental health services. Through discussion, participants also identified their right to maintain dignity and power in their relationships with mental health professionals. They began to recognize themselves as the experts of their own experience. John stated in his written evaluation of the project that "there was a respect for me here [at the team] as a person that I hadn't been aware of before. It took me out of the patient role." Support The issue of support is particularly significant to consumers working within mental health services. The stress that people generally experience with role change may result in a recurrence of symptoms for consumers (Sherman & Porter, 1991; Wilson et al., 1990; as cited in Morrell-Bellai & Boy dell, 1994). Jane White (1989), in a personal account of her experience 69 as a consumer on a planning committee, stated that professionals should be available for support, not treatment, and should allow the consumer to remain in control. Following the recommendations of Morrell-Bellai & Boy dell (1994), as a facilitator, I attempted to establish a safe environment in which the consumers could ask for both practical and emotional support. During our first meeting, I raised the issue of support and received a keen response. John and Apr i l both commented on the importance of providing mutual support within the group and other members expressed agreement. I stated that I could be contacted at home or at the team throughout the week. One member expressed relief that this was not strictly a "working group", that there was room for support and camaraderie within the working relationship. Discussing the issue of support seemed to bring the team members closer together and set the stage for a comfortable and productive working environment. Flexibility From my observations as facilitator in this project, I would add flexibility to the list of issues that are important to the planning and organizing of a participatory research project. Wilson, Mahler & Tanzman (1990) suggest that consumers may require specific accommodations for interruptions of their work schedule such as: the need for short and flexible working hours, paid mental health leave, or allowances for slower work or 70 simplified tasks as required (Morrell-Bellai & Boy dell, 1994). M y experience with this project supports this suggestion. Throughout the research process, individual members of the research team had various situations arise which prevented them from attending meetings. A flexible approach which provided team members with the opportunity to make up for lost hours by working at home seemed to work well. Consumers were able to maintain their share of the workload without jeopardizing their health and well-being. Personal Impact Two of the most prominent themes identified in the written evaluation of the project relate to the personal benefits of being involved in a participatory research project: increased self-esteem and a sense of camaraderie. Each of the five researchers noted that the opportunity to share their experiences and concerns had been beneficial. John expressed that the "camaraderie" among group members had been the most useful component of the project. Other team members indicated their involvement in the project had led to increased feelings of self-esteem. Emmy, Apr i l and John all noted that they had either discovered a personal ability that they had not previously recognized in themselves or had regained an ability they thought had been lost. One researcher wrote, "This project has helped boost my 71 self-esteem/confidence so much I was able to enter into several other projects ... That there are others like me - helped bring me out of [my] isolation and fear." As the current literature in this area indicates (Koplow, 1981; Pape, 1988; Wilson et al., 1990; as cited in Morrell-Bellai & Boy dell, 1994), most of the consumer-researchers reported increased self-esteem and felt they had learned something as a result of their participation in the project. 72 CHAPTER FIVE C O N C L U S I O N S & I M P L I C A T I O N S Comparison of Consumer and Staff-Surveyed Groups The involvement of mental health consumers as surveyors did not have a significant effect on the survey results. Contrary to the study conducted by Polowczyk et al. (1993), there was no significant difference between consumer-surveyed and staff-surveyed groups. Although the studies are similar in their design, there are two distinct deviations which may have contributed to the lack of a significant difference between the surveyed groups in the present study. First, the sample size obtained in the previous study by Polowczyk et al. (N=530) was considerably larger than that of the present study (N=57). As sample size affects t-test values, the trend observed in the present study of lower levels of satisfaction among the consumer-surveyed group may have reached statistical significance with a larger sample size. Second, therapists were involved in the initial recruitment of consumer-surveyed participants in the present study. This step was deemed necessary as a way of informing consumers that the study was taking place. However, this initial introduction may have been enough to contaminate the comparative design of the study. This limited role may have had an influence on the responses of the consumer-surveyed participants. Furthermore, due to a lack of experimental control, it is 73 unknown i f staff remained completely "neutral" in recruiting participants for the study or whether some degree of "encouragement" was used. In addition to the above limitations, the low response rate for the survey (31%) requires consideration. As noted by Lebow (1982), response rates for consumer satisfaction surveys are generally low and the self-selection process among respondents is a primary source of sampling bias. The sample for the present study was self-selected, therefore, it is unknown whether it is representative of the larger population of consumers utilizing the service. Past studies have indicated that the self-selected respondent group is likely to be more satisfied than the sample as a whole (Lebow, 1982). In the present study, it is possible that consumers utilizing several of the team's services were more likely to participate than consumers who were less connected with the team and possibly less satisfied with their treatment. However, this source of sampling bias, being constant for both the consumer and staff-surveyed groups, would not have affected the results of the comparison between them. Increasing consumer participation is a necessary step toward changing the current power structure which is pervasive throughout the mental health system. Participation at all levels of the system, from individual treatment plans to national planning and policy decision-making is essential to the empowerment of mental health consumers. With regard to agency research 74 and evaluation, participation throughout the entire research process is necessary to ensure greater equality between professional and consumer-researchers. The results of the present study indicate that the involvement of consumers in the administration of satisfaction surveys may not directly effect survey results; however, they do not diminish the importance of full consumer participation. In order for consumers to obtain real decision-making power and gain ownership of a project, it is important that this involvement span all phases of the research process. Although participation in the process of administering questionnaires may not be a key factor in increasing the validity of satisfaction surveys, it remains an important part of any participatory research project. Future research investigating the reliability and validity of consumer-developed survey instruments is needed in order to further substantiate the value of employing consumers as researchers. Few studies have been conducted on the reliability of consumer satisfaction surveys. Lebow (1982) identifies the lack of information about reliability as a substantial problem with consumer satisfaction research in general. Careful scale construction and evaluation is required for consumer-developed surveys to gain recognition as reliable research instruments. Lebow also states that there have been few attempts to validate the measures used in consumer satisfaction studies (1982). As noted earlier, Lebow (1982) maintains that 75 the terminology used in satisfaction surveys is imprecise. In order to help alleviate this problem, Lebow suggests that researchers must consider the kind of consumer, the length of treatment, and the type of treatment in assessing the meaning of responses to consumer surveys. Consumer-researchers, in carrying out this assessment, bring a high degree of sensitivity and awareness to the issues at hand. The contribution of mental health consumers in the process of developing survey instruments and analyzing data may help to improve the reliability and validity of consumer satisfaction measures. Further research is needed to investigate these possibilities. The Experiences of Consumers as Researchers The planning and organizing of participatory research projects requires careful attention to numerous issues including: remuneration, empowerment, support, and flexibility. Adequate pay and reimbursement of expenses is. essential to projects involving mental health consumers as researchers. Without it, the work of consumers is exploited and the oppressive features of the mental health system are sustained. Empowerment is a process which seeks to establish more equitable relationships between professionals and consumers. Even when consumers are paid for their involvement, the experience can be very disempowering i f they are not viewed as equals by their professional colleagues. Support 76 is critical to maintaining a healthy and productive work environment, particularly for consumers. Flexibility is similarly important. The need for flexibility requires that professionals be will ing to consider the personal as well as work-related needs of consumers and to accommodate these needs whenever possible. When careful consideration is given to these issues during the planning stages of a project, one increases the probability that the experience wi l l be a positive one for all those involved. Unfortunately, consumer participation in and of itself does not guarantee that the experience wi l l be of benefit to the consumers involved (Morrell-Bellai & Boydell, 1994). It is essential that the potential needs of consumers be considered prior to the implementation of a project and that continuous opportunities for reflection and evaluation be built into the project design. The above conclusions support many of the findings reported by Morrell-Bellai and Boydell (1994). The findings of the present study also confirm the assertion made by these authors that consumers experience many personal benefits as a result of their experience as researchers. The feedback obtained from the five consumer-researchers involved in the present study indicates that upon completion of the project they felt "empowered" and had gained a "sense of accomplishment." Several team members stated that they would miss the team meetings and hoped that they 77 would be able to continue working together on future projects. Other benefits noted by the researchers include camaraderie, financial reward, development of research skills, and increased self-esteem. Although the design of the study was intended to examine the effect of consumer-participation on the process of administering consumer satisfaction surveys, each of the researchers agreed that this had not been the most critical phase of their involvement. A l l of the consumer researchers expressed that their participation in the development of the questionnaire and their input into the analysis of the data had been their most useful contribution. These particular phases of the research process appear to most fully utilize the expertise of consumers; their experiential knowledge of mental illness and mental health services. The present study can be evaluated to determine the extent to which the principles of participatory research were followed. The research team in the present study participated in the development and administration of the questionnaire, the analysis of the data, and the dissemination of the research results. However, the team did not have the opportunity to define the specific problem area or contribute to the design of the study. These initial stages are fundamental to participatory research as they help bring the issues of greatest importance to consumers to the forefront of the research agenda. Additionally, the link between research and action, which is also 78 fundamental to participatory research, is more likely to be accomplished when the people most directly affected by a problem are the ones to define the research question. This link is of primary importance as it leads to the attainment of concrete benefits for consumers. Although the present study did not incorporate. all of the principles of participatory research, much value exists in the information documenting the involvement of consumers throughout several phases of the research process. Identifying issues relating to the specific needs of consumer-researchers is particularly important to the development of future participatory research projects in the field of mental health. Overall Levels of Satisfaction The overall results of the study, presented to agency staff and administration, suggest that the consumers of Kitsilano Mental Health Team are most satisfied with the respect they encounter at the team, the treatment approach of their therapists, and the effectiveness of the help they have received with the difficulties that initially brought them to the team. Consumers are most dissatisfied with the information they receive from the team about alternative treatment options, the side-effects of their medication, the condition with which they were diagnosed, and the information given to family and caregivers about their diagnosis. Results also indicate that there is some dissatisfaction with the effect of services on consumers' level of 79 self-esteem. This finding may be linked to one of the prominent themes identified in the analysis of the respondents comments: dissatisfaction with the team's focus on maintaining as opposed to improving the mental health of consumers. Based on these findings, the following recommendations were formulated and presented to agency staff: 1. To increase the availability of information regarding diagnoses, medication, and the range of services available to consumers and their family or caregivers. 2. To maintain a client-centered approach to treatment which emphasizes wellness over illness, strengths over deficits, and goal planning as well as treatment planning. Members of the Kitsilano Mental Health Team were very receptive to the conclusions and recommendations presented by myself and Rob, one of the consumer-researchers. Several members of the team expressed that the results of the survey affirmed some of their own thoughts and concerns about the services provided by the team. Team members also openly acknowledged the need to maintain a focus on client-defined goals, expressing that it is sometimes difficult not to place their own expectations (and limitations) upon their clients. The openness and honesty expressed during this discussion indicates that the findings provided a useful and provoking form of service evaluation. 80 Summary Social transformation is essential to a vision of consumer empowerment. The bureaucracy, politics and power imbalances inherent in the organizational structure of today's mental health system must be transformed in order for egalitarian relationships to be established among service providers and consumers. Participatory research is not a solution to consumer oppression, however, it does represent a step toward greater equality. The growth of consumer participation has contributed toward the deconstruction of the ideology of service provider as "expert". If consumers are to continue to gain power within the mental health system, service providers must recognize the ability and determination of consumers to exercise varying degrees of control over the process governing their care. 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What ideas would you suggest for improvement? 87 A P P E N D I X F Survey Instrument Consumer Satisfaction with Kitsilano Mental Health Team The purpose of this study is to determine the level of satisfaction among consumers receiving service from Kitsilano Mental Health Team. Your satisfaction with the service as a whole wil l be measured as well as your satisfaction with your therapist and your psychiatrist. Your satisfaction with the effectiveness of service and the level of respect shown by team staff wil l also be measured. In order to ensure confidentiality, you are not required to attach your name to any of the forms. Section A : Satisfaction with Services This section is about your level of satisfaction with the service provided by Kitsilano Mental Health Team. For each question, circle the number on the scale that best reflects your level of satisfaction. 1. How satisfied are you with the amount of time your therapist spends with you per appointment? 1 2 3 4 5 N/A very somewhat neutral somewhat very not applicable dissatisfied dissatisfied satisfied satisfied no opinion 2. How satisfied are you with the amount of time your psychiatrist spends with you per appointment? 1 2 3 4 5 N/A very somewhat neutral somewhat very not applicable dissatisfied dissatisfied satisfied satisfied no opinion 3. How satisfied are you with the number of appointments you have with your therapist? 1 2 3 4 5 N/A very somewhat neutral somewhat very not applicable dissatisfied dissatisfied satisfied satisfied no opinion 4. How satisfied are you with the number of appointments you have with your psychiatrist? 1 2 3 4 5 N/A very somewhat neutral somewhat very not applicable dissatisfied dissatisfied satisfied satisfied no opinion 91 5. How satisfied are you with the hours the service is open? 1 2 3 4 5 N/A very somewhat neutral somewhat very not applicable dissatisfied dissatisfied satisfied satisfied no opinion 6. How satisfied are you with the availability of consumer support groups at the team? 1 2 3 4 5 N/A very somewhat neutral somewhat very not applicable dissatisfied dissatisfied satisfied satisfied no opinion 7. How satisfied are you with the availability of volunteer opportunities at the team? 1 2 3 4 5 N/A very somewhat neutral somewhat very not applicable dissatisfied dissatisfied satisfied satisfied no opinion 8. How satisfied are you with the availability of recreational groups at the team? 1 2 3 4 5 N/A very somewhat neutral somewhat very not applicable dissatisfied dissatisfied satisfied satisfied no opinion 9. How satisfied are you with the information, you receive from the team about the side effects of your medication? 1 2 3 4 5 N/A very somewhat neutral somewhat very not applicable dissatisfied dissatisfied satisfied satisfied no opinion 10. How satisfied are you with the information you receive from the team about the condition you were diagnosed with? 1 2 3 4 5 N/A very somewhat neutral somewhat very not applicable dissatisfied dissatisfied satisfied satisfied no opinion 11. How satisfied are you with the information given to your family or care-givers by the team about the condition you were diagnosed with? 1 2 3 4 5 N/A very somewhat neutral somewhat very not applicable dissatisfied dissatisfied satisfied satisfied no opinion 92 12. Put a check mark in the box that best reflects how satisfied you are with the amount of information you have received from the team regarding: Satisfied Dissatisfied Not Applicable No Opinion a) housing? • • • b) financial aid? • • • c) legal aid? • • • d) employment opportunities? • • • e) employment training? • • • f) alternative community services? • • • Please comment on your level of satisfaction with the team's service: Section B : Compatibility with Therapist (case manager) This section is about your level of satisfaction with your therapist. For each question, circle the number on the scale that best reflects your level of satisfaction. 13. Do you agree with your therapist's approach to treatment? 1 2 3 4 N/A No, No, Yes, Yes, Not appbcable never not usually sometimes always no opinion 93 14. Do you and your therapist discuss what the goals of your treatment should be? 1 2 3 4 N/A No, No, Yes, Yes, Not applicable never not usually sometimes always no opinion 15. Is your therapist helpful in dealing with day-to-day problems? 1 2 3 4 N/A No, No, Yes, Yes, Not applicable never not usually sometimes always no opinion 16. Does your therapist call you when you have missed an appointment? 1 2 3 4 N/A No, No, Yes, Yes, Not applicable never not usually sometimes always no opinion 17. Do you feel your therapist understands you? 1 2 3 4 N/A No, No, Yes, Yes, Not applicable never not usually sometimes always no opinion 18. Do you feel your therapist cares about you? 1 2 3 4 N/A No, No, Yes, Yes, Not applicable never not usually sometimes always no opinion 19. Do you feel you can trust your therapist? 1 2 3 4 N/A No, No, Yes, Yes, Not applicable never not usually sometimes always no opinion 20. Do you feel you get along well with your therapist? 1 2 3 4 N/A No, No, Yes, Yes, Not applicable never not usually sometimes always no opinion Please comment on your level of satisfaction with your therapist: 94 Section C - Compatibility with Psychiatrist This section is about your level of satisfaction with your psychiatrist. For each question, circle the number on the scale that best reflects your level of satisfaction. 21. Do you and your psychiatrist discuss options with regard to treatment? 1 2 3 4 N/A No, No , Yes, never not usual ly sometimes Yes , always No t applicable no opinion 22. Do you feel your psychiatrist understands you? 1 2 3 4 N/A No, No , Yes, never not usual ly sometimes Yes , always No t applicable no opinion 23. Do you feel you can trust your psychiatrist? 1 2 3 4 N/A No, No , Yes, never not usual ly sometimes Yes , always No t appbcable no opinion 24. Do you feel you get along well with your psychiatrist? 1 2 3 4 N/A No, No , Yes, never not usual ly sometimes Yes, always Not applicable no opinion 25. Do you and your psychiatrist agree on your diagnosis? 1 2 3 4 N/A No, definitely not No , not real ly Yes, generally Yes, definitely No t appttcable no opinion Please comment on your level of satisfaction with your psychiatrist: 95 Section D - Effectiveness of Service This section is about your level of satisfaction with the effectiveness of services at the team. For each question, circle the number on the scale that best reflects your level of satisfaction. 26. Have the services helped you with the difficulties that brought you here? 1 2 3 4 N/A No, definitely not No, not really Yes, generally Yes, definitely Not applicable no opinion 27. Have the services helped you to improve the way you cope with difficulties now? 1 2 3 4 N/A No, definitely not No, not really Yes, generally Yes, definitely Not applicable no opinion 28. Have the services helped to improve your level of self-esteem? 1 2 3 4 N/A No, definitely not No, not really Yes, generally Yes, definitely Not applicable no opinion 29. Do you find the service you receive useful? 1 2 3 4 N/A No, definitely not No, not really Yes, generally Yes, definitely Not applicable no opinion Please comment on your level of satisfaction with the effectiveness of the services at the team: 96 Section E - Respect This section is about your level of satisfaction with the respect shown to you by the staff working at the team. For each question, circle the number on the scale that best reflects your level of satisfaction. 30. Are you satisfied with the amount of time you have to wait in the waiting area for scheduled appointments? 1 2 3 4 N/A No, No, Yes, never not usually sometimes Yes, always Not applicable no opinion 31. Are you treated with respect by your therapist? 1 2 3 4 N/A No, No, Yes, never not usually sometimes Yes, always Not appncable no opinion 32. Are you treated courteously by the office staff? 1 2 3 4 N/A No, No, Yes, never not usually sometimes Yes, always Not applicable no opinion 33. Are you treated with respect by your psychiatrist? 1 2 3 4 N/A No, No, Yes, never not usually sometimes Yes, always Not applicable no opinion 34. Do you feel the private information you give to your therapist wil l be kept confidential? 1 2 3 4 N/A No, No, Yes, never not usually sometimes Yes, always Not applicable no opinion Please comment on your level of satisfaction with the respect you receive as a consumer here: cflicmfe QJou cro/t QJouft cTiwe and SJJoftt! 97 

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