A Living Ethics Project to Address Psychological Distress in Chronic Illness: Process and Outcomes

Area of Science:

• Medical Ethics
• Patient-Centered Care
• Health Psychology

Background:

• Individuals with complex or rare chronic diseases face significant psychological distress.
• Healthcare providers (HCPs) are often ill-equipped to address the emotional and social dimensions of patient illness.

Purpose of the Study:

• To address neglected psychological distress in patients with chronic diseases.
• To co-develop and evaluate interventions for improving mental health support within healthcare settings.

Main Methods:

• A living ethics project structured as a five-phase living lab.
• Utilized semi-structured interviews and group interviews for problem identification, ideation, and evaluation.
• Employed a participatory methodology engaging stakeholders directly in the research process.

Main Results:

• Identified psychological distress as a key ethical issue.
• Co-developed an electronic appointment preparation form, a mental health resource directory for staff, and awareness posters.
• All interventions were positively evaluated, alongside the participatory research approach.

Conclusions:

• Directly engaging stakeholders in ethics research yields tangible, positive outcomes.
• Addressing significant moral issues collaboratively can lead to unexpected clinical benefits.
• Effective interventions can be developed even with limited resources and timeframes.