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Improving the Care Experiences of Families with CSHCN: Applying Ethnographic Findings


Primary Contact: Dana Hughes, DrPH

Grant Amount: $213,063 for 18 months

Date Awarded:


To provide specific guidance on how providers can improve the experience of families caring for CSHCN; and to identify systemic barriers to improving families’ experiences and recommend system and policy changes to overcome those barriers and facilitate improved care experiences.


In 2009 the Foundation funded an ethnographic study of a limited number of families with children with significant chronic health conditions to better understand their experiences both caring for their children and dealing with the health care system and other service providers. That project suggested six “models” or ways of representing and understanding the families’ experiences. This project built on the previous and was intended to see if the models seemed valid in the eyes of the family members and various other stakeholders and if they had suggestions for system improvement based on their experiences and observations. Through focus groups with over 50 parents and key stakeholder interviews additional insights about families’ experiences caring for children with special health care needs were made. In addition, the project included a review of literature on family-centered care published since the last review in 2010.