Perspectives of family management from school-aged children with chronic health conditions: Through the eyes of the children

Families play a significant role in condition management processes. They influence how children interpret their Chronic Health Conditions (CHC) and interact with others at home and in social settings as well as how others interact with them. A gap currently exists in understanding children\u27s perspectives about family management of their CHCs. It is, therefore, important to elicit children\u27s perspectives and use them to inform future family management models. A qualitative, descriptive study was conducted among 8 to 13 year old children who had a variety of CHCs. They were asked to (a) describe family management of their CHCs within the home; (b) describe family management of their CHCs in social settings (i.e., at school, at extracurricular events, in health care settings, and within peer and adult social networks); (c) describe their own roles, responsibilities, and decision-making processes in a condition management context. Content analysis of their responses (N=32) to semi-structured interviews deepened the current understanding of children\u27s perspectives regarding what family management means to them, how it impacts their daily lives, and how roles and responsibilities are distributed among parents and children during middle childhood. The school-aged children discussed condition management from a family perspective as well as from their own individual perspectives. The findings complement the Family Management Style Framework and broaden our understanding of condition management by adding the perspectives of the children about themselves and their families. Recommendations for future modifications of the framework include reconsideration of child identity and parent mutuality dimensions. Improvements in condition management among families and children have the potential to decrease both acute exacerbations and the use of health care resources while improving quality of life for children and their families. This research provides a foundation for future studies to identify related measures, interventions and policy changes related to school-aged children with CHCs and their families