Children with chronic complex conditions: Preferences for digital and in persons support and involvement in their own care-a qualitative interview study

Abstract

Children living with chronic complex conditions (CCC) face challenges that affect their daily lives, often negatively impacting their perception of life, health, and overall well-being. A person-centered approach by healthcare professionals can facilitate better support tailored to each child’s individual needs. This approach can be applied both digitally and in person within healthcare settings; however, there is limited knowledge regarding the type of support children prefer. This study aims to describe how children with complex chronic conditions (CCC) experience digital and in-person support, their information needs, and their perceived participation in their own healthcare. Twelve children aged 10 to 17 years were individually interviewed, using a qualitative descriptive method. The data were analyzed with manifest content analysis, where two categories were identified: “Support and involvement in one’s own healthcare” and “Receiving information in different ways.” Findings indicate that children with CCC require personalized information and support addressing their specific needs, incorporating both professional and peer-to-peer support. This study highlights a person-centered care in healthcare, which enhances children’s rights and encourages their active participation in their own care.