Aphasia research set to make important improvements for patients
Researchers from the Queensland Aphasia Research Centre (QARC) have completed stage one of the group’s first project – co-design services for people with post-stroke aphasia a condition that affects a person’s ability to express and understand written and spoken language. The research draws on the experiences of people with aphasia, their families, and speech pathologists across Queensland, and prioritise and develop new services.
The Centre, which comprises Metro North and University of Queensland researchers, is based at the Surgical, Treatment and Rehabilitation Service (STARS). Together with speech pathologists from across Metro North, the team have generated 773 recommendations to help improve aphasia services and have produced a co-authored protocol paper for this research, published in the British Medical Journal (BMJ) https://bmjopen.bmj.com/content/11/11/e047398.
The research is overseen by an advisory committee who provides expert feedback on study procedures, interpretation, and dissemination of results (e.g., as co-authors on papers). A consumer advisory group of people with aphasia and their families, had guided the research ensuring their authentic inclusion, trust and respect. Consumers input into the project is highly valued and members of the consumer advisory group have been invited to be co-authors on publications and presentations. Additionally, Mr Geoffrey Binge (RBWH Cultural Capabilities Officer) has provided advice on the inclusion of Aboriginal and Torres Strait Islander people, ensuring that our research is culturally safe and responsive.
Support for those with communication impairments is imperative to successful engagement in co-design activities. As such communication accessible materials are prepared for people with aphasia in an appropriate aphasia friendly format. For example, participants with aphasia are supported throughout project activities using supported communication techniques. This includes using multi-modal communication techniques (e.g.: gestures, drawing, images or written key words) to facilitate comprehension, allowing for increased processing time or ensuring communication options accommodate fixed choice responses (e.g.: yes-no questions) to facilitate participation, and verifying responses.
QARC’s Dr Sarah Wallace said involving patients and family members was integral to the project’s success. “Together with patients and speech pathologists across Queensland, we were able to garner valuable insights as part of the focus group process,” Dr Wallace said. “We had six people with aphasia and four family members of patients join us in these focus groups, providing feedback on study procedures, interpretations and the dissemination of results. It’s been incredible value to have consumer co-design our project.”
- 21 sites within Metro North Health have been involved.
- 62 speech pathologists generated 412 recommendations, equating to 36 priorities for improvements to aphasia services
- 62 consumers (32 people with aphasia, 30 significant others) have generated 170 (people with aphasia) and 191 (significant others) recommendations, equating to 34 and 38 priorities respectively.
- Findings to date have been presented at 12 conferences (national & international) and the consumer advisory group
- People with aphasia, their significant others and health professionals are voting on their top priorities for aphasia service development.
- Reach consensus on the top priorities for aphasia service development.
- Complete the design of the first service improvement project to emerge from the research.