Decision Making about Risk of Infection by Young Adults with CF

Abstract

Young people with cystic fibrosis (CF) are asked to avoid a number of environments associated with increased infection risk, but in practice they need to balance this with competing priorities such as building and sustaining relationships with friends and family. This study explored the process by which young people make these decisions. Mixed methods were used: a vignette study presenting choices around engaging in activities involving a degree of infection risk and a thematic analysis of participant's accounts of their decision making. The eight participants chose to engage in high risk behaviours in 59% of the choices. All participants chose to engage in at least one risky behavior, though this was less likely when the risk was significant. Thematic analysis revealed large areas of misunderstanding and lack of knowledge, leading to some potentially worrying misconceptions about the nature of infections and risk. Young people with CF are not currently making informed decisions around activities that involve increased risk of infection, and there is an urgent need for CF teams to address this in information provision.

Adherence to infection prevention and control guidelines: A vignette-based study of decision-making and risk-taking in young adults with cystic fibrosis

“…The survey recorded participants' self-reported demographics (age, gender, height, and FEV1%) and their decisions about courses of action in four vignettes adapted from our qualitative study 13 . These were based on current IPC guidelines 1 …”

“…In our previous qualitative work 13 , eight young adults with CF were shown infectionrelated social vignettes and asked to discuss their decision-making about associated risks.…”

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

“…"At the end of the day you cannot sort of shut yourself away....I think it' s really important to think about infection, but I think some people could take it too far." 95 Transplant expectations and uncertainty Confirmed severity of disease "Being listed [for transplant] signified a point in the chronic illness trajectory at which there was no longer any advantage in delaying the transplant procedure." 37 …”

Infection control in cystic fibrosis: evolving perspectives and challenges

“…The acceptance of risk however is a very individual decision, and views on risk of infection in any particular situation will differ from person to person. One interview-based study explored the views of a small number of young people with CF on risk of infection posed by a number of different scenarios [68]. The investigators identified that knowledge varied around potential risk for infection, but also individuals displayed different attitudes to approach of risk, often weighing risk of infection against the potential benefits of engaging in an activity and their desired lifestyle.…”