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/10.1016/j.soncn.2021.151167" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.soncn.2021.151167</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 Knowledge Is Power: Benefits, Risks, Hopes, and Decision-Making Reported by Parents Consenting to Next-Generation Sequencing for Children and Adolescents with Cancer Publisher An entity responsible for making the resource available Seminars in Oncology Nursing Date A point or period of time associated with an event in the lifecycle of the resource 2021 Subject The topic of the resource Decision Making; Genomic sequencing; Parent perspectives; Pediatric oncology Creator An entity primarily responsible for making the resource Mandrell BN; Gattuso JS; Pritchard M; Caples M; Howard Sharp KM; Harrison L; Ouma AA; Valdez JM; Johnson LM; Nichols KE Description An account of the resource Objectives To qualitatively describe parent perspectives of next-generation genomic sequencing (NGS) for their children with cancer, including perceived benefits, risks, hopes/expectations, and decision-making process when consenting or not consenting to NGS and prior to result disclosure. Data Sources Qualitative interviews were used. Conclusion Altruism is an important factor in parents consenting to NGS testing, as well as making sense of their child's cancer and legacy building. Parents described realistic hopes and expectations associated with NGS participation. Although parents endorsed the likelihood of no medical benefit, those consenting to NGS felt there was no reason not to participate. Parents declining participation expressed avoidance of worry and parent guilt if a germline variant were to be disclosed. Implications for Nursing Practice As NGS evolves into a component of the routine diagnostic workup for pediatric cancer patients, genetic nurses play a role in conducting informed consent conversations and ensuring that patients and families have realistic hopes and expectations associated with NGS. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.soncn.2021.151167" target="_blank" rel="noreferrer noopener">10.1016/j.soncn.2021.151167</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 2022 Special Edition 1 - Parent Perspectives Caples M Decision Making Gattuso JS Genomic sequencing Harrison L Howard Sharp KM Johnson LM Mandrell BN Nichols KE Ouma AA parent perspectives Pediatric Oncology Pritchard M Seminars In Oncology Nursing Valdez JM 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 2021 Special Edition 2 - Oncology 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 2021 Special Edition - Oncology URL Address <a href="http://doi.org/10.1002/pon.5601" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pon.5601</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 A Quest for Meaning: A Qualitative Exploration among Children with Advanced Cancer and Their Parents Publisher An entity responsible for making the resource available Psycho-Oncology Date A point or period of time associated with an event in the lifecycle of the resource 2021 Subject The topic of the resource Oncology Creator An entity primarily responsible for making the resource Schaefer MR; Kenney AE; Himelhoch AC; Howard Sharp KM; Humphrey L; Olshefski R; Young-Saleme T; Gerhardt CA Description An account of the resource OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning-making pre-bereavement among children with advanced cancer and their parents. METHODS: As part of a larger study examining shared decision-making near the end of life, 24 children with advanced cancer and/or high-risk cancer, 26 mothers, and 11 fathers participated in individual, semi-structured interviews. Analyses focused on questions regarding meaning-making. Four coders analyzed the data via directed content analysis. RESULTS: Three major meaning-making themes emerged: (1) sense-making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit-finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning. CONCLUSIONS: Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high-risk illness. Clinicians might consider if meaning-centered interventions designed for use in adults at the end of life and bereaved parents may be helpful for children with advanced or high-risk cancer and their parents. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/pon.5601" target="_blank" rel="noreferrer noopener">10.1002/pon.5601</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 2021 Special Edition - Oncology Gerhardt CA Himelhoch AC Howard Sharp KM Humphrey L Kenney AE Olshefski R Oncology Psycho-Oncology Schaefer MR Young-Saleme T