The Information Matters Project: health, medicines and self-care choices made by children, young people and their families: information to support decision-making. Study protocol

Title. The Information Matters Project: health, medicines and self‐care choices made by children, young people and their families: information to support decision‐making. Study protocol. Aim. This protocol outlines a study to address knowledge gaps about the types and formats of children’s information which could support decision‐making in respect of health, medicines and self‐care. Background. Partnership between the public and health services is seen as the key to a healthier society and cost‐effective care. A requirement of participative models is the provision of high quality information. Little information is available specifically for children, young people and their families, and little evidence concerning types and formats which could support decision‐making. Methods. A mixed‐method study will be conducted through three inter‐related phases. Tracer‐conditions will be used to focus the research, with a specific, although not exclusive, emphasis on medicines. Phase 1: Context: systematic literature review and critical discourse analysis of currently available children’s information. Phase 2: In‐depth study: we will conduct focus groups, semi‐structured interviews and non‐participant observation to address a range of questions about what children think about currently available information sources (focus groups), what information children and their families need and how and when they and healthcare professionals use information sources to support decision‐making concerning choice (interviews and observation). Phase 3: data synthesis and comparative analysis. Discussion. Outcomes include the types, formats and characteristics of information likely to support children’s decision‐making and choices predominantly around medicines and clinical options.