Article Text
PDF
Abstract
Objective People 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.
Design This 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.
Setting Sites spanned remote, regional and metropolitan areas in Queensland, Australia.
Participants PWA (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.
Results Both 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.
Conclusions We 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.
- QUALITATIVE RESEARCH
- STROKE MEDICINE
- Patient-Centered Care
- Health Services
Data availability statement
Data are available upon reasonable request. Raw data are not publicly available to protect participant privacy.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
Statistics from Altmetric.com
Data availability statement
Data are available upon reasonable request. Raw data are not publicly available to protect participant privacy.
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
X @AnemaatLisa, @VictoriaJPalmer, @Aphasia_UQ, @SarahJWallace
Contributors LA, lead author and guarantor of the study, was responsible for the initial draft of this manuscript, research design, all data collection, analysis and interpretation. SJW, DAC and VJP provided regular supervision throughout, and contributed to research design, data analysis, interpretation, critical review and editing revisions of the manuscript. BB contributed to data collection, analysis and critical review and editing of manuscript revisions. Members of the consumer advisory committee, authors KM (person with aphasia), KD (person with aphasia), JD (family member of a person with aphasia), BA (person with aphasia), GB (cultural capability officer for the Royal Brisbane and Women’s Hospital, and a proud Kamilaroi man from North West New South Wales, Australia) and PM (family member of a person with aphasia) provided input on methods, research design, recruitment processes, analysis and dissemination. All authors have read and approved the final version.
Funding This work was supported by the University of Queensland Aphasia Rehabilitation Research Fund (2018–2023) and a New Researcher grant awarded by Speech Pathology Australia (2020). SJJW was supported by a National Health and Medical Research Council (NHMRC) Emerging Leadership Investigator Grant (APP1175821) and LA by the University of Queensland-Research Training Program Scholarship (QARC).
Disclaimer The lead author affirms the manuscript is an honest, accurate and transparent account of the study being reported; no important aspects have been omitted; and that any discrepancies from the study as originally planned have been explained.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.