160 research outputs found

    Reducing the psychosocial impact of aphasia on mood and quality of life in people with aphasia and the impact of caregiving in family members through the Aphasia Action Success Knowledge (Aphasia ASK) program: Study protocol for a randomized controlled trial

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    © 2016 Worrall et al. Background: People with aphasia and their family members are at high risk of experiencing post stroke depression. The impact of early interventions on mood and quality of life for people with aphasia is unknown. Methods/design: This study will determine whether an early intervention for both the person with aphasia after stroke and their family members leads to better mood and quality of life outcomes for people with aphasia, and less caregiver burden and better mental health for their family members. This is a multicenter, cluster-randomized controlled trial. Clusters, which are represented by Health Service Districts, will be randomized to the experimental intervention (Aphasia Action Success Knowledge Program) or an attention control (Secondary Stroke Prevention Information Program). People with aphasia and their family members will be blinded to the study design and treatment allocation (that is, will not know there are two arms to the study). Both arms of the study will receive usual care in addition to either the experimental or the attention control intervention. A total of 344 people with aphasia and their family members will be recruited. Considering a cluster size of 20, the required sample size can be achieved from 18 clusters. However, 20 clusters will be recruited to account for the potential of cluster attrition during the study. Primary outcome measures will be mood and quality of life of people with aphasia at 12 months post stroke. Secondary measures will be family member outcomes assessing the impact of caregiving and mental health, and self-reported stroke risk-related behaviors of people with aphasia. Discussion: This is the first known program tailored for people with aphasia and their family members that aims to prevent depression in people with aphasia by providing intervention early after the stroke. Trial registration: This trial is registered in the Australian New Zealand Clinical Trials Registry (ANZCTR) as ACTRN12614000979651. Date registered: 11 September 2014

    Establishing consensus on a definition of aphasia: an e-Delphi study of international aphasia researchers

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    Background : Definitions reflect the current state of knowledge about a health condition. An agreed definition of aphasia is central to the progression of the science and clinical practice relevant to aphasia. Aim : To establish consensus on a definition of aphasia. Methods & Procedures : A three-round modified e-Delphi study was conducted with aphasia researchers who were members of the Collaboration of Aphasia Trialists (CATs). In round one, participants were provided with a draft definition developed by the Societal Impact and Reintegration Working Group of CATs. Participants were asked whether they agreed with the definition and were asked to comment on any aspects that they perceived to require amendment. Comments were collated and analysed using inductive content analysis. In round two, participants were presented with the collated and de-identified results of the first round and the participants were asked to vote “yes/no” on two contentious aspects of the definition. In round three, agreement on the revised definition was again sought using closed “yes/no” voting. Consensus was defined a priori as at least 70% agreement by 80% of all CATs members. CATs membership fluctuated across the study period and ranged between 131 and 141 members. Outcomes & Results : The proposed definition was Aphasia is a communication disability due to an acquired impairment of language modalities caused by focal brain damage. Aphasia may affect participation and quality of life of the person with aphasia as well as their family and friends. Aphasia masks competence and affects functioning across relationships, life roles and activities, thereby influencing social inclusion, social connectedness, access to information and services, equal rights, and wellbeing in family, community and culture. Two main categories of proposed amendments to the definition were identified: (1) definition of aphasia as a communication disability versus a language impairment; and (2) definition of aphasia as being the result of a focal and/or diffuse lesion. After three rounds of surveys, consensus was unable to be achieved with an almost even split across participants on both amendment issues. Conclusion : Further debate about the use of the term communication disability to describe aphasia and whether aphasia is a result of focal or diffuse lesions is required before consensus is again attempted

    People with aphasia’s perspectives of the therapeutic alliance during speech-language intervention: A Q methodological approach

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    Purpose: To identify which elements of the therapeutic alliance are important to people with aphasia (PWA) attending speech-language pathology post-stroke. Method: A Q methodology design was adopted to explore which elements of the therapeutic alliance were valued by PWA. Statements (n = 453) relevant to the research question were extrapolated from the literature and qualitative interviews. A representative sample of statements (n = 38) was identified from the expansive data set. PWA (n = 23) sorted statements hierarchically according to whether they thought the statement was important or unimportant. Completed Q sorts were analysed using a by-person factor analysis. Result: Analysis yielded a five-factor solution, representing five distinct viewpoints: (1) acknowledge me, help me to understand; (2) respect me, listen to me; (3) challenge me, direct me; (4) understand me, laugh with me; and (5) hear me, encourage me. Conclusion: The findings highlight the need for clinicians to adopt a flexible and idiosyncratic approach to therapeutic alliance construction in order to meet the relational needs of a heterogeneous population. This is the first study to use Q methodology with PWA, demonstrating that Q methodology is an effective and viable method for investigating subjectivity in this population

    ImPACT: a multifaceted implementation for conversation partner training in aphasia in Dutch rehabilitation settings.

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    Purpose: Exploration of the clinical uptake of a novel conversation partner training (CPT) programme in aphasia in ten Dutch rehabilitation facilities and identification of its perceived facilitators and barriers in service providers, and the evaluation of the implementation methods used. Method: Ten rehabilitation centres took part in a multifaceted implementation of conversation partner training over thirteen months. Each centre selected two speech and language therapists to act as knowledge brokers whose role it was to raise awareness of CPT in the team and to facilitate getting partners of people with aphasia into the programme. The implementation was evaluated using analysis of recruitment data and questionnaires, supplemented by consensus data and scrutiny of implementation plans. Results: Successful implementation was described as 1) four dyads included during the intervention period, 2) two more dyads included after the intervention period, before the end of the study and 3) inclusion of Partners of Aphasic Clients Conversation Training (PACT) in a description of the logistics of local stroke care (stroke care pathway). Seven centres were successful in reaching the target inclusion of 6 dyads in total. Only one centre had care pathways in place. From a recruitment pool of 504 dyads, 41 dyads were recruited and 34 partners completed the implementation of PACT study (ImPACT). Observed facilitators included the motivation to engage partners in the rehabilitation process and the perceived added value of PACT. The perceived barriers focused on time limitations within current systems to discuss the consequences of PACT with relevant professionals and to establish allocated time for PACT within existing care routines. Conclusions: The motivation of professionals to involve partners in the rehabilitation process assisted with the introduction of PACT in practice. The main barrier was time, linked to the requirement to think through integration of this innovation within existing care. Longer term evaluation would ascertain how centres sustain uptake without support

    Active citizenship and aquired neurological communication difficulty

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    People with communication impairments may face barriers to civic participation, with resulting marginalisation of individuals who wish to be actively involved. The investigation aimed to explore the experience of civically engaged adults with acquired neurological communication difficulties. Six people with acquired neurological communication difficulties were interviewed. Discussion included the definition of active citizenship, their civic involvement, motivations, related barriers and facilitators. Qualitative analysis was undertaken, with data categorised, coded and examined for recurring themes. All participants were active in disability-related organisations and four undertook wider civic roles. Motivations included activity being outwith the home and wanting to effect change for themselves and the populations they represented. Disability group meetings were more positive experiences than broader community activities, which were associated with fatigue and frustration, commonly resulting from communication difficulties and unmet support needs. All participants identified a need for professional and public educational about disability and communication and made recommendations on content, methods and priority groups. For these participants civic engagement had positive and negative dimensions. Speech and language therapists should promote reduction of the barriers that impede the active citizenship rights of people with communication support needs. Civic participation may be a relevant measure of outcome in communication impaired populations
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