Child involvement in the paediatric consultation: a qualitative study of children and carers' views

Background This study aimed to investigate child and carers' attitudes towards child involvement in paediatric consultations. Methods Semi‐structured qualitative interviews explored child and carers' attitudes towards child involvement at different stages of the paediatric consultation process. Twenty families (21 children, 17 mothers and 5 fathers) were interviewed following a paediatric (index) consultation in two UK paediatric inpatient and outpatient departments. Results All but one family felt the child should be involved at some stage of the consultation process but the desired extent and nature of involvement depended on child, family and illness characteristics, as well as on the stages of the consultation. During history gathering, some parents and children felt it was the decision and responsibility of the parent to facilitate communication between the child and the doctor. Others expected the doctor to decide when and how to facilitate this process. At diagnosis the desired amount of information given to the child increased with increasing maturity in the child. Some felt making a diagnosis should be a collaborative process; others felt it was solely the domain of the doctor. In discussing and making a treatment plan, some children wanted to be given the choice of being involved and some wanted their parents to be responsible for implementing the plan. Some families with a seriously ill child, however, wanted the burden of involvement in the management plan taken away from them. Conclusions Families vary in their views about involvement of children in paediatric consultations in a way that may be unique to each child, family and illness. Moreover, different views were expressed about involvement in each stage of the consultative process and in management of the child's health. The challenge for doctors is to determine the level of involvement and information exchange favoured by a particular parent and child. Good practice recommendations emerging from the analysis are described