"You Know the Medicine, I Know My Kid": How Parents Advocate for Their Children Living With Complex Chronic Conditions

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 a...

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Bibliographic Details
Published inHealth communication Vol. 32; no. 9; pp. 1151 - 1160
Main Authors Rafferty, Katherine A., Sullivan, Shelbie L.
Format Journal Article
LanguageEnglish
Published England Routledge 02.09.2017
Routledge, Taylor & Francis Group
Subjects
Adult
Advocacy
Caregivers
Caregivers - psychology
Caregiving
Child
Children
Chronic conditions
Chronic Disease - therapy
Chronic illnesses
Clinical research
Emotions
Female
Humans
Integrated care
Male
Medical personnel
Medicine
Parents
Parents & parenting
Parents - psychology
Partnerships
Patient Advocacy
Pediatrics
Stress, Psychological
Teams
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Summary: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.
Bibliography:ObjectType-Article-1
SourceType-Scholarly Journals-1
ObjectType-Feature-2
content type line 23
ISSN:1041-0236
1532-7027
DOI:10.1080/10410236.2016.1214221