Young children's perspectives on treatment and care: A qualitative study using narrative and play-based interviewing

To explore young children's (age 3-6 years) own experiences and perceptions of treatment and care when living with a chronic illness.

The study employed a qualitative research design using a narrative and play-based interview approach. Individual face-to-face, narrative and play-based interviews were conducted with eight young children age 3-6 years with type 1 diabetes or cystic fibrosis. The play sessions took place at the home of the children and were video recorded. Interpretative phenomenological analysis was used to analyse the data and frame the study.

Our analysis identified six main themes: 1. Children understood illness through their bodily experience of treatment and care, 2. Children's experience of care and treatment ranged from a feeling of powerlessness to a sense of agency, 3. Children depended on their parents to provide comfort, advocacy and protection, 4. Children's perceptions of treatment and care were inherently related to their experiences of familiarity, interpersonal relationships and trust, 5. Children with type 1 diabetes did not perceive that they played an active role during consultations, and 6. Children associated medical treatment with receiving tangible rewards or positive feedback.

Children expressed a need to feel safe and build agency. They experienced this through participation and interpersonal relationships with healthcare professionals.

We should prioritize the establishment and implementation of age-appropriate psychosocial care practices that support young children in participating, forming relationships, and building trust.