Bateman Daniel Robert, Brady Erin, Wilkerson David, Yi Eun-Hye, Karanam Yamini, Callahan Christopher M
Indiana University Center for Aging Research, Indianapolis, IN, United States.
Department of Psychiatry, Indiana University School of Medicine, Indianapolis, IN, United States.
JMIR Res Protoc. 2017 Apr 10;6(4):e56. doi: 10.2196/resprot.6904.
In the United States, over 15 million informal caregivers provide unpaid care to people with Alzheimer disease (AD). Compared with others in their age group, AD caregivers have higher rates of stress, and medical and psychiatric illnesses. Psychosocial interventions improve the health of caregivers. However, constraints of time, distance, and availability inhibit the use of these services. Newer online technologies, such as social media, online groups, friendsourcing, and crowdsourcing, present alternative methods of delivering support. However, limited work has been done in this area with caregivers.
The primary aims of this study were to determine (1) the feasibility of innovating peer support group work delivered through social media with friendsourcing, (2) whether the intervention provides an acceptable method for AD caregivers to obtain support, and (3) whether caregiver outcomes were affected by the intervention. A Facebook app provided support to AD caregivers through collecting friendsourced answers to caregiver questions from participants' social networks. The study's secondary aim was to descriptively compare friendsourced answers versus crowdsourced answers.
We recruited AD caregivers online to participate in a 6-week-long asynchronous, online, closed group on Facebook, where caregivers received support through moderator prompts, group member interactions, and friendsourced answers to caregiver questions. We surveyed and interviewed participants before and after the online group to assess their needs, views on technology, and experience with the intervention. Caregiver questions were pushed automatically to the participants' Facebook News Feed, allowing participants' Facebook friends to see and post answers to the caregiver questions (Friendsourced answers). Of these caregiver questions, 2 were pushed to crowdsource workers through the Amazon Mechanical Turk platform. We descriptively compared characteristics of these crowdsourced answers with the friendsourced answers.
In total, 6 AD caregivers completed the initial online survey and semistructured telephone interview. Of these, 4 AD caregivers agreed to participate in the online Facebook closed group activity portion of the study. Friendsourcing and crowdsourcing answers to caregiver questions had similar rates of acceptability as rated by content experts: 90% (27/30) and 100% (45/45), respectively. Rates of emotional support and informational support for both groups of answers appeared to trend with the type of support emphasized in the caregiver question (emotional vs informational support question). Friendsourced answers included more shared experiences (20/30, 67%) than did crowdsourced answers (4/45, 9%).
We found an asynchronous, online, closed group on Facebook to be generally acceptable as a means to deliver support to caregivers of people with AD. This pilot is too small to make judgments on effectiveness; however, results trended toward an improvement in caregivers' self-efficacy, sense of support, and perceived stress, but these results were not statistically significant. Both friendsourced and crowdsourced answers may be an acceptable way to provide informational and emotional support to caregivers of people with AD.
在美国,超过1500万非正式护理人员为阿尔茨海默病(AD)患者提供无偿护理。与同年龄组的其他人相比,AD护理人员承受压力、患有医学疾病和精神疾病的比例更高。心理社会干预可改善护理人员的健康状况。然而,时间、距离和可及性等限制因素阻碍了这些服务的使用。较新的在线技术,如社交媒体、在线群组、朋友外包和众包,提供了提供支持的替代方法。然而,在这一领域针对护理人员开展的工作有限。
本研究的主要目的是确定:(1)通过社交媒体和朋友外包创新同伴支持小组工作的可行性;(2)该干预措施是否为AD护理人员提供了一种可接受的获得支持的方法;(3)护理人员的结局是否受到该干预措施的影响。一款Facebook应用程序通过从参与者的社交网络收集朋友外包的护理人员问题答案,为AD护理人员提供支持。该研究的次要目的是对朋友外包答案与众包答案进行描述性比较。
我们在网上招募AD护理人员,让他们参与一个为期6周的Facebook异步在线封闭群组,护理人员通过主持人提示、小组成员互动以及朋友外包的护理人员问题答案获得支持。我们在在线群组前后对参与者进行调查和访谈,以评估他们的需求、对技术的看法以及干预体验。护理人员的问题会自动推送到参与者的Facebook新闻推送中,使参与者的Facebook朋友能够看到并发布护理人员问题的答案(朋友外包答案)。在这些护理人员问题中,有2个通过亚马逊土耳其机器人平台推送给众包工作者。我们对这些众包答案的特征与朋友外包答案进行了描述性比较。
共有6名AD护理人员完成了初始在线调查和半结构化电话访谈。其中,4名AD护理人员同意参与该研究的Facebook在线封闭群组活动部分。内容专家对护理人员问题的朋友外包答案与众包答案的可接受率相似,分别为90%(27/30)和100%(45/45)。两组答案的情感支持率和信息支持率似乎与护理人员问题中强调的支持类型(情感支持问题与信息支持问题)相关。朋友外包答案中包含的共同经历(20/30,67%)比众包答案(4/45,9%)更多。
我们发现Facebook上的一个异步在线封闭群组作为向AD患者护理人员提供支持的一种方式总体上是可接受的。该试点规模太小,无法对有效性做出判断;然而,结果显示护理人员的自我效能感、支持感和感知压力有改善趋势,但这些结果无统计学意义。朋友外包答案与众包答案都可能是为AD患者护理人员提供信息和情感支持的可接受方式。