Good palliative care for people with severe mental illnesses: A Group Concept Mapping study

Abstract

Background:

High-quality palliative care is an international human right. Despite reduced life expectancy, people with severe mental illness face major disparities in access and quality.

Aim:

This study explored requirements for good palliative care for people with severe mental illness as perceived by stakeholders.

Design:

This Group Concept Mapping study used a mixed-methods participatory design with two phases: (1) an online brainstorming period (25 days), in which participants could respond several times to the focus prompt about good palliative care for patients with severe mental illness, and (2) individual sorting and rating of statements, followed by data analysis using multidimensional scaling and hierarchical cluster analysis.

Setting/Participants:

This study included 163 broadly defined stakeholders involved in severe mental illness care in the Netherlands, predominantly healthcare professionals, including client representatives and relatives.

Results:

Based on 98 unique statements derived from 515 responses, a concept map of seven clusters emerged: “Selfcare for healthcare professionals,” “Expertise,” “Communication in advance care planning (highest rated cluster),” “Care chain,” “Organization and policy making,” “Advance care planning” and “Patient centred care.” Statement 66, “Centralize the patient,” was considered most important.

Conclusions:

Good palliative care for people with severe mental illness is challenged by complexity, stigma and varied stakeholder demands. As basic requirements are often unmet in mental health care, individuals with severe mental illness are at increased risk of being deprived of their rights to receive quality palliative care. This study underscores the need to extend care recommendations and improve professional training, focusing on self-care and interdisciplinary education.