Publication
"You Know the Medicine, I Know My Kid": How Parents Advocate for Their Children Living With Complex Chronic Conditions
Rafferty K, Sullivan S · Health Commun · 2016
Caring for a child with a chronic condition has received considerable attention in the pediatric health literature. Today, approximately 1 out of 5 North American children are diagnosed with a chronic condition that requires parents to become caregivers and advocates. Although advocacy is regarded as a significant aspect to parental caregiving, more research is needed to better define this oversimplified and misrepresented concept in clinical practice and research. Subsequently, we interviewed 35 parents of children diagnosed with complex chronic conditions. Within our analysis, we identified three themes that elaborate upon how parental advocacy is socially constructed through communication behaviors and partnerships with other people (e.g., medical professionals, family, school educators). We also discuss the emotional side of advocacy, and proffer suggestions to practitioners who work with parents to form collaborative care teams.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.