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 - http://www.scopus.com/inward/record.url?scp=85119294655&partnerID=8YFLogxK
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 -