NATIONAL END-OF-LIFE DOULA ALLIANCE (NEDA)
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Research Best Practices

EOLDs who design and conduct any sort of research with clients or other EOLDS are bound by the fundamental principles of research ethics, outlined in the Belmont Report found here, (https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html) which include:
  1. Respect for persons - people will be treated as autonomous and be able to make decisions about whether or not they engage in research, and people with diminished autonomy will be protected;
  2. Beneficence - research should do no harm and researchers will strive to maximize benefits while minimizing risk for research participants;
  3. Justice - fairness (to access, recruitment, location) will be considered when designing any research study and participants should not be included merely because they are easy to access or are vulnerable and less likely to decline participating. Research conducted should have relevance to the population being studied.
 
Research Integrity Training: Researchers must have knowledge/training about how to conduct ethical research, such as that provided here (https://ori.hhs.gov/general-resources-0).
 
Conflict of Interest: Research should not be conducted with participants who are paying, or have paid, for services to the EOLD from whom the researcher is receiving funds (“dual role research conflict guidelines” - one cannot conduct research with someone who is also paying your wage and/or is vulnerable to care).
 
Informed Consent and IRB Approval: An informed consent process must be engaged for any persons participating in research that is intended for publication and/or wide dissemination (as opposed to internal quality control processes). Details of the specific informed consent process and a protocol of the study to be undertaken must be submitted to an Institutional Review Board (IRB) or a formally recognized ethics committee to determine that the basic principles of ethical research are maintained. No research should commence without specific approval by an IRB or ethics committee. IRBs are maintained by most universities, hospitals and healthcare systems, and can be accessed by the public at large.
 
Violations of these standards that are brought to the attention of the NEDA board are subject to NEDA Board review regarding consequences, including formal reporting to relevant IRB/ethics committee.

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NATIONAL END-OF-LIFE DOULA ALLIANCE (NEDA)
2423 SOUTH ORANGE AVE #115

ORLANDO, FL 32806

NEDA is a nonprofit 501c6 membership organization dedicated to supporting end-of-life doulas and the families they serve. Content on this website is for informational purposes only and is not offered as legal advice.
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Ferns are traditional symbols of humility and sincerity, both chief qualities of end-of-life doulas

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  • Home
  • About
    • Who We Are >
      • Our Mission
      • Scope of Practice
      • Code of Ethics >
        • Research Best Practices
      • The Doula Model of Care
    • Board of Directors
    • Annual Reports
    • 2021 - 2024 Strategic Plan
    • Anti-Racism and Inclusivity Statements
    • Q&A
  • Directories
    • Members by Name
    • Doulas by State A - M
    • Doulas by State N - Z
    • Doulas International
    • Trainer Directory
    • Friends of NEDA Directory
    • Corporations & Organizations Directory
    • Tips for Choosing an EOLD
    • Suggestions for Selecting an EOLD Training
  • Membership
    • Membership Applications
    • Refund Policy
    • Who Are Our Members?
    • Get Involved
  • Credentials
    • Certification
    • EOL Doula Core Competencies >
      • EOL Doula Proficiency Badge
      • NEDA EOLD Study Guide Outline
      • Selected Medicare CoPs
      • Sample Patient Bill of Rights
    • After-Death Care Educator Core Competencies >
      • NEDA ADCE Proficiency Badge
      • NEDA ADCE Study Guide Outline
      • NEDA ADCE Code of Ethics
  • Resources
    • Learn More About EOLDs
    • Doulas and After Death Care
    • Newsletters
    • Doulas in the News
    • EOLD Books
    • Children's Books
    • NEDA Tips and Guidelines >
      • Suggestions for Choosing an EOLD Training
      • Tips for Choosing an EOLD
      • Marketing EOLD 101
      • Embodied End-of-Life- Care
    • Tools of the Trade
  • Events
    • All Events
    • Doulapalooza 2025
    • Webinars
  • Contact