Development of a National Caregiver Health Survey for Hematopoietic Stem Cell Transplant: Qualitative Study of Cognitive Interviews and Verbal Probing
Development of a National Caregiver Health Survey for Hematopoietic Stem Cell Transplant: Qualitative Study of Cognitive Interviews and Verbal Probing
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DOI：
10.2196/17077
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发表时间：
2020-01-01
影响因子：
2.2
通讯作者：
Choi, Sung Won
中科院分区：
文献类型：
--
作者：
Kedroske, Jacob;Koblick, Sarah;Choi, Sung Won
背景资料：Roadmap 1.0是一款移动的健康应用程序，之前是为接受造血干细胞移植（HSCT）的患者的护理人员开发的。针对最终用户的形成性研究（护理人员）可以帮助通知应用程序的设计和开发，允许额外的组件被纳入应用程序，然后可以在未来的随机对照试验中进行测试。目的：本研究旨在创建一个方法严格的全国调查，这将有助于通知路线图2.0的发展。我们在2018年11月18日至2019年2月7日期间在美国中西部一家大型学术医疗机构的血液和骨髓移植部门进行了一项前瞻性定性研究。认知访谈，包括有声思维和言语探测技术，进行了10名成年照顾者（>= 18岁）接受HSCT的患者。大多数参与者是女性（9/10，90%），白色（9/10，90%），已婚（9/10，90%），至少兼职（6/10，60%），成人患者的照顾者（7/10，70%），并有一定的大学教育（9/10，90%）和家庭年收入60，000美元或更高（6/10，60%）。除一次访谈外，所有访谈都经允许进行了录音。总体而言，参与者参与了调查草案的认知访谈过程，其中包括7个主题。访谈突出了可以进一步完善调查项目的领域，例如提供更多的应答选择（例如，“NA”）或澄清移植类型（例如，自体或同种异体）或移植护理背景（例如，HSCT前、HSCT期间、HSCT后、住院患者和门诊患者）。除了这些发现之外，人口统计学、生活经历、技术、积极活动和情绪中的项目通常被解释为预期的。根据访谈记录和访谈者的现场记录，自我效能感中的项目（照顾者自我效能量表）和应对（简短应对取向的问题经历的库存）问卷产生了更多的混乱之间的采访者和参与者，反映了困难的意义解释的一些调查项目。本研究结合了调查方法中描述问题回答过程的四个认知方面：（1）理解，（2）信息检索，（3）判断和决策，（4）应答--运用认知访谈中的有声思维和探究技术。我们的结论是，这种方法上严格的过程通知修订和改进我们的最终问卷设计。
Background: Roadmap 1.0 is a mobile health app that was previously developed for caregivers of patients who have undergone hematopoietic stem cell transplantation (HSCT). Formative research targeted toward its end users (caregivers) can help inform app design and development, allowing additional components to be incorporated into the app, which can then be tested in a future randomized controlled trial.Objective: This study aimed to create a methodologically rigorous national survey that would help inform the development of Roadmap 2.0.Methods: We conducted a prospective, qualitative research study that took place between November 18, 2018, and February 7, 2019, in a blood and marrow transplant unit within a large academic medical institution in the midwestern part of the United States. Cognitive interviews, including think-aloud and verbal probing techniques, were conducted in 10 adult caregivers (>= 18 years) of patients who had undergone HSCT.Results: Most participants were female (9/10, 90%), white (9/10, 90%), married (9/10, 90%), employed at least part time (6/10, 60%), caregivers of adult patients (7/10, 70%), and had some college education (9/10, 90%) and an annual household income of $60,000 or higher (6/10, 60%). All but one interview was audio-recorded, with permission. Overall, participants were engaged in the cognitive interview process of the draft survey, which included 7 topics. The interviews highlighted areas wherein survey items could be further refined, such as offering more response choices (eg, "NA") or clarifying the type of transplant (eg, autologous or allogeneic) or context of transplant care (eg, pre-HSCT, during HSCT, post-HSCT, inpatient, and outpatient). Apart from these findings, the items in demographics, caregiving experiences, technology, positive activities, and mood were generally interpreted as intended. On the basis of the transcript data and field notes by the interviewer, items within self-efficacy (Caregiver Self-Efficacy Scale) and coping (Brief Coping Orientation to Problems Experienced inventory) questionnaires generated more confusion among interviewer and participants, reflecting difficulties in interpreting the meaning of some survey items.Conclusions: This study incorporated the four cognitive aspects of survey methodology that describe the question-answering process-(1) comprehension, (2) information retrieval, (3) judgment and decision making, and (4) responding-by using the think-aloud and probing techniques in cognitive interviews. We conclude that this methodologically rigorous process informed revisions and improved our final questionnaire design.