Professional Communication by Unknown

Author:Unknown
Language: eng
Format: epub
ISBN: 9783030416683
Publisher: Springer International Publishing

4 Story-Call: Telehealth to Dementia Caregivers

Story-Call, our telehealth project with informal dementia caregivers, incorporates advocacy and activism on behalf of caregivers and, through that work, is meant to enhance the quality of life for persons with dementia (henceforth PWD). It began with a pilot study recruiting caregivers who brought their PWD to day care or respite care three or more times a week, to see if they would use and might enjoy a mobile phone app allowing them to video-record 60-second reports on successful interactions reporting on difficult caregiving situations (Davis et al. 2014, 2015). While four of the five people recruited who used the app reported satisfaction, we quickly learned that recruitment could be a major issue, so we decided that we would need to expand the number of potential stakeholders as consultants and develop materials and presentations for multiple languages and different research sites, including churches and grocery stores with high-minority traffic. We also realised that we needed to increase participants’ confidence about research ethics and that their information was completely secure. Dementia is stigmatised in many communities and while caregivers gave their consent to sharing information with other caregivers, they did not want their video recordings to go beyond such an in-group network.

As its second phase, Story-Call was funded by the US Veteran Administration’s (VA) Health Research & Development division. Story-Call was transferred as an app to mini-iPad tablets. Whilst overall evaluation of the app is currently ongoing, we have collected responses from two groups of stakeholders: caregiver participants and from focus groups comprising a community-based advisory group and VA researchers as additional advocates and consultants. Again, recruiting was difficult: of the 669 VA records identifying veterans with dementia, only 112 were eligible to participate. A total of 20 of that group consented, and 18 were recorded, in what is now a VA-exclusive archive of 97 videos on 11 topics, which are currently being studied and interpreted. The Story-Call App comprises two main components: the web server and the mobile application.

Table 8.2 is an example from a topic from the Story-Call App titled ‘Asking the same questions, telling the same story’, to which eight women responded. The question is as follows: ‘My dad asks me where we live every five minutes. What can I do?’Table 8.2Gesture and text in Story-Call analysis

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