Collaborative help in chronic disease management

Huh, Jina; Ackerman, Mark S.

doi:10.1145/2145204.2145331

Cited by 98 publications

(56 citation statements)

References 19 publications

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“…We find that parents engage in what Huh and Ackerman [20] referred to as "illness trajectory alignment" as they looked for parents whose children suffered from similar conditions and who maintained similar illness "medical models" [28]. Parents collectively engage in collaborative sensemaking [35] of their children's medical conditions.…”

Section: Facebook Groups For Advocacymentioning

confidence: 99%

Networked Empowerment on Facebook Groups for Parents of Children with Special Needs

Ammari

Schoenebeck

2015

Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems

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Theories of empowerment explain how people gain personal and political control to take action to improve their lives. However, empowerment theories were developed prior to the Internet and fail to account for the speed and scale that people can find one another online. One domain where empowerment is critical is caring for children with special needs, in which parents are required to navigate a complex maze of services and processes to access care for their child. We conducted 43 interviews with parents of children with special needs to investigate whether using social media sites helps them to perform this caregiving work. Critically, parents are able to do this through almost real-time access to other parents on Facebook. This work introduces the concept of networked empowerment, that describes how parents find other parents, access resources, and explore new ways for promoting health advocacy among caregivers at a local and national level. We conclude with design implications for facilitating faster and better access to information and support for caregivers.

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Section: Facebook Groups For Advocacymentioning

confidence: 99%

Networked Empowerment on Facebook Groups for Parents of Children with Special Needs

Ammari

Schoenebeck

2015

Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems

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“…A recent study by Huh and Ackerman of another diabetes forum, dLife.com, specifically examined individuals' interactions around seeking and receiving help [18]. These researchers suggested that individuals operationalize their experiences using their personal illness trajectories.…”

Section: Information Sharing Within Online Health Forumsmentioning

confidence: 99%

Collective Sensemaking in Online Health Forums

Mamykina

Nakikj

Elhadad

2015

Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems

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Online health communities collect vast amounts of information and opinions in regards to health and wellness management. However, these opinions are usually stored within lengthy and loosely structured discussion threads; synthesizing information in these threads can be challenging. In this mixed-methods study, grounded in the theoretical perspective of collective sensemaking, we examined patterns of communication within an online diabetes community TuDiabetes. The results of the study suggest that members of TuDiabetes often construct shared meaning through deep discussions, back and forth negotiation of perspectives, and resolution of conflicts in opinions. However, unlike participants of other sensemaking communities, members of TuDiabetes often value multiplicity of opinions rather than consensus. We use study results to draw implications for the design of computing platforms for facilitating collective sensemaking that promote construction of shared knowledge yet embrace diversity of opinions.

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“…For example, Maloney-Krichmar & Preece provide an in-depth analysis of a community for people with knee injuries [22]. Huh and Ackerman focus on a lifelong condition -diabetes -and how it is discussed in a particular online diabetes support community [14]. Newman et al move closer towards our goals in their study of people's perceptions of Facebook as a place for sharing health information, especially as they highlight how and why people choose to use social networking sites for health concerns [24].…”

Section: Online Health Communitiesmentioning

confidence: 99%

Life transitions and online health communities

Massimi

Bender

Witteman

et al. 2014

Proceedings of the 17th ACM Conference on Computer Supported Cooperative Work &Amp; Social Computing

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Online health communities are places where people can come together in order to exchange social support at a particular point in an individual's life. There are, however, relatively few accounts that look across multiple communities across the lifespan. In this paper, we reflect on four case studies of research on different online health communities in order to identify patterns in how individuals selectively adopt, use, and disengage from these communities throughout their lives. We argue that users leaving communities is not necessarily a failing of the site's design or purpose; rather, it is a logical reaction to changing life circumstances. In characterizing this pattern, we contribute a set of implications for design and management that bear consideration by online community designers, developers, moderators, and end users. Ultimately this may lead to a smoother transition from community to community and ensure that social support needs are being met more consistently in response to changing life circumstances.

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Collaborative help in chronic disease management

Cited by 98 publications

References 19 publications

Networked Empowerment on Facebook Groups for Parents of Children with Special Needs

Networked Empowerment on Facebook Groups for Parents of Children with Special Needs

Collective Sensemaking in Online Health Forums

Life transitions and online health communities

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