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      Comparing Crowdsourcing and Friendsourcing: A Social Media-Based Feasibility Study to Support Alzheimer Disease Caregivers

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          Abstract

          Background

          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.

          Objective

          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.

          Methods

          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.

          Results

          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%).

          Conclusions

          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.

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          Most cited references52

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          Conducting behavioral research on Amazon's Mechanical Turk.

          Amazon's Mechanical Turk is an online labor market where requesters post jobs and workers choose which jobs to do for pay. The central purpose of this article is to demonstrate how to use this Web site for conducting behavioral research and to lower the barrier to entry for researchers who could benefit from this platform. We describe general techniques that apply to a variety of types of research and experiments across disciplines. We begin by discussing some of the advantages of doing experiments on Mechanical Turk, such as easy access to a large, stable, and diverse subject pool, the low cost of doing experiments, and faster iteration between developing theory and executing experiments. While other methods of conducting behavioral research may be comparable to or even better than Mechanical Turk on one or more of the axes outlined above, we will show that when taken as a whole Mechanical Turk can be a useful tool for many researchers. We will discuss how the behavior of workers compares with that of experts and laboratory subjects. Then we will illustrate the mechanics of putting a task on Mechanical Turk, including recruiting subjects, executing the task, and reviewing the work that was submitted. We also provide solutions to common problems that a researcher might face when executing their research on this platform, including techniques for conducting synchronous experiments, methods for ensuring high-quality work, how to keep data private, and how to maintain code security.
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            The MOS social support survey.

            This paper describes the development and evaluation of a brief, multidimensional, self-administered, social support survey that was developed for patients in the Medical Outcomes Study (MOS), a two-year study of patients with chronic conditions. This survey was designed to be comprehensive in terms of recent thinking about the various dimensions of social support. In addition, it was designed to be distinct from other related measures. We present a summary of the major conceptual issues considered when choosing items for the social support battery, describe the items, and present findings based on data from 2987 patients (ages 18 and older). Multitrait scaling analyses supported the dimensionality of four functional support scales (emotional/informational, tangible, affectionate, and positive social interaction) and the construction of an overall functional social support index. These support measures are distinct from structural measures of social support and from related health measures. They are reliable (all Alphas greater than 0.91), and are fairly stable over time. Selected construct validity hypotheses were supported.
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              Caregiving as a risk factor for mortality: the Caregiver Health Effects Study.

              There is strong consensus that caring for an elderly individual with disability is burdensome and stressful to many family members and contributes to psychiatric morbidity. Researchers have also suggested that the combination of loss, prolonged distress, the physical demands of caregiving, and biological vulnerabilities of older caregivers may compromise their physiological functioning and increase their risk for physical health problems, leading to increased mortality. To examine the relationship between caregiving demands among older spousal caregivers and 4-year all-cause mortality, controlling for sociodemographic factors, prevalent clinical disease, and subclinical disease at baseline. Prospective population-based cohort study, from 1993 through 1998 with an average of 4.5 years of follow-up. Four US communities. A total of 392 caregivers and 427 noncaregivers aged 66 to 96 years who were living with their spouses. Four-year mortality, based on level of caregiving: (1) spouse not disabled; (2) spouse disabled and not helping; (3) spouse disabled and helping with no strain reported; or(4) spouse disabled and helping with mental or emotional strain reported. After 4 years of follow-up, 103 participants (12.6%) died. After adjusting for sociodemographic factors, prevalent disease, and subclinical cardiovascular disease, participants who were providing care and experiencing caregiver strain had mortality risks that were 63% higher than noncaregiving controls (relative risk [RR], 1.63; 95% confidence interval [CI], 1.00-2.65). Participants who were providing care but not experiencing strain (RR, 1.08; 95 % CI, 0.61-1.90) and those with a disabled spouse who were not providing care (RR, 1.37; 95% CI, 0.73-2.58) did not have elevated adjusted mortality rates relative to the noncaregiving controls. Our study suggests that being a caregiver who is experiencing mental or emotional strain is an independent risk factor for mortality among elderly spousal caregivers. Caregivers who report strain associated with caregiving are more likely to die than noncaregiving controls.
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                Author and article information

                Contributors
                Journal
                JMIR Res Protoc
                JMIR Res Protoc
                ResProt
                JMIR Research Protocols
                JMIR Publications (Toronto, Canada )
                1929-0748
                April 2017
                10 April 2017
                : 6
                : 4
                : e56
                Affiliations
                [1] 1Indiana University Center for Aging Research Indianapolis, INUnited States
                [2] 2Department of Psychiatry Indiana University School of Medicine Indianapolis, INUnited States
                [3] 3Regenstrief Institute Indianapolis, INUnited States
                [4] 4Indiana Alzheimer Disease Center Indianapolis, INUnited States
                [5] 5Department of Human-Centered Computing School of Informatics and Computing Indiana University Purdue University Indianapolis Indianapolis, INUnited States
                [6] 6School of Social Work Indiana University Indianapolis, INUnited States
                [7] 7Department of Medicine Indiana University School of Medicine Indianapolis, INUnited States
                Author notes
                Corresponding Author: Daniel Robert Bateman darbate@ 123456iupui.edu
                Author information
                http://orcid.org/0000-0002-7415-5748
                http://orcid.org/0000-0002-8197-5197
                http://orcid.org/0000-0002-7841-7047
                http://orcid.org/0000-0002-1094-1205
                http://orcid.org/0000-0002-9483-3040
                http://orcid.org/0000-0002-4617-6672
                Article
                v6i4e56
                10.2196/resprot.6904
                5404144
                28396304
                adb14783-6101-48a5-bfac-8205bff38ff7
                ©Daniel Robert Bateman, Erin Brady, David Wilkerson, Eun-Hye Yi, Yamini Karanam, Christopher M Callahan. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 10.04.2017.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org, as well as this copyright and license information must be included.

                History
                : 30 October 2016
                : 22 December 2016
                : 2 February 2017
                : 19 March 2017
                Categories
                Original Paper
                Original Paper

                alzheimer disease,alzheimer disease and related dementias,caregivers,mobile health,social media,crowdsourcing,friendsourcing,emotional support,informational support,online support

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