1 40 6 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 October 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 October 2021 List URL Address <a href="http://doi.org/10.1097/NJH.0000000000000786" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1097/NJH.0000000000000786</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 Advance Directives for Adolescents and Young Adults Living With Neuromuscular Disease: An Integrative Review of the Literature Publisher An entity responsible for making the resource available Journal of Hospice and Palliative 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 adolescents and young adults; advance directives; goals of care; neuromuscular disease; palliative care Creator An entity primarily responsible for making the resource Battista V; Baker DJ; Trimarchi T; Sabri B; D'Aoust RF; Wright R Description An account of the resource The use of advance directives is an important component in helping individuals living with chronic and/or life-threatening illnesses establish goals of care and make decisions regarding care at the end of life. Advance care planning may help achieve enhanced health outcomes, yet it is not routinely offered to adolescents/young adults living with neuromuscular disease. An integrative review of the literature was conducted to examine the evidence related to the use of advance directives with adolescents/young adults living with neuromuscular disease and to identify reasons why they are not being used and how this can be improved. Three-hundred-seven studies were retrieved from PubMed, CINAHL, and EMBASE. Five studies met the final inclusion search criteria and were included in the analysis. Four themes emerged from the literature: conversations about advance directives with adolescents/young adults with neuromuscular disease are not being conducted, only a small number of patients have documented advance directives, patients want to have conversations about goals of care and want to have them sooner, and there is a lack of evidence in this area. These findings may influence neuromuscular clinicians' practice surrounding the use of advance directives and increase their knowledge regarding the need for discussions regarding goals of care. Copyright © 2021 by The Hospice and Palliative Nurses Association. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1097/NJH.0000000000000786" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000786</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 adolescents and young adults Advance Directives Baker DJ Battista V D'Aoust RF Goals Of Care Journal of Hospice and Palliative Nursing Neuromuscular Disease October 2021 List Palliative Care Sabri B Trimarchi T Wright R 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 Backlog URL Address <a href="http://doi.org/10.1097/NJH.0000000000000095" target="_blank" rel="noreferrer">http://doi.org/10.1097/NJH.0000000000000095</a> <a href="http://journals.lww.com/jhpn/Abstract/2014/10000/Caring_for_the_Infant_With_Trisomy_18__The.3.aspx" target="_blank" rel="noreferrer">http://journals.lww.com/jhpn/Abstract/2014/10000/Caring_for_the_Infant_With_Trisomy_18__The.3.aspx</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 Caring for the Infant With Trisomy 18: The Bioethical Implications of Treatment Decisions on Nurses Publisher An entity responsible for making the resource available Journal Of Hospice & Palliative Nursing Date A point or period of time associated with an event in the lifecycle of the resource 2014 Creator An entity primarily responsible for making the resource Santucci G; Battista V; Kang TI Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1097/NJH.0000000000000095" target="_blank" rel="noreferrer">10.1097/NJH.0000000000000095</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). Type The nature or genre of the resource Journal Article Description An account of the resource 2014-10 2014 Backlog Battista V Journal Article Journal Of Hospice & Palliative Nursing Kang TI Santucci G 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 Backlog URL Address <a href="http://doi.org/10.1016/j.soncn.2014.08.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.soncn.2014.08.003</a> <a href="http://www.seminarsoncologynursing.com/article/S0749208114000631/abstract" target="_blank" rel="noreferrer">http://www.seminarsoncologynursing.com/article/S0749208114000631/abstract</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 Contributions of Palliative Care to Pediatric Patient Care 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 2014 Subject The topic of the resource Pediatric oncology; Nursing; Pediatric palliative care Creator An entity primarily responsible for making the resource Mandac C; Battista V Description An account of the resource Objectives To provide an overview of pediatric palliative care (PPC) as it relates to children and families living with oncologic disease. Data Sources Journal articles, clinical research reports, clinical guidelines, and national statistics. Conclusion As new treatment protocols become available, the need for simultaneous supportive PPC, including adequate pain and symptom management, is evident. Further research and PPC program development is necessary for adherence to the current recommendation that PPC should be initiated at the time of diagnosis and continue throughout the course of a child's disease. Implications for Nursing Practice Palliative care nursing holds a specific role in the pediatric oncology setting. Registered nurses and advanced practice nurses should be adequately trained in PPC because they are in an optimal role to contribute to interdisciplinary PPC for pediatric oncology patients and their families. 2014-11 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.soncn.2014.08.003" target="_blank" rel="noreferrer">10.1016/j.soncn.2014.08.003</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). Type The nature or genre of the resource Journal Article 2014 Backlog Battista V Journal Article Mandac C Nursing Pediatric Oncology Pediatric Palliative Care Seminars In Oncology Nursing 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 Backlog URL Address <a href="http://doi.org/10.1177/0883073810381924" target="_blank" rel="noreferrer">http://doi.org/10.1177/0883073810381924</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 Consensus statement on standard of care for congenital muscular dystrophies Publisher An entity responsible for making the resource available Journal Of Child Neurology Date A point or period of time associated with an event in the lifecycle of the resource 2010 Creator An entity primarily responsible for making the resource Wang CH; Bonnemann CG; Rutkowski A; Sejersen T; Bellini J; Battista V; Florence JM; Schara U; Schuler PM; Wahbi K; Aloysius A; Bash RO; Beroud C; Bertini E; Bushby K; Cohn RD; Connolly AM; Deconinck N; Desguerre I; Eagle M; Estournet-Mathiaud B; Ferreiro A; Fujak A; Goemans N; Iannaccone ST; Jouinot P; Main M; Melacini P; Mueller-Felber W; Muntoni F; Nelson LL; Rahbek J; Quijano-Roy S; Sewry C; Storhaug K; Simonds A; Tseng B; Vajsar J; Vianello A; Zeller R Description An account of the resource Congenital muscular dystrophies are a group of rare neuromuscular disorders with a wide spectrum of clinical phenotypes. Recent advances in understanding the molecular pathogenesis of congenital muscular dystrophy have enabled better diagnosis. However, medical care for patients with congenital muscular dystrophy remains very diverse. Advances in many areas of medical technology have not been adopted in clinical practice. The International Standard of Care Committee for Congenital Muscular Dystrophy was established to identify current care issues, review literature for evidence-based practice, and achieve consensus on care recommendations in 7 areas: diagnosis, neurology, pulmonology, orthopedics/rehabilitation, gastroenterology/ nutrition/speech/oral care, cardiology, and palliative care. To achieve consensus on the care recommendations, 2 separate online surveys were conducted to poll opinions from experts in the field and from congenital muscular dystrophy families. The final consensus was achieved in a 3-day workshop conducted in Brussels, Belgium, in November 2009. This consensus statement describes the care recommendations from this committee. 2010 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/0883073810381924" target="_blank" rel="noreferrer">10.1177/0883073810381924</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). Type The nature or genre of the resource Journal Article 2010 Aloysius A Backlog Bash RO Battista V Bellini J Beroud C Bertini E Bonnemann CG Bushby K Cohn RD Connolly AM Deconinck N Desguerre I Eagle M Estournet-Mathiaud B Ferreiro A Florence JM Fujak A Goemans N Iannaccone ST Jouinot P Journal Article Journal of Child Neurology Main M Melacini P Mueller-Felber W Muntoni F Nelson LL Quijano-Roy S Rahbek J Rutkowski A Schara U Schuler PM Sejersen T Sewry C Simonds A Storhaug K Tseng B Vajsar J Vianello A Wahbi K Wang CH Zeller R 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 October 2016 List 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 Nurses' Experiences Of Spiritual Communication With Seriously Iii Children. Publisher An entity responsible for making the resource available Journal Of Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2016 Subject The topic of the resource Methods; Nurse's Role; Pediatric Nursing; Child; Adolescent; Health Promotion; Nursing & Ancillary Services; Electronic Books; Local; Children's Health; Health & Fitness Palliative Care Nursing Issues; Pediatric Palliative Care; Spirituality Creator An entity primarily responsible for making the resource Ferrell B; Wittenberg E; Battista V; Walker G Description An account of the resource The goal of this study was to explore nurse experiences in communication with children about spiritual topics in order to develop training in this area. BACKGROUND: Although spiritual care is essential in pediatric palliative care, few providers receive training about communication with ill children about spirituality. METHODS: Researchers developed a brief survey to prompt nurses to reflect on pediatric palliative care experiences that included spiritual discussions. Nurses attending training courses voluntarily submitted stories. Qualitative data were thematically analyzed by members of the research team, consisting of two researchers with expertise in palliative care, spirituality, and communication and two expert pediatric palliative care clinicians. RESULTS: Nurses' spiritual conversations with children revealed that children question God and the reason for their illness, have a desire to talk about the afterlife as a way of understanding their limited lifespan, and to share descriptions of an afterlife, in these cases described as heaven. Nurses conveyed the importance of being present and engaging in spiritual communication with children. DISCUSSION: Communication training is needed and should prepare providers to respond to a child's spiritual questioning, assist parents when the child initiates discussion about the afterlife, and help parent and child understand the spiritual meaning of their illness. Chaplains serve as spiritual care experts and can help train nurses to screen for spiritual distress, have greater competence in spiritual communication, and to collaborate with chaplains in care. Quality palliative care is incomplete without attention to spiritual care. Identifier An unambiguous reference to the resource within a given context DOI: 10.1089/jpm.2016.0138 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). 2016 Adolescent Battista V Child Children's Health Electronic Books Ferrell B Health & Fitness Health Promotion Journal of Palliative Medicine Local Methods Nurse's Role Nursing & Ancillary Services October 2016 List Palliative Care Nursing Issues Pediatric Nursing Pediatric Palliative Care Spirituality Walker G Wittenberg E 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 March 2016 List 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 Finding Their Voice: Advance Care Planning For Children And Young Adults Without Decision-making Capacity. Publisher An entity responsible for making the resource available Journal Of Pain And Symptom Management Date A point or period of time associated with an event in the lifecycle of the resource 2016 Creator An entity primarily responsible for making the resource Downing A; Dombrowski D; Battista V Description An account of the resource Objectives •Explore their own personal struggles and be able to list five barriers frequently cited when considering advance care planning (ACP) for children with complex chronic conditions who cannot communicate their wishes. •Apply newly acquired concepts in ACP to their patients with complex chronic conditions and limited communication abilities. Children with severe lifelong medical complexity, resulting from a variety of causes, including birth trauma or prematurity, congenital malformations, or any number of genetic or metabolic conditions, are a growing population within children’s hospitals. Many lack the ability to communicate their wishes and fears, thus relying on others to make their most important medical decisions. Palliative care professionals may be consulted at various stages along their unpredictable trajectory. While both clinicians and families recognize the need for advance care planning (ACP) in this population, several unique characteristics of this group make such planning complex and challenging. With audience participation, we will discuss both the evidence-based and collectively identified unique medical and psychosocial aspects of this population that are often barriers to conducting advance care planning. We will then introduce a framework for ACP that has specific application to this unique population. This framework will address the cited barriers, draw upon the recognized strengths of these children and their families, and tend to the specific needs these families have expressed. Key concepts will include recognizing and addressing provider bias, promoting a focus on goals and values, early introduction and consistent usage of a benefit versus burden framework for decision-making, recognizing that this process is almost never black and white, and the importance of building trusting relationships and having ongoing conversations. We will use cases to further illustrate how this framework can be applied to some of our most challenging consults. In particular, we will explore the consideration of tracheostomy placement for chronic respiratory failure. As a group, we will practice applying these newly acquired concepts to a scenario that is both common to, and especially challenging for, many pediatric palliative care programs. Identifier An unambiguous reference to the resource within a given context DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.284 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). 2016 Battista V Dombrowski D Downing A Journal of Pain and Symptom Management March 2016 List