Participation in communication and decision-making: children and young people's experiences in a hospital setting

Aim. To explore hospitalised children and young people's experiences of participation in communication and decision-making. Background. There is a growing recognition internationally that children and young people have a right to participate in matters that affect their lives. Although this has led to more support for children's participation in communication exchanges and decision-making in health care, there remains a lack of studies in this area. Design. Qualitative. Method. Data were obtained through a combination of focus groups and single interviews with participants aged 7-18 (n = 55), from three hospitals in Ireland. Results. Children wanted to be included in communication exchanges but appeared to occupy a marginal role with discussions largely carried out between parents and health professionals. They wanted to participate in 'small' everyday decisions about their care and treatment but were constrained mainly by adults' actions. Conclusion. Although children want to be included in the decision-making process, some prefer to leave the more 'serious' decisions to parents and health professionals, whilst others prefer to share the decision. Children's preferences can vary; therefore, decision-making should be seen as being on a continuum rather than an 'all or nothing' basis. Relevance to clinical practice. Health care professionals and parents appear to play a significant role on whether children's efforts to participate are facilitated and supported in the hospital setting. Clearly, some may have reservations/concerns about children's participation, which suggests the need for clear guidelines/policies that reflect all stakeholder views. Children should be supported in having their voices heard in matters that directly affect their lives.