妇科癌症患者及其护理人员对获得移动医疗支持的自我管理的需求:焦点小组研究。

IF 3.3 Q2 ONCOLOGY JMIR Cancer Pub Date : 2024-10-03 DOI:10.2196/48465
Grace B Campbell, Hansol Kim, Tara C Klinedinst, Julie Klinger, Young Ji Lee, Heidi S Donovan
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引用次数: 0

摘要

背景:妇科癌症患者的家庭照护者经历着极大的痛苦。基于网络的照顾者支持干预措施已在改善照顾者的结果方面取得了成效。然而,缺乏可移植性可能是一个限制因素。移动医疗(mHealth)应用程序可以填补这一空白,并促进患者与护理者之间的沟通:我们试图获得有关所需使用方法和功能的信息,以便设计一款针对妇科癌症患者及其护理人员的移动医疗自我管理支持应用程序:我们对接受过妇科癌症(卵巢癌、输卵管癌、原发性腹膜癌、子宫癌、子宫内膜癌、宫颈癌和外阴癌)治疗的妇女进行了 Zoom 焦点小组讨论;患者还被要求邀请一位自认为 "最亲密的支持者"(护理人员)。半结构式焦点小组指南用于了解患者和护理人员在信息和支持方面的认知差距、所需的移动医疗应用程序功能以及对使用应用程序的兴趣和偏好。转录后,使用主题矩阵进行快速定性分析,以确定各小组的共同主题:共进行了 8 个小组的讨论。最终样本包括 41 名妇科癌症患者和 22 名支持者或照顾者(总人数=63)。患者年龄在 32 至 84 岁之间,大多数(38/41,93%)为白人和已婚人士。在护理人员(人数=22)中,15 人(68%)为男性,7 人(32%)为女性,年龄在 19 岁至 81 岁之间。总体而言,59%(n=13)的护理人员为配偶。旨在引出 3 个先验主题的问题产生了以下主题:主题 1--信息和支持方面的差距:查找相关信息耗费时间;患者和护理人员在决定出现问题的紧迫性以及向谁寻求信息和指导方面缺乏信心;主题 2--移动医疗应用程序的期望功能:患者和护理人员希望获得集中的、经过整理的、值得信赖的信息;他们希望获得针对特定个人和癌症相关需求的及时建议;他们希望有机会通过应用程序与临床和同行专家进行互动;以及主题 3--对应用程序使用的兴趣和偏好:患者和护理人员需要在应用程序中拥有私人空间,以便在他人不知情的情况下获得信息和支持;患者和护理人员希望能够控制与其他家庭成员共享信息。结论设计一款供患者和护理人员使用的移动医疗应用程序给干预设计者和应用程序开发者带来了独特的挑战。研究结果表明,应用程序开发人员需要优先考虑应用程序功能的灵活性,并为个人提供控制患者和护理人员之间信息共享的能力。
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Needs of Patients With Gynecologic Cancer and Their Caregivers for Obtaining mHealth-Supported Self-Management: Focus Group Study.

Background: Family caregivers of individuals with gynecologic cancer experience high levels of distress. Web-based caregiver support interventions have demonstrated efficacy in improving caregiver outcomes. However, the lack of portability could be a limitation. Mobile health (mHealth) apps could fill this gap and facilitate communication between patient-caregiver dyads.

Objective: We sought to obtain information on desired usage and features to be used to design an mHealth self-management support app targeting both patients with gynecologic cancer and their caregivers.

Methods: We conducted Zoom focus groups with women who had been treated for gynecologic cancers (ovarian, fallopian, primary peritoneal, uterine, endometrial, cervical, and vulvar); patients were also asked to invite a self-identified "closest support person" (caregiver). A semistructured focus group guide was used to elicit information on patients' and caregivers' perceived gaps in information and support, desired features of an mHealth app, and interest in and preferences for app usage. After transcription, rapid qualitative analysis using a thematic matrix was used to identify common themes across groups.

Results: A total of 8 groups were held. The final sample included 41 individuals with gynecologic cancer and 22 support persons or caregivers (total n=63). Patients were aged between 32 and 84 years, and most (38/41, 93%) were White and married. For caregivers (n=22), 15 (68%) identified as male and 7 (32%) as female, with ages ranging between 19 and 81 years. Overall, 59% (n=13) of caregivers were spouses. Questions geared at eliciting 3 a priori topics yielded the following themes: topic 1-gaps in information and support: finding relevant information is time-consuming; patients and caregivers lack confidence in deciding the urgency of problems that arise and from whom to seek information and guidance; topic 2-desired features of the mHealth app: patients and caregivers desire centralized, curated, trustworthy information; they desire timely recommendations tailored to specific personal and cancer-related needs; they desire opportunities to interact with clinical and peer experts through the app; and topic 3-interest and preferences for app usage: need for private space in the app for patients and caregivers to get information and support without the others' knowledge; patients and caregivers desire having control over sharing of information with other family members.

Conclusions: Designing a single mHealth app to be used by patients and caregivers presents unique challenges for intervention designers and app developers. Implications of the study suggest that app developers need to prioritize flexibility in app functionality and provide individuals the ability to control information sharing between patients and caregivers.

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来源期刊
JMIR Cancer
JMIR Cancer ONCOLOGY-
CiteScore
4.10
自引率
0.00%
发文量
64
审稿时长
12 weeks
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