Patient and family experience 2 years after necrotizing soft-tissue infection: A longitudinal qualitative investigation

Abstract

Aims: The study aims were to provide a comprehensive description of the short- and long-term experience of necrotizing soft-tissue infections from the patient and family perspective. Further, to describe how unmet needs related to diagnosis, treatment and rehabilitation are experienced. And finally, to present patient and family recommendations for improvements.

Design: The study had a longitudinal qualitative multi-centre two-country design.

Methods: Qualitative content analysis was applied to 87 semi-structured interviews involving 50 participants from Denmark and Sweden. In most interviews, patient and family were interviewed separately. Data were collected in 2015-2018. This is the fifth and final paper reporting the study.

Findings: After initial inductive coding, we constructed a matrix of four timepoints (pre-admission, acute admission, after 6 months and after 2 years) describing physical, psychological and social responses and recommendations for improvement. We analysed deductively according to timepoints and predefined categories describing patient and family responses to life with necrotizing soft-tissue infections. The study suggested that physical recovery was obtained before psychological recovery. The aftermath of job loss and lacking social services amplified the burden. Patients still recovering experienced lack of understanding from family, friends and professionals that failed to recognize the complexity of their suffering.

Conclusions: Half of the patients in our study reported making a full recovery while the remaining described issues still unresolved 2 years after intensive care unit discharge. Predisposing factors and symptoms align with other studies of critical illness. During the acute stage, patients receive state-of-the art treatment and care, but as time passes, rehabilitation becomes less available and less patient-centred.

Impact: The study will increase nurses' understanding of patient and family suffering and complexity of long-term survival of necrotizing soft-tissue infections.

Patient or public contribution: From the planning stage of the study, we collaborated with a necrotizing soft-tissue infection survivor.

Keywords: critical care; illness burden; necrotizing fasciitis; nursing; patient perspective; qualitative research.