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/10.1177/0030222817697418" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1177/0030222817697418</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 The Long Road to Farewell: The Needs of Families With Dying Children Publisher An entity responsible for making the resource available Omega Date A point or period of time associated with an event in the lifecycle of the resource 2019 Subject The topic of the resource cancer; pediatric palliative care; bereaved parents; bereavement; trauma Creator An entity primarily responsible for making the resource Cacciatore J; Thieleman K; Lieber AS; Blood C; Goldman R Description An account of the resource Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with health-care providers. This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child's terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants' perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence, and thus compounded the experience of loss. Specifics and implications for practice are explored. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/0030222817697418" target="_blank" rel="noreferrer noopener">10.1177/0030222817697418</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). 2019 2022 Special Edition 1 - Parent Perspectives Bereaved Parents Bereavement Blood C Cacciatore J Cancer Goldman R Lieber AS Omega Pediatric Palliative Care Thieleman K Trauma