A Rapid Review of Internet Mediated Research Methods with People with Dementia: Practical, Technical and Ethical Considerations

Tharin Phenwan (Lead / Corresponding author), Judith Sixsmith, Linda McSwiggan, Deans Buchanan

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Abstract

Doing research with People with Dementia (PwD) can be challenging given that disease symptoms of anxiety, forgetfulness, and fluctuating mental capacity can make recruitment and data collection difficult. Once COVID-19 made face-to-face data collection impractical, using internet-based methods became an alternative option to continue with research. However, data collection with PwD over the internet requires strategies to observe, support, and enable them to engage with research, especially with qualitative approaches. Nine articles were selected via a decade rapid scoping review (undertaken March-June 2020) to identify qualitative online methods used with PwD and associated challenges. Methods used were online interviews, clinical assessment/telemedicine, and textual analysis from blogs, forum posts, and Tweets created by PwD. Practical challenges identified: the researchers’ limited ability to manage the physical and social environment. Technical challenges identified: the need for a high degree of technical support for participants prior and during data collection. Ethical challenges identified, negotiating confidentiality, obtaining valid informed consent, and ensuring data security. Implicit findings found related to how researchers perceived and treated online data retrieved from the internet and how the challenges mentioned in the included articles did not link to dementia symptoms.
Original languageEnglish
Article number2
Pages (from-to)3318-3341
Number of pages24
JournalThe Qualitative Report
Volume26
Issue number11
DOIs
Publication statusPublished - 1 Nov 2021

Keywords

  • Dementia
  • Inclusive research
  • Internet research
  • Online research
  • Qualitative research
  • Scoping review
  • Technology

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