Roles in the Discussion

2020, Proceedings of the ACM on Human-Computer Interaction

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30 pages

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Social computing provides a variety of challenges and opportunities for people who are experiencing cognitive decline. Following a recent diagnosis of dementia, older adults sometimes engage in online communities designated for people with dementia. In this work, we analyzed all original posts from a seven-year period on a forum for persons with dementia to understand 1) who posts in this forum and 2) what kinds of social support posters seek to gain from this engagement. Our analyses indicate that, in addition to people with dementia, a variety of dementia-related stakeholders create original posts in this forum. Our results suggest that seeking and offering social support are key activities for all forum users, not just those with dementia for whom the forum was designated. Given these findings, we offer design implications for online spaces for vulnerable communities, with a focus on design that allows for external stakeholder participation while still maintaining the privacy and...

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Table 1. Definitions and examples of support reliability. Codes for the types of social support achieved a substantial 75% agreement among raters (Cohen’s kappa, k -796). We then further revised the codebook based on codes and data for which the study team did not reach agreement. The first author then conducted a final round of coding which was used for generating the quantitative analysis of type and frequency of posts used to provide background and context in this article.

Table 2. Frequency of Posts from Specific Posters I a a EE IEEE EES GQ when PWDs are newly diagnosed, they generally live alone or with a partner, without the need of a caregiver, and can mostly engage with the world independently. Thus, there is a need for newly diagnosed PWDs to have a place where they can collectively learn from and support each other. In this section, we describe the findings from our qualitative analysis of the original posts from a forum specifically labeled as being for PWD. In such a forum, one might expect that original posters would all be PWD, as requested in the forum description. What we found, however, were a variety of roles represented in these original posters. Additiona offered varied types of support as described in Table 1. While we a with the intent of understanding how the social support offered y, these posters asked for and pproached this project initially and requested by people with other chronic conditions (e.g.,[51, 81? ]) mapped to a space for PWD, we did not expect to find the variation we observed in the roles and engagement across the forum. We leave open for the future an examination of responses to these original posts, noting that here we are most interested in those people who took the time and effort to initiate a new conversation through the intentional act of creating an original post, and what their intentions were in posting. Roles in the Discussion: An Analysis of Social Support in an Online Forum for People with Dementia

Table 3. Frequency of Specific Support for Difference Roles types of social support that were defined in Table 1. Although posters in the unknown category may be PWD or have a relationship to PWD that could be inferred from other posts (e.g., comments and replies), we chose to classify them as unknown if someone reading only the original post under analysis would not be able to infer the relationship. The key issue here is in the way that many people experience online forums by taking the original post as a self-contained unit, particularly those users of the forum who may be less technologically savvy and unfamiliar with online forums.

Jazette Johnson, et al. roups, which are represented by circles in Figure 2. Group 1, which we consider the focus of the 10del, consists of PWD, Unidagnosed, and DT. We grouped these roles together due to the circle f information that they provide. Each of these individuals have or will have similar experiences at yme point and each of them can benefit directly from others’ experiences. Group 2 includes family, ‘iends, and caregivers, and Group 3 is the grouping of individuals that are unknown or the general opulation, meaning their relationship to the disease is unidentifiable. The arrows of the model »present the flow of posts from one type of user to another. For instance, (following the dashed rrows in Figure 2) when a post is made by a person in Group 1, they are required to set their rivacy settings before the content posts to the forum. The default post privacy setting will be set by WD during sign up, but PWD will have the option to change to one of the following: 1) FFC, which 1eans the post will only be viewed by Group 2 (FFC), moderators, and other individuals in Group 2) PWD only, which makes the content private to everyone except Groups 1 and moderators, nd 3) public, which will allow everyone to access the posts and engage. Allowing Group 1 to set oecific privacy settings to their post allows them to express their issues about family, friends, and aregivers without worrying if their loved one will see it and decreases the potential for attacks by utside members that could be made on their posts. Tha-ealtid na vranvracante tha flaczratintarmatian tram the BEMs and the nizhliie fA the DV Dic Wrhan

Fig. 2. Design Model — Dashed lines represents the flow of information/post to the public based on PWDs post privacy settings. Solid lines represent the flow of information/posts from the public (i.e. FFC Unknown) to the PWDs Roles in the Discussion: An Analysis of Social Support in an Online Forum for People with Dementia