Child Health Evaluative Sciences, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, M5G 1X8, Canada.
J Cancer Surviv. 2012 Sep;6(3):278-86. doi: 10.1007/s11764-012-0222-1. Epub 2012 Apr 28.
The ability for adolescents with cancer (AWC) to engage in disease self-management may result in improved cancer outcomes and quality-of-life ratings for this group. Despite this, a comprehensive self-management program for this group is yet to be developed. To ensure that self-management programming developed for AWC meets the needs of this group, discussion with key stakeholders (i.e., AWC, parents, and healthcare providers) is required.
A descriptive qualitative design was used. Adolescents (n = 29) who varied in age (12 to 18 years) and type of cancer, their parents (n = 30) and their healthcare providers (n = 22) were recruited from one large tertiary-care oncology center. Audio-taped semi-structured individual and focus-group interviews were conducted with participants. Transcribed data were organized into categories that reflected emerging themes.
Four major themes, which captured the self-management needs of AWC, emerged from the data. These themes were: (1) disease knowledge and cancer care skills, (2) knowledge and skills to support effective transition to adult healthcare, (3) delivery of AWC-accessible healthcare services, and (4) supports for the adolescent with cancer.
In order to provide comprehensive, relevant, and acceptable self-management programs to AWC, the voices of this population, their parents, and healthcare providers should be considered. Findings from this study will be used to develop and evaluate cancer self-management programming for AWC.
Self-management represents an important avenue for exploration into improving cancer outcomes and quality of life for survivors of cancers during adolescence.
青少年癌症患者（AWC）有能力进行疾病自我管理，可能会改善该群体的癌症结果和生活质量评分。尽管如此，针对该群体的综合自我管理计划尚未开发。为确保为 AWC 开发的自我管理计划满足该群体的需求，需要与利益相关者（即 AWC、家长和医疗保健提供者）进行讨论。
使用描述性定性设计。从一家大型三级肿瘤中心招募了年龄在 12 至 18 岁之间、患有不同类型癌症的青少年（n=29）及其父母（n=30）和医疗保健提供者（n=22）。对参与者进行了录音的半结构化个人和焦点小组访谈。转录的数据被组织成反映新出现主题的类别。
从数据中出现了四个主要主题，这些主题反映了 AWC 的自我管理需求。这些主题是：（1）疾病知识和癌症护理技能，（2）支持有效过渡到成人医疗保健的知识和技能，（3）提供 AWC 可获得的医疗保健服务，以及（4）为青少年癌症患者提供支持。
为了为 AWC 提供全面、相关和可接受的自我管理计划，应考虑该人群、其父母和医疗保健提供者的意见。本研究的结果将用于开发和评估针对 AWC 的癌症自我管理计划。
自我管理代表了探索改善青少年癌症幸存者癌症结果和生活质量的重要途径。
