Dysphagia affects individuals across all ages and has pervasive and potentially life-threatening ... more Dysphagia affects individuals across all ages and has pervasive and potentially life-threatening consequences. Individuals with dysphagia are assessed and treated by speech and language therapists (SLTs), however, little attention has been paid to their practices in Pakistan. This study aimed to explore SLTs practices for dysphagia assessment, signs and symptoms observed during evaluation, and management strategies, alongside barriers and facilitators to service delivery in Pakistan. A 45-item survey was distributed to SLTs online. Responses were received from 101 participants and analyzed descriptively, and open-text responses were analyzed using content analysis. Results revealed that 65.3% SLTs worked across the lifespan, and most (79.4%) had dysphagia-related experience of five years or less. SLTs were an active workforce engaged with varying ages, disorders, and settings, yet dysphagia contributed to a small caseload percentage for most. Analyses found informal clinical exams w...
International Journal of Language & Communication Disorders
BackgroundRehabilitation for cognitive‐communication impairments following brain injury can be co... more BackgroundRehabilitation for cognitive‐communication impairments following brain injury can be complex given the heterogenous nature of impairments post injury. Project‐based intervention has the potential to improve communication skills and create a meaningful real‐life context where individuals collaborate to develop a concrete product, which benefits others. While evidence for this intervention is emerging, the COVID‐19 pandemic prompted increased use of telehealth interventions to serve people with brain injury. This paper aims to describe a framework for the delivery of project‐based intervention via telehealth within community rehabilitation settings; and present several case studies of telehealth groups completed in the United Kingdom and the United States during the COVID‐19 pandemic.MethodsA working group was formed to map the components of project‐based intervention onto the rehabilitation treatment specification system (RTSS). This system is a conceptual framework that he...
International Journal of Language & Communication Disorders
BackgroundImpaired discourse production is commonly reported for individuals with traumatic brain... more BackgroundImpaired discourse production is commonly reported for individuals with traumatic brain injury (TBI). Discourse deficits can negatively impact community integration, return to employment and quality of life. COVID‐19 restrictions have reduced in‐person assessment services for people with communication impairments. Advances in telehealth may help speech and language therapists (SLTs) to assess monologic discourse more systematically and improve access to services for patients who may find it difficult to attend in‐person.AimsTo examine the feasibility of telehealth administration of narrative and procedural discourse tasks with individuals with TBI and matched controls.Methods & ProceduresA total of 20 individuals with TBI and 20 healthy controls, aged 18–55 years, were directly recruited from the UK and indirectly recruited from the US. For participants with TBI, time post‐injury was at least 3 months with no diagnosis of aphasia. Control participants were matched for sex ...
Peer relationship difficulties in adolescents with acquired brain injury (ABI) are under-recogniz... more Peer relationship difficulties in adolescents with acquired brain injury (ABI) are under-recognized and targets for intervention are unclear. From a social constructionist position, this study aimed to engage with stakeholders to develop a collaborative understanding of peer relationship difficulties in adolescents with ABI and seek consultation on what might be required to improve them. Focus groups and semi-structured interviews were conducted with four stakeholder groups: adolescents with ABI (n = 4); parents of adolescents with ABI (n = 7); adults who sustained an ABI in adolescence (n = 2); and specialist practitioners (n = 3). Qualitative data were analysed using thematic analysis. The analysis yielded 11 themes, grouped into two domains. The first, understanding peer relationship difficulties, included themes from "exclusion and a need to belong", to "loss of past self". The second, supporting peer relationships, comprised themes of "building understanding" and "meaningful social connection", amongst others. A logic model of stakeholder experiences of peer relationship difficulties was constructed. Difficulties with peers can increase vulnerability to feelings of loneliness, shame, and hopelessness for adolescents post-ABI. Stakeholders described that a meaningful intervention would be multi-layered, targeting change within the adolescent's environment and within the adolescent themselves. The presented logic model provides a framework for future intervention development.
Communication impairments are common following acquired brain injury (ABI) and have a significant... more Communication impairments are common following acquired brain injury (ABI) and have a significant impact on a person’s quality of life (QOL) post-injury. While some treatments have improved communication skills, few have measured QOL, and even fewer have shown improved QOL for people with ABI following communication-based treatments. Project-based treatment is an alternative treatment approach that could have an impact on communication skills and QOL for people with ABI who are long-term post-injury. The treatment is embedded in a context of meaningful activities chosen by people with brain injury, whereby, as a group, they work collaboratively to plan and achieve a concrete goal or outcome that contributes others and/or the wider community. Project-based treatment has not been empirically evaluated for people with ABI. More specifically, no research has evaluated whether projects can improve both communication skills and QOL in people with ABI. Therefore, this research aims to eval...
Communication impairments are common following traumatic brain injury (TBI) and affect the abilit... more Communication impairments are common following traumatic brain injury (TBI) and affect the ability of a person with TBI to have successful conversations. Ylvisaker, Sellers and Edelman (1998) argue that training to improve the communication skills of an everyday support person would impact on the functioning of a person with TBI. Paid caregivers are often involved to support people with TBI, however, little attention has been focused directly on improving their interaction skills. Therefore, this thesis describes a study conducted to investigate the effect of a communication training program on improving the conversational interactions between paid caregivers and people with TBI. Participants were 10 paid caregivers randomly selected and allocated to either a control or training group. Treatment comprised a 17 hour program (across 6 weeks) that combined collaboration and elaboration conversational strategies (Ylvisaker et al., 1998) with discourse activities (Togher, McDonald, Code, & Grant, 2004). Two conversational interactions (i.e. structured and casual conversations) were videotaped pretraining, posttraining and at 6 months followup. The conversations were rated by two independent judges. In addition, focused interviews were conducted pre and posttraining to explore the experiences of trained paid caregivers. Training for paid caregivers improved their structured conversational interactions with people with TBI. Independent raters perceived these interactions to be more appropriate, more rewarding and more interesting compared to a control group. Trained paid caregivers made greater improvements in their ability Communication Training for Paid Caregivers of People with TBI v to acknowledge and reveal the competence of a person with TBI. Improvements were maintained for six months. No significant changes were found for the casual conversational interactions. Findings from the focused interviews revealed that trained paid caregivers reported improvements in their knowledge of effective communicative strategies. This perceived improvement led to interactions reported as more enjoyable and successful and less frustrating. Trained paid caregivers also perceived increased confidence and ability to self-regulate their use of strategies when communicating with people with TBI. Aspects of the training program that were felt to promote or hinder learning were also identified. The findings from this study highlight the importance of training and educating paid caregivers to improve their communication skills. Training can have a significant impact on interactions that involve both paid caregivers and a person with TBI.
Purpose: This systematic review explored how virtual reality (VR) has been used to rehabilitate a... more Purpose: This systematic review explored how virtual reality (VR) has been used to rehabilitate aphasia. Materials and methods: Empirical studies were included where VR was used to target language, wellbeing, or quality of life in adults with acquired language impairment. Degenerative communication disabilities were excluded. Seven health databases were searched in October 2021. Risk of Bias was assessed using published checklists and completeness of intervention reporting evaluated. Narrative synthesis described forms of VR, rationales given, outcome measures, communication functions targeted, characteristics of interventions, and outcomes achieved within the framework of impairment, activity, and participation. Results: Fourteen studies, involving 229 participants, met the criteria. The studies employed four forms of VR with various rationales given. Interventions used published and novel protocols. Primary outcomes targeted language impairment (12/14), activity (1/14), and well-being (1/14) and achieved positive outcomes in impairment and activity. All studies were exploratory. Risk of bias was high. Findings are discussed in the context of gains achieved by VR in other health contexts and the multiuser gaming literature. Conclusions: Uses of VR in aphasia rehabilitation described in the literature are limited. Most applications target the remediation of language impairments. Opportunities to address activity, participation, and wider aspects of well-being are rare. � IMPLICATIONS FOR REHABILITATION � Research documenting the use of virtual reality (VR) to rehabilitate aphasia is limited and exploratory, so does not yet offer clear guidance for clinicians. � Many of the identified studies have used known published protocols (e.g., naming therapy or scripts therapy) delivered through the novel VR format and focus on language impairment outcomes. � VR offers clinicians a unique opportunity to address communication activity and participation through the use of multiuser virtual worlds, but this has only been explored by only two research teams.
, K. (2021). "Loneliness can also kill": a qualitative exploration of outcomes and experiences of... more , K. (2021). "Loneliness can also kill": a qualitative exploration of outcomes and experiences of the SUPERB peer-befriending scheme for people with aphasia and their significant others. Disability and Rehabilitation.
To determine the feasibility and acceptability of peer-befriending, for people with aphasia. Desi... more To determine the feasibility and acceptability of peer-befriending, for people with aphasia. Design: Single-blind, parallel-group feasibility randomised controlled trial comparing usual care to usual care + peer-befriending. Participants and setting: People with aphasia post-stroke and low levels of distress, recruited from 5 NHS Hospitals and linked community services; their significant others; and 10 befrienders recruited from community. Intervention: Six 1-hour peer-befriending visits over three months. Main measures: Feasibility parameters included proportion eligible of those screened; proportion consented; missing data; consent and attrition rates. Acceptability was explored through qualitative interviews. Outcomes for participants and significant others were measured at baseline, 4-and 10-months; for peer-befrienders before training and after one/two cycles of befriending. Results: Of 738 patients identified, 75 were eligible of 89 fully screened (84%), 62 consented (83% of eligible) and 56 randomised. Attrition was 16%. Adherence was high (93% attended ⩾2 sessions, 81% all six). The difference at 10 months on the GHQ-12 was 1.23 points on average lower/better in the intervention arm (95% CI 0.17, −2.63). There was an 88% decrease in the odds of GHQ-12 caseness (95% CI 0.01, 1.01). Fourty-eight significant others and 10 peer-befrienders took part. Procedures and outcome measures were acceptable. Serious adverse events were few (n = 10, none for significant others and peer-befrienders) and unrelated.
City Research Online (City University London), 2016
A feasibility study investigating the use of project-based treatment to improve communication ski... more A feasibility study investigating the use of project-based treatment to improve communication skills and quality-of-life (QoL) in people with ABI. Brain Injury, 30(5-6), 500.
Purpose: Peer-befriending, where support is offered by someone with shared lived experience, is a... more Purpose: Peer-befriending, where support is offered by someone with shared lived experience, is an intervention that may facilitate successful adjustment in people experiencing post-stroke aphasia. This paper explores the experiences of the peer-befrienders. Materials and methods: People with aphasia were recruited as peer-befrienders within the SUPERB trial investigating befriending for people with post-stroke aphasia. The intervention comprised six visits over three months. Peer-befrienders were matched with at least one befriendee and received training and ongoing supervision. They were invited to participate in in-depth interviews which were analysed using framework analysis. Results: All 10 befrienders participated in interviews, reporting on 19 matches. Seven main themes emerged: content of the sessions; befriender-befriendee relationship; negotiating the visits; handling boundaries and endings; positive impact of the befriending for befrienders and befriendees; and beliefs about the nature and value of peer support. While befrienders described challenges, such as negotiating journeys and witnessing distress, the role was perceived as a "secure challenge" due to the support and training received. Conclusions: Befrienders perceived the role as enjoyable and rewarding, and felt they were making a positive difference. They were unanimous in believing that people with aphasia can offer unique and valuable support to others with aphasia. Trial registration: ClinicalTrials.gov identifier NCT02947776, registered 28th October 2016. ä IMPLICATIONS FOR REHABILITATION People with lived experience of stroke and aphasia were able to offer emotional and social peer support to others with aphasia within the SUPERB trial. Although there were challenges, peer befrienders perceived the role as rewarding and satisfying. Peer befrienders valued the training and ongoing supervision and support they received to deliver the intervention. It is recommended that rehabilitation professionals considering offering peer-befriending schemes provide training and ongoing supervision to support peer-befrienders fulfil their role, as well as practical support with, e.g., arranging visits.
Supplemental material, sj-pdf-1-cre-10.1177_0269215521995671 for Supporting wellbeing through pee... more Supplemental material, sj-pdf-1-cre-10.1177_0269215521995671 for Supporting wellbeing through peer-befriending (SUPERB) for people with aphasia: A feasibility randomised controlled trial by Katerina Hilari, Nicholas Behn, Kirsty James, Sarah Northcott, Jane Marshall, Shirley Thomas, Alan Simpson, Becky Moss, Chris Flood, Sally McVicker and Kimberley Goldsmith in Clinical Rehabilitation
Dysphagia affects individuals across all ages and has pervasive and potentially life-threatening ... more Dysphagia affects individuals across all ages and has pervasive and potentially life-threatening consequences. Individuals with dysphagia are assessed and treated by speech and language therapists (SLTs), however, little attention has been paid to their practices in Pakistan. This study aimed to explore SLTs practices for dysphagia assessment, signs and symptoms observed during evaluation, and management strategies, alongside barriers and facilitators to service delivery in Pakistan. A 45-item survey was distributed to SLTs online. Responses were received from 101 participants and analyzed descriptively, and open-text responses were analyzed using content analysis. Results revealed that 65.3% SLTs worked across the lifespan, and most (79.4%) had dysphagia-related experience of five years or less. SLTs were an active workforce engaged with varying ages, disorders, and settings, yet dysphagia contributed to a small caseload percentage for most. Analyses found informal clinical exams w...
International Journal of Language & Communication Disorders
BackgroundRehabilitation for cognitive‐communication impairments following brain injury can be co... more BackgroundRehabilitation for cognitive‐communication impairments following brain injury can be complex given the heterogenous nature of impairments post injury. Project‐based intervention has the potential to improve communication skills and create a meaningful real‐life context where individuals collaborate to develop a concrete product, which benefits others. While evidence for this intervention is emerging, the COVID‐19 pandemic prompted increased use of telehealth interventions to serve people with brain injury. This paper aims to describe a framework for the delivery of project‐based intervention via telehealth within community rehabilitation settings; and present several case studies of telehealth groups completed in the United Kingdom and the United States during the COVID‐19 pandemic.MethodsA working group was formed to map the components of project‐based intervention onto the rehabilitation treatment specification system (RTSS). This system is a conceptual framework that he...
International Journal of Language & Communication Disorders
BackgroundImpaired discourse production is commonly reported for individuals with traumatic brain... more BackgroundImpaired discourse production is commonly reported for individuals with traumatic brain injury (TBI). Discourse deficits can negatively impact community integration, return to employment and quality of life. COVID‐19 restrictions have reduced in‐person assessment services for people with communication impairments. Advances in telehealth may help speech and language therapists (SLTs) to assess monologic discourse more systematically and improve access to services for patients who may find it difficult to attend in‐person.AimsTo examine the feasibility of telehealth administration of narrative and procedural discourse tasks with individuals with TBI and matched controls.Methods & ProceduresA total of 20 individuals with TBI and 20 healthy controls, aged 18–55 years, were directly recruited from the UK and indirectly recruited from the US. For participants with TBI, time post‐injury was at least 3 months with no diagnosis of aphasia. Control participants were matched for sex ...
Peer relationship difficulties in adolescents with acquired brain injury (ABI) are under-recogniz... more Peer relationship difficulties in adolescents with acquired brain injury (ABI) are under-recognized and targets for intervention are unclear. From a social constructionist position, this study aimed to engage with stakeholders to develop a collaborative understanding of peer relationship difficulties in adolescents with ABI and seek consultation on what might be required to improve them. Focus groups and semi-structured interviews were conducted with four stakeholder groups: adolescents with ABI (n = 4); parents of adolescents with ABI (n = 7); adults who sustained an ABI in adolescence (n = 2); and specialist practitioners (n = 3). Qualitative data were analysed using thematic analysis. The analysis yielded 11 themes, grouped into two domains. The first, understanding peer relationship difficulties, included themes from "exclusion and a need to belong", to "loss of past self". The second, supporting peer relationships, comprised themes of "building understanding" and "meaningful social connection", amongst others. A logic model of stakeholder experiences of peer relationship difficulties was constructed. Difficulties with peers can increase vulnerability to feelings of loneliness, shame, and hopelessness for adolescents post-ABI. Stakeholders described that a meaningful intervention would be multi-layered, targeting change within the adolescent's environment and within the adolescent themselves. The presented logic model provides a framework for future intervention development.
Communication impairments are common following acquired brain injury (ABI) and have a significant... more Communication impairments are common following acquired brain injury (ABI) and have a significant impact on a person’s quality of life (QOL) post-injury. While some treatments have improved communication skills, few have measured QOL, and even fewer have shown improved QOL for people with ABI following communication-based treatments. Project-based treatment is an alternative treatment approach that could have an impact on communication skills and QOL for people with ABI who are long-term post-injury. The treatment is embedded in a context of meaningful activities chosen by people with brain injury, whereby, as a group, they work collaboratively to plan and achieve a concrete goal or outcome that contributes others and/or the wider community. Project-based treatment has not been empirically evaluated for people with ABI. More specifically, no research has evaluated whether projects can improve both communication skills and QOL in people with ABI. Therefore, this research aims to eval...
Communication impairments are common following traumatic brain injury (TBI) and affect the abilit... more Communication impairments are common following traumatic brain injury (TBI) and affect the ability of a person with TBI to have successful conversations. Ylvisaker, Sellers and Edelman (1998) argue that training to improve the communication skills of an everyday support person would impact on the functioning of a person with TBI. Paid caregivers are often involved to support people with TBI, however, little attention has been focused directly on improving their interaction skills. Therefore, this thesis describes a study conducted to investigate the effect of a communication training program on improving the conversational interactions between paid caregivers and people with TBI. Participants were 10 paid caregivers randomly selected and allocated to either a control or training group. Treatment comprised a 17 hour program (across 6 weeks) that combined collaboration and elaboration conversational strategies (Ylvisaker et al., 1998) with discourse activities (Togher, McDonald, Code, & Grant, 2004). Two conversational interactions (i.e. structured and casual conversations) were videotaped pretraining, posttraining and at 6 months followup. The conversations were rated by two independent judges. In addition, focused interviews were conducted pre and posttraining to explore the experiences of trained paid caregivers. Training for paid caregivers improved their structured conversational interactions with people with TBI. Independent raters perceived these interactions to be more appropriate, more rewarding and more interesting compared to a control group. Trained paid caregivers made greater improvements in their ability Communication Training for Paid Caregivers of People with TBI v to acknowledge and reveal the competence of a person with TBI. Improvements were maintained for six months. No significant changes were found for the casual conversational interactions. Findings from the focused interviews revealed that trained paid caregivers reported improvements in their knowledge of effective communicative strategies. This perceived improvement led to interactions reported as more enjoyable and successful and less frustrating. Trained paid caregivers also perceived increased confidence and ability to self-regulate their use of strategies when communicating with people with TBI. Aspects of the training program that were felt to promote or hinder learning were also identified. The findings from this study highlight the importance of training and educating paid caregivers to improve their communication skills. Training can have a significant impact on interactions that involve both paid caregivers and a person with TBI.
Purpose: This systematic review explored how virtual reality (VR) has been used to rehabilitate a... more Purpose: This systematic review explored how virtual reality (VR) has been used to rehabilitate aphasia. Materials and methods: Empirical studies were included where VR was used to target language, wellbeing, or quality of life in adults with acquired language impairment. Degenerative communication disabilities were excluded. Seven health databases were searched in October 2021. Risk of Bias was assessed using published checklists and completeness of intervention reporting evaluated. Narrative synthesis described forms of VR, rationales given, outcome measures, communication functions targeted, characteristics of interventions, and outcomes achieved within the framework of impairment, activity, and participation. Results: Fourteen studies, involving 229 participants, met the criteria. The studies employed four forms of VR with various rationales given. Interventions used published and novel protocols. Primary outcomes targeted language impairment (12/14), activity (1/14), and well-being (1/14) and achieved positive outcomes in impairment and activity. All studies were exploratory. Risk of bias was high. Findings are discussed in the context of gains achieved by VR in other health contexts and the multiuser gaming literature. Conclusions: Uses of VR in aphasia rehabilitation described in the literature are limited. Most applications target the remediation of language impairments. Opportunities to address activity, participation, and wider aspects of well-being are rare. � IMPLICATIONS FOR REHABILITATION � Research documenting the use of virtual reality (VR) to rehabilitate aphasia is limited and exploratory, so does not yet offer clear guidance for clinicians. � Many of the identified studies have used known published protocols (e.g., naming therapy or scripts therapy) delivered through the novel VR format and focus on language impairment outcomes. � VR offers clinicians a unique opportunity to address communication activity and participation through the use of multiuser virtual worlds, but this has only been explored by only two research teams.
, K. (2021). "Loneliness can also kill": a qualitative exploration of outcomes and experiences of... more , K. (2021). "Loneliness can also kill": a qualitative exploration of outcomes and experiences of the SUPERB peer-befriending scheme for people with aphasia and their significant others. Disability and Rehabilitation.
To determine the feasibility and acceptability of peer-befriending, for people with aphasia. Desi... more To determine the feasibility and acceptability of peer-befriending, for people with aphasia. Design: Single-blind, parallel-group feasibility randomised controlled trial comparing usual care to usual care + peer-befriending. Participants and setting: People with aphasia post-stroke and low levels of distress, recruited from 5 NHS Hospitals and linked community services; their significant others; and 10 befrienders recruited from community. Intervention: Six 1-hour peer-befriending visits over three months. Main measures: Feasibility parameters included proportion eligible of those screened; proportion consented; missing data; consent and attrition rates. Acceptability was explored through qualitative interviews. Outcomes for participants and significant others were measured at baseline, 4-and 10-months; for peer-befrienders before training and after one/two cycles of befriending. Results: Of 738 patients identified, 75 were eligible of 89 fully screened (84%), 62 consented (83% of eligible) and 56 randomised. Attrition was 16%. Adherence was high (93% attended ⩾2 sessions, 81% all six). The difference at 10 months on the GHQ-12 was 1.23 points on average lower/better in the intervention arm (95% CI 0.17, −2.63). There was an 88% decrease in the odds of GHQ-12 caseness (95% CI 0.01, 1.01). Fourty-eight significant others and 10 peer-befrienders took part. Procedures and outcome measures were acceptable. Serious adverse events were few (n = 10, none for significant others and peer-befrienders) and unrelated.
City Research Online (City University London), 2016
A feasibility study investigating the use of project-based treatment to improve communication ski... more A feasibility study investigating the use of project-based treatment to improve communication skills and quality-of-life (QoL) in people with ABI. Brain Injury, 30(5-6), 500.
Purpose: Peer-befriending, where support is offered by someone with shared lived experience, is a... more Purpose: Peer-befriending, where support is offered by someone with shared lived experience, is an intervention that may facilitate successful adjustment in people experiencing post-stroke aphasia. This paper explores the experiences of the peer-befrienders. Materials and methods: People with aphasia were recruited as peer-befrienders within the SUPERB trial investigating befriending for people with post-stroke aphasia. The intervention comprised six visits over three months. Peer-befrienders were matched with at least one befriendee and received training and ongoing supervision. They were invited to participate in in-depth interviews which were analysed using framework analysis. Results: All 10 befrienders participated in interviews, reporting on 19 matches. Seven main themes emerged: content of the sessions; befriender-befriendee relationship; negotiating the visits; handling boundaries and endings; positive impact of the befriending for befrienders and befriendees; and beliefs about the nature and value of peer support. While befrienders described challenges, such as negotiating journeys and witnessing distress, the role was perceived as a "secure challenge" due to the support and training received. Conclusions: Befrienders perceived the role as enjoyable and rewarding, and felt they were making a positive difference. They were unanimous in believing that people with aphasia can offer unique and valuable support to others with aphasia. Trial registration: ClinicalTrials.gov identifier NCT02947776, registered 28th October 2016. ä IMPLICATIONS FOR REHABILITATION People with lived experience of stroke and aphasia were able to offer emotional and social peer support to others with aphasia within the SUPERB trial. Although there were challenges, peer befrienders perceived the role as rewarding and satisfying. Peer befrienders valued the training and ongoing supervision and support they received to deliver the intervention. It is recommended that rehabilitation professionals considering offering peer-befriending schemes provide training and ongoing supervision to support peer-befrienders fulfil their role, as well as practical support with, e.g., arranging visits.
Supplemental material, sj-pdf-1-cre-10.1177_0269215521995671 for Supporting wellbeing through pee... more Supplemental material, sj-pdf-1-cre-10.1177_0269215521995671 for Supporting wellbeing through peer-befriending (SUPERB) for people with aphasia: A feasibility randomised controlled trial by Katerina Hilari, Nicholas Behn, Kirsty James, Sarah Northcott, Jane Marshall, Shirley Thomas, Alan Simpson, Becky Moss, Chris Flood, Sally McVicker and Kimberley Goldsmith in Clinical Rehabilitation
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