“难以参与日常生活”：患有长期健康挑战的青年的生活体验。
'Struggling to participate in everyday life': emerging adults' experiences of living with long-term health challenges.
机构信息
Faculty of Health Sciences, Department of Nursing and Health Promotion, Oslo Metropolitan University, Oslo, Norway.
Frambu Resource Centre for Rare Disorders, Siggerud, Norway.
出版信息
BMC Public Health. 2023 Jul 17;23(1):1368. doi: 10.1186/s12889-023-16291-6.
AIM
To gain a deeper understanding of the experiences of participation in the everyday life of emerging adults living with long-term health challenges and how this influences their own quality of life.
METHODS
Using an explorative study design, data were collected through in-depth interviews with a sample of 12 young people aged 18-29 years living with long-term health challenges in Norway.
FINDINGS
The analysis identified one overarching theme of struggling to participate in everyday life, and four subthemes: the notion of being independent but also dependent, experiencing mismatch between needs and support, experiencing deprivation of spontaneity and feeling uncertain about the future. The emerging adults experienced difficulties with participation in key areas of life such as education, employment and leisure activities. Associated symptoms of their diagnosis, limited physical abilities and lack of sufficient support made it hard to participate in everyday life the way they aspired to.
CONCLUSION
The challenges of living with a long-term health challenge as an emerging adult contributed to limitations in participation in different areas of life that was perceived as important for their quality of life.
目的
深入了解患有长期健康挑战的成年初期参与者的日常生活体验，以及这如何影响他们自己的生活质量。
方法
采用探索性研究设计，通过对挪威 12 名 18-29 岁患有长期健康挑战的年轻人进行深入访谈收集数据。
结果
分析确定了一个总体主题，即努力参与日常生活，以及四个子主题：独立但也依赖的观念、需求与支持之间的不匹配、自发性的剥夺以及对未来的不确定感。这些成年初期参与者在教育、就业和休闲活动等生活的关键领域参与方面存在困难。他们的诊断相关症状、有限的身体能力和缺乏足够的支持，使得他们难以按照自己的愿望参与日常生活。
结论
作为成年初期参与者，长期健康挑战带来的挑战导致他们在生活的不同领域参与受限，这被认为对他们的生活质量很重要。
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