Manning Joseph C, Hemingway Pippa, Redsell Sarah A
School of Health Sciences, Faculty of Medicine and Health Sciences, University of Nottingham, Nottingham, UK.
BMJ Open. 2014 Jan 15;4(1):e004230. doi: 10.1136/bmjopen-2013-004230.
Life-threatening critical illness affects over a quarter of a million children and adolescents (0-18 years old) annually in the USA and the UK. Death from critical illness is rare; however, survivors and their families can be exposed to a complex array of negative physical, psychological and social problems. Currently, within the literature, there is a distinct paucity of child and adolescent survivor self-reports, thus limiting our understanding of how survivors perceive this adversity and subsequently cope and grow in the long-term following their critical illness. This study aims to explore and understand psychosocial well-being and needs of critical illness survivors, 6-20 months post paediatric intensive care admission.
A longitudinal, qualitative approach will provide a platform for a holistic and contextualised exploration of outcomes and mechanisms at an individual level. Up to 80 participants, including 20 childhood critical illness survivors and 60 associated family members or health professionals/teachers, will be recruited. Three interviews, 7-9 weeks apart, will be conducted with critical illness survivors, allowing for the exploration of psychosocial well-being over time. A single interview will be conducted with the other participants enabling the exploration of contextual information and how psychosocial well-being may inter-relate between critical illness survivors and themselves. A 'tool box' of qualitative methods (semi-structured interviews, draw and tell, photo-elicitation, graphic-elicitation) will be used to collect data. Narrative analysis and pattern matching will be used to identify emergent themes across participants.
This study will provide an insight and understanding of participants' experiences and perspectives of surviving critical illness in the long term with specific relation to their psychosocial well-being. Multiple methods will be used to ensure that the findings are effectively disseminated to service users, clinicians, policy and academic audiences. The study has full ethical approval from the East Midlands Research Ethics Committee and has received National Health Service (NHS) governance clearance.
在美国和英国，每年有超过25万儿童和青少年（0至18岁）受到危及生命的重症疾病影响。因重症疾病导致的死亡较为罕见；然而，幸存者及其家人可能会面临一系列复杂的负面身体、心理和社会问题。目前，在文献中，儿童和青少年幸存者的自我报告明显匮乏，这限制了我们对幸存者如何看待这种逆境以及随后在重症疾病后的长期应对和成长情况的理解。本研究旨在探讨和了解儿科重症监护入院后6至20个月的重症疾病幸存者的心理社会福祉和需求。
纵向定性研究方法将为在个体层面全面且情境化地探索结果及机制提供一个平台。将招募多达80名参与者，包括20名儿童重症疾病幸存者以及60名相关家庭成员或健康专业人员/教师。将对重症疾病幸存者进行三次间隔7至9周的访谈，以便随着时间推移探索心理社会福祉。将对其他参与者进行一次访谈，以探索背景信息以及重症疾病幸存者与他们自身之间心理社会福祉可能存在的相互关系。将使用一套定性方法（半结构化访谈、绘图讲述、照片引发、图形引发）来收集数据。叙事分析和模式匹配将用于识别参与者之间出现的主题。
本研究将深入了解参与者长期从重症疾病中幸存下来的经历和观点，特别是与他们的心理社会福祉相关的方面。将使用多种方法确保研究结果有效地传播给服务使用者、临床医生、政策制定者和学术受众。该研究已获得东米德兰兹研究伦理委员会的全面伦理批准，并已获得国民保健服务（NHS）管理许可。
