Children with Chronic Health Conditions: Perceptions of Family Management

University Of Pennsylvania, Philadelphia PA

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Abstract

This study will examine family management of children with chronic health conditions (CHC) from the perspective of the child with a CHC. These children play a significant role in the family process with condition management issues that range from negligible to extremely demanding. The child's voice needs to be added to that of their parents in order to obtain a more complete model of family management of CHCs. Children with a CHC between the ages of 8 and 13 will provide insight into their perspective on their family life and condition management. Data from this non disease specific sample will provide insights that complement existing disease specific science. The specific aims of this study are to: 1) describe family management of childhood chronic health conditions (CHCs) from the perspective of the child who is between 8 and 13 years old and 2) describe the child's perception of how family management of the CHC relates to other areas of his/her life (school performance, participation in social and extracurricular activities, health care services, social network [peers and adults]). Individual interviews will be conducted to better understand the child's perspective of their family's management of the CHC, and what it means to them and their daily life. The data will be analyzed by an inductive content analysis with a more directed focus to examine the other areas of life. The knowledge we gain from these children will increase the scope of our understanding of family management of chronic conditions during childhood. It will also develop a foundation to 1) develop measurement tools appropriate for use with children with chronic conditions and 2) develop interventions that address both parental and child concerns. Discovering ways to improve condition management for families and individuals is important as improved management can decrease acute exacerbations, decrease use of health care resources, and improve the child and family quality of life.