Joanna Ochocka

Nothing about me, without me: participatory action research with self-help/mutual aid organizations for psychiatric consumer/survivors.

Participatory action research with self-help/mutual aid organizations for psychiatric consumer/survivors is reviewed. We begin by tracing the origins of and defining both participatory action research and self-help/mutual aid. In so doing, the degree of correspondence between the assumptions/values of participatory action research and those of self-help/mutual aid for psychiatric consumer/survivors is examined. We argue that participatory action research and self-help/mutual aid share four values in common: (a) empowerment, (b) supportive relationships, (c) social change, and (d) learning as an ongoing process. Next, selected examples of participatory action research with psychiatric consumer/survivor-controlled self-help/mutual aid organizations which illustrate these shared values are provided. We conclude with recommendations of how the key values can be promoted in both the methodological and substantive aspects of future participatory action research with self-help/mutual aid organizations for psychiatric consumer/survivors.

Shifting the paradigm in community mental health : towards empowerment and community

This ground-breaking study examines changes in the values and related practices within community mental health that occurred between 1984 and 1998. During this period, a distinct shift in policy coincided with a new emphasis on mental health reform. Consumer/survivors and other mental health claims-makers played an active role in shaping mental health policy during this time and influenced the trend of consumer/survivor and family participation and empowerment in the policy and planning process. This unique two-and-a-half year study examined one community in depth by looking at the changes that occurred for individuals, organisations, and policy. While the three organizations under study followed their own unique path toward change, the authors contend that there were also common elements in the journey toward the .empowerment community-integration. paradigm. Central to this shift was the emphasis on building an organization based on consensually defined values and a vision for the future. Shifting The Paradigm in Community Mental Health is itself a valuable guide for future research and for the consumers and administrators within the mental health community as well as in other areas of human services. This is an important guide for anyone interested in innovation and social change.

Moving forward: negotiating self and external circumstances in recovery.

This article presents a framework for understanding the concept of recovery from serious mental illnesses and other life struggles. The framework is based on findings from a longitudinal, qualitative study that involved in-depth interviews with 28 people who experienced serious mental health challenges. The purpose of this article is to clarify the concept of recovery by presenting a grounded theory analysis of the components of recovery. The framework recognizes the experiences of struggle constructed through the words of study participants and captures four main components of recovery: a) a drive to move forward, b) a spiral of positive and negative changes, c) the context of recovery, and d) a dialectical process of ongoing negotiation between self and external circumstances.

Developing Theory From Complexity: Reflections on a Collaborative Mixed Method Participatory Action Research Study

Research studies are increasingly complex: They draw on multiple methods to gather data, generate both qualitative and quantitative data, and frequently represent the perspectives of more than one stakeholder. The teams that generate them are increasingly multidisciplinary. A commitment to engaging community members in the research process often adds a further layer of complexity. How to approach a synthesizing analysis of these multiple and varied data sources with a large research team requires considerable reflection and dialogue. In this article, we outline the strategies used by one multidisciplinary team committed to a participatory action research (PAR) approach and engaged in a mixed method program of research to synthesize the findings from four subprojects into a conceptual framework that could guide practice in community mental health organizations. We also summarize factors that hold promise for increasing productivity when managing complex research projects.

Immigrant Parenting: A New Framework of Understanding

ABSTRACT This article presents a new orienting framework for understanding immigrant parenting. The framework was developed and tested through a qualitative research study that involved 50 focus group interviews with immigrant parents who have resided in Canada for less than 3 years. The article begins by reviewing the existing parenting models found in academic literature and noting the limitations of these models. Next it describes the components of our constructed framework for understanding immigrant parenting. The article ends with the presentation of research results based on a large focus group data with 317 newcomer parents to Canada.

Taking culture seriously: ethnolinguistic community perspectives on mental health.

OBJECTIVE Ethnolinguistic communities are underserved by mental health systems in immigrant-receiving, multicultural societies, but their perspectives are seldom elicited in mental health research or reform planning. This article helps fill this gap by presenting community perspectives on concepts of mental health, mental illness and mental health experiences with five ethnocultural communities (Latin American, Mandarin-speaking Chinese, Polish, Punjabi Sikh and Somali) in Ontario, Canada. METHODS Data were collected from 21 focus groups as part of a large-scale, participatory action research project called Taking Culture Seriously in Community Mental Health. RESULTS The analysis focuses on how mental health and mental illnesses are described, how mental health care is experienced and what recommendations community members provide to improve the mental health system. CONCLUSIONS Study findings illustrate the importance of the social context of immigration and settlement in conceptualizing mental health and mental distress. We conclude that systemic changes are needed to formulate collaborative, community-based strategies for mental health promotion and interventions.

From social liminality to cultural negotiation: Transformative processes in immigrant mental wellbeing

The underlying psychosocial processes that produce immigrant mental wellbeing are understudied in anthropology and medicine. This paper provides insights into these processes by describing culturally diverse immigrants’ perceptions of mental health and adaptation strategies. Qualitative data were collected from 21 focus groups as part of a large, multidisciplinary, participatory action research project about mental health with five ethnolinguistic groups (Mandarin-speaking Chinese, Polish, Punjabi Sikh, Somali and Spanish-speaking Latin American) in Ontario, Canada. In framing the analysis, transformative concepts are applied to address dimensions of power and culture – social liminality and cultural negotiation – to the ongoing psychosocial processes of coping with mental distress. ‘Social liminality’ describes how immigrants perceive themselves to be in a psychologically stressful, transitional state, whereas ‘cultural negotiation’ describes how they actively cope with cultural tensions and respond to mental health challenges. Study findings show that while social liminality and cultural negotiation are stressful, they also have the potential to help individuals adapt by producing a positive synthesis of ideas about mental health in new social and cultural contexts. The study contributes to the shift from problem identification using a biomedical model of mental illness to a more psychosocial and ecological approach that reveals the potential for resolving some mental health problems experienced in immigrant communities. Describing active psychosocial process of adaptation also reinforces the therapeutic and educational value of partnerships between practitioners and clients and immigrant communities and mental health systems.

Putting Values into Practice: Public Policy and the Future of Mental Health Consumer-run Organizations

The purpose of the paper is to reflect on value dilemmas in mental health consumer-run organizations and to discuss implications for research, policy, and practice. We review the roots of consumer-run organizations in the self-help movement and the psychiatric survivor liberation movement, focusing on the distinctive values espoused by consumer-run organizations. We also discuss evidence-based and value-based approaches to mental health policy formulation and mental health reform, noting the particular importance of value-based approaches and the role that consumer-run organizations can play in mental health reform. Based on our experiences conducting a participatory action research study of four mental health consumer-run organizations, we identify and examine several value dilemmas, discuss the lessons that we learned about these value dilemmas, and note their implications for future directions in research, policy, and practice

Who uses consumer-run self-help organizations?

A multisite evaluation of community mental health services is used to answer two questions: (a) How do diagnosis, functioning, and self-assessments of consumer/survivor initiative (CSI) and assertive community treatment (ACT) participants compare?, and (b) What other supports/services are CSI and ACT participants using? The sample is from an Ontario evaluation of consumer/survivor peer initiatives in four communities (n=73). The reference group is new (n=48) and ongoing (n=134) clients of four ACT teams. Self-help organizations are serving a broader population of individuals who include a significant subgroup of persons with severe mental illness along with others with a mixed picture of higher functioning and greater instability. There is little overlap in the use of these modes of service delivery, which suggests that maintaining options within systems of care is critical to ensuring coverage and access for the broader population.

Building a community-based culture of evaluation

In this article we argue for a community-based approach as a means of promoting a culture of evaluation. We do this by linking two bodies of knowledge - the 70-year theoretical tradition of community-based research and the trans-discipline of program evaluation - that are seldom intersected within the evaluation capacity building literature. We use the three hallmarks of a community-based research approach (community-determined; equitable participation; action and change) as a conceptual lens to reflect on a case example of an evaluation capacity building program led by the Ontario Brian Institute. This program involved two community-based groups (Epilepsy Southwestern Ontarioand the South West Alzheimer Society Alliance) who were supported by evaluators from the Centre for Community Based Research to conduct their own internal evaluation. The article provides an overview of a community-based research approach and its link to evaluation. It then describes the featured evaluation capacity building initiative, including reflections by the participating organizations themselves. We end by discussing lessons learned and their implications for future evaluation capacity building. Our main argument is that organizations that strive towards a community-based approach to evaluation are well placed to build and sustain a culture of evaluation.