Samenvatting

BACKGROUND: The long-term consequences after an intensive care unit (ICU) hospitalization can be significant for both ICU survivors and their family members. Research in the past decades has shown that patients may develop new onset or worsened impairments in the physical, mental and cognitive domain and family members are known to experience psychological problems following ICU discharge. Furthermore, these impairments may affect daily functioning as well as family functioning. AIM: To gain insight into the way ICU survivors and their family members experience their health, three months after ICU discharge and to what extend this affects their roles and relationships within the family system. DESIGN: An exploratory, qualitative study with in-depth interviewing. SETTINGS: A large 38-bed ICU in a University Hospital in the Netherlands. PARTICIPANTS: Ten ICU-survivors and ten family members. METHODS: ICU nurses performed in-depth interviews with ICU-survivors and family members, three months following discharge. Interviews were audio recorded and transcribed verbatim. Analysis was performed iteratively in accordance with the steps of inductive content analysis. FINDINGS: Ten ICU-survivors and ten family members participated. We found four main themes: personal autonomy, narrative reconstruction, relationship dynamics and empathetic concern, which manifest different for ICU-survivors and family members, highlighting the distinct nature of their experiences. Physical recovery was a primary concern for ICU-survivors as well as family members, in order to regain personal autonomy. The different ICU-narratives of survivors and family members was hindering emotional recovery. Relationship dynamics occurred due to feelings of connection and disconnection intertwining, and empathetic concern was shaped by feelings of guilt and ambivalence. CONCLUSIONS: This study provides a deeper understanding of health perceptions of ICU-survivors and their family members, highlighting their contrasting experiences and the relational dynamics this can trigger. The findings of our study can be used to enhance the current approach of care after ICU discharge in any way, by actively involving the family system. Diagnostic, intervention, and outcome classification systems for nurses can be helpful in incorporating family-related aspects into the ICU context and aligning them with established family interventions, such as 'the family health conversation' and the ICU-diary. REGISTRATION: Not registered.