关注青少年癌症治疗过渡期的幸福感:来自全国众包研究的视角

IF 1.2 4区 医学 Q4 ONCOLOGY
Alejandra Perez Ramirez, Glynnis A McDonnell, Kimberly Buff, Jessica Pierce, Karen Wohlheiter, Stephanie Guarino, Anne E Kazak, Melissa A Alderfer
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引用次数: 0

摘要

目的:考虑到这一生命阶段的发展因素,青春期患癌症的经历尤其具有挑战性。因此,从癌症治疗过渡到青少年的追求需要一个发展敏感的方法。本研究将青少年幸福框架应用于从青少年和青年癌症幸存者及其照顾者收集的定性数据,以更好地了解他们的经历和需求,并为青少年发展适当的过渡护理提出建议。方法:研究人员与关键信息社区咨询委员会合作制定研究程序,并与一家为癌症儿童提供护理服务的全国性非营利组织合作招募参与者。AYA癌症幸存者(N = 30;12-20岁;53%女性)和照顾者(N = 43;100%女性)通过在线众包平台回答开放式问题。定向内容分析被用来提炼出在癌症治疗过渡期间促进青少年福祉的相关主题。结果:八个不同的主题映射到青少年福祉框架的五个领域,并强调在癌症治疗过渡期间需要关注青少年福祉的各个方面,包括身体恢复和心理健康,与他人的联系,重新进入学校和社会,发展代理和弹性,以及规划一个富有成效的未来。研究结果为改善青少年过渡期护理提出了具体建议。结论:关注青少年的发展需求和福祉,当他们结束癌症治疗时,可以缓解他们从治疗团队的过渡,提高他们对癌症后护理的参与度,同时培养他们对健康、联系、成就和适应能力的适当关注。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Attending to Adolescents' Well-Being During Their Transition off Cancer Treatment: Perspectives from a Nationwide Crowdsourcing Study.

Purpose: The experience of cancer during adolescence is particularly challenging given developmental factors during this life stage. Therefore, the transition off cancer care and back to adolescent pursuits requires a developmentally sensitive approach. This study applied the Adolescent Well-Being Framework to qualitative data collected from adolescent and young adult (AYA) cancer survivors and their caregivers to better understand their experiences and needs and to develop recommendations for developmentally appropriate transition care for adolescents. Methods: Researchers partnered with a key informant community advisory board to develop study procedures and recruited participants in partnership with a national nonprofit organization serving caregivers of children with cancer. AYA cancer survivors (N = 30; aged 12-20 years; 53% female) and caregivers (N = 43; 100% female) responded to open-ended questions through an online crowdsourcing platform. Directed content analysis was used to distill themes relevant to fostering adolescent well-being during the transition off cancer treatment. Results: Eight distinct themes mapped onto the five domains of the Adolescent Well-Being Framework and highlight the need to attend to various aspects of adolescent well-being during the transition off cancer treatment, including physical recovery and mental health, connectedness to others, reentry into school and society, developing agency and resilience, and planning for a productive future. Findings informed specific recommendations to improve transition care for adolescents. Conclusion: Attention to the developmental needs and well-being of adolescents, as they end cancer treatment, may ease their transition away from their treatment team and improve engagement in post-cancer care while fostering a developmentally appropriate focus on health, connection, achievement, and resilience.

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来源期刊
CiteScore
3.70
自引率
15.00%
发文量
114
期刊介绍: Journal of Adolescent and Young Adult Oncology (JAYAO) breaks new ground as the first cancer journal dedicated to all aspects of adolescent and young adult (AYA)-aged cancer patients and survivors. JAYAO is the only central forum for peer-reviewed articles, reviews, and research in the field, bringing together all AYA oncology stakeholders and professionals across disciplines, including clinicians, researchers, psychosocial and supportive care providers, and pediatric and adult cancer institutions.
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