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“我这样出生绝对是有目的的”:慢性病青少年的生活经历

"It was definitely for a purpose that I was born this way": Lived experiences of adolescents with chronic illness.

作者信息

Keller Briana P, Rothenberg Emily, Helveston Ashton, Boles Jessika C

机构信息

Peabody College, Vanderbilt University, Nashville, TN, USA.

出版信息

Health Psychol Open. 2025 Aug 23;12:20551029251370802. doi: 10.1177/20551029251370802. eCollection 2025 Jan-Dec.

Abstract

Teenagers with chronic illnesses gain uniquely increased awareness of the triumphs, challenges, and responsibilities associated with their condition. Although some studies have explored the experiences of adolescents with cancer, few have studied other chronic illness groups. Therefore, the purpose of this phenomenological qualitative study was to explore adolescent perceptions of living and growing with a chronic illness. 12 individuals (ages 13-17) diagnosed with one or more chronic health conditions participated in a semi-structured interview. Interviews were audio-recorded and transcribed verbatim. Using interpretative phenomenological analysis, five themes were generated by the researchers: (1) trajectory of illness over time, (2) illness- and treatment-related restrictions, (3) interpersonal concerns, (4) reaching acceptance, and (5) perceived gains/benefits. Participants identified negative aspects of a chronic illness while also noting positive impacts on their lives. Despite little overlap in diagnoses, similar themes and experiences were present among participants, suggesting some level of generalizability among chronic health conditions.

摘要

患有慢性病的青少年对与自身病情相关的成功、挑战和责任有独特的增强意识。尽管一些研究探讨了患有癌症的青少年的经历,但很少有研究其他慢性病群体。因此,这项现象学定性研究的目的是探索青少年对患慢性病生活和成长的认知。12名被诊断患有一种或多种慢性健康状况的个体(年龄在13 - 17岁之间)参与了半结构化访谈。访谈进行了录音并逐字转录。通过解释性现象学分析,研究人员得出了五个主题:(1)疾病随时间的轨迹,(2)与疾病和治疗相关的限制,(3)人际方面的担忧,(4)达成接受,以及(5)感知到的收获/益处。参与者指出了慢性病的负面方面,同时也提到了对他们生活的积极影响。尽管诊断之间几乎没有重叠,但参与者中存在相似的主题和经历,这表明在慢性健康状况之间存在一定程度的普遍性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/e5b8/12375145/f2563041c877/10.1177_20551029251370802-fig1.jpg

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