Cargando…

Ethical and Methodological Considerations Interviewing Dementia Caregivers

Greater inclusion of people living with dementia (PLWD) and their caregivers in research is a global research priority and an expressed priority of dementia advocacy organizations. Absent inclusion of PLWD and caregivers, our understanding of dementia-related experiences and optimization of care and...

Descripción completa

Detalles Bibliográficos
Autores principales: Cotton, Quinton, Block, Laura, Benson, Clark, Friz, Amanda, Chelgren, Britta, Stroik, Brady, Ploch, Emily, Bykovskyi, Andrea Gilmore
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8680344/
http://dx.doi.org/10.1093/geroni/igab046.1531
_version_ 1784616725262630912
author Cotton, Quinton
Block, Laura
Benson, Clark
Friz, Amanda
Chelgren, Britta
Stroik, Brady
Ploch, Emily
Bykovskyi, Andrea Gilmore
author_facet Cotton, Quinton
Block, Laura
Benson, Clark
Friz, Amanda
Chelgren, Britta
Stroik, Brady
Ploch, Emily
Bykovskyi, Andrea Gilmore
author_sort Cotton, Quinton
collection PubMed
description Greater inclusion of people living with dementia (PLWD) and their caregivers in research is a global research priority and an expressed priority of dementia advocacy organizations. Absent inclusion of PLWD and caregivers, our understanding of dementia-related experiences and optimization of care and caregiving interventions is stymied. Qualitative interviewing techniques constitutes a primary method for obtaining PLWD and caregivers’ perspectives. Yet, there is little guidance on use of qualitative interviewing techniques among PLWD and caregivers or discussion of potential challenges encountered, despite unique vulnerabilities faced throughout the research process, which may be further heightened among historically excluded groups. Meaningful progress toward inclusion of PLWD and their caregivers in dementia research necessitates broader examination of associated methodological and ethical considerations that arise in the conduct of interviews. Drawing from a large multi-site qualitative study of dementia caregivers with exposure to high levels of social disadvantage, we used a multiple-triangulation qualitative approach across interview transcripts, memos, and interviewer discussions to identify methodological and ethical challenges that arose during the interviewing process. Challenges were identified across all phases of research, and included relational concerns with PLWD and family members due to disclosure of sensitive information, risk of re-traumatization in discussing past experiences, multiple roles of caregivers with conflicting perspectives, variable recall capacity, limited prior appraisal of caregiving, and request of interviewers for medical advice or selecting services . We outline events evidencing these challenges and proposed strategies (i.e. use of research consults, interview debriefing) to strengthen research capacity to anticipate and respond to them.
format Online
Article
Text
id pubmed-8680344
institution National Center for Biotechnology Information
language English
publishDate 2021
publisher Oxford University Press
record_format MEDLINE/PubMed
spelling pubmed-86803442021-12-17 Ethical and Methodological Considerations Interviewing Dementia Caregivers Cotton, Quinton Block, Laura Benson, Clark Friz, Amanda Chelgren, Britta Stroik, Brady Ploch, Emily Bykovskyi, Andrea Gilmore Innov Aging Abstracts Greater inclusion of people living with dementia (PLWD) and their caregivers in research is a global research priority and an expressed priority of dementia advocacy organizations. Absent inclusion of PLWD and caregivers, our understanding of dementia-related experiences and optimization of care and caregiving interventions is stymied. Qualitative interviewing techniques constitutes a primary method for obtaining PLWD and caregivers’ perspectives. Yet, there is little guidance on use of qualitative interviewing techniques among PLWD and caregivers or discussion of potential challenges encountered, despite unique vulnerabilities faced throughout the research process, which may be further heightened among historically excluded groups. Meaningful progress toward inclusion of PLWD and their caregivers in dementia research necessitates broader examination of associated methodological and ethical considerations that arise in the conduct of interviews. Drawing from a large multi-site qualitative study of dementia caregivers with exposure to high levels of social disadvantage, we used a multiple-triangulation qualitative approach across interview transcripts, memos, and interviewer discussions to identify methodological and ethical challenges that arose during the interviewing process. Challenges were identified across all phases of research, and included relational concerns with PLWD and family members due to disclosure of sensitive information, risk of re-traumatization in discussing past experiences, multiple roles of caregivers with conflicting perspectives, variable recall capacity, limited prior appraisal of caregiving, and request of interviewers for medical advice or selecting services . We outline events evidencing these challenges and proposed strategies (i.e. use of research consults, interview debriefing) to strengthen research capacity to anticipate and respond to them. Oxford University Press 2021-12-17 /pmc/articles/PMC8680344/ http://dx.doi.org/10.1093/geroni/igab046.1531 Text en © The Author(s) 2021. Published by Oxford University Press on behalf of The Gerontological Society of America. https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) ), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Abstracts
Cotton, Quinton
Block, Laura
Benson, Clark
Friz, Amanda
Chelgren, Britta
Stroik, Brady
Ploch, Emily
Bykovskyi, Andrea Gilmore
Ethical and Methodological Considerations Interviewing Dementia Caregivers
title Ethical and Methodological Considerations Interviewing Dementia Caregivers
title_full Ethical and Methodological Considerations Interviewing Dementia Caregivers
title_fullStr Ethical and Methodological Considerations Interviewing Dementia Caregivers
title_full_unstemmed Ethical and Methodological Considerations Interviewing Dementia Caregivers
title_short Ethical and Methodological Considerations Interviewing Dementia Caregivers
title_sort ethical and methodological considerations interviewing dementia caregivers
topic Abstracts
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8680344/
http://dx.doi.org/10.1093/geroni/igab046.1531
work_keys_str_mv AT cottonquinton ethicalandmethodologicalconsiderationsinterviewingdementiacaregivers
AT blocklaura ethicalandmethodologicalconsiderationsinterviewingdementiacaregivers
AT bensonclark ethicalandmethodologicalconsiderationsinterviewingdementiacaregivers
AT frizamanda ethicalandmethodologicalconsiderationsinterviewingdementiacaregivers
AT chelgrenbritta ethicalandmethodologicalconsiderationsinterviewingdementiacaregivers
AT stroikbrady ethicalandmethodologicalconsiderationsinterviewingdementiacaregivers
AT plochemily ethicalandmethodologicalconsiderationsinterviewingdementiacaregivers
AT bykovskyiandreagilmore ethicalandmethodologicalconsiderationsinterviewingdementiacaregivers