An Interpretative Phenomenological Analysis of the role of social media in the lives of young men with neuromuscular conditions

Background Young men with Duchenne Muscular Dystrophy (DMD) are now living longer due to advancements in medical technologies such as developments in support for breathing and gastronomy feeding. However, daily life for young men with DMD can be a challenge, particularly as they enter into adulthood, where services and provision may change and are not always suited to their needs. Anecdotal evidence has illuminated the capacity of social media as an alternate lifeworld for young men with DMD. Few studies however, have explored how social media is experienced by young men with DMD. Aim To explore the lived experience of social media from the perspective of young men with DMD. Method An Interpretative Phenomenological Analysis was undertaken, involving sequential in depth interviewing with eight young men aged 18-28 with DMD. Novel methods of data collection were used, including the use of video gaming to support engagement during the interview. Findings Three superordinate themes were identified: ‘Existence outside social media; navigating offline lifeworld’, ‘Transcending into an alternate reality, life within video gaming’ and ‘The meaning of social networking platforms, blogs, and spaces’. The lived experience of social media appeared to be grounded in the interplay between the offline and online existences of participants. Video gaming provided an alternate reality for many participants to immerse themselves, and to engage in experiences unavailable ‘offline’. Social networking sites, and blogs facilitated a sense of group identity, belonging, and autonomy over decisions related to their care. Conclusion The meaning of social media to young men with DMD appears at its most harmonious when it is experienced as an activity for enjoyment, connectivity, discovery, and occasional refuge The findings of the study have implications both for social media development, and for the care provided to young men with DMD.