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Special Issue: Public and Patient Involvement (PPI)

The ethics of patient and public involvement across the research process: towards partnership with people with aphasia

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Received 15 Nov 2020, Accepted 23 Feb 2021, Published online: 31 Mar 2021

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Read on this site (6)

Marina Charalambous & Maria Kambanaros. (2023) How to Engage People with Aphasia in Research: the Before Recommendations. Journal of Clinical Practice in Speech-Language Pathology 25:3, pages 129-133.
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Jane Bickford, Deborah Hersh & Mark Israel. (2023) “I won’t be able to speak for three days after”: Ethical and practical considerations in qualitative research involving people with a laryngectomy. International Journal of Speech-Language Pathology 25:5, pages 746-756.
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M. Cruice, S. Aujla, J. Bannister, N. Botting, M. Boyle, N. Charles, V. Dhaliwal, S. Grobler, D. Hersh, J. Marshall, S. Morris, M. Pritchard, L. Scarth, R. Talbot & L. Dipper. (2022) Creating a novel approach to discourse treatment through coproduction with people with aphasia and speech and language therapists. Aphasiology 36:10, pages 1159-1181.
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Ruth Mc Menamin, Jytte Isaksen, Molly Manning & Edel Tierney. (2022) Distinctions and blurred boundaries between qualitative approaches and public and patient involvement (PPI) in research. International Journal of Speech-Language Pathology 24:5, pages 515-526.
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Ciara Shiggins, Donna Coe, Louise Gilbert, Aphasia Research Collaboration & Kathryn Mares. (2022) Development of an “Aphasia-Accessible Participant in Research Experience Survey” through co-production. Aphasiology 0:0, pages 1-34.
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Ruth McMenamin, Michael Griffin, Basia Grzybowska & Carole Pound. (2021) Working together: experiences of people with aphasia as co-researchers in participatory health research studies. Aphasiology 0:0, pages 1-22.
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Articles from other publishers (18)

Caterina Breitenstein, Sarah J. Wallace, Natalie Gilmore, Emma Finch, Kathryn Pettigrove, Marian C. BradyMarian C. Brady, Caterina Breitenstein, Katerina Hilari, Sarah J. Wallace, Ruth McMenanim, Hanne Gram Simonsen, Caroline Jagoe, Abena Asiedua Owusu Antwi, Natalie Gilmore, Myzoon Ali, Erin Godecke, Seçkin Arslan, Claudia Peñaloza, Cathy Price, Saša Filipovic, Miranda L. Rose, Lucy Dipper, Suzanne Beeke, Lisa Anemaat, David Copland, Carolina Méndez-Orellana, Natalie Douglas & Kirstine Shrubsole. (2024) Invaluable Benefits of 10 Years of the International Collaboration of Aphasia Trialists (CATs). Stroke 55:4, pages 1129-1135.
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Katrine Staats, Ellen Karine Grov & Oscar Tranvåg. (2024) Framework for Patient and Informal Caregiver Participation in Research (PAICPAIR) Part 2. Advances in Nursing Science 47:2, pages 188-201.
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Jessica Henihan, Rebecca Henihan & Caroline Jagoe. (2024) Family Therapy as an Intervention for Adults With Aphasia and Other Communication Disabilities After Acquired Brain Injury: A Scoping Review. Rehabilitation Counseling Bulletin.
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Yejin Lee, Marjorie L. Nicholas & Lisa Tabor Connor. (2024) Mental Health Mediators for Subjective, Not Objective, Cognition, and Community Participation Poststroke. OTJR: Occupational Therapy Journal of Research.
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Sheila MacDonald & Elyse Shumway. (2022) Optimizing our evidence map for cognitive–communication interventions: How it can guide us to better outcomes for adults living with acquired brain injury. International Journal of Language & Communication Disorders 59:2, pages 623-647.
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Marina Charalambous, Alexia Kountouri, Jürg Rainer Schwyter, Jean-Marie Annoni & Maria Kambanaros. (2023) The development of the People with Aphasia and Other Layperson Involvement (PAOLI) framework for guiding patient and public involvement (PPI) in aphasia research. Research Involvement and Engagement 9:1.
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Nicole Brown. (2022) Research ethics in a changing social sciences landscape. Research Ethics 19:2, pages 157-165.
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Yvonne Fitzmaurice, Suzanne Beeke, Jytte Isaksen, Una Cunningham, Caroline Jagoe, Éidín Ní Shé & Ruth McMenamin. (2024) Communication partner training for student health and social care professionals engaging with people with stroke acquired communication difficulties: A protocol for a realist review.. HRB Open Research 6, pages 60.
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Yvonne Fitzmaurice, Suzanne Beeke, Jytte Isaksen, Una Cunningham, Caroline Jagoe, Éidín Ní Shé & Ruth McMenamin. (2023) Communication partner training for student health and social care professionals engaging with people with stroke acquired communication difficulties: A realist review.. HRB Open Research 6, pages 60.
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Gretchen Szabo, Jessica Obermeyer, Angelique Cauthorn, Michael Hornbostel & Joe Flacco. (2023) Combining Stakeholder-Engaged Research and the Life Participation Approach to Aphasia. Topics in Language Disorders 43:1, pages 19-29.
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Esther S. Kim, Kira Mauriks, Carlee Wilson, Leah Auch, Herman Koo, Daralynn Swensrude, Jessica Laccett & Andrea Ruelling. (2023) Barriers and Facilitators to Communication Accessibility as Perceived by People With Aphasia. Topics in Language Disorders 43:1, pages 76-90.
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Rocío Palomo-Carrión, Caline Cristine De Araújo Ferreira Jesus, Camila Araújo Santos Santana, Raquel Lindquist, Roselene Alencar, Helena Romay-Barrero, Elena Contell-Gonzalo, Karolinne Souza Monteiro, Elena Pinero-Pinto & Egmar Longo. (2022) Co-Design of an Intervention to Increase the Participation in Leisure Activities Including Adolescents with Cerebral Palsy with GMFCS Levels IV and V: A Study Protocol. Journal of Clinical Medicine 12:1, pages 182.
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Victoria Shepherd, Kerenza Hood & Fiona Wood. (2022) Unpacking the ‘black box of horrendousness’: a qualitative exploration of the barriers and facilitators to conducting trials involving adults lacking capacity to consent. Trials 23:1.
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Marina Charalambous, Phivos Phylactou, Alexia Kountouri, Marios Serafeim, Loukia Psychogios, Jean-Marie Annoni & Maria Kambanaros. (2022) Adaptation of the Aphasia Impact Questionnaire-21 into Greek: A Reliability and Validity Study. Clinical and Translational Neuroscience 6:4, pages 24.
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Alyson Kwok, Deacon Cheung, Maysyn Gordon, Evan Mudryk & Patricia J. Manns. (2022) Stroke survivors partner in research: a case example of collaborative processes. Research Involvement and Engagement 8:1.
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Marina Charalambous, Alexia Kountouri, Phivos Phylactou, Ioanna Triantafyllidou, Jean-Marie Annoni & Maria Kambanaros. (2022) The views of people living with chronic stroke and aphasia on their potential involvement as research partners: a thematic analysis. Research Involvement and Engagement 8:1.
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Carole Anglade, Michel Tousignant & Isabelle Gaboury. (2022) Rigorous Qualitative Research Involving Data Collected Remotely From People With Communication Disorders: Experience From a Telerehabilitation Trial. Neurorehabilitation and Neural Repair 36:8, pages 557-564.
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Simon Horton, David Barnston, Janice Barnston, Colin Bell, Joyce Bell, Chris Coath, Ian Duffy, Jytte Isaksen & Linda Watson. (2021) In it for the long haul: a reflective account of collaborative involvement in aphasia research and education. Aphasiology, pages 1-36.
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