“People expect you to work like you don’t have a child but be a mum like you don’t have a job’

Abstract

Abstract Background Recent UK campaigns that aim to increase awareness of sepsis have been accompanied by high profile media reporting about deaths in children resulting from misdiagnosis. Parents have been urged by the Sepsis Trust to have a low threshold for suspecting sepsis when their child is unwell and to follow ‘gut instincts’, challenging health professionals if necessary. This study aims to explore how parents enact this advice in the context of everyday life. Methods Thematic analysis of 16 focus groups comprised of parents and carers of pre-school children and 4 groups with individuals affected by sepsis. Findings Participants encountered various barriers and conflicts of interest when endeavouring to do the ‘right’ thing in managing acute childhood illness. Gaining access to healthcare was often challenging, with parents weighing up the need for reassurance against fears of over using scarce health care resources. Despite knowledge of recent sepsis awareness campaigns, parents frequently reported that the diverse symptoms described were too non-specific to be of practical use. ‘Knowing your child’ and being able to detect subtle deviations from normal was seen as key to decision-making about the need to escalate care. However, for parents in paid employment, the obligation to be present with their sick child to monitor symptoms closely was often in conflict with their duty to employers. The capacity to work flexibly, while highly valued, was inconsistent and frequently based on discretion of line managers rather than supported by official workplace policies. Conclusions Recent awareness campaigns have highlighted the need for parents to be alert to the possibility of sepsis when their child is acutely unwell. However current campaign materials do not enable parents to confidently identify when to seek help. Lack of access to primary care appointments and unsupportive employment policies may act as barriers to acting in accordance with sepsis awareness messages. Key messages Recent sepsis awareness campaigns focus on the importance of ‘parental instinct’ in managing risk. Parents often experience conflicting obligations towards their child and employer which can act as a barrier when monitoring risk during episodes of acute illness.