目的:父母癌症带来的变化和挑战影响整个家庭。证据表明后代的心理社会风险增加。在面临父母癌症的青少年和年轻人(AYAs)中进行的研究主要集中在这些心理社会问题上。作为一种反应,对这一人群需求的研究有所增加,因为这些知识对于发展适当的支持至关重要。尽管增加了,一些AYA仍然代表性不足,即18岁以上的人和父母患有无法治愈的癌症的人。此外,阻碍或促进获得和接受满足他们需求的支持的因素调查不足。提高我们对这些问题的理解对于为这些年轻人制定更有效的支持干预措施至关重要。因此,我们的目标是深入了解父母患有癌症的AYAs的感知支持需求,包括上述代表性不足的小组,以及促进或阻碍他们使用支持的感知因素。
方法:我们对17位父母患有任何类型和阶段癌症的AYAs进行了半结构化访谈,使用常规定性内容分析(QCA)进行分析。
结果:从数据中出现了六个主要类别,包括各种子类别:1)围绕披露时间的需求,2)信息需求,3)非正式支持需求,4)需要有效的个人应对策略,5)正式支持需求,和6)影响支持需求的情境和医疗因素。AYAs感知的家庭成员,朋友和老师是非正式支持的重要来源,但是与父母也患有癌症的同龄人缺乏联系。他们表示需要父母的医疗团队提供正式的信息和情感支持,(onco)心理学家,和他们的全科医生。AYAs在获得正式支持方面面临障碍。医疗保健提供者的积极态度和有关可用支持的信息将帮助他们满足他们的需求。此外,我们对中学后教育的需求和问题有了新的认识。
结论:与患有癌症的父母一起生活的AYAs经验信息,情感,以及多种背景下的实际需求,比如家,学校,休闲和医院环境。他们将其非正式和正式网络确定为满足这些需求的重要关键人物。
OBJECTIVE: Parental cancer brings changes and challenges which affect the whole family. Evidence shows heightened psychosocial risk among the offspring. Research among adolescents and young adults (AYAs) facing parental cancer has mainly focused on these psychosocial problems. As a reaction, there has been an increase in research on the needs of this population, since this knowledge is crucial for developing appropriate support. Despite this increase, some AYAs are still underrepresented, namely those over eighteen years old and those who have a parent with incurable cancer. Moreover, the factors hampering or fostering access to and receipt of support addressing their needs are under-investigated. Increasing our understanding of these issues is crucial to developing more effective support interventions for these young people. Our aim was therefore to gain insight into the perceived support needs of AYAs who have a parent with cancer, including the mentioned underrepresented subgroups, and the perceived factors facilitating or hindering their use of support.
METHODS: We conducted semi-structured interviews with 17 AYAs who have a parent with cancer of any type and stage, which were analyzed using conventional Qualitative Content Analysis (QCA).
RESULTS: Six main categories emerged from the data, encompassing various subcategories: 1) Needs surrounding the time of disclosure, 2) Information needs, 3) Informal support needs, 4) Need for effective personal coping strategies, 5) Formal support needs, and 6) Contextual and medical factors affecting support needs. AYAs perceived family members, friends and teachers as important sources of informal support, but lacked contact with peers who also have a parent with cancer. They expressed a need for formal informational and emotional support from their parent\'s medical team, (onco)psychologists, and their general practitioner. AYAs faced barriers in accessing formal support. A proactive attitude from healthcare providers and information about available support would help them meet their needs. Furthermore, we shed new light on needs and issues in post-secondary education.
CONCLUSIONS: AYAs who are living with their parent with cancer experience informational, emotional, and practical needs in multiple contexts, such as the home, school, leisure and hospital environment. They identify their informal and formal network as important key figures in addressing these needs.