National Institute of Public Health, Research Program on Health and Social Conditions, University of Southern Denmark, Copenhagen, Studiestræde 6, 1455, Copenhagen K, Denmark.
BMC Public Health. 2022 Feb 5;22(1):241. doi: 10.1186/s12889-022-12611-4.
BACKGROUND: In Denmark, around 500 adolescents and young adults (AYAs) aged 15-29 are diagnosed with cancer each year. AYAs affected by cancer constitute a vulnerable group in need of special support in pursuing everyday life as young people. These needs are, however, not currently being adequately met. This study explores the distinctive needs of AYAs aged 15-25 and affected by cancer with the aim of developing and designing an intervention that accommodates these needs and allows AYAs to pursue everyday life following active cancer treatment. METHODS: We combined multiple qualitative methods to conduct six sub-studies: 1) participant observation among support groups for AYAs affected by cancer, 2) field visit at a large Danish hospital, 3) qualitative interviews with AYAs currently or previously diagnosed with cancer, 4) qualitative interviews with practitioners working with young cancer patients or AYAs with chronic conditions, 5) an interactive workshop with practitioners, and 6) an interactive workshop with AYAs. The empirical material was collected between May 2016 and April 2019. The empirical material was read, analysed thematically and coded into the themes; 1) diagnosis and treatment, 2) form of education and 3) age, financial challenges and legal entitlements. RESULTS: Across the empirical material, we found that AYAs' cancer experience was heterogeneous. The needs of AYAs differed according to 1) diagnosis and treatment, 2) type of education and 3) age, financial situation and legal entitlements. The findings demonstrate a need for a tailored intervention accommodating the variety of opportunities, requirements and challenges of AYAs with cancer. We propose an intervention consisting of a multidisciplinary team sited at the hospital where the individual AYA receives treatment. The team's main task will be to maintain AYAs' social competences and ease their return to everyday life after serious illness by balancing educational requirements with cancer treatment. CONCLUSION: Based on the perspectives of practitioners and AYAs affected by cancer, this study outlines an intervention designed as a care pathway in which a multidisciplinary team provides individual and tailored support to AYAs with cancer from the time of diagnosis during and beyond active cancer treatment.
背景：在丹麦，每年约有 500 名 15-29 岁的青少年和年轻人（AYAs）被诊断患有癌症。受癌症影响的 AYAs 是一个弱势群体，他们在追求年轻生活时需要特别的支持。然而，这些需求目前没有得到充分满足。本研究旨在探讨 15-25 岁受癌症影响的 AYAs 的特殊需求，目的是开发和设计一种满足这些需求的干预措施，使 AYAs 在积极治疗癌症后能够继续日常生活。
方法：我们结合了多种定性方法，进行了六项子研究：1）参加针对受癌症影响的 AYAs 的支持小组的参与者观察，2）在一家大型丹麦医院进行实地考察，3）对目前或以前被诊断患有癌症的 AYAs 进行定性访谈，4）对从事年轻癌症患者或患有慢性疾病的 AYAs 工作的从业人员进行定性访谈，5）与从业人员进行互动式研讨会，以及 6）与 AYAs 进行互动式研讨会。实证材料收集于 2016 年 5 月至 2019 年 4 月之间。对实证材料进行了阅读、主题分析和编码，主题包括：1）诊断和治疗，2）教育形式和 3）年龄、财务挑战和法律权益。
结果：在整个实证材料中，我们发现 AYAs 的癌症经历是多种多样的。根据 1）诊断和治疗、2）教育类型和 3）年龄、财务状况和法律权益，AYAs 的需求各不相同。研究结果表明，需要一种量身定制的干预措施，以适应患有癌症的 AYAs 的各种机会、要求和挑战。我们提出了一种干预措施，由一个位于个体 AYA 接受治疗的医院的多学科团队组成。该团队的主要任务是通过平衡教育需求和癌症治疗，维持 AYAs 的社交能力，并在重病后帮助他们回归日常生活。
结论：基于从业者和受癌症影响的 AYAs 的观点，本研究概述了一种干预措施，该措施设计为一种护理途径，其中一个多学科团队在诊断时以及在积极治疗癌症期间和之后为癌症患者提供个性化和量身定制的支持。
J Adolesc Young Adult Oncol. 2017-11-10
Ecancermedicalscience. 2025-4-10
Eur J Cancer Care (Engl). 2022-11
JCO Oncol Pract. 2021-6
J Adolesc Young Adult Oncol. 2021-10
J Adolesc Young Adult Oncol. 2021-2
Pediatr Blood Cancer. 2019-9-16
Zotero 插件