Lived Experience Perspectives on Self-Injury

Abstract Although there have been many important gains in our understanding of self-injury over the past couple of decades, the majority of this research has emerged from the perspective of clinicians and researchers, overlooking the important insights provided by individuals who have lived experience of nonsuicidal self-injury (NSSI). To date, research has typically asked participants about their experiences rather than involving them as active participants in the research. While this has yielded a better understanding of NSSI, recovery, disclosure, and stigma, giving individuals with lived NSSI experience a more active role in research may inform what and how we study NSSI and may also benefit participants themselves (e.g., by fostering greater insight or feelings of contribution). There is a moral imperative to involve individuals with lived experience at all stages of research, as well as in clinical care and advocacy settings. In doing so, this chapter acknowledges the ethical challenges that may emerge, primarily protection of vulnerable persons and peoples and inclusion/representation of diverse experiences. These challenges, however, should not be a barrier to centering lived experience perspectives but, rather, should be acknowledged in order to improve the quality of NSSI research, treatment approaches, and advocacy initiatives.