TY - JOUR
T1 - Nothing About us Without us
T2 - Research Methods Enabling Participation for Aged Care Residents Who Have Dementia
AU - Shannon, Kay
AU - Montayre, Jed
AU - Neville, Stephen
N1 - Funding Information:
The author(s) disclosed receipt of the following financial support for the research for this article: This work was supported by the Hope Foundation for Research on Ageing scholarship awarded to Dr Kay Shannon in 2017, 2018, and 2019.
Publisher Copyright:
© The Author(s) 2021.
PY - 2021/12/6
Y1 - 2021/12/6
N2 - The voices of people living with dementia are rarely included in primary data collection due to cognitive challenges and the concerns of researchers and others about limitations associated with informed consent. This article presents a successfully implemented, step-by-step process enabling effective participation of aged care residents with dementia using a case study approach. Three methodological and critical steps in data collection were identified that led to the successful participation of residents with dementia in research. The process corresponds with, yet is uniquely different from the common elements in the qualitative research process. These are active participation during data collection, researcher familiarization with participants, and their set interval and time-lapse considerations (timeline). The process of involvement of people with dementia in research should proceed at a pace that is guided by the participants. It is important to consider participant interview pace, pattern, and the conversation time points when interruptions occur, to restart the whole interview process. Researchers need to facilitate active engagement by building and maintaining authentic relationships with the participants.
AB - The voices of people living with dementia are rarely included in primary data collection due to cognitive challenges and the concerns of researchers and others about limitations associated with informed consent. This article presents a successfully implemented, step-by-step process enabling effective participation of aged care residents with dementia using a case study approach. Three methodological and critical steps in data collection were identified that led to the successful participation of residents with dementia in research. The process corresponds with, yet is uniquely different from the common elements in the qualitative research process. These are active participation during data collection, researcher familiarization with participants, and their set interval and time-lapse considerations (timeline). The process of involvement of people with dementia in research should proceed at a pace that is guided by the participants. It is important to consider participant interview pace, pattern, and the conversation time points when interruptions occur, to restart the whole interview process. Researchers need to facilitate active engagement by building and maintaining authentic relationships with the participants.
KW - case study
KW - critical realism
KW - methods in qualitative inquiry
KW - observational research
KW - social justice
UR - http://www.scopus.com/inward/record.url?scp=85120846622&partnerID=8YFLogxK
U2 - 10.1177/16094069211055938
DO - 10.1177/16094069211055938
M3 - Journal article
AN - SCOPUS:85120846622
SN - 1609-4069
VL - 20
JO - The International Journal of Qualitative Methods
JF - The International Journal of Qualitative Methods
ER -