School of Healthcare, University of Leeds, Leeds, UK.
Health Sciences Department, Martin House Research Centre, University of York, York, UK.
Palliat Med. 2023 Jul;37(7):1016-1024. doi: 10.1177/02692163231172246. Epub 2023 May 2.
Young men with Duchenne Muscular Dystrophy benefit from palliative care that supports their psychosocial needs. Acknowledging the sub-cultures they engage with can support their wellbeing. Anecdotal reports suggest video gaming is a sub-culture engaged with by young men with Duchenne Muscular Dystrophy.
To explore the lived experience of video gaming from the perspective of young men with Duchenne Muscular Dystrophy.
Interpretative Phenomenological Analysis approach involving in-depth interviews using a topic guide that focused on social media broadly, with reference to video gaming. Sequential interviewing was undertaken to support participation regarding fatigue and tiredness, symptoms of Duchenne Muscular Dystrophy.
SETTING/PARTICIPANTS: Participants were purposefully recruited from a hospice in the North of England. Twitter was used to support recruitment. Eight young men with Duchenne Muscular Dystrophy were recruited to the study.
Five themes were developed; 'gamer as a shared and accepted identity', 'an existential and bodily escapism', 'introspection through video gaming', 'video gaming as a release' and 'when life gives you few choices-video game'. Motivations for engagement with video gaming are diverse and reflective of the situated perspectives of young men with Duchenne Muscular Dystrophy.
An awareness of the popular sub-cultures that young men with Duchenne Muscular Dystrophy engage with is key to building a therapeutic alliance, establishing rapport and recognising personhood in interactions between professionals and persons in palliative care settings. This study highlights the value of video gaming, offering professionals valuable insight into its placement in the daily lives of young men with Duchenne Muscular Dystrophy.
患有杜氏肌营养不良症的年轻男性受益于姑息治疗，这种治疗支持他们的心理社会需求。承认他们所参与的亚文化可以支持他们的幸福感。传闻报告表明，视频游戏是患有杜氏肌营养不良症的年轻男性所参与的一种亚文化。
从患有杜氏肌营养不良症的年轻男性的角度探讨视频游戏的生活体验。
采用解释现象学分析方法，通过使用主题指南进行深入访谈，该指南广泛关注社交媒体，并参考视频游戏。采用顺序访谈的方式，以支持关于疲劳和疲倦、杜氏肌营养不良症症状的参与。
地点/参与者：参与者是从英格兰北部的一家临终关怀医院中有意招募的。使用 Twitter 来支持招募。研究招募了 8 名患有杜氏肌营养不良症的年轻男性。
提出了五个主题：“游戏者作为共同和可接受的身份”、“存在主义和身体逃避主义”、“通过视频游戏进行内省”、“视频游戏作为一种释放”和“当生活给你很少的选择时-视频游戏”。参与视频游戏的动机是多种多样的，反映了患有杜氏肌营养不良症的年轻男性的情境观点。
了解患有杜氏肌营养不良症的年轻男性所参与的流行亚文化是建立治疗联盟、建立融洽关系和在姑息治疗环境中专业人员和人员之间的互动中承认人性的关键。这项研究强调了视频游戏的价值，为专业人员提供了宝贵的见解，了解其在患有杜氏肌营养不良症的年轻男性日常生活中的地位。
