Author: Louise D'Eer
Date: 14-10-2024
Supervisors:
Prof. Joachim Cohen, End-of-Life Care Research Group, Vrije Universiteit Brussel
Prof. Kenneth Chambaere, End-of-Life Care Research Group, Ghent University
Prof. Tinne Smets, End-of-Life Care Research Group, Vrije Universiteit Brussel
Abstract
Civic engagement plays a central role in reframing responses to the challenges of serious illness, death and loss within public health approaches. This dissertation centres around the development and evaluation of neighbourhood civic engagement initiatives concerning serious illness, death and loss.
The first aim was to systematically describe existing civic engagement initiatives regarding serious illness, death and loss worldwide in terms of their context, activities, engagement strategies, impact and evaluation. To address the first aim, we conducted a systematic mixed-methods review of peer-reviewed English literature and additional grey literature.
The second aim was to identify development strategies for neighbourhood civic engagement initiatives regarding serious illness, death and loss, in terms of the extent, type and intensity of this neighbourhood participation, and the factors that are associated with it. In this regard, we conducted a cross-sectional survey study in the two selected neighbourhoods, before the development of the initiatives.
The third aim was to evaluate the development process of the neighbourhood civic engagement initiatives regarding serious illness, death and loss in the context of two Compassionate Cities. Firstly, we developed a detailed study protocol for the evaluation, balancing control and flexibility in the evaluation process. Secondly, we conducted a multimethod process evaluation encompassing semi-structured observations, interviews and group discussions with all the relevant parties in the development process. This data collection was conducted from December 2019 to September 2023.
The fourth aim was to reflect on the contemporary challenges, tensions and commonalities of the Compassionate Communities movement and to propose directions for future practice and research.
