Children at risk of anaphylaxis: A mixed-studies systematic review of parents' experiences and information needs

To explore parents' self-reported experiences and information needs regarding recognition and management of pediatric anaphylaxis.

We searched Ovid Medline, Ovid PsychInfo, CINAHL Plus, the Cochrane Library, and grey literature to identify primary studies in English or French published since 2000. We used a mixed-method appraisal tool and convergent integrated approach to assess quality and synthesize data, respectively.

43 studies were included (22 quantitative, 19 qualitative, and 2 mixed-method); 77% of studies had high methodological quality. Parents' experiences were categorized as: recognizing an anaphylactic reaction; managing and responding to a reaction; emotional impact of caring for a child at risk of anaphylaxis; and interaction with the health system and healthcare providers. Parents' information needs were categorized into themes relating to: gaps in knowledge and information; type of information desired; information sources; and information delivery format.

Negative emotional experiences and a general lack of information were commonly reported by parents of included studies. Provision of relevant and comprehensible information may help parents to make informed decisions and manage reactions promptly.

The findings of this review are guiding the development of an innovative knowledge translation tool (KT) as part of a larger initiative of developing a suite of parent-focused KT tools for acute childhood conditions.