This is the accepted version of the paper.This version of the publication may differ from the final published version. Permanent repository link:http://openaccess.city.ac.uk/15003/ Link to published version: http://dx.doi.org/10. 1080/09638288.2016.1194899 Copyright and reuse: City Research Online aims to make research outputs of City, University of London available to a wider audience. Copyright and Moral Rights remain with the author(s) and/or copyright holders. URLs from City Research Online may be freely distributed and linked to. City Research Online: http://openaccess.city.ac.uk/ publications@city.ac.uk City Research OnlineAbstract Purpose: To identify important treatment outcomes from the perspective of people with aphasia and their families using the ICF as a frame of reference. Methods:The nominal group technique was used with people with aphasia and their family members in seven countries to identify and rank important treatment outcomes from aphasia rehabilitation. People with aphasia identified outcomes for themselves; and family members identified outcomes for themselves and for the person with aphasia. Outcomes were analysed using qualitative content analysis and ICF linking.Results: A total of 39 people with aphasia and 29 family members participated in one of 16 nominal groups. Inductive qualitative content analysis revealed the following six themes: (1) Improved communication; (2) Increased life participation; (3) Changed attitudes through increased awareness and education about aphasia; (4) Recovered normality; (5) Improved physical and emotional well-being; and (6) Improved health (and support) services.Prioritised outcomes for both participant groups linked to all ICF components; primarily Activity/Participation (39%) and Body Functions (36%) for people with aphasia, and Activity/Participation (49%) and Environmental Factors (28%) for family members.Outcomes prioritised by family members relating to the person with aphasia, primarily linked to Body Functions (60%). Conclusions:People with aphasia and their families identified treatment outcomes which span all components of the ICF. This has implications for research outcome measurement and clinical service provision which currently focuses on the measurement of Body Function outcomes. The wide range of desired outcomes generated by both people with aphasia and their family members, highlights the importance of collaborative goal setting within a familycentred approach to rehabilitation. These results will be combined with other stakeholder perspectives to establish a core outcome set for aphasia treatment research. Achieving outcomes that are important to consumers is a key factor in maximising the value of healthcare (Porter & Lee, 2013). This conceptualisation of value reflects a broader shift in health care towards person-centred services which seek to meet individual needs in holistic ways (World Health Organization., 2007). In aphasia rehabilitation, the value of measuring consumer-important outcomes has steadily gained momentum in ...
Background: Communication partner training (CPT) is an umbrella term for a complex behavioural intervention for communications partners (CPs) of people with aphasia (PWA) and possibly PWA themselves, with many interacting components, deployed in flexible ways. Recent systematic reviews (Simmons-Mackie, Raymer, Armstrong, Holland, & Cherney, 2010; Simmons-Mackie, Raymer, & Cherney, 2016) have highlighted the effectiveness of CPT in addressing the skills of conversation partners and the communicative participation of people with aphasia but have suggested that CPT has been variably delivered, with no clear picture of what the essential elements of CPT are and how CPT is expected to achieve its results through hypothesized mechanisms of change (Coster, 2013). Aim: This paper aims broadly to consider specification of CPT and describes how CPT has been conducted overall and in relation to treatment recipients. Recommendations for CPT and areas for future research are considered. Methods & Procedures: A critical review and narrative synthesis was carried out through: i) the systematic application of the 12-item TIDieR checklist (Hoffmann et al., 2014) to the 56 studies appraised in the Simmons-Mackie et al. (2010; 2016) reviews, providing a quantitative overview of the completeness of CPT intervention reporting; and ii) a qualitative synthesis of the reviewed CPT literature according to TIDieR items. Results: Half of the TIDieR checklist items were reported by 71% or more of the studies, and the rest of the items were reported by 0-63% of studies. TIDieR items relating to the treatment (goal, rationale or theory of essential elements, materials and procedures) and provision (provider, mode, timing, dose) were more frequently reported, however the level of detail provided was often inadequate or incomplete. The interventions were insufficiently specified to enable replication for most of the studies considered. The most infrequently reported items were: name, location, intervention tailoring and modification, and planned and Reporting interventions in communication partner training 3 actual intervention adherence/fidelity. Conclusion: For a better understanding of an intervention, it is necessary to identify and describe potentially central elements and perhaps especially in complex interventions as CPT, where it is likely also more difficult. Whilst the reviewed CPT studies are on average reporting on slightly more than half of the TIDieR items, they are overall insufficiently detailed. Some items appear easier to report on, whereas other items have not been attended to, are too complex in nature to give a full report on, or simply have not been relevant for the individual study to include.
Clinical borderlands manifest themselves through encounters between people deemed to be in need of health care and health care providers (Mattingly, 2010). This article addresses the problem of inherent asymmetry in the clinical discourse between clinical providers, such as speech–language pathologists (SLPs), and persons with aphasia. Speech–language pathologists, communicating as experts, tend to dominate the discourse regarding the course of treatment, particularly with clients with aphasia who may lack the necessary communicative skills to participate in decision making. Such patterns of communication were apparent in a study reported here that involved thematic analysis of the views of 12 SLPs regarding involving people with aphasia in shared decision making and in analysis of 33 video recordings of these 12 SLPs and 28 people with aphasia during clinical interactions. Although the SLPs stated that they wanted to involve their clients in decision making and took steps to do so, the discourse sample analysis revealed that the SLPs controlled the interaction through their initiations, topic selection, and presentation of limited choices. Alternatives for supporting greater decision-making participation among people with aphasia with their clinicians are discussed.
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