Samskapad implementering av proaktiva samtal inför vård och omsorg i livets sista tid på särskilt boende för äldre

<p dir="ltr"><b>Background</b>: Older adults with extensive care needs often spend their final years, months, and days in residential care facilities. In this context, both family members and care staff play a central role in supporting residents’ well-being. Although residential care facilities are responsible for a substantial proportion of palliative care in Sweden, structured conversations about values and preferences related to end-of-life care remain uncommon, and many residents lack documented wishes for future care. Staff working closest to residents are in a unique position to initiate such conversations, yet research shows that they often lack training, support, and confidence, making discussions about future end-of-life care challenging. This limits the opportunities for person-centred care and increases the risk that care is not aligned with the individual’s values and preferences. </p><p dir="ltr"><b>Aim</b>: The overall aim of this thesis was to implement, explore, and evaluate the co-created implementation of proactive conversations about care and support at the end-of-life in residential care facilities for older adults. </p><p dir="ltr"><b>Methods</b>: The thesis employs an overarching participatory action research approach and includes four sub-studies. Workshop series were conducted to strengthen staff competence in carrying out structured, proactive end-of-life conversations, while managers participated in parallel workshops focused on the implementation process. The DöBra cards were used both as a tool for learning and reflection during the workshops and as a conversation tool in proactive endof-life conversations with residents and family members. </p><p dir="ltr"><b>Findings</b>: Three drivers of action were constructed: competence to perform proactive end-of-life conversations, motivation to perform proactive end-of-life conversations, and opportunities to accomplish change. These drivers were interpreted as central to staff engagement in the implementation of proactive end-of-life conversations (Study I). Residents and family members described outputs from conversations as open communication, knowledge exchange, and improved relationships. Even individuals with cognitive impairment were able to participate meaningfully (Study II). The Swedish version of the Death Literacy Index (DLI-S) demonstrated good psychometric properties (Study III). Although no positive changes in Death literacy levels were detected over time using the DLI-S, qualitative analyses revealed several forms of impact, corresponding to the four dimensions of Death literacy, particularly experiential learning and social action (Study IV). </p><p dir="ltr"><b>Conclusions</b>: Proactive end-of-life conversations can be successfully implemented in residential care facilities for older people and seem to be experienced as meaningful by residents, family members, and staff. Using the conversation tool DöBra cards as a conversation tool may promote residents and family members to articulate values and priorities that otherwise remain unheard, thereby potentially promoting person‑centred end‑of‑life care. Proactive end-of-life conversations thereby offer a valuable complement to communication in settings where relationships and continuity are central to residents. The knowledge and skills needed to implement proactive conversations can be enhanced through making opportunities for experiential learning based on action and structured reflection. The thesis also illustrates the value of combining multiple methods when evaluating participatory action research in complex care environments. Several aspects that challenge controlled effect evaluation, such as purposeful recruitment, local ownership, and flexible, adaptive processes, appeared to contribute to sustainable change, suggesting that aspects that complicated effect measurement may still be crucial for achieving long‑term impact. </p><p dir="ltr">Finally, applying a public health perspective and the concept of Death literacy may offer valuable insights into the social and relational dimensions of end‑of‑life care in residential care facilities.</p><h3 dir="ltr">List of scientific papers</h3><p dir="ltr">I. <b>Mikaelsson, Å.</b>, Eriksson, L.E., Stenfors, T., Goliath, I. Drivers for action during implementation of proactive end-of-life conversations in care facilities for older people [Manuscript]</p><p dir="ltr">II. <b>Mikaelsson, Å.</b>, Eriksson, L. E., Stenfors, T., & Goliath, I. (2025). Proactive end-of-life conversations in residential care homes: a qualitative interview study exploring residents’ and family members’ experiences. BMC Geriatrics, 25(1), Article 279. <a href="https://doi.org/10.1186/s12877-025-05916-7" rel="noreferrer" target="_blank">https://doi.org/10.1186/s12877-025-05916-7</a> </p><p dir="ltr">III. Johansson, T., <b>Olsson, Å.</b>, Tishelman, C., Noonan, K., Leonard, R., Eriksson, L. E., Goliath, I., & Cohen, J. (2023). Validation of a culturally adapted Swedish-language version of the Death Literacy Index. PloS One, 18(11), e0295141. <a href="https://doi.org/10.1371/journal.pone.0295141" rel="noreferrer" target="_blank">https://doi.org/10.1371/journal.pone.0295141</a> </p><p dir="ltr">IV. <b>Mikaelsson, Å</b>., Tishelman, C., Noonan, K., Kowalski, L., Kleijberg, M., Johansson, T., Stenfors, T., Eriksson, L.E., Goliath, I. Investigating effect versus impact in a participatory action research project: Building End-of-Life communication competence in residential care facilities for older people [Submitted]</p>