A 'new public health' perspective on building competence for end-of-life care and communication : how death literacy can be developed and measured

Abstract

Background: Due to aging populations and prolonged dying trajectories in many high-income countries including Sweden, more people will need extended periods of care and support at the end-of-life (EOL). In light of these changes, EOL care provision is increasingly recognized as a public health issue to be addressed not only within but also beyond the health care system. However, shifting EOL care provision requires that caregivers in other settings, such as elder care and home environments, perceive themselves to be sufficiently competent and prepared to handle various aspects of EOL care. Such competence can be denoted as death literacy. Building on the field of health promotion, interventions applying new public health approaches have been prominent in efforts to strengthen capacity to engage with dying, death, and loss in wider society. However, there is limited research about feasible means for fostering EOL competence-building and evaluating it in practice.

Aim: The overall aims of this thesis are to explore how to support development of EOL competence, referred to as death literacy (Studies I, II, IV), and assess one means of conceptualizing and measuring EOL competence (Studies III-IV).

Methods: These aims were addressed in four empirical studies deriving from two large data collections. Studies I and II used a multi-case participatory action research design to explore competence for EOL communication and the feasibility of a card-based tool designed to support reflection and conversation about EOL values and preferences, the DöBra cards, in elder care settings. Study I explored changes in elder care staff’s reasoning about EOL communication throughout five series of workshops (n=20) designed to promote EOL communication competence, using longitudinal qualitative analysis. Study II built on follow-up interviews (n=6) with participants from Study I and meetings (n=8) with staff from four additional services. Inductive qualitative content analysis was used to explore staff’s perspective on the usability of the DöBra cards to discuss EOL care with residents and relatives in residential care homes.

Studies III and IV were based on data collected during a multistep process to translate and validate the Death Literacy Index (DLI) in a Swedish context. The DLI is a 29-item questionnaire measuring six dimensions of EOL competence developed in but not yet tested outside Australia. The aim of Study III was to develop a culturally adapted Swedish-language version of the DLI (DLI-S) and assess its validity as a measurement of EOL competence in Sweden using mixed methods. Expert review (n=10) and cognitive interviews (n=10) were used to determine content and response process validity. A psychometric evaluation of DLI-S data from a cross-sectional survey (n=503) was conducted to assess internal structure validity. The aim of Study IV was to explore factors associated with death literacy, in a nonexperimental study using data collected in the online DLI-S survey. The survey data were analyzed using linear regression models to investigate associations between death literacy and numerous sociodemographic, health-related, and experiential factors.

Findings: Reflection, involving both introspection and extrospection, about past experiences and own feelings or assumptions about the EOL was found to be a central component for supporting death literacy development (Studies I-IV). The DöBra cards showed promise as an educational tool that, promoted reflection and knowledge exchange among staff (I) and as a conversation tool that helped staff facilitate proactive conversations about EOL values and preferences with residents and relatives in elder care practice (I-II). The multidimensional conceptualization of death literacy was supported in the Swedish context (III, IV). Death literacy in the Swedish sample was found to be primarily associated with direct experiences of supporting dying and bereaved persons (IV). The overall validity of the DLI-S was supported by evidence based on content, response processes, and internal structure. However, the scale relating to community support for EOL care showed poorer performance than the other scales, indicating contextual differences between Sweden and Australia, particularly regarding the role and organization of the health and social care systems (III).

Conclusion: The thesis contributes to the understanding of how EOL-related competence can be supported and evaluated, which is of significance for competence-building initiatives in both research and practice. The findings suggest that death literacy primarily develops from experiential knowledge and can be fostered through a process of reflection, specifically introspection and extrospection of own and others’ EOL experiences, and mutual knowledge exchange. The DöBra cards were found to be useful to support death literacy development and for staff to facilitate proactive EOL conversations. The thesis also contributes with new knowledge about the DLI as a viable instrument for conceptualizing and measuring EOL competence that is not context- or profession-specific in a Swedish context.