"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit
child; terminal care; nursing; chronic disease; male; pain; human; intensive care; pediatric intensive care unit; perception; narrative; article; controlled study; interview; major clinical study; distress syndrome; comfort; cancer patient; quantitative analysis; malignant neoplasm; infant; sedation; memory
Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years. Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.
Broden EG; Hinds PS; Werner-Lin AV; Curley MAQ
Journal of hospice and palliative nursing
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/10.1097/NJH.0000000000000884" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000884</a>
A Concept Analysis of Neonatal Palliative Care in Nursing: Introducing a Dimensional Analysis
concept analysis; dimensional; Neonates; nursing; palliative care
Despite the increasing need for neonatal palliative care, it is not adequately implemented in practice. This analysis aimed to clarify the dimension of the neonatal palliative care concept to increase understanding of the concept to give more insight into clinical practice. Using dimensional analysis methodology, 46 English language papers from 2001-2018 were analyzed. The coding of the literature for the perspective, context, conditions, process, and consequences of the concept was completed. Five dimensions informed the conceptualization of this concept and interrelationships among their themes/sub-themes were presented in the matrix named, "improving quality of life and death". Within the family-centered care perspective and under different conditions/contexts through the processes of neonate's comfort and providing holistic care, the consequences of this care were improving quality of life/a good death. Family-centered care was the fundamental dimension and essential to achieving the consequences. The other dimensions of context, conditions, and processes were also affected by the family's needs, preferences, culture, and expectations. This analysis reinforces that neonatal palliative care is a multidimensional concept. To provide the standard of neonatal palliative care an integrated plan to get together many stakeholders including community, parents, clinical staff, policymakers, insurance authorities, health care systems, and education system is required. All NICUs should have neonatal palliative care-trained nurses and protocols with a family-centered care approach to focus on the quality of life of neonates with life-threatening conditions from diagnosis of disease to death. Regular training and educational courses on neonatal palliative care and family-centered care principles can make nurses more sensitive to their advocacy role.
Banazadeh M; Rafii F
Comprehensive Child and Adolescent Nursing
2020
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<a href="http://doi.org/10.1080/24694193.2020.1783029" target="_blank" rel="noreferrer noopener">10.1080/24694193.2020.1783029</a>
A framework for integrated pediatric palliative care: being with dying
Child; Female; Humans; Male; Palliative Care; patient care team; decision making; Parents; Cooperative Behavior; Goals; Nurse's Role; Pediatric Nursing; Interprofessional Relations; Conflict (Psychology); Holistic Health; Self Care; Self-Assessment; Benchmarking; Leukemia; Philosophy; Uncertainty; Myeloid; quality of life; PedPal Lit; Models; PEDI Study; Acute; Nursing; Organizational
Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges their limited life expectancy and severity of illness. Two case studies of children illustrate different approaches-one that aggressively applies all possible technologies to maximize chances of survival and another that focuses on the patient's overall quality of life and on healing rather than curing. The cases highlight characteristics of an integrated model of palliative care to address clinical, moral, and ethical uncertainties. This model integrates being with doing, provides for developing attunement and presence as capacities for being with children and their parents, and addresses challenges in the healthcare environment. Strategies for integrating palliative care into pediatric practice include listening, fostering respect for the child and parents across the organization, nurturing collaborative connections, managing uncertainty, tolerating ambiguity, making peace with conflict, and committing to self-care. Every pediatric nurse can play a role in making the vision of palliative care a reality integrated into the fabric of pediatric practice.
2005-10
Rushton CH
Journal Of Pediatric Nursing
2005
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Journal Article
<a href="http://doi.org/10.1016/j.pedn.2005.03.003" target="_blank" rel="noreferrer">10.1016/j.pedn.2005.03.003</a>
A prospective study of adverse reactions to the weaning of opioids and benzodiazepines among critically ill children
Analgesics; Nursing; PedPal Lit; Nonparametric; methods; Opioid/administration & dosage/adverse effects; 13-20% for 4-7 days; 8-13% for 8-14 days; 8% for 15-21 days; Adolescent Age Factors; and 2-4% for more t han 21 days of infusions. The authors recommend that the rate of weaning of opioids and benzodiazepines in critically ill children be tailored to the length of time the child received continuous infusions of these agents.; Benzodiazepines/administration & dosage/adverse effects Child Child; Health Care Statistics; Intravenous Intensive Care Units; methods/standards Critical Illness/therapy Drug Administration Schedule Drug Monitoring/; Newborn Infusions; Pediatric Nursing Assessment Nursing Evaluation Research Pediatric Nursing; Preschool Conscious Sedation/adverse effects/methods/nursing Critical Care/; standards Humans Infant Infant; standards Prospective Studies Quality Assurance; Substance Withdrawal Syndrome/diagnosis/etiology/prevention & control Time Factors
2005
Ducharme C; Carnevale FA; Clermont MS; Shea S
Intensive and Critical Care Nursing
2005
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Journal Article
<a href="http://doi.org/10.1016/j.iccn.2004.09.003" target="_blank" rel="noreferrer">10.1016/j.iccn.2004.09.003</a>
A systematic review exploring palliative care for families who are forced migrants
children's palliative care; cultural humility; cultural sensitivity; forced migration; nursing; refugee; systematic review
AIMS: To explore the palliative care experiences of forced migrant children, families, and healthcare professionals (HCPs) highlighting successes, challenges, and associated practice implications. DESIGN: Systematic literature review. DATA SOURCES: The following search engines were searched from 2008 - 2018: Allied and Complementary Medicine Database, Cumulative Index to Nursing and Allied Health, MEDLINE, Embase, ProQuest, Scopus, Psycinfo, and Web of Science. Extensive reference and citation checking were also conducted. REVIEW METHODS: Systematic review followed PRISMA guidelines with prepared PROSPERO registered protocol #CRD42019129200. English language qualitative, quantitative, or mixed methods studies were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). RESULTS: Eighteen studies (reported in 20 articles) met the final inclusion criteria. Most focused on challenges to care provision. Thematic analysis following methods proposed by Braun and Clarke was undertaken. Five themes were identified: (a) divergence of beliefs and expectations; (b) communication; (c) navigating healthcare systems; (d) burdens and coping strategies; and (e) training and knowledge. A compassionate, collaborative approach with mutual respect crossed themes and was linked to high-quality care. CONCLUSION: Forced migrant families have multiple needs including physical and emotional support and help in navigating complex systems. Professional interpreters can ease communication barriers when resourced appropriately. Individualized care is crucial to addressing the intricate mosaic of culture such families present. A cultural sensitivity/insensitivity framework is presented that may help guide future interactions and priorities for those working in children's palliative care. IMPACT: This systematic review explored the international experiences of palliative care for forced migrant families. The findings highlight the plight of families who experience multiple traumas and increased levels of grief and loss through their migration experiences and when caring for a child with a life-limiting condition. This research has potential to have an impact on professionals working with culturally diverse families in all palliative care settings.
Clancy M; Taylor J; Bradbury-Jones C; Phillimore J
Journal of Advanced Nursing
2020
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<a href="http://doi.org/10.1111/jan.14509" target="_blank" rel="noreferrer noopener">10.1111/jan.14509</a>
Animal-assisted Therapy In Pediatric Palliative Care
Alternative Therapies; Chronic Heart-failure; Psychiatric-patients Pediatrics; Animal-assisted Therapy; Hospitalized Children; Pet-therapy; Evidence-based Practice; Dogs; Complementary; Suffering; Intervention; Nursing; Companion Animals; Anxieties; Palliative Care; Cancer-patients
Animal-assisted Therapy; Pediatrics; Palliative Care; Interventions; Suffering; Evidence-based Practice
Animal-assisted therapy is an emerging complementary strategy with an increasing presence in the literature. Limited studies have been conducted with children, particularly those with life-threatening and life-limiting conditions. Although outcomes show promise in decreasing suffering of children receiving palliative care services, more work is needed to validate evidence to support implementation of animal-assisted therapy with this vulnerable population.
M J Gilmer
Nursing Clinics Of North America
2016
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<a href="http://dx.doi.org/10.1016/j.cnur.2016.05.007" target="_blank" rel="noreferrer">http://dx.doi.org/10.1016/j.cnur.2016.05.007</a>
Barriers of palliative care in neonatal intensive care units: Attitude of neonatal nurses in southeast Iran
2017; Attitude; Barriers; Neonatal Intensive Care; Neonatal Intensive Care Units; Neonatal Nurses; Neonatal Palliative Care; Nurses; Nursing; Palliative Care; Southeast Iran
Objective: Neonatal nurses face numerous barriers in providing end-of-life (EOL) care for neonates and their families. Addressing neonatal nurses’ attitudes could provide insight into barriers that impede neonatal palliative care (NPC). This study thus conducted to examine neonatal nurses’ attitude toward barriers in providing NPC in Southeast Iran. Method: In this cross-sectional study, a translated modified version of Neonatal Palliative Care Attitude Scale was used to examine attitudes of 70 nurses toward barriers of palliative care in 3 neonatal intensive care units in Southeast Iran. Results: Findings indicated that overall 42.63% of nurses were strongly agreed or agreed with the proposed barriers in NPC. Among all categories, the highest and the lowest scores belonged to the categories of 'insufficient resources' (3.42 ± 0.65) and 'inappropriate personal and social attitudes' (2.33 ± 0.48), respectively. Neonatal nurses who had less education and study regarding NPC reported the presence of more barriers to NPC in the categories of 'inappropriate organizational culture' and/or 'inadequate nursing proficiency.' Also, younger nurses had more positive attitudes toward the category of inappropriate organizational culture as being a barrier to provision of NPC (4.62). Conclusion: The findings suggest that developing a context-based instrument is required to represent the barrier more precisely. Neonatal palliative care can be improved by establishing a special environment to focus on infants’ EOL care. This establishment requires standard palliative care guidelines and adequate NPC-trained nurses. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Azzizadeh FM; Banazadeh M; Ahmadi JS; Razban F
American Journal Of Hospice & Palliative Medicine
2017
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<a href="http://doi.org/10.1177/1049909115616597" target="_blank" rel="noreferrer">10.1177/1049909115616597</a>
Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation
palliative care; communication; neonatology; prematurity; nursing; Pregnancy; parental perspectives; medical education; twins; perinatal loss; Butterflies; multiple pregnancy; triplets
Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were evaluated with pre- and post-course surveys, questionnaires administered to participants, and audits. Results: In the online Butterfly project (UK; n = 734 participants), all participants reported that the training exceeded or met their expectations, 97% reported they learned new skills, and 48% had already applied them. Participants expressed gratitude in their open-ended answers: "I feel a lot more confident in supporting parents in this situation". In the Ribbon project (workshop for neonatal clinicians, Quebec; n = 242), 97% were satisfied with the training and reported feeling more comfortable caring for bereaved parents. Knowledge improved pre-post training. Audits revealed that 100% of cases were identified on the incubator and the baby's/babies' admission card, all changed rooms after the death of their co-twin/triplet, and all had the name of their co-twin/triplet on the discharge summary. All clinicians (55) knew what the ribbon symbol meant when asked during surprise audits at the bedside. Conclusion: Different educational strategies to optimize communication with families after the perinatal loss of a co-twin are appreciated and have a positive impact.
Boutillier B; Embleton ND; Belanger S; Bigras-Mercier A; Larone Juneau A; Barrington KJ; Janvier A
Children (Basel)
2023
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<a href="http://doi.org/10.3390/children10081407" target="_blank" rel="noreferrer noopener">10.3390/children10081407</a>
CAMHS liaison: supporting care in general paediatric settings
Child; Humans; England; Education; Questionnaires; Nurse's Role; Interprofessional Relations; Organizational Objectives; Hospitals; Nursing Methodology Research; Nursing Evaluation Research; Pediatric; adolescent; PedPal Lit; Models; social support; Nursing; Adolescent Psychiatry; Child Psychiatry; Attitude of Health Personnel; Total Quality Management/organization & administration; Consultants/psychology; Continuing/organization & administration; Continuity of Patient Care/organization & administration; Nurse Clinicians/organization & administration/psychology; Nursing Staff/education/psychology; Pediatric Nursing/education/organization & administration; Psychiatric Nursing/education/organization & administration
Increasing numbers of children and young people with mental health problems are being cared for in general paediatric settings, presenting a challenge to nurses who do not have mental health nursing qualification and experience. A survey of nurses in a children's hospital identified their concerns and attitudes to caring for this client group. On-call nursing support was felt by almost all nurses (87 per cent, n=90) to be the most beneficial aspect of a liaison service, followed by teaching (84 per cent) and individual support with the young person/family (84 per cent). Based on the findings, a project was initiated to improve nursing liaison with CAMHS nurses providing support and advice to general children's nurses. Effective liaison between general paediatric wards and child and adolescent mental health services (CAMHS) can improve care for children and young people with diagnosed mental health problems. However, there is still a gap in addressing the need of the significant numbers of children with physical illness who also have mental health needs.
2006
Watson E
Paediatric Nursing
2006
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Journal Article
Caring for a child with a life limiting condition: The experiences of nurses in an intellectual disability service provider
children; intellectual disability; nursing; qualitative research; life limiting
This study elicited the experiences of nurses caring for children with life-limiting conditions and their family, within a community based intellectual disability service. A qualitative descriptive research approach was adopted where purposeful sampling recruited 10 participants. Data was collected using one to one semi-structured interviews and was subsequently analysed using qualitative thematic content analysis. The findings identified a range of complexities unique to the care of children with life-limiting conditions in the intellectual disability setting. From the findings, it is clear that this is a population of highly skilled nurses who work in a challenging and complex area of practice. Further supports are required in order to meet the practice needs and support the emotional needs of this population of nurses. In doing so, high quality practice within the area will be promoted, thereby ensuring high quality care for the children and families within the disability service.
Connor EO; Corcoran Y
Journal of Intellectual Disabilities
2021
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<a href="http://doi.org/10.1177/17446295211018588" target="_blank" rel="noreferrer noopener">10.1177/17446295211018588</a>
Caring for children with complex needs: staff education and training
Nursing; PedPal Lit; Attitude of Health Personnel Caregivers/education Child Community Health Nursing/educationEducation; Continuing Home Care Services/manpower HumansInservice TrainingLong-Term Care Nursing Staff/education Pediatric Nursing/education Professional-Family Relations
Children who live with medical conditions that were previously considered incompatible with long term survival are often highly dependent on interventions and equipment which would traditionally have required hospitalization. However, it is generally accepted that their social, psychological, emotional and developmental needs are best met at home. One of the many factors that can impede these children from being discharged from hospital is the lack of availability of staff who can provide care and support for them and their families. Increasing the number of staff who are able to provide such support might, therefore, assist in providing for their care needs. This article reports on a study of the perceived education and training needs of staff who care for children with complex needs and their families.
2005
Hewitt-Taylor J
Journal Of Child Health Care
2005
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Journal Article
<a href="http://doi.org/10.1177/1367493505050506" target="_blank" rel="noreferrer">10.1177/1367493505050506</a>
Continuous sedation until death: moral justifications of physicians and nurses--a content analysis of opinion pieces
Humans; Palliative Care; Terminal Care; Deep Sedation; Physicians; Morals; Terminology as Topic; Ethics; Conscious Sedation; Nursing
Continuous sedation until death (CSD), the act of reducing or removing the consciousness of an incurably ill patient until death, often provokes medical-ethical discussions in the opinion sections of medical and nursing journals. A content analysis of opinion pieces in medical and nursing literature was conducted to examine how clinicians define and describe CSD, and how they justify this practice morally. Most publications were written by physicians and published in palliative or general medicine journals. Terminal Sedation and Palliative Sedation are the most frequently used terms to describe CSD. Seventeen definitions with varying content were identified. CSD was found to be morally justified in 73% of the publications using justifications such as Last Resort, Doctrine of Double Effect, Sanctity of Life, Autonomy, and Proportionality. The debate over CSD in the opinion sections of medical and nursing journals lacks uniform terms and definitions, and is profoundly marked by 'charged language', aiming at realizing agreement in attitude towards CSD. Not all of the moral justifications found are equally straightforward. To enable a more effective debate, the terms, definitions and justifications for CSD need to be further clarified.
2013-08
Rys S; Mortier F; Deliens L; Deschepper R; Battin MP; Bilsen J
Medicine, Health Care And Philosophy
2013
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Journal Article
<a href="http://doi.org/10.1007/s11019-012-9444-2" target="_blank" rel="noreferrer">10.1007/s11019-012-9444-2</a>
Contributions of Palliative Care to Pediatric Patient Care
Pediatric oncology; Nursing; Pediatric palliative care
Objectives To provide an overview of pediatric palliative care (PPC) as it relates to children and families living with oncologic disease. Data Sources Journal articles, clinical research reports, clinical guidelines, and national statistics. Conclusion As new treatment protocols become available, the need for simultaneous supportive PPC, including adequate pain and symptom management, is evident. Further research and PPC program development is necessary for adherence to the current recommendation that PPC should be initiated at the time of diagnosis and continue throughout the course of a child's disease. Implications for Nursing Practice Palliative care nursing holds a specific role in the pediatric oncology setting. Registered nurses and advanced practice nurses should be adequately trained in PPC because they are in an optimal role to contribute to interdisciplinary PPC for pediatric oncology patients and their families.
2014-11
Mandac C; Battista V
Seminars In Oncology Nursing
2014
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Journal Article
<a href="http://doi.org/10.1016/j.soncn.2014.08.003" target="_blank" rel="noreferrer">10.1016/j.soncn.2014.08.003</a>
Death of an Infant: Accessing the Voices of Bereaved Mothers to Create Healing
Bereavement; Coping; Death and Dying; Infant; Nursing; Qualitative Study; Women’s Health
AIMS AND OBJECTIVES: To describe the health challenge for mothers whose infants have died and approaches and resources they used to manage the loss. BACKGROUND: The death of an infant is a devastating experience for families. Bereaved mothers have higher rates of mental distress, loneliness and isolation. While some learn to cope, others remain consumed by grief, unable to function, with persistent affective, cognitive, and physical symptoms. DESIGN: Qualitative design guided by Story Theory. METHODS: In-depth, semi-structured interviews were conducted with mothers 13 to 36 months after the death of their infant. Looking at the present, past, and future mothers were asked to describe the health challenge of losing an infant and approaches used to manage the loss. The COREQ checklist was used. RESULTS: These mothers' experiences were captured in six main themes: "Painful aloneness," "Blemished identity," "Burden of being misunderstood," "Being with and being heard," "Being present and building a future," and "Finding meaning in the tragedy." In sharing their stories, mothers identified positive and negative encounters with healthcare professionals following the death of their infant. CONCLUSION: After losing an infant, mothers experience an array of challenges as they move forward. They describe their approaches used to manage the loss. This included a need to be heard, feel supported, and find meaning in the loss as they try to build a new future. Their stories express a need for health care encounters to be healing, allowing mothers to feel cared for and supported on their unique journeys toward a new sense of wellbeing. RELEVANCE TO CLINICAL PRACTICE: In sharing their stories what matters most to these mothers having lost an infant emerged. The study findings can be used to guide nursing practice, incorporated into healthcare providers bereavement training, increase knowledge and build effective communication skills.
Hawthorne DM; Joyner R; Gaucher E; Liehr P
Journal of Clinical Nursing
2020
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<a href="http://doi.org/10.1111/jocn.15542" target="_blank" rel="noreferrer noopener">10.1111/jocn.15542</a>
Development of student competencies for palliative care
Adolescent; Adult; Baccalaureate; Clinical Competence; Colombia; Education; Female; Hospice and Palliative Care Nursing/ed [Education]; Humans; Interviews as Topic; Male; Nursing; Students; Surveys and Questionnaires; Young Adult
AIM: Identify the palliative care learning needs of healthcare students and determine the acceptability of an innovative learning strategy for palliative care named competencia para cuidar en el hogar-paliar (CUIDAR-PALIAR) aimed to increase students' competencies. METHODS: A single-group mixed methods design was used. A questionnaire was designed and semi-structured interviews were used to determine the palliative care competencies of undergraduate students; 90 students participated in the strategy. FINDINGS: The learning needs of students are: approaches to death and loss, how to intervene with the patient's family, understanding of the palliative care context, management of the patient's pain and symptoms and the development of therapeutic communication skills. CONCLUSION: The strategy is highly accepted by students, and statistically significant increases in palliative care were observed before and after the intervention. These preliminary results justify future interventions due to the potential effect of the strategy CUIDAR-PALIAR in the development of competencies for palliative care in undergraduate students.
Carrillo G M; Gomez O J; Diaz L C; Carreno S P
International Journal of Palliative Nursing
2019
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<a href="http://doi.org/10.12968/ijpn.2019.25.4.177" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2019.25.4.177</a>
Development of symptom assessment service at a children's hospice
hospice; symptom assessment; central nervous system; child; clinical article; conference abstract; disability; female; health care personnel; human; male; medical assessment; medical record review; molecular recognition; nursing; patient referral; retrospective study; staff; telephone
Background and aims High symptom burden has been recognised in children with life-limiting conditions (LLC) and symptom assessment and management is a core component of children's palliative care (CPC). A previous audit highlighted a high prevalence of problematic symptoms in children accessing the hospice service prompting the development a symptom management team led by a paedi-atric consultant and CNS in CPC in spring 2016. All children in the earlier audited were in ACT category 3 and 4 and had diagnoses of severe disability with associated complex medical needs. This report aims to describe the development of the service and provide data from the first year's activity. Methods A record of all referrals to the team has been main-tained since its inception. A retrospective chart review was performed and data was collected and recorded on an excel spreadsheet. Data recorded included description of problematic symptoms, team members involved and intervention required. Results Referrals to the team are accepted from nursing and healthcare staff involved in the care of the child. A care pathway, symptom assessment tools and symptoms management plans have been developed. To date 39 children have received support from the team, 7 of the children have died since referral. The CNS, wider nursing and multi-disciplinary team have supported all children referred. Medical assessment has been provided to 30 children. 25 children were offered a short break in the hospice to allow careful evaluation of symptoms using formal symptom assessment tools. All children were provided with a symptom management plan and on-going support, at home, in the hospice or by telephone, individualised according to identified need. Parental and healthcare professional feedback has been positive. Conclusion This report describes the initial establishment of a symptom assessment service in a children's hospice. The service has been developed in recognition of the high burden of problematic symptoms in children with severe disability and complex medical needs. It is anticipated that the service will continue to develop to meet the increasing needs of children with LLCs.
Balfe JM; Cassidy M; Booth A
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-2018-rcpch.421" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-rcpch.421</a>
Discerning differences: gastroesophageal reflux and gastroesophageal reflux disease in infants
Nursing; PedPal Lit; Premature; Diagnosis; Newborn Infant; Diagnosis; Differential Directories Gastroesophageal Reflux; physiology Internet Nursing Assessment%X Gastroesophageal reflux (GER) is a frequently encountered problem in infancy; physiopathology; therapy Health Education Humans Infant Infant
2004
Henry SM
Advances In Neonatal Care
2004
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.adnc.2004.05.006" target="_blank" rel="noreferrer">10.1016/j.adnc.2004.05.006</a>
Do we have the power to create our own future as oncology nurses?
Female; Humans; Male; Leadership; Nurse's Role; Sex Factors; Power (Psychology); Students; Nursing; Oncologic Nursing; Societies; Nursing/psychology
2005
Steele R
Canadian Oncology Nursing Journal
2005
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Journal Article
<a href="http://doi.org/10.5737/1181912x1511520" target="_blank" rel="noreferrer">10.5737/1181912x1511520</a>
Effective strategies to prepare infants and families for home tracheostomy care
Adult; Nursing; PedPal Lit; an overview of the impact of the tracheostomy on normal development; and granulation tissue formation are discussed. Humidification is critical for the infant with a tracheostomy and humidification delivery methods are discussed. Further; bleeding; Family Health Education; Home Nursing/education Humans Infant; infection; mucus plugging; Neonatal Nursing Tracheostomy/education/instrumentation/; such as swallowing and language development; suctioning
2004
Fiske E
Advances In Neonatal Care
2004
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.adnc.2003.11.011" target="_blank" rel="noreferrer">10.1016/j.adnc.2003.11.011</a>
Effects of a Web-Based Pediatric Oncology Legacy Intervention on the Coping of Children With Cancer
BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with recurrent or refractory cancer have been examined only recently, with limited attention to specific effects on children's coping abilities. OBJECTIVE: The purpose of this study was to determine the effects of a digital storytelling-legacy intervention on the adaptive coping of children with recurrent or refractory cancer. METHODS: This study used a 2-arm randomized, waitlist-controlled trial design. A total of 150 children with recurrent or refractory cancer and their parents were recruited via Facebook advertisements. RESULTS: The analysis sample included 92 dyads (35-intervention group, 57-control group). The legacy intervention showed small and statistically nonsignificant effects on primary-control and disengagement coping strategies among children with recurrent or refractory cancer. CONCLUSIONS: Legacy interventions using readily accessible digital storytelling have the potential to enhance the adaptive coping skills among children with recurrent or refractory cancer. Further research should determine how to enhance interventions tailored to this population to optimize the benefits.
Cho E; Dietrich MS; Friedman DL; Gilmer MJ; Gerhardt CA; Given BA; Hendricks-Ferguson VL; Hinds PS; Akard TF
American Journal of Hospice and 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/10.1177/10499091221100809" target="_blank" rel="noreferrer noopener">10.1177/10499091221100809</a>
End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses
Child; Cross-Sectional Studies; Humans; United States; Intensive Care Units; Adult; Attitude of Health Personnel; Medical Staff; Questionnaires; Middle Aged; Attitude to Death; Multivariate Analysis; Hospitals; Analysis of Variance; Child Advocacy; Ethics; Medical; Nursing Staff; Practice; Pediatric; Empirical Approach; Death and Euthanasia; Attitudes; decision making; Health Knowledge; ICU Decision Making; Nursing; Pediatrics/methods; Critical Care/organization & administration/psychology; Hospital/education/psychology; Physician's Practice Patterns/organization & administration; Terminal Care/organization & administration/psychology
OBJECTIVE: To determine the attitudes and practices of pediatric critical care attending physicians and pediatric critical care nurses on end-of-life care. DESIGN: Cross-sectional survey. SETTING: A random sample of clinicians at 31 pediatric hospitals in the United States. MEASUREMENTS AND MAIN RESULTS: The survey was completed by 110/130 (85%) physicians and 92/130 (71%) nurses. The statement that withholding and withdrawing life support is unethical was not endorsed by any of the physicians or nurses. More physicians (78%) than nurses (57%) agreed or strongly agreed that withholding and withdrawing are ethically the same (p < .001). Physicians were more likely than nurses to report that families are well informed about the advantages and limitations of further therapy (99% vs. 89%; p < .003); that ethical issues are discussed well within the team (92% vs. 59%; p < .0003), and that ethical issues are discussed well with the family (91% vs. 79%; p < .0002). On multivariable analyses, fewer years of practice in pediatric critical care was the only clinician characteristic associated with attitudes on end-of-life care dissimilar to the consensus positions reached by national medical and nursing organizations on these issues. There was no association between clinician characteristics such as their political or religious affiliation, practice-related variables such as the size of their intensive care unit or the presence of residents and fellows, and particular attitudes about end-of-life care. CONCLUSIONS: Nearly two-thirds of pediatric critical care physicians and nurses express views on end-of-life care in strong agreement with consensus positions on these issues adopted by national professional organizations. Clinicians with fewer years of pediatric critical care practice are less likely to agree with this consensus. Compared with physicians, nurses are significantly less likely to agree that families are well informed and ethical issues are well discussed when assessing actual practice in their intensive care unit. More collaborative education and regular case review on bioethical issues are needed as part of standard practice in the intensive care unit.
2001
Burns JP; Mitchell C; Griffith JL; Truog RD
Critical Care Medicine
2001
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/10.1097/00003246-200103000-00036" target="_blank" rel="noreferrer">10.1097/00003246-200103000-00036</a>
End-of-Life Healthcare Service Needs Among Children With Neurological Conditions: A Latent Class Analysis
concurrent hospice care; healthcare services; infants; latent class analysis; neurological conditions; nursing; pediatric hospice care; pediatrics
BACKGROUND: At the end of life, children with neurological conditions have complex healthcare needs that can be met by providing care of their life-limiting conditions concurrently with hospice care (ie, concurrent care). Given the limited literature on concurrent care for children with neurologic conditions, this investigation aimed to identify patterns of nonhospice, healthcare service needs and to assess characteristics of children within each group. METHODS: A nationally representative sample children with neurological conditions enrolled in concurrent hospice care was used. Latent class analysis and descriptive statistics were calculated to identify patterns of healthcare needs and characteristics of children within the groups. A subgroup analysis of infants was conducted. RESULTS: Among the 1601 children, the most common types of services were inpatient hospitals, durable medical equipment, and home health. Two classes of service needs were identified: moderate intensity (58%) and high intensity (42%). Children in the moderate-intensity group were predominantly between 1 and 5 years old, male, White, and non-Hispanic. The most common neurological condition was central nervous system degeneration. They also had significant comorbidities, mental/behavioral health conditions, and technology dependence. They commonly resided in urban areas in the South. Children in the high-intensity group had a wide range of neurological conditions and high acuity. The subgroup analysis of infants indicated a different neurological profile. CONCLUSIONS: Two distinct classes of nonhospice, healthcare service needs emerged among children with neurological conditions at the end of life. The groups had unique demographic profiles.
Lindley LC; Svynarenko R; Mooney-Doyle K; Mendola A; Naumann WC; Fortney CA
Journal of Neuroscience Nursing
2021
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/10.1097/jnn.0000000000000615" target="_blank" rel="noreferrer noopener">10.1097/jnn.0000000000000615</a>
Evaluation of an Electronic Medical Record Module for Nursing Documentation in Paediatric Palliative Care: Involvement of Nurses with a Think-Aloud Approach
Documentation; Electronic medical record; Nurses; Nursing; Palliative care; Pediatrics; Think-aloud
Background: Paediatric palliative care (PPC) is a noncurative approach to the care of children and adolescents with life-limiting and life-threatening illnesses. Electronic medical records (EMRs) play an important role in documenting such complex processes. Despite their benefits, they can introduce unintended consequences if future users are not involved in their development. Aim(s): The aim of this study was to evaluate the acceptance of a novel module for nursing documentation by nurses working in the context of PPC. Method(s): An observational study employing concurrent think-aloud and semi-structured qualitative interviews were conducted with 11 nurses working in PPC. Based on the main determinants of the unified theory of acceptance and use of technology (UTAUT), data were analysed using qualitative content analysis. Result(s): The main determinants of UTAUT were found to potentially influence acceptance of the novel module. Participants perceived the module to be self-explanatory and intuitive. Some adaptations, such as the reduction of fragmentation in the display, the optimization of confusing mouseover fields, and the use of familiar nursing terminology, are reasonable ways of increasing software adoption. Conclusion(s): After adaptation of the modules based on the results, further evaluation with the participation of future users is required. Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
Kernebeck S; Busse TS; Jux C; Dreier LA; Meyer D; Zenz D; Zernikow B; Ehlers JP
International Journal of Environmental Research and Public Health
2022
<a href="http://doi.org/10.3390/ijerph19063637" target="_blank" rel="noreferrer noopener">10.3390/ijerph19063637</a>
Exploring the benefits of a subjective approach in qualitative nursing research
Research; Nursing
1994
Schutz S
Journal Of Advanced Nursing
1994
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/10.1111/j.1365-2648.1994.tb02374.x" target="_blank" rel="noreferrer">10.1111/j.1365-2648.1994.tb02374.x</a>
Exploring The Spiritual Needs Of Families With Seriously Ill Children
Adolescent; Child; Cultural Characteristics; Family/psychology; Female; Humans; Male; Needs Assessment; Nursing Assessment; Palliative Care; Professional-family Relations; Qualitative Research; Spirituality
Nursing; Spirituality; Pediatrics; Palliative Care; Qualitative
Although we know that families of seriously ill children experience spiritual distress, especially at the end of the child's life, there is little information on the specific spiritual needs of families. In order to develop further training for nurses in paediatrics and help nurses develop skills for communicating about spirituality, this research examined the spiritual needs of families based on nurses' experiences with families of seriously ill children. Nurses' experiences revealed that families' anger with God, blame/regret, forgiveness, and ritual and cultural traditions are salient spiritual needs requiring effective nurse communication skills to support families of ill children.
Ferrell B
International Journal Of Palliative 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).
http://dx.doi.org/10.12968/ijpn.2016.22.8.388
Extending palliative care into pregnancy and the immediate newborn period: state of the practice of perinatal palliative care
Nursing; Adaptation; PedPal Lit; organization & administration; organization & administration; organization & administration Postnatal Care; Newborn Medical Futility Neonatal Nursing; organization & administration Nurse's Role Organizational Objectives Palliative Care; organization & administration Patient Care Team; organization & administration Perinatal Care; organization & administration Prenatal Diagnosis; Psychological Continuity of Patient Care/organization & administration Counseling/organization & administration Family/psychology Grief Health Services Needs and Demand Humans Infant; psychology Patient Care Planning; psychology Prenatal Care; psychology Social Support Withholding Treatment
Many infants die immediately prior to birth or in the neonatal period; thus, it is imperative that we begin to recognize the importance of integrating palliative care into pregnancy and the immediate newborn period. While advances in perinatal care have changed the decisions parents face when they receive a diagnosis of a life-limiting or life-threatening condition, the importance of perinatal palliative care has only recently been recognized as a viable option for care. Perinatal palliative care emphasizes the importance of planning for the limited amount of time families may have with their baby. This article provides a brief overview of perinatal palliative care, with a focus on who may benefit, the goals of care, and what services are provided. There is also a review of current palliative care programs and a discussion of how nurses can become more involved in this much-needed area of infant care.
2006
Sumner L; Kavanaugh K; Moro T
Journal of Perinatal & Neonatal Nursing
2006
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/10.1097/00005237-200601000-00032" target="_blank" rel="noreferrer">10.1097/00005237-200601000-00032</a>
Facilitating transitions: redefinition of the nursing mission
Organizational Objectives; Philosophy; Organizational Innovation; Models; Nursing; Nursing/organization & administration
1994
Meleis AI; Trangenstein PA
Nursing Outlook
1994
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/10.1016/0029-6554(94)90045-0" target="_blank" rel="noreferrer">10.1016/0029-6554(94)90045-0</a>
Factors influencing nurse retention within children's palliative care
Children; nursing; education; nurse’s role; palliative care nursing
Retention of staff presents major challenges within children's palliative care; this has substantial implications for children, families and the nursing workforce. To address this, a programme was undertaken that provided pathways of professional development for senior nurses working in this field. This study reports the views of nurses completing this programme, the overall project manager (PM) and the day-to-day programme lead (PL) as well as factors that influence nurse retention within children's palliative care nursing. The study drew on an Appreciative Inquiry approach that comprised of interviews with the PM and PL as well as focus groups and questionnaires with senior nurses from the children's palliative care sector, who participated in the training programme. Thematic analysis of data from interviews and focus groups revealed factors influencing nurse retention: speciality, positivity and making a difference, support, provision of adequate resources, tailored education/professional development and resilience. These themes were supported by the questionnaire findings. The programme was perceived as having a positive influence on nurse retention within the children's palliative care workforce. In addition, it was felt to be very beneficial in terms of shared learning and development. Participants highlighted the need for similar opportunities in the future.
Whiting L; O'Grady M; Whiting M; Petty J
Journal of Child Health Care
2020
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<a href="http://doi.org/10.1177/1367493520971426" target="_blank" rel="noreferrer noopener">10.1177/1367493520971426</a>
Family-centered care and pediatric death in the emergency department: A qualitative study using framework analysis
Family-centered care; Emergency department; Nursing; Qualitative; Pediatric death
Background Family-centered care is an important concept underpinning care of children. Although much researched in some settings, little research has explored specialist settings, or areas where both children and adults are cared for, such as the emergency department. Methods This study sought to explore how nurses employ family-centered care in delivering care to children and families when a child dies in the emergency department. Using a descriptive, qualitative approach, semi-structured interviews were conducted with 24 emergency nurses from six Australian states. Interviews were audio-recorded and transcribed verbatim. Framework analysis was applied to examine alignment with family-centered care principles. Findings Nurses described providing support and education, and encouraged families to engage in care decisions, including about ceasing resuscitation efforts. Commonly, senior staff members were allocated during emergencies to support parents. Discussion Emergency nurses should be offered education on family-centered care, and research undertaken to explore families' experiences of their child dying in the emergency department. Practice Implication Family-centered care should be a focus for the care of children and their families in the emergency department, regardless of the pressure from rapidly occurring events.
McKenna L; Shimoinaba K; Copnell B
Journal of Pediatric Nursing
2022
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<a href="http://doi.org/10.1016/j.pedn.2022.01.013" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.01.013</a>
Good death term in the aspect of paediatric palliative care nursing
good death; nursing; pediatric palliative care
Introduction: When faced with serious illness and the possibility of a child's death, a family experiences many uncertainties and traumatic experiences. The expected normal order of life is significantly disrupted, and a diagnosis of a life-threatening or life-limiting illness can greatly alter family functioning and overall well-being. The importance of addressing a child and their family members' physical, emotional, cultural, spiritual, and psychosocial needs has been well documented in pediatric palliative care. Discussion(s): Death is one of the main threats for a human being. It is usually seen as an adult or geriatric populations' problem, so the idea of "children and babies may die, too" is mostly avoided or prohibited from talking by societies, families, health-care professionals, etc. And all of these children and families suffer from during end of life or/and bereavement process. To stop these nurses and other health-care professionals are important to deliver care in the aspect of good death. Good death or die with dignity for child and their families contain 'free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients' and families' wishes; and reasonably consistent with clinical, cultural and ethical standards in terminal illnesses'. In other words, freedom from distressing symptoms, dying in a favorite place, good relationships with family members and medical staff, a feeling that the dying person's life is complete, maintained dignity, preparation for death were also other parts of a good death. To ensure good end for pediatric palliative care, nurses should take advanced nursing practices and responsibilities, but this is not simple because this aspect of nursing is not given by education, neither undergraduate nor post-graduate education. Nursing education at the undergraduate level is mainly based on the medical model. Therefore, while students are receiving detailed information about the protection, prevention, treatment, and rehabilitation of diseases, and they have a limited education on the end of life. As a result, the student nurses and nurses do not want to care for the individual who has a terminal illness, do not feel ready for them, feel a sense of inadequacy, and the care of the patient and his/her family is negatively affected. So education should be planned end of life care, a good death, and palliative care to stop possible negative effects.
Ozkan S; Tas Arslan F
Cogent Medicine. Conference: 11th Annual Excellence in Pediatrics Conference. Denmark.
2019
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<a href="http://doi.org/10.1080/2331205X.2019.1694205" target="_blank" rel="noreferrer noopener">10.1080/2331205X.2019.1694205</a>
Growing a professional network to over 3000 members in less than 4 years: evaluation of InspireNet, British Columbia's virtual nursing health services research network
Humans; Education; Communication; Nurses; Health Services Research; British Columbia; Focus Groups; Computer Communication Networks; Nursing Research; Health Services; Research; Internet; Nursing; Blogging; social media; social networking; User-Computer Interface
BACKGROUND: Use of Web 2.0 and social media technologies has become a new area of research among health professionals. Much of this work has focused on the use of technologies for health self-management and the ways technologies support communication between care providers and consumers. This paper addresses a new use of technology in providing a platform for health professionals to support professional development, increase knowledge utilization, and promote formal/informal professional communication. Specifically, we report on factors necessary to attract and sustain health professionals' use of a network designed to increase nurses' interest in and use of health services research and to support knowledge utilization activities in British Columbia, Canada. OBJECTIVE: "InspireNet", a virtual professional network for health professionals, is a living laboratory permitting documentation of when and how professionals take up Web 2.0 and social media. Ongoing evaluation documents our experiences in establishing, operating, and evaluating this network. METHODS: Overall evaluation methods included (1) tracking website use, (2) conducting two member surveys, and (3) soliciting member feedback through focus groups and interviews with those who participated in electronic communities of practice (eCoPs) and other stakeholders. These data have been used to learn about the types of support that seem relevant to network growth. RESULTS: Network growth exceeded all expectations. Members engaged with varying aspects of the network's virtual technologies, such as teams of professionals sharing a common interest, research teams conducting their work, and instructional webinars open to network members. Members used wikis, blogs, and discussion groups to support professional work, as well as a members' database with contact information and areas of interest. The database is accessed approximately 10 times per day. InspireNet public blog posts are accessed roughly 500 times each. At the time of writing, 21 research teams conduct their work virtually using the InspireNet platform; 10 topic-based Action Teams meet to address issues of mutual concern. Nursing and other health professionals, even those who rated themselves as computer literate, required significant mentoring and support in their efforts to adopt their practice to a virtual environment. There was a steep learning curve for professionals to learn to work in a virtual environment and to benefit from the available technologies. CONCLUSIONS: Virtual professional networks can be positioned to make a significant contribution to ongoing professional practice and to creating environments supportive of information sharing, mentoring, and learning across geographical boundaries. Nonetheless, creation of a Web 2.0 and social media platform is not sufficient, in and of itself, to attract or sustain a vibrant community of professionals interested in improving their practice. Essential support includes instruction in the use of Web-based activities and time management, a biweekly e-Newsletter, regular communication from leaders, and an annual face-to-face conference.
2014
Frisch N; Atherton P; Borycki E; Mickelson G; Cordeiro J; Novak LH; Black A
Journal Of Medical Internet Research
2014
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Journal Article
<a href="http://doi.org/10.2196/jmir.3018" target="_blank" rel="noreferrer">10.2196/jmir.3018</a>
Hospice nurses request paediatric-specific educational resources and training programs to improve care for children and families in the community: Qualitative data analysis from a population-level survey
qualitative research; Paediatrics; palliative care; education; hospice and palliative care nursing; health care surveys; hospice care; nursing
BACKGROUND: Children with serious illness who receive hospice care often interface with nurses who lack training, experience and comfort in the provision of paediatric palliative and hospice care. Hospice nurse preferences for paediatric-specific training are not well known. AIM: To describe the types of paediatric-specific training received and educational content preferred by hospice nurses. DESIGN: Population-level dissemination of a cross-sectional survey with qualitative analysis of open-ended survey items. SETTING/PARTICIPANTS: Nurses from 71 community-based hospice organizations across 3 states completed the survey. RESULTS: An open-ended response was provided by 278/551 (50.5%) survey respondents. A total of 55 respondents provided 58 descriptions of prior paediatric-specific training, including a formal 2-day course (n = 36; 65.5%), on-the-job education (n = 13, 23.6%), online training (n = 5, 9.1%), nursing school (n = 2, 3.6%) and paediatric advanced life support courses (n = 2, 3.6%). A total of 67 respondents described 74 hospice-led educational efforts, largely comprised of a 2-day course (n = 39; 54.2%) or provision of written materials (n = 11; 15.3%). A total of 189 respondents described 258 preferences for paediatric-specific training, with nearly half (n = 93; 49.2%) requesting 'any' or 'all' types of education and the remainder requesting education around medication use (n = 48; 25.4%), symptom assessment/management (n = 32; 16.9%), pain assessment/management (n = 28; 14.8), communication (n = 29; 15.3%) and psychosocial assessment/management (n = 28; 14.8). CONCLUSIONS: Hospice nurses self-report inadequate exposure to educational resources and programs, in conjunction with a strong desire for increased paediatric-specific training. Identification of targetable gaps should inform the development of educational resources, policies and other supportive interventions to improve delivery of care to children and families in the community.
Kaye EC; Applegarth J; Gattas M; Kiefer A; Reynolds J; Zalud K; Baker JN
Palliative Medicine
2019
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<a href="http://doi.org/10.1177/0269216319866576" target="_blank" rel="noreferrer noopener">10.1177/0269216319866576</a>
Human research ethics committees: issues in palliative care research
Humans; Attitude to Health; Attitude of Health Personnel; Nurse's Role; Research Design; Patient Advocacy; Ethics; Terminally Ill/psychology; Ethics Committees; Multi-site Ethics; Nursing; Research/organization & administration; Research Personnel/psychology; Human Experimentation; Nursing Research/ethics; Palliative Care/ethics/psychology
Palliative care research is fraught with many difficulties. There are challenges associated with conducting research with vulnerable patients and families, difficulties with obtaining informed consent, and methodological complexities. Thoughtful construction of research protocols may overcome many of these problems. However, researchers may be powerless to overcome the discomfort of members of human research ethics committees (HRECs) who disallow access to palliative care patients and families. The notion of conducting research with this group is often perceived as abhorrent by those who do not practise in palliative care. This is because of a persistent idea that dying people and their families are so burdened by the dying process and so vulnerable to exploitation that they should not be approached to be involved in research. This over-protectiveness regarding palliative care research often distorts the proper gate-keeping role of HRECs and health-care professionals. This article draws on the authors' experiences of presenting applications to HRECs over the last 20 years. It explores the responsibilities of HRECs, the responsibilities of palliative care researchers and the rights of patients and families. HRECs and health professionals who endeavour to undertake palliative care research are encouraged to reflect and re-examine the role of ethics committees.
2003
Lee S; Kristjanson LJ
International Journal Of Palliative Nursing
2003
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.2003.9.1.11040" target="_blank" rel="noreferrer">10.12968/ijpn.2003.9.1.11040</a>
Independent non-medical prescribing in children's hospices in the UK: a practice snapshot
Children; Hospice; Independent Prescribing; Non-medical; Nursing
Background: Non-medical prescribing is well established within the British health service, with increasing numbers of nurses practicing within children's hospices. Aim: To identify the context of non-medical prescribing in children's hospices in the UK, focusing on the perceived benefits and challenges. Method: Internet-based questionnaires were sent to 55 UK children's hospices, exploring the practice and context of prescribing. Results: Of the 55 invited, 20 children's hospices responded to the questionnaire, 14 of which employed a total of 39 non-medical prescribers (NMPs). Sixteen individual NMPs responded, of which half (50%) prescribed to enable the continuation of existing medicines, 37.5% prescribed independently surrounding symptom management and control and 31.3% in end-of-life care. Perceived benefits of prescribing included timely access to medicines, increased efficiency and accuracy in the admissions process and medicine reconciliation and the increased ability to offer choice in the place of palliative and hospice care. Perceived barriers to prescribing surrounded opportunities to develop confidence, defining the scope of practice and the time required to assess, diagnose and treat. Conclusion: NMPs are making a significant contribution to the prescribing workforce within hospices; however, a number of challenges need to be addressed to enable hospices to realise the benefits.
Tatterton MJ
International Journal Of Palliative 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/10.12968/ijpn.2017.23.8.386" target="_blank" rel="noreferrer">10.12968/ijpn.2017.23.8.386</a>
Knowledge translation in everyday nursing: From evidence-based to inquiry-based practice
Nursing; knowledge; Best Practices (Davies)
2008
Doane GH; Varcoe C
Advances In Nursing Science
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/10.1097/01.ans.0000341409.17424.7f" target="_blank" rel="noreferrer">10.1097/01.ans.0000341409.17424.7f</a>
Living With Dying In The Pediatric Intensive Care Unit: A Nursing Perspective
Child; Nurses; Nursing; Death; Compassion Fatigue; Grief; Professionals; Critical Care Medicine; Experiences; Pediatric Intensive-care; Beliefs; Opinions And Attitudes; Management; Critically Ill Children; Health Aspects; Analysis; Nurses; Intensive Care Units Pediatric; Pediatric Nursing; Family; Practice
BACKGROUND:
Despite reported challenges encountered by nurses who provide palliative care to children, few researchers have examined this phenomenon from the perspective of nurses who care for children with life-threatening illnesses in pediatric intensive care units.
OBJECTIVES:
To describe and interpret the essence of the experiences of nurses in pediatric intensive care units who provide palliative care to children with life-threatening illnesses and the children's families.
METHODS:
A hermeneutic phenomenological study was conducted with 12 pediatric intensive care unit nurses in the northeastern United States. Face-to-face interviews and field notes were used to illuminate the experiences.
RESULTS:
Five major themes were detected: journey to death; a lifelong burden; and challenges delivering care, maintaining self, and crossing boundaries. These themes were illuminated by 12 subthemes: the emotional impact of the dying child, the emotional impact of the child's death, concurrent grieving, creating a peaceful ending, parental burden of care, maintaining hope for the family, pain, unclear communication by physicians, need to hear the voice of the child, remaining respectful of parental wishes, collegial camaraderie and support, and personal support.
CONCLUSION:
Providing palliative care to children with life-threatening illnesses was complex for the nurses. Findings revealed sometimes challenging intricacies involved in caring for dying children and the children's families. However, the nurses voiced professional satisfaction in providing palliative care and in support from colleagues. Although the nurses reported collegial camaraderie, future research is needed to identify additional supportive resources that may help staff process and cope with death and dying.
Stayer; Lockhart; J S
American Journal Of Critical Care
2016
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DOI: 10.4037/ajcc2016251
Locating a geography of nursing: space, place and the progress of geographical thought
Humans; Nursing Research; Philosophy; Demography; Nursing
Although traditionally, nursing research has paid little attention to geographical approaches, recent years have witnessed some initial research interest in the dynamic between nursing, space and place. Such research potentially represents the foundations of what may be termed a 'geography of nursing'. Although, to date, some novel and valuable perspectives have been gained into the spatial features of nursing, no consideration has been given to the theoretical development of, and basis for, a geography of nursing. Furthermore, no consideration has been given to philosophical heritage; the treatment of space and place in human geography and the insights that this may provide for the new field of research. In this context, this paper provides an historical review of geographical research and traces the evolution of how space and place have been conceptualized and operationalized by it. The paper outlines the emergence of a health geography subdiscipline and its own changing and diverse perspectives. In the final section, the central themes of the current geography of nursing are considered and, reflecting back on the theoretical concerns of contemporary human geography, the paper outlines some philosophies and theories on which future geography of nursing could be based. From a disciplinary perspective, one potential role of the geography of nursing is argued to be the maintenance of the relationship between health geography and mainstream health service and medical concerns, but in a place-sensitive, patient-sensitive and qualitative form.
2003
Andrews GJ
Nursing Philosophy
2003
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Journal Article
<a href="http://doi.org/10.1046/j.1466-769x.2003.00140.x" target="_blank" rel="noreferrer">10.1046/j.1466-769x.2003.00140.x</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>
Mapping the journey of cancer patients through health care system. Part 1: developing the research question
Humans; Attitude to Health; Data Collection; Research Design; Longitudinal Studies; Motivation; Philosophy; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Nursing; Delivery of Health Care/standards; Manitoba; Neoplasms/diagnosis/psychology/therapy; Nursing Methodology Research/methods
This is the first in a series of articles relating results from research which constructed a complete history of interactions with the health care system from available data sources for all patients diagnosed in 1990 with primary breast, colorectal, or lung tumours in Manitoba from one year prior to diagnosis through to two years post-diagnosis. This article presents the motivation and genesis for this line of research. The study evolved from the question of "What happens to a person who is diagnosed with cancer?" into a major research endeavour encompassing a broad spectrum of philosophic and clinical research questions. A large interdisciplinary team collaborated on developing operational methods to combine existing data sources into unified cancer patient histories.
2004
Sloan JA; Scott-Findlay S; Nemecek A; Blood P; Trylinski C; Whittaker H; El Sayed S; Clinch J; Khoo K
Canadian Oncology Nursing Journal
2004
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/10.5737/1181912x143183186" target="_blank" rel="noreferrer">10.5737/1181912x143183186</a>
Maternal mourning: pain and coping with the loss of a baby
Grief; Infant Mortality; Mother-child Relations; Nursing
Objective: to understand how mothers experienced the experience of their babies' mourning. Methods: this is a qualitative study, conducted with nine mothers who experienced the loss of a child under one year. Semi-structured interviews were conducted, and the reports were organized using the Collective Subject Discourse. Results: the participants indicated the complexity and difficulties of the mourning process, implying a grief that lasted but could be overcome through spirituality and family support. They also showed the lack of support from the health services. Conclusion: although mourning is a complex and peculiar process, the mothers pointed out the importance of the spirituality and support of their relatives, but highlighted the lack of support from the health services.
Lopes BG; Borges PKD; Grden CRB; Coradassi CE; Sales CD; Damasceno NFP
Revista Da Rede De Enfermagem Do Nordeste
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/10.15253/2175-6783.2017000300004" target="_blank" rel="noreferrer">10.15253/2175-6783.2017000300004</a>