Pioneering Virtual Body Mapping: A Methodological Guide for Researchers Using a Health-Affected Population as an Example

Abstract

<i>The rapidity of the COVID-19 pandemic and the ensuing recognition of post-acute sequela of COVID-19 (PASC) or long COVID-19 has created a need to understand the experience of those suffering from this long-term sequela. The purpose of this research was to explore, and uplift lived experiences of patients with long COVID-19. This study had a total sample of 19 participants with long COVID-19 engaged in body mapping, an arts-based research method. Describing the novel virtual adaptations to the body mapping methodology is the focus of this article. The material presented provides researchers with a methodological road map by outlining the virtual adaptations in the preparation and facilitation of the body mapping process, sharing lessons learned in data collection, highlighting considerations for future studies, and summarizing the impact of the findings. </i><i>Virtual body mapping sessions acted as powerful and emotional events where participants showed true vulnerability describing their experiences with COVID-19, their journey as a long hauler, their places of personal strength and courage, and their dreams for the future. Participants were highly engaged and interested in sharing their art with the broader community. </i><i>Virtual body mapping is a novel approach to conducting qualitative research in a unique setting and can provide an opportunity for innovative knowledge dissemination activities. While this method may contribute to increased participation and engagement, it may also present challenges, such as lessened accountability and interaction. </i>

“It’s Like Having an Uncontrolled Situation”: Using Body Maps to Understand the Embodied Experiences of People with Hidradenitis Suppurativa, a Chronic Dermatological Condition

“…Interviews revealed that body maps could be a useful tool in the mental health support of HS patients given their increased risk of depression and suicidality (Patel et al 2020). This reflects research that recommends body mapping in art therapy and other studies that found that body mapping had a therapeutic effect even if therapy was not the intended goal of the study (Santarossa et al 2023;Mayra et al 2022). However, body mapping as potential mental health support was also a limitation in our study.…”

“…Several participants illustrated both their physical symptoms and drew symbols, words, and even poems to capture the nuance of their HS experience beyond the physical body. HS can be both physically and emotionally painful, and visual representations to describe pain align with themes from other body map studies about injuries, chronic illness, and chronic pain (Van Schelven et al 2023;Santarossa et al 2023;Ludlow 2014;Tarr and Thomas 2011). Participants described the deep emotional impacts of HS, including feelings of sadness, isolation, frustration, shame, and missing out on important aspects of life.…”

“…Body mapping has been used globally to understand embodied experiences of health and illness, including in studies on chronic conditions and pain. These include young people with chronic and somatic pain in the Netherlands (Van Schelven et al 2023), impacts of long COVID on people from the U.S. (Santarossa et al 2023), reflections on birthing in India (Mayra et al 2022), experiences of dialysis treatment in Canada (Ludlow 2014), and pain and injury among professional dancers in the United Kingdom (Tarr and Thomas 2011). HS is a chronic health condition with painful physical symptoms that can impact emotional and social outcomes.…”

“…The COVID-19 pandemic impacted in-person research methods and several body mapping studies had to adjust their approaches accordingly. These included mailing materials to participants and hosting the workshops online (Vaughan et al 2022;Santarossa et al 2023) and designing a chatbot that helped participants design a digital body map (Van Schelven et al 2023). To our knowledge, our project is the first to design a body mapping study during the height of the pandemic and adapt the method to a population already living within pandemic-era restrictions.…”

“…She said, "I feel like I am in a prison and someone locked [me] in… and br[oke] the key… Because, um, we don't know how to deal with this, how to control it." Many participants used materials they had available to them at home; the research team did not mail body map materials like in other studies (Vaughan et al 2022;Santarossa et al 2023). As such, several participants used common household items and office supplies like highlighters, pencils, and pens, and thus their color palette to illustrate body maps was more limited.…”