Ethical and Methodological Considerations for Evaluating Participant Views on Alzheimer’s and Dementia Research
Bibliographic Data
| ID | 12807157 |
|---|---|
| Authors | Clark Benson (0000-0002-6953-9245, University of Wisconsin–Madison), Amanda M Friz (0000-0003-2524-0986, University of Wisconsin–Madison), Shannon Mullen (University of Wisconsin–Madison), Laura Block (0009-0007-3386-1615, University of Wisconsin–Madison), Andrea Gilmore‐Bykovskyi (0000-0003-4930-3558, William S. Middleton Memorial Veterans Hospital, corresponding author) |
| Year | 2020 |
| Volume | 16 |
| Issue | 1-2 |
| Pages | 88-104 |
| Publication date | 2020-11-26 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Journal of Empirical Research on Human Research Ethics (JOURNAL) |
| Journal identifiers | ISSN: 1556-2646 • E-ISSN: 1556-2654 |
| Publisher | SAGE Publishing (PUBLISHER • US) |
| DOI | 10.1177/1556264620974898 |
| PMID | 33238781 |
| OpenAlex | W3107106906 |
| Language | EN |
| Citations received | 1 |
| References cited | 48 |
The urgent need to expand enrollment in Alzheimer's disease and related dementia (ADRD) research has synergized calls for an empiric science of research recruitment, yet, progress in this area is hindered by challenges to measuring views toward ADRD research. This paper reports ethical and methodological considerations identified through a prospective qualitative study investigating ADRD patient and caregiver views on research recruitment and participation surrounding acute illness. Ethical and methodological considerations were identified through a combination of memoing, collaboration with a Community Advisory Board (CAB), and analysis of interview data from ADRD patients ( N = 3) and/or caregivers ( N = 28). These included risk for undue influence attributable to role ambiguity/motivational misconceptions, divergent decision-making preferences, bias contributing to low referrals of ADRD participants, and difficulty answering abstract/hypothetical questions. Many considerations were successfully addressed with multifaceted, proactive strategies, and CAB input. Findings have implications for recruitment science research and the validity of inferences regarding research preferences
Dementia · Disease · Engineering ethics · Psychiatry · Research ethics · Biomedical Ethics and Regulation · Engineering · Ethics in Clinical Research · Health Systems, Economic Evaluations, Quality of Life · Medicine · Psychology
What we say and what we do
Ethical and Methodological Issues in Interviewing Persons With Dementia
Memoing in qualitative research
False Hopes and Best Data
Towards capturing meaningful outcomes for people with dementia in psychosocial intervention research
How Should a Research Ethicist Combat False Beliefs and Therapeutic Misconception Risk in Biomedical Research
When Does Therapeutic Misconception Affect Surrogates' or Subjects' Decision Making about Whether to Participate in Dementia Research
How can they tell?' A qualitative study of the views of younger people about their dementia and dementia care services
Using thematic analysis in psychology
Research altruism as motivation for participation in community-centered environmental health research
Nonconscious and Contaminative Effects of Hypothetical Questions on Subsequent Decision Making
| Citations per year | 0.2 |
|---|---|
| Citation span | 2021 - 2021 (1) |
| Highly cited | No |