1 40 1 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 A name given to the resource September 2021 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month September 2021 List URL Address <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 A name given to the resource Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey Publisher An entity responsible for making the resource available The Patient Date A point or period of time associated with an event in the lifecycle of the resource 2021 Subject The topic of the resource children; Family; metabolic diseases; caregiver experiences; cross-sectional survey Creator An entity primarily responsible for making the resource 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 An account of the resource 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. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1007/s40271-021-00538-8" target="_blank" rel="noreferrer noopener">10.1007/s40271-021-00538-8</a> Rights Information about rights held in and over the resource 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