9 “The Child's Voice”: Perceptions of Healthcare Systems for Children Aged 8-12 Referred for Neurobehavioural Concerns: A Focus Group Study

Abstract

Abstract Background Providing children with a voice to tell their story and to fully participate in the plan of care has not been commonly reported in the literature. Paediatric health assessments traditionally rely on caregiver opinions and the interpretation of the child’s view rather than the child’s first voice perspective. Objectives This study focused on the experiences of children seeing a paediatrician primarily for neurobehavioural issues, such as autism and attention-deficit hyperactivity disorder (ADHD). The study was designed to provide children with the opportunity to share their thoughts directly rather than through a caregiver. Design/Methods This study, approved by the Horizon Health Network Research Ethics Board, used a qualitative design. 11 children between 8-12 years of age were recruited. These children were interviewed across three focus groups conducted using a semi-structured approach. The interview questions focused on emotions and opinions surrounding their care. Discussions were primarily led by the children. Focus groups were transcribed and analyzed using the six phases of inductive thematic analysis. Results Three overarching themes were identified: trust, boredom, and resolution (Figure 1). Trusting in their parent’s ability to communicate for them and regarding the doctor as an expert appeared as two subthemes. Children also reported feeling substantial levels of boredom at appointments, although “missing school” and “getting a treat” were reported as positives. Despite these feelings of boredom, many children expressed that the doctor provided them with a feeling of change or resolution, and that their visits were addressing their problems and needs.​ They also report disagreement may be perceived as being ungrateful for the help. Overall, children felt trust in their physician and parental intentions, along wit feeling positive about results. However, children’s views of their care are possibly influenced by the belief that decisions will be made for them, regardless of their voice. When children disagree with care, they may not voice this because of possibly perceived negative consequences. Conclusion Children must have a voice to ensure that we meet them ‘where they are’ as care providers and make goals and plans tailored to their needs, regardless of parent or physician bias or opinion. This is a cornerstone to upholding the Rights of the Child and ensuring patient-centred care. ​