Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0012
V. Dussel, B. Jones
In this chapter, we will focus on the importance of caring for the family of a child with a life-limiting condition (LLC) or life-threatening condition as a unit, each of the family members being integral to the well-being and care of the others. We recognize that the family unit itself is embedded within a wider context including the health and social care system, and more broadly within its society and culture. We discuss the concept of family, exploring the impact of having a child with an LLC, and how families adjust to this. We then expand on considerations about how to offer effective and timely support and help. We have included parents’ narratives with the aim of adding depth to the discussion, and in recognition of the truth of families’ own experiences.
{"title":"Impact on the family","authors":"V. Dussel, B. Jones","doi":"10.1093/med/9780198821311.003.0012","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0012","url":null,"abstract":"In this chapter, we will focus on the importance of caring for the family of a child with a life-limiting condition (LLC) or life-threatening condition as a unit, each of the family members being integral to the well-being and care of the others. We recognize that the family unit itself is embedded within a wider context including the health and social care system, and more broadly within its society and culture. We discuss the concept of family, exploring the impact of having a child with an LLC, and how families adjust to this. We then expand on considerations about how to offer effective and timely support and help. We have included parents’ narratives with the aim of adding depth to the discussion, and in recognition of the truth of families’ own experiences.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"38 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"116245684","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}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0031
M. Grunauer, Jenny L Hynson
Care planning is not merely another task on the checklist for providing children’s palliative care (CPC), but rather can be regarded as the foundation for accomplishing nearly all other CPC goals. Based on continuous communication and holistic assessment, care planning is a means to facilitating patient-family quality of life, not an end in and of itself. This CPC task is important because it enables practitioners to celebrate patient-family autonomy, improve the delivery of care according to their wishes and values, and avoid uncertainty. Care planning is also foundational to other activities which are pivotal to quality of life, including communication, acceptance, and trust.
{"title":"Planning care","authors":"M. Grunauer, Jenny L Hynson","doi":"10.1093/med/9780198821311.003.0031","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0031","url":null,"abstract":"Care planning is not merely another task on the checklist for providing children’s palliative care (CPC), but rather can be regarded as the foundation for accomplishing nearly all other CPC goals. Based on continuous communication and holistic assessment, care planning is a means to facilitating patient-family quality of life, not an end in and of itself. This CPC task is important because it enables practitioners to celebrate patient-family autonomy, improve the delivery of care according to their wishes and values, and avoid uncertainty. Care planning is also foundational to other activities which are pivotal to quality of life, including communication, acceptance, and trust.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"89 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"124853953","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}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0005
E. Brown, M. Muckaden, N. Mndende
Culture, religion, and spiritual beliefs can profoundly affect the ways in which families cope with caring for a child living with a life-shortening illness. These patterns and belief systems may also impact how families navigate decisions and make sense of death and dying. People’s attitudes and beliefs affect the way in which they respond to others, particularly those whose views and lifestyles are different from their own. To be effective, caring professions need to be aware of their own social mores, prejudices, and worldview. Cultural sensitivity is required to comprehensively support a child and family especially at the end of life (EOL). The chapter starts by defining key concepts and then describes some common worldviews and religions with particular relevance to children’s palliative care and ends with an example from the traditional perspective from southern Africa.
{"title":"Culture, spirituality, religion, and ritual","authors":"E. Brown, M. Muckaden, N. Mndende","doi":"10.1093/med/9780198821311.003.0005","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0005","url":null,"abstract":"Culture, religion, and spiritual beliefs can profoundly affect the ways in which families cope with caring for a child living with a life-shortening illness. These patterns and belief systems may also impact how families navigate decisions and make sense of death and dying. People’s attitudes and beliefs affect the way in which they respond to others, particularly those whose views and lifestyles are different from their own. To be effective, caring professions need to be aware of their own social mores, prejudices, and worldview. Cultural sensitivity is required to comprehensively support a child and family especially at the end of life (EOL). The chapter starts by defining key concepts and then describes some common worldviews and religions with particular relevance to children’s palliative care and ends with an example from the traditional perspective from southern Africa.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"52 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"131654664","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}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0026
C. Hlela, R. Albertyn, M. Meiring
The skin is the body’s largest organ. Primary skin conditions may be life-threatening and include congenital disorders such as epidermolysis bullosa (EB) and acquired conditions such as large burn wounds. The skin may also be the organ where distressing symptoms of other systemic diseases manifest, including physical symptoms such as pain or pruritus, and psychological or emotional issues such as impacts on self-esteem. Such symptoms are hard to recognize and treat and there is a paucity of robust evidence-based treatment strategies. Nonetheless, a palliative care approach can make a significant difference to the distress experienced by these children and provide support to their families.
{"title":"Skin symptoms","authors":"C. Hlela, R. Albertyn, M. Meiring","doi":"10.1093/med/9780198821311.003.0026","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0026","url":null,"abstract":"The skin is the body’s largest organ. Primary skin conditions may be life-threatening and include congenital disorders such as epidermolysis bullosa (EB) and acquired conditions such as large burn wounds. The skin may also be the organ where distressing symptoms of other systemic diseases manifest, including physical symptoms such as pain or pruritus, and psychological or emotional issues such as impacts on self-esteem. Such symptoms are hard to recognize and treat and there is a paucity of robust evidence-based treatment strategies. Nonetheless, a palliative care approach can make a significant difference to the distress experienced by these children and provide support to their families.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"121 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"121540006","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}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0017
S. Friedrichsdorf
Pain in hospitalized children is very common, under-recognized, and under-treated. In paediatric patients the pain might be not be caused by the underlying serious medical conditions alone, but also by their frequent exposure to painful procedures (e.g. bone marrow aspirations, dressing changes, lumbar punctures, blood draws, injections, etc.). Advanced paediatric pain treatment for children with serious illness usually requires multimodal analgesia, which may include medications from different analgesic classes, procedural interventions, rehabilitation, psychological, and/or integrative (‘non-pharmacological’) therapies that usually act synergistically for more effective paediatric pain control with fewer side effects than any single analgesic or modality.
{"title":"Multimodal analgesia in paediatric palliative care","authors":"S. Friedrichsdorf","doi":"10.1093/med/9780198821311.003.0017","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0017","url":null,"abstract":"Pain in hospitalized children is very common, under-recognized, and under-treated. In paediatric patients the pain might be not be caused by the underlying serious medical conditions alone, but also by their frequent exposure to painful procedures (e.g. bone marrow aspirations, dressing changes, lumbar punctures, blood draws, injections, etc.). Advanced paediatric pain treatment for children with serious illness usually requires multimodal analgesia, which may include medications from different analgesic classes, procedural interventions, rehabilitation, psychological, and/or integrative (‘non-pharmacological’) therapies that usually act synergistically for more effective paediatric pain control with fewer side effects than any single analgesic or modality.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"53 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"124202911","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}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0003
Robert C. Macauley, R. Hain
Clinicians working in paediatric palliative care encounter many of the same practical ethical quandaries that face colleagues working in the adult specialty. While the underlying moral principles must be the same, their application to children is often distinctive and ethics is an illustration that ‘children are not small adults’. The key ethical test is the child’s interests; the benefits that an intervention will offer relative to its harms. Establishing them, however, is often not straightforward, and there is a risk that interests become abstracted from the context of a caring relationship that defines the state of being a child. In this chapter we consider a number of specific challenges in paediatric ethics at the end of life: the source of authority in medical decision making, ethics of research in children, collusion (especially in older children and young adults), the principle of double effect (PDE), and euthanasia.
{"title":"‘Children are not small adults’—the distinctiveness of ethics in children","authors":"Robert C. Macauley, R. Hain","doi":"10.1093/med/9780198821311.003.0003","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0003","url":null,"abstract":"Clinicians working in paediatric palliative care encounter many of the same practical ethical quandaries that face colleagues working in the adult specialty. While the underlying moral principles must be the same, their application to children is often distinctive and ethics is an illustration that ‘children are not small adults’. The key ethical test is the child’s interests; the benefits that an intervention will offer relative to its harms. Establishing them, however, is often not straightforward, and there is a risk that interests become abstracted from the context of a caring relationship that defines the state of being a child. In this chapter we consider a number of specific challenges in paediatric ethics at the end of life: the source of authority in medical decision making, ethics of research in children, collusion (especially in older children and young adults), the principle of double effect (PDE), and euthanasia.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"106 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"128116743","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}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0007
M. Bluebond-Langner, I. Clemente
Death is very much a part of the everyday thoughts of children. It is part of the games they play, the stories they hear, and the videos they watch. Sadly, for some children it is also part of their everyday lives—their lived experience in the face of a life-threatening illness, war, violence, or natural disaster. In this chapter we explore well and ill children’s views of death demonstrating how children’s views of death, like those of adults, are multi-dimensional and encompass not only the physical, but also the metaphysical, social, and emotional aspects. Attention is given to how children express their awareness and understanding of death and the implications for engaging children in discussions of death and dying.
{"title":"Children’s views of death","authors":"M. Bluebond-Langner, I. Clemente","doi":"10.1093/med/9780198821311.003.0007","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0007","url":null,"abstract":"Death is very much a part of the everyday thoughts of children. It is part of the games they play, the stories they hear, and the videos they watch. Sadly, for some children it is also part of their everyday lives—their lived experience in the face of a life-threatening illness, war, violence, or natural disaster. In this chapter we explore well and ill children’s views of death demonstrating how children’s views of death, like those of adults, are multi-dimensional and encompass not only the physical, but also the metaphysical, social, and emotional aspects. Attention is given to how children express their awareness and understanding of death and the implications for engaging children in discussions of death and dying.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"22 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"117041759","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}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0028
M. Meiring, T. Arscott-Mills
Whilst non-communicable diseases provided the impetus for the development of children’s palliative care (CPC) in the developed world, it was a single communicable illness human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) that was the catalyst for the development of many CPC programmes in the developing world. Whilst considerable gains have been made in preventing and controlling paediatric AIDS globally, there is still benefit to an integrated palliative care approach to the care of these children and especially for those living in countries without access to anti-retrovirals. Furthermore, there are many other communicable diseases associated with significant health-related suffering in children that could benefit from palliative care. This chapter proposes grouping these diseases using the well-known Association for Children with Terminal Conditions (ACT) categorization and discusses examples of important communicable diseases in each category. The need for improved CPC as part of the humanitarian response to acute communicable disease outbreaks such as Ebola virus disease is also explored.
{"title":"Palliative care for children with communicable illnesses","authors":"M. Meiring, T. Arscott-Mills","doi":"10.1093/med/9780198821311.003.0028","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0028","url":null,"abstract":"Whilst non-communicable diseases provided the impetus for the development of children’s palliative care (CPC) in the developed world, it was a single communicable illness human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) that was the catalyst for the development of many CPC programmes in the developing world. Whilst considerable gains have been made in preventing and controlling paediatric AIDS globally, there is still benefit to an integrated palliative care approach to the care of these children and especially for those living in countries without access to anti-retrovirals. Furthermore, there are many other communicable diseases associated with significant health-related suffering in children that could benefit from palliative care. This chapter proposes grouping these diseases using the well-known Association for Children with Terminal Conditions (ACT) categorization and discusses examples of important communicable diseases in each category. The need for improved CPC as part of the humanitarian response to acute communicable disease outbreaks such as Ebola virus disease is also explored.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"1 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"129584764","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}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0036
F. Rawlinson, M. Meiring
While education of specialists in paediatric palliative care (PC) and palliative medicine remains an important priority, it is also imperative to upscale education efforts for other healthcare professionals, policy makers, and governments in order to integrate PC into the care of an estimated 21 million children globally. PC education should be available to all child-focused healthcare professionals and beyond in order to correct misconceptions that threaten to impede delivery of adequate PC to children. That can be done through advocacy and through mass media, as well as through targeted educational initiatives based on an understanding of adult education theory. Novel online and other teaching strategies offer the opportunity to reach unprecedented numbers of people.
{"title":"Education","authors":"F. Rawlinson, M. Meiring","doi":"10.1093/med/9780198821311.003.0036","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0036","url":null,"abstract":"While education of specialists in paediatric palliative care (PC) and palliative medicine remains an important priority, it is also imperative to upscale education efforts for other healthcare professionals, policy makers, and governments in order to integrate PC into the care of an estimated 21 million children globally. PC education should be available to all child-focused healthcare professionals and beyond in order to correct misconceptions that threaten to impede delivery of adequate PC to children. That can be done through advocacy and through mass media, as well as through targeted educational initiatives based on an understanding of adult education theory. Novel online and other teaching strategies offer the opportunity to reach unprecedented numbers of people.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"7 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"133090615","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}
Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0013
Sarah Portnoy, Lori Ives-Baine
Most families do not expect to bury a child. Adults expect to die before their children, certainly before their grandchildren. Yet every year parents face the enormous grief of having their child die and many young people experience the death of their sibling. This chapter discusses the impact of a child’s death on families, adults, and children, and describes interventions, based on theory, that may help bereaved families. Although unimaginable, most children and their families will cope with the death of a close family member, especially if they can express their feelings and thoughts, if the family can talk about what is happening and about their memories of the deceased, and if they have the opportunity to meet others who have been bereaved.
{"title":"Bereavement","authors":"Sarah Portnoy, Lori Ives-Baine","doi":"10.1093/med/9780198821311.003.0013","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0013","url":null,"abstract":"Most families do not expect to bury a child. Adults expect to die before their children, certainly before their grandchildren. Yet every year parents face the enormous grief of having their child die and many young people experience the death of their sibling. This chapter discusses the impact of a child’s death on families, adults, and children, and describes interventions, based on theory, that may help bereaved families. Although unimaginable, most children and their families will cope with the death of a close family member, especially if they can express their feelings and thoughts, if the family can talk about what is happening and about their memories of the deceased, and if they have the opportunity to meet others who have been bereaved.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"51 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"121026093","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}
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