Magasi Susan, Banas Jennifer, Horowitz Bruriah, Reis Judy Panko, The Kimberly, Wilson Tom, Victoson David
Prog Community Health Partnersh. 2019;13(5):49-59. doi: 10.1353/cpr.2019.0038.
Cancer care for people with disabilities (PWD) is rife with uncertainty and obstacles. Not only do PWD have to contend with cancer and treatment-related sequelae, but also its impact on disabling conditions and functional capacity, as well as a health care system lacking accessibility and disability competence. Peer support can address important needs for emotional and informational support. mHealth tools for smart phones, tablets, or laptops hold promise to deliver such support in an accessible and scalable manner. This concept is unexplored for use among PWD with cancer.
To describe a community-based participatory study that 1) identifies consumer-reported support needs and priorities among PWD and cancer and 2) integrates consumer perspectives into the design of an mHealth cancer support tool to address these needs and priorities.
Part 1 is a thematic analysis of semistructured, qualitative interviews with a purposive sample of experts in health and cancer care for PWD (n = 7) and a convenience sample of cancer survivors with preexisting disabilities (n = 9). In part 2, results were integrated to develop an mHealth peer support tool to addresses identified needs.
Themes included 1) barriers across the cancer care continuum, 2) strengths within the disability community, and 3) recommendations for mHealth and peer support. Based on the qualitative findings, we designed a mHealth tool for peer support and information sharing among PWD with cancer.
Consumer-informed mHealth tools hold great potential to leverage strengths in the disability community to address emotional and informational needs created by a lack of disability competence across the cancer care continuum.
为残疾人士提供的癌症护理充满了不确定性和障碍。残疾人士不仅要应对癌症及与治疗相关的后遗症,还要应对其对残疾状况和功能能力的影响,以及一个缺乏无障碍设施和残疾护理能力的医疗保健系统。同伴支持可以满足情感和信息支持的重要需求。用于智能手机、平板电脑或笔记本电脑的移动健康工具有望以无障碍且可扩展的方式提供此类支持。这一概念在患有癌症的残疾人士中尚未得到探索。
描述一项基于社区的参与性研究,该研究1)确定残疾癌症患者报告的支持需求和优先事项,2)将消费者的观点纳入移动健康癌症支持工具的设计中,以满足这些需求和优先事项。
第一部分是对残疾人士健康和癌症护理专家的目的性样本(n = 7)以及患有残疾的癌症幸存者的便利样本(n = 9)进行的半结构化定性访谈的主题分析。在第二部分中,整合结果以开发一个移动健康同伴支持工具,以满足已确定的需求。
主题包括1)癌症护理连续过程中的障碍,2)残疾群体的优势,3)对移动健康和同伴支持的建议。基于定性研究结果,我们设计了一个移动健康工具,用于患有癌症的残疾人士之间的同伴支持和信息共享。
以消费者为导向的移动健康工具具有巨大潜力,可以利用残疾群体的优势,满足癌症护理连续过程中因缺乏残疾护理能力而产生的情感和信息需求。