Author Of 1 Presentation
THE VOICE OF THE CONSUMER: EXPERIENCES OF FAMILIES AFFECTED BY PAEDIATRIC SEPSIS AND PRIORITIES FOR FUTURE INTERVENTION
Abstract
Background
Low public awareness of sepsis leads to delayed recognition and treatment, and increases risk of death or disability. At present, there is no integrated approach to care and follow-up family members affected by sepsis. There is a lack of studies assessing the patient and family perspective in paediatric sepsis.
Objectives
To conduct a qualitative analysis of families affected by paediatric sepsis exploring their overall experience, understanding of sepsis prior and post diagnosis, support needs during and after the acute illness, and perceived gaps in service.
Methods
Qualitative research using focus group and individual interviews to explore the experiences of a total of 10 families whose child had sepsis, at the Queensland Children’s Hospital, Brisbane, Australia. We used purposive sampling to capture a range of urban, rural and remote families impacted by sepsis. Thematic analysis was used to identify and prioritize themes to guide outcomes.
Results
Primary themes identified focus on: 1. Education of general public and healthcare sectors on childhood sepsis to improve early detection, 2. minimising isolation experienced by affected families; 3. including family members throughout treatment, education and sepsis resource development; 4. need for targeted support for families throughout the entirety of their child’s health journey including survival and bereavement.
Conclusion
Consumer-focussed research identified priorities for practice, health care organizations, and research in paediatric sepsis. In addition to public and healthcare sector education and awareness campaigns, the need for targeted support for families affected by paediatric sepsis, during and post hospitalisation was identified as a priority.