The sepsis journey and where digital alerts can help: a qualitative, interview study with survivors and family members in England

Introduction: The fight against sepsis is an ongoing healthcare challenge, where digital tools are increasingly used with some promising results. The experience of survivors and their family members can help optimize digital alerts for sepsis/deterioration. This study pairs the experiences of survivors of their sepsis journey and family members with their knowledge and views on the role of digital alerts.

Methods: A qualitative study with online, semi-structured interviews and focus groups with sepsis survivors and family members in England. Data were analyzed inductively using thematic analysis.

Results: We included 11 survivors, and 5 family members recruited via sepsis charities and other social media, for a total of 15 sepsis cases. Identified categories correspond to the three stages of the sepsis journey: 1. Pre-hospital, onset symptoms and help-seeking; 2. Hospital admission and stay; 3. Post-sepsis syndrome. The role of digital alerts at each stage of the sepsis journey is discussed. Participants’ experiences were varied, previous sepsis awareness scant, and knowledge of digital alerts minimal. However, participants were confident in the potential of alerts contributing along the sepsis journey. They perceived digital alerts as important in healthcare professionals’ decision-making to expedite identification and treatment of sepsis and suggested their expansion across healthcare services. Participants expressed that awareness should be increased among the general public about digital alerts for sepsis/deterioration.

Discussion: In light of sepsis’ insidious and variable manifestation, the involvement of patients and family members in the development of digital alerts is crucial to optimize their design and deployment towards improving outcomes. Digital alerts should enhance the connection across healthcare services as well as the care quality. They should also enhance the communication between patients and healthcare professionals.

Clinical trial registration: The ClinicalTrials.gov registration identifier for this study is NCT05741801; the protocol ID is 16347.