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

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.

Patient experience of necrotising soft-tissue infection from diagnosis to six months after intensive care unit stay: A qualitative content analysis.

INTRODUCTION: Necrotizing soft tissue infection (NSTI) is a severe, life-threatening condition requiring immediate diagnosis and treatment to avoid widespread tissue destruction and death. Current research seeks to explain the complex interaction between patient and disease agent, whereas only few studies have addressed the patient perspective. OBJECTIVE: The present study aimed to describe the patient experience of NSTI in the first six months after diagnosis. METHODS: The study had a qualitative design with patient involvement. We interviewed 27 NSTI survivors at six months after diagnosis and applied content analysis to capture their experiences. Patients were recruited from two referral centers in Sweden and one in Denmark. FINDINGS: We identified three categories representing chronological stages of the illness trajectory depicting pivotal patient experiences: regaining awareness in the intensive care unit, transitioning to the ward, and returning home to normal life. Fear of infection or reinfection permeated all stages of the trajectory. Each stage was characterized by ambivalence: at first the relief of being alive and distress of serious illness, then the relief of independence and distress of abandonment, and finally the relief of being home and distress of still being dependent on others. CONCLUSION: Fear of infection and reinfection during and after hospitalization characterized lives of NSTI survivors and their family. This fear was potentially debilitating in daily life, working life and social life. Healthcare professionals need to be aware of these modifiable factors to help alleviate the concerns of patient and family throughout the illness trajectory.

Signs, symptoms and diagnosis of necrotizing fasciitis experienced by survivors and family: a qualitative Nordic multi-center study.

BACKGROUND: Necrotizing soft tissue infection is the most serious of all soft tissue infections. The patient's life is dependent on prompt diagnosis and aggressive treatment. Diagnostic delays are related to increased morbidity and mortality, and the risk of under- or missed diagnosis is high due to the rarity of the condition. There is a paucity of knowledge regarding early indications of disease. The aim of the study has thus been to explore patients' and families' experiences of early signs and symptoms and to describe their initial contact with the healthcare system. METHODS: A qualitative explorative design was used to gain more knowledge about the experience of early signs and symptoms. Fifty-three participants from three study sites were interviewed. The framework method was used for data analysis. RESULTS: Most of the participants experienced treatment delay and contacted healthcare several times before receiving correct treatment. The experience of illness varied among the participants depending on the duration of antecedent signs and symptoms. Other important findings included the description of three stages of early disease progression with increase in symptom intensity. Pain experienced in necrotizing soft tissue infections is particularly excruciating and unresponsive to pain medication. Other common symptoms were dyspnea, shivering, muscle weakness, gastrointestinal problems, anxiety, and fear. CONCLUSION: Our study adds to the understanding of the lived experience of NSTI by providing in-depth description of antecedent signs and symptoms precipitating NSTI-diagnosis. We have described diagnostic delay as patient-related, primary care related, or hospital related and recommend that patient and family narratives should be considered when diagnosing NSTI to decrease diagnostic delay.

Experiences of family caregivers the first six months after patient diagnosis of necrotising soft tissue infection: A thematic analysis.

BACKGROUND: Necrotising soft tissue infection, or necrotising fasciitis, is a rapidly progressing disease requiring immediate diagnosis and treatment consisting of antimicrobial therapy, hyperbaric oxygen, debridement surgery and treatment in the intensive care unit. The harrowing illness trajectory affects the family caregivers potentially producing long-term psychological issues. OBJECTIVES: We aimed to explore the experiences and coping strategies of family caregivers during the first six months after patient diagnosis of necrotising soft tissue infection. METHODS: Our study had a prospective, explorative, qualitative design using semi-structured interviews and thematic analysis to understand necrotising soft tissue infection as an intrinsic and instrumental case. Family caregivers (n = 25) were recruited at three university hospitals in Denmark and Sweden. FINDINGS: We identified three chronological themes describing issues of importance to the family caregivers. In the intensive care unit: Coping with illness and intensive care; In the ward: Coping with injury and post-intensive care and At home: Coping with recovery and new home life. CONCLUSION: Challenges facing family caregivers of necrotising soft tissue infections survivors are still under-recognised. Healthcare professionals need to ensure that families and stakeholders throughout the patient trajectory have access to and co-create timely information and care plans to bridge the knowledge gap across care environments and to relieve family responsibility.

Images of suffering depicted in diaries of family caregivers in the acute stage of necrotising soft tissue infection: A content analysis.

OBJECTIVES: Severe necrotising soft tissue infections (NSTI) are rare life threatening rapidly progressing bacterial infections requiring immediate diagnosis and treatment. The aim of the study was to explore the experience of family caregivers of patients with necrotising soft tissue infection during the acute stage of disease. METHODS: Our study had a qualitative descriptive binational design using qualitative content analysis to explore diaries written by close family members (n=15). Participants were recruited from university hospitals in Denmark and Sweden. FINDINGS: Three main categories emerged: Trajectory, Treatment, and Patient & Family. The first helped us construct an overview of the NSTI trajectory showing issues of importance to patient and family caregivers. The following categories were analysed further to describe four themes central to the family caregiver experience: craving information, needing to be near, suffering separation and network taking over. CONCLUSIONS: Necrotising soft tissue infections are uncommon causing shock and concern. Centralised treatment might involve physical separation of patient and family during the acute stage of illness. Family accommodations near the patient and accessibility to adequate communication devices at the bedside are recommended. Health professionals need to keep in mind the importance of information and reassurance on the wellbeing of the family and ultimately of the patient.