Pre-Engagement as Method: An EmbodiMap TM VR Experience to Explore Lived Experience of People from South Sudanese Refugee Background

Introduction

Researchers in the field of refugee studies have highlighted issues to be addressed in responding to the challenges of unmet mental and emotional needs of refugee populations. (Long, 2014, p. 1) discusses the need to rethink ‘durable’ solutions for refugees’ needs, and to premise refugees as the experts of their own lived experience. This requires researchers to take ‘one down’ positions of support in working to best facilitate individuals and groups to come up with creative solutions that work for them. It also means building capacity among health-care providers and scientists to understand and respond to the health needs of refugees (Marano et al., 2016), the need for an ‘all hands-on deck’ approach that is locally coordinated (Hayes et al., 2016, p. 1) and the need for ‘sustained and creative engagement’ (Milner, 2014, p. 11).

Given the unaddressed needs, we as researchers and practitioners in the field are called to face the immensity of such challenges in innovative and co-constructive ways. Arts-based approaches to the refugee mental health crisis have been acknowledged as having transformative potential. They involve going beyond what is experienced or expressed, while speaking to it and simultaneously opening up space for more adaptive ideas (Jones, 2018, p. 290; Lederach, 2005, p. 38). Ayindo (2008, p. 185) similarly argues that arts approaches have contributed to the depth of learning that is essential in response to the painful experiences of conflict and mass violence where intervention requires more holistic approaches. Because arts are part of everyday life, they ‘bear potential to fully challenge our imagination in search for creative, viable and sustainable alternatives’ (Ayindo, 2008, p. 186).

To address such challenges, we used EmbodiMap a Virtual Reality (VR) tool and immersive sensate experience which enables users to explore their subjective experiences by focusing on sensations felt in the body to gain insights into their emotional and mental wellbeing. While VR technologies are often perceived as the antithesis of mindful and wellbeing practices, they are increasingly being used to successfully support reflective experiences and cultivate empathy (Papadopoulos et al., 2021). The EmbodiMap experience is designed to support participants in engaging with their thoughts and emotions, how they are experienced in their body, and how they make meaning from these experiences.

We co-developed EmbodiMap with a range of people identifying as experiencing trauma, anxiety, and stress, and adapted the EmbodiMap experience to suit the needs of the many different participants. Using a ‘pre-engagement approach’ a small number of people from potential participant groups use the prototype tool and experience protocols. This pre-engagement approach allows them to engage with the EmbodiMap experience and be ‘hands on’ with the technology, before providing insights into how psychosocial engagements mediated through creative practices might be further adapted, developed, and codesigned to address specific community needs and to facilitate meaningful experiences. The pre-engagement approach, pre-empted a more sustained or broader community engagement, allowing for primary engagement to be co-designed from the outset and the VR tool to be modified and customised for optimal experience and impact.

This pre-engagement approach was used with a small group of South Sudanese refugee community leaders in Sydney, who underwent personal experiences of EmbodiMap before exploring how they could envisage it being used to support issues in their broader community, such as in relation to youth suicide and resettlement challenges. The aim was to understand how currently available support for the mental and emotional wellbeing of the refugee population can be further supported through psychosocial engagements using purposefully developed tools.

Creative Engagement and the Refugee Voice

Arts-based approaches are particularly crucial in the refugee mental health field as they have potential to address the complexity of the “refugee voice” (Jones, 2018; Sigona, 2014, p. 10). This is important if we are to arrive at and practice innovative measures to face the challenge of unmet mental and emotional health needs. The issue with the refugee voice is fourfold. Firstly, there is the silencing of the refugees’ narratives. This involves refugees being spoken for instead of speaking for themselves and allowing only certain versions of their narratives to emerge while others disappear (Sigona, 2014). Secondly, there is the constricting of the refugee voice to one singular voice. This involves the humanitarian, academic and media discourses adopting one representation of the refugee which heavily relies on the image of victimhood and vulnerability, and which ‘makes Western “experts” and support organisations the only trustworthy voice to speak for refugees and about the experience of forced displacement…’ (Sigona, 2014, p. 4). Thirdly, there is the scrutinising of the refugee voice, for example by immigration officials, which involves concerns about believability. This is especially important if the refugees have experienced trauma, given the ways in which trauma manifests non-verbally and non-sequentially and in ways that are reduced by Western science-practitioner models (Bracken, 2003; Van der Kolk, 2014). The scrutiny is evident in the rigorous process enacted by immigration representatives, of dissecting and analysing the refugees’ narrative for ‘internal coherence and external consistency’ to ‘prove’ it trustworthy enough to warrant granting asylum (Sigona, 2014, pp. 6–7). Lastly, there is the destruction of the refugee voice. The refugees may have experienced trauma to a degree that may render their ability to recount their ‘experiences’ mute (Herman, 1997; Levine, 2010; Porges, 2007). As Scarry (1985, p. 4) points out, the physical pain of torture ‘does not simply resist language but actively destroys it’.

Thus, approaches that do not rely heavily on spoken words but enable articulation of felt experience by creative means can open up alternative avenues for expression, potentially allowing for deeper reflection and providing insights not available through other means. Creative means of expression can provide refugee survivors with alternative personal ways of understanding and articulating their experiences, in contrast to the clinical and medical terminology that may be inadvertently assumed as be the only means of describing mental and physical distress or wellbeing (Bennett et al., Froggett, Kenning, Manley, & Muller, 2019; Boydell, Gladstone, Volpe, Allemang, & Stasiulis, 2012; Chamberlain et al., 2018; Fraser & Sayah, 2011). The EmbodiMap experience and tool is an example of these creative means of expression.

Cultural Understandings of Mental Health

Researchers have found it important to note that refugees’ understandings of mental health differ within and across cultures, and to keep in mind that refugees are not a homogeneous group (Byrow et al., 2019; May et al., 2014; Sullivan et al., 2020). In their study investigating differences in mental health knowledge and beliefs between participants from the Iraqi and Sudanese refugee communities, and Australian-born individuals, in Sydney, May et al. (2014) found that a more complex definition of what constituted mental health among these communities was called for, involving ‘differences in the labelling and conceptualisation of specific disorders’ (p. 765). Indeed, it has been demonstrated that culture can extensively affect the perception, experience and presentation of depressive symptoms for instance, the labels these symptoms receive, and the individuals’ treatment choices and pathways to help (Fozdar, 2009; Kleinman, 1977; Tilbury, 2007; Wierzbicka, 1986).

The medicalization of mental health, and the search for cultural equivalence of emotion terms to describe a person’s mental state has been problematic in some refugee contexts. Studies examining the understanding and expression of depression among East African communities in Australia (Fozdar, 2009; Fozdar & Banki, 2017; Fozdar & Rapley, 2004; Tilbury, 2007) found that there were no words directly translatable to ‘depression’ in any of the local languages (Amharic, Tigrigna, Somali, Sudanese Arabic and other dialects), and that the closest terms described anger, anxiety, self-pity, constant worry, grief, discomfort, fright, unhappiness, and sadness. These words did not denote an abnormal mental state as in the Western medical model. Terms for abnormal mental states could only be translated simply as ‘madness’ or ‘craziness’.

The medical framing of the mental health state of refugees can be problematic as it is presented to them as ‘the truth’ of their condition thus silencing other possibilities (Bracken, 2003, p. 4). And as Tilbury (2007, p. 454) argues,

It universalises an emotion state, rather than recognising its cultural situatedness; it individualises an emotion state, rather than recognising its social embeddedness; it rationalises an individualistic solution to the problem through medication or individual counselling, rather than recognising structural and social causes of despair…

Indeed, other studies have also found that refugees may not see value of the medical framing of their mental health state, and may prefer help that addresses their social and practical needs (Fozdar, 2009; Savic et al., 2016; Sullivan et al., 2020). For instance, while violence and trauma may have an ongoing impact on many individuals and communities from refugee backgrounds, individuals and communities may not self-identify as trauma ‘victims’ or survivors, may prioritise other areas of their lives that need focus, or may have strategies in place for self-management. This calls for taking what Sullivan et al. (2020, p. 22) call a “culturally responsive” or “critically conscious” approach to intervention, and the identification and mobilisation of resources that are based on different cultural approaches to mental health.

The pre-engagement method and co-design approach are akin to the ‘Two-Eyed Seeing’ research framework which Bartlett et al. (2012) propose for use in research with Indigenous communities, using her collaborative research experience with the First Nations community of Ewipkek in Canada. ‘Two-eyed seeing’ is a guiding principle that was introduced to the academic community by M’ikmaq Elders Albert and Murdena Marshall in Nova Scotia, Canada, meaning ‘learning to see from one eye with the strengths of Indigenous knowledges and ways of knowing, and from the other eye with the strengths of Western knowledges and ways of knowing’ (Bartlett et al., 2012, p. 335). The ‘Two-Eyed Seeing’ framework is thus a collaboration between the researcher and the community, embracing research in a way that privileges the community's ways of knowing over the researcher's. Adopting this framework hence assists us to create a project that is specific and appropriate in design to the community of South Sudanese refugees that we are working with.

EmbodiMap: Virtual Reality Tool and Experience

The EmbodiMap experience and VR tool, developed by fEEL (felt Experience and Empathy Lab) at University of New South Wales (UNSW) is designed as a qualitative research method and a creative experience. It has a set of protocols designed to enable the creative experience to potentially lead to therapeutic outcomes. The EmbodiMap experience is not just the use of the VR technology. It includes protocols for psychosocial engagement, through discussion and semi structured interviews, between participants and researchers or facilitators to establish a space that is meaningful, and safe for participants. It also establishes whether participants are available to share their experiences, context and understandings of felt sensations and emotions, including how they label and interpret these feelings and sensations. The protocols allow time for deep reflection on emotions and sensations after engaging with the technology, and time for feedback on the experience and technology itself.

An important aspect of EmbodiMap is to foster stress-free engagement with the technology and promote a comfortable space that potentially allows for self-revelatory experiences. Therefore, protocols including ‘onboarding’ and ‘offboarding’ engagements are used for acquainting participants with the technology, and safety and hygiene requirements, how to use the technology, and what to expect on entering the virtual space. To use the technology, the participant is invited to wear a portable untethered Oculus Quest VR headset to enter the virtual space—this choice being because they are lighter than earlier versions and cable-free. This makes the VR less off-putting for those not experienced with VR, and more appropriate for experiences that engage with emotion. Similarly, using hand-tracking technologies allows participants to draw using their hands (rather than using VR controllers) and may feel more intuitive.

Participants can make virtual marks in the space, using a range of colours which appear on each fingertip and can be selected by simply touching the required colour with the thumb. Participants can create life-size avatar bodies, pose them, walk around and step inside them. Participants are encouraged to draw onto the figures, noticing any sensations in their body and mapping them onto the avatar figure. Participants are invited to observe and reflect on the drawings they have created. (Figures 1 and 2).OPEN IN VIEWER

OPEN IN VIEWER

Figure 2.

Participants draw with hands, selecting colours from their finger tips.

EmbodiMap can be experienced as a guided meditation where a voice-over encourages participants to slow down and focus on feelings and sensations, and as they become aware of sensations in their body, they can draw them on to the avatars. The experience can be self-directed as participants engage with avatar bodies without direction exploring the affordances of the tool. Furthermore, EmbodiMap can become a shared experience with peers, researchers or therapists donning a VR headset and entering the same virtual space.

The EmbodiMap tool was developed using iterative ‘bottom up’, participatory design approaches working with immersive media designers, artists, and psychologists and people who identify as experiencing mental health concerns. They provided feedback about the ease of use of the tool, the appropriateness of the environment, and the overall creative and/or therapeutic experience. Through this process it became evident that the VR tool needed to be adaptable for the needs of different communities and individuals. To support subjective experience a range of variables were developed in the VR tool, to be selected by the participant or researcher or therapist working with them. When entering the virtual space participants select virtual landscapes or semi-enclosed rooms. The environment can be light, bright and open or dark and enclosed.

EmbodiMap Rationale

EmbodiMap was developed to explore sensate and somatic responses to stress and/or anxiety or trauma and to help participants visualise the felt experience of autonomic nervous system (ANS) activation. It draws principally on two areas of practice: somatic psychotherapy (including Sensorimotor Psychotherapy) (Ogden et al., 2006, 2015), and body mapping (De Jager, Tewson, & Boydell, 2016). Traditional body mapping involves ‘… the process of creating body-maps using drawing, painting or other art-based techniques to visually represent aspects of people’s lives, their bodies and the world they live in’ (Gastaldo et al., 2012, p. 5). It originated in South Africa as a therapeutic tool for women living with HIV (MacGregor, 2009). As a method, body mapping has been used for sharing stories; research; co-production; political advocacy; as communication; for teaching; examining embodied experience in physical space; in child/adolescent centred methods; and for therapy. Body mapping has been used in the health sciences and as an arts-based approach to health research, bringing awareness to the ways we hold emotion in the body (De Jager et al., 2016; Gastaldo et al., 2012). It is recognised as a powerful means of expressing, through drawing and text, felt experience of the mutually constitutive relationships between sensations in the body, and emotional states (Cregan, 2006; DeMello, 2014; Werbalowksy, 2019 ). Body mapping involves creating a life-size drawing of the body, onto which participants draw, or map, feelings and sensations experienced in their own body. Early explorations of virtual body mapping using proprietary software such as Tilt brush by Google to simply translate the experience through the use of drawing tools and soundscapes that ‘augment and manipulate illustrations’ (Ticho, 2020).

Embodimap refocuses such approaches by privileging engagement with the internal body space, and dynamic engagement. EmbodiMap as a tool effectively transforms the body mapping experience from a two-dimensional drawing process, which often entails symbolic representation (for example, the drawing of specific shapes or images on a 2D body outline on paper) into a physical and virtual experiencing of the body and emotions. Participants enter the virtual space using an untethered VR headset and find themselves in a dynamic relationship with an avatar. Whilst the avatar body appears as a translucent 3D shape with the same proportions as the user, it may also be selectively ‘filled’ with organs or left empty.

EmbodiMap is less focused on illustration than on visualising and registering embodied experience in an immediate and direct way, using the capacity for mark-making through touch, combined with the facility for moving inside the avatar body. The development of EmbodiMap engages with sensorimotor psychotherapy theories in understanding the capacity offered through movement and change of posture, as exemplified in the work of Pat Ogden (Ogden, 2018) who explores ‘movement vocabulary’ to understand how the body is experienced and how posture facilitates shifts in psychosomatic awareness. Using EmbodiMap users can walk around, step inside, pose and re-pose their avatars and potentially inhabit them. By allowing users to experience their physical body in this way, EmbodiMap potentially offers a transformative experience bringing to the fore how emotions are felt and experienced in the body, and so can be used to develop personalised understandings of the body-emotions relationship.

The Pre-Engagement

Discussion and Considerations for Further Engagement

The participants engaged with the EmbodiMap experience while not sure what they would get from it, but keen to explore. It was clear that how this would support their community was front-of-mind throughout. We identified six key aspects of their engagement all of which are to be explored further in the next engagement with this group and in planning for work with their community.

Conclusion

This paper has discussed a pre-engagement method introducing EmbodiMap to a small group of South Sudanese refugees in Sydney with a view to extend the experience further to the broader community. The EmbodiMap tool and experience is a creative approach that potentially offers a transformative experience as participants virtually reach into their bodies and draw or register their immediate or persisting feelings, sensations and emotions. The potential of the tool is being explored to augment other methods that support the mental and emotional wellbeing of people from refugee backgrounds. As an arts-based approach, EmbodiMap provides an innovative alternative to approaches that rely heavily on words, thus helping amplify the participants’ self-expression. This is crucial because oft-times the refugees’ voices are either silenced, constricted, questioned or destroyed altogether through their experiences of war, displacement and resettlement.

The paper also considered cultural understandings of mental health, paying attention to differences in the experiencing, perception, understanding and expression of emotions among the South Sudanese and other groups, the delicate issue of the language of emotions, and the need to identify resources that are based on different cultural approaches to mental health.

The pre-engagement method used with the South Sudanese community members paid attention to the complexity of experiences and to what members would like to prioritise in the engagement. The pre-engagement sought to bring together the community’s knowledge and the researchers’ knowledge to create a collaborative project that is specific and appropriate for the community. The pre-engagement revealed scope for further engagement with the broader community, while adapting to the needs and issues identified. For this community, the development and application of EmbodiMap is likely to be more effective, as it emerged, if these issues are taken into consideration in the adaptation: importance of community and collective engagement, the notion of the cultural embeddedness of trauma, the significance of listening to and appreciating the refugee voice, the importance of safety, and maintaining a critically reflective and culturally responsive attitude through the process. Importantly, the data collected is not only the interviews and the VR experience, but also the entire context of engaging with the community.