Paediatric end-of-life care at home
Humans; Child; Home Care Services; Terminal Care; Palliative Care/px [Psychology]; Parents/px [Psychology]; Terminal Care/px [Psychology]; Hospice Care; Terminal Care; Death
BACKGROUND: A terminally ill child should have the possibility to be at home with their family during the end of life. Provision of care from primary care nurses (PCNs) is crucial, but no model exists on how specialised paediatric palliative care teams (SPPCTs) support the PCNs to perform this task., AIM: To investigate how PCNs evaluated a shared care model between a SPPCT and PCNs in paediatric end-of-life care., METHOD: A 23-item questionnaire was distributed to PCNs involved in care of 14 terminally ill children in November 2019 and January 2020. Descriptive statistics were used., FINDINGS: A total of 20 questionnaires were returned from nurses who agreed/completely agreed that an introductory meeting made them better prepared (78.9%) to deal with the death of a child in their care, cooperating with family members (70.6%) and dealing with own emotions (73.7%). A total of 69.2% felt the meeting helped coping with parents' pressure and 88.9% stated that the trajectory changed how they saw themselves involved in future paediatric palliative care., CONCLUSION: The shared care model was evaluated positively. Clear agreements and specialist support were prerequisites for good trajectories at the end of life. Further research is needed to investigate if the shared care model optimises palliative care and security in relation to child and family.
Larsen SHK; Bording I; Bjergegaard M; Buchreitz J; Mouritzen BT; Brix L; Jespersen BA; Neergaard MA
International Journal of Palliative Nursing
2023
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).
<a href="http://doi.org/10.12968/ijpn.2023.29.6.282" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2023.29.6.282</a>
Paediatric palliative care for the generalist
Hospice and Palliative Care Nursing; Hospice Care; Terminal Care; Child; Humans; Palliative Care; Palliative Care/px [Psychology]; Terminal Care/px [Psychology]; Terminally Ill/px [Psychology]
Palliative care has been defined as 'the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life'. Unfortunately, palliative care and especially paediatric palliative care remain a neglected area of medicine and are widely misunderstood, with few healthcare providers having any formal training in South Africa. To relieve health-related suffering, healthcare providers must understand that the field is not limited to end-of-life care for the terminally ill, and holistic care (physical, emotional, social and spiritual) should commence at the time of diagnosis of a serious illness. It is imperative that all healthcare providers develop the knowledge and skills to provide this essential care across all levels of care and disciplines. The article aims to raise awareness and show how to practically implement palliative care through case studies.
Ambler JF; Bell CH
South African Family Practice
2023
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).
<a href="http://doi.org/10.4102/safp.v65i1.5722" target="_blank" rel="noreferrer noopener">10.4102/safp.v65i1.5722</a>
Face and Content Validity, Acceptability, Feasibility, and Implementability of a Novel Outcome Measure for Children with Life-Limiting or Life-Threatening Illness in Three Sub-Saharan African Countries
Hospice and Palliative Care Nursing; Palliative Care; Adolescent; Child; Feasibility Studies; Humans; Outcome Assessment Health Care; Palliative Care/px [Psychology]; Surveys and Questionnaires; Uganda
BACKGROUND: The Children's Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can comprehend and respond to its items. AIM: To determine the face and content validity, comprehensiveness, comprehensibility, acceptability and feasibility, and implementability of the C-POS. DESIGN: Mixed methods (1) Content validation: mapping C-POS items onto an evidence-based framework from prior evidence; (2) Comprehensiveness, comprehensibility, acceptability feasibility, and implementability: qualitative in-depth and cognitive interviews with a purposive sample of children and young people (n = 6), family caregivers (n = 16), and health workers (n = 12) recruited from tertiary facilities in Kenya, South Africa, and Uganda. RESULTS: (1) C-POS content mapped on to palliative care domains for (a) children (i.e. physical (e.g. symptoms), social (e.g. play/socialize), psychological (e.g. happy)) and (b) families (i.e. psychological (e.g. worry), social (e.g. information), and help and advice). (2) C-POS items were well understood by children and their caregivers, acceptable, and relevant. Completion time was a median of 10 min, patients/caregivers and health workers reported that using the C-POS improved their communication with children and young people. Methodological and content issues included: (i) conceptual gap in the spiritual/existential domain; (ii) further consideration of developmental, age-appropriate items in the social and psychological domains, and (iii) linguistic complexity and difficulty in proxy rating. CONCLUSION: C-POS items capture the core symptoms and concerns that matter to children and their families. C-POS is feasible, comprehensible, and acceptable for use in clinical settings; areas for further development and improvement are identified.
Namisango E; Bristowe K; Murtagh FE; Downing J; Powell RA; Atieno M; Abas M; Ali Z; Luyirika EB; Meiring M; Mwangi-Powell FN; Higginson IJ; Harding R
Palliative Medicine
2022
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).
<a href="http://doi.org/10.1177/02692163221099583" target="_blank" rel="noreferrer noopener">10.1177/02692163221099583</a>
Existential experience of children with cancer under palliative care
Child; Existentialism; Female; Humans; Male; Neoplasms/co [Complications]; Neoplasms/px [Psychology]; Nursing Theory; Palliative Care/mt [Methods]; Palliative Care/px [Psychology]; Palliative Care/st [Standards]; Qualitative Research
OBJECTIVE: To understand the existential experience of children with cancer under Palliative Care from the Humanistic Nursing Theory's point of view. METHOD: This is a field and qualitative research, in which eleven children participated, supported by the Support Centre for Children with Cancer in Paraiba State. To collect data it was used the Story Drawing Procedure. The data were qualitatively analyzed based on Humanistic Nursing Theory. RESULTS: From the analysis of the empirical study's subject, the following thematic categories have emerged: children experiencing fear, sadness, anguish and insecurity in the face of their diagnosis and children experiencing fear of their family falling apart because of the possibility of dying. CONCLUSION: It is fundamental the participation of nurses in the Palliative Care to the children with cancer in order to strengthen the trust between the children and the professional to have the relationship of dialogue as central axis.
Franca J; Costa S; Lopes M E L; Nobrega M; Batista P S S; Oliveira R C
Revista Brasileira de Enfermagem
2018
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).
<a href="http://doi.org/10.1590/0034-7167-2016-0493" target="_blank" rel="noreferrer noopener">10.1590/0034-7167-2016-0493</a>
Individualised advance care planning in children with life-limiting conditions
Child Health Services/og [Organization & Administration]; Palliative Care/og [Organization & Administration]; Netherlands; Palliative Care/st [Standards]; Quality of Health Care; Male; Practice Guidelines as Topic; Advance Care Planning/og [Organization & Administration]; Parents/px [Psychology]; Child; Humans; Palliative Care/px [Psychology]; Female; Attitude to Health; Pilot Projects; Advance Care Planning/st [Standards]; Child Health Services/st [Standards]; Evidence-Based Medicine/mt [Methods]; Patient Satisfaction/sn [Statistics & Numerical Data]
INTRODUCTION: In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to develop a functional individualised paediatric palliative care plan (IPPCP) that covers physical, psychological, spiritual and social functioning, with great emphasis on the guideline's recommendations, advance care planning and patients' and parents' preferences and desires. METHODS: A Dutch working group (28 individuals) with a strong multidisciplinary character developed a draft IPPCP, which was piloted retrospectively and prospectively. In the pilots we completed, the IPPCPs for patients who were recently diagnosed with a life-threatening or life-limiting condition and evaluated completeness, usability and user-friendliness. RESULTS: The final IPPCP comprised five domains: (1) IPPCP data, (2) basics, (3) social, (4) psychosocial and spiritual and (5) physical care. Each domain covered various components. In both pilots, the IPPCP was considered a comprehensive document that covered all areas of paediatric palliative care and was experienced as an improvement to the present situation. However, the current form was regarded to lack user-friendliness. CONCLUSION: We propose a set of essential components of a comprehensive IPPCP for paediatric palliative care with extra attention for advance care planning and anticipatory action. Patients' and parents' preferences and desires are included next to the recommendations of the evidence-based guideline 'Palliative care for children'.
Loeffen EAH; Tissing WJE; Schuiling-Otten MA; de Kruiff CC; Kremer L C M; Verhagen AA; Pediatric Palliative Care-Individualized Care Plan Working Group
Archives of Disease in Childhood
2018
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).
<a href="http://doi.org/10.1136/archdischild-2017-312731" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-312731</a>
Identifying domains of quality of life in children with cancer undergoing palliative care: A qualitative study with professionals
Adaptation Psychological; Middle Aged; Male; Humans; Palliative Care/mt [Methods]; Adult; Qualitative Research; Neoplasms/px [Psychology]; Female; Quality of Life/px [Psychology]; Palliative Care/px [Psychology]; Quebec; Pediatrics/st [Standards]; Health Personnel/px [Psychology]; Perception; Pediatrics/ma [Manpower]
OBJECTIVE: The goal of pediatric palliative care (PPC) is to maintain the quality of life (QoL) of children whose lives are threatened. However, there are sparse scientific data on the domains of QoL in this particular context, and no measurement strategies are available. The present study aims to describe the domains of QoL in the context of PPC in oncology, according to the perceptions of professional caregivers. METHOD: Semistructured interviews were conducted with a random sample of 20 professional caregivers from the Division of Hematology/Oncology at Le Centre Hospitalier Universitaire Sainte-Justine (Montreal, Canada). The caregivers were asked about their perceptions about the QoL of the children they have cared for in this context. The data were analyzed using inductive thematic content analysis. RESULTS: The analysis allowed us to identify seven domains of QoL: "physical comfort," "alleviation of psychological suffering," "fun and the present moment," "sense of control," "feeling valued and appreciated," "feeling that life goes on," and "meaningful social relationships." SIGNIFICANCE OF RESULTS: Caregivers recount the regard that should be accorded to maintaining well-being and a sense of fun, as well as fostering the child's abilities, taking account of the progression of the disease, and to fulfilling his or her needs, especially social ones. Our results also demonstrate that all domains were positively referred to by professional caregivers. The data from our study will lead to better assessment of QoL according to the trajectory of a child with advanced cancer while undergoing PPC.
Avoine-Blondin J; Parent V; Lahaye M; Humbert N; Duval M; Sultan S
Palliative & Supportive Care
2017
<a href="http://doi.org/%2010.1017/S1478951516001048" target="_blank" rel="noreferrer noopener">10.1017/S1478951516001048</a>
Maintaining Integrity: How Nurses Navigate Boundaries in Pediatric Palliative Care
Humans; Professional-Family Relations; Palliative Care/px [Psychology]; Nursing Staff; Child; Female; Male; Nursing Methodology Research; Qualitative Research; Nursing; Palliative Care/mt [Methods]; Nurse-Patient Relations; Nursing Staff; Hospital/px [Psychology]; Critical Care Nursing/mt [Methods]; Nurse's Role/px [Psychology]; Hospital/og [Organization & Administration]; Philosophy
PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families., DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses from four practice sites was interviewed using a semi-structured interview guide., RESULTS: Nurses across the sites engaged in a process of maintaining integrity whereby they integrated two competing, yet essential, aspects of their nursing role - behaving professionally and connecting personally. When skillful in both aspects, nurses were satisfied that they provided high-quality, family-centered care to children and families within a clearly defined therapeutic relationship. At times, tension existed between these two aspects and nurses attempted to mitigate the tension. Unsuccessful mitigation attempts led to compromised integrity characterized by specific behavioral and emotional indicators. Successfully mitigating the tension with strategies that prioritized their own needs and healing, nurses eventually restored integrity. Maintaining integrity involved a continuous effort to preserve completeness of both oneself and one's nursing practice., CONCLUSIONS: Study findings provide a theoretical conceptualization to describe the process nurses use in navigating boundaries and contribute to an understanding for how this specialized area of care impacts health care providers., PRACTICE IMPLICATIONS: Work environments can better address the challenges of navigating boundaries through offering resources and support for nurses' emotional responses to caring for seriously ill children. Future research can further refine and expand the theoretical conceptualization of maintaining integrity presented in this paper and its potential applicability to other nursing specialties.Copyright © 2017 Elsevier Inc. All rights reserved.
Erikson A; Davies B
Journal of Pediatric Nursing
2017
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).
<a href="http://doi.org/10.1016/j.pedn.2017.02.031" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2017.02.031</a>
Advance directives in the context of end-of-life palliative care.
Humans; United States; Palliative Care/st [Standards]; Advance Directives/lj [Legislation & Jurisprudence]; Advance Directive Adherence; Patient Preference; Terminally Ill/px [Psychology]; Advance Directives/ec [Economics]; Advance Directives/px [Psychology]; Palliative Care/ec [Economics]; Palliative Care/px [Psychology]
PURPOSE OF REVIEW: To review the definition of advanced directive, understand the implications for the patient, family and healthcare team, and address the obstacles involved in the implementation., RECENT FINDINGS: Advanced directives propose a model of healthcare based on patient preferences. Although there is sufficient evidence related to their usefulness, various factors are known to affect the use of advanced directives. Therefore, rules need to be established in order to optimize the implementation process., SUMMARY: An advanced directive is a legal document based on the principle of autonomy that expresses the desire of the patient in relation to different medical treatments when the patient is unable to make those decisions. The advanced directives are represented in three formats: Living Will, Appointment of a Healthcare Proxy and Legal Status of Preferences. The uses of advanced directives have an impact not only on the patients and their families, but also on the healthcare team. Despite their utility being well known, there are several general barriers that affect implementation, as well as factors related to characteristics of each study population.
2013
Perez Marisa del V; Macchi MJ; Agranatti AF
Current Opinion In Supportive And Palliative Care
2013
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Journal Article
<a href="http://doi.org/10.1097/spc.0000000000000007" target="_blank" rel="noreferrer">10.1097/spc.0000000000000007</a>
Healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions: a qualitative systematic review protocol
Communication; Critical Illness/px [Psychology]; Palliative Care/px [Psychology]; Parents/px [Psychology]; Professional-Family Relations; adolescent; Adult; Child; Female; Health Personnel/px [Psychology]; Humans; infant; Male; Newborn; Preschool; Qualitative Research; Young Adult
REVIEW QUESTION/OBJECTIVE: The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions. For the purposes of this review, "healthcare users" will be taken to include children who have life-limiting conditions and their families. The question to be addressed is:What are healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions? BACKGROUND: The prospect of the death of a child from an incurable medical condition is harrowing, yet finding a way to discuss this prospect is crucial to maximize the quality of life for such children and their families. High-quality communication is well recognized as a core skill health care professionals need to maximize the quality of care they provide. This skill is valued by service users, who consistently rate it as one of the highest priorities for the care they receive. Evidence suggests, however, that healthcare professionals can feel ill-equipped or uncomfortable communicating with and about such children. Therefore, it is important to understand what represents high-quality communication and what is involved in accomplishing this within pediatric palliative care.In recent decades there has been an increased focus on providing palliative care for children who have life-limiting conditions. These are conditions for which no cure is available and for which the probable outcome is premature death. Palliative care may also be appropriate for children who have life-threatening conditions; these are conditions where there is not only a high probability of premature death but also a chance of long-term survival into adulthood Although pediatric palliative care is underpinned by the same philosophy as adult palliative care, children who have life-limiting conditions and their families have particular needs that distinguish them from users of adult palliative care. For example, at a physical level children are more likely than adults to have non-malignant conditions that follow trajectories in which children oscillate between feeling relatively well and acutely unwell. The social dynamic of their care is also radically different, particularly given the role of parents or guardians in making surrogate decisions about their child's care. Such factors warrant considering pediatric palliative care as distinct from palliative care more generally.Although the particular circumstances of children who have life-limiting conditions have led to development of pediatric palliative care, the particular provisions of this care differs among countries. One aspect of variation is the age range of patients. Pediatric palliative care is usually provided to neonates, infants, children, adolescents and young adults, but international variations in the definitions of these age ranges, particularly for adolescents and young adults, means pediatric palliative care is provided to different age groups in different countries. This review therefore adopts a pragmatic rather than an age-based definition of a pediatric palliative care, considering all studies relating to service users who are being cared for by pediatric rather than adult healthcare services.In catering for the unique needs of children who have life-limiting conditions and their families, pediatric palliative care aims to achieve pain and symptom management, enhanced dignity and quality of life, and psychosocial and spiritual care. It also seeks to incorporate care for patients' broader families and facilitating access to appropriate services and support. High-quality communication is crucial for achieving these aims. It enables healthcare users and providers to make decisions that underpin the care that is provided and the quality of the life that is possible for patients and their families.Although both users and providers recognize the value of high-quality communication with and about children who have life-limiting conditions, this does not mean that these stakeholders necessarily share the same perspective of what constitutes high-quality communication and the best way of accomplishing this. Focusing on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions, the present review will explore the subjective impact of professionals' communication on the people for whom they provide care. It may be necessary to consider a range of contextual factors to understand healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions. For instance, age, developmental stage, cognitive capacity, emotional and social strengths, and family dynamics can influence a child's level of involvement in discussions about their condition and care.13,28,29,35 Although there are factors that appear more consistent across the range of pediatric palliative care users, such as parents' preferences for being treated by healthcare professionals as partners in making decisions about the care of their child, there is not always such consistency.29 Nor is it clear whether such findings can be generalized across different cultural contexts.13,36 In appraising existing research, this systematic review will therefore consider the relationship between the context of individual studies and their reported findings. Background The primary aim of this review is to identify, appraise and synthesize existing qualitative evidence of healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions. The review will consider relevant details of these findings, particularly whether factors like age are relevant for understanding particular experiences of communication. An outcome of this review will be the identification of best available qualitative evidence that can be used to inform professional practice, as well as an identification of priorities for future research in pediatric palliative care. Background A preliminary search in MEDLINE and CINAHL found primary studies exploring healthcare users' experiences of aspects of communicating with healthcare professionals about children who have life-limiting conditions. A search was also conducted for existing systematic reviews in PubMed, CINAHL, EMBASE, PsycINFO, the Cochrane Database of Systematic Reviews, the JBI Database of Systematic Reviews and Implementation Reports, and PROSPERO. No systematic reviews on this topic were found.
2015-11
Ekberg S; Bradford N; Herbert A; Danby S; Yates P
Jbi Database Of Systematic Reviews And Implementation Reports
2015
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).
<a href="http://doi.org/10.11124/jbisrir-2015-2413" target="_blank" rel="noreferrer">10.11124/jbisrir-2015-2413</a>
Palliative care in neonatal neurology: robust support for infants, families and clinicians
Infant; Nervous System Diseases; Palliative Care; Parents/px [Psychology]; Clinical Decision-Making/es [Ethics]; Diseases; Diseases/px [Psychology]; Diseases/th [Therapy]; Humans; infant; Intensive Care Units; Neonatal/og [Organization & Administration]; Nervous System Diseases/px [Psychology]; Nervous System Diseases/th [Therapy]; Neurology/mt [Methods]; Newborn; Palliative Care/es [Ethics]; Palliative Care/mt [Methods]; Palliative Care/px [Psychology]; social support
Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly available, we must consider how to intentionally incorporate palliative care principles into the care of infants with neurological injury. Here, we review data regarding neonatal symptom management, prognostic uncertainty, decision making, communication and parental support for neonatal neurology patients and their families.
2015
Lemmon ME; Bidegain M; Boss RD
Journal Of Perinatology
2015
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).
<a href="http://doi.org/10.1038/jp.2015.188" target="_blank" rel="noreferrer">10.1038/jp.2015.188</a>
Pediatric palliative care.
Child; Humans; Professional-Family Relations; Interdisciplinary Communication; Resuscitation Orders; Adaptation; Psychological; patient care team; Psychological; Stress; DNAR; Child welfare; hospice care; Analgesics/tu [Therapeutic Use]; Palliative Care/px [Psychology]; decision making; Pain/dt [Drug Therapy]; Pediatrics/td [Trends]; Quality of Life/px [Psychology]; Analgesics/ae [Adverse Effects]; Constipation/ci [Chemically Induced]; Nausea/ci [Chemically Induced]; Vomiting/ci [Chemically Induced]
Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. In addition, for even the child with the most unpredictable disease, there are predictable times in this child's life when the child, family, and care team will be suffering in ways that can be mitigated by specific interventions. Rather than defining pediatric palliative care in terms of a patient base, severity of disease, or even a general philosophy of care, palliative care can best be understood as a specific set of tasks directed at mitigating suffering. By understanding these tasks; learning to identify predictable times and settings of suffering; and learning to collaborate with multidisciplinary specialists, use communication skills, and identify clinical resources, the pediatrician can more effectively support children with life-threatening illnesses and their families. In this article, we define palliative care as a focus of care integrated in all phases of life and as a set of interventions aimed at easing suffering associated with life-threatening conditions. We detail an approach to these interventions and discuss how they can be implemented by the pediatrician with the support of specialists in hospice and palliative medicine. We discuss common and predictable times of suffering when these interventions become effective ways to treat suffering and improve quality of life. Finally, we discuss those situations that pediatricians most commonly and intensely interface with palliative care-the care of the child with complex, chronic conditions and severe neurologic impairment (SNI).Copyright 2010 Mosby, Inc. All rights reserved.
2010
Klick JC; Hauer JM
Current Problems In Pediatric And Adolescent Health Care
2010
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).
Journal Article
<a href="http://doi.org/10.1016/j.cppeds.2010.05.001" target="_blank" rel="noreferrer">10.1016/j.cppeds.2010.05.001</a>
The use of pediatric advance directives: a tool for palliative care physicians.
Child; Humans; United States; Personal Autonomy; decision making; DNAR; Palliative Care/es [Ethics]; Palliative Care/og [Organization & Administration]; Advance Care Planning/es [Ethics]; Right to Die/lj [Legislation & Jurisprudence]; Advance Care Planning/og [Organization & Administration]; Palliative Care/px [Psychology]; Child Advocacy; Pediatrics/og [Organization & Administration]; Child Advocacy/es [Ethics]; Child Advocacy/lj [Legislation & Jurisprudence]; Child Advocacy/px [Psychology]; Minors/lj [Legislation & Jurisprudence]; Minors/px [Psychology]; Parental Consent/es [Ethics]; Parental Consent/lj [Legislation & Jurisprudence]; Parental Consent/px [Psychology]; Patient Participation/lj [Legislation & Jurisprudence]; Patient Participation/px [Psychology]; Pediatrics/es [Ethics]; Right to Die/es [Ethics]
Although laws such as the Patient Self-Determination Act encourage individuals to address their end-of-life treatment preferences using advance directives, the wishes of children have traditionally been ignored or, perhaps even worse, overruled. Given that there is a substantial body of research indicating that children are capable of making mature decisions when faced with terminal illness, the author proposes granting minors, especially older minors, the right to participate in making end-of-life decisions. Children who complete advance directives benefit in multiple ways. Adopting this approach could benefit patients by demonstrating respect for patient autonomy and informing parents and providers that the minor may be ready to stop aggressive treatment.
2008
Zinner SE
The American Journal Of Hospice & Palliative Care
2008
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).
Journal Article
<a href="http://doi.org/10.1177/1049909108322294" target="_blank" rel="noreferrer">10.1177/1049909108322294</a>
The reflections you get': an exploration of body image and cachexia.
Female; Humans; Male; England; Attitude to Health; Interpersonal Relations; Prognosis; Questionnaires; Aged; Middle Aged; Health Services Needs and Demand; Qualitative Research; Social Isolation; Holistic Health; Spirituality; Nursing Methodology Research; Body Image; 80 and over; Adaptation; Psychological; social support; Social Behavior; Terminally Ill/px [Psychology]; Narration; Palliative Care/mt [Methods]; Cachexia/et [Etiology]; Neoplasms/co [Complications]; Quality of Life/px [Psychology]; Palliative Care/px [Psychology]; Cachexia/px [Psychology]; N
BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people with advanced cancer, their emotions, relationships and social functioning. DESIGN: qualitative study using face-to-face in-depth interviews of a conversational style. Rich narrative data analysed by thematic content analysis. PARTICIPANTS: 12 participants recruited from two community palliative care teams in south east England. RESULTS: altered body image impacts on other aspects of embodiment: the emotions, spirituality, relationships and social functioning. Lives were restricted and isolated, which was compounded by emotional distancing by carers and health care professionals. Participants discussed their repeated attempts to re-adapt to disruptions of self caused by an altered body image. CONCLUSIONS: the key study implications focus on the need for (i) improved holistic care and support, and advice; (ii) training and awareness raising of care professionals; (iii) further research on the lived experiences of the condition and the development of effective measures of cachexia.
2007
Hinsley R; Hughes R
International Journal Of Palliative Nursing
2007
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).
Journal Article
<a href="http://doi.org/10.12968/ijpn.2007.13.2.23068" target="_blank" rel="noreferrer">10.12968/ijpn.2007.13.2.23068</a>
Attitudes of adolescent cancer survivors toward end-of-life decisions for minors.
Child; Female; Humans; Male; Euthanasia; Netherlands; Truth Disclosure; Sick Role; Right to Die; adolescent; Psychological; DNAR; Attitude to Death; Suicide; Assisted/px [Psychology]; Interview; decision making; Advance Directives; Passive; Palliative Care/px [Psychology]; Terminal Care/px [Psychology]; Neoplasms/px [Psychology]; Minors/px [Psychology]; Survivors/px [Psychology]; Euthanasia/px [Psychology]; Informed Consent/px [Psychology]
OBJECTIVES: The present study aimed to investigate the attitudes of adolescent cancer survivors toward end-of-life decisions with life-shortening effects, including nontreatment decisions (NTDs), intensified alleviation of pain and symptoms (APS), and euthanasia, and the influence of illness experience on these attitudes., METHODS: Adolescent cancer survivors were interviewed with a structured questionnaire using hypothetical case descriptions. The results were compared with a study of 1769 adolescents without experience of chronic illness., RESULTS: Eighty-three adolescents, 11 to 18 years of age, were interviewed. In terminal situations, 70% to 90% found requests for NTDs acceptable, 84% requests for APS, and 57% to 64% requests for euthanasia. Requests for end-of-life decisions were less acceptable in nonterminal situations, where 28% found requests for NTDs acceptable, 39% to 47% requests for APS, and 11% to 21% requests for euthanasia. Frequently cited reasons for holding back physicians from administering a lethal drug to a child were the child not being well informed about his or her condition (92%) and the parents' opinion not being asked (92%). Compared with adolescents without experience with chronic illness, cancer survivors were more accepting toward requests for NTDs and APS in terminal situations., CONCLUSIONS: Adolescent cancer survivors, like other adolescents, want to be involved in medical decision-making at the end of life. They value autonomous decision-making, without excluding parents from the process. The experience of living through a life-threatening illness can alter adolescents' attitudes toward requests for NTDs and APS.
2009
Pousset G; Bilsen J; De Wilde J; Benoit Y; Verlooy J; Bomans A; Deliens L; Mortier F
Pediatrics
2009
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).
Journal Article
<a href="http://doi.org/10.1542/peds.2009-0621" target="_blank" rel="noreferrer">10.1542/peds.2009-0621</a>
Experience in the use of the palliative care outcome scale.
Female; Humans; Male; Great Britain; Adult; Questionnaires; Aged; Middle Aged; Pilot Projects; Cancer Care Facilities; Medical Oncology; quality of life; 80 and over; DNAR; Palliative Care/px [Psychology]; Patient Satisfaction; Treatment Outcome
GOALS OF WORK: The objective of the study is to assess the Palliative Care Outcome Scale (POS) as a potential audit tool within a specialist cancer centre. It also aims to answer the following questions: does the tool identify problem areas and demonstrate changes in quality of life over time? How well do staff and patient ratings correlate?, PATIENTS AND METHODS: The POS questionnaire was piloted at a specialist cancer centre. Thirty consecutive patients admitted to the palliative care wards and ward staff completed questionnaires on admission and twice weekly until discharge or death. A further questionnaire assessed staff attitudes., RESULTS: There was a significant improvement in overall patient POS score at 1 week (days 5-9). Four "symptoms" or issues were scored as being important for our patients: pain, other symptoms, anxiety and patient's perception of family anxiety. These all significantly improved within the first week. At the initial assessment, staff underestimated patients' pain and overestimated problems relating to information giving and patients' ability to share their feelings. There was no significant difference between staff and patient scores after 1 week. The other six areas covered by the tool were less important; this may reflect the patient population seen at our centre. Use of the tool identified areas for staff training and effectively demonstrated improvement in patient care., CONCLUSION: The POS is an outcome measure tool designed to assess physical, psychological, practical and existential aspects of quality of life. It may be useful in identifying problems in individual patients and directing care to address these needs.
2005
Stevens A-M; Gwilliam B; A'hern R; Broadley K; Hardy J
Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer
2005
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).
Journal Article
<a href="http://doi.org/10.1007/s00520-005-0815-6" target="_blank" rel="noreferrer">10.1007/s00520-005-0815-6</a>
Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients.
Female; Humans; Male; Canada; Prognosis; Prospective Studies; Patient-Centered Care; Resuscitation Orders; Cross-Cultural Comparison; Europe; DNAR; Truth Disclosure; Palliative Care/px [Psychology]; Family/px [Psychology]; Physician-Patient Relations; Terminally Ill/px [Psychology]; Attitude of Health Personnel; Neoplasms/px [Psychology]; South America
The subject of communication between palliative care physicians and their patients regarding their diagnosis and prognosis has not been extensively researched. The purpose of this survey was to compare the attitudes and beliefs of palliative care specialists regarding communication with the terminally ill in Europe, South America, and Canada. A sample of palliative care physicians from South America (Argentina and Brazil), French-speaking Europe, and Canada were identified, and posted a questionnaire. Physicians who stated that they practised palliative care at least 30% of their time were considered evaluable as palliative care specialists. Of a total of 272 questionnaires, 228 were returned (84%); and 182/228 (81%) respondents were considered to be palliative care specialists. Palliative care physicians in all three regions believed that cancer patients should be informed of their diagnosis and the terminal nature of their illness. Physicians reported that at least 60% of their patients knew their diagnosis and the terminal stage of their illness in 52% and 24% of cases in South America, and 69% and 38% of cases in Europe, respectively. All physicians agreed that 'do not resuscitate' orders should be present, and should be discussed with the patient in all cases. While 93% of Canadian physicians stated that at least 60% of their patients wanted to know about the terminal stage of their illness, only 18% of South American, and 26% of European physicians said this (P < 0.001). Similar results were found when the physicians were asked the percentage of families who want patients to know the terminal stage of their illness. However, almost all of the physicians agreed that if they had terminal cancer they would like to know. There was a significant association between patient based decision-making and female sex (P = 0.007), older age (P = 0.04), and physicians from Canada and South America (P < 0.001). Finally, in their daily decision making, South American physicians were significantly more likely to support beneficence and justice as compared with autonomy. Canadian physicians were more likely to support autonomy as compared with beneficence. In summary, our findings suggest that there are major regional differences in the attitudes and beliefs of physicians regarding communication at the end of life. More research is badly needed on the attitudes and beliefs of patients, families, and health care professionals in different regions of the world.
2000
Bruera E; Neumann CM; Mazzocato C; Stiefel F; Sala R
Palliative Medicine
2000
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).
Journal Article
<a href="http://doi.org/10.1191/026921600674582192" target="_blank" rel="noreferrer">10.1191/026921600674582192</a>
[Difficulties in communication with parents of pediatric cancer patients during the transition to palliative care]
Attitude Of Health Personnel; Cancer Palliative Therapy; Childhood Cancer; Communication Barrier; Communication Barriers; Critical Illness/nu [nursing]; Palliative Care/mt [methods]; Parental Attitude; Physician-patient Relations; Article; Cancer Mortality; Cancer Patient; Cancer Therapy; Child; Critical Illness/px [psychology]; Disease Management; Dying; Empathy; Female; Human; Humans; Interpersonal Communication; Medical Expert; Oncologist; Palliative Care/px [psychology]; Parent-child Relations; Parents/px [psychology]; Pediatrician; Psychologist; Quality Of Health Care; Self Defense; Structured Interview
INTRODUCTION: Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. AIM: To investigate the timing and manner of communication with parents concerning the introduction of palliative care in pediatric oncology. METHOD: Structured interviews, containing 14 questions, were carried out with physicians working in pediatric oncology (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. RESULTS: Interviews show a tendency of a one-step transition to palliative care following curative therapy. Another expert is usually involved in communication, most likely a psychologist. Regarding communication, there are expressions utilized or avoided, such as expressing clarity, self-defense and empathy. The communication of death and dying was the most contradictory. CONCLUSION: This was the first investigation regarding communication in pediatric palliative care in Hungary. Our results show that a modern perspective of palliative communication is present, but necessitates more time to become entrenched. Orv Hetil. 2017; 158(30): 1175-1181.
Nyiro J; Hauser P; Zorgo S; Hegedus K
Orvosi Hetilap
2017
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).
<a href="http://doi.org/10.1556/650.2017.30815" target="_blank" rel="noreferrer">10.1556/650.2017.30815</a>
Parent Perspectives of Neonatal Intensive Care at the End-of-Life
Intensive Care Neonatal/st [standards]; Palliative Care/mt [methods]; Parents/px [psychology]; Professional-family Relations; Terminal Care/px [psychology]; Adaptation Psychological; Adult; Bereavement; Decision Making; Female; Humans; Infant Newborn; Intensive Care Neonatal/td [trends]; Intensive Care Units Neonatal; Interviews As Topic; Male; Palliative Care/px [psychology]; Perception; Qualitative Research; Stress Psychological; Terminal Care/mt [methods]; United States
This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the primary theme with the following categories: ups and downs of parenting in the NICU, decision-making challenges in the NICU, and parent support. Parents encountered challenges with areas for improvement for end-of-life and palliative care in the NICU. Further research is necessary to understand barriers with integrating palliative care and curative care in the NICU, and how NICU care affects bereavement and coping outcomes after infant death.
Currie ER; Christian BJ; Hinds PS; Perna SJ; Robinson C; Day S; Meneses K
Journal of Pediatric Nursing
2016
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).
10.1016/j.pedn.2016.03.023
Palliative Care In The Nicu And Why Education Matters
Intensive Care Units Neonatal/og [organization & Administration]; Palliative Care; Parents; Emotional Intelligence; Humans; Infant Newborn; Palliative Care/mt [methods]; Palliative Care/px [psychology]; Parents/ed [education]; Parents/px [psychology]; Social Support
Palliative care in the NICU gets a bad rap to the point where it is not even clearly described to families. There is a strong need for education and dispelling the myths that surround this very important type of support.
Discenza D
Neonatal Network - Journal Of Neonatal Nursing
2017
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).
10.1891/0730-0832.36.1.48