Shin Ji Youn, Chaar Dima, Kedroske Jacob, Vue Rebecca, Chappell Grant, Mazzoli Amanda, Hassett Afton L, Hanauer David A, Park Sun Young, Debra Barton, Choi Sung Won
Department of Media and Information, College of Communication Arts and Sciences, Michigan State University, East Lansing, Michigan, USA.
Department of Biostatistics, School of Public Health, University of Michigan, Ann Arbor, Michigan, USA.
JAMIA Open. 2020 Dec 5;3(4):593-601. doi: 10.1093/jamiaopen/ooaa053. eCollection 2020 Dec.
Family caregiving is an important public health issue, particularly with the aging population. In recent years, mobile health (mHealth) technology has emerged as a potential low-cost, scalable platform to address caregiver support needs, and thereby alleviate the burden on caregivers. This study sought to examine the support needs of family caregivers in their lived experiences of outpatient care to inform the development of a future mHealth intervention.
We conducted 20 semi-structured interviews in 2 outpatient hematopoietic cell transplant (HCT) clinics at a large academic medical center in the Midwestern United States. A thematic analysis was performed to define emerging themes.
Qualitative data analysis identified 5 primary themes that HCT caregivers faced: (I) lifestyle restrictions due to the patient's immunocompromised state; (II) Unmet needs due to limitations in the current resources, including unfamiliar medical tasks without necessary trainings; and (III) caregivers' adaptive strategies, including reformation of social relationships with family and friends. Based on these findings, we suggest 3 design considerations to guide the development of a future mHealth intervention.
The findings herein captured the family caregiver's lived experiences during outpatient care. There was broad agreement that caregiving was challenging and stressful. Thus, effective and scalable interventions to support caregivers are needed. This study provided data to guide the content and design of a future mHealth intervention in the outpatient setting.
家庭照护是一个重要的公共卫生问题，尤其是在人口老龄化的背景下。近年来，移动健康（mHealth）技术已成为一个潜在的低成本、可扩展的平台，以满足照护者的支持需求，从而减轻照护者的负担。本研究旨在探讨家庭照护者在门诊护理实际体验中的支持需求，为未来移动健康干预措施的开发提供参考。
我们在美国中西部一家大型学术医疗中心的2家门诊造血细胞移植（HCT）诊所进行了20次半结构化访谈。采用主题分析法来确定新出现的主题。
定性数据分析确定了造血细胞移植照护者面临的5个主要主题：（I）由于患者免疫功能低下状态导致的生活方式限制；（II）由于当前资源有限而未满足的需求，包括未经必要培训的不熟悉的医疗任务；以及（III）照护者的适应策略，包括与家人和朋友社会关系的重塑。基于这些发现，我们提出了3个设计考量，以指导未来移动健康干预措施的开发。
本研究结果记录了家庭照护者在门诊护理期间的实际体验。大家普遍认为照护具有挑战性且压力大。因此，需要有效的、可扩展的干预措施来支持照护者。本研究提供了数据，以指导未来门诊环境中移动健康干预措施的内容和设计。
