Gibson F, Hibbins S, Grew T, Morgan S, Pearce S, Stark D, Fern L A
London South Bank University, London, UK.
Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
Psychooncology. 2016 Nov;25(11):1317-1323. doi: 10.1002/pon.4061. Epub 2016 Jan 8.
Young people with cancer exhibit unique needs. During a time of normal physical and psychological change, multiple disease and treatment-related symptoms cause short and long-term physical and psychosocial effects. Little is known about how young people cope with the impact of cancer and its treatment on daily routines and their strategies to manage the challenges of cancer and treatments. We aimed to determine how young people describe these challenges through a social media site.
Using the principles of virtual ethnography and watching videos on a social media site we gathered data from young people describing their cancer experience. Qualitative content analysis was employed to analyse and interpret the narrative from longitudinal 'video diaries' by 18 young people equating to 156 films and 27 h and 49 min of recording. Themes were described then organized and clustered into typologies grouping commonalities across themes.
Four typologies emerged reflective of the cancer trajectory: treatment and relenting side effects, rehabilitation and getting on with life, relapse, facing more treatment and coming to terms with dying.
This study confirms the need for young people to strive towards normality and creating a new normal, even where uncertainty prevailed. Strategies young people used to gain mastery over their illness and the types of stories they choose to tell provide the focus of the main narrative. Social Media sites can be examined as a source of data, to supplement or instead of more traditional routes of data collection known to be practically challenging with this population. Copyright © 2016 John Wiley & Sons, Ltd.
患癌青少年有独特的需求。在身体和心理正常变化的时期，多种与疾病及治疗相关的症状会造成短期和长期的身体及心理社会影响。对于青少年如何应对癌症及其治疗对日常生活的影响，以及他们应对癌症和治疗挑战的策略，我们知之甚少。我们旨在通过一个社交媒体网站确定青少年如何描述这些挑战。
利用虚拟民族志原则并在一个社交媒体网站上观看视频，我们收集了青少年描述其癌症经历的数据。采用定性内容分析法，对18名青少年的纵向“视频日记”中的叙述进行分析和解读，这些“视频日记”相当于156部影片，记录时长为27小时49分钟。描述主题，然后进行组织并聚类成类型，将各主题中的共性归为一组。
出现了四种反映癌症病程的类型：治疗及持续的副作用、康复与回归生活、复发、面临更多治疗以及接受死亡。
本研究证实，即使存在不确定性，青少年仍需要努力回归正常并创造新的常态。青少年用来掌控自身疾病的策略以及他们选择讲述的故事类型是主要叙述的重点。社交媒体网站可作为一种数据来源进行研究，以补充或替代更传统的数据收集途径，而传统途径在该人群中实际操作具有挑战性。版权所有© 2016约翰·威利父子有限公司。
