Snethen J A, Broome M E, Bartels J, Warady B A
University of Wisconsin-Milwaukee, Milwaukee, WI, USA.
Pediatr Nurs. 2001 Mar-Apr;27(2):159-61, 164-7.
End stage renal disease (ESRD) is a serious chronic condition, requiring life-long treatment and management to survive. It is unclear how the unique developmental needs of adolescents influence their ability to maintain the complex medical treatment regimen associated with ESRD.
The purpose of this study was to explore the perception of adolescents living with ESRD. Ascertaining the subjective perspectives of the adolescent provides insight into the effects of the chronic condition on their development and well-being.
Q-methodology was used to assess the adolescent's perception of living with ESRD. Thirty-five adolescents, 13 to 18 years, who were on renal dialysis or had received a renal transplant served as participants.
The results of the analysis identified four significant factors. The factors represented four distinct perspectives held by these adolescents living with ESRD: (a) normalization, (b) illness intrusion: barrier to normalcy; (c) illness management: parent-focused; and (d) illness management: self-focused.
Overall, the majority of the adolescents in this study held a more positive perspective of living with ESRD than what has been described previously in the literature. The findings of this exploratory study provide direction for future research and nurses in practice.
终末期肾病（ESRD）是一种严重的慢性疾病，需要终身治疗和管理才能存活。目前尚不清楚青少年独特的发育需求如何影响他们维持与ESRD相关的复杂治疗方案的能力。
本研究的目的是探讨ESRD青少年的认知。确定青少年的主观观点有助于深入了解这种慢性病对他们的发育和幸福的影响。
采用Q方法评估青少年对ESRD生活的认知。35名年龄在13至18岁之间、正在接受肾透析或已接受肾移植的青少年作为参与者。
分析结果确定了四个重要因素。这些因素代表了这些ESRD青少年持有的四种不同观点：（a）正常化；（b）疾病侵扰：正常生活的障碍；（c）疾病管理：以父母为中心；（d）疾病管理：以自我为中心。
总体而言，本研究中的大多数青少年对ESRD生活的看法比之前文献中描述的更为积极。这项探索性研究的结果为未来的研究和实践中的护士提供了方向。
