Development of FamilyTalk: an Intervention to Support Communication and Educate Families About Colorectal Cancer Risk

Development of FamilyTalk: an Intervention to Support Communication and Educate Families About Colorectal Cancer Risk
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DOI:
10.1007/s13187-019-1484-3
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发表时间:
2020-06-01
影响因子:
1.6
通讯作者:
Jarvik, Gail
Jarvik, Gail
中科院分区:
医学4区
文献类型:
--
作者:
Bowen, Deborah J.;Hyams, Travis;Jarvik, Gail

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结直肠癌(CRC)患者的家庭成员患这种疾病的风险可能会增加。然而,大多数CRC可以通过结肠镜筛查来预防,家庭成员可能不知道他们是否被建议进行早期筛查,因为他们的CRC家族史。因此,必须开发工具,以有效地将结肠镜检查推荐年龄的潜在变化和其他重要的CRC相关信息传达给家庭成员。我们修改并调整了一项针对黑色素瘤家庭的成功干预措施,使其适用于CRC家庭,以增加家庭成员的沟通和筛查。多步骤过程包括以下内容:(1)开发干预措施的纸质版本,(2)在CRC家庭中试用纸质版本,(3)开发基于网络的版本,以及(4)测试干预措施的可用性。定性数据收集和分析的试点测试。可用性测试使用定性和定量数据。CRC患者喜欢纸质版,并有多种建议,包括增加更好的介绍,遗传学和家族史部分,以及更清晰的沟通帮助。这款基于网络的工具广受欢迎,并在线性书籍格式的基础上进行了改进,提供了链接、更好的部分说明以及更积极主动的家庭沟通工具。这些进程制作的材料使来自不同家庭的个人感到满意,在宣传《儿童权利公约》方面得到了援助和支持。下一步是在严格的研究项目中评估这些工具的效果。
IFamily members of individuals with colorectal cancer (CRC) may be at increased risk of developing the disease. However, the majority of CRC can be prevented through colonoscopy screening and family members may not be aware if they are recommended to pursue earlier screening because of their family history of CRC. As such, tools must be developed to effectively communicate potential changes to the recommended age for colonoscopy screening and other important CRC-related information to family members. We modified and adapted a successful intervention for families with melanoma to be appropriate for families with CRC to increase communication and screening in family members. The multistep process included the following: (1) developing a paper version of the intervention, (2) piloting the paper version among families with CRC, (3) developing the web-based version, and (4) testing the intervention for usability. Qualitative data was collected and analyzed for pilot testing. Usability testing utilized both qualitative and quantitative data. Patients with CRC liked the paper version and had multiple suggestions, including adding a better introduction, sections on genetics and family history, and clearer communication assistance. The web-based tool was well received and improved upon the linear book format with links, better section instructions, and more proactive communication tools for families. These processes produced materials that satisfied individuals from various families with assistance and support for communicating about CRC. Evaluating the effects of the tools in rigorous research projects is the next step.