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开发一款支持头颈癌护理的移动应用程序:混合方法研究。

Development of a Mobile App to Support Head and Neck Cancer Caregiving: Mixed Methods Study.

作者信息

Sterba Katherine, Graboyes Evan, Burris Jessica, Scallion Megan, Kinder Hannah, Olsen Jama, Toll Benjamin, Armeson Kent, Day Terry, Chera Bhishamjit, Ruggiero Kenneth

机构信息

Department of Public Health Sciences, Medical University of South Carolina, 86 Jonathan Lucas Street, Charleston, SC, 29425, United States, 1 8438762419.

Department of Otolaryngology-Head and Neck Surgery, Medical University of South Carolina, Charleston, SC, United States.

出版信息

JMIR Cancer. 2025 Jun 10;11:e66471. doi: 10.2196/66471.

DOI:10.2196/66471
PMID:40548448
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12172808/
Abstract

BACKGROUND

Survivors with head and neck cancer (HNC) face challenging treatment consequences that can lead to severe disruptions in swallowing and result in weight loss, malnutrition, and feeding tube dependence. Caregivers (family or friends who provide support), therefore, often encounter distressing nutritional caregiving burdens and feel unprepared to provide adequate support at home.

OBJECTIVE

The purpose of this mixed methods study was to develop a mobile support app to support HNC caregiving with an emphasis on nutritional support following treatment.

METHODS

We assessed perspectives on nutritional recovery challenges and mobile support app preferences in (1) a national panel of oncology dietitians using a web-based cross-sectional survey and (2) survivors with HNC completing treatment within the past 24 months and their nominated caregivers using dyadic semistructured interviews. Descriptive statistics for survey data were synthesized with thematic analysis of interview data to characterize nutrition-related perceptions and intervention preferences; results were integrated, and themes were translated to high-priority main menu domains and subdomains for a mobile app for caregivers.

RESULTS

Surveys were completed by dietitians (n=116, 100%; female n=87, 50%, with >10 years practice experience). Interviews included survivors with HNC (n=15; 12/15, 80% male, and 6/15, 40% with oropharynx cancer) and their caregivers (n=13; 11/13, 85% female, and 10/13, 77% spouses). Dietitians, survivors, and caregivers perceived that the majority of nutritional concerns assessed (eg, swallowing, feeding tube management, weight maintenance, and caregiver distress about nutrition) were very or extremely important to caregiving in the 6 months following treatment conclusion. The caregiving tasks rated highest in importance by dietitians included tracking nutritional concerns (n=113, 97%), working together as a team on nutritional concerns (n=104, 90%), and making care decisions (n=102, 88%). Five themes emerged from dyadic interviews, including types of nutritional challenges faced, that competing symptoms were difficult to separate from nutritional challenges, the emotional challenges related to nutrition and recovery, the diverse set of medical and support tasks taken on by caregivers, and information and resource needs in caregivers. Qualitative interview and survey themes guided the content of the Healthy Eating and Recovery Together (HEART) app with an intake tracker and sections for nutrition recovery support, other competing caregiving tips, peer support, and caregiver self-care.

CONCLUSIONS

Results pinpointed optimal content for a mobile app for caregivers of individuals with HNC and support the acceptability of implementing the HEART app following HNC treatment.

摘要

背景

头颈癌(HNC)幸存者面临着具有挑战性的治疗后果,这些后果可能导致吞咽严重障碍,进而导致体重减轻、营养不良和依赖喂食管。因此,照顾者(提供支持的家人或朋友)经常会遇到令人痛苦的营养护理负担,并且觉得在家里无法提供足够的支持。

目的

这项混合方法研究的目的是开发一款移动支持应用程序,以支持头颈癌护理,重点是治疗后的营养支持。

方法

我们通过以下方式评估了对营养恢复挑战的看法和移动支持应用程序的偏好:(1)使用基于网络的横断面调查,对全国肿瘤营养师小组进行调查;(2)对在过去24个月内完成治疗的头颈癌幸存者及其指定的照顾者进行二元半结构化访谈。对调查数据的描述性统计与访谈数据的主题分析相结合,以描述与营养相关的看法和干预偏好;整合结果,并将主题转化为照顾者移动应用程序的高优先级主菜单领域和子领域。

结果

营养师完成了调查(n = 116,100%;女性n = 87,50%,有超过10年的实践经验)。访谈包括头颈癌幸存者(n = 15;12/15,80%为男性,6/15,40%患有口咽癌)及其照顾者(n = 13;11/13,85%为女性,10/13,77%为配偶)。营养师、幸存者和照顾者认为,所评估的大多数营养问题(如吞咽、喂食管管理、体重维持以及照顾者对营养的困扰)在治疗结束后的6个月内对护理非常或极其重要。营养师认为最重要的护理任务包括跟踪营养问题(n = 113,97%)、就营养问题进行团队协作(n = 104,90%)以及做出护理决策(n = 102,88%)。二元访谈中出现了五个主题,包括所面临的营养挑战类型、难以将相互竞争的症状与营养挑战区分开来、与营养和恢复相关的情感挑战、照顾者承担的各种医疗和支持任务以及照顾者的信息和资源需求。定性访谈和调查主题指导了“共同健康饮食与康复”(HEART)应用程序的内容,该应用程序有一个摄入量跟踪器以及营养恢复支持、其他相互竞争的护理提示、同伴支持和照顾者自我护理等板块。

结论

研究结果确定了一款针对头颈癌患者照顾者的移动应用程序的最佳内容,并支持在头颈癌治疗后实施HEART应用程序的可接受性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/17ce/12172808/50c722d9d309/cancer-v11-e66471-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/17ce/12172808/50c722d9d309/cancer-v11-e66471-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/17ce/12172808/50c722d9d309/cancer-v11-e66471-g001.jpg

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本文引用的文献

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Evolutionary Trends in the Adoption, Adaptation, and Abandonment of Mobile Health Technologies: Viewpoint Based on 25 Years of Research.移动医疗技术的采用、适应和摒弃的演变趋势:基于 25 年研究的观点。
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Mobile app activity engagement by cancer patients and their caregivers informs remote monitoring.癌症患者及其护理人员的移动应用程序活动参与情况可用于远程监测。
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Experiences of financial toxicity among caregivers of cancer patients: a meta-synthesis of qualitative studies.
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