You are here

Article Text

Article menu
Rehabilitation medicine
Protocol
Using experience-based codesign to coproduce aphasia rehabilitation services: study protocol
  1. Lisa Anemaat1,2,
  2. Victoria J Palmer3,
  3. David A Copland1,2,
  4. Kathryn Mainstone2,
  5. Kent Druery2,
  6. Julia Druery2,
  7. Bruce Aisthorpe2,
  8. Geoffrey Binge2,
  9. Penelope Mainstone2,
  10. Sarah J Wallace1,2
  1. 1School of Health and Rehabilitation Sciences, The University of Queensland, Saint Lucia, Queensland, Australia
  2. 2Queensland Aphasia Research Centre, The University of Queensland, Herston, Queensland, Australia
  3. 3The ALIVE National Centre for Mental Health Research Translation, The University of Melbourne, Melbourne, Victoria, Australia
  1. Correspondence to Lisa Anemaat; l.anemaat{at}uq.edu.au

Abstract

Introduction Aphasia is an impairment of language that occurs in 30%–40% of stroke survivors. This often chronic condition results in poor outcomes for the individual with aphasia and their family. Long-term aphasia management is limited, with few people receiving sufficient services by 6–12 months postonset. We present a protocol for the development of coproduced aphasia service elements. We will use experience-based codesign (EBCD), an approach that enables service users and providers to collaboratively develop services and care pathways. Drawing on the experiences of people with aphasia, their families and clinicians we will establish priorities for the development of new services and later work together to codesign them.

Methods and analysis This research will be coproduced with people with aphasia (n=30–60), their families (n=30–60) and speech pathologists (n=30–60) in Queensland, Australia, using EBCD. A consumer advisory committee will provide oversight and advice throughout the research. In phase 1, we will use semistructured interviews and the nominal group technique to explore experiences and unmet needs in aphasia rehabilitation. Data will be analysed using thematic analysis and the resulting themes will be prioritised in multistakeholder focus groups. Outcomes of phase 1 will inform future research (phase 2) to codesign services. Financial costs and participant experiences of EBCD will be measured.

Ethics and dissemination Human Research Ethics Committee approval for phase 1 has been obtained (HREC/2020/QRBW/61368). Results will be reported in peer-reviewed journal articles, presented at relevant conferences and, following EBCD suggested best practice, fed back to participants and community members at a celebratory event at completion of the project. The inclusion of service users in all stages of research will facilitate an integrated approach to knowledge translation. A summary of research findings will be made available to participating sites.

  • quality in health care
  • stroke
  • qualitative research
  • rehabilitation medicine
  • stroke medicine
http://creativecommons.org/licenses/by-nc/4.0/

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/.

https://doi.org/10.1136/bmjopen-2020-047398

Statistics from Altmetric.com

    Request Permissions

    If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

    View Full Text

    Supplementary materials

    Footnotes

    • Twitter @AnemaatLisa, @VictoriaJPalmer, @LNL_Copland, @SarahJWallace

    • Contributors All authors contributed to the design and drafting of the research protocol. LA was responsible for the initial draft of this manuscript. SJW, DAC and VJP provided critical review and editing and contributed to revisions and additions. 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), PM (family member of a person with aphasia) contributed to the development of the plain English summary and provided input on methods, recruitment processes and dissemination. All authors have read and approved the final version.

    • Funding This work is supported by The University of Queensland Aphasia Rehabilitation Research Fund (2018–2023) and a New Researcher grant awarded by Speech Pathology Australia (2020). SJW is supported by a National Health and Medical Research Council (NHMRC) Emerging Leadership Investigator Grant (APP1175821) and LA is supported by The University of Queensland-Research Training Programme Scholarship (QARC).

    • Competing interests None declared.

    • 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.