Participatory action research and hospice: a good fit

Area of Science:

• Healthcare Research
• Community-Based Participatory Research
• Palliative Care Studies

Background:

• Hospice care traditionally incorporates research, but current demands for accountability and outcome measurement necessitate expanded research involvement.
• Increasing pressure for evidence-based practice and program evaluation drives hospices toward more rigorous research methodologies.
• Traditional research methods may not fully capture the complexities of hospice care delivery and patient experience.

Purpose of the Study:

• To introduce and describe Participatory Action Research (PAR) as a valuable methodology for hospice research.
• To illustrate the application of a modified PAR approach within a hospice program serving individuals with AIDS.
• To advocate for the use of PAR to enhance the understanding, documentation, and evaluation of hospice services.

Main Methods:

• Description of Participatory Action Research (PAR) principles and practices.
• Case example of modified PAR implementation in an AIDS hospice setting.
• Emphasis on collaborative research involving hospice staff, volunteers, patients, and caregivers.

Main Results:

• PAR facilitates deeper insights into hospice service delivery by integrating frontline perspectives.
• The collaborative nature of PAR enhances the relevance and applicability of research findings.
• Involving stakeholders in research promotes ownership and facilitates the implementation of evidence-based improvements.

Conclusions:

• Participatory Action Research (PAR) is a powerful tool for hospice research, offering a collaborative and inclusive approach.
• Modified PAR can be effectively utilized in diverse hospice settings, including those serving specific populations like persons with AIDS.
• Maximizing input from hospice staff, volunteers, patients, and caregivers through PAR leads to more comprehensive and impactful research outcomes.