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The Trouble of Stigma in the Age of Datacation: Screening for
Mental Health Issues in a Refugee Camp in Jordan
Lars Rune Christensen and Hasib Ahsan
Business IT Department, IT-University of Copenhagen, Copenhagen, Denmark
ABSTRACT
Drawing on ethnographic eldwork in a refugee camp in Jordan, this article
investigates how datacation through digital screening technologies helps
shape mental health issues in the face of widespread uneasiness about the
subject, especially among the intended beneciaries. We argue that the
refugees and their health care providers face a dilemma: on the one hand,
the desire to make mental health issues visible and clinically actionable
through datacation and, on the other hand, the wish to keep mental health
issues out of public view to avoid potential stigma.
KEYWORDS
Data; datafication; Jordan;
mental health; refugees;
stigma
It was a sunny winter morning in the Zaatari refugee camp in Northern Jordan. There we were talking
to Rodaina, a community health worker, and accompanying her as she walked from house to house on
her daily route as part of a program to screen refugees for mental health issues. The sheet metal plates
of the caravan made a rustling sound as Rodaina knocked on the door. Nothing at first, then some
muffled sounds of shuffling feet, and finally, after a few minutes of waiting, the caravan door cracked
open. A male face looked out at us with squinting eyes blinded by the intense sunlight. In a low voice,
Rodaina explained her purpose, screening the family for mental health issues, and was in one staccato
sentence from the man in the doorway denied entrance to the home. We walked away, “I will try again
tomorrow afternoon when he is out of the house. Maybe his wife will speak to me . . . I think she will,”
Rodaina said, as we walked toward another caravan on her list. Every day resembled the next in the
work of Rodaina and her colleagues. The refugees were hesitant to take advantage of the mental health
care service.
Later that day, with better luck, we were granted access to a different caravan on the outskirts of the
camp. Seated on a neatly arranged row of cushions, our hosts, a couple in their late forties, offered us
coffee. Rodaina’s voice was smooth and her smile friendly as she clarified to the couple, refugees from
northern Syria, that “we do this for everybody . . . we have not selected you . we also visit your
neighbors.” The woman had asked: “Why are you coming to us? Nobody here is mad.” Rodaina
explained that the service was offered to everybody. Rodaina also told her, “you are an amazing
woman, and you are an amazing man, we want to help you become the best version of yourselves.” We
left after the family had been screened by Rodaina using her tablet computer, and the wife had been
found to show symptoms of mental health issues. Rodaina had asked the women 20 questions, read
from the tablet computer. Based on her answers, an algorithm had recommended referring the women
to a camp clinic for further diagnostics and possibly treatment. As we walked outside again on the
dusty path between the caravans, Rodaina said: “it is hard to make them stop worrying so much about
CONTACT Lars Rune Christensen Lrc@itu.dk Department of Business IT, REFLACT Research Group, Technologies in Practice
Research Group, IT-University of Copenhagen, Rued Langaardsvej 7, Copenhagen 2300, Denmark.
Media teaser: Screening for mental health issues in a refugee camp comes with a dilemma: between the clinical desire to make
mental health issues visible and actionable through datafication and the need to keep mental health issues hidden and out of the
view of the community to avoid social ills such as stigma.
MEDICAL ANTHROPOLOGY
https://doi.org/10.1080/01459740.2023.2250060
© 2023 Taylor & Francis Group, LLC
what their neighbors think and understand that you do not have to be ‘mad’ to have mental health
issues.”
On closer inspection, this view of a mental health intervention in a refugee camp indicates
how datafication – the quantification of qualitative phenomena – through digital tools partly
shapes what constitutes mental health issues in humanitarian crisis in the face of widespread
uneasiness toward the subject, especially among the intended beneficiaries. Rather than having
severe mental disorders, or “madness” as some refugees may call it, as the criteria for interven-
tion and treatment, the application on the tablet computer used by Rodaina and her colleagues
defines the criteria for intervention in “mental health issues” differently. Based on the SRQ-20,
a twenty-item questionnaire developed by the World Health Organization (WHO), the digital
screening tool allows quantification of the symptoms of mental health issues on a scale from 1–
20. A score of seven or above is the cutoff point for referral to treatment. The screening
application may be said to alter the threshold for the recognition of mental health issues in
the sense that it picks up on what “Western” medicine may label “depression” or “anxiety,”
symptoms of which are often ignored or pushed aside by the refugees as trivial or
inconsequential.
People with mental health issues have long suffered adverse effects for themselves and their
families. That includes some of the 83,000 Syrian refugees living in the Zaatari refugee camp in
Jordan. Identifying those challenged by poor mental health readily and accurately, and providing
treatment, in such a humanitarian crisis may contribute to the wellbeing of those in need. Yet, while
screening for mental health issues and offering treatment may be sound from a healthcare perspective,
it may also draw (unwanted) attention and spark social embarrassment. For example, beneficiaries
may worry that neighbors overhear the screening process, see them entering a clinic, or talk about
them behind their backs. They may imagine that being associated with mental health care will be
detrimental to their social standing in the camp.
The concerns that we focus on in this article are twofold. On the one hand, we are interested in the
refugee’s mental health, how it is made visible and actionable in a clinical context through a process of
datafication, and on the other hand, we are interested in the perils of that same visibility and the social
concerns and risks it entails for the refugees. The refugees and their health care providers may be said
to face a dilemma; between the clinical desire to make mental health issues visible and actionable
through a screening process and the need to keep mental health issues hidden and out of the view of
the community to avoid social ills. The health care providers who designed and executed the service,
made several moves to mitigate this dilemma: one strategy was to brand the service in terms of “quality
of life” rather than explicitly talk of mental health issues or mental health disorders, another was to use
group sessions with socially safe content as an introduction to the service in an attempt to normalize
its use, and a third was to help the refugees hide that they were receiving counseling for mental health
issues. The refugees for their part also had strategies to hide their involvement with the mental health
care service and were in general very careful about who they chose to speak with about it.
Medical anthropology and related research areas have long studied stigma, datafication, and
numeration – albeit somewhat disjointedly. Previous anthropological studies engaging with stigma
and its potential consequences have focused, for example, on how COVID-19 related stigma impacts
medical staff in Mexico City (Muñoz Martínez 2021), the stigmatization of HIV-positive women in
Japan (Cullinane 2007), the effects of AIDS-related stigma on access to health care services in Thailand
(Songwathana and Manderson 2001), and social exclusion for people with leprosy in India (Staples
2004, 2014). Such studies are part of a long tradition and have often been influenced by the seminal
writings of Goffman (1963). According to Goffman (1963:3), stigma can be described as
a phenomenon whereby an individual with an attribute, such as mental health issues, is deeply
discredited by their community as a result of that attribute. Goffman (1963) deemed stigma a social
process by which peers’ reaction spoils the “normal” identity of the stigmatized, potentially leading to
rejection, isolation, and even ostracism. Notably, the concept of stigma itself has been made the object
of critique. For example, Staples (2011b:96) asks whether or not the concept of stigma is a useful
2L. R. CHRISTENSEN AND H. AHSAN
analytical category at all, as it may risk glossing over local and contextually defined terms and nuances.
Stigma is best understood as dynamic, relational, and not existing in a vacuum separate from its social
setting (White 2009). Furthermore, the act of stigmatization may depend on the relative status of the
people involved as the dynamics of individual and group identity matter (Staples 2011a:120).
Datafication and numeration studies in anthropology and elsewhere have been occupied with the
nature and implications of the quantification of qualitative aspects of life and health (see e.g. Day et al.
2014; Ruckenstein and Dow Schüll 2017). For example, studies have focused on the monitoring of
patients with chronic illness (Bagge-Petersen 2023), self-making through fitness self-tracking
(Petersen et al. 2022), the ramifications of health data production to inform malaria control in
Senegal (Tichenor 2017), and knowing about AIDS in Africa through numbers (Biruk 2012). These
studies highlight, among other things, how datafication may make a phenomenon not only visible and
actionable (Day et al. 2014; Ruckenstein and Dow Schüll 2017) but may “make up” a phenomenon, in
the first place, rather than merely bring attention to it (Lippert and Verran 2018). The underlying
insight is that datafication, even if governed by rational-scientific standards, is always enveloped and
constituted in its social relations (Adams 2016; Biruk 2018; Bossen 2019; Lupton et al. 2022). The
product of datafication, e.g. numbers, rather than being somehow “objective,” are entities that reflect
their social and epistemological contexts (Biruk 2012; Christensen and Ahsan 2022; Daston and
Galison 2007).
The nexus of stigma and datafication is good to think with, we contend, to better understand how
datafication may render a phenomenon such as mental health visible through numeration for clinical
purposes only to create what may be unwanted attention for the intended beneficiaries within their
communities. A juxtaposition of datafication and stigma, then, frames this article.
The study and its methods
This article is based on a collaborative research project conducted by a Jordanian-Danish research
team in the Zaatari refugee camp in North-Eastern Jordan. The camp opened in July 2012 and is home
to around 83,000 people, who fled the Daraa Governorate in South-West Syria during the civil war
which erupted in March 2011. The larger project screened 6146 of the Syrian refugees, in their caravan
homes in the camp, for mental health issues and referred 1373 for further diagnostics and treatment at
a camp clinic. This is a referral rate of 22.3%.
1
Moreover, the dropout rate was close to 62%. That is,
more than six out of ten refugees referred to diagnostics and treatment at the camp clinic did not show
up for their appointment with the psychologists or declined to book an appointment in the first place.
2
The project was staffed by an outreach team, a psychologist, and administrators. The project staff
were supported by a suite of digital tools, including a handheld application based on the WHO SRQ-20
used by the outreach team to screen the refugees in their homes, a clinical module used by the
psychologist, and an administrative module to register patients, handle referrals, and for management
purposes. Having had a presence in the camp for more than 10 years, since the camp opened in
July 2012, the local NGO that staffed the project had continuously provided a variety of health care
services to the refugees, and for example, ran the central maternity clinic in addition to being part of
this project.
The outreach team included eight Jordanians in their mid-to-late twenties with psychology, social
work, or sociology degrees. The team was gender balanced. Each team member, also known as
a “community health worker,” was assigned to screen a particular subsection of the camp. The SRQ
20-questions, according to WHO standards (Beusenberg and Orley 1994), are: (1) Do you often have
headaches? (2) Is your appetite poor? (3) Do you sleep badly? (4) Are you easily frightened? (5) Do
your hands shake? (6) Do you feel nervous, tense, or worried? (7) Is your digestion poor? (8) Do you
have trouble thinking clearly? (9) Do you feel unhappy? (10) Do you cry more than usual? (11) Do you
find it difficult to enjoy your daily activities? (12) Do you find it difficult to make decisions? (13) Is
your daily work suffering? (14) Are you unable to play a useful part in life? (15) Have you lost interest
in things? (16) Do you feel that you are a worthless person? (17) Has the thought of ending your life
MEDICAL ANTHROPOLOGY 3
been on your mind? (18) Do you feel tired all the time? (19) Do you have uncomfortable feelings in
your stomach? (20) Are you easily tired? The questions are to be answered with “yes” or “no.” If the
subject responds “yes” to seven or more questions, that person is referred to a clinic for further
evaluation. The tool used by the community health workers, then, was for screening purposes, rather
than for diagnostics. This aligns with the intentions of the SRQ-20 as envisioned by the World Health
Organization (Beusenberg and Orley 1994). The questions in the digital tool were shown in both
English and Arabic. Initially (in the preparation phase) the tool and the translation from English to
Arabic were discussed and tested with members of the refugee community working with the outreach
team. In addition, the community health workers received training in questioning techniques. The
training took the form of workshops with the presence of community health workers, psychologists,
program organizers, refugee community members, the authors, and additional project staff.
Psychologists received the referrals made by the outreach team at a camp clinic where the
diagnostics and treatment process for each referred refugee often involved multiple sessions.
Further diagnostics (if needed) could include visits to specialists outside the camp. At the camp clinic,
the psychologist had access to the screening data for the referrals assigned to them and at times made
active use of the data in their diagnostic and treatment process. The digital health infrastructure also
supported the psychologist in recording further patient data and taking notes related to their session
with the refugees. Furthermore, the administrative support team used the infrastructure to schedule
counseling sessions and keep track of the households screened, the households that had declined, and
the households yet to be approached. The two psychologists, their assistants, and the administrative
staff were all Jordanian.
We base this article on ethnographic fieldwork among the community health workers, the
psychologists, and the administrative staff of the project, as well as its intended beneficiaries, the
refugees. The fieldwork took place, on six separate occasions, between October 2021 and March 2023.
We interviewed our interlocutors, talked with them, and followed them around with an interest in
their practices. We interviewed the eight community health workers and observed them and their
interactions as they provided services in the homes of the refugees. In six cases, we met with
community health workers and joined them on their house calls on more than one occasion. In
addition, we followed the work of psychologists and administrative staff in the Zaatari camp through
observations and interviews. Furthermore, we conducted ethnographic interviews with 12 Syrian
refugees on their experience with the project and their understanding of mental health issues.
Although we took care to present ourselves as researchers, our interlocutors at times seemed to
absorb us, the ethnographers, into a broad humanitarian aid worker category. This was evident, for
example, when people living in the camp asked us for advice, or even favors, in terms of them
relocating to Europe or the US. We were not qualified to give such advice, nor in a position to grant
favors. However, this tendency to conflate us with officials was not uniform, and most refugees seemed
happy merely to share their experiences and stories with us – the interested outsiders. We experienced
an urgency, among many of our refugee interlocutors, that we share their stories lest they be forgotten
by the world. Many were generous with their time and redirected us to others they recommended we
talk to. Note that the names of the informants have been changed for anonymity throughout the
article.
Turning mental health into a global health issue
The campaign slogan for World Mental Health Day on October 10
th
2021, was “mental health care for
all: let’s make it a reality” (WHO 2021b). This day was organized by the World Health Organization
(WHO) and epitomizes the efforts made in recent years by international organizations, advocate
groups, NGOs, and scholars to turn mental health into a global health issue. Advocates have forcefully
pointed to the critical role that mental health care can play in achieving equality of health care and
pointed out that many mental health conditions can be effectively treated at relatively low cost. In
2019, the WHO launched the WHO Special Initiative for Mental Health (2019–2023): Universal
4L. R. CHRISTENSEN AND H. AHSAN
Health Coverage for Mental Health, advocating for access to quality and affordable care for
100 million people (Ghebreyesus 2019). The inclusion of mental health in the Sustainable
Development Goals may further illustrate that the efforts to put mental health on the world agenda
have had some measure of success (UN 2022). However, despite progress in some areas, a gap between
needs and access to mental health care persists, especially in humanitarian emergencies. Furthermore,
people with mental health conditions may often experience human rights violations, discrimination,
and stigma (Ghebreyesus 2019).
Historically, humanitarian assistance in refugee camps has often overlooked and not prioritized the
need to incorporate mental health and psychosocial support services in early response efforts. Basic
shelter, water, food, sanitation, hygiene, and (somatic) health care has often been prioritized. This is
despite, critics say, an overwhelming body of evidence pointing to heightened vulnerability among
displaced communities to mental health conditions. Having already faced stressful events in their
countries of origin, such as violence and loss, refugees may encounter additional stressors of poverty,
discrimination, overcrowding, disconnection from their previous sources of social support, and
resource insecurity in refugee settings (Christensen et al. 2020). However, in humanitarian response,
the ripples of the efforts to turn mental health into a world health issue can now be felt. Providing
mental health support in humanitarian emergencies is now increasingly seen as integral to the broader
health system and response (WHO 2021a). Mental health may now be monitored via digital screening
and information services. The World Health Organization promote digital technologies to support
such services, including the Mental Health Gap Action Programme Intervention Guide (e-mhGAP). It
was designed to be used by doctors, nurses, and other health workers using algorithms to support
clinical decision-making in relation to mental health (Saxena 2016).
In our case, the applied digital screening tool is paralleled in other humanitarian response settings
as well. The digital screening tool used in our case was not the e-mhGAP. Rather it was a custom-made
tool based on another WHO standard that shared a common rationale with the e-mhGAP i.e. “to make
mental health care for all a reality.” As noted earlier, the realities of these technologies are complicated,
especially in the face of stigma. That their use may have consequences beyond the immediate service
provision, we will turn to next.
Mental health care in the face of stigma
Our group approached the camp from the North, reaching first the main gates of the Zaatari camp,
a flat expanse of desert dotted with caravans encircled by a perimeter of fences and earth embank-
ments. The guards at the gate slowly inspected our documents and waved us through. The car
continued to drive along the northern side of the camp, where the NGOs have the bulk of their
support structures; offices, warehouses, and buildings that served both as clinics and community
centers. This was our destination. On the other side of the camp perimeter, hidden by the earth
embankment serving as a wall, the local villages lay in the distance. Here and there, we saw human
shapes making their way across the embankment and out of the camp. These were “day laborers”
looking to work for the local farmers, we were told. The car came to a halt outside a stone bulwark, and
we entered grounds with two buildings where we could hear a voice streaming out from one to our left.
In this building, a man and a woman, both in their 30s, wearing the characteristic logo
emblazed khaki-vests of humanitarian aid workers, were hosting an event for local residents of
the refugee camp to introduce them to a health care service that was new to the camp. The man,
Ahmed, a psychologist, was standing in front of a large placard reading, “Syrian mHealth –
Increasing Quality of Life for Syrian Refugees in Jordan.” He spoke into a microphone welcom-
ing about 12 refugees, all men, to the workshop. After their welcome, he told the group that
“feeling low,” “having trouble sleeping,” “worrying about the future,” “having headaches,” and
“feeling without purpose” is normal in Zaatari. “You cannot be blamed for feeling bad occa-
sionally,” Ahmed said to the refugees in front of him, “it is normal.” The men were sitting with
arms crossed, shifting their weight somewhat uncomfortably about on the hard seats of their
MEDICAL ANTHROPOLOGY 5
wooden chairs. Ahmed continued, “you are amazing men – we want to help you become the
best versions of yourselves.” “No one, including me, is always feeling good,” Ahmed continued,
“we all have our ups and downs.” During the session the refugees were asked to share their
families’ dreams for the future and the ways in which they could help their family members
achieve their dreams. “You can help yourself by focusing on helping others,” Ahmed said. Terms
such as “mental health issues,” and labels such as “depression” and “anxiety” were absent from
the conversations of the event. Ahmed later told us that this introduction to the NGO’s mental
health service was meant to normalize what was perceived as potentially stigmatizing for the
refugees to be a part of. The event concluded with more advice on how to cope with camp life.
As the participants exited, they were each handed a blanket and a solar-powered lantern.
Standing outside afterward, Shema, part of the psychologist’s team, remarked, “ . . . we cannot
help them if they run away from us.”
Later that week, we accompanied Shema and Ahmed as they hosted yet another workshop. This
time, the circle of chairs only seated women. “They worry about what other people think and don’t
want to go here alone if they can help it,” Shema said. While some women had arrived alone, others
had entered the building in pairs or small groups of two or three, neighbors, family members, and
friends. At the workshop, the women were encouraged to share and to understand that their
predicament was not unusual. In fact, it was “normal,” and what was also normal was the weight of
such things on one’s mind. “That you sometimes feel sad about life here,” Shema said, echoing the
messages at the men’s session, “makes you like most people here in this room and in this camp . . . the
important thing is that you focus on your family that needs you.” Shema punctuated the verbal
interaction with breathing techniques sessions to give the refugees “a modicum of control over their
anxiety and moods,” as she later told us, and to install the idea in the refugees that anxiety and mood
swings can be controlled to some extent. “We try to make them see that they have some control and
influence on their lives,” Shema said.
The psychologists were aware that stigma might spell trouble for the viability of their mental health
care intervention. They told us that the intended beneficiaries might decline to attend workshops and
counseling out of concerns for their reputation. This was in part what motivated the normalization
discourse, and the other part was a conviction, we were told, that mental health issues in a refugee
camp are “nothing out of the ordinary.” Thus a complex of reasons was at play in mitigating stigma, to
avoid spoiling, using a term from Goffman (1963:2), the “social identity” of people using the mental
health care service.
Later that week, in the NGOs office, Shema and her colleague told us that the community health
workers, going door-to-door, had now reached close to 2,000 home screenings. The referral rate
was hovering around 23%. “We have so many referrals,” Ahmed said, “we cannot see them all
individually.” He was browsing through the screening records of the patients referred to him,
moving the cursor from one name to the next and clicking methodically through their records. He
turned around in his chair and grabbed a cup of coffee on the table behind him. “Those above
seven [the cutoff point] but below 10, we will have to offer group sessions only,” Ahmed said, “We
don’t have the capacity for more. But those with a score above 10 we see can individually for
counseling.”
Receiving counseling and living under pressure
Our ethnographic material indicated a subtle presence of scientific norms and the authority of data in
the configuration of the mental health of the refugees as a concern. The screening scores were of
consequence in the clinical process, in the social life of the camp, and to the refugees who had their
inner-lives quantified. An SRQ-20 score above seven may not only lead the refugee toward health care
through referral, and to worries about social embarrassment, but may also charge their inner-lives
with a dilemma. To clarify, the dilemma from the perspective of the refugees was this: do I let my
mental health issues become visible and actionable in a clinical context to get better but run the risk of
6L. R. CHRISTENSEN AND H. AHSAN
social embarrassment in the camp, or do I hide my mental health issues from others but risk
a deterioration of my health at the peril of myself and my family.
Farah
Farah, a 40-year-old refugee from the Damascus area, told us that attending a counseling
session could put her at risk. “Maybe one of my neighbors saw me coming into this building
with you and then think that I am mad . . . I could lose my job [she worked with a local
NGO].” Asked if she knows anybody that attends individual counseling sessions like herself,
Farah replied, “I know of only one woman that like me sees a counselor here in the camp . . .
I think people keep it secret.”
3
Farah confided in us that she had not told her husband about
her sessions with Shema, her counselor. “I tell him that I am going shopping, or for a health
checkup, or something,” Farah said, “he is happier not knowing.” The uneasiness surrounding
mental health care was projected onto her intimate relations in Farah’s case, rather than only
the community.
“Had I known my life would be like this,” Farah said, “then I would never have married my
husband. He is a good man, but he cannot handle life here. He thinks too much, even more than I do.
He gets very angry with our children.” Three years before our first meeting with her, Farah and her
husband fled the war in Syria. “Our life was simple and beautiful in Syria,” Farah said, “The war
destroyed us.” Following the kidnapping of her father and brother, Farah and her husband fled to
Jordan. “They would put dead bodies and people in the same van,” Farah said, “we stared at dead
bodies for hours.” Farah told us that she had dreamed of a car and going on a road trip with her family
in Syria.
Our first conversation with Farah took place in a midwife’s office in the camp, a small room
with two posters on child care in bright colors adorning the white walls. Sitting in an
upholstered chair away from home, Farah seemed in no rush and determined to tell us her
story. She was 40, she told us, with a son of 19 and another older son in Germany. “He traveled
through Belarus and then Poland,” she said, “we had to borrow money from a friend so he could
go.” Farah got a phone call in mid-sentence with a message to pick up her grandchild from
a clinic at the other end of the camp. Farah’s daughter-in-law, married to her eldest son, lived
with them as her husband was in Germany. “I am exhausted by 9 o’clock” . . . Shema [the
psychologist] has told me to see if I can include her [her daughter-in-law] more in the cooking
and cleaning,” Farah said, referring to a conversation she had with Shema during individual
counseling.
As a child, Farah’s youngest son had been involved in a domestic accident with boiling water. The
recommended plastic surgery cost more than they could afford, and her family had applied through
the UNHCR to go to Europe, hoping for better healthcare and a future beyond the camp. The
application was still pending. “I think too much, I know, my mind is restless and jumps from
money, to my children, to my husband . . . ,” Farah put her head in her hands and leaned forward
in the chair, sat up again and said, “My father, he did not allow me to play with other children when
I was a child . . . I cannot understand why . . . and he would hit me.” Farah later told us that her
counselor had encouraged her to see separate issues, rather than one big problem, to understand that
there are different kinds of problems that each require their unique solution. “I am really grateful that
Shema is here,” Farah said, “I have had a really high number [screening score], and they sent me
to her.”
Farah returned to the subject of her husband and his mother, Farah’s mother-in-law was also
living with them in their caravan in the camp. “She has always been a kind woman,” Farah said,
“and we want to take good care of her in her old age, but she has nothing to do all day and can
hardly move about, so she gets bored and interferes.” Farah’s husband helped with his mother but
did not take responsibility for domestic work. Farah told us with a tired smile how she had to wash
daily as the family does not have a change of clothes for each day. Her counselor, Farah told us,
had described to her how she could create space, small islands, for herself, through breathing
MEDICAL ANTHROPOLOGY 7
exercises and to be aware of overthinking. “Shema really tries to help me,” Farah said, “and she is
right that staying awake all night thinking will not help my sons, our granddaughter, or any of us.
Only God can, inshallah.”
Ibrahim
“I have been cursed by my neighbor,” Ibrahim said, “had I known I would never had taken the coffee he
offered me.” Wide-eyed, Ibrahim continued, “my tongue has felt heavy ever since I drank his coffee and
I can hardly talk now.” About two years ago Ibrahim had been offered coffee and cigarettes enjoying the
hospitality of one of his neighbors in the camp. He now considered himself cursed due to the coffee
provided. Needless to say, he did not talk to his neighbor any more. Ibrahim’s caravan was cold here in
the middle of winter, and the pillows we were sitting on, drinking Ibrahim’s coffee, had a shine to its
fabric from years of wear. His eyes rested on the carpeted floor in front of him, and the sound of muted
street noise entered the room when the conversation paused with the occasional van or donkey-car
passing. Ibrahim searched for words. “Even the Quran is heavy to read,” Ibrahim said, “but I prefer herbs
and the reading of Quran verses to all the doctors’ medicine.” Ibrahim had visited a clinic where he had
been told by a doctor that sometimes a person may only think that they are cursed, but they are not, and
that medicine can help. Ibrahim did not go to see that doctor anymore. He was now attending religious
education with the local Imam. He was getting test grades “in the 90%” he told us, which made him feel
good and accomplished. He would like to be a religious educator himself someday, he confided in us.
Ibrahim also said to us that he had lost his sense of smell due to his neighbor’s curse.
The following day, Ibrahim showed us a series of sketches made by his teenage son. They were
pencil drawings of faces from popular culture or depicted landscapes dissimilar to the flat desert we
were presently in. Lakes and wooden hills were reoccurring motifs. We complimented his son’s talent
and were told that he was trying to make a business of selling the drawings in the camp, so far, with
limited financial success. “People have pictures on their phones,” Ibrahim explained, “it’s hard to
compete with that.” The future of his children was on Ibrahim’s mind. He had four children, all in
their late teens or older, and none were married. “So many people in the camp have bad marriages,”
Ibrahim told us, “teenagers get married while they have short-term jobs [with NGOs in the camp] and
have no way of supporting their family when the contract expires.” Ibrahim would like to help his two
sons to go to Europe “to have better lives there and make a living.” He worried that if they did go to
Europe, he and his wife would miss them too much.
We revisited Ibrahim a few months later. His situation, he said, was mostly the same. He brought up the
curse he was under again and blamed the camp, including his neighbor, for his troubles. Living in the camp,
Ibrahim told us, was painful for him. He felt that he lived under constant pressure. He had no stable income
and could not see a clear path for his children to prosper. This made him restless and short-tempered. He
regretted that he sometimes scolded his wife and children, and he was tired of the constant conflicts about
the lack of money. “They [his family members] all want things . . . clothes, shoes, and phones . . . that I can’t
possibly afford right now,” he said. “So you see,” Ibrahim said, “our family does not have a happy life here as
we had in Syria. I think it affects us a lot.” Asked if he would consider going to a “group workshop” now that
he had been referred [Ibrahim’s screening score was above seven] his answer was, “I don’t think so. What is
that going to help?” he paused and continued, “I tell my wife that she can go to the clinic, but let me be. If you
want to go, then go, but at least you can let me be in peace,” Ibrahim paused and then continued, “She may
be right because I have a high number [high screening score], the nurse told me [the community health
worker], but I don’t see what they can do about it . . . can they [the NGO] give me a good job . . . or get us
back our house in Syria?” Ibrahim paused and offered us more coffee. “You know,” he said after lighting
a cigarette, “I also don’t want people here to think that I am some kind of mad man.”
We were repeatedly told by our interlocutors that others in the camp could not be trusted to
distinguish between for example “someone being depressed” and “someone being mad.” However, our
interlocutors themselves did not confuse depression and “madness” in terms of mental health
challenges. Our interlocutors projected, we think, the idea that others conflated them while they
themselves did not. This lack of trust in others’ ability to draw meaningful distinctions between the
8L. R. CHRISTENSEN AND H. AHSAN
short-lived and the chronic, may help explain the fright that surrounded even lesser cases of anxiety or
depression in the camp. What this says about sociality in the camp is a broad and far-reaching
question. We merely point out that a lack of faith in the judgment of others seems to promote or be
part of the idiom of stigma in the camp.
Back to screening
Rodaina and Mohammed, the community health workers, reflected on the refugees’ attitudes toward
mental health. We were back with them, walking door-to-door, screening the refugees for mental
health issues. After Mohammed graduated from the local university about three years ago with
a degree in psychology, he found work on a project related to the psychosocial wellbeing of men in
the camp. That was before joining the outreach team. When we asked him about the help-seeking
practices of the men in the camp he said, “In the past, I have only rarely seen the men of the camp seek
help for their mental health troubles. Perhaps they . . . if they seek help, they will present their [mental
health] problem as somehow physical.”
The literature on Syrian refugees in Jordan and elsewhere suggests that barriers to help-seeking for
mental health issues include shame, concerns about confidentiality and reputation, and language and
conceptual barriers (e.g. Bawadi et al. 2022). “We must go to them, Rodaina said. “They will rarely
come to us because they look at mental health differently.” Rodaina and Mohammed had witnessed
numerous times how the refugees tended to equate mental health issues with severe mental health
disorders. “They think you have to be mad, Mohammed said.”
To accommodate local sentiment toward mental health, the community health workers, such as
Rodaina and Mohammed, had to be careful about their presentation of self and the service when they
approached the caravans in their districts. “When they open the door, I will say that I am responsible
for this area and must ensure they are all right. Usually, they let me in, but not always,” Mohammed
said. Early in the project, it had been decided, at the management level after consultation with the
community health workers and community leaders, to brand the project “Quality of Life Survey and
Intervention,” and, if possible, avoid using words such as “mental health,” “depression,” “anxiety,” and
so on when introducing the service to the refugees. This move was made to avoid stigma. “I am always
careful to tell them that this is a service for everyone and that we are working to improve their quality
of life and the lives of their neighbors and friends,” Rodaina said. It also helps with access. The NGO
organizing the outreach teams also provided general health services, such as pre-natal and post-natal
care in the camp. “They know our logo . . . and that helps,” Mohammed said, “otherwise I am not sure
they would let us in . . . well, perhaps they would, but not so many.”
Once inside a caravan, the work of getting the refugee to be screened “as alone as possible”
started. Most of the time, their family members would be nearby as the caravans are quite small
compared to the six to ten people typically living and sleeping there. “They will be told to go and
make some coffee, bring water, or play outside,” Rodaina said. The children and adolescents are
easy to get out of earshot, we observed, it was more complicated with the other adults in the
household. “Sure, it is not ideal, but we have to make it work,” Mohammed said. This work of
creating a situation of approximated discretion in the caravans during the screenings was impor-
tant not only for the privacy of the individual refugee but also to mitigate worries about social
embarrassment and potential stigma.
As mentioned above, the digital screening tool allowed for quantification of the symptoms of
mental health issues on a scale from one to twenty – where a score of seven or above is the cutoff point
for referral to treatment. This algorithm arguably changed the recognition of mental health issues.
That is, the SRQ-20 on which the algorithm is based has been designed to be sensitive to what
“Western” medicine may label “depression” or “anxiety,” symptoms of which may be ignored or
pushed aside by the refugees.
The datafication of their mental health partly depended on the ability and will of the refugees to be
somewhat candid about their state of mind and answer in a straight-forward “yes” or “no” manner to
MEDICAL ANTHROPOLOGY 9
the questions of the screening tool. However, this was not always the case – the community health
workers were sometimes called on to do some interpretive work. Rodaina explained: “A lot of the time,
people don’t give a straight answer. They will say things like ‘thank God for everything’ – does that
mean ‘yes’ or ‘no’?” . . . also, sometimes some people will just say “no” to all of the questions to get me
out of their house. They may be smiling and polite but just not interested.”
Mohammed gave a similar account of how some refugees told him stories from their lives in detail,
despite being instructed to provide binary “yes” or “no” answers and left him to summarize and ask the
respondent – “that means ‘yes,’ right?” The datafication of the mental health by way of the screening
tool was, in this case, a process that at times required interpretive work on the part of those doing the
screenings – i.e. community health workers such as Rodaina and Mohammed. The two community
health workers were reporting on tensions between the need of refugees to narrate their experiences
and the binary “yes/no” format of the WHO SRQ-20. Rodaina’s experience of not being given “a
straight answer” and Mohammed’s efforts to confirm his conversions from narrative to binary answers
were revelatory, we think, of the constraints of the SRQ-20 format. Counting symptoms of mental
health issues, from 1–20, at times translating from narrative to binary form, required what Martin and
Lynch (2009) have called the work of categorical judgment. To count a refugee’s answer as a “yes” or
a “no” is to make it countable, and at times to reduce it, to a member of one of those two categories to
accommodate the logic of the SRQ-20. The reductive dimensions of the screening process, we think,
hints at not only the constraints of the SRQ-20 but also the broader limits of the act of quantification.
Having said that, one may acknowledge the tool-like qualities of the SRQ-20, its purpose-built design,
crafted by the WHO to produce referrals to be followed by a diagnostic process that may be richer, in
qualitative terms, than the preceding screening process.
In the screening process, categorical judgment (counting as “yes” or “no”) precedes the algorithmic
processing (adding up the number of “yes” answers to compute a score). Judging what counts as
a “yes” or a “no” in the screening process may be non-trivial, as reported by Rodaina and Mohammed.
Nonetheless, the assignment of a numerical value to represent the mental health of a refugee at the end
of the home screening generates a tenuous “object stability” in the sense that for a time, the mental
health condition of the refugee is fixed to travel in the larger camp health care infrastructure as a score
below, equal to, or above the cutoff point of seven.
On a critical note, one may see the mental health service, the screening efforts and the therapy
offered, as medicalization of social problems. Radicalizing the argument, one may even speak of
a “regime of mental health” and imposing Western biomedical ideology. Indeed, scholars have argued
that rather than dealing with the systemic inequalities and the problems that camp life can produce,
service providers may medicalize the refugees’ very real problems and thus obscure the root problems
of refugee existence (Fennig and Denov 2018). This is an apt critique as long as it is also recognized
that even though addressing mental health may not deal with the systemic inequalities of refugee life it
may ease pain and suffering for some, break apathy, and help regain some measure of agency.
A holistic approach is required: that is, mental health issues (structurally induced or not) must be
addressed alongside efforts to improve living conditions, livelihoods, and the prospects of the refugees
in general (see also Fennig and Denov 2018).
Discussion and concluding remarks
Returning to the slogan for Mental Health Day 2021: “Mental health care for all: let’s make it a reality,”
we may note that the realities of mental health care in the age of datafication are complicated,
especially in the face of stigma. It is important to recognize, we think, that mental health interventions
using digital tools may come with a dilemma: between visibility and privacy, between clinically
actionable screening data and the desire to keep mental health issues out of public view to avoid
potential stigma. To do good and avoid harm, protecting the wellbeing, safety, and dignity of all
participants, is perhaps the most fundamental ethical principle of any intervention (Dearden 2012;
Iphofen 2013). In this respect, there is a delicate balancing act between doing good through mental
10 L. R. CHRISTENSEN AND H. AHSAN
health care (including screening and treatment) and doing no harm by not exposing the intended
beneficiaries to worries and fears related to stigmatization. Does the (potential) good of treatment risk
being offset by the mental pressures associated with worries and concerns about stigmatization?
The screening process and associated datafication of the mental health of the refugees reshuffled, in
our case, what counted as mental health issues in two interrelated ways. First, it arguably altered the
threshold for recognizing mental health issues. That is, the SRQ-20 that the algorithm is based on, was
designed to be sensitive to mental health issues such as depression and anxiety associated with the
stressors of camp life, symptoms of which, broadly speaking, tended to be trivialized by the refugees.
Second, it had a subtle influence on the inner lives of the refugees such as Farah and Ibrahim. That is,
having one’s inner-life quantified, such that referral begins above the cutoff point of seven, may change
one’s self-perception. Furthermore, the referred refugee faces a dilemma between, trusting the screen-
ing score and attending counseling, and keeping their mental health out of public view to avoid shame.
These two “reshufflings,” may be interrelated. That is, the threshold for the recognition of widespread
mental health issues such as depression and anxiety inherent in the SRQ-20 that is used in the clinical
process in the camp may influence the self-perception and inner-life of those refugees that internalize
this (SRQ-20) threshold and their personal screening scores.
Furthermore, the clinical process rested on the screening scores that were a product of the use of the
SRQ-20. That is, the refugees’ answers to the 20 questions and the community health workers’
interpretation of those answers, e.g. their categorical judgment or reduction of those answers into
“yes” or “no” replies, produced the scores. In this view, data such as numerical screening scores are social
entities that may travel across settings (see also Ruckenstein and Dow Schüll 2017), from the screening
situation in the caravans to the computer screen of the psychologist in the camp clinic office. To the
psychologists, the circumstances in which data was produced are partly hidden as they do not have first-
hand experience of the screening situation due to the division of labor within the health care team. The
data, then, is recontextualized. Arguably, the epistemic virtues of “objective” knowledge production such
as abstraction, timelessness, and reproducibility (see Daston and Galison 2007) influence the way that
the screening scores were used for triage by the psychologists – due to resource constraints those
refugees with scores above seven but below ten were in group session, while those at ten or above where
offered individual counseling. Broadly speaking, the project relied on the re-contextualization of data,
i.e. the numbers’ ability to travel across contexts, from the caravan to the clinic, and receive (new)
meaning as they were interpreted along the way for referral, triage, and treatment.
Also, to reiterate, our ethnographic material indicates that the idea of stigma that surrounded the
clinical process played a key role in the formation of the attitudes toward mental health care in the
camp. While our ethnography readily showed concerns related to (potential) stigmatization, out-
right cases of spoiled identity were hard to clearly identify in our material. That is, the idea of stigma
seemed to have a stronger presence in the Zaatari camp than actual cases of spoiled identity. The
trouble of stigma in Zaatari, we think, was related not least to the concerns, apprehensions, and fears
it installed in people. This is not to say that stigmatization was merely a mirage. As noted, the
imaginaries of stigma were real and had real effects on the actions of healthcare providers and
refugees alike.
In our ethnographic material there is nothing to indicate that the service providers had anything
but good intentions. Western biomedical thinking, as practiced in this case, may be said to harbor
nothing but good intentions. One point to iterate, then, is precisely that the good intentions of the
mental health service providers, and by extension the Western biomedical approach used, may be
fraught with social peril in the form of stigma for the refugees. Having said that, recognizing the perils,
it is important not to miss that being a recipient of counseling may have its benefits. For example, it
may lift a parent out of apathy so that he or she can give some energy to a child. Herein lies the
beforementioned dilemma.
4
We are currently living in an age where datafication within healthcare will most likely continue to
accelerate and develop for the foreseeable future, and datafication may highlight especially socially
sensitive healthcare issues that may come in the company of stigma. Quantifying mental health may
MEDICAL ANTHROPOLOGY 11
have consequences beyond the clinical process, as we have seen. For medical anthropology, this may
foster future research into the consequences of datafication in the context of health care, and perhaps
especially so concerning phenomena that may be especially socially sensitive such as not only mental
health but also HIV, AIDS, and leprosy, to mention a few.
Notes
1. In comparison, one can expect a referral rate using the SRQ-20 of about 10% in a non-refugee population.
2. This substantial dropout rate was originally part of what prompted our interest in the theme of stigma concerning
the mental health care service. Also, it is arguably part of what makes the theme relevant to providers of such
services in humanitarian settings.
3. In contrast to the group sessions, the individual counseling sessions were much less public.
4. Importantly, it is not our intention with this article to discourage mental health interventions in refugee crisis. On
the contrary, rather, we hope that this article, and its arguments, may sensitize anthropologists and mental health
practitioners alike to the potential dilemmas inherent to mental health services for the benefit of the intended
recipients. Historically, humanitarian assistance in refugee camps have often overlooked and not prioritized the
need to incorporate mental health care in early response efforts. This needs to be addressed in a concerned and
careful manner, given the socially sensitive nature of mental health issues.
Acknowledgments
This study was conducted in collaboration with Jordan Health Aid Society - International (JHASi - an NGO registered in
Bangladesh). We would like to warmly thank Dr. Yaroup Al-Ajlouni president of JHASi, Mr. Mo’nes Qudah, and all the JHASi
staff for this project. Also, we would like to thank Mrs. Lisbeth Breinholt for her invaluable support. In addition, we gratefully
acknowledge the great contributions of Mr. Jari Kickbusch. Importantly, we would like to thank the Syrian refugees in Zaatari
participating in the study for their contributions and for letting us take up so much of their time. For very helpful comments on
earlier versions of this article, we are grateful to Dr. James Staples, Dr. Rebecca Marsland, Dr. Victoria Team, and three
anonymous Medical Anthropology reviewers. Finally, note that the field work (and the project at large) was conducted in
accordance with The Danish Code of Conduct for Research Integrity (Ministry of Higher Education 2014) and the JHASi
(NGO) code of Ethics. It was approved by relevant institutional bodies at the IT-University of Copenhagen and JHASi.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Funding
This research was funded by the Novo Nordisk Foundation [grant no. NNF21SH0069701] and in this regard we would
like to sincerely acknowledge the important contribution and support of Mr. Anders Bager and Professor Flemming
Konradsen.
Notes on contributors
Lars Rune Christensen is Associate Professor at the Department of Business IT, Technologies in Practice research group,
REFLACT research group, IT-University of Copenhagen. His current research, carried out in Jordan and Togo, focuses
on the intersections between humanitarian intervention and digital technologies within healthcare spheres. http://orcid.
org/0000-0001-7204-465X
Hasib Ahsan is Postdoctoral Researcher at the Department of Business IT, Technologies in Practice, ISDI research
group, IT-University of Copenhagen. His current research is carried out in Bangladesh, Jordan and Cambodia, mainly
on ICT for Development (ICT4D), with a focus on climate change and ICT, digital health, and ICT in humanitarian
crisis in the Global South. https://orcid.org/0000-0002-7812-2652
12 L. R. CHRISTENSEN AND H. AHSAN
ORCID
Lars Rune Christensen http://orcid.org/0000-0001-7204-465X
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