ArticleBMJ open2024
Understanding experiences, unmet needs and priorities related to post-stroke aphasia care: stage one of an experience-based co-design project.
Article in BMJ open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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Who cites it
12 citing papers in PubMed.
- Feasibility and Acceptability of the Living My Life Program for Rural and Remote Stroke Survivors.The Australian journal of rural health · 2026Trial
- "Then you are left on your own": barriers to guideline-based speech and language therapy for aphasia along the patient journey in the German-speaking healthcare context.BMC health services research · 2026Article
- A global multilingual cocreation of aphasia priority topics through patient and public involvement.Research involvement and engagement · 2026Article
- Lost in Translation: Barriers in Psychiatric Care for Patients With Communication Impairments.Cureus · 2026Article
- Technology-based teaching to support health students' clinical skills in stroke recovery: a scoping review.BMC medical education · 2026Article
- The involvement of individuals with speech and language impairments in research: insights from a co-creation process.Research involvement and engagement · 2025Article
- Co-Designing Aphasia Services: Evaluation of Involvement and Processes to Support Inclusion of People With Post Stroke Aphasia.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Healthcare Access, Satisfaction, and Affordability: Experiences and Barriers of People with Aphasia.Aphasiology · 2025Article
- Priorities for post-stroke aphasia service development: Prioritisation phase of an experience-based co-design study.Clinical rehabilitation · 2025Article
- Qualitative Exploration of Speech Pathologists' Experiences and Priorities for Aphasia Service Design: Initial Stage of an Experience-Based Co-Design Project to Improve Aphasia Services.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- More than a communication disorder: inequities in the financial toxicity of post-stroke aphasia.Frontiers in stroke · 2024Article
- Cypriot Healthcare Professionals' Knowledge and Skills When Interacting With Patients With Aphasia in Clinical Settings.International journal of language & communication disordersArticle
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Authors and funding
11 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivePeople with post-stroke aphasia (language/communication impairment) and their supporters report mixed satisfaction with stroke and aphasia care. To date, however, their journey of care and the key service interactions that shape their experience have not been comprehensively explored. We aimed to investigate the lived experience of post-stroke aphasia care, across the continuum of care and by geographical location, to establish priorities for service design.
designThis is the first stage of an experience-based co-design study. We purposively sampled people with aphasia (PWA) and significant others (SOs) across 21 hospital and health service sites, community groups and by self-referral. Participants shared experiences of care in online interviews and focus groups. Touchpoints (key moments that shape experience) and unmet needs were identified using qualitative thematic analysis. Priorities for service design were established using an adapted nominal group technique.
settingSites spanned remote, regional and metropolitan areas in Queensland, Australia.
participantsPWA (n=32; mild=56%; moderate=31%; severe=13%) and SOs (n=30) shared 124 experiences of acute, rehabilitation and community-based care in 23 focus groups and 13 interviews.
resultsBoth positive and negative healthcare experiences occurred most frequently in hospital settings. Negative experiences regularly related to communication with health professionals, while positive experiences related to the interpersonal qualities of healthcare providers (eg, providing hope) for PWA, or witnessing good rapport between a PWA and their health professional for SOs. To improve services, PWA prioritised communicatively accessible education and information and SOs prioritised access to psychological and peer support.
conclusionsWe identified key aspects of post-stroke aphasia care that shape experience. The needs of PWA and SOs may be better met through health professional training in supported communication, increased service availability in regional and remote areas, communication-accessible hospital environments, increased access to psychological and peer support, and meaningful involvement of SOs in rehabilitation.
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