Pub Date : 2021-07-01DOI: 10.1093/med/9780198821311.003.0010
Amy Volans, Emma Brown
Creative activities involving play, art, storytelling, and music are all normal and natural ways for children to interact with the world around them, and they can be powerful resources for facilitating and enhancing communication. They offer a forum for children to express their feelings, concerns, and questions through creative means, as well as providing a basis for exploring their experiences further. Given that children’s normal activities and outlets for expression of their feelings are often disrupted or reduced as a result of their illness or disability, it is even more important for creative activities and therapies to be provided and encouraged in all contexts of the child’s life, in hospital, hospice, school, and at home. These activities can be individually focused, family centred, or provided through group activities. In this chapter we review the clinical application and effectiveness of these creative therapeutic techniques in promoting expression and communication with children.
{"title":"Children expressing themselves","authors":"Amy Volans, Emma Brown","doi":"10.1093/med/9780198821311.003.0010","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0010","url":null,"abstract":"Creative activities involving play, art, storytelling, and music are all normal and natural ways for children to interact with the world around them, and they can be powerful resources for facilitating and enhancing communication. They offer a forum for children to express their feelings, concerns, and questions through creative means, as well as providing a basis for exploring their experiences further. Given that children’s normal activities and outlets for expression of their feelings are often disrupted or reduced as a result of their illness or disability, it is even more important for creative activities and therapies to be provided and encouraged in all contexts of the child’s life, in hospital, hospice, school, and at home. These activities can be individually focused, family centred, or provided through group activities. In this chapter we review the clinical application and effectiveness of these creative therapeutic techniques in promoting expression and communication with children.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"26 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":"121915896","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/9780198821311.003.0002
J. Mack, B. Sisk
Communication is the framework that supports the relationship between the clinician, the child, and their family, and this relationship is itself therapeutic. Through communication, clinicians learn who the child and family members are as unique human beings and have the opportunity to develop relationships that form the context of care and decision-making over time. Although the words that are used in conversations are important, and suggested approaches are described, it is through authentic human dialogue that the bonds are developed with patients and their families, which constitute the true significance of this work. Through self-awareness and understanding of the barriers we all use to avoid difficult conversations; solid and often profound relationships can be established so that both clinicians and families can find meaning in even the most difficult circumstances. Indeed, for many who work with these children and their families, such relationships are one of the main reasons why they continue to choose this work.
{"title":"Communication","authors":"J. Mack, B. Sisk","doi":"10.1093/med/9780198821311.003.0002","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0002","url":null,"abstract":"Communication is the framework that supports the relationship between the clinician, the child, and their family, and this relationship is itself therapeutic. Through communication, clinicians learn who the child and family members are as unique human beings and have the opportunity to develop relationships that form the context of care and decision-making over time. Although the words that are used in conversations are important, and suggested approaches are described, it is through authentic human dialogue that the bonds are developed with patients and their families, which constitute the true significance of this work. Through self-awareness and understanding of the barriers we all use to avoid difficult conversations; solid and often profound relationships can be established so that both clinicians and families can find meaning in even the most difficult circumstances. Indeed, for many who work with these children and their families, such relationships are one of the main reasons why they continue to choose this work.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"3 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":"132728337","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/9780198821311.003.0015
A. Gray, J. Riddin, R. Hain
Using medication in children’s palliative care (CPC) is fraught with difficulties as a result of an insufficient evidence-base and a lack of child friendly formulations, however this cannot be a reason not to intervene and allow unnecessary suffering. A lack of access in some countries to even essential medicines such as opioids is an infringement of the rights of the child to pain relief and needs urgent redress. Often, the only reasonable option is to extrapolate from adult data and to proceed rationally on the basis of what the prescriber knows about the available drug, the individual child, and the likely effects of their disease. Alternative routes for administration of medicines in children who are no longer able to use the oral route, such as the trans- and sub-cutaneous and buccal route mean symptom control can be provided at home and until end of life.
{"title":"Using medication in children’s palliative care","authors":"A. Gray, J. Riddin, R. Hain","doi":"10.1093/med/9780198821311.003.0015","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0015","url":null,"abstract":"Using medication in children’s palliative care (CPC) is fraught with difficulties as a result of an insufficient evidence-base and a lack of child friendly formulations, however this cannot be a reason not to intervene and allow unnecessary suffering. A lack of access in some countries to even essential medicines such as opioids is an infringement of the rights of the child to pain relief and needs urgent redress. Often, the only reasonable option is to extrapolate from adult data and to proceed rationally on the basis of what the prescriber knows about the available drug, the individual child, and the likely effects of their disease. Alternative routes for administration of medicines in children who are no longer able to use the oral route, such as the trans- and sub-cutaneous and buccal route mean symptom control can be provided at home and until end of life.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"76 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":"133535388","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/9780198821311.003.0006
N. Contro, Janelle M. Zimmerman
The assessment of the child and family in paediatric palliative care is a blend of art and science. It is a continuous rather than finite process that if done well helps solidify the therapeutic relationship between the family and the provider. In this chapter we discuss both the components of assessment and the ways in which it lays the foundation for treatment. First, we examine the fundamentals of assessment and identify how various concepts apply through case discussion. Next we review and integrate data from a large-scale study that highlighted themes identified by families which they considered critical components of assessment and quality care.
{"title":"Assessment of the child and family","authors":"N. Contro, Janelle M. Zimmerman","doi":"10.1093/med/9780198821311.003.0006","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0006","url":null,"abstract":"The assessment of the child and family in paediatric palliative care is a blend of art and science. It is a continuous rather than finite process that if done well helps solidify the therapeutic relationship between the family and the provider. In this chapter we discuss both the components of assessment and the ways in which it lays the foundation for treatment. First, we examine the fundamentals of assessment and identify how various concepts apply through case discussion. Next we review and integrate data from a large-scale study that highlighted themes identified by families which they considered critical components of assessment and quality care.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"40 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":"133834285","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/9780198821311.003.0019
R. McCulloch, C. Berde
A child in pain needs not only appropriate medical treatment, but specific attention to psychosocial, cultural, and spiritual issues in order to allow meaningful exploration of wider fears or concerns. Management requires a collaborative, multimodal approach; optimal use of non-pharmacological strategies, targeted analgesic pharmacotherapy, and if necessary, specific interventional therapies. Although managing pain is only one aspect of providing palliative care for children, however, it is a core task. The experience of severe pain demands an individual’s whole attention, leaving little chance of addressing wider psychosocial or existential concerns while it remains uncontrolled. Difficult pain is a highly prevalent symptom among children with life-limiting conditions (LLC). It is complex, usually multifactorial and multifaceted. It is encountered in every dimension; the physical perception and experience of pain will be dictated by the existential and psychosocial context in which it occurs for the individual child.
{"title":"Difficult pain","authors":"R. McCulloch, C. Berde","doi":"10.1093/med/9780198821311.003.0019","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0019","url":null,"abstract":"A child in pain needs not only appropriate medical treatment, but specific attention to psychosocial, cultural, and spiritual issues in order to allow meaningful exploration of wider fears or concerns. Management requires a collaborative, multimodal approach; optimal use of non-pharmacological strategies, targeted analgesic pharmacotherapy, and if necessary, specific interventional therapies. Although managing pain is only one aspect of providing palliative care for children, however, it is a core task. The experience of severe pain demands an individual’s whole attention, leaving little chance of addressing wider psychosocial or existential concerns while it remains uncontrolled. Difficult pain is a highly prevalent symptom among children with life-limiting conditions (LLC). It is complex, usually multifactorial and multifaceted. It is encountered in every dimension; the physical perception and experience of pain will be dictated by the existential and psychosocial context in which it occurs for the individual child.","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":"124346038","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/9780198821311.003.0038
H. Siden, K. Widger
In this chapter, we outline why research in paediatric palliative care (PPC) is essential, describe the challenges to conducting research in children and families affected by life-threatening conditions (LTCs), and propose strategies for overcoming these obstacles in order to advance the field and ensure provision of optimal and scientifically sound care for our patients and their loved ones. The significant challenges to PPC research outlined in this chapter are daunting but not insurmountable. All healthcare professionals are encouraged to engage in or support systematic, rigorous research efforts to develop a more evidence-based approach to PPC.
{"title":"Research in children’s palliative care","authors":"H. Siden, K. Widger","doi":"10.1093/med/9780198821311.003.0038","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0038","url":null,"abstract":"In this chapter, we outline why research in paediatric palliative care (PPC) is essential, describe the challenges to conducting research in children and families affected by life-threatening conditions (LTCs), and propose strategies for overcoming these obstacles in order to advance the field and ensure provision of optimal and scientifically sound care for our patients and their loved ones. The significant challenges to PPC research outlined in this chapter are daunting but not insurmountable. All healthcare professionals are encouraged to engage in or support systematic, rigorous research efforts to develop a more evidence-based approach to PPC.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"37 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":"116118639","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/9780198821311.003.0018
Manuel Rigal, R. Martino, R. Hain
Opioids constitute the most important group of drugs in the management of pain in palliative care. Morphine is still the drug of choice and considered the ‘gold standard’ in opioid prescribing in children. Other opioids have some pharmacological differences that may confer some advantages (and disadvantages) in specific types of pain or particular clinical scenarios. Opioid prescription must follow World Health Organization (WHO) approach to pain management principles. Understanding the rationale behind these principles improves the achievement of an individualized prescription to ease the pain of a particular patient. Opioid initiation, titration, breakthrough pain handling, and opioid substitution are essential aspects of opioid management. Their knowledge constitutes a core skill in paediatric palliative pain medicine.
{"title":"Opioids and the World Health Organization pain ladder","authors":"Manuel Rigal, R. Martino, R. Hain","doi":"10.1093/med/9780198821311.003.0018","DOIUrl":"https://doi.org/10.1093/med/9780198821311.003.0018","url":null,"abstract":"Opioids constitute the most important group of drugs in the management of pain in palliative care. Morphine is still the drug of choice and considered the ‘gold standard’ in opioid prescribing in children. Other opioids have some pharmacological differences that may confer some advantages (and disadvantages) in specific types of pain or particular clinical scenarios. Opioid prescription must follow World Health Organization (WHO) approach to pain management principles. Understanding the rationale behind these principles improves the achievement of an individualized prescription to ease the pain of a particular patient. Opioid initiation, titration, breakthrough pain handling, and opioid substitution are essential aspects of opioid management. Their knowledge constitutes a core skill in paediatric palliative pain medicine.","PeriodicalId":383589,"journal":{"name":"Oxford Textbook of Palliative Care for Children","volume":"58 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":"132132828","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/9780198821311.003.0012
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: 10.5040/9781350138889.ch-009
J. Aldridge, Patrick M. Carragher
In this chapter we consider what is meant by a team and by team-working. We explore the issues that arise in teams in paediatric palliative care and some of the key challenges of team working. We look at ways of tackling these challenges, so teams develop and function in healthy and creative ways, and so members are able to recognize when there are difficulties and have ways to resolve them, irrespective of the particular composition of the team. Teams are often used to address these various aspects of care, as no one professional can cover all aspects, or meet the diverse range of needs of these children and their families.
{"title":"Teamwork","authors":"J. Aldridge, Patrick M. Carragher","doi":"10.5040/9781350138889.ch-009","DOIUrl":"https://doi.org/10.5040/9781350138889.ch-009","url":null,"abstract":"In this chapter we consider what is meant by a team and by team-working. We explore the issues that arise in teams in paediatric palliative care and some of the key challenges of team working. We look at ways of tackling these challenges, so teams develop and function in healthy and creative ways, and so members are able to recognize when there are difficulties and have ways to resolve them, irrespective of the particular composition of the team. Teams are often used to address these various aspects of care, as no one professional can cover all aspects, or meet the diverse range of needs of these children and their families.","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":"122834628","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}
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