UK speech and language therapists’ assessment of children\u27s expressive language, and functional impairment and impact, following the CATALISE publications

Background: In 2016/17, the CATALISE Consortium published the results of a multinational and multidisciplinary Delphi consensus study, representing agreement among professionals about the definition and process of identification of children with Developmental Language Disorder (DLD) (Bishop et al.,2016, 2017). The extent to which the current clinical practice of UK speech and language therapists (SLTs) reflects the CATALISE consensus statements is unknown. Aims: To investigate how UK SLTs’ expressive language assessment practicesreflect the CATALISE documents’ emphasis on the functional impairment andimpact caused by DLD, by examining: whether multiple sources of assess-ment information are gathered; how standardised and non-standardised sources are combined in clinical decision-making, and how clinical observation andlanguage sample analysis are utilised. Methods and Procedures: An anonymous, online survey was carried out between August 2019 and January 2020. It was open to UK-based paediatric SLTs who assess children up to age 12 with unexplained difficulties using language. Questions probed different aspects of expressive language assessment which are referred to in the CATALISE consensus statements and supplementary comments, and asked about participants’ familiarity with the CATALISE statements. Responses were analysed using simple descriptive statistics and content analysis. Outcomes and Results: The questionnaire was completed by 104 participants, from all four regions of the United Kingdom, working in a range of clinical settings with different levels of professional experience of DLD. The findings indicate that clinical assessment practices broadly align with the CATALISE statements. Although clinicians carry out standardised assessments more frequently than other types of assessment, they also gather information from other sources and use this alongside standardised test scores to inform clinical decisions. Clinical observation and language sample analysis are commonly utilised to evaluate functional impairment and impact, along with parent/carer/teacher and child report. However, asking about the child’s own perspective could be more widely utilised. The findings also highlight a lack of familiarity with the details of the CATALISE documents among two thirds of the participants. Conclusions and Implications: Assessment practices broadly align with the CATALISE statements, but there is a need for greater clarity regarding terminology and the assessment of functional language impairment and impact. This research should prompt discussion in the profession about how to further develop and adopt expressive language assessment practices which reflect the CATALISE consensus and support effective assessment

Practical and clinical approaches using pacing to improve selfregulation in special populations such as children and people with mental health or learning disabilities

For special populations such as people with a mental health issue or learning disability, a disconnect between the ability to accurately monitor and regulate exercise behaviour can lead to reduced levels of physical activity, which, in turn, is associated with additional physical or mental health problems. Activity pacing is a strategy used in clinical settings to address issues of pain amelioration, while self-pacing research is now well addressed in sport and exercise science literature. It has been proposed recently that these overlapping areas of investigation collectively support the development of self-regulatory, lifestyle exercise skills across broad population groups. Activity pacing appears to have substantial application in numerous development and rehabilitation settings and, therefore, the purpose of this short communication is to articulate how an activity pacing approach could be utilized among population groups in whom self-regulatory skills may require development. This paper provides specific examples of exercise practice across 2 discrete populations: children, and people with mental health and learning difficulties. In these cases, homeostatic regulatory processes may either be altered, or the individual may require extrinsic support to appropriately self-regulate exercise performance. A support-based exercise environment or approach such as programmatic activity (lifestyle) pacing would be beneficial to facilitate supervised and education-based self-regulation until such time as fully self-regulated exercise is feasible. [Abstract copyright: Journal Compilation © 2021 Foundation of Rehabilitation Information.

UK speech and language therapists’ assessment of children's expressive language, and functional impairment and impact, following the CATALISE publications

Background: In 2016/17, the CATALISE Consortium published the results of a multinational and multidisciplinary Delphi consensus study, representing agreement among professionals about the definition and process of identification of children with Developmental Language Disorder (DLD) (Bishop et al.,2016, 2017). The extent to which the current clinical practice of UK speech and language therapists (SLTs) reflects the CATALISE consensus statements is unknown. Aims: To investigate how UK SLTs’ expressive language assessment practicesreflect the CATALISE documents’ emphasis on the functional impairment andimpact caused by DLD, by examining: whether multiple sources of assess-ment information are gathered; how standardised and non-standardised sources are combined in clinical decision-making, and how clinical observation andlanguage sample analysis are utilised. Methods and Procedures: An anonymous, online survey was carried out between August 2019 and January 2020. It was open to UK-based paediatric SLTs who assess children up to age 12 with unexplained difficulties using language. Questions probed different aspects of expressive language assessment which are referred to in the CATALISE consensus statements and supplementary comments, and asked about participants’ familiarity with the CATALISE statements. Responses were analysed using simple descriptive statistics and content analysis. Outcomes and Results: The questionnaire was completed by 104 participants, from all four regions of the United Kingdom, working in a range of clinical settings with different levels of professional experience of DLD. The findings indicate that clinical assessment practices broadly align with the CATALISE statements. Although clinicians carry out standardised assessments more frequently than other types of assessment, they also gather information from other sources and use this alongside standardised test scores to inform clinical decisions. Clinical observation and language sample analysis are commonly utilised to evaluate functional impairment and impact, along with parent/carer/teacher and child report. However, asking about the child’s own perspective could be more widely utilised. The findings also highlight a lack of familiarity with the details of the CATALISE documents among two thirds of the participants. Conclusions and Implications: Assessment practices broadly align with the CATALISE statements, but there is a need for greater clarity regarding terminology and the assessment of functional language impairment and impact. This research should prompt discussion in the profession about how to further develop and adopt expressive language assessment practices which reflect the CATALISE consensus and support effective assessment

Practitioners' ability to remotely develop understanding for personalised care and support planning: a thematic analysis of multiple data sources from the feasibility phase of the Dementia Personalised Care Team (D-PACT) intervention

Practitioner understanding of patients' preferences, wishes and needs is essential for personalised health care i.e., focusing on 'what matters' to people based on their individual life situation. To develop such an understanding, dementia practitioners need to use communication practices that help people share their experiences, preferences, and priorities. Following the COVID-19 pandemic, dementia support is likely to continue to be delivered both remotely and in-person. This study analysed multiple sources of qualitative data to examine the views of practitioners, people living with dementia and carers, and researchers on how an understanding of what matters to people living with dementia can be developed remotely via telephone and video call. Access to environmental stimuli, the remote use of visual tools, peoples' tendency to downplay or omit details about their troubles and carers' ability to disclose privately were interpreted, through thematic analysis, to be factors affecting how practitioners sought to develop understanding remotely. Cumulatively, findings show that while remote support created unique challenges to practitioners' ability to develop understanding for personalised care, practitioners developed adaptive strategies to overcome some of these challenges. Further research should examine how, when and for whom these adapted practices for remote personalised care work, informing the development of evidence-based guidance and training on how practitioners can remotely develop the understanding required for personalised care

Practitioners’ ability to remotely develop understanding for personalised care and support planning: a thematic analysis of multiple data sources from the feasibility phase of the Dementia Personalised Care Team (D-PACT) intervention

Practitioner understanding of patients’ preferences, wishes and needs is essential for personalised health care i.e., focusing on ‘what matters’ to people based on their individual life situation. To develop such an understanding, dementia practitioners need to use communication practices that help people share their experiences, preferences, and priorities. Following the COVID-19 pandemic, dementia support is likely to continue to be delivered both remotely and in-person. This study analysed multiple sources of qualitative data to examine the views of practitioners, people living with dementia and carers, and researchers on how an understanding of what matters to people living with dementia can be developed remotely via telephone and video call. Access to environmental stimuli, the remote use of visual tools, peoples’ tendency to downplay or omit details about their troubles and carers’ ability to disclose privately were interpreted, through thematic analysis, to be factors affecting how practitioners sought to develop understanding remotely. Cumulatively, findings show that while remote support created unique challenges to practitioners’ ability to develop understanding for personalised care, practitioners developed adaptive strategies to overcome some of these challenges. Further research should examine how, when and for whom these adapted practices for remote personalised care work, informing the development of evidence-based guidance and training on how practitioners can remotely develop the understanding required for personalised care

Engaging stakeholders in realist programme theory building: insights from the prospective phase of a primary care dementia support study

‘Dementia - Personalised Care Team’ (D-PACT) is a five-year NIHR funded programme, using realist methods to develop and evaluate a complex, person-centred intervention for people with dementia and their carers. During the early project stages, we engaged with multiple stakeholders, including people with dementia and their carers, to develop an initial programme theory (IPT) – into an elaborated programme theory (EPT), by helping to uncover intervention mechanisms leading to outcomes in specific contexts. Realist research methods for developing programme theories are under-reported. In addition, there is a paucity of practical guidance on how to engage underserved and vulnerable populations in complex interventions programme theory development. We attend to these gaps, providing a worked example of how we meaningfully engaged people living with dementia and carers, alongside field experts, as stakeholders in this process. Our IPT theory building included multi-stakeholder primary research exercises and meetings with PPI contributors and an Expert Reference Group. We adapted interview schedules, and used visual resources and scenario-based activities, to support stakeholders to think in a ‘realist’ way. Using realist and thematic analyses led to hypothesis-building of causal mechanisms. Sharing findings with stakeholders led to further refinement of the intervention design, ready for testing in a subsequent feasibility study. We found that, despite the cognitive challenges associated with dementia, innovative methods of engagement can enable this stakeholder group to understand the realist approach and provide a platform through which to share their experiences. Taking a highly flexible and unhurried approach, led to novel insights into the complexities of person-centred dementia support. We argue for more detailed methodological guidance, based on realist principles, on how to collaborate with underrepresented populations to rigorously gain insights as to what is likely to make a difference and refine initial programme theory

Longitudinal realist evaluation of the dementia PersonAlised care team (D-PACT) intervention: protocol

BACKGROUND: Different dementia support roles exist but evidence is lacking on which aspects are best, for whom and in what circumstance, and on their associated costs and benefits. Phase 1 of the Dementia PersonAlised Care Team programme (D-PACT), developed a post-diagnostic primary care-based intervention for people with dementia and their carers and assessed the feasibility of a trial. AIM: Phase 2 of the programme aims to 1) refine our programme theory on how, when and for whom the intervention works and 2) evaluate its value and impact. DESIGN & SETTING: A realist longitudinal mixed-methods evaluation will be conducted in urban, rural, and coastal areas across Southwest and Northwest England where low-income groups or ethnic minorities (eg, South Asian) are represented. Design was informed by patient, public and professional stakeholder input and Phase one findings. METHOD: High volume qualitative and quantitative data will be collected longitudinally from people with dementia, carers and practitioners. Analyses will comprise: 1) realist longitudinal case studies; 2) conversation analysis of recorded interactions; 3) statistical analyses of outcome and experience questionnaires; 4 a) health economic analysis examining costs of delivery; 4b) realist economic analysis of high-cost events and 'near misses'. All findings will be synthesised using a joint display table, evidence appraisal tool, triangulation and stakeholder co-analysis. CONCLUSION: Our realist evaluation will describe how, why and for whom the intervention leads (or not) to change over time; it also demonstrates how a non-randomised design can be more appropriate for complex interventions with similar questions or populations

Longitudinal realist evaluation of the dementia PersonAlised care team (D-PACT) intervention: protocol

Background Different dementia support roles exist but evidence is lacking on which aspects are best, for whom and in what circumstance, and on their associated costs and benefits. Phase 1 of the Dementia PersonAlised Care Team programme (D-PACT), developed a post-diagnostic primary care-based intervention for people with dementia and their carers and assessed the feasibility of a trial. AimPhase 2 of the programme aims to 1) refine our programme theory on how, when and for whom the intervention works and 2) evaluate its value and impact. Design & setting A realist longitudinal mixed-methods evaluation will be conducted in urban, rural, and coastal areas across Southwest and Northwest England where low-income groups or ethnic minorities (eg, South Asian) are represented. Design was informed by patient, public and professional stakeholder input and Phase one findings. Method High volume qualitative and quantitative data will be collected longitudinally from people with dementia, carers and practitioners. Analyses will comprise: 1) realist longitudinal case studies; 2) conversation analysis of recorded interactions; 3) statistical analyses of outcome and experience questionnaires; 4 a) health economic analysis examining costs of delivery; 4b) realist economic analysis of high-cost events and ‘near misses’. All findings will be synthesised using a joint display table, evidence appraisal tool, triangulation and stakeholder co-analysis. Conclusion Our realist evaluation will describe how, why and for whom the intervention leads (or not) to change over time; it also demonstrates how a non-randomised design can be more appropriate for complex interventions with similar questions or populations

Longitudinal realist evaluation of the dementia PersonAlised care team (D-PACT) intervention: protocol

Background Different dementia support roles exist but evidence is lacking on which aspects are best, for whom and in what circumstance, and on their associated costs and benefits. Phase 1 of the Dementia PersonAlised Care Team programme (D-PACT), developed a post-diagnostic primary care-based intervention for people with dementia and their carers and assessed the feasibility of a trial. AimPhase 2 of the programme aims to 1) refine our programme theory on how, when and for whom the intervention works and 2) evaluate its value and impact. Design & setting A realist longitudinal mixed-methods evaluation will be conducted in urban, rural, and coastal areas across Southwest and Northwest England where low-income groups or ethnic minorities (eg, South Asian) are represented. Design was informed by patient, public and professional stakeholder input and Phase one findings. Method High volume qualitative and quantitative data will be collected longitudinally from people with dementia, carers and practitioners. Analyses will comprise: 1) realist longitudinal case studies; 2) conversation analysis of recorded interactions; 3) statistical analyses of outcome and experience questionnaires; 4 a) health economic analysis examining costs of delivery; 4b) realist economic analysis of high-cost events and ‘near misses’. All findings will be synthesised using a joint display table, evidence appraisal tool, triangulation and stakeholder co-analysis. Conclusion Our realist evaluation will describe how, why and for whom the intervention leads (or not) to change over time; it also demonstrates how a non-randomised design can be more appropriate for complex interventions with similar questions or populations