Ethics and Integrity in Research with Older People and Service Users : Moving Beyond the Rhetoric / edited by Roger O'Sullivan.

Format:

Book

Contributor:

O'Sullivan, Roger, editor.

Series:

Advances in research ethics and integrity ; Volume 9.

Advances in Research Ethics and Integrity Series ; Volume 9

Language:

English

Subjects (All):

Research.

Physical Description:

1 online resource (241 pages)

Edition:

First edition.

Place of Publication:

Leeds, England : Emerald Publishing Limited, [2024]

Summary:

Setting out practical insights and guidance, as well as addressing theoretical and philosophical aspects, this volume includes contributions from 'researchers', 'the researched' and 'those in between' on topics including dementia, family carers, and mental health with the common goal of producing high quality 'user' relevant research.

Contents:

Cover

Ethics and Integrity in Research with Older People and Service Users

ADVANCES IN RESEARCH ETHICS AND INTEGRITY

Editorial Advisory Board

ETHICS AND INTEGRITY IN RESEARCH WITH OLDER PEOPLE AND SERVICE USERS: MOVING BEYOND THE RHETORIC

Copyright

Dedication

Quote Page

Contents

Series Preface

List of Figures and Tables

List of Abbreviations

About the Editor

About the Contributors

Foreword

Preface

1. 'VIEWS FROM THE RESEARCHERS'

1. Theory and Practice of User-Involved Research

Abstract

Introduction

Defining User Involvement

Theoretical Underpinnings of User Involvement in Research

Arnstein's Ladder of Participation

User Involvement Frameworks

The Patient-Centred Outcomes Research Institute (PCORI) Rubric

The INVOLVE Framework

The People, Approach and Environment (PAE) Attention Framework

Applying the PAE Attention Framework to User Involvement in Research

People Factors: The Successful Researcher

People Factors: Those Successfully Involved

Approach Factors: No One Size Fits All

Environment Factors

Conclusion

References

2. Navigating Person-Centred Ethics: A Sensory Ethnographic Study Involving Older People Living With Dementia and Family Carers

Employing a Research Design, Including Theoretical and Methodological Choices, Which Support Person-Centred Ethics

Patient and Public Involvement (PPI) in Research Development

Choosing and Adapting Person-Centred Research Practices and Methods

Research Relationships

3. Incorporating Older Adult Voice Into Meaningful Research - 'It's About Time'

Background

The Bureau of Sages

The Conception of the Bureau

Processes Used in Development of the Bureau

Barriers

Lessons Learned.

Practical Insights

The Future of Research Advisory Boards in Long-Term Services and Supports (LTSS)

4. Family Conflict in Dementia Caregiving: Maintaining Research Ethics and Integrity

Dementia and Family Units

Systematic Review of Family-Focused Interventions in Dementia Care

Scoping Review - Understanding Family Dynamics and Conflict in the Context of Caring for Someone With Dementia

Qualitative Interviews With ASNI Staff and Volunteers

Theme 1: Family Knowledge, Stigma and Denial

Theme 2: Family Dynamics and Conflict

Theme 3: Available Support, Barriers to Accessing Support Services and Future Recommendations

User-Focused Research Ethics and Integrity

Next Steps - PPI

Systematic Review Search

Scoping Review

5. Ethical Issues in Research With Vulnerable People: A Case Study

Research Process and Practicalities

Methodology

Profile of Participants

Logistics

Focus Group Discussions

Analysis and Dissemination

Ethical Considerations

Ethical Framework and Approval Process

Recruitment

Consent

Capacity Issues

Avoiding Harm to Participants

Privacy Risks and Data Confidentiality

Unexpected Challenges

Conclusions

Adult Safeguarding Focus Groups

Participant Consent Form Easy Read

2. 'VIEWS FROM THE RESEARCHED'

6. Involving Lay Members of the Public in Research - Reflections and Insights

Why We Became Involved in PUBLIC INVOLVEMENT (PI)

Context

The Need for PI

Levels of Participation

The UK Standards for Public Involvement

Selecting Individuals for PI

The Mutual Benefits of PI

Evaluating the Impact of PI

References.

7. Ethics, Integrity and Co-production in Mental Health Research

Who Are Public Contributors?

What Do Public Contributors Do?

Why Reframe Public Contributors as Citizen Ethicists?

Citizen Ethicists Are Essential

Are Citizen Ethicists Competent?

Enable Citizen Ethicists to Flourish

3. 'VIEWS FROM THOSE WHO FALL IN BETWEEN'

8. Research With Older Adults in American Indian1 Communities - Understanding Knowledge, Power and Practice

Barriers to Valid Research About Culturally Different Populations

Western Social Science Research

Context and Barriers to Research About American Indians

American Indian History: Ethics, Removal and Erasure

Ethics

Removal and Erasure

Research Gone Wrong

Medical Practice Research Informed by Eugenics

Unauthorized Use and Distribution of Biologic Samples Taken From the Havasupai Tribe

Examples of Success

Aboriginal Older People Become Peer Educators

American Indian Community Members Partner in Research to Evaluate Effectiveness of a Training Intervention

Community-Based, Participatory Research: A Way Forward for American Indian Research: Knowledge and Awareness, Methods and E ...

9. Engaged Research as Team Science Reflections From the 'Researcher' and the 'Researched'

What Are Co-Led and Co-Designed Research?

What Is Team Science, and How Does It Relate to Engaged Research?

Participatory Team Science Exemplar

Discussion

10. Trying the Patience of Patients: A Personal Reflection

Waiting for Treatment

Ignorance of Patient Needs

Cultural Differences

Professional Indifference

Postscript

Appendix.

Further Reading and Resources

Glossary*

Index.

Notes:

Description based on print version record.

Other Format:

Print version: O'Sullivan, Roger Ethics and Integrity in Research with Older People and Service Users

ISBN:

9781804554227

1-80455-422-7