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Research Articles

The use of participatory workshops in the development of a new version of the Communication Disability Profile (CDP)

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Pages 1916-1943 | Received 24 Jun 2022, Accepted 12 Oct 2022, Published online: 08 Nov 2022

References

  • Alexandre, N. M. C., & Coluci, M. Z. O. (2011). Validade de conteúdo nos processos de construção e adaptação de instrumentos de medidas. Ciência & Saúde Coletiva, 16(7), 3061–3068. https://doi.org/10.1590/S1413-81232011000800006
  • Alliance. (2001). A Facilitators’ Guide to Participatory Workshops with NGOs/CBOs Responding to HIV/AIDS. 1038860, 1–10.
  • Andersson, S., & Fridlund, B. (2002). The aphasic person’s views of the encounter with other people: a grounded theory analysis. Journal of Psychiatric and Mental Health Nursing, 9(3), 285–292. https://doi.org/10.1046/j.1365-2850.2002.00480.x
  • ASHA. (2022). Clinical Topics: Aphasia. https://www.asha.org/practice-portal/clinical-topics/aphasia/
  • Berg, K., Isaksen, J., Wallace, S. J., Cruice, M., Simmons-Mackie, N., & Worrall, L. (2022). Establishing consensus on a definition of aphasia: an e-Delphi study of international aphasia researchers. Aphasiology, 36(4), 385–400. https://doi.org/10.1080/02687038.2020.1852003
  • Brennan, A., Worrall, L., & McKenna, K. (2005). The relationship between specific features of aphasia-friendly written material and comprehension of written material for people with aphasia: An exploratory study. Aphasiology, 19(8), 693–711. https://doi.org/10.1080/02687030444000958
  • Byng, S., & Duchan, J. F. (2005). Social model philosophies and principles: Their applications to therapies for aphasia. Aphasiology, 19(10–11), 906–922. https://doi.org/10.1080/02687030544000128
  • Caldas, A. C. (1979). Diagnóstico e evolução das afasias de causa vascular. Universidade de Lisboa.
  • Castro, S., Gomes, I., & Caló, S. (2007). PALPA-P – Provas de Avaliação da Linguagem e da Afasia em Português. CEGOC.
  • Charalambous, M., Kambanaros, M., & Annoni, J. M. (2020). Are people with aphasia (PWA) involved in the creation of quality of life and aphasia impact-related questionnaires? A scoping review. Brain Sciences, 10(10), 1–23. https://doi.org/10.3390/brainsci10100688
  • Chue, W. L., Rose, M. L., & Swinburn, K. (2010). The reliability of the Communication Disability Profile: A patient-reported outcome measure for aphasia. Aphasiology, 24(6–8), 940–956. https://doi.org/10.1080/02687030903490541
  • Dalemans, R. J. P., Witte, L., Wade, D., & Heuvel, W. (2010). Social participation through the eyes of people with aphasia. International Journal of Language & Communication Disorders/Royal College of Speech & Language Therapists, 45(5), 537–550. https://doi.org/10.3109/13682820903223633
  • Damásio, A. (1973). Neurologia da Linguagem. Universidade de Lisboa.
  • Davis, L. L. (1992). Instrument review: Getting the most from a panel of experts. Applied Nursing Research, 5(4), 194–197. https://doi.org/10.1016/S0897-1897(05)80008-4
  • de Vet, H. C. W., Terwee, C. B., Mokkink, L. B., & Knol, D. L. (2011). Measurement in Medicine. Cambridge University Press. https://doi.org/10.1017/CBO9780511996214
  • Dorze, G. le, & Brassard, C. (1995). A description of the consequences of aphasia on aphasic persons and their relatives and friends, based on the WHO model of chronic diseases. Aphasiology, 9(3), 239–255. https://doi.org/10.1080/02687039508248198
  • Engelter, S. T., Gostynski, M., Papa, S., Frei, M., Born, C., Ajdacic-Gross, V., Gutzwiller, F., & Lyrer, P. A. (2006). Epidemiology of aphasia attributable to first ischemic stroke: Incidence, severity, fluency, etiology, and thrombolysis. Stroke, 37(6), 1379–1384. https://doi.org/10.1161/01.STR.0000221815.64093.8c
  • Ferro, J. (1986). Neurologia do comportamento. Estudo da correlação com a tomografia axial computorizada. Universidade de Lisboa.
  • Fotiadou, D., Northcott, S., Chatzidaki, A., & Hilari, K. (2014). Aphasia blog talk: How does stroke and aphasia affect a person’s social relationships? Aphasiology, 28(11), 1281–1300. https://doi.org/10.1080/02687038.2014.928664
  • Frattali, C. M. (1992). Functional assessment of communication: Merging public policy with clinical views. Aphasiology, 6(1), 63–83. https://doi.org/10.1080/02687039208248577
  • Frattali, C. M. (1998). Measuring Outcomes in Speech-language Pathology. Thieme.
  • Galliers, J., Wilson, S., Muscroft, S., Marshall, J., Roper, A., Cocks, N., & Pring, T. (2011). Accessibility of 3D Game Environments for People with Aphasia: An Exploratory Study. The Proceedings of the 13th International ACM SIGACCESS Conference on Computers and Accessibility, 139–146. https://doi.org/10.1145/2049536.2049562
  • Galliers, J., Wilson, S., Roper, A., Cocks, N., Marshall, J., Muscroft, S., & Pring, T. (2012). Words are not enough. Proceedings of the 12th Participatory Design Conference on Research Papers: Volume 1 - PDC ’12, 51. https://doi.org/10.1145/2347635.2347643
  • Garcia, E., & Connor, L. T. (2011). Understanding Barriers and Facilitators to Participation in People with Aphasia a Qualitative Approach. Center for Social Development, Washington University, St. Louis, USA.
  • Ghidella, C., Murray, S., Smart, M., McKenna, K., & Worrall, L. (2005). Aphasia websites: An examination of their quality and communicative accessibility. Aphasiology, 19(12), 1134–1146. https://doi.org/10.1080/02687030500337871
  • Grant, J. S., & Davis, L. L. (1997). Focus on Quantitative Methods Selection and Use of Content Experts for Instrument Development. Research in Nursing and Health, 20, 269–274.
  • Grawburg, M., Howe, T., Worrall, L., & Scarinci, N. (2013). A qualitative investigation into third-party functioning and third-party disability in aphasia: Positive and negative experiences of family members of people with aphasia. Aphasiology, 27(7), 828–848. https://doi.org/10.1080/02687038.2013.768330
  • Kagan, A., Black, S. E., Duchan, F. J., SimmonsJ., SimmonsMackie, N., & Square, P. (2001). Training volunteers as conversation partners using “Supported Conversation for Adults with Aphasia” (SCA): a controlled trial. Journal of Speech, Language, and Hearing Research : JSLHR, 44(3), 624638.624638.
  • Kagan, A., & Simmons-Mackie, N. (2007). Beginning With the End outcome-Driven Assessment and Intervention With Life Participation in Mind. Topics in Language Disorders, 27(4), 309–317.
  • Kanji, N., & Greenwood, L. (2001). Participatory approaches to research and development in IIED: Learning from experience. IED Bookshop, London, UK.
  • Kearns, K. P. (1991). Functional Outcome: Methodological Considerations. Proceedings of the Clinical Aphasiology Conference, Destin, FL.
  • Lamey, D. (2018). The Evolution of Technology: Past, Present and Future | DiscoverTec. https://www.discovertec.com/blog/evolution-of-technology
  • Laska, A. C., Hellblom, A., Murray, V., Kahan, T., & Von Arbin, M. (2001). Aphasia in acute stroke and relation to outcome. Journal of Internal Medicine, 249(5), 413–422. https://doi.org/10.1046/j.1365-2796.2001.00812.x
  • Leal, A., Jesus, L. M. T., Gomes, A., Couto, P., & Matos, M. (2014). Aphasia Assessment by the Portuguese Speech and Language Therapists. Revista de Saúde Pública, 48, 291.
  • Leal, G. (2006). Avaliação funcional da pessoa com afasia: construção de uma escala. Re(Habilitar), 3, 7–24.
  • Leung, S. F., & Arthur, D. (2000). The alcohol use disorders identification test (AUDIT): validation of an instrument for enhancing nursing practice in Hong Kong. International Journal of Nursing Studies, 37(1), 57–64. https://doi.org/10.1016/S0020-7489(99)00052-8
  • Martin, N., Thompson, K. C., & Worrall, L. (2008). Aphasia Rehabilitation - The Impairment and its Consequences (2008th ed.). Plural Publishing Group.
  • Matos, M. (2012). Níveis de Actividade e Participação das Pessoas com Afasia: Desenvolvimento de Instrumentos de Avaliação Portugueses [Activity and Participation Levels of People With Aphasia: Development of Portuguese Assessment Tools] [ Ph.D. Thesis]. University of Aveiro.
  • Matos, M., & Jesus, L. M. T. (2011). Mini-Mental State Modificado (MMSM)(Processo INPI 483183 com despacho de concessão em 3/8/2011, inserido no Boletim da Propriedade Industrial Número 2011/08/08 (150/ 2011); Deferimento pela IGAC em 4/07/2011 – No 3303/2011).
  • Matos, M., Jesus, L. M. T., & Cruice, M. (2014). Assessment of aphasia in Portugal: Past, present and future. Stem-, Spraak- En Taalpathologie, 19, 78–83.
  • Matos, M., Jesus, L. M. T., Cruice, M., & Gomes, A. A. (2010). Portuguese translation and adaptation of the Communication Disability Profile (CDP) and the Participation Objective, Participation Subjective (POPS) Tools. 28th World Congress of the International Association of Logopedics and Phoniatrics (IALP 2010), July 2014, 60–63.
  • Mc Menamin, R., Tierney, E., & mac Farlane, A. (2015). “Who decides what criteria are important to consider in exploring the outcomes of conversation approaches? A participatory health research study.” Aphasiology, 29(8), 914–938. https://doi.org/10.1080/02687038.2015.1006564
  • Mohr, W. K., & Tulman, L. J. (2000). Children Exposed to Violence: Measurement Considerations within an Ecological Framework. Advances in Nursing Science, 23(1), 59–68. https://doi.org/10.1097/00012272-200009000-00009
  • Murray, L., & Coppens, P. (2013). Formal and Informal Assessment of Aphasia. In Papathanasiou, Ilias, Coppens, Patrick Potagas, Constantin. Aphasia and Related Neurogenic Communication Disorders. Jones &Bartlett Learning.
  • Papathanasiou, I., Coppens, P., & Potagas, C. (2011). Aphasia and Related Neurogenic Communication Disorders (Vol. 3). David D. Cella.
  • Parr, S. (1994). Coping with aphasia: Conversations with 20 aphasic people. In Aphasiology (Vol. 8). https://doi.org/10.1080/02687039408248670
  • Parr, S. (1996). Everyday literacy in aphasia: Radical approaches to functional assessment and therapy. Aphasiology, 10(5), 469–479. https://doi.org/10.1080/02687039608248426
  • Parr, S. (2007). Living with severe aphasia: Tracking social exclusion. Aphasiology, 21(1), 98–123. https://doi.org/10.1080/02687030600798337
  • Pearl, G., Sage, K., & Young, A. (2011). Involvement in volunteering: an exploration of the personal experience of people with aphasia. Disability and Rehabilitation, 33(19–20), 1805–1821. https://doi.org/10.3109/09638288.2010.549285
  • Pierce, R. (1996). Read and write what you want to: What’s so radical? Aphasiology, 10(5), 480–483. https://doi.org/10.1080/02687039608248427
  • PORDATA. (2020). pordata. https://www.pordata.pt/Portugal/População+estrangeira+com+estatuto+legal+de+residente+total+e+por+algumas+nacionalidades-24
  • Pound, C., Parr, S., Lindsay, J., & Woolf, C. (2002). Beyond aphasia. Therapies for living with communication disability (Oxon UK). Speechmark Publishing Ltd.
  • Reis, A., Faísca, L., Ingvar, M., & Petersson, K. M. (2006). Color makes a difference: Two-dimensional object naming in literate and illiterate subjects. Brain and Cognition, 60(1), 49–54. https://doi.org/10.1016/j.bandc.2005.09.012
  • Rose, T. A., Worrall, L. E., Hickson, L. M., & Hoffmann, T. C. (2011). Aphasia friendly written health information: content and design characteristics. International Journal of Speech-Language Pathology, 13(4), 335–347. https://doi.org/10.3109/17549507.2011.560396
  • Rose, T. A., Worrall, L. E., & McKenna, K. T. (2003). The effectiveness of aphasia-friendly principles for printed health education materials for people with aphasia following stroke. Aphasiology, 17(10), 947–963. https://doi.org/10.1080/02687030344000319
  • Rose, T., Worral, L., & McKenna, K. (2003). The effectiveness of aphasia‐friendly principles for printed health education materials for people with aphasia following stroke. Aphasiology, 17(10), 947–963.
  • Rose, T., Worrall, L., Hickson, L., & Hoffmann, T. (2010). Do People With Aphasia Want Written Stroke and Aphasia Information? A Verbal Survey Exploring Preferences for When and How to Provide Stroke and Aphasia Information. Topics in Stroke Rehabilitation, 17(2), 79–98. https://doi.org/10.1310/tsr1702-79
  • Simmons-Mackie, N., & Damico, J. S. (2007). Access and social inclusion in aphasia: Interactional principles and applications. Aphasiology, 21(1), 81–97. https://doi.org/10.1080/02687030600798311
  • Simmons‐Mackie, N., & Kagan, A. (2007). Application of the ICF in Aphasia. Semin Speech Lang, 28(4), 244–253. https://doi.org/10.1055/s-2007-986521
  • Simmons-Mackie, N., Kagan, A., Charles Victor, J., Rowland, A. C., Mok, A., Hoch, J. S., Huijbregts, M., & Streiner, D. L. (2014). The assessment for living with aphasia: reliability and construct validity. International Journal of Speech-Language Pathology.
  • Spreen, O., & Risser, A. (2003). Assessment of aphasia. Oxford University Press.
  • Streiner, D. L., Norman, G. R., & Cairney, J. (2015). Health Measurement Scales (Vol. 1). Oxford University Press. https://doi.org/10.1093/med/9780199685219.001.0001
  • Swinburn, K., & Byng, S. (2006). The Communication Disability Profile. Connect - the communication disability network.
  • Terwee, C. B., Prinsen, C. A. C., Chiarotto, A., Westerman, M. J., Patrick, D. L., Alonso, J., Bouter, L. M., de Vet, H. C. W., & Mokkink, L. B. (2018). COSMIN methodology for evaluating the content validity of patient-reported outcome measures: a Delphi study. Quality of Life Research, 27(5), 1159–1170. https://doi.org/10.1007/s11136-018-1829-0
  • Threats, T. (2008). Use of the ICF for clinical practice in speech-language pathology. International Journal of Speech-Language Pathology, 10(1–2), 50–60. https://doi.org/10.1080/14417040701768693
  • WHO. (2001). International Classification of Functioning, Disability and Health (ICF). Geneve: World Health Organization (WHO).
  • Worrall, L. (1992). Functional communication assessment: An australian perspective. Aphasiology, 6(1), 105–110. https://doi.org/10.1080/02687039208248581
  • Worrall, L., & Cruice, M. (2005). Why the WHO ICF and QOL constructs do not lend themselves to programmatic appraisal for planning therapy for aphasia. A commentary on Ross and Wertz, “Advacing appraisal: Aphasia and the WHO.” Aphasiology, 19, 885–893.
  • Worrall, L., & Frattali, C. M. (2011). Neurogenic Communication Disorders: A Functional Approach.
  • Worrall, L., McCooey, R., Davidson, B., Larkins, B., & Hickson, L. (2002). The Validity of Functional Assessments of Communication and the Activity/Participation Components of the ICIDH-2: Do They Reflect What Really Happens in Real-Life?. Journal of Communication Disorders, 35(2), 107–137.
  • Worrall, L., Papathanasiou, I., & Sherratt, S. (2013). “Therapy approaches to Aphasia.” In I. Papathanasiou, P. Coppens, & C. Potagas (Eds.), Aphasia and Related Neurogenic Communication Disorders (pp. 95–112). Jones & Bartlett Learning.
  • Zemva, N. (1999). Aphasic patients and their families: wishes and limits. Aphasiology, 13(3), 219–224. https://doi.org/10.1080/026870399402190