School of Education and Social Work, University of Dundee, Dundee, DD1 4HN, Scotland.
University of Glasgow, Glasgow, UK.
BMC Palliat Care. 2019 Mar 25;18(1):30. doi: 10.1186/s12904-019-0414-9.
There is a dearth of literature that investigates life transitions of young adults (YAs) with life-limiting conditions, families and professionals. The scant literature that is available has methodological limitations, including not listening to the voice of YAs, collecting data retrospectively, at one time point, from one group's perspective and single case studies. The aim of this study was to address the gaps found in our literature review and provide a clearer understanding of the multiple and multi-dimensional life transitions experienced by YAs and significant others, over a period of time.
This qualitative study used a longitudinal design and data were collected using semi-structured interviews over a 6-month period at 3 time points. Participants included 12 YAs with life-limiting conditions and their nominated significant others (10 family members and 11 professionals). Data were analysed using a thematic analysis approach.
Life transitions of YA and significant others are complex; they experience multiple and multi-dimensional transitions across several domains. The findings challenge the notion that all life transitions are triggered by health transitions of YAs, and has highlighted environmental factors (attitudinal and systemic) that can be changed to facilitate smoother transitions in various aspects of their lives.
This study makes a unique and significant contribution to literature. It provides evidence and rich narratives for policy makers and service providers to change policies and practices that are in line with the needs of YAs with life-limiting conditions as they transition to adulthood. Families and professionals have specific training needs that have not yet been met fully.
目前，关于患有危及生命疾病的青年（YA）及其家庭和专业人员的生活过渡，相关文献十分匮乏。现有的少量文献存在方法学上的局限性，包括没有倾听 YA 的声音、回顾性地收集数据、在一个时间点从一个群体的角度进行、以及单一案例研究。本研究旨在解决我们文献综述中发现的差距，并更清楚地了解 YA 和重要他人在一段时间内经历的多种多维生活过渡。
这项定性研究使用纵向设计，在 3 个时间点使用半结构化访谈在 6 个月的时间内收集数据。参与者包括 12 名患有危及生命疾病的 YA 及其指定的重要他人（10 名家庭成员和 11 名专业人员）。使用主题分析方法分析数据。
YA 和重要他人的生活过渡是复杂的；他们在多个领域经历了多种多维的过渡。研究结果挑战了所有生活过渡都是由 YA 的健康过渡引发的这一观点，并强调了可以改变的环境因素（态度和系统），以促进他们生活各个方面的过渡更加顺利。
这项研究对文献做出了独特而重要的贡献。它为政策制定者和服务提供者提供了证据和丰富的叙述，以改变与患有危及生命疾病的 YA 过渡到成年期相关的政策和实践。家庭和专业人员有特定的培训需求尚未得到充分满足。
