The Experiences of Sepsis in People with a Learning Disability--A Qualitative Investigation

Background: Sepsis is a common cause of death within the general population and the third most common cause of death for people with a learning disability, suggesting an increased vulnerability or different trajectory within this population. Despite this, there is currently no research into the direct lived experiences of people with a learning disability who develop and recover from sepsis. Methods: Semi-structured interviews were conducted with 3 people with a learning disability (average age of 44.7, range of age 33 to 68) who experienced sepsis and 5 carers (1 familial and 4 professional carers) (average age of 48.8, range of age 43 to 58) who had supported an individual with a learning disability while they had sepsis. Sepsis was caused by a range of physical health problems. Face-to-face semi-structured interviews were conducted, transcribed and analysed using thematic analysis. Findings: Six main themes were identified: chronic and acute pre-existing health conditions, experiences within the hospital setting, physical recovery, mental recovery, returning to a normal life and the implications of sepsis. The findings highlighted some of the ongoing difficulties for people with intellectual disabilities in accessing timely healthcare provision and the ongoing mental health problems, even after physically recovering from sepsis. People with a learning disability have more comorbid health conditions which may compound the longer-term effects of sepsis. Conclusion: Future research should be conducted with people with learning disabilities about their experiences shortly after recovery from sepsis, to mitigate the effects of memory difficulties in recalling experiences.