Front Cover

Behavioral Intervention Research in Hospice and Palliative Care

Copyright Page

Dedication

Contents

The Hospice Caregiving Research Network

Expert Contributors Bios

Foreword

Acknowledgments

1 A Roadmap to Behavioral Intervention Research in Hospice and Palliative Care

1.1 Introduction

1.2 Main Concepts

1.2.1 Defining Behavioral Interventions in Hospice and Palliative Care

1.2.2 The Importance of Research on Behavioral Interventions in Hospice and Palliative Care

1.2.3 The PISCES and ACCESS Interventions

1.2.3.1 PISCES

1.2.3.2 ACCESS

1.3 A Model of Behavioral Intervention Research in Hospice and Palliative Care

1.3.1 Keystones

1.3.1.1 Engage Stakeholders

1.3.1.2 Consider Cultural Congruence

1.3.1.3 Focus on Ethical Conduct of Research

1.3.1.4 Incorporate Interdisciplinary Perspectives

1.4 Book Overview

References

2 The Foundations of Behavioral Intervention Research in Hospice and Palliative Care

2.1 Introduction

2.2 A Brief History of Hospice and Palliative Care

2.3 Research in Hospice and Palliative Care: Past, Present, and Future

2.4 Team Science: An Interdisciplinary Approach to Research

2.4.1 Identifying and Addressing Barriers to Team Science

References

3 Defining and Analyzing the Problem

3.1 Introduction

3.1.1 Identifying Problems in Practice

3.1.2 Identifying Problems in Reports

3.1.3 Identifying Problems in the Literature

3.2 Synthesizing the Evidence

3.2.1 Narrative Review

3.2.2 Systematic Review

3.2.3 Meta-analysis

3.3 Considerations Specific to Hospice and Palliative Care Reviews

3.4 Keystone Implications

References

4 Designing an Intervention

4.1 Introduction

4.2 Theory as the Foundation for Interventions

4.2.1 Purpose of Theory

4.2.2 Theory Versus Conceptual Model

4.3 Choosing an Intervention

4.3.1 Replicating an Intervention in the Same Setting

4.3.2 Modifying an Intervention from a Different Setting

4.3.3 Developing a New Intervention

4.4 Engaging Stakeholders in Intervention Design

4.5 Intervention Components

4.6 Hospice and Palliative Care Settings

4.6.1 Palliative Care

4.6.2 Hospice Care

4.6.3 Outpatient Clinics

4.6.4 Emergency Room

4.6.5 Intensive Care Unit (ICUs)

4.6.6 Long-Term Care

4.7 Specific Considerations for Intervention Design

4.7.1 Intervention Site Considerations

4.7.2 Intervention Recruitment and Retention Considerations in Design

4.7.3 Role of Interventionist

4.7.4 Intervention Design Considerations Related to Testing

4.7.5 Institutional Review Boards (IRBs) Issues with Design

4.8 Developing Intervention Protocols

4.9 Importance of Preliminary Work

4.10 Ethical and Cultural Considerations of Intervention Design

4.10.1 Cultural Competency

4.10.2 Cultural Considerations in Interventions

4.10.3 Ethical Issues of Intervention Research in Behavioral Intervention Research

4.11 Keystone Implications

References

5 Planning, Pilot-Testing, and Refining the Intervention

5.1 Introduction

5.2 Considerations for a Pilot Test

5.3 Essential Resources

5.3.1 Hiring

5.3.2 Models of Staffing

5.3.3 Training

5.4 Treatment Fidelity

5.5 Data Collection and Organization

5.6 Data and Safety Monitoring Plan

5.7 Data Integrity

5.8 Keystone Implications

References

6 Conducting a Clinical Trial

6.1 Introduction

6.2 Study Design

6.2.1 Pragmatic Clinical Trials

6.2.1.1 Patient Preference Trials

6.3 Recruitment and Retention

6.4 Special Methodological Considerations

6.4.1 The Value of Mixed Methods in Hospice and Palliative Care Research

6.4.2 Intention to Treat (ITT)

6.4.3 Use of Technology

6.5 Economic Analysis

6.6 Keystone Implications

References

7 Disseminating Findings and Translating the Intervention

7.1 Introduction

7.2 Dissemination of Knowledge

7.2.1 Publication of Intervention Research

7.2.2 Authorship

7.2.3 Publication of Clinical Trials

7.2.4 Choosing a Journal

7.2.5 Impact Factors

7.2.6 Open-Access Journals

7.2.7 Additional Methods of Dissemination

7.2.7.1 Social Media

7.2.7.2 Professional Conferences

7.3 Translation into Practice

7.3.1 Definitions

7.3.2 Challenges for Translation

7.3.3 Engaging Stakeholders for Translation

7.4 Linking Research to Practice and Policy

7.4.1 Implementation Theories, Models, and Frameworks

7.4.2 Research, Policy, and Translation

7.5 Keystone Implications

References

Appendix

Appendix A.1 Sample Authorship Policy

First Author

Second Author

Corresponding Author

Appendix A.2 Literature Review Protocol Template

What Is the Purpose of the Review?

Protocol Components (Systematic Reviews and Meta-analyses Only)

Appendix A.3 Sample Data Extraction Template

Meta-analysis Only

Study Outcome Statistics

Intervention Statistics (Intervention Group Only)

Appendix A.4 Article Quality Assessment Template

Part 1: Quantitative Studies

Part 2: Qualitative Studies

Part 3: Multiple Methods Studies

Part 4: Mixed Methods Studies

Appendix A.5 Study Protocol Checklist

Appendix A.6 Treatment Fidelity Protocol for the PISCES study

Assessing Fidelity in Study Design

Assessing Fidelity in Study Implementation

Assessing Fidelity in Study Documentation and Outcomes Assessment

Appendix A.7 Example of an Intervention Monitoring Tool for the PISCES study

Documentation of Fidelity Elements

Materials Needed for This Visit

Appendix A.8 Detailed Data and Safety Monitoring Plan for the PISCES Study

Monitoring Entity

Procedures for Safety, Risk, and Confidentiality

Procedures for Identifying, Reviewing, and Reporting Adverse Events

Multisite Monitoring and Compliance

Assessment of External Factors

Interim Analysis

Protocols for Responding to Abuse, Neglect, Exploitation, Suicide Risk, and Other Mental Health Concerns

Protocol for Responding to Abuse, Neglect, or Exploitation

Indicators of Abuse and Neglect

Protocol for Responding to Suicidal Risk

Protocol for Responding to Distress and Other Mental Health Concerns

Reference

List of Abbreviations

Index

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