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‘Madness’ after the war in
Bosnia and Herzegovina –
challenging dominant
understandings of distress
Reima Ana Maglajlic
University of Sussex, UK
Halida Vejzagić
CPI Foundation, Bosnia and Herzegovina
Jasmin Palata
Independent Researcher, Bosnia and Herzegovina
China Mills
City, University of London, UK
Abstract
This article reports on the findings from a small-scale co-produced qualitative study on
experiences of distress caused by the war in Bosnia and Herzegovina (BiH). Inspired
by the emerging interdisciplinary field of Mad Studies, the study is novel and unique in
two ways. First, it prioritises social understanding and interpretation of madness and
distress. Second, an emphasis is placed on experiential knowledge. Beyond interviews
with 20 people who experienced distress due to political conflict, this included
contextualisation of the study in the knowledge generated through survivor research
and within the field of Mad Studies. Study findings highlight the social causes and
consequences of distress caused by conflict, such as war-related violence, gender-based
violence, experiences of poverty and corruption. Participants stressed the importance
of safety and support within their own home, mutual and supportive relationships with
their families, friends, other people who experienced distress, the broader community
and opportunities to do everyday activities they enjoy. In terms of professional support,
Corresponding author:
Reima Ana Maglajlic, Department of Social Work and Social Care, University of Sussex, Essex House,
Falmer, Brighton BN1 9QQ, UK.
Email: R.A.Maglajlic@sussex.ac.uk
1139717HEA0010.1177/13634593221139717HealthMaglajlic et al.
research-article2022
Article
2 Health 00(0)
the findings suggest that poverty alleviation and protection of people’s right to self-
determination through access to human rights advocacy and representation may be
as relevant as non-coercive community-based services. This indicates that support for
distress caused by political conflict need not be different from any other support for
people who experience distress. Emphasis should be placed on survivor-run initiatives
and non-coercive, community-based support which addresses social causes of distress
and enables people to exercise self-determination.
Keywords
experiencing illness and narratives, mental health, narrative analysis, Organisation of
health services, sociology of health in developing countries
Introduction
This article reports on the findings from a small-scale qualitative study on experiences of
distress caused by the war in Bosnia and Herzegovina (BiH in further text). Inspired by
the field of Mad Studies (Beresford and Russo, 2021; LeFrançois et al., 2013; Russo and
Sweeney, 2016), the study is unique in two ways. First, the objective was to explore how
people understand and interpret their distress, rather than professional interpretations or
assessments of such experiences. Second, the study was co-produced by social science
researchers and co-researchers who themselves experienced distress due to the war in
BiH. As highlighted by Russo (2016: 60): ‘Madness can be researched in many different
ways and from many different perspectives. It has, however, rarely been studied from the
perspectives of those labelled mad, and even less often from the standpoint of their
shared knowledge’.
On a related note, the potential to be ‘disqualified as a legitimate knower’ (Liegghio,
2013: 123) extends beyond experiences of distress. Post-conflict countries are frequently
subject to development policy and practice. Such international involvement can include
‘nothing short of the managed reorganisation of state and society’ (Mosse, 2004: 3). This
study, funded by the Independent Social Research Foundation, was conceived, and led
by people whose languages and histories are part of BiH. Hence, both in relation to dis-
tress and the study context, the findings emerge from ‘within the reality it seeks to under-
stand [as] first-person knowledge [which has] different grounding and enables different
epistemology than knowledge coming from any third person, outside perspective (Russo,
2021a: 25, author’s emphasis).
The first section covers the study background and context in relation to the post-war
reform of mental health services in BiH and dominant (medical) understanding of dis-
tress caused by political conflict. This is followed by a brief overview of the study in
relation to the field of Mad Studies. A section on methodology explains the process of
research co-production and the methods used for this small-scale qualitative study. Both
Mad Studies and survivor research in mental health centralise experiential knowledge of
distress (Sweeney, 2016a). Hence, our findings are written up in dialogue with the litera-
ture on experiential knowledge. In the conclusion, we consider the implications of the
findings for further activism and research within the field of Mad Studies.
Maglajlic et al. 3
Note on language
Language used in the article varies, both in relation to the context of its use and/or
the translation required from Bosnian, Serbian or Croatian. These choices are led by
the primacy given to experiential knowledge and understanding. Experiential learn-
ing and knowing is referred to as ‘survivor research’ and ‘Mad Studies’ (Sweeney,
2016a). Breslow (2019: 59) refers to professional knowledge and mental health ser-
vices as the ‘troubled persons industry’. Their terminology is used in the article
when, for example, discussing the reform of mental health services in BiH or if used
by the study participants. While not native to Bosnian, Serbian or Croatian lan-
guages, terms such as madness and Mad Studies translated well (ludost) and spoke
to the experiences of study co-researchers and participants. Practices which may be
referred to as ‘peer initiatives in mental health’ in Western European and North
American contexts (Faulkner, 2017) are referred to as ‘mutual support’ initiatives.
This offers a more accurate conceptual, cultural and practical insight into how such
support is organised in BiH.
Study background and context
This section provides a brief critical overview of common understanding of distress
caused by political conflict, mental health services in Bosnia and Herzegovina, and how
this study was inspired by the emerging field of Mad Studies.
Understanding distress caused by political conflict
Knowledge about distress caused by political conflicts is rooted in Western and medical
understanding of distress. This applies to children’s experiences as civilians (e.g.
Attanayake et al., 2009) or soldiers (Betancourt et al., 2013), experiences of adult civil-
ians (Johnson and Thompson, 2008; Musisi and Kinyanda, 2020) or military (Hom et al.,
2017; Nematshahi et al., 2020), as well as broad understanding of mental health conse-
quences of war (Murthy and Lakshminarayana, 2006). Even studies which aim to develop
culturally relevant new understanding of war-induced suffering rely on concepts, diag-
nostic tools and research methods associated with medical understanding of distress,
such as Post-Traumatic Stress Disorder (see, e.g. Barber et al., 2016).
Beyond counting and categorising medical understanding of distress, studies also
mainly focus on people’s experience of mental health services. This reflects the experi-
ences and practices in our research team, too. Despite a commitment to experiential
understanding of distress, our previous research focused on people’s experiences of
Community Mental Health Centres (CMHCs) established after the war (HNI and
SWEBIH, 2003). Research questions included, for example, ‘what is your experience
of your local CMHC? Which of their services do you use? What works well in it and
what can be improved?’. These studies were conducted to assess the progress of the
reform of mental health services. Reflections on these experiences are included in a
more detailed critique of dominant understanding of distress caused by political conflict
(see Maglajlic, 2021).
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Support for mental distress in the post-war Bosnia and Herzegovina
Before the war, support for any experience of distress was primarily organised through
psychiatric departments in general hospitals and/or large, long-stay, hospitals. Many of
such institutions in BiH were damaged and destroyed during the war. Following the war,
a decision was made not to rebuild such institutions. Instead, Community Mental Health
Centres (CMHCs) were created within the community primary health care centres1
(Kucukalic et al., 2005; Racetovic et al., 2017). This reform was supported by the World
Health Organisation, funded by the European Commission, and implemented by the
Ministry of Health of the Federation of BiH.2 It was later rolled out across the country.
Each CMHC is supposed to be staffed by a psychiatrist, psychologist, four nurses and a
part-time social worker, although staffing levels vary across the country. Such commu-
nity-based mental health interventions have been identified as the most appropriate for
post-conflict and low- and middle-income contexts such as BiH (Kamali et al., 2020;
WHO, 2008), yet are underdeveloped (Al-Tamimi and Leavey, 2021).
Parallel to the development of CMHCs, non-governmental ‘Associations for mutual
support in distress’ (direct translation from Bosnian/Serbian/Croatian) were initiated in
early 2000s. These were either run or led by people who experienced mental distress dur-
ing the war. This model built on a former Yugoslav tradition of citizen associations,
based on a range of special interests (from sports to disability groups). One relevant
example is the Committee for Social Protection of Madness which existed in the 1980s
in Ljubljana, present-day Slovenia (Flaker et al., 2015). BiH Associations were less radi-
cal in focus. Only one survivor-run Association still operates today – Fenix in Tuzla, in
North-East BiH. The early 2010s saw the emergence of non-governmental organisations
led by mental health professionals in collaboration with people who use mental health
services. One example is Menssana in Sarajevo, Central BiH. These are frequently linked
to the local CMHCs. Both types of organisations usually provide drop-ins, free time
activities, training and occasional employment opportunities for people who use mental
health services.
Becoming inspired by Mad Studies
The field of Mad Studies is based on diverse experiential knowledge, critical of main-
stream mental health services (LeFrançois et al., 2013). While novel, Mad Studies
emerged from a long history of mental health system survivor movements locally and
internationally (Costa, 2014). The term was coined by Richard Ingram in 2008, drawing
on the history of the ‘Mad Movement’ as presented in Irit Shimrat’s 1997 book ‘Call me
crazy’ (Ingram, 2021). Beresford (2021: 7) notes that there are three defining character-
istics of Mad Studies, all of which are represented in this study. First is the prioritisation
of social understandings and interpretations of madness and distress. Second, an empha-
sis is placed on first-person and experiential knowledge. Finally, the work in the field is
‘survivor-led, but not limited to survivors of the mental health system’ (Beresford, 2021).
‘Fenix’ and other BiH Associations have been involved in research on distress caused
by political conflict. Nonetheless, no study of mental distress and political conflict
Maglajlic et al. 5
conducted to date in BiH or elsewhere has asked, ‘What happened to you? How do you
make sense of your experience? What helps and hinders your wellbeing?’ Aiming to
contribute to the knowledge generated within the field of Mad Studies, this study had the
following research questions:
How does political conflict affect people and lead to mental distress?
How do people understand and interpret their distress?
Which ways of understanding mental distress and resultant practices (professional
and otherwise) do they perceive as most helpful and why?
By asking such questions, we aimed to restore ‘people’s epistemic existence’ (Liegghio,
2013: 127) in relation to their experiences of distress.
Methodology
Research co-production
The processes employed to explore these questions are not without complexity, particu-
larly due to the composition of the four-member research team and our commitment to
experiential knowing. The Principal Investigator (PI), Reima, is a social worker who is
part-Bosnian, part Serb-Croatian. Since 1999, she has supported the development of
associations for mutual support in mental distress, such as ‘Fenix’, and worked on the
reform of mental health services in BiH. During this period, she also established collabo-
ration with Halida, an activist from Sarajevo, also of mixed ethnic heritage, who experi-
enced distress during the war. She has been involved in previous research on the
development of BiH CMHCs with Reima, as well as a range of initiatives based on
experiential understanding of distress. They both have a prior working relationship with
the ‘Fenix’. The second BiH co-researcher, Jasmin, a Bosniak man, experienced distress
as a soldier during the war. He later got engaged in activism and research through ‘Fenix’.
The fourth co-researcher, China, is from the UK. She has lived experience of navigating
the UK mental health system both for herself and family members, although does not
identify per se as a psychiatric survivor. In the study, she had a role of a critical friend
throughout the research process, helping to extend the understanding of the findings
beyond BiH cultures, language and borders. Her role was also crucial in securing the
funding for the study.
We set out to co-produce a study on distress caused by political conflict. Faulkner
and Thompson (2021: 5) stress that ‘terms such as peer research, user-led research,
co-production, survivor research, user involvement in research and user-focused
research are used . . . without clear definitions’. Carr (2021: 143) queries whether
co-production is possible given ‘the relational, systemic and structural power
asymmetries’ in knowledge production. It is rare, for example, to find funding for
survivor-run research in mental health or for survivor researchers to have seniority
to lead on research bids (Faulkner et al., 2021; Sweeney, 2016b). It is similarly rare
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to secure funding for studies led by researchers from a post-war country. Our meth-
odological choices aimed to address such challenges in relation to the politics of
knowledge production (Landry, 2017). One example of this is provided in the section
on research ethics. Such challenges are more likely if people are not involved in all
phases of the work or if collaboration isn’t grounded in long-standing relationships
(Gillard et al., 2012).
Roles and activities within our research team build on the collaborative practices
developed within co-operative inquiry (Heron and Reason, 2001) and participatory
action research (Gillard et al., 2012). Co-production in the study included collaboration
in all phases of the research process – from preparation of the proposal for the funders,
development of the study methodology, sense-making from the fieldwork data to the
promotion of the study findings. These relationships and processes, summarised in
Table 1, enabled us to build trust and share decision making throughout the research
process. One of the tasks for Mad Studies is to disrupt established hierarchies of knowl-
edge production (Russo, 2021b). To our knowledge, such co-production of research on
distress and political conflict hasn’t been initiated to date.
Study methods
We utilised qualitative narrative interviews (Faulkner, 2017), based on a premise that
individuals make sense of their world most effectively by telling stories (Clandinin and
Connely, 1994). The two BiH co-researchers conducted the fieldwork, which comprised
20 interviews focused on the participants’ experiences of distress and wellbeing during
and after the war, rather than their engagement with mental health services. The semi-
structured interview guide was developed by the whole research team (see Table 1).
Reflecting on the whole study, the BiH co-researchers stressed how important it had
been to conduct the study using narrative interviews. This enabled them and the partici-
pants to develop a sense of trust and rapport. During fieldwork, each narrative was tran-
scribed by the BiH co-researchers and checked with the study participants during a
follow-up visit. The PI translated each narrative into English to facilitate engagement
with the UK co-researcher.
Study participants
All participants were identified through the two Associations that are run (‘Fenix’) and
led (‘Mennsana’) by people with lived experience of mental distress in locations where
the BiH co-researchers are active. When identifying 20 study participants, the research
team agreed to pay attention to the participants’ gender and age, as well as a balance
between people living in rural and urban areas. In total, 10 women and 10 men took part
in the study, with the age range between 26 and 70. Most of the participants were in their
40s. Achieving a balance of participants from rural and urban areas proved to be more
challenging; the study included only five participants from rural settings. The majority
(17) were also Bosniak, one of the three main BiH ethnic groups (alongside Croats and
Serbs). This is representative of the majority ethnicities in both Sarajevo and Tuzla
Cantons where the participants come from.
Maglajlic et al. 7
Table 1. Research relationships and activities.
Research team roles Activities
Pre-study
relationships
Principal Investigator (PI) Principal Investigator supported the development of survivor-run initiatives in mental health
in BIH between 1999 and 2007. Relationship with the BiH co-researchers stems from this
work and continued over the past 20 years.
Two BiH co-researchers who
experienced distress during
the war (co-researchers in
further text)
Funding
application
process
Full research team/authors of
the article: PI
PI identified a potential funder (ISRF) and suggested the idea to the BiH co-researchers and
the UK co-researcher
Two BiH co-researchers The proposal writing is led by the PI, but based on discussions with the entire Team, including
open discussion about the funding allocation and what is possible within the available budget.
UK co-researcher
Post-funding
approval
methodology
finalisation
Full research team The research team met in Sarajevo, BiH to finalise the methodology (sampling, interview
guide, analysis plans) and develop a protocol to ensure the two co-researchers are
supported during fieldwork.
PI provides methodological support, while the BiH co-researchers lead on the content
regarding methodological choices.
UK co-researcher acts as a critical friend to contextualise the work in relation to global
mental health.
Ethical approval PI with support from the rest
of the research team
No ethical approval is required in BiH. Ethical approval is sought and provided from the
PI University. Ethics application is prepared by the PI but based on the discussions and
agreement from the first research team meeting in Sarajevo.
Fieldwork Two BiH co-researchers
with support from the PI.
BiH co-researchers identify the participants, conduct the interviews, transcribe them and
check them with participants. They also keep diaries about the study process. PI provides
support during fieldwork and translates transcripts to English.
(Continued)
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Research team roles Activities
Sense-making
(analysis)
Full research team Second research team meeting is held in Sarajevo.
In preparation, all research team members read through the transcripts and identify themes
which answer the research questions and any other findings which seem of relevance to
people’s experiences of distress during and after the war. Discussions within the group help
identify the key study findings.
Plans are made how to present and promote the findings in the UK and internationally.
One co-researcher feels distressed due to the pressures of their other work. They are
supported to continue to contribute to the analysis and the write-up at a pace and in ways
which work for them. They lead on decisions regarding this process, clear that they can
disengage fully if they wish so.
Write-up and
promotion
Full research team PI is tasked with writing up the full research report in Bosnian, based on the agreements
from the second research meeting. Draft report is reviewed and approved by both BiH
co-researchers. English translation is prepared by the PI and reviewed by the UK Co-I. Both
versions are published on the ‘Fenix’ and ‘Menssana’ websites.
Co-researchers and their Associations continue to utilise the findings and the report within
their activities in BiH. PI and the UK co-researcher are tasked to write-up the findings in
English, for international audiences (as the two experts by experience don’t speak English).
Follow up
(research)
PI with one of the two BiH
co-researchers
One of the two BiH co-researchers wants to continue this work in other parts of BiH.
Opportunities for further research funding are sought, based on their interests and
preferences.
Table 1. (Continued)
Maglajlic et al. 9
Data analysis
Analysis of the interviews was facilitated through a research team meeting in Sarajevo
(see Table 1). Prior to the meeting, three Team members read and re-read the interviews
individually, using the research questions to guide consideration of each story collected
through the interviews. These were then discussed at the team analysis meeting to final-
ise our joint findings. Thematic narrative analysis within the team allowed us to keep the
stories ‘intact’ by theorising from each story, rather than component themes across all of
the personal narratives gathered through the study (Kohler Riessman, 2008: 53). This
was also demanded by our participants who wanted their stories to be heard (see the
Findings below).
Research ethics
Ethics procedures for the study were based on Faulkner’s (2004) Guidelines for the ethi-
cal conduct of research carried out by mental health service users and survivors. These
informed the development of the information sheet, consent form and the protocol for the
whole team collaboration during the study. These documents allowed us to: (1) plan for
potential distress by both researchers and the study participants, before, during and after
the fieldwork, (2) agree how to address that through mutual support and (3) in the case
of study participants, through their preferred sources of support. Ethical approval was
obtained from the University of Sussex.
The Protocol was tested when one of the BiH co-researchers attempted suicide
towards the end of fieldwork. The attempt was caused by pressures related to taking part
in a variety of advocacy and mental health promotion activities, rather than research.
Following initial recovery, the co-researcher decided that they no longer wanted to take
an active part in the analysis phase. They did want to continue to participate in the whole-
team discussions about the study, reflections on the fieldwork and discussions about
analysis led by the other team members. They were also happy to read all the versions of
the overall team analysis and contribute to the research report. These decisions were led
by the co-researcher and supported by the whole Research Team. Emotional labour
within and outside the research team was acknowledged and supported, rather than
pathologised (Faulkner and Thompson, 2021).
The BiH co-researchers faced additional ethical and power challenges during field-
work. A psychologist active in one partner organisation asked to sit in on the research
interviews. Their rationale was that this would help the BiH co-researcher, to ensure the
‘professional quality’ of their work. We did not permit this. Nonetheless, this example
raises concerns about how much professionals involved in purportedly collaborative
Associations in BiH understand and value experiential knowledge.
Study shortcomings
Study participants should have been paid or obtained a food parcel to thank them for
their time. UK University partners also provided a challenge as administrators for a col-
laborative and coproduced project. Almost all payments to the BiH partners were delayed
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by several months. This caused an impact of seismic proportions for the BiH partner
organisations which have limited sources of income. It also impacted the quality of life
of the BiH co-researchers during the study and deserves further consideration and atten-
tion for co-produced research in general.
Findings
This section is organised around the key themes that emerged across all 20 interviews
which answer the study questions. All quotes are presented under pseudonyms and with
a brief reference to the participants’ gender, ethnicity and age group. They are contextu-
alised in relation to other experiential knowledge generated through survivor research
and within Mad Studies.
Being heard
One of the key messages from all the people who took part in the study is that they don’t
feel listened to and ‘seen’ in the wider society. They want their stories to be heard and to
shape understanding of their experiences within the wider BiH society. Asja, a Bosniak
woman in her 30s, started her interview by saying:
“I wanted to take part in this study to tell you my story as much as I have strength to share it. I
want other people to hear it and see it”.
Vedad, a Bosniak man in his 50s, noted:
“The key thing that should change going forward is to listen to the people who use services a
bit more. Stories like mine should shape how professionals understand us. I just hope to keep
on living and to feel as well as I do now”.
Based on this finding, the main written report of the study includes all 20 narratives,
published in Bosnian/Serbian/Croatian and English (Maglajlic et al., 2020). These are
now used, for example, to educate BiH professionals and BiH public on people’s experi-
ences. Presenting them in this way honours the wishes of study participants and enables
‘re-storying of their experiences away from professional interpretations and explana-
tions’ (Liegghio, 2013: 124). Similar to survivor research, our process enabled ‘telling a
clearer story of what happened, making it visible and attributing a sense of reality to
them’, albeit not finite and finished (Tomlinson and De Ruysscher, 2020: 1282).
Evidence for a social model of distress and madness
All 20 participants identified that their distress was caused by experiences of violence
and injustice. Narratives in our study reveal external circumstances which led to emo-
tional distress (Lee, 2013). This echoes Shimrat’s (2013: 146) statement – ‘I have yet to
find a single person who did not enter the [mental health] system after some precipitating
trauma’.
Maglajlic et al. 11
Male participants linked their distress to combat-related violence and their struggle to
integrate into the realities of post-war life as former soldiers:
“War had a massive impact on me. The town itself and all that had happened. I don’t know how
to define it, the impact of war. There are two entities now, Federation and Republic of Srpska,
but we move everywhere, across entity borders. My problem is that I don’t know whom to spend
time with, whom to talk to, who can be my mate. That is what I think about. I have lost trust, but
I also forgave some people because war made them ill, too”. (Amar, a Bosniak man in early 40s)
Female participants’ accounts on the causes of distress were more varied. While some
attributed their distress to war experiences, others linked it to the gender-based violence
experienced elsewhere:
“This all started after I was attacked by a man. He followed me, abused me verbally and, finally,
he physically attacked me. This is why I have spent six months locked up in my house. I felt I
shouldn’t go out and had all the symptoms that I mentioned earlier. I have lost my job, too, all
because I wouldn’t leave the house”. (Ajša, a Bosniak woman in early 20s)
Beyond the distress caused by the war or gender-based violence, some women like
Dragana, a Bosnian Serb in her 50s, also noted how much she was also hurt and dis-
tressed by experiencing injustices caused by nepotism, favouritism or corruption:
“My first crisis happened in 1992, while I was a refugee. . . [but] it was only when we came
back to BiH, where I got a job in my own profession when I realised that something really
wasn’t right. The mood swings just continued, regardless. I functioned well at work, despite
working with people who had very different mentality and questionable qualifications for the
jobs they had. . . employed through nepotism and political affiliations. . .Because I wouldn’t
partake in [corruption that took place], I was transferred to work as a librarian for half the
salary. While I worked there, I really hoped that there would be an inspection, a financial
control of some sort and that they would all get arrested. I really couldn’t understand how such
corruption can remain unpunished. But inspections never came. My new library job wasn’t
well-paid and I had a lot of expenses. This caused me to react very emotionally and I wound up
on the Psychiatric Ward”.
These findings echo those from the mental health survivor research in the UK where
many ‘survivors make connections between their distress and broader social causes and
consequences, including poverty, isolation and stigma’ (Beresford, 2020, p. 1338). Our
findings corroborate Beresford’s call for a social model of madness and distress
(Beresford, 2020), as ‘the biomedical model depoliticises health and madness, holding
the individual accountable for their wellbeing, without meaningful consideration of
social, political and economic factors’ (Ashcroft and Van Katwyk, 2016, in Daley and
Van Katvyk, 2021: 257).
Importance of community-based support and mutual relationships
Participants stories suggest that they appreciate support found in mutual relationships with
their families, friends, other people who experienced distress, but also in relationships with
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the community-based mental health professionals. In that respect, participants’ views and
experiences are far more ‘anti-coercion rather than anti-psychiatry’ (Szasz, 2010, in
Reaume, 2021: 99). This was to be expected as ‘our thinking about madness doesn’t
start with a blank slate: it takes place on territory already occupied by a powerful and
well-established psychiatric discourse’ (Russo, 2016: 63).
For the majority of participants, the initial experience of distress led to their first con-
tact with mental health services. Within that space (of service provision), people start to
appropriate medical language to make sense of their experience, for themselves and
those around them. Kenan, a Bosniak man and a former soldier in his 40s, noted:
“Those war-related nightmares, isolation and fear had led me to seek help from my local
Community Mental Health Centre (CMHC). I got in touch with them and started a treatment
with a psychologist and a psychiatrist. They recognised that it’s PTSD”.
However, participants also stressed the value of peer support provided through the
Associations for mutual support in mental distress. Esma, a Bosniak woman in her 30s,
stressed:
“I have realised how important the Associations [for mutual support] are for the quality of life
of mental health service users. It is important to take them seriously and realise how important
they are. I realised I can function in a team. I first got involved in the cookery section and made
a meal with another member for everyone there. . .. If I can’t go, I get in touch with others and
they support me nonetheless. A few other Association members and I also have a group chat. It
is important to feel supported. If services were not available, the only way we’d survive is if we
have full and unconditional support from our loved ones. My Dad and my Auntie are like that,
always by my side. People who don’t have that would find it difficult with no support. We can’t
fight alone”.
This echoes experiences from other countries, such as Canada and the UK. Shimrat
(2013: 154) notes ‘ironically, we got a real sense of community from . . . other “sick”
people’. Beresford (2016: 48) highlights how important such organisations are ‘to take
forward our struggles as mental health service users/survivors. . .. This is likely to be
much more effective than trying individually to influence the service system and broader
politics’. However, the concern is that such initiatives may turn into ‘business of mutual
aid’ (Fabris, 2013: 130) where mental health professionals become involved or mutual
support becomes professionalised.
People’s overall sense of wellbeing was weaved together and supported by spend-
ing time with their loved ones (families and friends), doing what they like to do, being
able to spend time with people who had similar experiences to their own, as well as
contributing to their family life and income. Tarik, a Bosniak former soldier in his 50s,
explains:
“My family. . . they support and help me in every way. . . I became a father, too. My son is . . .
my guiding star and the aim that keeps me going towards recovery. . . I can share everything
with my family, friends and a close relative who had a similar illness. He even experienced
similar symptoms.
Maglajlic et al. 13
I love working around the house, gardening, taking care of the fruit plants and all the flowers.
I find it really fulfilling and I feel better when I’m active. I no longer use any other services, bar
my GP and my psychiatrist. I see them once per month for a check-up and to get my therapy. I
sometimes visit the Association. A friend of mine visits the Association, too. . . All I do is what
I choose and enjoy doing.
Talking with my friends and family helps me the most. I also have coffees and go fishing with
my mates. It helps me to relax. . . I just focus on catching a fish. . . .I don’t receive any benefits.
My wife and I live off her income. I mainly do house maintenance and gardening. Occasionally,
that helps me to earn a few Marks [Bosnian currency].”
Johnston (2020: 151) autoethnographic account of his experiences of distress in Canada
shows how ‘family members and peers can provide critical support’. The key difference
we noticed is that men, like Tarik, were able to start their own families, while women,
like Esma, mainly continued to live with their parents and other birth relatives.
Reflecting on her experiences in the UK, Smith (2019: 698) expresses a concern that
supportive families may be leaned on too much as ‘a necessary economic asset to the
[mainstream mental health services]’ without any resources or support. Equally, ‘survi-
vors volunteer work benefits the mental health system, providing unpaid training for
mental health professionals, or creates alternative supports for other survivors’ (Landry,
2017: 1451). Such under-resourcing and lack of recognition is particularly evident and
impactful in rural areas, leading to isolation:
“Both I and other members have to pay for transport to visit the Association in town and that is
really expensive. However, if I don’t visit regularly, I’d go back to how I was before, when I
didn’t have such services and support in place. It would be far better for there to be similar
Associations across BiH and to make them accessible to everyone”. (Sandra, a Bosniak woman
in her 20s)
Impact of poverty and the broader socio-economic and
political context
Sandra is not alone in highlighting problems caused by insufficient income. Poverty and
the wider socio-economic and political context were highlighted as a key concern for
many participants. Josip, a Bosnian Croat in his 60s said:
“I don’t feel ill nor do I think of myself as mentally ill. I think we live in a catastrophic country,
where you don’t have any rights, and where each service costs a packet. Pensions and all
income is low and you can’t live off of it”.
Ilma, a Bosniak woman also in her 60s, noted how important it is to know one’s rights
and entitlements, particularly as some people have to pay contribution costs for their
medication:
“I lived off this tiny pension for a few years without knowing that, as a mental health patient,
I am also entitled to receive an additional benefit for care and support. I first heard of it from
14 Health 00(0)
my psychiatrist at the CMHC who referred me to a social worker. The process of preparing the
documentation did take a while, but I managed to get that additional benefit. . . I should have
been told about this when they released me from the hospital, but they didn’t. I tell this to
everyone, and I help out when and if necessary, because I know we all need the money. The
meds I take weren’t on the essential list until a while ago [a national list of medicines that
don’t require a patient charge for them], so I used to pay 60-70BAM pcm for them (cca
30-35EUR)”.
Money is an essential need for people who experience distress (Landry, 2017), and yet
issues of poverty and class are frequently lacking from analysis of people’s experiences
of distress (Fabris, 2013). Beaupert and Brosnan (2021: 128) stress that Mad Studies
should focus on and spotlight this ‘inseparable’ link between oppression due to distress
and ‘life-threatening injustices of poverty, inadequate social welfare, capitalism, occupa-
tion or war’.
Protecting the right to self-determination
Much like Ilma, other people we spoke to highlighted the importance of accessing infor-
mation and advice on their rights and entitlements. This wasn’t solely an issue related to
poverty alleviation, but also ensuring that people feel heard, and their wishes adhered to.
Those who experienced compulsory hospitalisations were troubled by their experiences
and a lack of choice and control over their lives while hospitalised. Džana, a Bosniak
woman in her 40s noted: ‘The worst thing is that they don’t allow me to keep my hijab
in hospital, saying that I may hang or strangle myself with it. That is such a humiliation’.
Lee (2013: 113), in their analysis of systemic violence endured by the Canadian psychi-
atric survivors, notes how ‘human agency has been compromised by [such] denial of
self-determination in mental health care’.
This extends and reverberates into family life, too. Much as they are a source of
support, families can also be a source of oppression or surveillance in the name of
care. Reflecting on her relationship with her son, Nejla, a Bosniak woman in her 50s,
explains:
“I would love for my son to no longer live in constant tension, watching my behaviour and
thinking, each time there is a change in my behaviour, good or bad, that he has to take me to the
Hospital! I think that the psychiatrists made him paranoid that he has a duty to hospitalise me
every few months. I feel so much better since I’ve been going to the Association. . .. but he still
observes me constantly and it really bugs me. . .I really feel good now and I don’t see a reason
why I should go into the Hospital again”.
Experiences by Nejla and others suggest that support people require should ensure pro-
tection to their right to self-determination, enshrined in the United Nations Convention
on the Rights of Persons with Disabilities (CRPD). Beaupert and Brosnan (2021: 128)
stress, however, that instruments such as the CRPD can have limitations in ‘countries
where there is deep socio-economic inequality and governments may not recognise the
status of people with psychosocial disabilities as rights holders’.
Maglajlic et al. 15
Conclusion
While not generalisable, the findings spotlight experiential knowledge and the rela-
tionality of distress caused by political conflict in BiH. The core of both the study
origins and the findings are relationships. Participants stressed the need for long-standing,
mutual, inter-dependent, respectful relationships with families, friends, people with sim-
ilar experiences and their communities. Experiences by the people who took part in the
study also highlight social causes and consequences of distress, and the prevailing impact
of poverty and injustice on their lives. While community-based and non-coercive profes-
sional mental health support was valued by all participants, their concerns and fears sug-
gest that human rights support and advocacy should be made equally accessible.
Participants stressed that they want to have agency in their lives and for their right to
self-determination to be respected.
Placing these findings in dialogue with other experiential knowledge of distress
suggests that experiences and support needs are similar – regardless of whether they
are experienced in conflict/post-conflict contexts or not. This is interesting and rel-
evant as the specialist mental health services are promoted as valuable and necessary
to meet the needs of people who experienced political conflict (Kamali et al., 2020;
WHO, 2008). Our findings do suggest that non-coercive, community-based support
is valued. They also suggest importance of social justice and human rights initia-
tives, as well as poverty alleviation, led by people with experiential knowledge of
distress.
Our findings also suggest that there is a need for further exploration of people’s expe-
riences of distress based on their gender. While most of the female participants didn’t
start their own families, a few of the men did. Experiences in rural areas are equally
important to explore. Considering experiences in our team and rising concerns in litera-
ture (Rose and Kalathil, 2019), there is also a need for clearer and more elaborate guide-
lines for funding and ethical co-production between survivor researchers and self-declared
or carefully identified social science allies. Fortunately, the research team will be able to
work on this. Thanks to additional funding by the British Academy, we are able to extend
our work to other parts of BiH.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship,
and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/
or publication of this article: from the Independent Social Research Foundation, Flexible Grant for
Small Groups (FG5).
ORCID iD
Reima Ana Maglajlic https://orcid.org/0000-0002-4884-9586
16 Health 00(0)
Notes
1. For details, see: http://www.mentalnozdravlje.ba/the-mental-health-context-in-bosnia-and-
herzegovina.
2. One of the two administrative entities in BiH created following the Dayton Peace Accords,
with responsibilities for the organisation of health services.
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Author biographies
Reima Ana Maglajlić is Senior Lecturer in Social Work at the University of Sussex, United
Kingdom. Prior to her academic career and since she worked as a researcher and activist on the
reform of health and social care in Bosnia and Herzegovina and elsewhere in South-East Europe.
Halida Vejzagić is an indepent survivor researcher and human rights activist. She also works as
a care worker.
Jasmin Palata is an activist in survivor-run initiatives in mental health and independent researcher.
China Mills is Senior Lecturer in Public Health and Programme Director of the Masters of Public
Health (MPH) at City, University of London. China’s research traces different facets of the global
mental health assemblages.
