It takes two to tango: carers' reflections on their participation and the participation of people with dementia in the James Lind Alliance process.

ABSTRACT:

Background

Worldwide, patient and public involvement (PPI) in health research has grown steadily in recent decades. The James Lind Alliance (JLA) is one approach to PPI that brings patients, carers and clinicians together to identify priorities for future research in a Priority Setting Partnership (PSP). Our study aim was to describe the reflections of informal carers of people with dementia on the possibility of participating in the JLA's PSP process, for both themselves and the recipients of their care. In addition, we wanted to explore barriers to and facilitators of their participation.

Methods

We conducted four focus groups with 36 carers of people with dementia. Thematic analysis was applied to analyse the data.

Results

An overarching theme emerged from the part

SUBMITTER: Nygaard A 

PROVIDER: S-EPMC7227228 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature