Amyoplasia: Emergence In the Age of Youtube and Social Media

Theoretical Background and research questions/hypothesis: This study takes a qualitative approach to explore how individuals with children afflicted by amyoplasia, a rare congenital crippling disease, employ YouTube and personal video narratives to share experiences and information. YouTube has allowed families of children with amyoplasia to act as agents of change for other families new to the disability, eliciting a change in attitudes and perceptions about an unusual and often misunderstood condition. Questions such as the following will be explored: Do meeting people through YouTube with the same concerns of an unfamiliar, rarely publicized, serious chronic illness make them feel more or less isolated? What types of information is being sought? This study proposes YouTube as a more effective method than written or oral patient stories on rare chronic illnesses. Existing research by sociologist Arthur Frank and Dr. Rita Charon on "narrative medicine" supports the value of illness narratives in patient treatment.

Methods: A phenomenal approach is used to analyze YouTube personal videos about amyoplasia. Videos, based on YouTube’s algorithm of top searches with key words of “amyoplasia” and “arthrogryposis”, are examined with a dual approach of narrative analysis and visual enquiry. Arthur Frank’s dialogical narrative analysis, incorporating the life-grid method, is applied to identify illness narratives through genre categorization of restitution, chaos, or quest. Genre analysis allows for a comparison of the various experiences of those directly or indirectly afflicted with amyoplasia. Bodily gestures and manner are examined following Goffman’s concepts on representation. Stimson’s concept of visual ethnography is applied to explore the influence of visual space or setting, such as home or institution.

Results: The results of this study will support a growing body of research evidence on the positive impact of integrating social media, specifically YouTube videos, in patient support and health communication of rare chronic illnesses. Amyoplasia, a form of arthrogryposis, is particularly frustrating to families because the information surrounding it is not readily available to the lay public. YouTube video illness narratives can provide families of children with amyoplasia the opportunity to convey information and act as an authority to provide comfort and support.

Conclusions: It is hoped that the continuation of video narratives about amyoplasia will set a precedent for social media in health communication to support afflicted families and bridge the gaps between these families and the general public. In addition, clinicians and caretakers of patients with amyoplasia, should integrate YouTube as part of narrative practice, not to provide facts or truth about amyoplasia, but as a means of gaining deeper understanding of what a patient and family experiences to help in their treatment and support.

Implications for research and/or practice: YouTube is an emerging medium and further phenomenological studies can reinforce the importance of a humanistic perspective in the treatment and communication of rare chronic illnesses as part of a new medical paradigm. YouTube video illness narratives can also be an effective element of an integrated marketing campaign for healthcare organizations as it employs a “human connection” that elicits compassion to ultimately create awareness and educate a specific target audience.