Jytte Isaksen

Which outcomes are most important to people with aphasia and their families? an international nominal group technique study framed within the ICF

Abstract 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. Prioritized outcomes for both participant groups linked to all ICF components; primary activity/participation (39%) and body functions (36%) for people with aphasia, and activity/participation (49%) and environmental factors (28%) for family members. Outcomes prioritized 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 family-centred approach to rehabilitation. These results will be combined with other stakeholder perspectives to establish a core outcome set for aphasia treatment research. Implications for Rehabilitation Important outcomes for people with aphasia and their families span all components of the ICF. The relevancy and translation of research findings may be increased by measuring and reporting research outcomes which are important to people living with aphasia. The results of this study indicate that important treatment outcomes for people living with aphasia most frequently link to the activity/participation and body function components of the ICF. The outcomes identified in this study suggest a broad role for clinicians working in aphasia rehabilitation. The categories of identified outcomes may be used clinically as a starting point in goal-setting discussions with clients and their families.

‘It really makes good sense’: the role of outcome evaluation in aphasia therapy in Denmark

BACKGROUND Measuring or evaluating outcomes is a common activity for many speech-language therapists (SLTs). A major focus has been on external forces claiming outcome evaluation to optimize quality and the use of resources without integrating the viewpoints of SLTs. AIMS To identify the purpose of outcome evaluation by letting SLTs identify not only the actual demands for outcome evaluation, but also the role of outcome evaluation in aphasia therapy in the clinic. METHODS & PROCEDURES Twelve SLTs participated in semi-structured interviews to identify the demands they met for outcome evaluation as well as the role the outcome evaluation had in their work with people with aphasia. The interviews were transcribed verbatim and analysed by means of qualitative thematic analysis. OUTCOMES & RESULTS Six themes corresponding with the aims of this study were identified. These show that the SLTs initially evaluated outcomes because of external demands and interests. However, they also describe the process as a necessary activity inherent to therapy and state that they would not want to be without it. The outcome evaluation is seen as an interactive process between SLTs, clients and possibly significant others. Not only it is seen as a product in which outcome and/or client satisfaction is documented, but also it is described as a dynamic process that benefits the clients, significant others, the therapy and the SLTs themselves in various ways. This role of outcome evaluation ranges from enhancement of insight and promotion of acceptance for the clients and significant others to planning the next step in therapy or in life with aphasia after therapy. In all of which the clients play a significant role, since their active participation is sought throughout the sessions. CONCLUSION & IMPLICATIONS The results suggest an interesting relationship between treatment policy and treatment practice, where an initial administrative initiative to conduct outcome evaluation is adopted by the SLTs and made into a meaningful part of therapy in which the clients play a significant role.

Reporting interventions in communication partner training: a critical review and narrative synthesis of the literature

ABSTRACT 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 hypothesised 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. Outcomes & 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 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

Well, You Are the One Who Decides: Attempting shared decision making at the end of aphasia therapy

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.

Essential elements of communication partner training – can they be identified using the TIDieR checklist?

Essential elements of communication partner training – can they be identified using the TIDieR checklist?

Evaluating communication partner training in aphasia: considering qualitatively informed randomised controlled trials (RCT) in an international context

Department of Clinical Speech & Language Studies, Trinity College Dublin, Dublin, Ireland; Department of Language and Communication, University of Southern Denmark, Odense, Denmark; Division of Language and Communication Science, School of Health Sciences, City University London, London, United Kingdom; Independent Researcher, Currently Based in Bangalore, India; Division of Neuroscience and Experimental Psychology, Faculty of Biology, Medicine and Health, University of Manchester, United Kingdom

The (S)CAse of Denmark: multisite implementation of supported conversation for adults with aphasia (SCA™)

Background: SCATM is a method to train conversation partners of people with aphasia in supporting conversation (Kagan, 1998). SCATM has been used and studied with different types of communication partners including health care professionals and students (Legg, Young, & Bryer, 2005), and in various settings, acute and rehabilitation wards, and care facilities with positive outcomes regardless to aphasia severity and types of communication partners (Jensen et al., 2015; Simmons-Mackie et al., 2007). SCATM was enhanced as an evidence-based method for training health care professionals to support conversation with people with aphasia in an evaluation of neuro rehabilitation from the Danish Health Authority back in 2011. Since then the method has since been implemented at 12 hospitals in Denmark with more hospitals to come in near future. Aims: This study aims to provide a thorough description of the barriers and facilitators experienced by Danish SLTs involved in SCATM implementation from the point of view of current approaches to implementation research and implementation drivers (Fixsen et al.). Methods & Procedures: Prior to this study all hospitals involved in implementation of SCATM to staff were identified through personal network, social media, direct email contact and mouth-to-mouth. Following a questionnaire with closed and open-ended questions was distributed to the SLT team at each of the 12 identified hospitals. All 12 teams responded. Analyses were made through descriptive statistics and thematic analysis. Outcomes & Results: While using the same approach and material for teaching SCATM, the implementation model and outcome measures are locally decided if considered at all. The implementation of SCATM at Danish hospitals was reported to be a bottom-up led process largely driven by SLTs with variable managerial and staff support. Teaching SCATM to hospital staff has resulted in their increased awareness of aphasia and seemingly improved communication with patients with aphasia. However, staffs’ adherence to implementation goals, and maintenance of the learned strategies, and the impact on the people with aphasias’ point of view remains un-investigated. The SLTs report similar challenges such as lack of managerial support, knowledge of implementation design, materials, and suitable outcome measures.