A literature review of children's and young people's participation in decisions relating to health care

Aims and objectives. To review and critique the research literature on children's and young people's participation in health care decision-making, to highlight gaps in the research and to identify implications for nursing practice. Background. Children have a right to participate in decisions about their lives. The recognition of this, along with greater acknowledgement of children's capabilities, has led to an increasing awareness that children's views must be given value in both national policy and individual decisions. Health professionals have also been given explicit direction to ensure that children are actively involved in decision-making. Design. Literature review. Method. Search of electronic databases and manual searching of journals and reference lists between 1990-2009. Results. Children want to be involved in discussions about their care but it is unclear to what extent this happens in practice. The research conducted has interpreted participation in different ways. Studies have compared decisions of differing importance in terms of risk and many have a wide age range in their samples, including children who are arguably too young for meaningful participation. However, this heterogeneity is often overlooked in the reporting of studies. Aspects of practice which can help or hinder participation are identified but there is little evidence on the outcome benefits of participation. In addition, there has been an over-reliance on interviews as the method of data collection. Conclusions. Research using a combination of observation and interviewing would provide more in-depth knowledge about participation in practice. In addition, studies should consider decisions of similar consequence and children at an age when participation is appropriate. Relevance to clinical practice. The need for health professionals to ensure children are protected is undisputed but should not prevent children's rights to participate from being enacted. Practitioners, therefore, need further guidance on how to facilitate the participation of children.