‘Madness’ After The War

Exploring Alternatives to Dominant Understandings of Mental Health in the Context of Political Conflict

Dr Reima Maglajlic
University of Sussex
SMALL GROUP PROJECT: MAY 2019 – FEBRUARY 2020

Abstract

As a global development priority, mental health is a challenge beyond the scope of a single discipline. It requires new modes of inquiry to advance new knowledge and support practices. The proposed study aims to offer new insights on mental distress following the political conflict in Bosnia and Herzegovina (BiH) – a site of various post-war development interventions. One of the rare development successes was the introduction of community mental health services, including the development of organisations run or led by people who use mental health services as experts by experience (EBE).

To date, the impact of the war on mental health is mainly conceptualised and researched through Western and medicalised understanding of mental distress. Reforms in BiH have been criticised for being predominately shaped by donor interests. Meaningful engagement with EBE has been identified as missing from much global mental health research and practice, particularly in low- and middle-income countries. This exploratory study will be implemented through co-production by two professionals with a variety of disciplinary backgrounds and two BiH EBE. It will entail narrative interviews with people from two BiH regions on their experiences of mental distress and support they received.

The proposed research is underpinned by the emerging interdisciplinary field of Mad Studies which offers a critical challenge to the medical model of mental distress. It takes an interdisciplinary approach to contextualising and historicising madness. Furthermore, narrative analysis of the data will utilise the concept of border thinking from decolonial theory, enabling focus on the lived dimension of experiences which have been excluded from knowledge production. In line with the ISRF goals, this study will offer insights into novel ways of understanding and supporting people experiencing mental distress and promote them across a variety of relevant fields and disciplines.

The Research Idea

The study aims to offer new insights into understanding and supporting people who experience mental distress following the political conflict in Bosnia and Herzegovina (BiH; see ‘Focus’ for location rationale). The way professionals engage with the experiences of mental distress is often bound and shaped by particular labels (such as post-traumatic stress disorder) and services (such as community mental health services or psychiatric hospitals). The innovative thesis is that this study’s aims can be conceptualised, explored, and new practices formed through co-production with people who use mental health services as experts by experience (EBE), underpinned by knowledges generated within the emerging interdisciplinary field of Mad Studies (1) and decolonial theory (2). Meaningful engagement with these experts is missing from a great deal of global mental health research and practice (3), particularly in low- and middle-income countries (4).

The proposed exploratory study has the following objectives:

– To provide insights informed by lived experience of mental distress following the war in BiH beyond the focus on traditional mental health labels and services;

– To suggest implications for research, policy and practice directions informed by the experiences and knowledge of EBE.

Research questions include:

How does political conflict impact the lives of adults labelled as having mental health issues, both during and after the war?

How do experts by experience themselves understand and interpret their distress?

Which ways of understanding mental distress and resultant practices (professional and otherwise) do EBE perceive as most helpful to improve their overall wellbeing and why?

Background

The impact of war on mental health has been well documented (5). However, it is mainly conceptualised through Western and medicalised understanding of mental distress and wellbeing (6). Medical labels such as post-traumatic stress disorder (PTSD) tend to dominate the ways professionals, people with mental health issues, and the public alike, understand and support war-induced distress (7). As products of social processes, diagnoses like PTSD can have both desirable and problematic effects (8).

Even interdisciplinary fields such as global mental health have been criticised for overreliance on the medical model of distress (9). However, emerging research, policy and practice offers alternative approaches to mental health (10). For example, the 2018 Lancet Commission on global mental health aims to take seriously both the social determinants of mental health and to produce knowledge in partnership with EBE (11). Our work aims to contribute to these developments.

There is also a growing emphasis on the importance of EBE both conducting research themselves or taking an active part in knowledge production in other ways. Mental health ‘survivor research’ has been slowly developing over the past few decades (12). Initiatives such as patient involvement in health care or co-production in social care (13) call for active collaboration between relevant mental health professionals and EBE. Nonetheless, research and practice led or run by EBE is identified as lacking in relation to the context of political conflict and in low- and middle-income countries (LMIC; 14).

The Focus

As suggested by the research objectives, the study focuses on novel ways of supporting people experiencing mental distress and on exploring ways to promote innovative post-war mental health practice.  This focus is relevant and new for two main reasons.

First relates to the choice of location for the study. Community-based mental health interventions have been identified as the most appropriate for the LMIC and post-conflict contexts (15), yet underdeveloped (16). There is also a lack of service user associations, identified as important for the development of community-based services in LMIC (17). BiH is one of the rare post-conflict and middle-income contexts which introduced a country-wide development of community-based services (18) – accompanied by the development of service-user run organisations, of which only one remains (‘Fenix’ in Tuzla, NE Bosnia) and service user-led organisations (such as ‘Menssana’ in Sarajevo, the capital of BiH) (19). Their development was supported by the PI between 1999-2007. The representatives of the two noted organisations have research training and experience and are Co-Investigators on the proposed study.

Second, both the implementation of development reforms in BiH and research on these reforms have been criticised as driven by donor priorities and agendas (20). Hence, the study is an opportunity for co-producing knowledge on service users’ own priorities for support, free from externally defined funding priorities. Participating BiH organisations can use such knowledge to advocate for new service development. Internationally, collaborators plan to utilise this learning to encourage novel mental health practices in global mental health and development.

Theoretical Novelty

The key conceptual innovation evolves around interdisciplinary co-production of knowledge (among professionals and people who use mental health services) utilising the lenses of Mad Studies (21) and border thinking (22). The interdisciplinary research team members have backgrounds in a range of disciplines and practices, including mental health, post-war social welfare and social work reform, global mental health, development, psychology, as well as expertise gained through using mental health services. Genuine co-production in mental health is relatively new and under-utilised (23).

Mad Studies takes an inclusive interdisciplinary approach to contextualising and historicising madness (24). This novel field of scholarship is embedded in the experiences and values of people who identify with a variety of names related to mental distress and wellbeing – from ‘Mad’ to ‘neuro-diverse’ (25). It aims to redress the power imbalance in the knowledge production in mental health (26). To enable such redress, narrative analysis of the data (see ‘Methodology’) will utilise ‘border thinking’ (22). Stemming from decolonial theory, it enables focus on the lived dimension of experiences excluded from knowledge production. According to this concept, theories and experiences may ‘sit’ at the borders – if not outside of – the dominant matrix of power. Border thinking will be used to trace the borders of different epistemological approaches to madness, alongside navigating the local/global in mental health care. This fresh approach can enable co-productive focus on people’s own experiences of wellbeing and distress in the context of political conflict, identified as lacking in current scholarship.

Methodology

Existing literature on Mad Studies (26) challenges the ‘traditional’ expertise and illuminates the global and local power dynamics of knowledge production. Hence, a co-productive process through which different disciplinary inputs interact in the study is important. Drawing on knowledge from Mad Studies and decolonial theory, the research team of four (two professionals with different disciplinary backgrounds – including the PI who speaks local languages and worked in BiH – and two BiH EBE from a user-run and a user-led organisation) developed the proposal and will collaborate on all stages of the research process – finalisation of the research methodology, data gathering, data analysis, promotion and utilisation of the findings.  This will be facilitated through two face-to-face meetings (at the start of the study and for data analysis) and regular skype meetings.

Due to the novelty of such research, we will conduct an exploratory qualitative study utilising narrative interviews with people who use mental health services (27). Paying attention to the gender and balance between people living in rural and urban areas, 20 adults who have used mental health services will be identified through the BiH partner organisations and interviewed by the two BiH EBE in two BiH Cantons (administrative organisational units), Tuzla and Sarajevo (10 in each location). Interviews will focus on their wider experiences of distress and wellbeing during and after the war, rather than solely on engagement with mental health services. As noted, narrative analysis will utilise the lens of ‘border thinking’ to interpret the data.

Work Plan

Following approval, the work plan includes:

– Ethical approval for the study (University of Sussex, month 1 and 2);

– A two-day meeting in BiH to ensure finalisation of the overall research design including interview guide (whole team, month 3);

– Identification of relevant research participants (BiH team members, supervised online by the PI, months 4 and 5);

– Interviews with the identified participants (BiH team members, supervised online by the PI, months 5 and 6);

– Interview transcription and transcript checks with the study participants (BiH researchers), English translation of the transcripts (PI), analysis (whole team), analysis summary review with the research participants (BiH researchers) – this phase includes a two-day face-to-face meeting in BiH (whole team, months 5-7);

– Finalisation of the dissemination strategy and documents – including monthly Skype meetings of the whole team (months 8 -10).

Planned outputs include:

– Two academic articles in ‘Disability & Society’ and ‘Health and Place’ (one led by the PI, the other by the CI);

– A research report in Bosnian, to be used by the BiH organisations (led by the BiH researchers);

– A briefing for relevant professional and service user international organisations (international organisations such as the WHO; professional associations and Networks the research team take part in, such as the Development Studies Association, Mental Health Innovation Network; the European Network of Users and Survivors);

– A news article aimed at promoting the findings among the general public (either in The Conversation or The Guardian).

Outcome

Generated knowledge will be co-owned by the research team and the participating BiH organisations. The planned longer-term outcome of the study is to inform and support the development of innovative community based mental health services, co-produced with or independently developed and implemented by, the EBE in BiH to address the ‘real-world social problem’ of post-conflict distress. Through our methodological approach, we aim to inspire the broader use of collaborative interdisciplinary research, co-produced in a meaningful way, alongside EBE. This is timely as mental health is an identified global development priority and included in the UN Sustainable Development Goals (SDG; 28).

To work towards these outcomes, study outputs are to be mobilised in different ways, keeping in mind the exploratory nature of the study.  Locally, the two associations will be supported to consider where and how to utilise the findings, develop a realistic dissemination plan, practice plan and identify potential funders for development of new practice initiatives, if and where relevant. Internationally, the briefing will be disseminated to relevant networks (for example, the Mental Health Innovation Network) and bodies (identified in the work plan), and through high-profile mental health websites (such as Mad in America). Following the completion of this project, the research team will also promote the findings at relevant conferences and professional meetings. Members of the research team also plan to develop a larger funding proposal to build on this work (for example, to the BA/Leverhulme Small Research Grant opportunity or Wellcome Small Grants in Humanities and Social Science).

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(18) For further details, please visit http://www.mentalnozdravlje.ba/the-mental-healthcontext-in-bosnia-and-herzegovina, also

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(19) https://tkfenix.ba/

http://www.menssana-sarajevo.org/

See also – Maglajlic, R.A. (2016). Co-creating the ways we carry each other: reflections on being an ally and a double agent. In: J. Russo & A. Sweeney (eds.) Searching for a rose garden: challenging psychiatry, fostering mad studies. Waystone Leys: PCCS Books Ltd, 210-220.

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(21) A book published in 2013 is widely accepted as the crucial text initiating wider interest in Mad Studies, namely – LeFrancois, B. A., Reaume, G. & Menzies, R.J. (eds.) (2013). Mad Matters: A Critical Reader in Canadian Mad Studies. Toronto: Canadian Scholar’s Press. The term itself was coined by Richard Ingram in 2008 – from Faulkner, A. (2017). Survivor research and Mad Studies: the role and value of experiential knowledge in mental health research. Disability & Society, 32:4, 500-520.

(22) Maglajlic, R.A. & Basic Cekic, S. (forthcoming, 2019). Critical reflection on the social work experiences in Northern Ireland – perspectives from Bosnia and Herzegovina. In Duffy, J., Campbell, J. & Tosone, C. (eds.) International Perspectives on Social Work and Political Conflict. London: Routledge.

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