Banas Jennifer R, Victorson David, Gutierrez Sandra, Cordero Evelyn, Guitleman Judy, Haas Niina
Department of Health, Physical Education, Recreation, and Athletics, Northeastern Illinois University, 5500 North St. Louis Avenue, Chicago, IL, 60625, USA.
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
J Cancer Educ. 2017 Mar;32(1):158-165. doi: 10.1007/s13187-016-1066-6.
Cancer and its treatment can significantly impact health-related quality of life (HRQOL) (J Pain Symptom Manag 9 (3):186-192, 1994; Soc Sci Med 46:1569-1584, 1998), particularly for Hispanics (Healthcare Financ Rev 29 (4):23-40, 2008; Psycho-Oncology 21 (2):115-124, 2012). Moreover, providers of cancer support for this population may encounter unique challenges. Grounded in social capital theory, this study identified Spanish-speaking, Hispanic breast cancer survivor support needs and preferences for a mHealth intervention. A user-centered, community-engaged research design was employed, consisting of focus groups made up of constituents from a local Hispanic-serving, cancer support organization. Focus group audio-recordings, translated into English, were coded using a grounded theory analytic approach. First, lead researchers read the complete transcripts to obtain a general sense of the discussion. Next, coding rules were established (e.g., code at the most granular level; double and triple code if necessary, code exhaustively) and initial codebook was created through open-coding. Three new coders were trained to establish requisite kappa statistic levels (≥.70) for inter-rater reliability. With training and discussion, kappa estimates reached .81-.88. Focus group (n = 31) results revealed a mHealth intervention targeting Hispanic cancer patients should not only offer information and support on disease/treatment effects but also respond to the individual's HRQOL, particularly emotional and social challenges. Specifically, participants expressed a strong desire for Spanish content and to connect with others who had gone through a similar experience. Overall, participants indicated they would have access to and would use such an intervention. Findings indicate positive support for a mHealth tool, which is culturally tailored to Spanish speakers, is available in Spanish, and connects cancer patients with survivors.
癌症及其治疗会对健康相关生活质量(HRQOL)产生重大影响(《疼痛与症状管理杂志》9(3):186 - 192, 1994;《社会科学与医学》46:1569 - 1584, 1998),对西班牙裔人群影响尤甚(《医疗保健财务评论》29(4):23 - 40, 2008;《心理肿瘤学》21(2):115 - 124, 2012)。此外,为该人群提供癌症支持的服务提供者可能会遇到独特的挑战。基于社会资本理论,本研究确定了讲西班牙语的西班牙裔乳腺癌幸存者对移动健康干预的支持需求和偏好。采用了以用户为中心、社区参与的研究设计,包括由当地一家为西班牙裔服务的癌症支持组织的成员组成的焦点小组。焦点小组的录音被翻译成英语,采用扎根理论分析方法进行编码。首先,首席研究员阅读完整的文字记录以获得讨论的总体感觉。接下来,制定编码规则(例如,在最细致的层面进行编码;必要时进行双重和三重编码,进行全面编码),并通过开放式编码创建初始编码手册。培训了三名新的编码员以建立评分者间信度所需的kappa统计水平(≥.70)。经过培训和讨论,kappa估计值达到了.81 -.88。焦点小组(n = 31)的结果显示,针对西班牙裔癌症患者的移动健康干预不仅应提供有关疾病/治疗效果的信息和支持,还应回应个体的健康相关生活质量,特别是情感和社会方面的挑战。具体而言,参与者强烈希望获得西班牙语内容,并与有类似经历的人建立联系。总体而言,参与者表示他们愿意使用这样的干预措施。研究结果表明,对一种针对讲西班牙语人群进行文化定制、提供西班牙语版本且能将癌症患者与幸存者联系起来的移动健康工具持积极支持态度。