Translation, Adaptation, and Validation of the Swedish Serious Illness Conversation Guide

Abstract

Objective: To translate and adapt the Serious Illness Conversation Guide for use within the Swedish healthcare setting and examine the validity and acceptability of the Swedish Serious Illness Conversation Guide. Methods: Three rounds of cognitive interviews were conducted (T1-3); patients (T1 n = 11; T2 n = 10; T3 n = 8), family members (T1 n = 5; T2 n = 2; T3 n = 2), and healthcare professionals (T1 n = 6; T2 n = 6; T3 n = 5). The guide was iteratively adapted based on interview feedback, clinical experience, and the literature. The guide was tested on training days with physicians and nurses. Results: The Swedish Serious Illness Conversation Guide was found to be useful in supporting serious illness conversations. Clinicians reported that some questions were emotionally challenging. Explicit questions about prognosis and timing were excluded. Instead, the dual approach of “hoping for the best and preparing for the worst” was used to explore patients’ thoughts about the future. Conclusions: Patients, family members, and healthcare professionals found the Swedish Serious Illness Conversation Guide to be appropriate, sensitive, and responsive to their needs. The Swedish Serious Illness Conversation Guide may facilitate a more health-promoting approach to serious illness conversations. Further research is needed to understand the impact of these conversations on person-centered and goal-concordant care.