“They are dealing with people’s lives…”: Diagnostic and post-diagnostic healthcare experiences in primary progressive aphasia

Purpose: The healthcare experience is a multifaceted and varied process, particularly for people living with complex conditions such as primary progressive aphasia (PPA). Different experiences influence pathways through the health system, impacting client outcomes. To our knowledge, no previous studies have directly explored the healthcare experiences of people with PPA and their families. This study aimed to explore the experiences of people living with PPA from the perspective of both the person with PPA and their families during diagnostic and post-diagnostic phases, and to identify factors influencing service access and perceptions of quality of care. Method: The study followed an Interpretive Phenomenological Analysis (IPA) approach. In-depth, semi-structured interviews were completed with three people with PPA and their primary care partner, and two further care partners of people with PPA. Result: Five superordinate themes were identified: characterising the assessment experience, getting a diagnosis, moving beyond the diagnosis, participant interactions with clinicians, and overall service provision. The five superordinate themes comprised 14 subthemes. Conclusion: The study provides preliminary insights into the complexity of the PPA healthcare journey, and the need for increased accessibility of information and supports following diagnosis. The findings inform recommendations for improving quality of care and the development of a PPA service framework or care pathway

Please don\u27t assess him to destruction : The R.A.I.S.E. assessment framework for primary progressive aphasia

Purpose: Speech-language pathologists (SLPs) assess people with primary progressive aphasia (PPA) through measurements of speech, language, communication, and well-being, with the aims of identifying challenges and strengths, monitoring change, and informing treatment directions and supports. The purpose of this clinical focus article is to highlight the necessity for person-centered assessment specific to PPA and to conceptualize a framework that acknowledges the multifaceted nature of assessment for this population. In this framework, the unique challenges posed by a diagnosis of PPA are addressed with the aim to provide practical guidance for clinicians and to support reflection on current practices. Method: In clinical and research practice, assessment of people with PPA requires an ever-evolving approach that is centered on the client. In this clinical focus article, a discussion-based consensus process was used to synthesize authentic longitudinal experiences of people with PPA to explore assessment approaches, tools, and philosophies. Results: This analysis of person-centered assessment identifies seven essential components of assessment in PPA that set the foundation for the five steps of the R.A.I.S.E. Assessment framework. These components each contribute to a clear definition of assessment that reveals clients\u27 competencies with a strengths-based focus; prioritizes the reciprocity of benefits; promotes dynamic assessment; and recognizes the complexity, evolution of assessment over time, and advocacy. Conclusions: This clinical focus article takes a novel look at assessment in PPA by stepping away from assessment practices that focus on revealing deficits and decline and, instead, provides practical recommendations through the conceptualization of a PPA-specific assessment framework. The R.A.I.S.E. Assessment framework is grounded in principles of uplifting clients through person-centered assessment, keeps pace with best practice in PPA intervention, and contributes to a supportive experience for clients and families in the face of a progressive diagnosis over time

"Please Don't Assess Him to Destruction": The R.A.I.S.E. Assessment Framework for Primary Progressive Aphasia

PURPOSE: Speech-language pathologists (SLPs) assess people with primary progressive aphasia (PPA) through measurements of speech, language, communication, and well-being, with the aims of identifying challenges and strengths, monitoring change, and informing treatment directions and supports. The purpose of this clinical focus article is to highlight the necessity for person-centered assessment specific to PPA and to conceptualize a framework that acknowledges the multifaceted nature of assessment for this population. In this framework, the unique challenges posed by a diagnosis of PPA are addressed with the aim to provide practical guidance for clinicians and to support reflection on current practices. METHOD: In clinical and research practice, assessment of people with PPA requires an ever-evolving approach that is centered on the client. In this clinical focus article, a discussion-based consensus process was used to synthesize authentic longitudinal experiences of people with PPA to explore assessment approaches, tools, and philosophies. RESULTS: This analysis of person-centered assessment identifies seven essential components of assessment in PPA that set the foundation for the five steps of the R.A.I.S.E. Assessment framework. These components each contribute to a clear definition of assessment that reveals clients' competencies with a strengths-based focus; prioritizes the reciprocity of benefits; promotes dynamic assessment; and recognizes the complexity, evolution of assessment over time, and advocacy. CONCLUSIONS: This clinical focus article takes a novel look at assessment in PPA by stepping away from assessment practices that focus on revealing deficits and decline and, instead, provides practical recommendations through the conceptualization of a PPA-specific assessment framework. The R.A.I.S.E. Assessment framework is grounded in principles of uplifting clients through person-centered assessment, keeps pace with best practice in PPA intervention, and contributes to a supportive experience for clients and families in the face of a progressive diagnosis over time

Muddles and puzzles: Metaphor use associated with disease progression in Primary Progressive Aphasia

Background: Primary Progressive Aphasia describes a language-led dementia and its variants. There is little research exploring the experiences of living with this disease. Metaphor, words that represent something else, have been studied extensively in health-related narratives to gain a more intimate insight into health experiences. // Aims: This study explored the metaphors used spontaneously by people with PPA, their care partners (family), and speech and language therapists/pathologists (SLT/Ps) providing support along the continuum of care. // Methods & Procedures: This study examined two previously collected data sets comprising naturalistic talk where metaphors were not the specific focus, the first from focus groups conducted with people with PPA and their families and the second from focus groups conducted with SLT/Ps working with people with PPA. Transcribed data were analysed for metaphor use through an iterative narrative approach. // Outcomes & Results: In all, 237 examples of metaphorical language were identified in the data, with 14 metaphors from people with PPA, 116 from the families and 106 from SLT/Ps. Different metaphors were used by participants to describe their experiences depending on which variant of PPA they were living with, and people also described their disease differently over time. SLT/Ps also used metaphors, however, their language reflected the structured, professional perspective of delivering speech and language therapy services. // Conclusions & Implications: SLT/Ps should listen for and recognise the metaphorical language used by people with PPA and their families to ensure therapeutic alignment, see beyond the PPA to recognise the individual’s needs, and provide person-centred and empathic support

A comparison of aphasia therapy outcomes before and after a Very Early Rehabilitation programme following stroke

Background Very early aphasia rehabilitation studies have shown mixed results. Differences in therapy intensity and therapy type contribute significantly to the equivocal results. Aims To compare a standardized, prescribed very early aphasia therapy regimen with a historical usual care control group at therapy completion (4-5 weeks post-stroke) and again at follow-up (6 months). Methods & Procedures This study compared two cohorts from successive studies conducted in four Australian acute/sub-acute hospitals. The studies had near identical recruitment, blinded assessment and data-collection protocols. The Very Early Rehabilitation (VER) cohort (N = 20) had mild-severe aphasia and received up to 20 1-h sessions of impairment-based aphasia therapy, up to 5 weeks. The control cohort (n = 27) also had mild-severe aphasia and received usual care (UC) therapy for up to 4 weeks post-stroke. The primary outcome measure was the Aphasia Quotient (AQ) and a measure of communicative efficiency (DA) at therapy completion. Outcomes were measured at baseline, therapy completion and 6 months post-stroke and were compared using Generalised Estimating Equations (GEE) models. Outcomes & Results After controlling for initial aphasia and stroke disability, the GEE models demonstrated that at the primary end-point participants receiving VER achieved 18% greater recovery on the AQ and 1.5% higher DA scores than those in the control cohort. At 6 months, the VER participants maintained a 16% advantage in recovery on the AQ and 0.6% more on DA scores over the control cohort participants. Conclusions & Implications A prescribed, impairment-based aphasia therapy regimen, provided daily in very early post-stroke recovery, resulted in significantly greater communication gains in people with mild-severe aphasia at completion of therapy and at 6 months, when compared with a historical control cohort. Further research is required to demonstrate large-scale and long-term efficacy

A comparison of aphasia therapy outcomes before and after a Very Early Rehabilitation programme following stroke

Background Very early aphasia rehabilitation studies have shown mixed results. Differences in therapy intensity and therapy type contribute significantly to the equivocal results. Aims To compare a standardized, prescribed very early aphasia therapy regimen with a historical usual care control group at therapy completion (4-5 weeks post-stroke) and again at follow-up (6 months). Methods & Procedures This study compared two cohorts from successive studies conducted in four Australian acute/sub-acute hospitals. The studies had near identical recruitment, blinded assessment and data-collection protocols. The Very Early Rehabilitation (VER) cohort (N = 20) had mild-severe aphasia and received up to 20 1-h sessions of impairment-based aphasia therapy, up to 5 weeks. The control cohort (n = 27) also had mild-severe aphasia and received usual care (UC) therapy for up to 4 weeks post-stroke. The primary outcome measure was the Aphasia Quotient (AQ) and a measure of communicative efficiency (DA) at therapy completion. Outcomes were measured at baseline, therapy completion and 6 months post-stroke and were compared using Generalised Estimating Equations (GEE) models. Outcomes & Results After controlling for initial aphasia and stroke disability, the GEE models demonstrated that at the primary end-point participants receiving VER achieved 18% greater recovery on the AQ and 1.5% higher DA scores than those in the control cohort. At 6 months, the VER participants maintained a 16% advantage in recovery on the AQ and 0.6% more on DA scores over the control cohort participants. Conclusions & Implications A prescribed, impairment-based aphasia therapy regimen, provided daily in very early post-stroke recovery, resulted in significantly greater communication gains in people with mild-severe aphasia at completion of therapy and at 6 months, when compared with a historical control cohort. Further research is required to demonstrate large-scale and long-term efficacy

Hadronization in Z0 decay

The confinement transition from the quark and gluon degrees of freedom appropriate in perturbation theory to the hadrons observed by real world experiments is poorly understood. In this strongly interacting transition regime we presently rely on models, which to varying degrees reflect possible scenarios for the QCD dynamics. Because of the absence of beam and target remnants, and the clean experimental conditions and high event rates, e+e- annihilation to hadrons at the Z0 provides a unique laboratory, both experimentally and theoretically, for the study of parton hadronization. This review discusses current theoretical understanding of the hadronization of partons, with particular emphasis on models of the non-perturbative phase, as implemented in Monte Carlo simulation programs. Experimental results at LEP and SLC are summarised and considered in the light of the models. Suggestions are given for further measurements which could help to produce more progress in understanding hadronization.Comment: Topical review, to appear in J.Phys.G, 80 page

Evidence-based care for older people : Where are we now and where to in the future?

Within contemporary health and social care for older people, it is widely accepted that best outcomes are achieved when health professionals collaborate to provide integrated, evidence-based and person-centred care. Though past studies have reported broad data about the nature of speech pathology services provided to older people, this study seeks increased understanding of factors that influence clinician choice of assessment and therapy approaches and clinician ability to provide evidence-based, interprofessional care. An online survey was used to gather data from 145 Australian speech-language pathologists working with people over the age of 65; in hospital, community, and residential aged care settings. Data reported were drawn from free text responses and analysed using thematic analysis. Results highlight the influence of clinician access to, and the dynamics of, an interprofessional team and support network as well as the availability of ongoing education on their ability to provide evidence-based, quality care. Participants emphasized the complexity of care provided to older people as necessitating team-based, coordinated care, and careful consideration of each clients’ unique abilities and limitations. Though participants acknowledged the importance of reliability and validity in the selection of assessment and therapy approaches, they commented that assessment and therapy choice was most often determined by contextual factors. To facilitate best practice, there is a need for further research, teaching, and professional development that explicitly supports speech pathology involvement in interprofessional care teams, alongside consideration of an expanded model of evidence-based decision-making that further accounts for the influence of clinical context and team dynamics

Is the speech-language pathology profession prepared for an ageing population? An Australian survey

Purpose: This study profiled the demographic characteristics and practice patterns of speech-language pathologists working with older Australians to inform future workforce planning and service development in response to an ageing population and aged care sector reform. Method: Data were collected through snowball distribution of an online survey comprising six sections: demographic details; caseload and service delivery practices, degree of inter-professional practice; engagement with professional development and support; and assessment and management of swallowing, mealtime and communication difficulties. All data were analysed using descriptive statistics and chi-square to determine the independence of key variables. Result: Data from 145 speech-language pathologists highlight the need for increased numbers of clinicians working outside of metropolitan areas and greater workforce diversity, along with increased incentive, supervision and inter-professional support for new graduate and early career clinicians considering working outside of hospital settings. To ensure evidence-based practice, further research into the validity of current assessment and intervention methods used across aged care settings is needed. Conclusion: The findings highlight the need for an extended scope of practice and improved models of support for speech-language pathologists working with older people to better respond to the needs of an ageing population and on-going aged care sector reform

Inhibitory control and traumatic brain injury: The association between executive control processes and social communication deficits

© 2016 Taylor & Francis Group, LLC.Primary objective: To further examine the proposed relationship between executive impairments in inhibitory control and social communication difficulties reflecting poor inhibition following TBI. Method: Inhibitory control was assessed in 14 adults with TBI on the Hayling Sentence Completion Test (HSCT). Errors on Part B (failed inhibition) and Part B-Part A response latencies (delayed inhibition) were examined. A relative, friend or frequent communication partner of each participant with TBI completed the La Trobe Communication Questionnaire (LCQ) on the communication difficulties of the person with TBI. The Inhibitory Control Factor (ICF) score of the LCQ based on seven items relating to poor inhibition was specifically analysed against performance on the HSCT. Results: Multiple regression analysis indicated that 58% (51% adjusted) of the variance in LCQ ICF scores was accounted for by measures on the HSCT. Only B–A response latencies on the HSCT explained a significant proportion of the variability in LCQ ICF scores. Conclusions: Reduced inhibition speed may more strongly contribute to disinhibited communication behaviours than failures in inhibition. These findings contribute to understanding of the cognitive processes underlying social communication and have the potential to support and inform the use and development of management practices for individuals following TBI