Literature DB >> 27588934

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

Katherine A Rafferty1, Shelbie L Sullivan2.   

Abstract

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.

Entities:  

Mesh:

Year:  2016        PMID: 27588934     DOI: 10.1080/10410236.2016.1214221

Source DB:  PubMed          Journal:  Health Commun        ISSN: 1041-0236


  6 in total

Review 1.  Children's complex care needs: a systematic concept analysis of multidisciplinary language.

Authors:  Maria Brenner; Claire Kidston; Carol Hilliard; Imelda Coyne; Jessica Eustace-Cook; Carmel Doyle; Thelma Begley; Michael J Barrett
Journal:  Eur J Pediatr       Date:  2018-08-08       Impact factor: 3.183

2.  Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies.

Authors:  Laura Ellen Ashcraft; Miya Asato; Amy J Houtrow; Dio Kavalieratos; Elizabeth Miller; Kristin N Ray
Journal:  Patient       Date:  2019-04       Impact factor: 3.883

Review 3.  Programmes to support transitions in community care for children with complex care needs: a scoping review.

Authors:  Sydney Breneol; Shelley Doucet; Jessie-Lee McIsaac; Angela Riveroll; Christine Cassidy; Patricia Charlton; Holly McCulloch; Shelley McKibbon; Alison Luke; Jennifer Splane; Janet A Curran
Journal:  BMJ Open       Date:  2022-07-08       Impact factor: 3.006

4.  "The challenge of managing insecurities": Parents' experiences with the care for their child with congenital diaphragmatic hernia.

Authors:  Violet Petit-Steeghs; Carina A C M Pittens; Magda J M Barnhoorn; Jacqueline E W Broerse
Journal:  J Spec Pediatr Nurs       Date:  2019-04-26       Impact factor: 1.260

5.  Unmet Needs of Male Caregivers of Children and Youth with Special Health Care Needs.

Authors:  Allyson Lynch; Valerie Raziano; Katie Feehan; Eileen Thompson; Philip Massey; Renee Turchi
Journal:  Matern Child Health J       Date:  2021-10-15

6.  "I Know How to Advocate": Parents' Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder.

Authors:  Joanne Smith-Young; Roger Chafe; Rick Audas; Diana L Gustafson
Journal:  Health Serv Insights       Date:  2022-02-24
  6 in total

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