Adjustment processes in chronic aphasia after stroke: Exploring multiple perspectives in the context of a community-based intervention

Background: The impact of chronic aphasia following stroke on quality of life (QOL) is widely acknowledged, with improved QOL recognised as an important outcome in aphasia recovery and supported by emerging quantitative measures. One of the key constructs recognised as contributing to QOL in other chronic conditions is psychosocial adjustment, the mechanisms of which are little understood for the person with aphasia. Aims: This study addressed adjustment processes in aphasia by exploring multiple perspectives from people engaged in the Communication Hub for Aphasia in North Tyneside (CHANT), a two-year community intervention for long-term aphasia. The study aimed to explore the adjustment process over time in people with aphasia using thematic analysis of personal narratives derived from a combination of sources: semi-structured interviews with reflections on experiences, quantitative measures of change in QOL and self-assessments of change. Methods & Procedures: Three people with mild or moderate chronic aphasia and three people without aphasia involved in CHANT were recruited (a carer, a volunteer, and a local government employee) to participate in semi-structured interviews at two- to three-month intervals over a 12-month period. A total of 28 semi-structured interviews were transcribed and analysed thematically by a small team using NVivo8 software. Narrative data were interpreted within the broader context of QOL measures and self-assessments of living with aphasia (Mumby & Whitworth, 2012).Outcomes & Results: Changes over time that reflected evidence of psychosocial adjustment from the multiple perspectives of the participants covered five core themes: Intervention type, Effectiveness, Barriers, Facilitators, and QOL. A model is proposed to encapsulate the barriers and facilitators that impacted on the process of adjustment and contributed to QOL for individuals involved in the intervention. This model is consistent with the domains from other classifications based on the International Classification of Functioning, Disability and Health (ICF; World Health Organization, 2001), viewing adjustment as a progression towards “wholeness”. The processes involved in personal (and specifically, emotional) adjustment to aphasia are explored, including three stages in rationalisation—Looking back, Looking around, and Looking forward—and the process of transforming negative emotional reactions into positive outcomes. Conclusions: The processes of adjustment in chronic aphasia are complex and vary both over time and according to individual perspectives and circumstances. This preliminary longitudinal study identified commonalities in participants engaged in long-term intervention over 12 months, enabling models of adjustment to be proposed for further exploration and evaluation

Genetically diagnosed Birt-Hogg-Dubé syndrome and familial cerebral cavernous malformations in the same individual: a case report.

When faced with an unusual clinical feature in a patient with a Mendelian disorder, the clinician may entertain the possibilities of either the feature representing a novel manifestation of that disorder or the co-existence of a different inherited condition. Here we describe an individual with a submandibular oncocytoma, pulmonary bullae and renal cysts as well as multiple cerebral cavernous malformations and haemangiomas. Genetic investigations revealed constitutional mutations in FLCN, associated with Birt-Hogg-Dubé syndrome (BHD) and CCM2, associated with familial cerebral cavernous malformation. Intracranial vascular pathologies (but not cerebral cavernous malformation) have recently been described in a number of individuals with BHD (Kapoor et al. in Fam Cancer 14:595-597, 10.1007/s10689-015-9807-y , 2015) but it is not yet clear whether they represent a genuine part of that conditions' phenotypic spectrum. We suggest that in such instances of potentially novel clinical features, more extensive genetic testing to consider co-existing conditions should be considered where available. The increased use of next generation sequencing applications in diagnostic settings is likely to lead more cases such as this being revealed.James Whitworth is supported by a Clinical Research Training Fellowship provided by the Cambridge Cancer Centre.This is the final version of the article. It first appeared from Springer via http://dx.doi.org/10.1007/s10689-016-9928-

“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'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

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

Aphasia therapy: Measuring the relevance

Within aphasia therapy, there is constant discussion regarding how we measure the relevance of therapy for the individual with aphasia. Aphasia therapists grapple with the difficult issue of how to demonstrate that the effects of therapy seen, for example, in improved performance on specific linguistic measures, have relevance to the person’s everyday life. In contrast, there are occasions where positive life changes are seen for the individual, sometimes without corresponding change on linguistic measures (Morris, Howard et al. 2004). When changes in everyday communication and activity are seen or reported, we are usually restricted to offering anecdotal evidence of these

Teacher enactment of the Geospatial Inquiry cycle in classrooms following scaled up professional learning and development

The current study examined the effects of a nationally scaled up Professional Learning and Development (PLD) model on teachers’ classroom implementation of the Geospatial Inquiry instructional framework. Geospatial Inquiry is defined as: asking and answering a research question through the analysis and communication of data that is linked to a geographic location on, above, or near Earth. These data are often represented visually via maps and explored with geospatial technologies. It also examined the relationships between Geospatial Inquiry Teacher Workshop (GITW) implementation and teacher implementation of the Geospatial Inquiry Cycle. Situated cognition provided a theoretical framework for the design, development, and implementation of the GITWs and lessons. Surveys, technology assessments, lessons, and artifacts were analysed using a-priori coding, descriptive statistics, and a generalised linear modelling approach that included hierarchical analysis. Results indicated teachers implemented Geospatial Inquiry lessons with integrity to the principles of Geospatial Inquiry and utilised research-based pedagogical practices. Format of GITWs (e.g. face-to-face or blended) resulted in differences during teachers’ lesson implementation. In addition, whether GITWs were delivered by an individual facilitator or a team of facilitators impacted teachers’ lessons. The findings have several implications for the design and scaling of PLD

Evolutionary history expands the range of signaling interactions in hybrid multikinase networks

Two-component systems (TCSs) are ubiquitous signaling pathways, typically comprising a sensory histidine kinase (HK) and a response regulator, which communicate via intermolecular kinase-to-receiver domain phosphotransfer. Hybrid HKs constitute non-canonical TCS signaling pathways, with transmitter and receiver domains within a single protein communicating via intramolecular phosphotransfer. Here, we report how evolutionary relationships between hybrid HKs can be used as predictors of potential intermolecular and intramolecular interactions (‘phylogenetic promiscuity’). We used domain-swap genes chimeras to investigate the specificity of phosphotransfer within hybrid HKs of the GacS–GacA multikinase network of Pseudomonas brassicacearum. The receiver domain of GacS was replaced with those from nine donor hybrid HKs. Three chimeras with receivers from other hybrid HKs demonstrated correct functioning through complementation of a gacS mutant, which was dependent on strains having a functional gacA. Formation of functional chimeras was predictable on the basis of evolutionary heritage, and raises the possibility that HKs sharing a common ancestor with GacS might remain components of the contemporary GacS network. The results also demonstrate that understanding the evolutionary heritage of signaling domains in sophisticated networks allows their rational rewiring by simple domain transplantation, with implications for the creation of designer networks and inference of functional interactions