Active Brain & Nervous System

Aphasia Partnership Training: A programme of work to co-design and evaluate the effectiveness of training a person with aphasia and their communication partner to communicate better together

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Around 40% of stroke survivors lose the ability to speak or understand language, a condition called aphasia, and their family members and carers struggle to communicate with them without professional help. This project tests a new training programme, co-designed with patients and therapists, that teaches both the person with aphasia and their communication partner—whether a spouse, friend, or paid carer—how to communicate better together. Without such training, communication breakdowns are frequent, leading to frustration, depression, anxiety, and damaged relationships. Existing evidence shows that communication partner training works, but it is poorly defined, not routinely delivered by NHS speech and language therapy services, and often excludes ethnic minorities and non-English speakers. This programme fills that gap by developing a standardised, theoretically grounded training package and testing it in a randomised controlled trial across roughly 28 NHS services, involving 336 pairs of people with aphasia and their partners. If successful, the training could become a routine NHS offering, reducing psychological distress and improving quality of life for stroke survivors and those closest to them. The project also produces an implementation guide and a therapist learning package, making it feasible for speech and language therapists to deliver consistently.

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Research Question Is novel co-designed communication partner training for people with aphasia and their communication partners acceptable, clinically and cost effective for improving communication outcomes, and is it feasible to implement in UK NHS speech and language therapy community services? Background Aphasia affects 40% of stroke survivors resulting in considerable communication difficulties for them and their communication partners (family members, friends, paid carers). Without professional intervention to learn how to communicate effectively, aphasia results in frequent communication breakdowns, extreme frustration, distress, depression, anxiety, and disrupts relationships and quality of life. Evidence syntheses confirm communication partner training (CPT) is effective for people with aphasia and their partners, however there are evidence gaps, it is inadequately defined, and is not routinely delivered in NHS speech and language therapy services. Service users and providers need an evidence-based, theoretically underpinned, stakeholder-agreed CPT that addresses their needs, with definitive evidence of effectiveness. Importantly, it must also address known under-representation of specific groups (ethnic minorities, non-English speakers). Aims To investigate the implementation and clinical and cost effectiveness of a novel CPT for improving communication between people with aphasia and their partners, reducing psychological distress and improving relationships. Methods WP1 investigates the UK implementation context of CPT delivery with a survey of current practice; iteratively tests feasibility, acceptability and fidelity of a novel CPT using process evaluation methods alongside case studies, pilot, and definitive phases of an adaptive trial; and designs implementation guidelines. WP2 develops the novel CPT and NHS speech and language therapist learning package through Experience-Based Co-Design with key stakeholders. The CPT and learning package will be refined following initial case studies. Further minor refinements may be made based on findings of the pilot phase of the trial. WP3 delivers a randomised controlled trial using an adaptive design to evaluate clinical and cost effectiveness of our novel CPT in ~28 UK NHS services randomising 336 dyads to CPT plus usual care versus usual care alone. The first 50 dyads will contribute to an internal pilot informing progression with the definitive trial. Cross cutting themes: Patient and public involvement (PPI); Equality, diversity, and inclusion; Innovative and inclusive methods. Timelines for delivery 66 month duration: WP1 Implementation context runs throughout the programme alongside WP2 and WP3. WP2 runs across years 1 and 2. WP3 adaptive trial runs from month 21 with ethical approval, month 39 pilot data analysis, month 40 trial progression decisions and checkpoint report, month 41 definitive trial recruitment recommencement, month 64 final data analysis, and month 66 programme reporting. Anticipated Impact and dissemination We anticipate this programme will positively impact the lives of people with aphasia and their partners, and NHS speech therapists , and build research capacity in under-represented disciplines. We will disseminate through academic and lay outputs, national stroke survivor forums, project website/social media, and the Royal College of Speech and Language Therapists. PPI will ensure meaningful, accessible outputs, tailored for key stakeholders.

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Related Research

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Communication Partner Training for people with aphasia and their family members: identification of intervention components, expected outcomes and associated outcome measures
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