Index
Ethics and Integrity in Research with Older People and Service Users
ISBN: 978-1-80455-423-4, eISBN: 978-1-80455-422-7
ISSN: 2398-6018
Publication date: 24 November 2023
This content is currently only available as a PDF
Citation
(2023), "Index", O'Sullivan, R. (Ed.) Ethics and Integrity in Research with Older People and Service Users (Advances in Research Ethics and Integrity, Vol. 9), Emerald Publishing Limited, Leeds, pp. 201-205. https://doi.org/10.1108/S2398-601820230000009013
Publisher
:Emerald Publishing Limited
Copyright © 2024 Roger O’Sullivan. Published under exclusive licence by Emerald Publishing Limited
INDEX
Adult safeguarding focus groups
, 101
Advisory boards
diverse voices on
, 50
research
, 171, 178–179
sustaining
, 53–54
Aging PCOR Learning Collaborative
, 19
Alzheimer’s Society
, 59–60, 67
Alzheimer’s Society Northern Ireland (ASNI)
, 58, 66, 70
American Indian communities
aboriginal older people
, 159
barriers to
, 149–151
context and barriers to research
, 152–154
culturally different populations
, 149–151
cultural perspectives, critical differences in
, 150
distribution of biologic samples
, 158
ethics
, 154–155
Eugenics, medical practice research informed by
, 157–158
Havasupai Tribe
, 158
knowledge and awareness
, 160–162
members partner
, 159–160
methods and ethics
, 160–162
participatory research
, 160–162
peer educators
, 159
removal and erasure
, 156–157
training intervention, effectiveness of
, 159–160
unauthorized use and
, 158
western social science research
, 151–152
Anti-racism
, 18
Arnstein, Sherry
, 7–8
Awareness
, 65–66, 160, 162
Black, Indigenous and People of Colour (BIPOC)
, 9
BRAIN Involve
, 119
Bureau, conception of
, 43
Bureau Of Sages
, 42–43, 46, 54
Cameron, David
, 23
CD ROM
, 188–189
Centre accessibility
, 18
Cherry picking individuals
, 118
Citizen control
, 7, 9, 16
Citizen ethicists
, 130
competent
, 136–139
public contributors. See Public contributors
Cognitive impairment
, 24–25, 58–59, 84–85, 93–94, 118, 141
Coldness
, 186, 189
Co-leadership
, 16, 170
Co-led and co-designed research
, 171–173
Communications processes
, 12, 30–31, 34, 44, 49, 59–60, 64–65, 85, 90, 94, 97–98, 141, 159, 174, 178, 180, 186, 190
Community-based participatory research (CBPR)
, 116
Community members
, 13–14, 42–44, 114, 159–160, 162
Community Participatory Planning and Evaluation (CPPE)
, 177–178
Consent
, 22, 24–25, 41, 47, 58–59, 62–63, 86, 91–95, 98, 136, 157–158
Co-Principals
, 16
Co-production
, 131, 134, 138
Co-research
, 47, 59, 170–172
COVID-19
, 54–55, 88, 124, 130–131, 189
Cube framework
, 124
Cultural differences
, 150, 188–189
Databank
, 123
Data confidentiality
, 96–97
Data Protection Impact Assessment (DPIA)
, 96
Dementia caregiving, family conflict in
Alzheimer’s Society Northern Ireland (ASNI)
, 58, 66, 70
cause of conflict
, 65
family dynamics and conflict
, 63–66
family knowledge, stigma and denial
, 67–68
future recommendations
, 69–70
integrity
, 71
people/persons with dementia (PWD)
, 58–59, 65
public patient involvement (PPI)
, 58, 71, 73
research ethics committee (REC)
, 58–59
solutions to reduce/prevent family conflict
, 65
support services
, 69–70
systematic review of
, 62–63
user-focused research ethics
, 71
Dementia, older adults with
, 22–26
Democratic professionalism
, 130–131
Democratic societies
, 130–131
Department of Health (DOH)
, 84–85
Easy Read format
, 88, 92–93
Engaged research
co-led and co-designed research
, 171–173
participatory team science
, 176–178
team science
, 174–176
Equality Act
, 118
Erasure, removal and
, 156–157
Eugenics, medical practice research informed by
, 157–158
Eurocentric
, 148–149, 152–153, 160
European Union’s General Data Protection Regulations (GDPR)
, 89, 96–97
Exercises
, 42–44, 87
Geary, Carol
, 170, 176, 178–179
General Data Protection Regulations (GDPR)
, 89, 96–97
General practitioners (GPs)
, 70
Havasupai Tribe
, 158
Healthier Black Elders Center (HBEC)
, 13
Health Insurance Portability and Accountability Act (HIPAA)
, 41
Health Research Authority (HRA)
, 136–137
Human rights
, 41, 154–155
Indigenous populations
, 149–150, 161–162
Information sheets
, 72–73, 92–93, 98
Institute of Public Health (IPH)
, 84–85
Institutional Review Boards (IRBs)
, 41, 47
INVOLVE Framework
, 10, 18, 114–115
Joint Data Controller Agreement
, 97
Knowledge
, 9, 14–15, 32, 44, 46, 59, 67–68, 116, 132, 134–135, 139, 160, 162, 170, 175, 187
Ladder of Participation
, 7–8, 131
Land Grant universities
, 17–18
Lay Biosketch Template
, 45
LGBTQ1 community
, 12–13
Lived experience
, 170–173, 175–178
Logistics
, 86–87
Long-term services and supports (LTSS)
, 54–56
McGaffigan, Erin
, 10–11
Members partner
, 159–160
Mental Health Act (MHA)
, 119
Mental health research
citizen ethicists
, 134–136
public contributors
, 130, 132, 134
National Disability Authority, Ireland
, 89–90
National Health Service (NHS)
, 130–131
National Institute for Health and Care Excellence (NICE)
, 59–60
National Institute for Health Research (NIHR)
, 71–72, 114–115
Older Peoples External Residential Tool (OPERAT)
, 120
Ordway, Jeff
, 170
Participatory research
, 34, 43, 116, 159–160, 162, 174
Participatory team science
, 174, 176, 178, 180
Patient and public involvement (PPI)
, 24–26, 58, 71, 73, 114, 171–172
Patient Centered Outcomes Research and Comparative Effectiveness Research (PCOR/CER)
, 42
Patient-Centred Outcomes Research Institute (PCORI) Rubric
, 9–10, 42
Patient needs, ignorance of
, 187–188
Peer educators
, 159
People, approach and environment (PAE) attention framework
, 11–18
People factors
, 11–12, 15
People/persons with dementia (PWD)
, 58–59, 65
Personal reflection
cultural differences
, 188–189
patient needs, ignorance of
, 187–188
professional indifference
, 189–190
treatment, waiting for
, 186–187
Person-centred ethics
choosing and adapting
, 26–30
cognitive impairment
, 24–25
conversational style semi-structured interviewing techniques
, 27
dementia, older adults with
, 22–26
ethnographic studies
, 23, 31–32
guidelines and scrutiny of research
, 22–23
patient and public involvement (PPI)
, 24–26
qualitative methodologies
, 26–27
qualitative research
, 22
research
, 23–24, 26, 30, 33
theoretical and methodological choices
, 23–24
PPI. See Patient and public involvement (PPI)
Professional competency
, 85–86
Professional indifference
, 189–190
Profile of participants
, 86–87
PROSPERO
, 62
Public contributors
citizen ethicists. See Citizen ethicists
competent
, 136–139
co-production
, 134
democratic professionalism
, 130–131
democratic societies
, 130–131
essential
, 135–136
flourish
, 139–142
Ladder of Citizen Participation
, 131
National Health Service (NHS)
, 130–131
Public Involvement Impact Assessment Framework (PiiAF)
, 124
Recruitment
, 14, 24–25, 30, 41–42, 68, 89–90, 92, 138, 172
Research Design Service (RDS)
, 119
Research ethics committee (REC)
, 58–59, 89
Secure Anonymised Information Linkage (SAIL)
, 123
Semi-structured interviewing techniques
, 27
Stakeholder engagement
recognizing remaining barriers to
, 54
remaining barriers to
, 54
Steering Committee
, 15–16, 88, 178
Support services
, 46, 69–70, 95–96
Sustaining advisory boards
, 53–54
Synergy
, 185–186
Team science
, 170–171, 174–176, 178
Training
, 14–15, 44, 47, 61, 85–86, 122–123, 132, 159–160, 191
Trust
, 9, 16, 41–42, 50, 68–69, 90, 161
UK National Institute for Health Research
, 131
UK Standards For Public Involvement
, 117–118
BRAIN Involve
, 119
context
, 114–115
Cube framework
, 124
evaluating the impact
, 124
levels of participation
, 116–117
mutual benefits of
, 121–122
Older Peoples External Residential Tool (OPERAT)
, 120
PPI
, 114
Research Design Service (RDS)
, 119
selecting individuals for
, 118–121
training
, 123
User-focused research ethics
, 71
User involvement
application of
, 4
approach factors
, 15–17
centring people in
, 13
defining
, 4–6
environment factors
, 17–18
INVOLVE Framework
, 10
Ladder of Participation
, 7–8
Patient-Centred Outcomes Research Institute (PCORI) Rubric
, 9–10
people, approach and environment (PAE) attention framework
, 11–18
people factors
, 11–12, 15
research
, 6–8
Value of members, acknowledging
, 52
Virtually engaging
, 52
Virtual Senior Center (VSC)
, 46–47
Voice incorporating, older adult
advisory board, diverse voices on
, 50
barriers
, 46–47
building trust
, 50
bureau, conception of
, 43
bureau development, processes used in
, 43–46
Bureau Of Sages
, 42–43
Lay Biosketch Template
, 45
lessons learned
, 48–49
long-term services and supports (LTSS)
, 54–56
members, fostering authentic engagement with
, 51
practical insights
, 49–56
respect among members
, 50
stakeholder engagement, recognizing remaining barriers to
, 54
stakeholder engagement, remaining barriers to
, 54
sustaining advisory boards
, 53–54
value of members, acknowledging
, 52
virtually engaging
, 52
Vulnerable groups research
analysis and dissemination
, 88
approval process
, 89
avoiding harm to participants
, 95–97
capacity issues
, 93–95
consent
, 92–95
data confidentiality
, 96–97
ethical considerations
, 89–98
ethical framework
, 89
European Union’s General Data Protection Regulations (GDPR)
, 89, 96–97
focus group discussions
, 87–88
logistics
, 86–87
methodology
, 85–88
privacy risks
, 96–97
process and practicalities
, 84–88
profile of participants
, 86–87
recruitment
, 89–92
unexpected challenges
, 97–98
Western social science research
, 151–152
X-rays
, 188
- Prelims
- Section 1 ‘Views From the Researchers’
- Chapter 1 Theory and Practice of User-Involved Research
- Chapter 2 Navigating Person-Centred Ethics: A Sensory Ethnographic Study Involving Older People Living With Dementia and Family Carers
- Chapter 3 Incorporating Older Adult Voice Into Meaningful Research – ‘It's About Time’
- Chapter 4 Family Conflict in Dementia Caregiving: Maintaining Research Ethics and Integrity
- Chapter 5 Ethical Issues in Research With Vulnerable People: A Case Study
- Section 2 ‘Views From the Researched’
- Chapter 6 Involving Lay Members of the Public in Research – Reflections and Insights
- Chapter 7 Ethics, Integrity and Co-production in Mental Health Research
- Section 3 ‘Views From Those Who Fall In Between’
- Chapter 8 Research With Older Adults in American Indian Communities – Understanding Knowledge, Power and Practice
- Chapter 9 Engaged Research as Team Science Reflections From the ‘Researcher’ and the ‘Researched’
- Chapter 10 Trying the Patience of Patients: A Personal Reflection
- Appendix
- Further Reading and Resources
- Glossary
- Index