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Identifying preschool measures most predictive of language outcomes at 11 years in the Early Language in Victoria Study ...
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An umbrella review of aphasia intervention description in research: The AsPIRE project
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In: Research outputs 2014 to 2021 (2022)
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New perspectives, theory, method, and practice: Qualitative research and innovation in speech-language pathology
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In: Research outputs 2022 to 2026 (2022)
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An aphasia research agenda – a consensus statement from the collaboration of aphasia trialists
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In: Research outputs 2014 to 2021 (2022)
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The 'real-life' benefit of hearing preservation cochlear implantation in the paediatric population ...
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Participants’ Satisfaction with Functional Treatment Goals
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In: Honors College Theses (2022)
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Speech Changes After Transcranial Direct Current Stimulation in Individuals Diagnosed With Parkinson's Disease
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In: Communication Disorders Faculty Publications (2022)
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Caregiver Experiences of Feeding Instruction for Infants Born with Cleft Lip and/or Palate
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In: Masters Theses & Specialist Projects (2022)
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The educational needs of school-aged students with Developmental Language Disorder: The perspectives of key stakeholders ...
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Trade-offs between informativeness and processing load in autistic preschoolers: Experiment 1 ...
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Focused interests and word learning in autistic preschoolers ...
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Trade-offs between informativeness and processing load in autistic preschoolers: Experiment 2 ...
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The effect of competing noise on speech recognition for children who are non-native listeners: a scoping review protocol ...
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Predictors of poststroke aphasia recovery: A systematic review-informed individual participant data meta-analysis
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In: Research outputs 2014 to 2021 (2021)
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Patients’ experiences of a communication enhanced environment model on an acute/slow stream rehabilitation and a rehabilitation ward following stroke: A qualitative description approach
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In: Research outputs 2014 to 2021 (2021)
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Creating a theoretical framework to underpin discourse assessment and intervention in aphasia
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In: Research outputs 2014 to 2021 (2021)
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Developing person-centred goal setting resources with and for people with aphasia: A multi-phase qualitative study
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In: Research outputs 2014 to 2021 (2021)
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An exploration of the relationship between aphasia therapy, depression and quality of life in post-stroke patients after rehabilitation at 12 and 26 weeks after stroke: A VERSE sub-study
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Rashid Khan, Alia. - : Edith Cowan University, Research Online, Perth, Western Australia, 2021
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In: Theses: Doctorates and Masters (2021)
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The ethics of patient and public involvement across the research process: Towards partnership with people with aphasia
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In: Research outputs 2014 to 2021 (2021)
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Abstract:
Background: Conducting Patient and Public Involvement (PPI) in health research is a way of building knowledge that incorporates the experience of service users, adds research impact, and helps avoid wasting resources on findings that have little relevance to people or cannot be implemented. We argue that there is a need to extend ethical considerations currently focused on research participants with aphasia to encompass and guide expectations of involvement in partnerships with people with aphasia across the research lifecycle. Method: We use the 2018 revision of the Australian National Statement on Ethical Conduct in Human Research as the framework for this article. The National Statement is underpinned by values based on respect for human beings, research merit and integrity, justice, and beneficence. While the National Statement outlines the ethical standards for conducting human research with research participants in Australia, the ideas and principles within it draw on international norms. Building on the seven elements of the research process introduced in Chapter 3 of the National Statement, we develop a model for examining ethics and PPI across the research lifecycle. This model revolves around an extra phase, Element Zero, required for the preparation of PPI for both researchers and research partners with aphasia. Results: There are many ethical considerations when involving patients and members of the public across the research lifecycle. Ethical questions that arise in relation to patients and the public as partners (whether in a role of consultant, advisor, collaborator or within user-controlled projects) may differ from those associated with participants. The nature of the relationships built through the PPI process requires a clear extension of the remit for research ethics to encompass ethical reflection both before the design of a project and after a project has ended as represented by the Ethics andPPI Research Lifecycle Model. Conclusion: The role of people with aphasia as partners in research recognises their expertise and potential to improve the relevance and impact of research endeavours. Reflecting on the ethical implications of this is crucial, protecting, empowering and enabling both researchers and partners with aphasia to engage with each other through respectful and positive research relationships.
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Keyword:
Aphasia; Communication Sciences and Disorders; engagement; ethics; involvement; Medicine and Health Sciences; research
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URL: https://ro.ecu.edu.au/ecuworkspost2013/10143
https://ro.ecu.edu.au/cgi/viewcontent.cgi?article=11149&context=ecuworkspost2013
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