Ethnocultural variations in mental illness discourse: some implications for building therapeutic alliances

OBJECTIVE: In the delivery of mental health services over the past decade, the field has attempted to shift from paternalism to client-centered care, in which treatment and recovery are based on client-practitioner collaboration. Such a shift requires that providers elicit and work with clients' discursive accounts of their illness experiences and understand these accounts in the context of clients' ethnocultural backgrounds. The purpose of this ethnography was to elucidate ethnocultural aspects of illness accounts and interactions with the mental health system. METHODS: Over 18 months, 25 ethnically diverse, unemployed, inner-city residents with severe and long-term mental disorders participated in an ethnographic (participant observation) study of illness accounts and their relationship to sociocultural background. Field ethnographers shared in activities with participants at many of their regular haunts, engaging in observation, conversation, and informal interviewing in many real-world contexts and settings. RESULTS: The study revealed significant differences between the ways that European Americans, African Americans, and Puerto Rican Americans discursively constructed their illness experiences and their interactions with the mental health system. The clients' narratives of their illness experiences provided valuable information, which clinicians could use to open up topics for discussion, insert themselves into an engaging relationship with clients, and link clinical advice or guidance with the clients' own conceptions of how mental illness fits into their larger lived world. CONCLUSIONS: To develop a working therapeutic partnership with clients, mental health service providers must become aware through context-sensitive, context-informed dialog of the differences in how individual clients "en-story," communicate, and experience their illnesses.     

Client empowerment in psychiatry and the professional abuse of clients: where do we stand?

OBJECTIVE: There is a considerable imbalance of power in psychiatry that sits in favor of professionals. The abuse and discrimination of the mentally ill are not just restricted to the mental health system but may also exist in the primary care sector. This article aims to evaluate the effects of power imbalance on discrimination and abuse of people with mental illness by professionals. METHODS: A literature search was carried out on MEDLINE using the key words consumerism, client empowerment, abuse, and mental illness. Publications of two leading British consumer organizations: MIND and the Sainsbury Centre for Mental Health were hand searched. Relevant cross-references from the papers reviewed were consulted. Studies with information on the reasons for power imbalance and prevalence of discrimination and abuse of clients were critically reviewed. Explanations are offered as to why abuse and discrimination of clients by professionals may still occur despite the onset of the client empowerment movement. RESULTS AND DISCUSSION: The available evidence suggests that reasons for abuse of mental health clients fall under two broad categories: 1) direction from the imbalance of power and 2) those pertinent to the nature of physical or sexual abuse. Different grades of client empowerment and ways of strengthening it are described. CONCLUSIONS: There appears to be a link between power imbalance and abuse of clients with mental illness by professionals in all health care sectors. Client empowerment may help rectify the power imbalance. Prospective studies are required to establish whether client empowerment can reduce discrimination and abuse of clients and whether abuse is a consequence of power imbalance. Recommendations for future studies are made.     

Shared decision-making preferences of people with severe mental illness

OBJECTIVE: Perceived roles and preferences were explored for shared decision making among persons with severe mental illnesses. METHODS: In this pilot study, 30 adult clients with severe mental illness in a community mental health center were surveyed about decision making regarding psychiatric medications, rehabilitation, and general medical care. RESULTS: Clients generally expressed a desire for greater participation in decisions about psychiatric care than they currently experienced. Regarding use of new psychiatric medications, 23 persons (77%) preferred autonomous or shared roles, but only 11 (37%) rated their current roles as more than passive (z=-2.83, p=.005). Clients were less likely to prefer a passive role in medication decisions about psychiatric care than about general medical care (seven persons, or 23%, versus 23 persons, or 77%; z=-3.01, p=.003). CONCLUSIONS: Most clients with severe mental illnesses prefer shared decision making, particularly in relation to their mental health care.     

Shared decision making in mental health: prospects for personalized medicine

This paper describes the shared decision-making model, reviews its current status in the mental health field, and discusses its potential impact on personalized medicine. Shared decision making denotes a structured process that encourages full participation by patient and provider. Current research shows that shared decision making can improve the participation of mental health patients and the quality of decisions in terms of knowledge and values. The impact of shared decision making on adherence, illness self-management, and health outcomes remains to be studied. Implementing shared decision making broadly will require re-engineering the flow of clinical care in routine practice settings and much greater use of information technology Similar changes will be needed to combine genomic and other biological data with patients'' values and preferences and with clinicians'' expertise. The future of personalized medicine is dearly linked with our ability to create the infrastructure and cultural receptivity to these changes.     

Outcomes for Rural Medicaid Clients with Severe Mental Illness in Fee for Service versus Managed Care

This study compared outcomes for rural Medicaid clients with severe mental illness in fee for service versus managed care programs. Interviews were conducted with 305 Medicaid clients in rural Oregon (166 in fee for service and 139 in managed care). Logistic and multivariate regression analyses were used to examine client satisfaction, safety, symptoms, functioning, and family satisfaction in the fee for service versus managed care groups. There was no evidence that conversion of the Medicaid mental health system from fee for service to managed care led to changes in outcomes for rural clients with severe mental illness.     

Promoting the value and practice of shared decision-making in mental health care

Active consumer participation is critical in contemporary mental health care and treatment planning and has been a staple of the field of psychiatric rehabilitation for the last three decades. Providing the opportunity for consumers to chose interventions that fit personal preferences and recovery increase the likelihood that these interventions will enhance personal meaning, satisfaction and quality of life (Improving the Quality of Health Care for Mental and Substance Use Conditions, 2006). Similarly, self-determination and shared decision-making are critical components of recovery. As stated in the President's New Freedom Commission on Mental Health Final Report, recovery from mental illnesses should be the expectation in mental health care with services and treatments that are consumer and family-driven. Mental health care should be planned and delivered to ensure that consumers and families with children with mental health problems receive real and meaningful choices about treatment options and providers. The purpose of this paper is to explore the value and use of shared decision-making in health and mental health care, briefly examine the advantages and disadvantages of shared decision making and propose next steps in advancing use of shared decision-making in mental health care.     

Racial Differences Among Supported Housing Clients in Outcomes and Therapeutic Relationships

This study examined racial differences between African American and White supported housing clients in clinical outcomes and in their relationships with their landlords, medical and mental health care providers, and religious faith. Housing, mental health, and substance abuse outcomes of 204 White clients and 269 Black clients participating in a national homeless initiative were examined, along with their ratings of their relationships with landlords, health care providers, and religious participation. There were no significant racial differences found on outcomes or on client ratings of the helpfulness of relationships with landlords and health care providers. However, Black participants reported significantly stronger religious faith and religious participation than White participants. Together, these results suggest the religious faith of Black clients should be appreciated as a potential asset in supported housing services and that efforts to maintain racial equality should be continued in the delivery of health services.     

A clients' perspective on demand-oriented and demand-driven health care

BACKGROUND: In many Western European countries, there is an increasing request for demand-oriented and demand-driven approaches in health care. In these approaches, the emphasis is on the clients' perspective on healthcare policy and healthcare services. A study was conducted to gain insight into the clients' view of health care. METHODS: In 2004 a survey was conducted in the Netherlands among 4250 ambulatory mental health clients, by means of a postal questionnaire. To include clients with different experiences of mental health care, the sample was stratified according to the length of the treatment history. A total of 865 clients responded to the survey. RESULTS: Elements that are found to be important to most clients are that 'needs are determined in consultation with the client', that 'the client is treated in a pleasant manner' and that 'the professional informs the client about the possibilities in his/her situation'. Significant differences were found between groups with different background factors: income, education, age, sex and treatment history all had significant correlations. CONCLUSION: Most clients in ambulatory mental health care appreciate the demand-oriented and demand-driven approaches. However, not all the elements are appreciated in the same manner. In general, clients do not seem to care much about who makes the decisions, but they care much more about the way the decision-making process is carried out. Clients especially value being heard and being involved in the process as a serious party.     

Advocacy: critical component in a comprehensive mental health system

Although rights protection and best interest perspectives are frequently viewed as diametric opposites, mental health advocacy is an important strategy in pursuit of both civil rights and therapeutic goals for people with mental illness. Independent, client-centered advocacy supports the attainment of consumer-identified goals for recovery, equality, and social inclusion and mitigates the negative consequences of stigma and discrimination. Advocacy strives to return decision-making authority to consumers and thus to empower them to play a more central role in their own care, treatment, rehabilitation, and life choices.     

Financial capacity in persons with schizophrenia and serious mental illness: clinical and research ethics aspects

In contrast with issues of consent capacity, financial capacity has received surprisingly little clinical or ethical attention in the psychiatric literature. Issues of financial capacity emerge frequently regarding clients with serious mental illness (SMI), and their resolution has practical and ethical significance for clients, their families, and mental health professionals. These issues include whether a client has sufficient financial skills and judgment to live independently, whether a client requires a representative payee, and what goals for community reintegration should be established with a client. Similar to informed consent, issues of financial capacity raise ethical challenges for clinicians, caseworkers, and agencies. The present article addresses clinical and research ethics questions related to financial capacity in clients with schizophrenia and SMI. Clinical questions concern evaluation of financial capacity in clients with SMI, whether to seek assignment of a mandatory representative payee, whether to leverage treatment compliance through a representative payee arrangement, and whether a mental health professional should also serve as a client's representative payee. The research ethics question addresses implications of providing financial compensation for research participation to individuals with SMI and limited financial capacity and means. The ultimate goal of this article is to focus clinical and ethical attention on a neglected decisional capacity in SMI that is of fundamental importance for clients, families, clinicians, and researchers.     

Models of User Involvement in the Mental Health Context: Intentions and Implementation Challenges

Patient-centered care, shared decision-making, patient participation and the recovery model are models of care which incorporate user involvement and patients’ perspectives on their treatment and care. The aims of this paper are to examine these different care models and their association with user involvement in the mental health context and discuss some of the challenges associated with their implementation. The sources used are health policy documents and published literature and research on patient-centered care, shared decision-making, patient participation and recovery. The policy documents advocate that mental health services should be oriented towards patients’ or users’ needs, participation and involvement. These policies also emphasize recovery and integration of people with mental disorders in the community. However, these collaborative care models have generally been subject to limited empirical research about effectiveness. There are also challenges to implementation of the models in inpatient care. What evidence there is indicates tensions between patients’ and providers’ perspectives on treatment and care. There are issues related to risk and the person’s capacity for user involvement, and concerns about what role patients themselves wish to play in decision-making. Lack of competence and awareness among providers are further issues. Further work on training, evaluation and implementation is needed to ensure that inpatient mental health services are adapting user oriented care models at all levels of services.     

Negotiating the boundaries between clinical and non-clinical work within a supported housing program

Many contemporary mental health care programs rely on cross-agency models of service delivery. In these models, staff from different organizations provide care for the same clients, and this requires negotiation around role boundaries. In Australia, cross-agency programs have been developed to promote collaboration between government and not-for-profit community groups to meet the needs of those with serious mental health problems. Policy makers need to be aware of how staff in these roles conceptualize the boundaries and interconnection of their work with others to ensure that program goals are achieved. This study examined the division of labor that emerged between support workers (employed by the not-for-profit sector) and government health workers within a cross agency supported housing program for people with serious mental illness at risk of homelessness and self-neglect. Interviews were conducted with 40 government health workers and 37 staff from non-government agencies that shared clients in a supported housing program. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis. While the division between clinical and non-clinical work was accepted and co-produced, tensions arose in defining the boundaries between them. These tensions resulted from poor communication on the part of both groups, perceived lack of clinical intervention by case managers, high caseloads of case managers, role ambiguity, and support workers feeling their input and feedback were not valued by government health workers. Divisions of labor in cross-agency programs need to be critically evaluated to assess whether they serve program goals. Tensions are inevitable when dividing the tasks involved in care of a single client between different organizations. Co-location of multidisciplinary teams that include health professionals, support workers and peer workers may lead to more effective recovery oriented care. The findings have implications for the future development of recovery oriented mental health services.     

Community care: exploring the priorities of clients, mental health professionals and community providers

Co-ordinated joint service planning by all stakeholders is widely accepted as a valuable principle in the development of community support services for persons with severe mental illness. Even so, relatively little is known of the views and priorities of the different parties with regard to the elements that should make up the care and support system. This paper reports on a Dutch study in which clients, mental health care workers and community service professionals offered their opinions on what constitutes a support system that enables individuals with long-term mental illness to participate in the community. The results show that the respondents regarded a stable base as an essential prerequisite for the realisation of this objective. Within this general consensus, the clients stressed the importance of advocacy and sheltered meeting places; the mental health professionals emphasised the rehabilitative elements and the representatives of the generic community services felt that the key components in any such system were crisis intervention services and co-ordination at client and system level.     

Evaluating mental health care reform: including the clinician, client, and family perspective

This article suggests one direction that theory building might take to develop a stronger conceptual foundation needed to test the effect on clients of reforms in the financing and organization of mental health care delivery systems. The authors recommend that health status outcomes be measured from three perspectives: the client, who can best report his or her own subjective experience of illness; the clinician, who is the best source of information about the client's disease; and the family, which is the best source of information about the effects on members' health status of caring for a mentally ill family member. The authors also recommend that measurement of health status should be multidimensional.     

The goals of psychiatric rehabilitation: an ethical analysis

This study addressed the question under what conditions ought client-centered psychiatric rehabilitation work towards goals set by its clients. This was done by means of an ethical analysis of goal setting in psychiatric rehabilitation, using standard ethical principles of health care and a case study for illustration. The analysis demonstrated that client-centered psychiatric rehabilitation ought to work towards goals set by its clients under the conditions that they not involve serious danger and are not induced by severe mental impairment. When these conditions are not fulfilled, it may be most helpful to engage the clients in critical dialogue so as to reach an agreement regarding the setting of goals for their psychiatric rehabilitation. Special ways of engaging clients with severe mental impairments in such dialogue may have to be explored.     

The Trauma Recovery Group: A Cognitive-Behavioral Program for Post-Traumatic Stress Disorder in Persons with Severe Mental Illness

To address the problem of post-traumatic stress disorder (PTSD) in severe mental illness, the Trauma Recovery Group, a mixed gender cognitive-behavioral program, was developed and piloted at a community mental health center. The 21-week program includes breathing retraining, education about PTSD, cognitive restructuring, coping with symptoms, and making a recovery plan. Eighty clients were assessed at baseline and 41 provided follow-up data. Retention in the group was good: 59%. Treatment completers improved significantly in PTSD symptoms and diagnosis, depression, and post-traumatic cognitions, but dropouts did not. The results support the feasibility of the program and suggest it produces clinical benefits. Kim T. Mueser and Elisa Bolton are affiliated with the Department of Psychiatry, Dartmouth Medical School, New Hampshire-Dartmouth Psychiatric Research Center, 105 Pleasant St., Concord, NH, 03301, USA. Patricia C. Carty, Michael J.Bradley, Kimberly F. Ahlgren, Diane R. DiStaso, Andrew Gilbride, Carol Liddell are affiliated with The Mental Health Center of Greater Manchester, Manchester, NH, USA     

Use of a Computerized Medication Shared Decision Making Tool in Community Mental Health Settings: Impact on Psychotropic Medication Adherence

Healthcare reform emphasizes patient-centered care and shared decision-making. This study examined the impact on psychotropic adherence of a decision support center and computerized tool designed to empower and activate consumers prior to an outpatient medication management visit. Administrative data were used to identify 1,122 Medicaid-enrolled adults receiving psychotropic medication from community mental health centers over a two-year period from community mental health centers. Multivariate linear regression models were used to examine if tool users had higher rates of 180-day medication adherence than non-users. Older clients, Caucasian clients, those without recent hospitalizations, and those who were Medicaid-eligible due to disability had higher rates of 180-day medication adherence. After controlling for sociodemographics, clinical characteristics, baseline adherence, and secular changes over time, using the computerized tool did not affect adherence to psychotropic medications. The computerized decision tool did not affect medication adherence among clients in outpatient mental health clinics. Additional research should clarify the impact of decision-making tools on other important outcomes such as engagement, patient-prescriber communication, quality of care, self-management, and long-term clinical and functional outcomes.     

Statewide dissemination of the training in community living program

Conclusion Wisconsin, Delaware, and Rhode Island have found the TCL approach to providing community support services to be effective in retaining the more severely ill of clients in ongoing community care and, consequently, in reducing their utilization of psychiatric hospital services. Tying standards regulating the staffing (credentials and intensity); productivity (direct client hours); organization (team structure and process); and operation (assertive outreach, treatment, rehabilitation, and support) to financing has worked well in disseminating the TCL model in these three states. Each state has experienced greater stability in their overall mental health systems as the number of certified programs and clients served have increased.Despite its demonstrable benefit to persons with severe mental illness, TCL program growth on a national scale has been slow. The self-interest of established community mental health systems and the substantial per client cost of TCL programs represent real challenges to interested state mental health agencies. However, the availability and flexibility of Medicaid financing for TCL services and the potential of TCL to reduce problems of homelessness and state hospital overcrowding are compelling reasons for state mental health agencies to consider adopting the approach.The authors are grateful to the following individuals who contributed information about the states described in this article: William Knoedler, M.D., Deborah Allness, Sheldon Gross, Elaine Carpenter, Harris Taylor, and Maurice Tippett.     

Recovery from severe mental illness: an intrapersonal and functional outcome definition

To promote research and improved clinical practice, three criteria are proposed to define recovery from severe mental illness: hope, self-responsibility and 'getting on with life' beyond illness. Each of these criteria can be measured at the intrapsychic-subjective, interpersonal-behavioral,and environmental levels.The criteria were identified through cumulative experiences of a decade of clinical services research at the New Hampshire-Dartmouth Psychiatric Research Center, contributions from consumers and family advocates, and focus groups. Measures of each criterion are proposed through the use of extant assessment instruments such as the Beck Hopelessness Scale, Locus of Control Questionnaire, instrumental and social role functioning scales,and subjective ratings of quality of life. Collateral sources of information are required to assure that the measures of the criteria for recovery are reliable, accurate and valid. The criteria selected to define recovery have already instigated the use of a broad array of tools to assess the course and outcome of schizophrenia in research and clinical practice. Concentrating on the importance of self-responsibility as a criterion should have the spin-off benefit of encouraging psychiatrists to more actively involve their clients in a collaborative enterprise for pharmacotherapy, including education in disease management and shared decision-making. To promote recovery using the three component definition will require rehabilitation practitioners to provide services that should facilitate clients managing and directing their own lives with greater autonomy. Services that enable clients to develop the social and independent living skills needed for community reintegration will engender hope, self-responsibility, and the development of a functional person who has recovered from a disabling mental disorder. Operationalizing recovery should accelerate hypothesis-testing research on this construct, including determining the attributes of treatment and rehabilitation services that are associated with optimal states of recovery.     

Use of a consumer-led intervention to improve provider competencies

OBJECTIVE: Client-centered care is a major aim of health care. In mental health, new client-centered treatment approaches that emphasize recovery, rehabilitation, and empowerment can improve outcomes for people with severe and persistent mental illness. However, these approaches are not widely used, in part because many clinicians lack the necessary competencies. The objective of this study was to evaluate the effectiveness of an innovative, consumer-led intervention, Staff Supporting Skills for Self-Help, which was designed to improve provider quality, empower mental health consumers, and promote mutual support. METHODS: The study was conducted at five large community mental health provider organizations in two western states. One organization in each state received the intervention. The intervention included education, clinician-client dialogues, ongoing technical assistance, and support of self-help. It focused on client-centered care, rehabilitation, and recovery. A one-year controlled trial evaluated the effect of the intervention on clinicians' competencies, care processes, and the formation of mutual support groups. Outcomes were assessed by using competency assessment survey instruments and semistructured interviews with clinicians and managers. RESULTS: A total of 269 clinicians participated in the study: 151 in the intervention group and 118 in the control group. Compared with clinicians at the control organizations, clinicians at intervention organizations showed significantly greater improvement in education about care, rehabilitation methods, natural supports, holistic approaches, teamwork, overall competency, and recovery orientation. CONCLUSIONS: A feasible, consumer-led intervention improves provider competencies in domains that are necessary for the provision of high-quality care.