Upstreaming advance care planning: application of health behavior change theory to understand barriers and facilitators to talking about death and dying in the community

Abstract

ObjectivesAdvance care planning is a key preparatory step in ensuring high-quality palliative and end of life care, and should be considered as a process, beginning with community-level conversations among lay persons. There is, however, indication that death talk among community-dwelling adults is not occurring, and there is a dearth of research examining why this is the case. This study aims to provide the first examination of barriers and facilitators to talking about death and dying among community-dwelling adults in a UK region (Northern Ireland), and to provide a novel application of health behaviour change theory towards developing a theoretical understanding of the sources of this behaviour.MethodsQualitative analysis of responses (n=381 participants) to two open-ended questions within a cross-sectional mixed-methods online survey, with recruitment via social media of adults currently living in Northern Ireland. Reflexive thematic analysis was conducted on open text responses per question, with the barriers and facilitators mapped on to health behaviour change models.ResultsThe findings evidence a myriad of barriers and facilitators to engaging in death talk, with themes aligning to areas such as lack of acceptance of death in social contexts and fear of upsetting self or others, and a need to improve interpersonal communication skills for facilitating conversations and improve knowledge of the death system. A theoretical understanding of the determinants of death talk is presented with findings mapped across the majority of components of the COM-B Behaviour Change Model and the Theoretical Domains Framework. ConclusionsThis study contributes to a small but emergent research area examining barriers and facilitators to talking about death and dying. Findings from this study can be used to inform new public health programmes towards empowering adults to have these conversations with others in their community.