Wells F, Ritchie D, McPherson A C
Queen's Medical Centre, Nottingham, UK.
Child Care Health Dev. 2013 Jul;39(4):602-12. doi: 10.1111/j.1365-2214.2012.01399.x. Epub 2012 Jun 8.
Renal replacement therapy (RRT) transforms the life prospects of young people with established renal failure. However, these treatments can have significant physiological and psychological implications for adolescents as they prepare to transition into adulthood. Health policies increasingly emphasize children and youth's active participation and consultation as users of health services, yet studies infrequently seek their experiences directly.
Adolescents receiving RRT in a large UK teaching hospital took photographs illustrating the impact of their condition and treatment on their lives. Qualitative photo elicitation interviews were conducted to explore the significance of the images and the young person's experiences. Interviews were analysed using descriptive thematic analysis.
Ten young people aged 13-17 years participated. Themes identified were: (1) understanding and acceptance of treatment; (2) living in a non-functioning body; (3) impact upon daily life; (4) sources of support. Young people found treatments challenging and experienced significant impact on relationships and daily routines. Yet, health was prioritized over body image and participants demonstrated great emotional resilience. Young people valued support from family and friends, although were wary of disclosing their condition in case it resulted in being highlighted as different. Young people reported hospital staff as being caring and professional, but their biggest virtue appeared to be their willingness to treat the young people as 'normal'.
Young people engaged readily with the research, and frankly described the impact of RRT on their everyday lives. Service providers must ensure that adolescents' developmental needs are met as traditional tasks of adolescence may lose priority. However, it is also clear that young people's ability to cope with treatments should not be underestimated.
肾脏替代疗法（RRT）改变了患有终末期肾衰竭的年轻人的生活前景。然而，这些治疗方法在青少年准备步入成年期时，可能会对他们产生重大的生理和心理影响。卫生政策越来越强调儿童和青少年作为卫生服务使用者的积极参与和咨询，但研究很少直接探寻他们的经历。
在英国一家大型教学医院接受RRT治疗的青少年拍摄了照片，展示他们的病情和治疗对其生活的影响。通过定性照片启发照片启发式访谈来探究这些照片的意义以及年轻人的经历。访谈采用描述性主题分析进行分析。
10名年龄在13至17岁之间的年轻人参与了研究。确定的主题有：（1）对治疗的理解和接受；（2）生活在机能失调的身体中；（3）对日常生活的影响；（4）支持来源。年轻人发现治疗颇具挑战性，且对人际关系和日常生活产生了重大影响。然而，健康比身体形象更受重视，参与者展现出了很强的情绪恢复力。年轻人重视家人和朋友的支持，尽管他们担心透露自己的病情会导致被视为异类。年轻人表示医院工作人员关心且专业，但他们最大的优点似乎是愿意将年轻人当作“正常人”来对待。
年轻人积极参与了这项研究，并坦率地描述了RRT对他们日常生活的影响。服务提供者必须确保满足青少年的发展需求，因为青少年的传统任务可能不再是首要任务。然而，同样明显的是，年轻人应对治疗的能力不应被低估。
