In it for the long haul: A reflective account of collaborative involvement in aphasia research and education

Background: The involvement of service users and supporters/advocates in healthcare education and healthcare research has developed an increasingly high profile in recent years, but relatively little is known about collaborations involving people with aphasia and family members. Aims: To reflect on and learn from the experience of collaboration, examining the ways in which the involvement of people with aphasia and family members was carried out over a fifteen-year period in the context of a UK university. Methods and procedures: We have taken a reflective longitudinal case study approach, and used constructs from implementation theory as sensitizing concepts in a cross-sectional analysis of documents in four key activities: the Conversation Partner scheme; Reaching Further Out; Supported Communication to Improve Participation in Rehabilitation; the Aphasia Research Collaboration. We then produced narrative accounts which run through the whole period of the study. Through this process, we as authors also reflected on our own experiences of collaboration. Outcomes and results: Conversation Partners (CP), integrated into the speech and language therapy practice placement, was the basis for almost all subsequent involvement. We deepened and strengthened the scope of the CP collaboration through funded workshops–Reaching Further Out–facilitated by Connect. Increasing the visibility of our collaboration enabled us to attract institutional support to develop our first major research undertaking, where people with aphasia played a key role in highlighting the need for the study, developing and implementing the intervention, taking part in project oversight, and helping disseminate the findings. The Aphasia Research Collaboration began as a partnership between speech and language therapy students and people with aphasia and has continued in various forms. Four narrative threads run through the period of this study: the importance of systems and people being adaptable; the contribution of leadership and commitment to continuity; a commitment to act and learn together; the importance of understanding value. Conclusions: Collaboration between people with aphasia, family members, and academic staff has been a collective accomplishment, where careful attention to learning, negotiation and adjustment have led to sustained involvement. In the future, where collaborations may be increasingly mediated through online technologies, all those involved must ensure that these are supported by robust and inclusive processes

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

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

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

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

Towards an asset-based approach to promoting and sustaining well-being for people with aphasia and their families: an international exploratory study

Background: There is growing interest in interventions that promote positive outcomes and well-being for people with aphasia (PWA) and their families, but provision is inconsistent. An asset-based approach, based on the theory of salutogenesis, focuses on what makes you well rather than ill. This approach has been used successfully across a variety of research fields, including health and social care research and practice, and has the potential to provide coherent strategies to support people living successfully with aphasia. Aim: To explore the relevance and potential of an asset-based approach to promoting and sustaining well-being for PWA and their families, across contexts and cultures. Methods & procedures: Exploratory case studies were carried out in the United Kingdom (UK), Norway, Israel, Ireland, and Denmark in a variety of settings. Following an interpretative paradigm, we used qualitative methods including: interviews; appreciative inquiry; group discussions; and participatory action research. 95 PWA and 25 family members were asked to identify assets within themselves and their communities that promote, sustain and maintain well-being, by responding to: “What makes you feel good/well/healthy?” Data were analysed using thematic analysis. Outcomes & results: An asset-based approach proved to be a powerful means for PWA and family members to explore what helps them live well with aphasia. Key themes were identified: (1) personal journey; (2) helping others; (3) connecting to self; (4) connecting to others; (5) recreation; and (6) personal attributes. Self-identification of assets, within the person and their community, and connections to these, helped PWA and their family members to maintain well-being, overcome barriers and regain confidence. Using this approach, focusing on the person’s recognition, activation and mobilisation of assets, could enhance the person’s understanding and restore meaning around the stroke and onset of aphasia. Conclusion: This novel exploratory research demonstrates the relevance and potential across diverse cultural contexts of taking an asset-based approach to promoting and sustaining well-being for PWA and their families. Focusing on maintaining connections to these assets and developing meaning around the event, could prevent some of the negative sequela of stroke. The “patient–professional” relationship must transform into a collaborative partnership, with time and flexibility needed to introduce this approach. Further research should examine how service providers and PWA could develop and operationalise an asset-based approach in clinical and community settings and identify if there is an optimum timing for introducing this approach along the stroke pathway

An aphasia research agenda - a consensus statement from the collaboration of aphasia trialists.

Coordination of international aphasia research would minimise duplication of effort, support synergistic international activities across languages and multidisciplinary perspectives, and promote high-quality conduct and reporting of aphasia research, thereby increasing the relevance, transparency, and implementation of findings. The Collaboration of Aphasia Trialists (CATs) sought to develop an aphasia research agenda to direct future research activities, based on priorities shared by people with aphasia, family members, and healthcare professionals. Our established international research network spanning 33 countries contributed to this activity. Research literature reporting the priorities of stakeholders was reviewed and synthesised (phase 1). Representatives from Working Groups on Aphasia Assessment & Outcomes, Prognosis & Predictors of Recovery, Effectiveness of Interventions, and Societal Impact & Reintegration participated in a two-day research agenda setting meeting. The CATs expert panel refined research objectives and identified constituent components of research and methodological developments required to address these research components. The objectives and research components were grouped into overarching themes (phase 2). The resultant list was then circulated to more than 180 CATs members for review, revision, and approval. Consensus on the final aphasia research agenda and road-map was reached by CATs executive committee (phase 3). The expert panel identified five overarching research themes: (i) evidence-based interventions for people with aphasia, (ii) effective interventions to support those communicating with people with aphasia, (iii) cross-linguistic assessment and core outcomes for aphasia research, (iv) predictors of language recovery, and (v) clinical implementation of research findings. Within these broad themes, 30 research objectives and 91 individual aphasia research components were identified and sequentially ordered. This agenda builds on research priorities identified by people with aphasia and their families, and includes priorities of healthcare professionals and researchers, and will support the rehabilitation and recovery of people with aphasia. Our internationally relevant research agenda promotes rigour in methodology, considers international applicability, synergistic activities, and sharing of resources and expertise