Rural family caregiving for children with complex chronic conditions: a grounded theory study.

Abstract

Although rural families of children with complex chronic conditions (CCCs) face many of the same caregiving challenges urban families face, they may face additional, unique challenges. Geographical distance from specialists limits access to care and can contribute to compartmentalization of services and increased strain on the family. Relatively little is known about how rural family caregivers of children with CCCs manage complex care without many of the resources that are available to urban families. Previous research on family caregiving for children with CCCs has focused primarily on urban and suburban families; rural families have been underrepresented. The aims of this study were to (a) identify and describe how rural family caregivers manage caregiving for children with complex chronic conditions, and (b) develop a theoretical model of rural family caregiving for children with complex chronic conditions. Principles of family-centered care and an ecological perspective provided the conceptual framework for this grounded theory study. Semi-structured, in-depth interviews were conducted with nine primary family caregivers of children with CCCs who resided in rural counties in northwestern Minnesota. Analysis of data led to identification of the central category, Managing with Limited Resources, and development of a theoretical model of rural family caregiving for children with CCCs. Recommendations are made for improving care to children with CCCs and their families in rural, underserved areas.