PDF(Pubmed)
Abstract：
OBJECTIVE: Adolescents and Young Adults (AYAs) with cancer are an at-risk group with unique palliative and supportive care needs. Social support in AYAs with cancer is associated with better coping, quality of life, and psychosocial well-being. Here, we extend existing research to examine the sources and types of support received by AYAs with advanced cancer.
METHODS: AYAs participated in a semi-structured, 1:1 interview on communication and psychosocial support needs. The present analysis focused on social support experiences for AYAs with advanced cancer. Directed content analysis was used to develop the codebook. Established social support constructs provided a coding framework. We presented our qualitative findings as a code frequency report with quantified frequency counts of all \"source of support\" and \"type of support\" codes. We assigned a global \"sufficiency of support code\" to each AYA.
RESULTS: We interviewed 32 AYAs with advanced cancer (Mage = 18, SDage = 3.2, 41% female). Most AYAs identified family (namely, caregivers) as their primary source of support and stated that family universally provided all types of support: emotional, informational, instrumental, and social companionship. They received informational and emotional support from clinicians, and received emotional support and social companionship from healthy peers, cancer peers, and their existing community. One-third of participants were coded as having \"mixed support\" and described a lack of support in some domains.
CONCLUSIONS: AYAs with advanced cancer described caregivers as their universal source of support, and that other support sources provided support for specific needs. Future research should continue to evaluate social support needs and family-based palliative and supportive care interventions to bolster social support resources in this high-risk group.
METHODS: AYAs participated in a semi-structured, 1:1 interview on communication and psychosocial support needs. The present analysis focused on social support experiences for AYAs with advanced cancer. Directed content analysis was used to develop the codebook. Established social support constructs provided a coding framework. We presented our qualitative findings as a code frequency report with quantified frequency counts of all \"source of support\" and \"type of support\" codes. We assigned a global \"sufficiency of support code\" to each AYA.
RESULTS: We interviewed 32 AYAs with advanced cancer (Mage = 18, SDage = 3.2, 41% female). Most AYAs identified family (namely, caregivers) as their primary source of support and stated that family universally provided all types of support: emotional, informational, instrumental, and social companionship. They received informational and emotional support from clinicians, and received emotional support and social companionship from healthy peers, cancer peers, and their existing community. One-third of participants were coded as having \"mixed support\" and described a lack of support in some domains.
CONCLUSIONS: AYAs with advanced cancer described caregivers as their universal source of support, and that other support sources provided support for specific needs. Future research should continue to evaluate social support needs and family-based palliative and supportive care interventions to bolster social support resources in this high-risk group.
摘要：
目标：患有癌症的青少年和年轻成年人（AYAs）是具有独特姑息治疗和支持治疗需求的高危人群。癌症患者的社会支持与更好的应对有关，生活质量,和社会心理健康。这里,我们扩展了现有的研究，以检查AYAs对晚期癌症的支持来源和类型。
方法：AYAs参与了半结构化，1：1关于沟通和社会心理支持需求的访谈。本分析集中于患有晚期癌症的AYAs的社会支持经验。使用定向内容分析来开发码本。既定的社会支持结构提供了一个编码框架。我们将定性结果作为代码频率报告，其中包含所有“支持源”和“支持类型”代码的量化频率计数。我们为每个AYA分配了一个全局的“支持代码的充分性”。
结果：我们采访了32位患有晚期癌症的AYAs（Mage=18，SDage=3.2，41％为女性）。大多数AYA确定的家庭(即，照顾者)作为他们的主要支持来源，并指出家庭普遍提供所有类型的支持：情感，信息性,器乐,和社会友谊。他们得到了临床医生的信息和情感支持，并得到健康同龄人的情感支持和社会陪伴，癌症同行，和他们现有的社区。三分之一的参与者被编码为“混合支持”，并描述了某些领域缺乏支持。
结论：AYAs晚期癌症患者将照顾者描述为他们普遍的支持来源，以及其他支持来源为特定需求提供支持。未来的研究应继续评估社会支持需求以及基于家庭的姑息和支持性护理干预措施，以增强该高危人群的社会支持资源。
方法：AYAs参与了半结构化，1：1关于沟通和社会心理支持需求的访谈。本分析集中于患有晚期癌症的AYAs的社会支持经验。使用定向内容分析来开发码本。既定的社会支持结构提供了一个编码框架。我们将定性结果作为代码频率报告，其中包含所有“支持源”和“支持类型”代码的量化频率计数。我们为每个AYA分配了一个全局的“支持代码的充分性”。
结果：我们采访了32位患有晚期癌症的AYAs（Mage=18，SDage=3.2，41％为女性）。大多数AYA确定的家庭(即，照顾者)作为他们的主要支持来源，并指出家庭普遍提供所有类型的支持：情感，信息性,器乐,和社会友谊。他们得到了临床医生的信息和情感支持，并得到健康同龄人的情感支持和社会陪伴，癌症同行，和他们现有的社区。三分之一的参与者被编码为“混合支持”，并描述了某些领域缺乏支持。
结论：AYAs晚期癌症患者将照顾者描述为他们普遍的支持来源，以及其他支持来源为特定需求提供支持。未来的研究应继续评估社会支持需求以及基于家庭的姑息和支持性护理干预措施，以增强该高危人群的社会支持资源。
