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Interdisciplinary Pediatric Palliative Care最新文献

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Practical Aspects of Palliative Care Communication 姑息治疗沟通的实践方面
Interdisciplinary Pediatric Palliative Care Pub Date : 2021-06-01 DOI: 10.1093/med/9780190090012.003.0013
Lindsay Ragsdale, T. October, Caitlin M. Scanlon
{"title":"Practical Aspects of Palliative Care Communication","authors":"Lindsay Ragsdale, T. October, Caitlin M. Scanlon","doi":"10.1093/med/9780190090012.003.0013","DOIUrl":"https://doi.org/10.1093/med/9780190090012.003.0013","url":null,"abstract":"Pediatric palliative care clinicians coordinate communication among clinicians, balance providing information to families with the emotional support they need to feel comforted in those decisions, and adapt their mode of communication to “match” the developmental age and capacity of the child, the dynamics of the family, and their cultural and religious dimensions. This chapter explores the importance of communication and provides useful tools to tackle these conversations empathetically. It also delves into communication about goals of care, prognosis, and managing hope. Clinicians can utilize these practical frameworks to improve communication and establish therapeutic alliances with patients and their families.","PeriodicalId":157381,"journal":{"name":"Interdisciplinary Pediatric Palliative Care","volume":"38 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"128842368","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Gastrointestinal Symptoms 胃肠道症状
Interdisciplinary Pediatric Palliative Care Pub Date : 2021-06-01 DOI: 10.1093/med/9780190090012.003.0025
Kevin Madden, M. Mahon
{"title":"Gastrointestinal Symptoms","authors":"Kevin Madden, M. Mahon","doi":"10.1093/med/9780190090012.003.0025","DOIUrl":"https://doi.org/10.1093/med/9780190090012.003.0025","url":null,"abstract":"Gastrointestinal symptoms include a broad spectrum of clinical conditions, ranging from mildly irritating (aphthous ulcers) to functionally disabling (constipation and mucositis). Symptoms can originate anywhere along the gastrointestinal tract from the mouth to the rectum. Children may suffer greatly, as many of the medications used to treat their symptoms have only limited efficacy. Furthermore, suffering takes many forms, not just physical, and the intrinsic interdisciplinary nature of pediatric palliative care lends itself to attending to the psychological and sometimes existential and spiritual suffering that can accompany disabling gastrointestinal symptoms. This chapter will provide a comprehensive, evidence-based, and interdisciplinary approach to gastrointestinal symptoms that afflict seriously ill children. The assessment and treatment of these symptoms is always undertaken within the context of the child’s and family’s goals of care.","PeriodicalId":157381,"journal":{"name":"Interdisciplinary Pediatric Palliative Care","volume":"64 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"115798821","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Anticipatory Grief and Bereavement 预期悲伤和丧亲之痛
Interdisciplinary Pediatric Palliative Care Pub Date : 2021-06-01 DOI: 10.1093/med/9780190090012.003.0015
J. Snaman, T. Akard, Sue E. Morris, L. Wiener
{"title":"Anticipatory Grief and Bereavement","authors":"J. Snaman, T. Akard, Sue E. Morris, L. Wiener","doi":"10.1093/med/9780190090012.003.0015","DOIUrl":"https://doi.org/10.1093/med/9780190090012.003.0015","url":null,"abstract":"Grief is a universal process among children with serious illness and their parents and family members. The grieving process often begins at time of diagnosis, continues throughout the illness, and into bereavement. The death of a child is a devastating event that results in grief that is long-lasting. Parents, siblings, extended family members, friends, members of the care team, and the wider community are all affected by the loss and may require support. Grief can result in different psychological, spiritual, or physical manifestations, and there are many cultural, spiritual, and/or religious familial aspects to grief that must be considered. Interdisciplinary care providers should be aware of the factors associated with anticipatory grief and bereavement as well as supportive interventions that can be provided throughout the disease process, at the end of life, and following the child’s death.","PeriodicalId":157381,"journal":{"name":"Interdisciplinary Pediatric Palliative Care","volume":"67 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"123012946","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Language of Pediatric Palliative Care 儿童姑息治疗的语言
Interdisciplinary Pediatric Palliative Care Pub Date : 2021-06-01 DOI: 10.1016/B978-1-4377-0262-0.00001-3
J. Wolfe, P. Hinds, Barbara M. Sourkes
{"title":"The Language of Pediatric Palliative Care","authors":"J. Wolfe, P. Hinds, Barbara M. Sourkes","doi":"10.1016/B978-1-4377-0262-0.00001-3","DOIUrl":"https://doi.org/10.1016/B978-1-4377-0262-0.00001-3","url":null,"abstract":"","PeriodicalId":157381,"journal":{"name":"Interdisciplinary Pediatric Palliative Care","volume":"74 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"130898138","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 6
Easing Distress When Death Is Near 当死亡临近时减轻痛苦
Interdisciplinary Pediatric Palliative Care Pub Date : 2021-06-01 DOI: 10.1093/med/9780190090012.003.0027
D. Lotstein, R. Rusch
{"title":"Easing Distress When Death Is Near","authors":"D. Lotstein, R. Rusch","doi":"10.1093/med/9780190090012.003.0027","DOIUrl":"https://doi.org/10.1093/med/9780190090012.003.0027","url":null,"abstract":"The death of a child is an intense, deeply personal experience for the child and his or her family and for everyone involved. Anticipatory guidance regarding the various aspects of end-of-life care can be helpful for families but requires compassion and exquisite communication skills to match the appropriate level of information with the patient and family’s state of coping. This chapter provides guidance on how to manage and address both common and special symptoms and circumstances that may arise during the dying process. Clinician efforts to optimize a child’s comfort at end of life relieves suffering and may also have long-lasting effects for grieving family members. Thoughtful attention to actions after a child’s death can promote both family and staff resilience.","PeriodicalId":157381,"journal":{"name":"Interdisciplinary Pediatric Palliative Care","volume":"6 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"133396653","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Respiratory Symptoms 呼吸道症状
Interdisciplinary Pediatric Palliative Care Pub Date : 2021-06-01 DOI: 10.1093/med/9780190090012.003.0024
R. Sharpe, M. Jordan, Raymond Barfield, S. Gall, M. Bidegain, K. Lakis, Renee M Bartle, Emily Layok
{"title":"Respiratory Symptoms","authors":"R. Sharpe, M. Jordan, Raymond Barfield, S. Gall, M. Bidegain, K. Lakis, Renee M Bartle, Emily Layok","doi":"10.1093/med/9780190090012.003.0024","DOIUrl":"https://doi.org/10.1093/med/9780190090012.003.0024","url":null,"abstract":"For many, breathing is a routine and almost unthought-of necessity. For others, breathing can be challenging or even impossible to do on one’s own. The primary job of the respiratory system is the intake of oxygen and the removal of carbon dioxide. This seemingly simple act requires healthy lungs, conducting airways, and an intact central nervous system to control the muscles of respirations, which form a semi-rigid bellow around the lungs and attach to the bones of the chest wall. For the respiratory system to function well, breathing must be organized, with each part of the system performing optimally. If any portion of the respiratory system has pathologies, breathing can become difficult, painful, and eventually cease to occur without assistance.","PeriodicalId":157381,"journal":{"name":"Interdisciplinary Pediatric Palliative Care","volume":"1 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"132105748","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Advanced Heart Disease 晚期心脏病
Interdisciplinary Pediatric Palliative Care Pub Date : 2021-06-01 DOI: 10.1016/B978-1-4377-0262-0.00040-2
E. Blume, A. Green
{"title":"Advanced Heart Disease","authors":"E. Blume, A. Green","doi":"10.1016/B978-1-4377-0262-0.00040-2","DOIUrl":"https://doi.org/10.1016/B978-1-4377-0262-0.00040-2","url":null,"abstract":"","PeriodicalId":157381,"journal":{"name":"Interdisciplinary Pediatric Palliative Care","volume":"183 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"114152129","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 4
Team Relationships 团队关系
Interdisciplinary Pediatric Palliative Care Pub Date : 2021-06-01 DOI: 10.1093/med/9780190090012.003.0011
Michelle Brown, Jody Chrastek, Kris Catrine
{"title":"Team Relationships","authors":"Michelle Brown, Jody Chrastek, Kris Catrine","doi":"10.1093/med/9780190090012.003.0011","DOIUrl":"https://doi.org/10.1093/med/9780190090012.003.0011","url":null,"abstract":"Palliative care is a team endeavor. Through teamwork, palliative care uniquely tailors care plans to the needs of children impacted by complex illnesses and their families. The creation, growth, and sustainability of highly functional teams are not automatic. Team relationships are influenced by the inherent structure and composition of team members, and optimal team functioning requires attention to team dynamics. In this chapter, core team processes that support team functioning are defined (e.g., cognition, collaboration, coaching, communication) and their bidirectional impact on relational states (e.g., cohesion, trust, and psychological safety) are described. Practical strategies for supporting the health and well-being of the team and its individual members are presented. Common challenges of interdisciplinary teams are discussed.","PeriodicalId":157381,"journal":{"name":"Interdisciplinary Pediatric Palliative Care","volume":"478 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"123230986","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Primary and Acquired Immune Deficiency Disorders 原发性和获得性免疫缺陷疾病
Interdisciplinary Pediatric Palliative Care Pub Date : 2021-06-01 DOI: 10.1093/med/9780190090012.003.0035
W. L. Koay, N. Rakhmanina, Megan L. Wilkins, Sarah Matthews, A. Doshi
{"title":"Primary and Acquired Immune Deficiency Disorders","authors":"W. L. Koay, N. Rakhmanina, Megan L. Wilkins, Sarah Matthews, A. Doshi","doi":"10.1093/med/9780190090012.003.0035","DOIUrl":"https://doi.org/10.1093/med/9780190090012.003.0035","url":null,"abstract":"Children and adolescents living with primary or secondary immunodeficiencies often have an unpredictable prognosis and benefit from palliative care as a standard part of their regular care. This chapter illustrates the challenges faced by children and adolescents living with HIV, which have parallels to issues encountered by children with other immunodeficiencies. The nuances of palliative care management for children living with HIV are detailed according to various aspects of care: physical; structure and process of care of patients and families; psychological and psychiatric; social, cultural, spiritual, religious, and existential; ethical and legal, and care of the patient nearing the end of life.","PeriodicalId":157381,"journal":{"name":"Interdisciplinary Pediatric Palliative Care","volume":"101 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"126833949","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Interdisciplinary Education and Training 跨学科教育与培训
Interdisciplinary Pediatric Palliative Care Pub Date : 2021-06-01 DOI: 10.1093/med/9780190090012.003.0007
K. Brock, Jennifer M. Hwang, Marsha Joselow, B. Lord, Janet M. Duncan, D. Lafond
{"title":"Interdisciplinary Education and Training","authors":"K. Brock, Jennifer M. Hwang, Marsha Joselow, B. Lord, Janet M. Duncan, D. Lafond","doi":"10.1093/med/9780190090012.003.0007","DOIUrl":"https://doi.org/10.1093/med/9780190090012.003.0007","url":null,"abstract":"This chapter delves into interdisciplinary education and training in pediatric palliative care, both its basis in the underlying principles of adult education, updates in interdisciplinary education, and its creative initiatives specific to the field. The chapter explores principles of adult education, principles of interdisciplinary education as a framework for pediatric palliative care, the unique pedagogy of pediatric palliative care, creative models of training, parents and families as teachers, and the benefits and challenges of interdisciplinary pediatric palliative education. In order to optimally tailor the teaching approach, the following factors must be considered: the background, perspective, and experience of the intended audience; the skills they bring; and the most likely and/or most significant gaps in their knowledge.","PeriodicalId":157381,"journal":{"name":"Interdisciplinary Pediatric Palliative Care","volume":"20 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"126977979","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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