YouTube as an On-line Disability Self-Management Tool in Persons With Spinal Cord Injury

Libin, Alexander; Schladen, Manon Maitland; Ljungberg, Inger; Tsai, Brenda; Jacobs, Sydney; Reinauer, Kendra; Minnick, Shannon; Spungen, Miriam; Groah, Suzanne L.

doi:10.1310/sci1603-84

Cited by 14 publications

(7 citation statements)

References 4 publications

(5 reference statements)

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“…YouTube videos related to the chronic cerebrospinal venous insufficiency "liberation" procedure (Mazanderani, O'Neill, & Powell, 2013). (Libin et al, 2011).…”

Section: Community Was Evidenced Through Posts and Comments Onmentioning

confidence: 99%

Community building and knowledge sharing by individuals with disabilities using social media

Sweet

LeBlanc

Stough

et al. 2019

Computer Assisted Learning

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The use of social media to share information, enhance learning, and connect with an online community has grown rapidly over the past 10 years. As social media becomes a more common tool in both formal and informal education, it is imperative to understand how it is used by individuals with disabilities. Through a systematic study of the literature, 215 articles on social media used by individuals with disabilities were selected and 29 selected for in-depth thematic analysis. Six major themes were identified: community, cyberbullying, self-esteem, self-determination, access to technology, and accessibility. To confirm these six categories, we expanded our search, yielding an additional 30 articles, for a total 59 articles reviewed in-depth. Interactions between individuals with disabilities within online communities often had the goal of acquiring knowledge or learning new information. A communities of practice theoretical framework is used to discuss interactions among the elements of social media design, learning, and the building of community by individuals with disabilities.

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“…YouTube videos related to the chronic cerebrospinal venous insufficiency "liberation" procedure (Mazanderani, O'Neill, & Powell, 2013). (Libin et al, 2011).…”

Section: Community Was Evidenced Through Posts and Comments Onmentioning

confidence: 99%

Community building and knowledge sharing by individuals with disabilities using social media

Sweet

LeBlanc

Stough

et al. 2019

Computer Assisted Learning

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“…Similar results were produced by a 2014 survey of 500 veterans with SCI [19]. For those with internet access, educational videos addressing management of SCI secondary conditions (eg, managing or preventing pressure ulcers or pain) have increased health-management knowledge and encouraged behavior changes (eg, the adoption of hypnosis) [20,21]. E-learning modules on topics such as pressure ulcer or bladder management have been linked to increased management knowledge [22][23][24] and internet usage has generally been associated with emotional health [25,26].…”

Section: Virtual Self-management Supportmentioning

confidence: 63%

“…However, the online health information landscape is quickly changing; more recent studies of forum discussions of care for HIV, for example, have found information posted by online users to be of "good quality" when evaluated by medical professionals [45]. Trustworthy sources of information about SCI are, moreover, increasingly available online (eg, [20][21][22]46]).…”

Section: Principal Findingsmentioning

confidence: 99%

Participatory Design of an Online Self-Management Tool for Users With Spinal Cord Injury: Qualitative Study (Preprint)

Allin¹,

Shepherd²,

Tomasone³

et al. 2017

Preprint

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Background: Rehospitalization rates resulting from secondary conditions in persons with spinal cord injuries (SCI) are high. Self-management programs for many chronic conditions have been associated with decreases in hospital readmissions. However, in the SCI community, evidence suggests that satisfaction with traditional self-management programs is low. Users with SCI have indicated preference for programs that are online (rather than in-person), that target SCI-specific concerns, and are led by peers with SCI. There is currently no program with all of these features, which addresses self-management of secondary conditions after SCI.Objective: The aim of this study was to provide details of a participatory design (PD) process for an internet-mediated self-management program for users with SCI (called SCI & U) and illustrate how it has been used to define design constraints and solutions.Methods: Users were involved in development as codesigners, codevelopers, and key informants. Codesigners and codevelopers were recruited from consumer advocacy groups and worked with a core development team. Key informants were recruited from geographically distributed advocacy groups to form a product advisory council that met regularly with the core team. During meetings, codesigners and informants walked through stages of work that typify PD processes such as exploration, discovery, and prototyping. This paper details the process by analyzing 10 meetings that took place between August 2015 and May 2016. Meetings were recorded, transcribed, and subjected to an inductive thematic analysis; resulting themes were organized according to their relationship to PD stages. Results:A total of 16 individuals participated in meeting discussions, including 7 researchers and 9 persons with SCI from 4 Canadian provinces. Themes of trust, expertise, and community emerged in every group discussion. The exploration stage revealed interest in online self-management resources coupled with concerns about information credibility. In general, participants indicated that they felt more confident with information received from trusted, in-person sources (eg, peers or health care professionals) than information found online. The discovery stage saw participants propose and discuss concepts to filter credible information and highlight community expertise, namely (1) a community-curated resource database, (2) online information navigators, and (3) group chats with peers. Several tools and techniques were collectively prototyped in an effort to foster trust and community; these are illustrated in the Results section. Conclusions:A PD process engaging users as codesigners, codevelopers, and informants can be used to identify design concerns and prototype online solutions to promote self-management after SCI. Future work will assess the usability of the collectively designed tools among a broad population of Canadians with SCI and the tools' impact on self-efficacy and health.

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“…Similar results were produced by a 2014 survey of 500 veterans with SCI [ 19 ]. For those with internet access, educational videos addressing management of SCI secondary conditions (eg, managing or preventing pressure ulcers or pain) have increased health-management knowledge and encouraged behavior changes (eg, the adoption of hypnosis) [ 20 , 21 ]. E-learning modules on topics such as pressure ulcer or bladder management have been linked to increased management knowledge [ 22 - 24 ] and internet usage has generally been associated with emotional health [ 25 , 26 ].…”

Section: Introductionmentioning

confidence: 99%

Participatory Design of an Online Self-Management Tool for Users With Spinal Cord Injury: Qualitative Study

Allin¹,

Shepherd²,

Tomasone³

et al. 2018

JMIR Rehabil Assist Technol

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BackgroundRehospitalization rates resulting from secondary conditions in persons with spinal cord injuries (SCI) are high. Self-management programs for many chronic conditions have been associated with decreases in hospital readmissions. However, in the SCI community, evidence suggests that satisfaction with traditional self-management programs is low. Users with SCI have indicated preference for programs that are online (rather than in-person), that target SCI-specific concerns, and are led by peers with SCI. There is currently no program with all of these features, which addresses self-management of secondary conditions after SCI.ObjectiveThe aim of this study was to provide details of a participatory design (PD) process for an internet-mediated self-management program for users with SCI (called SCI & U) and illustrate how it has been used to define design constraints and solutions.MethodsUsers were involved in development as codesigners, codevelopers, and key informants. Codesigners and codevelopers were recruited from consumer advocacy groups and worked with a core development team. Key informants were recruited from geographically distributed advocacy groups to form a product advisory council that met regularly with the core team. During meetings, codesigners and informants walked through stages of work that typify PD processes such as exploration, discovery, and prototyping. This paper details the process by analyzing 10 meetings that took place between August 2015 and May 2016. Meetings were recorded, transcribed, and subjected to an inductive thematic analysis; resulting themes were organized according to their relationship to PD stages.ResultsA total of 16 individuals participated in meeting discussions, including 7 researchers and 9 persons with SCI from 4 Canadian provinces. Themes of trust, expertise, and community emerged in every group discussion. The exploration stage revealed interest in online self-management resources coupled with concerns about information credibility. In general, participants indicated that they felt more confident with information received from trusted, in-person sources (eg, peers or health care professionals) than information found online. The discovery stage saw participants propose and discuss concepts to filter credible information and highlight community expertise, namely (1) a community-curated resource database, (2) online information navigators, and (3) group chats with peers. Several tools and techniques were collectively prototyped in an effort to foster trust and community; these are illustrated in the Results section.ConclusionsA PD process engaging users as codesigners, codevelopers, and informants can be used to identify design concerns and prototype online solutions to promote self-management after SCI. Future work will assess the usability of the collectively designed tools among a broad population of Canadians with SCI and the tools’ impact on self-efficacy and health.

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YouTube as an On-line Disability Self-Management Tool in Persons With Spinal Cord Injury

Cited by 14 publications

References 4 publications

Community building and knowledge sharing by individuals with disabilities using social media

Community building and knowledge sharing by individuals with disabilities using social media

Participatory Design of an Online Self-Management Tool for Users With Spinal Cord Injury: Qualitative Study (Preprint)

Participatory Design of an Online Self-Management Tool for Users With Spinal Cord Injury: Qualitative Study

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