scholarly journals 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

10.2196/35080 ◽  
2022 ◽  
Vol 11 (1) ◽  
pp. e35080
Author(s):  
Melissa Miao ◽  
Emma Power ◽  
Rachael Rietdijk ◽  
Deborah Debono ◽  
Melissa Brunner ◽  
...  

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

2021 ◽  
Author(s):  
Melissa Miao ◽  
Emma Power ◽  
Rachael Rietdijk ◽  
Deborah Debono ◽  
Melissa Brunner ◽  
...  

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


2005 ◽  
Vol 6 (3) ◽  
pp. 161-168
Author(s):  
Lynne Turner-Stokes

AbstractThis article represents a summary of the George Burniston Oration of the Australian Faculty of Rehabilitation Medicine, which was given as a keynote address at the 6th World Congress on Brain Injury, Melbourne, May 2005. The paper concerns evaluation of the evidence for effectiveness of rehabilitation following acquired brain injury (ABI). It explores the current evidence available, and discusses a number of different review strategies which may be used to overcome the challenges of assimilating research evidence in this context.


2013 ◽  
Vol 14 (1) ◽  
pp. 130-138 ◽  
Author(s):  
Leanne Togher

This paper describes the value of collaboration from two perspectives. The first perspective highlights the benefit of teaching communication partners collaborative communication strategies to facilitate the interactions of people with traumatic brain injury (TBI). Collaborative strategies encompass the provision of collaborative intent, emotional and cognitive support, positive questioning styles and collaborative turn taking. Translating research outcomes into accessible resources is described with reference to the TBI Express website which has video demonstrations of conversation strategies for communication partners of people with TBI. The broader meaning of collaboration is also discussed, with particular focus on the advantages collaboration can provide in advancing rehabilitation outcomes for people with acquired brain injury, their families and social networks. Collaboration is described in terms of encompassing all relevant contributors to the development of research advances, including people with acquired brain injury, their families and social networks, stakeholders, clinicians, peak bodies, students and researchers. Two examples of large-scale research collaborations occurring within Australia are described, including the NHMRC Clinical Centre of Research Excellence in Aphasia Rehabilitation and the NHMRC Moving Ahead Centre for Research Excellence in Brain Recovery, also known as Moving Ahead.


2000 ◽  
Vol 1 (2) ◽  
pp. 151-164 ◽  
Author(s):  
Allison Rowlands

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.


Author(s):  
Sandra Jellema ◽  
Sabine van Erp ◽  
Maria W. G. Nijhuis-van der Sanden ◽  
Rob van der Sande ◽  
Esther M. J. Steultjens

2021 ◽  
Vol 12 ◽  
Author(s):  
Alejandro García-Rudolph ◽  
Alberto García-Molina ◽  
Eloy Opisso ◽  
Josep María Tormos ◽  
Vince I. Madai ◽  
...  

We aimed to (1) apply cluster analysis techniques to mixed-type data (numerical and categorical) from baseline neuropsychological standard and widely used assessments of patients with acquired brain injury (ABI) (2) apply state-of-the-art cluster validity indexes (CVI) to assess their internal validity (3) study their external validity considering relevant aspects of ABI rehabilitation such as functional independence measure (FIM) in activities of daily life assessment (4) characterize the identified profiles by using demographic and clinically relevant variables and (5) extend the external validation of the obtained clusters to all cognitive rehabilitation tasks executed by the participants in a web-based cognitive rehabilitation platform (GNPT). We analyzed 1,107 patients with ABI, 58.1% traumatic brain injury (TBI), 21.8% stroke and 20.1% other ABIs (e.g., brain tumors, anoxia, infections) that have undergone inpatient GNPT cognitive rehabilitation from September 2008 to January 2021. We applied the k-prototypes algorithm from the clustMixType R package. We optimized seven CVIs and applied bootstrap resampling to assess clusters stability (fpc R package). Clusters' post hoc comparisons were performed using the Wilcoxon ranked test, paired t-test or Chi-square test when appropriate. We identified a three-clusters optimal solution, with strong stability (>0.85) and structure (e.g., Silhouette > 0.60, Gamma > 0.83), characterized by distinctive level of performance in all neuropsychological tests, demographics, FIM, response to GNPT tasks and tests normative data (e.g., the 3 min cut-off in Trail Making Test-B). Cluster 1 was characterized by severe cognitive impairment (N = 254, 22.9%) the mean age was 47 years, 68.5% patients with TBI and 22% with stroke. Cluster 2 was characterized by mild cognitive impairment (N = 376, 33.9%) mean age 54 years, 53.5% patients with stroke and 27% other ABI. Cluster 3, moderate cognitive impairment (N = 477, 43.2%) mean age 33 years, 83% patients with TBI and 14% other ABI. Post hoc analysis on cognitive FIM supported a significant higher performance of Cluster 2 vs. Cluster 3 (p < 0.001), Cluster 2 vs. Cluster 1 (p < 0.001) and Cluster 3 vs. Cluster 1 (p < 0.001). All patients executed 286,798 GNPT tasks, with performance significantly higher in Cluster 2 and 3 vs. Cluster 1 (p < 0.001).


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