The social consequences of stigma-related self-concealment after acquired brain injury

AbstractThis article reviews current literature on social support and friendship, loneliness and social isolation, and discusses these in the context of disability and specifically acquired brain injury. The examination provides a backdrop for considering interventions which aim to promote or regenerate friendships in the lives of people with this injury. The social consequences for individuals who have sustained an acquired brain injury have been well documented and are briefly reviewed. An understanding of the social support and friendship literature, reviewed in this article, is helpful for practitioners in designing interventions in the lives of this group of people, whose limited friendship and social support systems compromise quality of life and inclusion in the community. The article describes interventions that have been attempted to facilitate network building and friendship development for vulnerable or disadvantaged people in a wide range of contexts. The role of informal support systems is also discussed. A critique of these interventions is also presented and the conclusion reached is that while such models are not perfect and are often not rigorously evaluated, it is critical to provide assistance in order to achieve genuine social inclusion of people with acquired brain injury. It is their human right.

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Coproducing Knowledge of the Implementation of Complex Digital Health Interventions for Adults with Acquired Brain Injury and their Communication Partners: Protocol for a Mixed Methods Study

JMIR Research Protocols ◽

10.2196/35080 ◽

2022 ◽

Vol 11 (1) ◽

pp. e35080

Author(s):

Melissa Miao ◽

Emma Power ◽

Rachael Rietdijk ◽

Deborah Debono ◽

Melissa Brunner ◽

...

Keyword(s):

Brain Injury ◽

Focus Groups ◽

Implementation Research ◽

Research Evidence ◽

Digital Health ◽

Acquired Brain Injury ◽

Social Brain ◽

Web Based ◽

The Social ◽

Communication Partners

Background The Social Brain Toolkit, conceived and developed in partnership with stakeholders, is a novel suite of web-based communication interventions for people with brain injury and their communication partners. To support effective implementation, the developers of the Social Brain Toolkit have collaborated with people with brain injury, communication partners, clinicians, and individuals with digital health implementation experience to coproduce new implementation knowledge. In recognition of the equal value of experiential and academic knowledge, both types of knowledge are included in this study protocol, with input from stakeholder coauthors. Objective This study aims to collaborate with stakeholders to prioritize theoretically based implementation targets for the Social Brain Toolkit, understand the nature of these priorities, and develop targeted implementation strategies to address these priorities, in order to support the Social Brain Toolkit’s implementation. Methods Theoretically underpinned by the Nonadoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework of digital health implementation, a maximum variation sample (N=35) of stakeholders coproduced knowledge of the implementation of the Social Brain Toolkit. People with brain injury (n=10), communication partners (n=11), and clinicians (n=5) participated in an initial web-based prioritization survey based on the NASSS framework. Survey completion was facilitated by plain English explanations and accessible captioned videos developed through 3 rounds of piloting. A speech-language pathologist also assisted stakeholders with brain injury to participate in the survey via video teleconference. Participants subsequently elaborated on their identified priorities via 7 web-based focus groups, in which researchers and stakeholders exchanged stakeholder perspectives and research evidence from a concurrent systematic review. Stakeholders were supported to engage in focus groups through the use of visual supports and plain English explanations. Additionally, individuals with experience in digital health implementation (n=9) responded to the prioritization survey questions via individual interview. The results will be deductively analyzed in relation to the NASSS framework in a coauthorship process with people with brain injury, communication partners, and clinicians. Results Ethical approval was received from the University of Technology Sydney Health and Medical Research Ethics Committee (ETH20-5466) on December 15, 2020. Data were collected from April 13 to November 18, 2021. Data analysis is currently underway, with results expected for publication in mid-2022. Conclusions In this study, researchers supported individuals with living experience of acquired brain injury, of communicating with or clinically supporting someone post injury, and of digital health implementation, to directly access and leverage the latest implementation research evidence and theory. With this support, stakeholders were able to prioritize implementation research targets, develop targeted implementation solutions, and coauthor and publish new implementation findings. The results will be used to optimize the implementation of 3 real-world, evidence-based interventions and thus improve the outcomes of people with brain injury and their communication partners. International Registered Report Identifier (IRRID) DERR1-10.2196/35080

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Activity resumption after acquired brain injury: the influence of the social network as described by social workers

Disability and Rehabilitation ◽

10.1080/09638288.2019.1652855 ◽

2019 ◽

pp. 1-8

Author(s):

Sandra Jellema ◽

Sabine van Erp ◽

Maria W. G. Nijhuis-van der Sanden ◽

Rob van der Sande ◽

Esther M. J. Steultjens

Keyword(s):

Social Network ◽

Brain Injury ◽

Social Workers ◽

Acquired Brain Injury ◽

The Social

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Coproducing Knowledge of the Implementation of Complex Digital Health Interventions for Adults with Acquired Brain Injury and their Communication Partners: Protocol for a Mixed Methods Study (Preprint)

10.2196/preprints.35080 ◽

2021 ◽

Author(s):

Melissa Miao ◽

Emma Power ◽

Rachael Rietdijk ◽

Deborah Debono ◽

Melissa Brunner ◽

...

Keyword(s):

Brain Injury ◽

Focus Groups ◽

Implementation Research ◽

Research Evidence ◽

Digital Health ◽

Acquired Brain Injury ◽

Social Brain ◽

Web Based ◽

The Social ◽

Communication Partners

BACKGROUND The Social Brain Toolkit, conceived and developed in partnership with stakeholders, is a novel suite of web-based communication interventions for people with brain injury and their communication partners. To support effective implementation, the developers of the Social Brain Toolkit have collaborated with people with brain injury, communication partners, clinicians, and individuals with digital health implementation experience to coproduce new implementation knowledge. In recognition of the equal value of experiential and academic knowledge, both types of knowledge are included in this study protocol, with input from stakeholder coauthors. OBJECTIVE This study aims to collaborate with stakeholders to prioritize theoretically based implementation targets for the Social Brain Toolkit, understand the nature of these priorities, and develop targeted implementation strategies to address these priorities, in order to support the Social Brain Toolkit’s implementation. METHODS Theoretically underpinned by the Nonadoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework of digital health implementation, a maximum variation sample (N=35) of stakeholders coproduced knowledge of the implementation of the Social Brain Toolkit. People with brain injury (n=10), communication partners (n=11), and clinicians (n=5) participated in an initial web-based prioritization survey based on the NASSS framework. Survey completion was facilitated by plain English explanations and accessible captioned videos developed through 3 rounds of piloting. A speech-language pathologist also assisted stakeholders with brain injury to participate in the survey via video teleconference. Participants subsequently elaborated on their identified priorities via 7 web-based focus groups, in which researchers and stakeholders exchanged stakeholder perspectives and research evidence from a concurrent systematic review. Stakeholders were supported to engage in focus groups through the use of visual supports and plain English explanations. Additionally, individuals with experience in digital health implementation (n=9) responded to the prioritization survey questions via individual interview. The results will be deductively analyzed in relation to the NASSS framework in a coauthorship process with people with brain injury, communication partners, and clinicians. RESULTS Ethical approval was received from the University of Technology Sydney Health and Medical Research Ethics Committee (ETH20-5466) on December 15, 2020. Data were collected from April 13 to November 18, 2021. Data analysis is currently underway, with results expected for publication in mid-2022. CONCLUSIONS In this study, researchers supported individuals with living experience of acquired brain injury, of communicating with or clinically supporting someone post injury, and of digital health implementation, to directly access and leverage the latest implementation research evidence and theory. With this support, stakeholders were able to prioritize implementation research targets, develop targeted implementation solutions, and coauthor and publish new implementation findings. The results will be used to optimize the implementation of 3 real-world, evidence-based interventions and thus improve the outcomes of people with brain injury and their communication partners. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/35080

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Training-the-Trainer on Assistive Technology for Cognition (ATC): Current Practices

Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders ◽

10.1044/nnsld23.2.90 ◽

2013 ◽

Vol 23 (2) ◽

pp. 90-94 ◽

Cited By ~ 2

Author(s):

Laurie Ehlhardt Powell ◽

Tracey Wallace ◽

Michelle ranae Wild

Keyword(s):

Brain Injury ◽

Assistive Technology ◽

Acquired Brain Injury ◽

Online Training ◽

Evidence Based ◽

Train The Trainer ◽

Rehabilitation Professionals ◽

Remote Locations ◽

Training Package ◽

And Training

Research shows that if clinicians are to deliver effective, evidence-based assistive technology for cognition (ATC) services to clients with acquired brain injury (ABI), they first need opportunities to gain knowledge and experience with ATC assessment and training practices (O'Neil-Pirozzi, Kendrick, Goldstein, & Glenn, 2004). This article describes three examples of train the trainer materials and programs to address this need: (a) a toolkit for trainers to learn more about assessing and training ATC; (b) a comprehensive, trans-disciplinary program for training staff to provide ATC services in a metropolitan area; and (c) an overview of an on-site/online training package for rehabilitation professionals working with individuals with ABI in remote locations.

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