| dc.description.abstract | Background: Advance care planning (ACP) is a process aiming to elicit, communicate, and document
future care wishes, providing mechanisms through which individual preferences can be supported.
Poor and fragmented stakeholders’ engagement in ACP poses challenges internationally, preventing
maximisation of potential benefits. Theory-based and innovative strategies are required to facilitate
stakeholders’ engagement. Aim: The aim of this project was to generate evidence to inform the
development of an intervention for increasing stakeholders’ engagement in ACP for middle-aged and
older community-dwellers (≥ 50 years old) in Ireland. Method: This mixed-methods study achieved its
aim through three sequential studies: a hybrid mixed-research systematic review (Study 1), a
secondary analysis of longitudinal population data (Study 2), and a collective intelligence workshop
with key stakeholders (Study 3). Study 1 synthesised international evidence on the barriers and
facilitators to stakeholders’ ACP engagement and mapped the findings across the Capability,
Opportunity, and Motivation dimensions of behaviour (COM-B model). Study 2 explored ACP uptake
among community-dwellers, via secondary data analysis, and identified factors associated with ACP
engagement. Study 3 explored barriers to ACP engagement, options for overcoming those barriers,
and the end-users’ needs. Findings were integrated and mapped across the intervention options and
policy categories of the Behaviour Change Wheel. Findings: Study 1 provided a comprehensive
behavioural diagnosis in relation to factors influencing stakeholders’ engagement in ACP activities for
middle-aged and older community-dwellers, with most influencing factors falling into the categories
of opportunity (connectedness, service provision, resources, sociodemographic characteristics, and
macro-level variables) and motivation (psychological factors, metapreferences, temporality,
experience). Capability included dimensions of literacy. Study 2 showed that overall engagement in
ACP behaviours in Ireland is comparatively low, although higher at wave 6 (34.9%, n=1425) when
compared to wave 4 (26.5%, n=1159). The prevalence was higher at end-of-life (57.1%, n=169). The
most frequently reported ACP behaviours were conversations with trusted others (24% (n=1048) at
wave 4, 29.4% (n=1200) at wave 6, and 48% (n=142) at end-of-life) and the appointment of a surrogate
decision-maker (43.5%, n=128). Engagement in conversations with trusted others was positively
associated with increasing age, being female, experience of pain, making a will. It was negatively
associated with being single and perceiving religion as important. Study 3 identified and grouped
barriers to ACP into seven categories, including: Psychological; Resources and Supports; ACP Process
and Methods; ACP Literacy; Interpersonal and Interprofessional; Cultural and Societal; and Servicerelated. The options for overcoming these barriers included: Changing Perceptions of ACP and
Increasing Psychological Readiness; Developing High-Quality Resources, Support Systems, and
Infrastructure; Using Creative Methods and Strategies to Facilitate Stakeholders’ Engagement in ACP;
Increasing ACP Literacy through Education and ACP Campaigns; Facilitating Timely, Focused, and
Meaningful Interaction between Stakeholders; Promoting Cultural and Societal Transformation; and
Co-designing a Needs and Values-based Service. The systematic integration of findings (studies 1-3)
resulted in identification of five clusters of integrated findings (meta-themes), which describe the
overarching patterns of ACP engagement. It facilitated specification of the dimensions of the problem
and a possible solution. Conclusion: This is the first study to explore comprehensive, theory-based
underpinnings of ACP, the findings of which inform the key characteristics of future interventions.
Priorities for future research, practice, policy and informed efforts towards the design and coproduction of ACP intervention are discussed. | en |
