Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: A participatory co-design approach.

ABSTRACT:

Background

Primary malignant brain tumors (ie, brain cancer) impact the quality of life (QoL) for patients and care partners in disease-specific ways involving cognition and communication. Palliative care (PC) addresses patient/care partner QoL, but it is not known how PC may address the unique needs of brain cancer patients. The purpose of this project was to identify brain cancer PC research priorities using participatory co-design methods.

Methods

Participatory co-design included the formation of a longitudinal, collaborative advisory group, engagement frameworks, design-thinking processes, and social media-based engagement over a 1-year period. Community-identified brain cancer QoL needs and research priorities were mapped to proposed "essential elements" of brain cancer

SUBMITTER: Salmi L 

PROVIDER: S-EPMC11398937 | biostudies-literature | 2024 Oct

REPOSITORIES: biostudies-literature