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Dublin Core
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September 2021 List
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September 2021 List
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<a href="http://doi.org/10.1007/s40271-021-00538-8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s40271-021-00538-8</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey
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The Patient
Date
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2021
Subject
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children; Family; metabolic diseases; caregiver experiences; cross-sectional survey
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Chow AJ; Pugliese M; Tessier LA; Chakraborty P; Iverson R; Coyle D; Kronick JB; Wilson Kumanan; Hayeems R; Al-Hertani W; Inbar-Feigenberg M; Jain-Ghai S; Laberge AM; Little J; Mitchell JJ; Prasad C; Siriwardena K; Sparkes R; Speechley KN; Stockler S; Trakadis Y; Walia JS; Wilson BJ; Potter BK
Description
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BACKGROUND AND OBJECTIVE: Children with inherited metabolic diseases often require complex and highly specialized care. Patient and family-centered care can improve health outcomes that are important to families. This study aimed to examine experiences of family caregivers (parents/guardians) of children diagnosed with inherited metabolic diseases with healthcare to inform strategies to improve those experiences. METHODS: A cross-sectional mailed survey was conducted of family caregivers recruited from an ongoing cohort study. Participants rated their healthcare experiences during their child's visits to five types of healthcare settings common for inherited metabolic diseases: the metabolic clinic, the emergency department, hospital inpatient units, the blood laboratory, and the pharmacy. Participants provided narrative descriptions of any memorable negative or positive experiences. RESULTS: There were 248 respondents (response rate 49%). Caregivers were generally very or somewhat satisfied with the care provided at each care setting. Appropriate treatment, provider knowledge, provider communication, and care coordination were deemed essential aspects of satisfaction with care by the majority of participants across many settings. Memorable negative experiences were reported by 8-22% of participants, varying by setting. Among participants who reported memorable negative experiences, contributing factors included providers' demeanor, lack of communication, lack of involvement of the family, and disregard of an emergency protocol letter provided by the family. CONCLUSIONS: While caregivers' satisfaction with care for children with inherited metabolic diseases was high, we identified gaps in family-centered care and factors contributing to negative experiences that are important to consider in the future development of strategies to improve pediatric care for inherited metabolic diseases.
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<a href="http://doi.org/10.1007/s40271-021-00538-8" target="_blank" rel="noreferrer noopener">10.1007/s40271-021-00538-8</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Al-Hertani W
caregiver experiences
Chakraborty P
Children
Chow AJ
Coyle D
cross-sectional survey
Family
Hayeems R
Inbar-Feigenberg M
Iverson R
Jain-Ghai S
Kronick JB
Laberge AM
Little J
Metabolic Diseases
Mitchell JJ
Potter BK
Prasad C
Pugliese M
September 2021 List
Siriwardena K
Sparkes R
Speechley KN
Stockler S
Tessier LA
the patient
Trakadis Y
Walia JS
Wilson Kumanan
Wilson BJ