Caregiver voices: coordinating care for children with complex chronic conditions

Clinical Pediatrics
Shannon L Golden, Savithri Nageswaran

Abstract

Children with complex chronic conditions (CCC) receive care from multiple providers and agencies for a prolonged period of time. Coordination of care between providers is essential in the care of children with CCC. The purpose of this study was to determine which aspects of care coordination are important to caregivers and explore the challenges faced by caregivers in coordinating care. Using focus group methodology, the authors elicited experiences of caregivers relative to care coordination for children with CCC. Several themes emerged: (a) more information sharing and quality communication is needed among all those involved in providing care for children with CCC, (b) caregivers need help in navigating the system of care, and (c) caregivers develop strategies to cope with care coordination demands. Caregiver burden of coordinating care for children with CCC can be alleviated in part through improved communication and collaboration between agencies and providers and through developing easier ways to navigate a complex health system.

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Citations

Aug 3, 2014·Pediatric Clinics of North America·Savithri NageswaranAura Anania
Aug 3, 2014·Pediatric Clinics of North America·Scott Schwantes, Helen Wells O'Brien
Nov 18, 2014·Physical & Occupational Therapy in Pediatrics·Shanon K Phelan, Stella L Ng
Sep 13, 2016·International Journal of Integrated Care·Rowan HillisMichael Connolly
Nov 28, 2014·Journal of the American Psychiatric Nurses Association·Carmen Caicedo
Apr 30, 2017·Academic Pediatrics·Savithri Nageswaran, Shannon L Golden
Feb 28, 2018·Child: Care, Health and Development·M MirzaM Martin
Sep 28, 2016·Home Healthcare Now·Savithri Nageswaran, Shannon L Golden
Mar 10, 2018·The Journal of Behavioral Health Services & Research·Ahrang YooSusan dosReis
Oct 7, 2017·Developmental Medicine and Child Neurology·Sherri AdamsEyal Cohen
Jul 30, 2019·Western Journal of Nursing Research·Lisa C LindleyChristine A Fortney
Apr 5, 2020·Child: Care, Health and Development·Akemi MatsuzawaAkemi Hirasawa
Jul 17, 2020·Clinical Pediatrics·Aaron PankewiczRenee M Turchi
Aug 19, 2020·Disability and Rehabilitation·Reshma Parvin NuriAhmed Shafiqul Huque
Jul 4, 2020·Home Healthcare Now·Emily J WareSavithri Nageswaran
Nov 11, 2020·Pediatric Annals·Holly OwensK Jane Lee
Mar 7, 2021·International Journal of Environmental Research and Public Health·Anna JanssenTim Shaw
Oct 2, 2021·Journal of Racial and Ethnic Health Disparities·Savithri NageswaranMark S Beveridge

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