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 Special Edition #1 2022 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 Special Edition #1 2022 List URL Address <a href="http://doi.org/10.1001/jamanetworkopen.2020.10337" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1001/jamanetworkopen.2020.10337</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 Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity Publisher An entity responsible for making the resource available JAMA Network Open Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource Preschool Child; Advance Care Planning; Bereavement; Caregivers; Child; Infant; Interviews as Topic; Male; Multimorbidity; Parents; Terminal Care Creator An entity primarily responsible for making the resource Lord S; Moore C; Beatty M; Cohen E; Rapoport A; Hellmann J; Netten K; Amin R; Orkin J Description An account of the resource Importance: Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing of death; however, there is a paucity of literature that describes the experience of ACP from the perspective of bereaved family caregivers of CMC. Objective: To explore the experiences of bereaved family caregivers with ACP for CMC. Design, Setting, and Participants: This qualitative study included 12 interviews with 13 bereaved family caregivers of CMC whose deaths had occurred in the 5 years before study commencement (2013-2018). Participants were recruited at a single tertiary care pediatric center; CMC were treated by the Complex Care or Long-term Ventilation clinic in Toronto, Ontario, Canada. Data were collected from July to October 2018. Thematic analysis with an inductive approach was used. Exposures: Qualitative interviews were conducted using purposive sampling of bereaved family caregivers using semistructured interviews that were recorded and transcribed. Interviews were conducted until saturation was reached. Main Outcomes and Measures: Transcripts were analyzed to create themes that characterized caregiver experiences with ACP. Results: A total of 13 family caregivers were interviewed in 12 interviews, all of whom were parents (12 [92%] women, 1 [8%] man) of a deceased child (aged 7 months to 12 years). Themes were divided in the 3 following categories, which align with the Donabedian model for health service quality: (1) structure of care, (2) ACP process, and (3) end-of-life experience. Notable subthemes for this population included the importance of accounting for parental expertise in the child's care, recurrent experiences with life-threatening events, relative shock of the timing of death, and the multiple losses that caregivers experienced. Conclusions and Relevance: In this study, parental experiences revealed that there are key aspects of the structure of the child's care, process around ACP, and end-of-life care experiences that provide important reflections on ACP that warrant future study. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1001/jamanetworkopen.2020.10337" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.10337</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). 2020 2022 Special Edition 1 - Parent Perspectives Advance Care Planning Amin R Beatty M Bereavement Caregivers Child Cohen E Hellmann J Infant Interviews As Topic JAMA Network Open Lord S Male Moore C multimorbidity Netten K Orkin J Parents Preschool Child Rapoport A Terminal Care