Research Agenda

Research Awards

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End of Life Care Data Resources - State Specific

End of Life Care Data Resources - By Organization

Hospice Research Basics:  A Manual for Hospice Agencies

Kimberly D. Acquaviva, Ph.D., M.S.W. Kathleen A. Egan, M.A., B.S., C.H.P.N.

(Click on the links below to access that report section)

1. What is research?
2. Why do research?
   • Assessing why you want to do research
   • Types of research
3. Getting involved in research
   • Ethics          
   • Roles
4. Establishing and maintaining systems
   • Role of committee
   • Forming an agency Review Committee    
   • Sample review forms       
   • Policies and procedures      
   • Research files, confidentiality and HIPAA
5. Evaluating proposed research
   • Assessing feasibility/practicality
   • Assessing impact on patients and families   
   • Assessing protection of human subjects     
   • Assessing public policy implications
   • Assessing impact on agency staff and volunteers
   • Assessing potential costs of research (time, resources, money) 
6. Working with researchers and students
   • Project design – hospice input    
   • Tracking systems
7. Community-academic partnerships
   • Identifying and forming partnerships     
   • Working with academic partners    
8. Working with an IRB
   • Description of the IRB       
   • Advantages and disadvantages of working with an IRB  
   • Deciding if IRB review is needed      
   • Preparing an IRB application
9. Resources

Acknowledgments

The Hospice Research manual represents a collaborative effort of the National Hospice and Palliative Care Organization, the National Council of Hospice and Palliative Professionals, researchers and hospice professionals. The value of the input the authors received cannot be overstated. The following people provided input, feedback and revision to the Hospice Research Manual during its development:

• Barbara Bouton, MA
• Linda Cain, PhD, RN
• Inge Corless, PhD
• Stephen Connor, PhD
• Jeanette Forbis, MSN, RN, APN
• Gary Gardia, MEd
• Pat Gibbons, RN, BSN
• Phyllis Grauer, BS, PharmD
• Frances Hoffman, MAT, MHA
• Anne King, R.N.
• Jean Kutner, MD
• Jill Lampley, MBA
• Susan McMillan, PhD
• Shareefa Sabur, MNO
• Lynn Zuellig, RN BSN