What Arts-and-Health Practices Teach Us About Participation, Re-presentation, and Risk

Abstract

This article explores the implications of risk in arts-and-health collaborations that represent illness narratives for the purpose of engaging the public. Based on an artist's, bioengineer's, and health psychologist's reflections from pediatric and adult group workshop practice settings, this article canvasses 8 dimensions of risk that deserve ethical attention.Collaborative Arts-and-Health Projects Art in its myriad forms has the potential to bring a different perspective and language to the illness experience. Drawing on Virginia Woolf's meditation "On Being Ill," Rebecca Solnit reflects on her own experience of illness: "When you are well, your own body is a sealed country into which you need not explore far, but when you are unwell, there is no denying that you are made up of organs and fluids and chemistry and that the mechanisms by which your body operates are not invincible." 1 Artists, writers, and philosophers not only can draw on their creativity to articulate their own reflections on disease but also enable patients to articulate their particular experiences of disease. 2,3,4 These articulations often occur in a sensitive and vulnerable space-an interface between the "personal" and the "medical"-that can present risks and ethical issues requiring careful navigation.From a theoretical standpoint, one model linking the arts with health has highlighted how different components of the artistic experience (eg, evoking emotions, stimulating the imagination, social interaction) can lead to psychological, physiological, behavioral, and social responses that are in turn linked to promotion of health and better prevention, management, or even treatment of disease. 4 To realize these benefits, artistic work requires careful attention to different relationships. Interdisciplinary collaborations can underpin new forms of problem solving and person-centered research and thereby an epistemological shift in arts-based research and arts-based interdisciplinary collaborations. 5 There is a growing evidence base of arts-based research and arts practices in a medical context. 6 As discussed elsewhere by 3 of the authors and colleagues, 7 this work must consider several important elements, including:(1) the health care setting itself, (2) aspects of production management, (3) relations

Piloting creative engagement strategies to explore themes of parenthood with fathers

“…As previously argued, this kind of participatory creative work also presents possible challenges (24). Alongside possible ethical issues relating to privacy and risks of identification, which are mitigated by ensuring appropriate consenting, participants' wellbeing is a key aspect as the creative exploration of feelings and experiences (including potentially unexpectedly painful ones) can represent "dangerous emotional terrain" (37).…”

“…All fathers, except one who was separated, were married to the mother of their child. In light of their prior engagement in this research, an ethical framework was already in place, however additional project considerations included the public dissemination of participants' final works (24) and the opportunities and challenges of digital platforms (25). Participants were invited to join individual artist-led sessions, conducted remotely, to elaborate creatively their recent experience of fatherhood.…”