Exploring the Palliative Care Needs of Children in Refugee Settlements in Uganda
Child; child; Palliative Care; adult; human; chronic disease; palliative therapy; needs assessment; data analysis; Only Child; distress syndrome; conference abstract; refugee; Uganda; Uganda; thermometer; mentor; refugee camp
Background/aims: Palliative care for children should be provided wherever the child is who needs care, whether that be at home, at school, in a clinic, in a hospital, in a hospice, as well as including in humanitarian settings. It should be provided by all health providers and not just by palliative care specialists. Since 2016 the importance of palliative care within humanitarian crises settings has been recognised, with palliative care being included in the SPHERE handbook in 2018 and the ongoing development of guidelines for paediatric palliative care in organisations such as Medicines San Frontieres (MSF) and the publication of a handbook by the World Health Organization. However, there has been minimal data with regards to the need for palliative care provision in humanitarian settings. Work in several countries is ongoing to understand the needs of people - both adults and children, living with chronic diseases amongst refugee communities. In Uganda there are approximately 1.45 million refugees, 59% of whom are children. This paper will report on some of the work being undertaken in Uganda to explore the palliative care needs of children in refugee settlements. <br/>Method(s): Mixed methods study in refugee populations including rapid participatory appraisal, training and mentorship and needs assessment undertaken between 2018 and 2022, in host and refugee populations in Obongi and Adjumani Districts, Northern Uganda. Tools used include the children's palliative outcome scale, the distress thermometer and ECOG. Ethical approval was gained from UNCST and children with unmet clinical needs were signposted for support. <br/>Result(s): The results of several studies undertaken in Northern Uganda will be reported on. Initial data suggests high levels of need for children's palliative care, with significant unmet PC need and high levels of distress amongst children and their families. Data analysis is ongoing and initial results will be shared in this presentation. <br/>Conclusion(s): It is essential that we address the palliative care needs of children living in humanitarian settings. Yet little is known of the magnitude of the need for children's palliative care in such settings, nor the burden of unmet need. Studies such as this one will contribute to the evidence base for providing palliative care for children in humanitarian settings beyond that of anecdotal accounts and contribute towards recommendations for the provision of children's palliative care in humanitarian settings.
Downing J; Santiago T; Opia V; Oziti G; Namukwaya E; Nabirye L; Maku S; Nalutaaya F; Bagasha P; Smith C; Ikong H; Venkatesh C; Howarth K; McGeough K; Grant L; Leng M
Palliative Medicine
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/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</a>
Factors associated with mental health service use among families bereaved by pediatric cancer
child; Bereavement; article; controlled study; female; human; major clinical study; male; palliative therapy; education; sibling; Mental Health Services; bereavement; cooperation; distress syndrome; randomized controlled trial; health care personnel; self report; multicenter study; race; mother; home visit; malignant neoplasm; demography; father; support group; self help; educational status; mental health service; Child Behavior Checklist
OBJECTIVES: We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families. METHOD(S): Bereaved families (n = 85) were recruited from three children's hospitals 3-12 months after their child died of cancer. One eligible sibling (ages 8-17) per family was randomly selected for participation. During home visits 1-year post-death, parents reported on their own and the sibling's intervention use, helpfulness, and dose (self-help books, support groups, therapy, medication), and distress, defined as internalizing, externalizing, and total problems (Adult Self Report, Child Behavior Checklist). RESULT(S): Fifty percent of mothers used medications (n = 43); utilization was low among fathers (17%, n = 9) and siblings (5%, n = 4). Individuals with more total problems were more likely to use medications (mothers: rpb = 0.27; p = 0.02; fathers: rpb = 0.32; p = 0.02; siblings: rpb = 0.26; p = 0.02). Mothers and siblings with more total problems used more services (r = 0.24; p = 0.03 and r = 0.29; p = 0.01, respectively). Among mothers, the overall regression was significant, R2 = 0.11, F(2, 80) = 4.954, p = 0.01; the deceased child's age at death was significantly associated with total services used (b = 0.052, p = 0.022). Among fathers, the overall regression was significant, R2 = 0.216, F(3, 49) = 4.492, p = 0.007; race and years of education were significantly associated with total services used (b = 0.750, p = 0.030 and b = 0.154, p = 0.010). Among siblings, the overall regression was significant R2 = 0.088, F(2, 80) = 3.867, p = 0.025; greater total problems were significantly associated with total services used (b = 0.012, p = 0.007). SIGNIFICANCE OF RESULTS: Although few background factors were related to intervention use, bereaved mothers and siblings may seek services if they have more distress. Healthcare providers should be aware of the types of services that are most often utilized and helpful to bereaved families to connect them with appropriate resources. Future research should investigate other predictors of intervention use and outcomes after the death of a child.
Hill KN; Olsavsky A; Barrera M; Gilmer MJ; Fairclough DL; Akard TF; Compas BE; Vannatta K; Gerhardt CA
Palliative and Supportive Care
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/10.1017/S1478951522001018" target="_blank" rel="noreferrer noopener">10.1017/S1478951522001018</a>
Redirecting Care: Compassionate Management of the Sick or Preterm Neonate at the End of Life
Infant, Newborn; terminal care; human; palliative therapy; patient care; newborn care; newborn death; pain; philosophy; review; personal experience; distress syndrome; emotionality; parental behavior; health care personnel; family relation; family support; doctor patient relationship; compassionate care; intersectoral collaboration; parent counseling; psychological care
The primary moral commitment of medical care has traditionally been based on a belief in the intrinsic value and significance of human life and a desire to protect the most vulnerable from harm. In this respect, the care of newborn infants who are at the border of viability is no different. Despite the intrinsic value of the life of every newborn, all agree that there is no moral duty of doctors to provide every possible treatment where the prognosis is hopeless. Instead, every action and treatment should be orientated towards the best interests of the individual child and towards the minimisation of serious harm. Decisions about the withholding or withdrawal of life-supportive treatment should be made collaboratively between professionals and parents, with discussion starting prior to delivery wherever possible. The goals of neonatal palliative care are to prevent or minimise pain and distressing symptoms and to maximise the opportunity for private, loving interaction between the dying baby and his or her parents and the wider family. Physical contact, gentle stroking, cuddles and tender loving care are of central importance for the dying baby. At the same time, we must provide psychological support for parents and family as they go through the profound and painful life experience of accompanying their baby to death. To enable a baby to die well, pain-free and in the arms of loving parents and carers is not a failure but a triumph of neonatal care.
Wyatt J; Hain R
Children
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/10.3390/children9030344" target="_blank" rel="noreferrer noopener">10.3390/children9030344</a>
Psychological distress and social support among community paediatric palliative care programme caregivers: longitudinal analysis
Palliative Care; child; human; palliative therapy; pediatrics; home care; Social Support; social support; caregiver; distress syndrome; mental stress; letter
Wong ECY; Au-Doung PLW; Chu YYL; Wong SSY; Li CK; Cheung YT
BMJ Supportive and Palliative Care
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="https://spcare.bmj.com/content/early/2023/04/03/spcare-2023-004301">10.1136/spcare-2023-004301</a>
Impact of Palliative Care Integration on End-of-Life Outcomes in Pediatric Hematopoietic Cell Transplant
hematopoietic cell; palliative therapy; transplantation; anxiety; appetite; bleeding; bodily secretions; child; conference abstract; controlled study; coughing; data analysis; demographics; diarrhea; distress syndrome; do not resuscitate order; documentation; dyspnea; edema; fatigue; female; fever; hospice; human; human cell; intubation; irritability; lifespan; major clinical study; male; medical record review; nausea and vomiting; pain; Palliative Care; quality of life; retrospective study; surgery; survival; terminal care
Introduction: Pediatric hematopoietic cell transplant (HCT) confers a high risk of morbidity and mortality and palliative care (PC) integration in HCT may improve outcomes. PC services can aid in advanced care planning, symptom management, and wholistic support for patients and their families, especially at end-of-life, yet little empiric data exists regarding the impact of PC involvement in pediatric HCT. Objective(s): Compare deceased pediatric HCT patients with and without PC involvement to identify differences in end-of-life characteristics. Method(s): Retrospective medical record review was performed for all HCT patients at St. Jude Children's Research Hospital who died between March 2008 and October 2017 (N=160). Variables collected included: demographics, PC involvement, symptom and end-of-life characteristics. Data analysis included descriptive statistics and tests of significance. Result(s): Of 160 deceased HCT patients PC involvement was present in 115 (71.9%) compared to 45 (28.1%) with no PC. No significant differences in demographic characteristics were noted between the 2 groups. Longer survival duration from HCT to death was noted in patients who received PC whose mean death was 305.5 days after HCT (median 189, range 10-2,834) as compared to a mean of 228.8 days between HCT and death in the no PC group (median 129, range 13-1,444) (p=0.047). Significant differenced were noted in which patients with PC involvement were more likely to have a DNR order (PC n=76 74.5%, NPC n=16 48.5% p=.005), less likely to be intubated in the last 24 hours of life (PC n=36 34%, NPC n=21 60% p=.006), and more likely to have been enrolled in hospice (PC n=38 33%, NPC n=4 8.9% p=.002). Documentation of distressing symptoms in the last month of life was higher in the PC group with notable symptom burden in both groups. Most frequently documented symptoms overall were pain (95.3%), fatigue (83.2%), fever (80.0%), edema (78.0%), bleeding (66.9%), diarrhea (65.6%), poor appetite (65.3%), anxiety (63.4%), nausea/ vomiting (58.9%), dyspnea (58.5%), secretions (57.4%), irritability (48.0%), and cough (47.5%). Conclusion(s): PC integration in pediatric HCT likely results in improved end-of-life care by way of enhanced advanced care planning, decreased intubation and resuscitative events, and increased hospice enrollment. PC integration in HCT does not lead to shorter life spans and may improve quality of life via enhanced symptom recognition and management.Copyright © 2023 American Society for Transplantation and Cellular Therapy
Levine DR; Cuviello A; Baker JN
Transplantation and Cellular Therapy
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/10.1016/S2666-6367%2823%2900237-3" target="_blank" rel="noreferrer noopener">10.1016/S2666-6367%2823%2900237-3</a>
Early Integration of Pediatric Palliative Care in Pediatric Hematopoietic Stem Cell Transplant Patients
distress syndrome; hematopoietic stem cell; palliative therapy; transplantation; child; conference abstract; consultation; controlled study; evidence based practice center; female; Hematopoietic Stem Cells; human; human cell; learning; major clinical study; male; medical record review; morbidity; mortality; Palliative Care; retrospective study; risk assessment; satisfaction; staff training; Stem Cell Transplantation
Topic significance and study purpose/background/rationale: Patients undergoing hematopoietic stem cell transplant (HSCT) are at risk for significant morbidity and mortality and experience distressing psychological and physical symptoms. Access to palliative care services early in the treatment course can mitigate psychological suffering, address physical symptoms, and establish rapport with the palliative care team. There is no standardized practice for palliative care consultations for these patients. The aim of this evidence-based practice project was to determine if the early implementation of a palliative care trigger tool increases the number of palliative care consults in this population. Methods, intervention, and analysis: A pre-intervention survey was administered to assess staff understanding and satisfaction with palliative care services. A retrospective chart review was conducted to determine patients at highest risk for morbidity and mortality from HSCT. A paper trigger tool was developed to identify patients considered highest risk in order to place a palliative care consultation prior to or on admission for HSCT. Implementation included staff education via various medias. The trigger tool was implemented over a 6-month period on a 24 bed HSCT Unit. Findings and interpretation: The staff pre-survey demonstrated support for the project with 79% being very or extremely interested in learning more about palliative care. Additionally, 60% disagreed or strongly disagreed that palliative care services were introduced early enough. Based on a two and a half year retrospective chart review, 51 patients met criteria for early integration of palliative care services and 15 received consultations. To date, the trigger tool has been used on 14 patients and has resulted in early consultation in 11 patients. Discussion and implications: Based on the trigger tool, most patients admitted for HSCT qualify for early integration of palliative care services. The tool effectively identified patients for early integration of palliative care services. Providing early palliative care is an important priority of care for patients undergoing HSCT.Copyright © 2023 American Society for Transplantation and Cellular Therapy
Kent L; Williams M; Pinner LA; Callard E; Fisher J; Pyke-Grimm K
Transplantation and Cellular Therapy
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/10.1016/S2666-6367%2823%2900179-3" target="_blank" rel="noreferrer noopener">10.1016/S2666-6367%2823%2900179-3</a>
Learning Disability Nurses in Palliative Care - A Narrative on Diversifying the Workforce and the Caseload
learning disorder; narrative; nurse; Palliative Therapy; workforce; Adult; Adulthood; Attention; Autism; Child; cognitive defect; cohort analysis; conference abstract; distress syndrome; employment; epilepsy; Female; geriatric disorder; Hospice; Human; learning; Learning Disorders; malignant cardiac tumor; neurodisability; Palliative Care; skill; Terminal Care; treatment failure
There have been multiple recent reports regarding the inequalities in palliative and end of life care for people with learning disabilities; but little if any attention paid to the role of learning disability nurses working in palliative care. Children's hospices often have a well-established cohort of learning disability nurses in their employment. This has not currently translated into adult palliative care; increasingly though, children with complex neuro-disabilities and life-limiting conditions are living into adulthood with good care, and need specialist symptom management and end of life care through transition into adult services. Adults with learning disabilities and other complex health conditions are also now living into later life and are more likely to develop age related illnesses such as cancers, heart failure etc., rather than dying from an acute episode related to epilepsy, for example. Learning disability nurses bring a specialist skill set in supporting people with a known LD diagnosis, but also those with acquired cognitive impairment, those in mental distress, people with communication difficulties and autistic people. A Learning Disability Nurse may recognise undiagnosed learning or support needs in patients, and be able to provide strategies to ameliorate those needs. The author would like to present a narrative on her experiences of moving into palliative care and how Learning Disability Nurses can provide a new perspective and skill set within the specialist palliative care team.
Marsden S
BMJ Supportive and Palliative Care
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/10.1136/spcare-2022-HUNC.102" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.102</a>
"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>
Advances in pediatric psychooncology
child; human; palliative therapy; adult; childhood cancer; review; young adult; sibling; attention; distress syndrome; outcome assessment; cancer patient; infant; psychosocial care; bereavement; cancer center; psycho-oncology; survivorship; patient reported outcome; chimeric antigen receptor T-cell immunotherapy; evidence based practice center; hereditary tumor syndrome; toddler
Purpose of reviewThis article reviews the current literature on psychosocial care of children with cancer with particular focus on evidence-based standards of care, including developments in systematic distress screening, utilization of patient-reported outcomes, evidence-based interventions, survivorship, palliative care and bereavement.Recent findingsAlthough attention to the psychosocial needs of the child and family is increasingly recognized as an essential element of care for children with cancer, implementing evidence-based care remains suboptimal. Recent efforts have focused on utilizing technology to improve the reach of these interventions and to enhance engagement with special populations, such as adolescents and young adults. Increasing data elucidate the long-term psychological and physical late effects of childhood cancer survivorship and the impact of cancer on siblings and the family. Gaps in clinical care and important directions for future research include the needs of infants and toddlers, overlooked minorities, and patients with hereditary tumor predisposition syndromes, and attention to the psychosocial impact of exciting new treatments, such as autologous chimeric antigen receptor (CAR) T-cell therapy.SummaryThe evidence base for the psychosocial standards of care for children with cancer and their families continues to grow, but more work is needed to successfully implement these standards across pediatric cancer centers.
Wiener L; Devine K A; Thompson A L
Current Opinion in Pediatrics
2020
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<a href="http://doi.org/10.1097/MOP.0000000000000851" target="_blank" rel="noreferrer noopener">10.1097/MOP.0000000000000851</a>
Enhancing Connections-Palliative Care: A Quasi-Experimental Pilot Feasibility Study of a Cancer Parenting Program
child; human; palliative therapy; preschool child; controlled study; hospice; article; child parent relation; adolescent; Self Concept; anxiety; depression; distress syndrome; skill; metastasis; nurse; advanced cancer; feasibility study; disease course; telephone; program impact; psychological adjustment; tumor-related gene
Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connections-Palliative Care (EC-PC) parenting program was developed in response to this gap.
Lewis F M; Loggers E T; Phillips F; Palacios R; Tercyak K P; Griffith K A; Shands M E; Zahlis E H; Alzawad Z; Almulla H A
Journal of palliative medicine
2020
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/10.1089/jpm.2019.0163" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0163</a>
Compassion fatigue, burnout, and compassion satisfaction in pediatric palliative care (PC) providers in the U.S
awareness; burnout; child; Compassion fatigue; conference abstract; coworker; distress syndrome; education; exhaustion; friend; health care personnel; human; injury; life sustaining treatment; linear regression analysis; palliative therapy; prevalence; questionnaire; risk factor; satisfaction with care; self care; social isolation; wellbeing
Purpose: Compassion fatigue (CF) is emotional distress experienced by providers from ongoing contact with patients' suffering. Burnout (BO) is personal distress due to uncontrollable workplace factors that manifest in career dissatisfaction. CF and BO can each lead to emotional exhaustion, depression, frustration, depersonalization, and sense of loss in one's achievements; in healthcare providers, this can adversely affect patient care. Compassion satisfaction (CS) is professional fulfillment derived from caring for others. Pediatric palliative care (PC) providers are continuously exposed to clinical experiences that are physically and emotionally demanding and draining. Therefore, we aimed to determine the prevalence of CF, BO, and CS and identify potential predictors of these phenomena in pediatric PC providers.
Kase S M; Waldman E D; Weintraub A S
Pediatrics
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).
Development of an innovative program to improve provision of palliative and hospice care to children and families in the community: The story of QoLA Kids
cancer patient; cancer prognosis; catchment; child; childhood cancer; conference abstract; controlled study; counselor; distress syndrome; female; Hospice Care; hospital personnel; human; magnet; major clinical study; male; nurse practitioner; outpatient; palliative therapy; patient referral; pediatric hospital; pediatric patient; prognosis; program impact; quality of life; registered nurse; social worker
Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their families; however, hospice services only reach about 10% of eligible children who die in the United States, with the majority of pediatric patients receiving care through adult hospice organizations. Program Design: The Quality of Life for All (QoLA) Kids program, established in August 2012, is an outpatient, community-based pediatric palliative care and hospice program that strives to enhance quality of life for pediatric patients and families, provide care coordination across multiple settings, mitigate physical, psychosocial, and spiritual distress, ensure a comfortable and peaceful death in the patient's preferred setting, and support bereaved family members and hospital staff. The program represents a partnership between two MAGNET-certified pediatric hospitals and a local home health and hospice agency. QoLA Kids comprises an extensive interdisciplinary team including physicians, nurse practitioners, registered nurses, medical social workers, spiritual counselors, child life specialists, and administrative support staff. Patients are enrolled on either the palliative care or hospice arm of the program, with flexibility to transition easily between arms as clinical status and goals of care evolve. Eligibility for the hospice arm necessitates an expected prognosis of 6 months or less left to live. Program Impact: Since programmatic inception nearly 6 years ago, QoLA Kids has served a total of 330 children and families in the local catchment area. Approximately 41% of patients (n=135) were enrolled on the palliative arm, with the remaining 59% enrolled on hospice (n=195). Between 2012-2017, the mean number of days from enrollment to death was 142 days for patients on the hospice arm (n=76) and 288 for patients on the palliative care arm (n=5). The percentage of patients with malignancies who received palliative care prior to death increased from 71% to 97% within 2 years following program implementation. Conclusions/Future Directions: QoLA Kids is an innovative program that facilitates the provision of palliative care and hospice services and resources to children with serious illness and their families in the community. Through this program, children and families have been able to access palliative care services in their community well before the end of life. After program initiation, an increase in the number of palliative care consults was also seen within the pediatric oncology patient population suggesting that the program may provide an incentive for referral to palliative care. Further investigation is needed to identify optimal metrics for ascertaining the physical and psychosocial benefits from this innovative program.
Kiefer A C; Kaye E C; Blazin L J; Baker J N
Pediatrics
2019
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).
Palliative Care in the Pediatric Emergency Department: Findings From a Qualitative Study
article; child; female; human; major clinical study; male; palliative therapy; clinical evaluation; controlled study; critically ill patient; distress syndrome; emergency ward; genetic transcription; intensive care; patient care; pediatric emergency medicine; qualitative research; software; thematic analysis; theoretical study
Study objective: Children with medical complexity represent a fragile population and account for the majority of patients followed in pediatric palliative care. Little is known in regard to the role of the emergency department (ED) in caring for the families of children with medical complexity. Method(s): Semistructured focus groups were held with health care professionals from pediatric emergency medicine, palliative care, complex care, and intensive care to explore their perspective on pediatric palliative care in the ED. Data were transcribed and analyzed with NVivo software, and thematic analysis and theoretic sampling were performed. Result(s): From January to October 2016, 58 participants were interviewed. Difficulties providing pediatric palliative care in the ED are related on the one hand to characteristics specific to the ED, such as its culture and its health care professionals' strong emotional responses when caring for children with medical complexity, and on the other hand to factors extrinsic to the ED; mainly, lack of continuity of care. For critically ill children with unknown goals of care and potential for end of life, professionals in the ED should evaluate the clinical situation, contact known health care teams, remain open to families' preferences, alleviate distressing symptoms, and create a caring environment. Communication between teams is targeted by health care professionals to facilitate and improve patient flow and care. Conclusion(s): Although perspectives differ in regard to how to provide care for pediatric palliative care patients in the ED, several barriers to providing high-quality emergency pediatric palliative care can be overcome. Copyright © 2019 American College of Emergency Physicians
Cote A J; Payot A; Gaucher N
Annals of Emergency Medicine.
2019
<a href="http://doi.org/10.1016/j.annemergmed.2019.03.008" target="_blank" rel="noreferrer noopener">10.1016/j.annemergmed.2019.03.008</a>
Pediatric End-of-life Simulation: Preparing the Future Nurse to Care for the Needs of the Child and Family
child; human; terminal care; article; death; awareness; grief; pediatric patient; simulation; memory; distress syndrome; skill; terminal disease; expectation; nursing student; pediatric nursing
PURPOSE: Preparing a future nurse to respond to the complex and sensitive needs of a child and family during the end-of-life requires more than didactic content in a classroom. During clinical experiences, students may care for children diagnosed with a terminal illness however; it is less likely that a student will have a clinical opportunity to care for a child and their family at the end-of-life. Without having an experience, it is challenging to teach students how to care for the dying child and family including how to appreciate the emotions, thoughts, and expectations when faced with a pediatric death (Lindsay, 2010). DESIGN AND METHODS: The instructional model integrates an end-of-life simulation into an undergraduate pediatric nursing course allowing students to practice caring for a child and their family while developing an understanding of the unique needs of a dying pediatric patient.
Cole M A; Foito K
Journal of Pediatric Nursing
2019
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.2018.09.005" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2018.09.005</a>
The Relationship Between Household Income and Patient-Reported Symptom Distress and Quality of Life in Children With Advanced Cancer: A Report From the PediQUEST Study
pain; poverty; palliative therapy; major clinical study; advanced cancer; outcome assessment; cancer patient; cohort analysis; distress syndrome; human; article; child; female; male; quality of life; prevalence; secondary analysis; household income; patient-reported outcome; highest income group; lowest income group
Background: Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well described. Methods: The Pediatric Quality of Life and Symptoms Technology (PediQUEST) multisite clinical trial evaluated an electronic patient-reported outcome system to describe symptom distress and HRQOL in children with advanced cancer via repeated surveys. The authors performed a secondary analysis of PediQUEST data for those children with available parent-reported household income (dichotomized at 200% of the Federal Poverty Level and categorized as low income [<$50,000/year] or high income [>=$50,000/year]). The prevalence of the 5 most commonly reported physical and psychological symptoms was compared between groups. Multivariable generalized estimating equation models were used to test the association between household income and symptom distress and HRQOL. Results: A total of 78 children were included in the analyses: 56 (72%) in the high-income group and 22 (28%) in the low-income group. Low-income children were more likely to report pain than high-income children (64% vs 42%; P=.02). In multivariable models, children from low-income families demonstrated a uniform trend toward higher total (beta<inf>low-high</inf>=3.1; 95% confidence interval [95% CI], -0.08 to 6.2 [P=.06]), physical (beta=3.8; 95% CI, -0.4 to 8.0 [P=.09]), and psychological (beta=3.46; 95% CI, -1.91 to 8.84 [P=.21]) symptom distress compared with children from high-income families. Low income was associated with a uniform trend toward lower total (beta=-7.9; 95% CI, -14.8, to -1.1 [P=.03]), physical (beta=-11.2; 95% CI, -21.2 to -1.2 [P=.04]), emotional (beta=-5.8; 95% CI, -13.6 to 2.0 [P=.15]), social (beta=-2.52; 95% CI, -9.27 to 4.24 [P=.47]), and school (beta=-9.8; 95% CI, -17.8 to -1.8 [P=.03]) HRQOL. Conclusions: In this cohort of children with advanced cancer, children from low-income families were found to experience higher symptom burden and worse QOL.
Ilowite MF; Al-Sayegh H; Ma C; Dussel V; Rosenberg AR; Feudtner C; Kang TI; Wolfe J; Bona K
Cancer
2018
<a href="http://doi.org/%2010.1002/cncr.31668" target="_blank" rel="noreferrer noopener">10.1002/cncr.31668</a>
Parents' perspectives on losing a child due to life-limiting diagnoses: A population-based study
human; child; female; male; diagnosis; Denmark; palliative therapy; distress syndrome; adult; major clinical study; conference abstract; young adult; quality of life; Wales; malignant neoplasm; questionnaire; cause of death; directory
Background: Approximately, 300 children die in Denmark every year. In order to support future implementation of specialized pediatric palliative care the aim of this study was to investigate the needs, quality of life and severity of distress of parents who lost a child with life-limiting diagnoses. Method: A register-based study identified causes of death in children 0-18 years who died in the period 2012-2014 in Denmark. Potential palliative diagnoses were identified through a "Directory" elaborated in Wales1. Children who died the first day of life were excluded. A selfadministered questionnaire was used to assess severity of distress, needs and quality of life of parents to deceased children. We used a modified version of the questionnaire "To lose a child"2. Results: In total, 951 children died. Out of these 409 children were identified with life-limiting diagnoses. Of these 83 children (20%) died the first day of life. Thus, parents of 326 children were invited to participate and received a questionnaire. The response-rate was 41% and it ranged from 48% among parents of children with cancer to 20% among parents of children with circulatory diagnoses. Parents who lost their child >32 days after birth were more likely to participate (43%). Conclusion: We have received a unique material about parents' perspectives on losing a child with life-limiting diagnoses. The relatively low response-rate was expected due to the sensitive nature of the questionnaire; however, future planning of specialized pediatric palliative care in Denmark can be enriched by the parents' perspectives.
Lykke C; Ekholm O; Schmiegelow K; Olsen M; Sjogren P
Palliative Medicine
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/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</a>
Involvement of nurses in end-of-life discussions for severely disabled children
intellectual impairment; nurse; qualitative research; Child; Disabled Children; Only Child; human experiment; quality of life; retrospective study; distress syndrome; morality; semi structured interview; child; human; female; male; article; clinical article; handicapped child
Background: In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD discussions is largely unknown. The objective of this research was to investigate the involvement in the hospital of nurses in discussions with parents and physicians about EoLDs for children with PIMD. Method: In a retrospective, qualitative study, we conducted semi-structured interviews with the nurses of 12 children with PIMD for whom an EoLD was made within the past 2 years. Results: Parents primarily discuss EoLDs with nurses before and after the meeting with the physician. Nurses who were involved in EoL discussions with parents and physicians assisted them by giving factual information about the child and by providing emotional support. Some nurses, especially nurses from ID-care services, were not involved in EoL discussions, even if they had cared for the child for a long period of time. Some of the nurses had moral or religious objections to carrying out the decisions. Conclusion: Most nurses were not involved in EoL discussions with parents and physicians in the hospital. Excluding nurses from EoL discussions can cause them moral distress. The involvement of nurses in EoL discussions for children with PIMD should be improved, especially by involving nurses from ID-care services. Because these nurses are usually familiar with the child, they can be valuable sources of information about the child's quality of life.
Zaal-Schuller IH; Willems DI; Ewals F; van Goudoever JB; de Vos MA
Journal of Intellectual Disability Research.
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/10.1111/jir.12473" target="_blank" rel="noreferrer noopener">10.1111/jir.12473</a>
Enhancing resilience in hospitalized children and adolescents
hospitalized child; Anxiety; biofeedback; California; Child; clinical psychology; Comorbidity; complication; distress syndrome; Female; Hospitalization; Human; Male; Mental Health; music; pain; Palliative therapy; pet therapy; PostTraumatic Stress Disorder; psychiatrist; psychosocial care; Socialization; wellbeing
Objectives: This presentation will describe a collaborative intervention that can enhance resilience in hospitalized patients when they are struggling with the emotional sequelae of their medical illness. The presentation will discuss the specialty services at the University of California, San Francisco, Benioff Children's Hospital (UCSF BCH) that work cooperatively to support salutogenesis (the origin of health), in contrast to pathogenesis. The efficacy of our multidisciplinary approach will be demonstrated through descriptions of changes in patients' mental status and subjective reports of distress from patients and parents. Methods: This seminar will present our multidisciplinary approach to enhancing well-being and supporting resilience. The presentation will describe the collaboration of several complementary specialties. Primary source material and anecdotal reports from clinical cases will be presented from these medical, psychological, and psychosocial disciplines. Results: At UCSF BCH, specialists play complementary roles in the effort to support the emotional well-being of hospitalized patients. The child and adolescent consultation-liaison psychiatrist provides insight into psychiatric comorbidities that may be contributing to distress and interfere with coping. Pharmacologic interventions target the symptoms of these comorbid illnesses. Pediatric palliative care physicians address the physiologic symptoms endured by children with serious medical illnesses. Clinical psychologists help to identify the feedback loop between anxiety and pain and enhance a sense of safety through empirically validated interventions for anxiety and traumatic stress. The Child Life Specialist's role includes preparation for procedures; creating and implementing a coping plan for individual procedures and overall hospitalization through art and music; and providing psychosocial support through socialization, medical play, pet therapy, and biofeedback. Conclusions: Diverse disciplines can work collaboratively to support the overall well-being of the hospitalized child and his/her family members by effectively promoting coping. This multidisciplinary approach to enhancing resilience enables children to thrive even if their illnesses are life-limiting.
2017
Ihle EC
Journal Of The American Academy Of Child And Adolescent Psychiatry
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.jaac.2017.07.064" target="_blank" rel="noreferrer">10.1016/j.jaac.2017.07.064</a>
Challenges to code status discussions for pediatric patients
Child; comfort; distress syndrome; Female; Human; major clinical study; Male; morality; nurse; pediatric ward; Questionnaire; resident; self report; student; vision
Objectives: In the context of serious or life-limiting illness, pediatric patients and their families are faced with difficult decisions surrounding appropriate resuscitation efforts in the event of a cardiopulmonary arrest. Code status orders are one way to inform end-of-life medical decision making. The objectives of this study are to evaluate the extent to which pediatric providers have knowledge of code status options and explore the association of provider role with (1) knowledge of code status options, (2) perception of timing of code status discussions, (3) perception of family receptivity to code status discussions, and (4) comfort carrying out code status discussions. Design: Nurses, trainees (residents and fellows), and attending physicians from pediatric units where code status discussions typically occur completed a short survey questionnaire regarding their knowledge of code status options and perceptions surrounding code status discussions. Setting: Single center, quaternary care children's hospital. Measurements and main results: 203 nurses, 31 trainees, and 29 attending physicians in 4 high-acuity pediatric units responded to the survey (N = 263, 90% response rate). Based on an objective knowledge measure, providers demonstrate poor understanding of available code status options, with only 22% of providers able to enumerate more than two of four available code status options. In contrast, provider groups self-report high levels of familiarity with available code status options, with attending physicians reporting significantly higher levels than nurses and trainees (p = 0.0125). Nurses and attending physicians show significantly different perception of code status discussion timing, with majority of nurses (63.4%) perceiving discussions as occurring "too late" or "much too late" and majority of attending physicians (55.6%) perceiving the timing as "about right" (p<0.0001). Attending physicians report significantly higher comfort having code status discussions with families than do nurses or trainees (p0.0001). Attending physicians and trainees perceive families as more receptive to code status discussions than nurses (p<0.0001 and p = 0.0018, respectively). Conclusions: Providers have poor understanding of code status options and differ significantly in their comfort having code status discussions and their perceptions of these discussions. These findings may reflect inherent differences among providers, but may also reflect discordant visions of appropriate care and function as a potential source of moral distress. Lack of knowledge of code status options and differences in provider perceptions are likely barriers to quality communication surrounding end-of-life options.
Kruse KE; Batten J; Constantine ML; Kache S; Magnus D
Plos One
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/10.1371/journal.pone.0187375" target="_blank" rel="noreferrer">10.1371/journal.pone.0187375</a>
Moral distress in PICU and neonatal ICU practitioners: A cross-sectional evaluation
distress syndrome; health practitioner; morality; neonatal intensive care unit; pediatric intensive care unit; Adult; Article; burnout; correlation analysis; cross-sectional study; Demography; Female; Hospital care; Human; Intensive Care; linear regression analysis; major clinical study; Male; Maslach Burnout Inventory Depersonalization Subscale; Middle Aged; Mishel Parent Perception of Uncertainty Scale; nurse; outcome assessment; physician; priority journal; Prognosis; Questionnaire; Rating Scale; Revised Moral Distress Scale; Terminal Care; tertiary care center; Uncertainty; work; Young Adult
Objectives: To measure the level of moral distress in PICU and neonatal ICU health practitioners, and to describe the relationship of moral distress with demographic factors, burnout, and uncertainty. Design: Cross-sectional survey. Setting: A large pediatric tertiary care center. Subjects: Neonatal ICU and PICU health practitioners with at least 3 months of ICU experience. Interventions: A 41-item questionnaire examining moral distress, burnout, and uncertainty. Measurements and Main Results: The main outcome was moral distress measured with the Revised Moral Distress Scale. Secondary outcomes were frequency and intensity Revised Moral Distress Scale subscores, burnout measured with the Maslach Burnout Inventory depersonalization subscale, and uncertainty measured with questions adapted from Mishel's Parent Perception of Uncertainty Scale. Linear regression models were used to examine associations between participant characteristics and the measures of moral distress, burnout, and uncertainty. Two-hundred six analyzable surveys were returned. The median Revised Moral Distress Scale score was 96.5 (interquartile range, 69-133), and 58% of respondents reported significant work-related moral distress. Revised Moral Distress Scale items involving end-of-life care and communication scored highest. Moral distress was positively associated with burnout (r<sup>2</sup> = 0.27; p < 0.001) and uncertainty (r<sup>2</sup> = 0.04; p = 0.008) and inversely associated with perceived hospital supportiveness (r<sup>2</sup> = 0.18; p < 0.001). Nurses reported higher moral distress intensity than physicians (Revised Moral Distress Scale intensity subscores: 57.3 vs 44.7; p = 0.002). In nurses only, moral distress was positively associated with increasing years of ICU experience (p = 0.02) and uncertainty about whether their care was of benefit (r<sup>2</sup> = 0.11; p < 0.001) and inversely associated with uncertainty about a child's prognosis (r<sup>2</sup> = 0.03; p = 0.03). Conclusions: In this single-center, cross-sectional study, we found that moral distress is present in PICU and neonatal ICU health practitioners and is correlated with burnout, uncertainty, and feeling unsupported.
Larson CP; Dryden-Palmer KD; Gibbons C; Parshuram CS
Pediatric Critical Care Medicine
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/10.1097/PCC.0000000000001219" target="_blank" rel="noreferrer">10.1097/PCC.0000000000001219</a>
Preferences of advanced cancer patients for communication on anticancer treatment cessation and the transition to palliative care
Advanced Cancer; Cancer Patient; Cancer Therapy; Female; Male; Palliative Therapy; Cancer Localization; Child; Diagnosis; Distress Syndrome; Doctor Patient Relation; Human; Life Expectancy; Major Clinical Study; Medical Record; Multiple Regression; Paternalism; Symptom
The aim of this study was to clarify advanced cancer patients' communication preferences regarding ending anticancer treatment and transitioning to palliative care, and to explore variables associated with these preferences. Participants were 106 Japanese cancer patients who had been informed at least 1 week earlier of the cessation of their anticancer treatment. They completed a survey measuring their preferences for communication about ending anticancer treatment and transitioning to palliative care, as well as their demographic characteristics. Medical records were also examined to investigate medical characteristics. Results of the descriptive analysis indicated that patients strongly preferred their physicians to listen to their distress and concerns (96%), assure them that their painful symptoms would be controlled (97.1%), and explain the status of their illness and the physical symptoms that would likely occur in the future (95.1%). Multiple regression analyses indicated the factors associated with these preferences: telling patients to prepare mentally, and informing them of their expected life expectancy, was associated with cancer site; sustaining hope was associated with cancer site and children; and empathic paternalism was associated with duration since cancer diagnosis. The majority of patients preferred their physicians to be realistic about their likely future and to be reassured that their painful symptoms would be controlled. For patients with certain cancer sites, those with children, and those more recently diagnosed, physicians should communicate carefully and actively by providing information on life expectancy and mental preparation, sustaining hope, and behaving as empathic paternalism.
Umezawa S; Fujimori M; Matsushima E; Kinoshita H; Uchitomi Y
Psycho-oncology
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/10.1002/pon.4476" target="_blank" rel="noreferrer">10.1002/pon.4476</a>
Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners
Cancer Epidemiology; General Practitioner; Palliative Therapy; Child; Controlled Study; Cross-sectional Study; Death; Distress Syndrome; Doctor Patient Relation; Fatigue; Human; Human Versus Animal Comparison; Major Clinical Study; Nonhuman; Pain; Panic; Powerlessness; Questionnaire; Sadness; Symptom; Thermometer
Context: Although a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. Objectives: The objective of this study was to explore the perspectives of GPs who care for children with advanced-stage cancer in a home-based setting. Methods: In this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death, and 4) impact of having provided palliative care, scored on distress thermometer (range 0-10). Results: A total of 112 GPs (78%) responded, and 91 GPs completed the questionnaire for 93 patients. The median interval between the child's death and completing the questionnaire was seven years. The most prevalent symptoms reported in the patients were fatigue (67%) and pain (61%). Difficulties with communicating with (14%), coordinating with (11%), collaborating with (11%), and contacting (2%) fellow members of the multidisciplinary treatment team were rare. Hectic (7%) and shocking (5%) situations and panic (2%) around the child's death were rare. GPs reported feelings of sadness (61%) and/or powerlessness (43%) around the time of the patient's death, and they rated their own distress level as relatively high during the terminal phase (median score 6, range 0-9.5). The majority of GPs (94%) reported that they ultimately came to terms with the child's death. Conclusion: In general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among health care professionals is generally positive and is considered important. Finally, although the death of a pediatric patient has a profound impact on the GP, the majority of GPs eventually come to terms with the child's death. Copyright _ 2017 American Academy of Hospice and Palliative Medicine.
van der Geest IMM; Bindels PJE; Pluijm SMF; Michiels EMC; van der Heide A; Pieters R; Darlington ASE; van den Heuvel-Eibrink MM
Journal Of Pain And Symptom Management
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.jpainsymman.2016.09.012" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.09.012</a>
"His ears are so soft!" Animal-assisted interventions in oncology settings: Implications for oncology social work practice
Clinical Practice; Ear; Oncology; Skill; Social Work Practice; 50-56-6 (oxytocin); 51-61-6 (dopamine); 62-31-7 (dopamine); 54577-94-5 (oxytocin); 60118-07-2 (endorphin); Adult; Animal Experiment; Animal Model; Anxiety; Blood Pressure; Cancer Patient; Cancer Therapy; Cerebrovascular Accident; Distress Syndrome; Dog; Dopamine; Endogenous Compound; Endorphin; Family Study; Female; Gene Expression; Happiness; Heart Rate; Hospice; Hospital Patient; Human; Human Versus Animal Comparison; Infusion; Male; Narrative; Nonhuman; Oxytocin; Pain; Palliative Therapy; Pet Therapy; Program Development; Recreation; Social Support; Storytelling; Symptom; Total Quality Management; Trust; Volunteer; Waiting Room
Content: The use of recreational, expressive, and integrative methods of providing supportive care to patients and families coping with cancer is growing in cancer treatment settings. One such method is animal-assisted interventions (AAI). From the clinic to the infusion suite, to the palliative care office, and to the inpatient hospice, the presence of therapy animals provides an another layer of therapeutic intervention to assist in coping with cancer. AAI can provide cancer patients with an opportunity for emotional support, diversion, recreation, sensory integration/tactile benefit, social support, companionship, and relief of distress and symptoms including pain, depression, anxiety, and isolation. Research also suggests that the simple act of petting a dog can lower heart rate and blood pressure (Friedman, 2015), as well as increase levels of oxytocin, dopamine, and endorphins (Uyemura, 2013). Oxytocin influences happiness and trust in individuals. "Oxytocin has some powerful effects for us in the body's ability to be in a state of readiness to heal.so it predisposes us to an environment in our bodies where we can be healthier" (http://www.npr.org/sections/health-shots/2012/03/09/146583986/ pet-therapy-how-animals-and-humans-heal-each-other). In addition, the therapy animal serves as a vehicle of communication, narrative, and storytelling. Imagine a patient sitting anxiously in the waiting room. He or she strokes the therapy dog gently and is taken to another time and place without cancer. He or she reflects on his or her own dog's roles in his or her life, how he or she rescued the dog, plays with the dog, sleeps with the dog. He or she is distracted, relaxed, and utilizing his or her own story to invoke feelings of happiness, normalcy, and hope. This presentation will examine the history, function, and roles of animal-assisted therapy and activities in various settings. The benefits of AAI with cancer patients (both adults and children) as well as with oncology professionals will also be presented. AAI as a method of integrative supportive oncology therapy will be addressed. The benefits of AAI as well as barriers and limitations for these programs in oncology settings will be reviewed. We will explore AAI program development and evaluation through presentation of results from quality improvement surveys completed by program participants. Suggestions for program development, volunteer recruitment and retention, and therapy dog support will also be discussed. Case presentations of AAI in action from various oncology settings will be a highlight of this presentation.
Bach C
Journal Of Psychosocial Oncology
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).
<a href="http://doi.org/10.1080/07347332.2016.1147913" target="_blank" rel="noreferrer">10.1080/07347332.2016.1147913</a>
Palliative Care
Neoplasm; Palliative Therapy; 73-78-9 (lidocaine); 76-99-3 (methadone); 103-90-2 (paracetamol); 125-56-4 (methadone); 137-58-6 (lidocaine); 297-88-1 (methadone); 437-38-7 (fentanyl); 1095-90-5 (methadone); 8002-76-4 (opiate); 8008-60-4 (opiate); 12794-10-4 (benzodiazepine); 23142-53-2 (methadone); 24847-67-4 (lidocaine); 53663-61-9 (opiate); 56934-02-2 (lidocaine); 60142-96-3 (gabapentin); Acute Stress Disorder; Alcohol Consumption; Anticonvulsive Agent; Appetite; Benzodiazepine; Corticosteroid; Distress Syndrome; Dyspnea; Fentanyl; Gabapentin; Hair Loss; Health Care Personnel; Health Care System; Hospital; Human; Intensive Care Unit; Lidocaine; Major Depression; Medical Staff; Methadone; Mortality; Nausea And Vomiting; Obesity; Opiate; Paracetamol; Paralysis; Patient Care Planning; Priority Journal; Prostaglandin/ec [endogenous Compound]; Quality Of Life; Tracheostomy
Cancer is a leading cause of death in adolescents and young adults (AYAs) Wiener et al. (Pediatr Blood Cancer 60(5):715-718, 2013). Though most AYAs will survive, cancer will become incurable in 10-40 % Schrijvers and Meijnder (Cancer Treat Rev 33(7):616-621, 2007). Although the general philosophies of palliative care apply to AYAs, developmental considerations are unique to this group (Ferrari et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4850-4857, 2010); Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The interaction of psychosocial, emotional, physical, and existential issues is essential to consider (Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The gaps in care experienced on both sides of the healthcare system between pediatric and adult medicine can be particularly impactful when delivering palliative care. The benefit of a multidisciplinary palliative care approach is widely appreciated as is the need to begin the process early in order to develop a trusting relationship (Wiener et al. Pediatr Blood Cancer 60(5):715-718, 2013; Baker et al. Pediatr Clin N Am 55(1):223-250, 2008; Ferris et al. J Clin Oncol Off J Am Soc Clin Oncol 27(18):3052-3058). Honest communication which supports autonomy is essential in discussions of their goals, worries, risks versus benefits of treatment, and advanced care planning (Clark and Fasciano Am J Hosp Palliat Care 32(1):101-111, 2015; Christenson et al. J Pediatr Health Care Off Publ Natl Assoc Pediatr Nurse Assoc Pract 24(5):286-291, 2010; Linebarger et al. Pediatr Clin N Am 61(4):785-796, 2014).
Wasilewski-Masker K; Howk T; Connelly E; Postovsky S; Brill P; Wrammert KC; Pillai R
Pediatric Oncology
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="https://doi.org/10.1007/978-3-319-33679-4_31" target="_blank" rel="noreferrer">10.1007/978-3-319-33679-4_31</a>
Neonatal Palliative Care
Palliative Therapy; Basic Needs; Comfort; Distress Syndrome; Follow Up; Grief; Human; Newborn; Practice Guideline; Prognosis; Satisfaction; Terminal Care
PURPOSE OF REVIEW: A significant number of newborns are affected by life-limiting or life-threatening conditions. When prolongation of survival is no longer a goal, or prognosis is uncertain, a plan of care focused on the infant's comfort is essential. The aim of this article is to review the most recent and relevant literature regarding neonatal palliative care (NPC). RECENT FINDINGS: A variety of perinatal and NPC programs are described, but most programs focus exclusively on end-of-life care. Moreover, there is a great need to standardize practices and obtain follow-up quality measures.Guidelines to address infants' basic needs, to achieve a state of comfort, are proposed. A multidisciplinary team addressing the infants' medical and nonmedical needs, parental grieving process, and providers' distress is recommended. SUMMARY: NPC is a unique multidisciplinary approach for the care of newborns affected by life-limiting or complex medical conditions with uncertain prognosis. Standardized guidelines should be implemented with the goal of achieving a state of comfort for newborns throughout the course of illness. Further studies are warranted to assess whether NPC effectively promotes newborns' comfort and parents and providers' satisfaction. Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.
Parravicini E
Current Opinion In Pediatrics.
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).
10.1097/MOP.0000000000000464