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通过镜头理解儿科和青少年癌症幸存者及其父母的癌症生存体验:一项摄影心声研究。

Understanding the Experience of Cancer Survivorship Among Pediatric and Adolescent Cancer Survivors and Their Parents Through Camera Lenses: A Photovoice Study.

机构信息

The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong SAR, China.

Department of Paediatrics, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong SAR, China.

出版信息

Psychooncology. 2024 Sep;33(9):e9306. doi: 10.1002/pon.9306.

DOI:10.1002/pon.9306
PMID:39191639
Abstract

OBJECTIVE

Although the relative survival rate of childhood cancer has increased substantially in recent years, the pursuit of successful outcomes is often accompanied by negative impacts on pediatric and adolescent cancer survivors and their parents' physical and psychological well-being. However, little is known about their experiences during the period of cancer survivorship. This study aimed to gain an understanding of the experience of cancer survivorship among pediatric and adolescent cancer survivors and their parents.

METHODS

This study utilized a descriptive qualitative study employing the photovoice design. From September 2022 to March 2023, 17 pediatric and adolescent cancer survivors (9-18 years), who had completed active treatment at least 6 months before recruitment, participated in this study. A total of 217 photographs submitted by survivors and their parents and the interview data, were thematically analyzed to identify themes and subthemes.

RESULTS

The analysis revealed five prominent themes: indelible marks, struggling with late effects, striving to return to normalcy, the strength of support, and living in the moment and hope for the future.

CONCLUSION

The findings shed light on the experiences of pediatric and adolescent cancer survivors and their parents throughout the cancer journey, elucidating the influence on both negative and positive aspects. Additionally, the study highlighted that photovoice facilitated self-reflection, the discovery of values, and the recognition of strengths and can be a therapeutic strategy for pediatric and adolescent cancer survivors and their parents in further research.

摘要

目的

尽管近年来儿童癌症的相对存活率有了显著提高,但追求成功的治疗结果往往伴随着对儿科癌症幸存者及其父母身心健康的负面影响。然而,人们对他们在癌症康复期间的经历知之甚少。本研究旨在了解儿科癌症幸存者及其父母的癌症康复体验。

方法

本研究采用描述性定性研究方法,运用影像照护设计。2022 年 9 月至 2023 年 3 月,17 名儿科癌症幸存者(9-18 岁)参与了本研究,他们在招募前至少完成了 6 个月的积极治疗。对幸存者及其父母提交的 217 张照片和访谈数据进行了主题分析,以确定主题和子主题。

结果

分析结果揭示了五个突出的主题:不可磨灭的印记、与晚期效应作斗争、努力恢复正常、支持的力量以及活在当下和对未来的希望。

结论

研究结果揭示了儿科癌症幸存者及其父母在癌症康复过程中的体验,阐明了对消极和积极方面的影响。此外,该研究还强调了影像照护可以促进自我反思、发现价值观以及认识到优势,并且可以作为儿科癌症幸存者及其父母在进一步研究中的一种治疗策略。

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