Supporting the sustainability of Mad Studies and preventing its co-option

Mad Studies is emerging as a new force in ‘mental health’ discourse and developments. Given the way in which other would-be progressive developments associated with attempts to include experimental knowledge in this field, such as ‘recovery’ and ‘peer support’, have been subverted, this article considers whether it is possible for Mad Studies to avoid this. Drawing on developments in Disability Studies and in relation to the social model of disability, we explore what can be done in order to safeguard the distinctiveness of Mad Studies and foster its unique contribution.     

Service user/survivor-led research in mental health: epistemological possibilities

This paper considers possible epistemologies for user-led and survivor research by drawing on four discourses: the mainstream English tradition, Canadian Mad Studies, critical theory more generally and feminist standpoint epistemology. It discusses general, universalising epistemologies, the extent to which these characterise the discourses at stake and the problems with knowledge claims that rest on such singular conceptualisations. The institutional and political concomitants are considered. The paper has an additional double aim: to engage with survivor scholarship around critical theory and to insert that scholarship into the field of critical theory itself in a novel manner.     

Lay theories and criticisms of mental health news: elaborating the concept of biocommunicability

Abstract

This article examines how mental health service users/consumers, advocates, professionals and researchers interpret and theorise the impacts of mental health news. It focuses on the following themes: Creating fears about mental illness by focusing on criminal and violent acts; Reinforcing power imbalances by privileging biomedical issues and sources; and Sanitising mental health issues through the selective use of personal narratives. The study draws upon the concept of biocommunicability, which casts light on the performative power of health news in reinforcing ideas and expectations about the appropriate role for different actors to adopt in relation to health knowledge. Previous research on health news has identified biomedical authority, patient-consumer and public sphere as three predominant models of biocommunicability and this article examines how these are bound up with criticisms of mental health news. The findings are related to the ‘mediatisation of psychiatric culture’ as one of extremes and perspectives from Mad Studies.     

An equality of condition framework for user involvement in mental health policy and planning: evidence from participatory action research

Discussions about user involvement in the mental health services tend to throw up four major areas of concern: the capacity of service users to participate, their lack of participation skills, the need for a positive organisational culture and the need for arenas of participation. This article presents evidence from participatory action research with Irish mental health service users which explored how they could more equally participate in advisory committees. Participants identified barriers to their equal participation due to unequal cultural, physical, mental and economic resources, time, power, ‘stigma’(prejudice) and lack of respect for their experiential knowledge and emotional expression. These barriers fall within the ‘equality of condition framework’ developed by Baker and colleagues. Enabling equal user involvement in strategic decision‐making requires more than arenas of participation – it requires comprehensively addressing service users’ structural disadvantages throughout the process of involvement.     

‘I am not your nutter’: a personal reflection on commodification and comradeship in service user and survivor research

Abstract

This article offers some personal reflections from a mental health service user/survivor researcher working in English academia. It is a critical examination of what mainstream clinical mental health researchers and funders appear to need us to be, and what some in the service user and survivor movement perceive us to be. The discussion examines questions about commodification and public and patient involvement and contemporary challenges for service user and survivor research as a separate discipline operating within and beyond academia in England. The article concludes by exploring potential strategies for collaborative activism for service user and survivor researchers in academia based on the concepts of social capital and situated solidarity.     

The Engaged Academic: Academic Intellectuals and the Psychiatric Survivor Movement

This paper considers some political and ethical issues associated with the ‘academic intellectual’ who researches social movements. It identifies some of the ‘lived contradictions’ such a role encounters and analyses some approaches to addressing these contradictions. In general, it concerns the ‘politico-ethical stance’ of the academic intellectual in relation to social movements and, as such, references the ‘theory of the intellectual’ associated with the work of Antonio Gramsci. More specifically, it considers that role in relation to one political ‘field’ and one type of movement: a field which we refer to, following the work of Peter Sedgwick, as ‘psychopolitics’, and a movement which, since the mid- to late-1980s, has been known as the ‘psychiatric survivor’ movement—psychiatric patients and their allies who campaign for the democratisation of the mental health system. In particular, through a comparison of two texts, Nick Crossley's Contesting Psychiatry and Kathryn Church's Forbidden Narratives, the paper contrasts different depths of engagement between academic intellectuals and the social movements which they research.     

Expert views of children's knowledge needs regarding parental mental illness

Children of parents with a mental illness are at significant risk of developing a mental illness. This risk may be reduced if appropriate interventions are provided that include information and knowledge about mental illness. While there are some interventions for children of parents with a mental illness, research is lacking about the type of mental health information children need and why they need that knowledge. This study presents the perspectives of a purposive sample of international research experts in the field of parental mental illness about the kind of mental health literacy information children with parents with a mental illness need. Twenty-three participants completed a self-constructed short answer questionnaire about the knowledge needs of children of parents with a mental illness. The qualitative data indicates that ‘identifying information’, ‘making sense of parents behaviour’, ‘coping better’ and ‘respecting safety’ are key knowledge needs of children. Given the views presented, these findings suggest that health care professionals should advocate for policies that support individual-, peer-, and family-focused programs driven by strong evaluation and rigorous research. If this is done, children of parents with mental illness may experience ‘myth busting’ of incorrect information about mental illness.     

Mental health social work in Northern Ireland and the Republic of Ireland: challenges and opportunities for developing practice

Drawing on their experience of mental health social work in Northern Ireland and the Republic of Ireland, the authors examine the impact of current legislative and policy change in both jurisdictions. The paper applies Lorenz's theoretical framework to develop a comparative analysis of how global and country specific variables have interacted in shaping mental health social work. The analysis identifies linkages between factors and indicates similarities and differences in mental health social work practice. The paper highlights emerging discourses in this field and explores the impact on practice of developments such as de-institutionalisation, community care, and ‘user rights’ versus ‘public protection’. The article concludes with a review of key challenges facing social workers in both jurisdictions and identifies opportunities for developing mental health social work in ways that can positively respond to change and effectively address the needs of mental health service users and their carers. The analysis provides an opportunity to evaluate Lorenz's theoretical framework and the paper includes a brief critical commentary on its utility as a conceptual tool in comparative social work.     

Recognizing experiential knowledge in the process of qualification of peer helpers: an analysis of an educational program for service users in France

ABSTRACT

This article analyzes an innovative training program enabling the qualification of peer carers, working within the sector of ‘social inclusion’. Since the French national debate on social work conducted within the ‘Estates General’ of 2015, peer workers have become key players in training programs in virtue of their experiential knowledge and their understanding of issues related to the process of social exclusion. This article addresses the role of peer helpers’ experiential knowledge in the training process. Because of their ‘experiential’ and ‘empirical’ knowledge about questions linked to the process of exclusion, peer helpers have become key players in social work teams and within social institutions, thus contributing to new methods of socio-educational intervention. What impact will this recognition of peer helpers’ and service users’ experiential knowledge have on education in social work? This article gives an account of an 8-month training program for peer helpers examined on the methodological level through a process of Participant observation, and based on data from comprehensive interviews carried out with a panel of peer helpers.     

Finding ways (and words) to move: Mad student politics and practices of loneliness

Abstract

By blending the conceptual frameworks of epistemic injustice and ethical loneliness and applying them to campus-based practices of ‘risk’ identification and ‘referral’, this article describes how Mad students come to be abandoned as knowers and learners. I then dwell in and politicize the condition of (ethical) loneliness these harms produce by seeking to ‘practise’ it as a form of Mad knowing, and as a framework for visioning justice. Framing Mad student experiences in this way opens up several possibilities for epistemic justice. First, it offers additional language and interpretive resources for naming and protesting our experiences of violence. Second, it compels us to understand and attend to Mad student experiences of epistemic harm and to recognize how Mad knowledges are routinely generated in their wake. Third, it invites new ways of understanding and responding to these harms, and imagining redress.     

Symptoms of Mental Health Problems: Children’s and Adolescents’ Understandings and Implications for Gender Differences in Help Seeking

Amidst concerns that young people’s mental health is deteriorating, it is important to explore their understandings of symptoms of mental health problems and beliefs around help seeking. Drawing on focus group data from Scottish school pupils, we demonstrate how they understood symptoms of mental health problems and how their characterisations of these symptoms as ‘rare’ and ‘weird’ informed participants’ perceptions that peers, teachers and parents would respond to disclosure in stigmatising ways. Consequently, participants suggested that they would delay or avoid disclosing symptoms of mental health problems. We highlight subtle gender and age differences and outline implications for policy and practice.     

Disentangled,decentred and democratised: Youth Studies for the global South

Youth Studies’ theories often assume universal generalisability despite rarely making the global South, or its youthful populations, ontologies, values and politics the focus of research. This paper grapples with the idea of a Youth Studies ‘for’ the global South, questioning whether theories/approaches that centre on the global North can be usefully applied in the global South, how and for what purpose. After describing two mainstream domains of Youth Studies scholarship, questioning how they may become applicable to Africa, Latin America and developing countries in Asia, we explicate the geo-politically situated nature of knowledge production. We ask how theories that originate elsewhere can be adapted and put to work in new contexts, contributing towards a Youth Studies that enhances the lives of youth on the global periphery. In Southern sites urgent material challenges dominate young people's lives, requiring theories that are able to analyse the multi-dimensional contextual constraints youth experience. Knowledges can be useful regardless of where they originate, but only when they become intentionally entangled in local realities and are adapted accordingly. We argue, however, that a Youth Studies for the global South needs to demonstrate its relevance beyond applying theories to new local sites. It should be able to say something more general about the human condition. In the current conjuncture of economic instability, we believe that contexts where youth have had to adapt, hustle and survive in precarious conditions for an extended period of time might demonstrate something unique about the human condition, but only if we make these places the focus of our research gaze. The paper concludes with suggestions to enable a Youth Studies for the global South, one which may contribute to this emerging field more effectively through intentional strategies of disentangling, decentring and ultimately democratising the field.     

Indigenous research methodology – weaving a research interface

ABSTRACT

Indigenous research Knowledges and methodologies have existed over millennia, however it is only recently that Indigenous scholars have been able to challenge institutional Western hegemony to reclaim sovereignty in the research space. Despite the high volume of quantitative research describing Aboriginal and Torres Strait Islander health, there has been limited evaluation of the value added through incorporation of Indigenous Knowledges and methodologies. ‘Research at the interface’ has been discussed as an Indigenous research methodology for researchers to contextualise and inform their research practices, between Indigenous and Western systems of knowledge. In this article we address the significance of ‘research at the interface’ for Aboriginal and Torres Strait Islander research, as an exciting opportunity for innovation to ensure strength, self-determination and resilience for Aboriginal and Torres Strait Islander communities engaged in research. We also introduce weaving a methodology for ‘research at the interface’ as a process for conceptualising Indigenous and quantitative research methodologies at the interface.     

Cultural Studies and its local resources: discourse and practice in the Rural Reconstruction Movement

ABSTRACT

Emphasis on ‘context’ and ‘practice’ has been the tradition of Cultural Studies. Now Cultural Studies in Mainland China are facing the following difficulties: lack of attention to local issues and thoughts, lack of holistic horizon and sense of history. How can Cultural Studies in Mainland China search out more potential recourse and forces for critique and resistance from modern China and urban–rural China and confront Chinese problems and experiences which are of great complexity, by returning to its unique historical and social context and taking local resources into consideration? We try to return to the long-term engagement in ‘action-writing’ practice in the Rural Reconstruction Movement. Under the unique perspective of ‘practitioner-researcher’, they hope to explore plural spaces veiled by the mainstream and search out, in the historical context of China, local resources for Cultural Studies and possibilities for its advancement.     

Being a service user and a social work academic: balancing expert identities

Abstract

I am a service user and academic working in a university social work department. My hybrid identity allows me to draw on different types of knowledge in all aspects of my work, including: academic, practice and experiential wisdom. Service user involvement is mandated across social work education but the scope and breadth of different kinds of participation is developed in diverse ways across university contexts. This article affirms the value of service user involvement in health and social care education, exploring its positive impact on students. When lecturers share personal experience of using services alongside practice and academic wisdom in the course of teaching, sometimes the value of experiential knowledge is doubted and its influence dismissed. I examine the importance of experiential wisdom in social work education, specifically when it is embedded in an academic role in a university social work department, and consider how it can be respected and valued. The parallel experiences of involving peer support workers in mental health services, who use their knowledge of recovery to mentor other service users, are then briefly examined, together with reflection of the concerns across mental health with professionals sharing their experiential wisdom with the people that they support.     

Fathers' involvement and the impact on family mental health: evidence from Millennium Cohort Study analyses

This paper reports evidence from the Millennium Cohort Study (MCS) on the relationship between fathers' involvement and the mental well-being of mothers, fathers and children. Drawing on previous research, we use a tripartite definition of father involvement: engagement, accessibility and responsibility. After searching 14 databases and websites, we screened for applicability, coded, quality assessed and synthesised the evidence. The majority of studies focused on ‘accessibility’ in terms of family structure or on ‘responsibility’ in terms of father employment. Overall, the studies suggest that aspects of fathers' involvement can positively influence both maternal and child mental well-being; fathers' mental health was only analysed in relation to one aspect of involvement: parental or father employment was found to influence fathers' mental well-being positively. Further MCS-based research is recommended to examine the impact of fathers' involvement on their own mental well-being, as well as the broader impact of a more active or ‘modern’ fatherhood model encompassing engagement and an understanding of responsibility beyond the breadwinning role.     

Recovery From Mental Health Problems: Scratching The Surface Without Ethnography

This article examines a central plank of mental health policy (‘recovery’) in societies which have attempted to reverse the long-term warehousing of those with a diagnosis of mental disorder (de-institutionalisation). The emergence of the concept is traced in relation to the shift from an institutional to a more dispersed and community-based form of service organisation. Different usages of the term ‘recovery’, each with distinct implications for practice are considered on the part of three main interest groups (traditional bio-medical psychiatrists; social psychiatrists emphasising social skills training; and dissenting service users). These different usages suggest that ‘recovery’ is a polyvalent concept that creates an uneasy consensus point to define the management philosophies of local services enacting mental health policy. Also mental health work is about more than the group of patients mainly considered in relation to recovery (those with ‘severe and enduring mental health problems’). Practice-near research strategies are now required to investigate the varied practical scenarios these contradictions generate and ethnographic research is therefore indicated. Without multiple ethnographies, we will be left with competing rhetoric about recovery and its meaning or meanings may be rendered worthless.     

Measuring the health patterns of the ‘mixed/multiple’ ethnic group in Britain: data quality problems,reporting issues,and implications for policy

The ‘mixed’ group, officially recognised in the 2001 Census, is one of the most rapidly growing ethnic groups in Britain. Although ‘mixed’ categorisation was added to ethnic coding in NHS datasets, our knowledge of health patterns for this population is meagre. Data quality problems remain a key obstacle, including poor reproducibility of the data and constraints on reporting due to sparse data bias. The consequent minimal and indicative evidence base has focused mainly on risky health behaviours, mental health and generic measures of self-rated health, as it has in the U.S.A. and Canada. There is negligible information on the main underlying causes of death, such as neoplasms, heart disease and stroke. Consideration should be given to pooling data across multiple years of health and general purpose surveys to enable reporting for the four ‘mixed’ categories and adjustment for mediating factors and relevant confounders, such as measures of socio-economic status.     

A quick reference guide to mental health on university campus: a brief rhetorical analysis of fear

I was teaching rhetoric at the University of Victoria when I received the ‘Quick Reference Guide: Assisting Students in Distress’, part of the university’s initiative to address the increasing problem of mental illness on university campuses. I immediately read a rhetoric that presented mental health as Madness, as something to be feared, a threat to the university, class and the individual. This short article is a brief rhetorical analysis of this Guide, and suggests that we must move beyond fear if we are to begin to address the mental health crisis on university campuses.