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Health, medicines and self-care choices made by children, young people and their families: Information to support decision making

Researchers: Anne Williams, Jane Noyes, Peter Brocklehurst, Terry Threadgold, John Gregory, Mary Lewis, Davina Allen, Cynthia Carter, Simon Lenton, Lesley Lowes, Tammy Boyce

Partnership between the public and NHS is seen as the key to a healthier society and cost-effective care. A requirement of this participative model is the provision of high quality information. There is, however, little information produced specifically for children (up to 18 years) and their families, and little evidence concerning types and formats which could empower children, young people and their families’ decision making, especially concerning medicines which are the most commonly used therapeutic NHS intervention.

The project which commenced in April 2007 and will complete in March 2010 has been commissioned by the SDO to address knowledge gaps about the types and formats of information which could support and empower children and their families’ decision-making in respect of health, medicines and self-care. Our objectives are to identify:

1. Types and characteristics of information sources available;
2. How information sources are taken into account when decisions are made;
3. Preferences about the type and format of information to support decision-making and promote concordance;
4. Differences between children, young people and their families in respect of information preferences;
5. When it is appropriate for children and young people to be making choices;
6. How appropriateness, in terms of choices made, is negotiated between children/young people, families and the health service, and
7. Diversity of health information needs stratified by age, gender, ethnicity and socioeconomic status.


The investigation is a mixed method study informed by the discipline of social anthropology and conducted through three inter-related phases. The following tracer-conditions are used to focus the research with a specific, although not exclusive, emphasis on medicines: long-term conditions – asthma, diabetes, epilepsy, and disabled children with complex needs. Acute care conditions – unplanned orthopaedic surgery/interventions, planned ENT surgery. The study is being conducted in three phases.

Phase 1: Context:
We are conducting a wide-ranging literature review in order to describe the current policy and practice evidence-base concerning children’s information needs and critical discourse analysis of currently available children’s information sources.
Phase 2: In depth study with children, young people, family members and healthcare professionals:
We will conduct focus groups, semi–structured interviews and non-participant observation in natural settings to address a range of questions concerning what children think about currently available information sources (Focus groups) and what information children and their families need and how and when they and health care professionals use information sources to support decision-making concerning choice (interviews and observation).
Phase 3: Data synthesis and comparative analysis:
Data from phases 1 & 2 will be integrated using evidence based methods


The project outcomes will include: types, formats and characteristics of information which are likely to support children’s decision-making and choices around predominantly medicines and clinical options. There will be outcomes for related areas, for example location of care, range and diversity of information needs and preferences stratified by age, gender, ethnicity and socioeconomic status, and gaps remaining in the evidence base.


The National Institute for Health Research Service Delivery and Organisation Programme (SDO)