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新西兰癌症青少年患者的兄弟姐妹:对幸福产生积极和消极影响的经历。

Siblings of Young People With Cancer in NZ: Experiences That Positively and Negatively Support Well-Being.

作者信息

Porteous Eleanor, Peterson Elizabeth R, Cartwright Claire

机构信息

1 The University of Auckland, Auckland, New Zealand.

出版信息

J Pediatr Oncol Nurs. 2019 Mar/Apr;36(2):119-130. doi: 10.1177/1043454218819455. Epub 2018 Dec 17.

Abstract

Siblings of young people with cancer experience significant distress and these effects often exist long after their sibling's treatment has successfully been completed. In New Zealand, many families must travel several hours to receive treatment, with some having to live away from home for extended periods which can create additional strains. We interviewed 10 siblings of pediatric cancer survivors drawn from a larger quantitative study, to investigate what made siblings' experiences more difficult and to find out what was helpful in supporting their adjustment. The selected participants came from across New Zealand, represented a mix of gender and age, and had a range of depression scores. Our thematic analysis found that experiences that were associated with the most distress included concurrent stressors, and feeling left out, rejected, or isolated. Experiences that were most helpful to their well-being were feeling involved, knowing that they were still important and a priority for their parents, connecting with people through their experiences, and focusing on positive experiences. Our findings suggest that professionals working with these families could help siblings of a child with cancer by promoting hope, acknowledging positive growth, drawing attention to positive events to promote benefit finding, and providing opportunities to have fun. Increasing parental awareness of the impact of differential treatment and improving the public understanding of sibling issues might also be helpful.

摘要

患癌青少年的兄弟姐妹会经历巨大的痛苦,而且这些影响往往在其兄弟姐妹成功完成治疗后的很长时间内依然存在。在新西兰,许多家庭必须长途跋涉数小时才能接受治疗,有些家庭不得不长期离家居住,这可能会带来额外的压力。我们从一项规模更大的定量研究中选取了10名儿科癌症幸存者的兄弟姐妹进行访谈,以调查是什么让兄弟姐妹的经历更加艰难,并找出哪些因素有助于他们适应。选定的参与者来自新西兰各地,涵盖了不同的性别和年龄,且抑郁得分各异。我们的主题分析发现,与最大痛苦相关的经历包括同时存在的压力源,以及感到被冷落、被拒绝或被孤立。对他们的幸福最有帮助的经历是感到被接纳、知道自己对父母来说仍然重要且是优先考虑的对象、通过自身经历与他人建立联系,以及关注积极的经历。我们的研究结果表明,与这些家庭打交道的专业人员可以通过传递希望、认可积极成长、关注积极事件以促进益处发现,以及提供娱乐机会来帮助患癌儿童的兄弟姐妹。提高父母对差别对待影响的认识,以及增进公众对兄弟姐妹问题的理解可能也会有所帮助。

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