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

TY - JOUR

T1 - A Rapid Review of Internet Mediated Research Methods with People with Dementia

T2 - Practical, Technical and Ethical Considerations

AU - Phenwan, Tharin

AU - Sixsmith, Judith

AU - McSwiggan, Linda

AU - Buchanan, Deans

PY - 2021/11/1

Y1 - 2021/11/1

N2 - 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.

AB - 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.

KW - Dementia

KW - Inclusive research

KW - Internet research

KW - Online research

KW - Qualitative research

KW - Scoping review

KW - Technology

UR - https://www.scopus.com/pages/publications/85119294655

U2 - 10.46743/2160-3715/2021.5089

DO - 10.46743/2160-3715/2021.5089

M3 - Article

SN - 1052-0147

VL - 26

SP - 3318

EP - 3341

JO - The Qualitative Report

JF - The Qualitative Report

IS - 11

M1 - 2

ER -