Interventions for promoting participation in shared decision‐making for children and adolescents with cystic fibrosis

Background Shared decision‐making is important in child and adolescent healthcare because there is growing international recognition of children and young people's rights to be included in decisions that affect them. In order for young people to participate effectively in shared decision‐making they need to develop the skills of engagement with healthcare professionals and confidence in interacting with them. They also need to learn how to manage their condition and treatments on their own when they move into adulthood. Children and young people who participate in shared decision‐making in healthcare are likely to be more informed, feel more prepared, and experience less anxiety about the unknown. Significant improvements in cystic fibrosis (CF) survival over recent decades, due to improved therapies and better management of care, means that young people with CF are routinely transitioning to adult healthcare where increasing emphasis on self‐management brings greater complexity in decision‐making. We need to know what interventions are effective in promoting shared decision‐making for young people with CF. Objectives To assess the effectiveness of interventions that promote participation in shared decision‐making for children and adolescents (aged between four and 18 years) with CF. Search methods We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group's Cystic Fibrosis Trials Register, compiled from electronic database searches and handsearches of journals and conference books. We also searched the reference lists of articles and reviews addressing shared decision‐making. Date of most recent search: 12 March 2019. We searched PubMed, CINAHL (EBSCO), Embase (Elsevier), PsycINFO (EBSCO), WHO ICTRP, ASSIA (ProQuest), ERIC (ProQuest), ProQuest Dissertations and Theses, and ClinicalTrials.gov. We contacted study authors with published relevant research in shared decision‐making for adults to ask if they were aware of any published or ongoing studies on the promotion of the intervention for children or adolescents (or both) with CF. Date of most recent search: 19 March 2019. Selection criteria We planned to include randomised controlled trials (RCTs) (but not cross‐over RCTs) of interventions promoting shared decision‐making for children and adolescents with CF aged between four and 18 years, such as information provision, booklets, two‐way interaction, checking understanding (by the participant), preparation to participate in a healthcare decisio