Preferences of people with post-stroke aphasia for aphasia research videos: An international project

被引:2
作者
Finch, Emma [1 ,2 ,3 ]
Pierce, John E. [4 ,5 ]
Pais, Analisa M. [6 ]
Dow-Richards, Carol [7 ]
Reed, Allie [8 ]
Charalambous, Marina [9 ,10 ]
Matos, Maria Assuncao [11 ]
Wallace, Sarah J. [3 ,12 ]
Breitenstein, Caterina [13 ]
机构
[1] West Moreton Heath, Res & Innovat, Ipswich, Qld, Australia
[2] Princess Alexandra Hosp, Speech Pathol Dept, Woolloongabba, Australia
[3] Univ Queensland, Sch Hlth & Rehabil Sci, St Lucia, Australia
[4] Ctr Res Excellence Aphasia Recovery & Rehabil, Bundoora, Australia
[5] La Trobe Univ, Melbourne, Australia
[6] Univ Essex, Colchester, England
[7] Aphasia Recovery Connect, Leland, NC USA
[8] Lingraphica, Princeton, NJ USA
[9] Cyprus Univ Technol, Limassol, Cyprus
[10] Univ Fribourg, Fac Sci & Med, Neurol Unit, Lab Cognit & Neurol Sci, Fribourg, Switzerland
[11] Univ Aveiro, Aveiro Sch Hlth Sci, CINTESISRISE, Aveiro, Portugal
[12] Queensland Aphasia Res Ctr, Brisbane, Australia
[13] Univ Munster, Dept Neurol Inst Translat Neurol, Munster, Germany
基金
英国医学研究理事会;
关键词
Aphasia; Patient and Public Involvement; Preferences; Access to information; research video; COMPREHENSION; STROKE;
D O I
10.1080/02687038.2023.2229030
中图分类号
R36 [病理学]; R76 [耳鼻咽喉科学];
学科分类号
100104 ; 100213 ;
摘要
BackgroundMost aphasia research is published in international, peer-reviewed journals in a format that is inaccessible for people with aphasia (PWA). Video presents an ideal format for disseminating information to PWA in an accessible digital format. No research has explored the preferred format for aphasia research videos from the perspectives of PWA.AimsTo explore the format preferences of PWA for aphasia-accessible research videos.Methods and proceduresThe study involved three stages; all used a semi-structured focus group design. Stage 1 (n = 16 PWA) developed the topic guide. PWA shared opinions about which questions they considered important for Stage 2 interview questions. Stage 2 gathered the votes of PWA (n=40) using these questions. Stage 3 (n = 6 PWA) reviewed the voting results of Stage 2 and collected opinions from PWA about an example video that adhered to the identified preferences. Data analysis for all stages used descriptive statistics (e.g., counts) and qualitative content analysis.Outcomes and resultsWe identified 11 consumer-informed preferences for aphasia-accessible research videos: 1-Speak with normal rate; 2-Tailor video duration to content: 5-10 minutes was most acceptable; 3-Include researcher photos; 4-Use written keywords; 5-Use a mix of images; 6-Include a PWA; 7-No preference for deciding topic; 8-Avoid background music; 9-Provide a summary at the end; 10-Translate into other languages; and 11-Link to resources.ConclusionThese preferences should guide the development of aphasia-accessible research videos, assisting researchers to bridge the evidence-knowledge gap in the aphasia community. Further research is required, including with non-English participants and family members of PWA.
引用
收藏
页码:758 / 769
页数:12
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