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Revisiting Photovoice: Perceptions of Dementia Among Researchers With Intellectual Disability.

ABSTRACT: There is limited global evidence exploring perceptions of dementia among people with intellectual disabilities. This article presents findings from the first known study where an inclusive research team, including members with intellectual disability, used photovoice methodology to visually represent views of people with intellectual disabilities and dementia. Drawing on Freire's empowerment pedagogy, the study aims were consistent with global photovoice aims: enabling people to visually record critical dialogue about dementia through photography and social change. We investigated the benefits and challenges of photovoice methodology with this population and sought to identify perspectives of dementia from people with intellectual disabilities. Data collected identified issues such as peers "disappearing" and the importance of maintaining friendship as dementia progressed. Although reaching policymakers is a key aim of photovoice, this may not always be achievable, suggesting that revisiting Freire's original methodological aims may lead to improved outcomes in co-produced research with marginalized groups.

SUBMITTER: Watchman K

PROVIDER: S-EPMC7252602 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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Revisiting Photovoice: Perceptions of Dementia Among Researchers With Intellectual Disability.

Watchman Karen K Mattheys Kate K Doyle Andrew A Boustead Louise L Rincones Orlando O

Qualitative health research 20200213 7

There is limited global evidence exploring perceptions of dementia among people with intellectual disabilities. This article presents findings from the first known study where an inclusive research team, including members with intellectual disability, used photovoice methodology to visually represent views of people with intellectual disabilities and dementia. Drawing on Freire's empowerment pedagogy, the study aims were consistent with global photovoice aims: enabling people to visually record ...[more]

PMID: 32052693

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Project description:IntroductionPersons with intellectual disability (ID) are at a higher risk of developing dementia than persons without ID, with an expected earlier onset. Assessment methods for the general population cannot be applied for persons with ID due to their pre-existing intellectual and functional impairments. As there is no agreed-upon measure to assess dementia in persons with ID, multiple instruments for this purpose have been developed and adapted in the past decades. This review aimed to identify all available informant-based instruments for the assessment of dementia in persons with ID, to evaluate and compare them according to their measurement properties, and to provide a recommendation for the most suitable instruments. Additionally, an overview of the amount and quality of research on these instruments will be provided.Methods and analysisThis review will be conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. We will adhere to the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines and use a set of characteristics developed for assessment instruments for persons with ID, the Characteristics of Assessment Instruments for Psychiatric Disorders in Persons with Intellectual Developmental Disorders. Two comprehensive, systematic literature searches will be applied in 10 international databases, including ASSIA, CINAHL, Cochrane Library, ERIC, MEDLINE, PsycINFO, Scopus, Web of Science, OpenGrey and ProQuest Dissertations and Theses Global. Risk of bias and quality assessment will be done according to COSMIN guidelines. We will apply the modified Grading of Recommendations, Assessment, Development and Evaluation approach to rate the overall quality of the available evidence.Ethics and disseminationNo ethics statement is needed for this study. The results will be submitted to a peer-reviewed journal and will be presented at international conferences.

Dataset Information

Revisiting Photovoice: Perceptions of Dementia Among Researchers With Intellectual Disability.

Publications

Revisiting Photovoice: Perceptions of Dementia Among Researchers With Intellectual Disability.

Similar Datasets

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