The experiences of sepsis in people with a learning disability-a qualitative investigation

Accessible summary Sepsis is a very serious illness. It is a common cause of death in people with learning disabilities. We wanted to understand what it is like for people with a learning disability to have sepsis. We asked three people with a learning disability and five of their carers what it was like when they had sepsis. We asked about their health before sepsis, how their sepsis was treated and what health services could have done better. Carers often felt that people's mental health was worse after sepsis. They thought that even when people were physically better, their mood and behaviour was still affected. After sepsis, people were more worried about their physical health, and carers were careful to follow up on every health concern. 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.