1 40 2 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/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1177/1049909120922973</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 Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents Publisher An entity responsible for making the resource available American Journal of Hospice & Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource Academic Medical Centers; Anticipatory Guidance; Bereavement; Chi Square Test; Child; Childhood Neoplasms; Communication; Data Analysis Software; Decision Making; Descriptive Statistics; Family; Funding Source; Health Resource Utilization; Midwestern United States; Parental Attitudes – Evaluation; Patient Preference; Professional-Family Relations; Professional-Patient Relations; Psychosocial; Quality of Life; Questionnaires; Record Review; Retrospective Design; Shared; Support; Terminal Care – In Infancy and Childhood Creator An entity primarily responsible for making the resource Sedig LK; Spruit JL; Paul TK; Cousino MK; McCaffery H; Pituch K; Hutchinson R Description An account of the resource Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. Methods: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. Results: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P =.002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. Conclusions: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">10.1177/1049909120922973</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 Academic Medical Centers American Journal of Hospice & Palliative Medicine Anticipatory Guidance Bereavement Chi Square Test Child Childhood Neoplasms Communication Cousino MK Data Analysis Software Decision Making Descriptive Statistics Family Funding Source Health Resource Utilization Hutchinson R McCaffery H Midwestern United States Parental Attitudes – Evaluation Patient Preference Paul TK Pituch K Professional-family Relations Professional-patient Relations psychosocial Quality Of Life Questionnaires Record Review Retrospective Design Sedig LK Shared Spruit JL Support Terminal Care – In Infancy and Childhood 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 November 2020 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 November 2020 List URL Address <a href="http://doi.org/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1177/1049909120922973</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 Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents Publisher An entity responsible for making the resource available American Journal of Hospice & Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource Academic Medical Centers; Anticipatory Guidance; Bereavement; Chi Square Test; Child; Childhood Neoplasms; Communication; Data Analysis Software; Decision Making; Descriptive Statistics; Family; Female; Funding Source; Health Resource Utilization; Human; Male; Midwestern United States; Parental Attitudes – Evaluation; Patient Preference; Professional-Family Relations; Professional-Patient Relations; Psychosocial; Quality of Life; Questionnaires; Record Review; Retrospective Design; Shared; Support; Terminal Care – In Infancy and Childhood Creator An entity primarily responsible for making the resource Sedig L K; Spruit J L; Paul T K; Cousino M K; McCaffery H; Pituch K; Hutchinson R Description An account of the resource Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. Methods: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. Results: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P =.002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. Conclusions: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">10.1177/1049909120922973</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 Academic Medical Centers American Journal of Hospice & Palliative Medicine Anticipatory Guidance Bereavement Chi Square Test Child Childhood Neoplasms Communication Cousino M K Data Analysis Software Decision Making Descriptive Statistics Family Female Funding Source Health Resource Utilization Human Hutchinson R Male McCaffery H Midwestern United States November 2020 List Parental Attitudes – Evaluation Patient Preference Paul T K Pituch K Professional-family Relations Professional-patient Relations psychosocial Quality Of Life Questionnaires Record Review Retrospective Design Sedig L K Shared Spruit J L Support Terminal Care – In Infancy and Childhood