Samenvatting

Rationale: In order to target rehabilitation needs of survivors of critical illness and their relatives timely and adequately, a thorough needs assessment is recommended when hospital discharge planning is initiated. In light of existing evidence on physical and psychological consequences of critical illness for both patient and family, it is as yet unclear if current hospital discharge procedures suffice to meet the needs of this group. Objectives: To explore hospital discharge experience and to identify perceived barriers and enablers for a positive transition experience from hospital to home or rehabilitation facility as perceived by survivors of critical illness and their families. Methods: We performed a grounded theory study with semi-structured interviews among a group of survivors of critical illness and their relatives (N=35) discharged from 16 hospitals across the Netherlands. Interviews were audio recorded and transcribed verbatim. Using constant comparative methods, initial and focused coding was applied to the data, which were further labeled into major and subcategories, ultimately leading to the identification of key concepts. Triangulation was applied through several reflexivity meetings at different stages of the study. Results: Twenty-two former ICU patients and 13 relatives were interviewed. The mean age was 53 (SD ± 11.2) and 60% were female. Median ICU and hospital length of stay were 14 days (IQR 9.75-24.5) and 35 days (IQR 21.75-57.25) respectively. Thematic analyses led to identification of seven key concepts, representing barriers and enablers to a positive transition experience. 'Existing in a fragmented reality', 'being overlooked' and 'feeling disqualified', were identified barriers and 'feeling empowered', 'encountering empathic and expert professionals', 'managing recovery expectations' and 'family engagement' were identified as enablers for a positive perceived transition experience. Conclusions: Findings of this study suggest that current hospital discharge practice for survivors of critical illness is driven by speed and efficiency, rather than by individual needs assessments, despite advocacies for patient- and family centered care. Discharge strategies should be customized to facilitate adequate and comprehensive assessment of aftercare needs, conducted at the right time and within the right context, encouraging empowerment and a positive perceived transition from hospital to home.