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Related Concept Videos

Ethical Dilemmas I01:17

Ethical Dilemmas I

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Ethical dilemmas in nursing are of utmost importance, as they often arise from the tension between adhering to core ethical principles and the practical realities of healthcare delivery. These dilemmas require nurses to navigate complex situations where competing ethical considerations pull them in different directions.
Let us explore some examples to understand the potentially complex moral decisions nurses face.
Take the case of caring for minors, particularly in areas related to reproductive...
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Guidelines for Writing Outcome01:11

Guidelines for Writing Outcome

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When developing expected outcomes for a patient care plan, the nurse should adhere to the following recommendations:
Patient outcomes reflect the patient's response to the goal rather than what the nurse aims to achieve. Terminology should be observable and measurable to avoid the reader's interpretation. The desired outcome should be realistic and achievable in the designated care timeframe. Expected outcomes should align with adjunctive therapies. The outcome should enhance care...
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Types of Reports II: Incident or Occurrence Report01:21

Types of Reports II: Incident or Occurrence Report

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An Incident or Occurrence Report in a healthcare setting is a crucial document used to record any unexpected occurrence that may or may not have affected a patient, employee, or visitor. Such reports are critical to improving patient safety and include all details leading up to and including the event.
Purposes:
In the healthcare industry, reports play a crucial role in documenting incidents within an agency. The primary objective of these reports is to ensure patient safety, uphold the...
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Nursing Evaluation01:15

Nursing Evaluation

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The evaluation stage signals the end of the nursing process. The nurse gathers evaluative data to assess whether or not the patient has attained the expected results. Whereas the nurse collects data in the nursing assessment to identify the patient's health concerns, the evaluation stage data determines if the indicated health issues are resolved. Evaluative data collection includes two sections: the data acquired to evaluate patient outcomes and the time criteria for data collection.
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Nursing Ethical Principles II01:27

Nursing Ethical Principles II

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Ethical principles are essential in guiding nurses to fulfill their responsibilities, focusing on the quality of nursing care and decision-making. These principles, including autonomy, beneficence, non-maleficence, justice, and fidelity, shape the ethical framework within healthcare settings.
Consider the following scenario, which illustrates how these principles are applied in the care of Mr. John, a fifty-year-old teacher diagnosed with metastatic liver cancer.
Initially, Mr. John's...
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Data Reporting and Recording01:24

Data Reporting and Recording

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Reporting and recording are crucial in data documentation. The timely, thorough, and accurate documentation of facts is essential when recording patient data. Failure to record findings during an assessment or interpretation of a problem will result in loss of information and make the patient document unreliable. The reader is left with general impressions if the information is not specific. A recording is documenting data of the individual's health information in a traceable, secure, and...
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Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care
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Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care

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A 360 Degree Qualitative Ethical Assessment of Reporting Patient Reported Outcomes.

Andrew P Huang1, Jennifer Corcoran1, Christine Zizzi2

  • 1Department of Neurology, University of Rochester Medical Center, Rochester, NY, USA.

Journal of Empirical Research on Human Research Ethics : JERHRE
|May 1, 2026
PubMed
Summary
This summary is machine-generated.

Returning patient-reported outcome (PRO) research results is complex. While tailored results are supported, privacy concerns and the need for clinically actionable data require further guideline development for Parkinson's disease research.

Keywords:
Return of resultsbioethicspatient-reported outcomesqualitative research

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Area of Science:

  • Neurology
  • Patient-Reported Outcomes
  • Qualitative Research

Background:

  • Existing guidelines for returning research results lack specifics for patient-reported outcomes (PROs).
  • Parkinson's disease research often collects valuable PRO data.
  • There is a need to understand stakeholder perspectives on returning PRO data.

Purpose of the Study:

  • To explore perceptions of returning PRO research data to patients with Parkinson's disease and their carepartners.
  • To identify challenges and facilitators for returning PRO research results.

Main Methods:

  • Conducted 30 semi-structured qualitative interviews with Parkinson's disease patients, carepartners, clinicians, and researchers.
  • Interviews were audio-recorded, transcribed, and analyzed thematically.
  • Data collection supplemented an ongoing palliative care trial for Parkinson's disease.

Main Results:

  • Stakeholders generally supported returning tailored PRO results when feasible.
  • Clinicians desired clinically actionable results, while researchers favored returning aggregate data.
  • Patients and carepartners raised privacy concerns; clinicians expressed mixed views on non-actionable results.
  • Researchers worried about potential impacts on research integrity when returning individual results during studies.

Conclusions:

  • Returning PRO research results requires careful consideration of patient privacy, clinical actionability, and research integrity.
  • Developing specific guidelines for returning PRO data is crucial for future research.
  • Further research is needed to establish optimal practices for returning PRO results in clinical research.