"The worst journey of our lives": parents' experiences of a specialised paediatric retrieval service
Child; Humans; Intensive Care Units; Pediatric; retrospective studies; Nonparametric; Statistics; ICU Decision Making; Parents/psychology; London; Consumer Satisfaction/statistics & numerical data; Transportation of Patients/standards
In this retrospective study, a sample of 233 parents were surveyed, by means of a postal questionnaire, about their experience of a specialised paediatric retrieval service (median time interval after child's retrieval=10 months). Although all parents were routinely provided with written information about the retrieval service, only 46% remember receiving it. Also, although generally high, satisfaction ratings relating to the period of the child's transit were significantly lower (P<0.005) than those relating to the other stages of the transfer. Two main reasons were given by parents for their dissatisfaction: distress at being separated from their critically ill child and logistic problems locating and parking at the new hospital. Implications for future service provision are considered.
2003
Colville G; Orr F; Gracey D
Intensive and Critical Care 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/10.1016/s0964-3397(03)00022-3" target="_blank" rel="noreferrer">10.1016/s0964-3397(03)00022-3</a>
“Give them the door but don’t push them through it”: Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine
Family Attitudes; palliative care; pediatric; pediatric palliative care; pediatric palliative medicine; physicians; qualitative; religious care; spiritual care
Little is known about pediatric caregivers’ perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S care. Participants were 20 primary caregivers whose children were hospitalized and receiving palliative care services. Interviews were audio recorded, transcribed verbatim, and analyzed using constant comparative methods. Three recurrent themes emerged regarding physician-led R/S care: (1) Most caregivers view providing R/S care as a positive sign of physician empathy, while a minority (3/20) prefer to keep R/S and medical care separate, (2) many caregivers prefer R/S care from a physician with whom they have a close relationship and/or share a faith background, and (3) physicians should open the door, but allow families to lead conversations about R/S care. Caregivers have mixed perceptions on physicians engaging in R/S care; most prefer that families set the direction of R/S care for themselves and their loved ones. Physicians should be trained to evaluate families’ spiritual backgrounds and needs in ways that respectfully open the door to these conversations.
McNamara L C; Okoniewski W; Maurer S H; Moehling K; Hall D E; Schenker Y
Journal of Religion and Health
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/10.1007/s10943-020-00991-z" target="_blank" rel="noreferrer noopener">10.1007/s10943-020-00991-z</a>
[French law related to patient's rights and end of life: pediatric intensive care unit's health professionals' opinions]
Child; Humans; Intensive Care Units; Palliative Care; patient care team; Terminal Care; Attitude of Health Personnel; Withholding Treatment; Resuscitation Orders; Double Effect Principle; Suicide; Patient Rights; Pediatric; Health Surveys; France; Assisted; Health Care; Quality Assurance
INTRODUCTION AND OBJECTIVES: To identify the knowledge of caregivers of pediatric intensive care units (PICUs) on the French law related to patients' rights and end of life, their views on withholding/withdrawing life-sustaining treatment (WWLST) decisions, and their feelings about how these decisions were made and implemented. MATERIALS AND METHODS: A multicenter survey in 24 French PICUs during the fourth trimester 2010. RESULTS: One thousand three hundred and thirty-nine professional healthcare workers (1005 paramedics and 334 physicians) responded. Over 85% of caregivers had good knowledge of the WWLST decision-making processes required by law. More than 80% of caregivers accepted mechanical ventilation, hemodiafiltration, or hemodynamic support withdrawal or withholding. Nevertheless, the withdrawal of artificial nutrition and hydration generated reluctance or opposition for the majority of respondents. While paramedics' participation in the decision-making process was deemed necessary by all caregivers, paramedics found more often than physicians that they were insufficiently involved. The quality of end-of-life care was judged very positively by caregivers. The answers on how WWLST was applied suggest very different interpretations of the law. Some caregivers respect the principles of palliative care as stated in the public health code and 40% of doctors and 64% of caregivers consider it "acceptable" to hasten death if resulting from a collaborative decision-making process. CONCLUSION: This study is the first to show that caregivers of French PICUs have good knowledge of the French law concerning the end of life. Yet, there is still confusion about the limits of practice during the end-of-life period.
2014-01
de Saint Blanquat L; Cremer R; Elie C; Lesage F; Dupic L; Hubert P; pour le Groupe francophone de réanimation et urgences pédiatriques (GFRUP)
Archives De Pediatrie
2014
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.arcped.2013.10.018" target="_blank" rel="noreferrer">10.1016/j.arcped.2013.10.018</a>
A descriptive study of children dying in the pediatric intensive care unit after withdrawal of life-sustaining treatment
Child; Female; Humans; Male; Intensive Care Units; Palliative Care; Euthanasia; Patient Participation; Time Factors; Pediatric; adolescent; Preschool; infant; retrospective studies; ICU Decision Making; Parents/psychology; Analgesics/administration & dosage; Hypnotics and Sedatives/administration & dosage; Passive; Neuromuscular Blockade
OBJECTIVE: To examine physiologic and therapeutic changes following withdrawal of life-sustaining treatment in children. DESIGN: Retrospective chart review. SETTING: University-affiliated tertiary care pediatric hospital. PATIENTS: All patients who had life-sustaining treatment withdrawn over a 5-yr period. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: A total of 125 charts were examined to obtain 50 in which the terminal event preceding death was withdrawal of life-sustaining treatment. Data are expressed as median (1st, 3rd quartiles). Median hospital stay before death was 20 days (1st and 3rd quartiles, 8 and 30). Median time from decision to withdraw life-sustaining treatment to actual withdrawal was 30 mins (1st and 3rd quartiles, 10 and 180). All interventions were simultaneously discontinued in 80% of patients with mechanical ventilation followed by vasopressors being most common. No patients had stepwise reduction in ventilator rate before discontinuing the mechanical ventilation. Devices were rarely removed from patients including endotracheal tubes. Time from withdrawal of life-sustaining treatment to death was 15 mins (5, 30); only seven patients took >60 mins to die. Multivariable analysis (Kruskal-Wallis test) of various factors revealed simultaneous withdrawal of life-sustaining treatment, female gender, and not having received renal therapy as hastening death. CONCLUSIONS: Forgoing life-sustaining treatment in a small cohort of children at a single institution follows a pattern: Most cases occur after prolonged intensive care unit stays, withdrawal of treatment occurs almost immediately after the decision to withdraw, most treatments are withdrawn simultaneously rather than sequentially, and most patients die within minutes of life-sustaining treatment cessation. This is the first pediatric study to report the time to death after withdrawal of life-sustaining treatment and factors associated with shorter time to death in children.
2004
Zawistowski CA; DeVita MA
Pediatric Critical Care Medicine
2004
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Journal Article
<a href="http://doi.org/10.1097/01.pcc.0000123547.28099.44" target="_blank" rel="noreferrer">10.1097/01.pcc.0000123547.28099.44</a>
A Investigation into Hope, Self-Efficacy, Distress and Uncertainty in Parents Who Have A Child with A Life-Threatening or Life-Limiting Illness
Children; Families; Hope; Life-limiting illness; Life-threatening illness; Self-efficacy; article; care; behavior; caregiver; child; controlled study; demographics; distress; syndrome; exploratory; research; financial management; human; parental leave; pediatric; nurse; quantitative analysis; self concept; uncertainty
PURPOSE: To examine the experiences of parents who are caring for a child with a life-threatening or life-limiting illness (LTI/LLI) including levels of uncertainty, distress, hope, and self-efficacy to determine if there are significant variations with respect to demographic characteristics. DESIGN AND METHODS: Data for this analysis are derived from a quasi-experimental evaluation of a support intervention with a purposeful sample of parental caregivers from a western Canadian province. Participants completed a demographic survey and four quantitative measures at baseline and following use of the support intervention. RESULT(S): Many parents had high scores of hope and self-efficacy, with highest levels of hope amongst parents who could stay at home with their children, and higher self-efficacy expressed by parents without financial concerns. Increased levels of uncertainty and distress were found amongst parents without other children living in the home, and those with financial concerns, respectively. CONCLUSION(S): This exploratory analysis found that many parents experienced clinically significant distress along with uncertainty. The results determined that caring for children in the home other than the ill child significantly decreased uncertainty. High levels of parental hope and self-efficacy were frequently identified, with variations reflecting differences in social roles and stressors. The results contribute to an increased understanding of the value of support resources including parental leave and financial support. PRACTICE IMPLICATIONS: Pediatric nurses may consider adopting an approach to caring for families with children in treatment for LLIs/LTIs that gives high priority to promoting hope and self-efficacy while ensuring access to support resources. Copyright © 2022 Elsevier Inc. All rights reserved.
Spurr S; Bally J; Burles M; McHaro K
Journal of Pediatric 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/10.1016/j.pedn.2022.07.002">10.1016/j.pedn.2022.07.002</a>
A Mixed-Methods Exploration of Pediatric Intensivists' Attitudes toward End-of-Life Care in Vietnam
end of life; Icu; pediatric; Vietnam
BACKGROUND: Although the need for palliative care is gaining recognition in Southeast Asia, knowledge about how decisions are made for children near the end of life remains sparse. OBJECTIVE: To explore pediatric intensivists' attitudes and practices surrounding end-of-life care in Vietnam. METHODS: This is a mixed-methods study conducted at a tertiary pediatric and neonatal intensive care unit in Hanoi. Physicians and nurses completed a quantitative survey about their views on end-of-life care. A subset of these providers participated in semistructured interviews on related topics. Analysis of surveys and interviews were conducted. Results were triangulated. RESULTS: Sixty-eight providers (33 physicians and 35 nurses) completed the quantitative survey, and 18 participated in interviews. Qualitative data revealed three overarching themes with numerous subthemes and supporting quotations. The first theme was factors influencing providers' decision-making process to escalate or withdraw treatment. Quantitative data showed that 40% of providers valued the family's ability to pay to continue life-sustaining treatment. Second, communication dynamics in decision making were highlighted; 72% of providers would be willing to override a family's wishes to withdraw life-sustaining treatment. Third, provider perceptions of death varied, with 68% regarding their patients' deaths as a personal failure. CONCLUSIONS: We elicited and documented how pediatric intensivists in Vietnam currently think about and provide end-of-life care. These findings indicate a need to strengthen palliative care training, increase family involvement in decision making, implement standardized and official do-not-resuscitate documentation, and expand pediatric hospice services at the individual, hospital, and national levels in Vietnam.
Fadadu P P; Liu J C; Schiltz B M; Xoay T D; Phuc P H; Kumbamu A; Ouellette Y
Journal of Palliative Medicine
2019
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<a href="http://doi.org/10.1089/jpm.2018.0496" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0496</a>
A mother's perspective: the power of holistic care for the terminally ill child
Child; Humans; mothers; Terminal Care; Terminally Ill; Family; Adult; Mother-Child Relations; Life Change Events; Hospitals; Leukemia; Holistic Nursing; Altruism; Pediatric; Gift Giving
This is the account of a mother who lived through the 5-year experience of watching her child fight and finally succumb to a genetic disorder. Lessons about caring practices and insights into the needs of patients and families are emphasized.
2013-04
Dolan P
Holistic Nursing Practice
2013
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Journal Article
<a href="http://doi.org/10.1097/HNP.0b013e318280f83c" target="_blank" rel="noreferrer">10.1097/HNP.0b013e318280f83c</a>
A Multimodal Mindfulness Training to Address Mental Health Symptoms in Providers Who Care for and Interact With Children in Relation to End-of-Life Care
Humans; Intensive Care Units; Intensive Care Units; Middle Aged; Female; Male; Adult; Aged; Pediatric; Neonatal; Terminal Care/px [Psychology]; Mental Health; Burnout; Health Personnel/px [Psychology]; Mindfulness/mt [Methods]; Clergy/px [Psychology]; Depression/px [Psychology]; Social Workers/px [Psychology]; Professional/px [Psychology]
AIM: Medical providers may face unique emotional challenges when confronted with the suffering of chronically ill, dying, and bereaved children. This study assessed the preliminary outcomes of participation in a group-based multimodal mindfulness training pilot designed to reduce symptoms of burnout and mental health symptoms in providers who interact with children in the context of end-of-life care., METHODS: A total of 13 medical providers who care for children facing life-threatening illness or bereaved children participated in a 9-session multimodal mindfulness session. Mental health symptoms and burnout were assessed prior to the program, at the program midpoint, and at the conclusion of the program., RESULTS: Participation in the pilot was associated with significant reductions in depressive and posttraumatic stress disorder (PTSD) symptoms among providers ( P < .05)., CONCLUSION: Mindfulness-based programs may help providers recognize and address symptoms of depression and PTSD. Additional research is needed to enhance access and uptake of programming among larger groups of participants.
O'Mahony S; Gerhart J; Abrams I; Greene M; McFadden Rory; Tamizuddin S; Levy MM
The American journal of hospice & palliative care
2017
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<a href="http://doi.org/10.1177/1049909116660688" target="_blank" rel="noreferrer noopener">10.1177/1049909116660688</a>
A Randomized Clinical Trial Of Adolescents With Hiv/aids: Pediatric Advance Care Planning
Advance Care Planning; Congruence; Decision-making; End-of-life; Palliative Care; Pediatric
The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14-21 years with HIV/AIDS and their families were randomized (N = 105 dyads) to three-60-minute sessions scheduled one week apart: either the pACP intervention (survey administered independently, facilitated conversation with adolescent and family present, completion of legal advance directive document with adolescent and family present) or an active control (developmental history, safety tips, nutrition and exercise education). This longitudinal, single-blinded, multi-site, randomized controlled trial was conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities. The Statement of Treatment Preferences measured adolescent/family congruence in EOL treatment preferences at immediately following the facilitated pACP conversation (Session 2), and at 3-month post-intervention. The mean age of adolescent participants was 18 years (range 14-21 years); 54% were male; and 93% were African-American. One-third had an AIDS diagnosis. Immediately post-intervention the Prevalence Adjusted Bias Adjusted Kappa showed substantial treatment preference agreement for pACP dyads compared to controls (High burden/low chance of survival, PABAK = 0.688 vs. 0.335; Functional impairment, PABAK = 0.687 vs. PABAK= 0.34; Mental impairment, PABKA = 0.717 vs. 0.341). Agreement to limit treatments was greater among intervention dyads than controls (High burden: 14.6% vs. 0%; Functional impairment = 22.9% vs. 4.4%; and Mental impairment: 12.5% vs. 4.4%). Overall treatment preference agreement among pACP dyads was high immediately post-intervention, but decreased over time. In contrast, treatment agreement among control dyads was low and remained low over time. As goals of care change over time with real experiences, additional pACP conversations are needed.
Lyon Maureen E; D'Angelo Lawrence J; Dallas Ronald H; Hinds S; Garvie A; Wilkins Megan L; Garcia A; Briggs Linda; Flynn Patricia M; Rana Sohail R; Cheng Yao Iris; Wang Jichuan
Aids Care
2017
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10.1080/09540121.2017.1308463
A Retrospective Examination of Home PCA Use and Parental Satisfaction With Pediatric Palliative Care Patients
pediatric; palliative care; quality of life; Parental Satisfaction; patient-controlled analgesia
INTRODUCTION: Home Patient-Controlled Analgesia (PCA) is an effective and often preferred therapy for the treatment of chronic pain symptoms in the pediatric palliative care patient. There is little previous research of patient experience with Home PCA. The purpose of this study was to investigate use of home PCA devices in pediatric patients to inform palliative care providers considering an alternative management option for the treatment of end-of-life or chronic pain. METHODS: A chart review was performed of patients prescribed home PCA. Surveys were sent to patients' guardians/caregivers. Questions referred to caregiver impression/satisfaction with information provided regarding use of the PCA machine, the medication used, the benefits and risks of PCA, monitoring of patient pain level and alertness, machine efficacy, and fears and concerns. RESULTS: Thirty-four patients met inclusion criteria, and 18 patient families completed surveys. Demographic data showed that the majority were Caucasian and had a cancer diagnosis. Patient age and duration of home PCA use varied greatly. Overall, participants were satisfied with information received and felt positively about home PCA, albeit expressing concerns. The majority described the machine as easy to use and were satisfied with their child's pain management and level of alertness. CONCLUSION: Responses indicated that home PCA is a manageable and effective alternative to traditional analgesic medications for management of chronic pain in the pediatric patient.
Grossoehme DH; Brown M; Richner G; Zhou SM; Friebert S
The American journal of hospice & palliative care
2021
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<a href="http://doi.org/10.1177/10499091211034421" target="_blank" rel="noreferrer noopener">10.1177/10499091211034421</a>
A Review of the Integrated Model of Care: An Opportunity to Respond to Extensive Palliative Care Needs in Pediatric Intensive Care Units in Under-Resourced Settings
Humanities; pediatric intensive care; Child; Health Resources; Humans; Intensive Care Units; Only Child; Palliative Care; Pediatric; pediatric palliative care; child; consultative model; Humanism; integrated model of care; low-resource settings; pediatric critical care; Pediatric Palliative Screening Scale
It is estimated that 6.3 million children who die annually need pediatric palliative care (PPC) and that only about 10% of them receive the attention they need because about 98% of them live in under-resourced settings where PPC is not accessible. The consultative model and the integrated model of care (IMOC) are the most common strategies used to make PPC available to critically ill children. In the consultative model, the pediatric intensive care unit (PICU) team, the patient, or their family must request a palliative care (PC) consultation with the external PC team for a PICU patient to be evaluated for special care needs. While the consultation model has historically been more popular, issues related to specialist availability, referral timing, staff's personal biases, misconceptions about PC, and other factors may impede excellent candidates from receiving the attention they need in a timely manner. Contrastingly, in the IMOC, family-centered care, PC tasks, and/or PC are a standard part of the treatment automatically available to all patients. In the IMOC, the PICU team is trained to complete critical and PC tasks as a part of normal daily operations. This review investigates the claim that the IMOC is the best model to meet extensive PPC needs in PICUs, especially in low-resource settings; based on an extensive review of the literature, we have identified five reasons why this model may be superior. The IMOC appears to: (1) improve the delivery of PPC and pediatric critical care, (2) allow clinicians to better respond to the care needs of patients and the epidemiological realities of their settings in ways that are consistent with evidence-based recommendations, (3) facilitate the universal delivery of care to all patients with special care needs, (4) maximize available resources, and (5) build local capacity; each of these areas should be further researched to develop a model of care that enables clinicians to provide pediatric patients with the highest attainable standard of health care. The IMOC lays out a pathway to provide the world's sickest, most vulnerable children with access to PPC, a human right to which they are entitled by international legal conventions.
Grunauer M; Mikesell C
Frontiers in Pediatrics
2018
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<a href="http://doi.org/10.3389/fped.2018.00003" target="_blank" rel="noreferrer noopener">10.3389/fped.2018.00003</a>
A typology of fatigue in children with cancer
Child; Female; Humans; Male; Adult; British Columbia; Hospitals; Alberta; Pediatric; adolescent; Preschool; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Interviews; Fatigue/classification/complications/nursing/psychology; Neoplasms/complications/nursing
Fatigue in adults with cancer has received considerable attention as a troublesome symptom that requires nursing intervention. Fatigue in children with cancer, however, has received considerably less focus. The first phase of the present study used qualitative methods to generate a detailed description of fatigue in children with cancer. Thirteen children (ages 5 to 15) and 12 parents from the oncology service in two regional children's hospitals participated in the initial interviews; a validation sample comprised another 7 children and 6 parents from a third site. Transcribed interviews were subjected to grounded theory analysis. Energy, as an overriding phenomenon, was a core concept in the descriptions of fatigue. Findings suggest that children with cancer may experience three subjectively distinct types of fatigue that represent different levels of energy: typical tiredness, treatment fatigue, and shutdown fatigue. Children managed their dwindling energy and minimized further energy loss through strategies of replenishing, conserving, and preserving. Children's use of these strategies was influenced by temperament, lifestyle, environmental factors, and treatment modalities. Knowledge of the specific types of fatigue in children can offer direction for optimal intervention and for further research.
2002
Davies B; Whitsett SF; Bruce A; McCarthy P
Journal Of Pediatric Oncology Nursing
2002
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Journal Article
<a href="http://doi.org/10.1053/jpon.2002.30012" target="_blank" rel="noreferrer">10.1053/jpon.2002.30012</a>
Adaptation and Feasibility of the interRAI Family Carer Needs Assessment in a Pediatric Setting
child; Family caregivers; Informal caregivers; needs assessment; pediatric; self report; Surveys and questionnaires
Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family Carer Needs Assessment in carers of children, seeking to evaluate and improve its ability to capture their needs. This is a prospective pilot study of family carers of children with serious illness receiving care at a pediatric hospice. Thirty carers completed the self-assessment form. Additional feedback was sought inquiring about the appropriateness of questions and missing information relevant to the pediatric setting. All participants reported the assessment captured important information across multiple domains. Additional questions surrounding extra costs, home and school supports, as well as direct impacts of caregiving activities on pain and relationships were identified as important adaptations. The most common unmet needs in carers and care recipients were episodic relief from caregiving (n=17) and housing adaptation (n=17), respectively. Overall, a comprehensive assessment form is feasible in identifying the diverse needs of family carers of children. Future research should focus on using pediatric specific interRAI tools to guide improvements in policy and practice that can address unmet needs.
Stochitoiu IA; Vadeboncoeur C
Health Services Insights
2020
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<a href="http://doi.org/10.1177/1178632920972655" target="_blank" rel="noreferrer noopener">10.1177/1178632920972655</a>
Advance directives in a pediatric emergency department.
Child; Humans; Program Evaluation; Hospitals; Wisconsin; Emergency Service; Pediatric; DNAR; Resuscitation Orders; Hospital; Advance Directives; Emergency Medical Services
Parents of children with terminal illnesses are not always present when a life-threatening event occurs. For many of these children, an advance directive specifying alternate code orders has been written by the parent or legal guardian (hereafter the use of parent is to be interpreted as parent/legal guardian) and the patient's attending physician. Implementing a pediatric advanced directive presents significant problems for emergency personnel if the parent is not present to identify the existence of the directive and interpret the contents in the context of the current medical crisis.
1999
Walsh-Kelly CM; Lang KR; Chevako J; Blank EL; Korom N; Kirk K; Gray A
Pediatrics
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1542/peds.103.4.826" target="_blank" rel="noreferrer">10.1542/peds.103.4.826</a>
Advancing Pediatric Palliative Care in a Low-Middle Income Country: An Implementation Study, a Challenging but Not Impossible Task
Pediatric palliative care; Pediatric; Implementation; Latin America; Terminal care; Palliative medicine; authorship and/or publication of this article.; Program
BACKGROUND: The disparities in access to pediatric palliative care and pain management in Latin America remains an unaddressed global health issue. Efforts to improve the development of Palliative Care (PC) provision have traditionally targeted services for adults, leaving the pediatric population unaddressed. Examples of such services are scarce and should be portrayed in scientific literature to inform decision-makers and service providers on models of care available to tackle the burden of Pediatric Palliative Care (PPC) in Low-and middle-income countries (LMIC). The purpose of this study is to describe the implementation of a pediatric palliative care program, "Taking Care of You" (TCY), in a tertiary care, university hospital in Cali, Colombia. METHODS: A program's database was built with children between 0 to 18 years old and their families, from year 2017 to 2019. Descriptive analysis was carried out to evaluate the impact of the program and service delivery. A theory-based method was directed to describe the PPC program, according to the implementation of self-designed taxonomy, mapping theoretical levels and domains. Clinical outcomes in patients were included in the analysis. RESULTS: Since 2017 the program has provided PPC services to 1.965 children. Most of them had an oncologic diagnosis and were referred from hospitalization services (53%). The number of ambulatory patients increased by 80% every trimester between 2017 and 2018. A 50% increase was reported in hospitalization, emergency, and intensive care units during the same time period. CONCLUSIONS: The program addressed a gap in the provision of PPC to children in Cali. It shows effective strategies used to implement a PPC program and how the referral times, coordination of care, communication with other hospital services were improved while providing compassionate/holistic care to children with life-limiting and threatening diseases and in end-of-life. The implementation of this program has required the onset of specific strategies and arrangements to promote awareness and education proving it a hard task, yet not impossible.
Garcia-Quintero X; Parra-Lara LG; Claros-Hulbert A; Cuervo-Suarez MI; Gomez-Garcia W; Desbrandes F; Arias-Casais N
BMC Palliative Care
2020
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<a href="http://doi.org/10.1186/s12904-020-00674-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00674-2</a>
Alterations in end-of-life support in the pediatric intensive care unit.
Child; Humans; Advance Directives; Withholding Treatment; Life Support Care; Resuscitation Orders; Brain Death; Pediatric; DNAR; Intensive Care Units; Terminal Care
OBJECTIVE: Our purpose was to examine alterations in end-of-life support in a multiinstitutional sample of PICUs., METHODS: This was a retrospective, descriptive study. Variables collected included end-of-life support category, race, length of stay, operative status, reason for admission, and Pediatric Index of Mortality 2 score, as well as the number of ICU beds and the presence of trainees., RESULTS: There were 1745 deaths at 35 institutions between January 1, 2004, and September 30, 2005. Of those, 1263 had complete data and were analyzed. The end-of-life support category distribution was as follows: brain death, 296 (23%); do not resuscitate, 205 (16%); limitation of support, 36 (3%); withdrawal of support, 579 (46%); no limitation, 124 (10%); no advance directives, 23 (2%). For further analyses, end-of-life support categories were grouped as limitation (ie, do not resuscitate, limitation of support, or withdrawal of support) versus no limitation (ie, no limitation or no advance directive). Brain death was not included in further analyses. The majority of deaths were in the limitation group (n=820 [85%]), and 12 (40%) of 30 institutions had 100% of deaths in this group. There were significant differences between institutions (P<.001). Decisions for limitation were seen less frequently in the black race (112 [76%] of 147 deaths; P=.037) and in institutions with no trainees (56 [69%] of 81 deaths; P<.001)., CONCLUSIONS: Decisions to limit support are common. Black race and an absence of trainees are associated with decreased frequency of limitation decisions.
2010
Lee KJ; Tieves K; Scanlon MC
Pediatrics
2010
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Journal Article
<a href="http://doi.org/10.1542/peds.2010-0420" target="_blank" rel="noreferrer">10.1542/peds.2010-0420</a>
An Interdisciplinary Hospital-Based Committee to Improve Pediatric Bereavement Care
Bereavement; Hospital care; Interdisciplinary; Pediatric
Although frequently overshadowed by adult mortality rates and bereavement care needs, the death of a child can significantly jeopardize the physical, psychosocial, and emotional health of surviving parents, caregivers, and family members. Unfortunately, researchers have only recently begun to explore the trajectory of pediatric bereavement care needs. As an ongoing public health concern, health care institutions and related organizations must partner with interdisciplinary care providers and bereaved families to design effective and sustainable bereavement supports in their communities. Therefore, the purpose of this article is to describe the development and accomplishments of an interdisciplinary bereavement committee at a children's hospital within an academic medical center. By relying on available empirical evidence and close collaboration with bereaved parent members, this effort has generated sizeable practice improvements and new service offerings within the organization, local community, and the individual patients and families the institution serves. Copyright © 2021 by the American Academy of Pediatrics.
Goldberg JM; Duplechain AC; Fraser CE; Boles JC
Hospital Pediatrics
2021
<a href="http://doi.org/10.1542/hpeds.2021-005964" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2021-005964</a>
An Overview of Ethical Issues Raised by Medicolegal Challenges to Death by Neurologic Criteria in the United Kingdom and a Comparison to Management of These Challenges in the USA
Brain injury; end-of-life issues; Great Britain; law; neurology; Pediatric; religion
Although medicolegal challenges to the use of neurologic criteria to declare death in the USA have been well-described, the management of court cases in the United Kingdom about objections to the use of neurologic criteria to declare death has not been explored in the bioethics or medical literature. This article (1) reviews conceptual, medical and legal differences between death by neurologic criteria (DNC) in the United Kingdom and the rest of the world to contextualize medicolegal challenges to DNC; (2) summarizes highly publicized legal cases related to DNC in the United Kingdom, including the nuanced 2022 case of Archie Battersbee, who was transiently considered dead by neurologic criteria, but ultimately determined to be in a vegetative state/unresponsive-wakeful state; and (3) provides an overview of ethical issues raised by medicolegal challenges to DNC in the United Kingdom and a comparison to the management of these challenges in the USA.
Lewis A
American Journal of Bioethics
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/10.1080/15265161.2022.2160516" target="_blank" rel="noreferrer noopener">10.1080/15265161.2022.2160516</a>
Applying Palliative Care Principles to Communicate With Children About COVID-19
children; communication; coronavirus; COVID-19; pediatric; pediatric palliative
Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children and grandchildren about the coronavirus. Palliative care teams are wise to encourage families to ground their communication with children on key values: honesty and trust, self-compassion, safety, sensitivity, connection, preparedness, community building, recognition of death as a part of the life cycle, and legacy. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Weaver M S; Wiener L
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2020.03.020" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.03.020</a>
Assessment of the Implementation of Pharmacogenomic Testing in a Pediatric Tertiary Care Setting
pediatric; children with medical complexity; pharmacogenomic testing; pharmacogenes
Pharmacogenomic (PGx) testing provides preemptive pharmacotherapeutic guidance regarding the lack of therapeutic benefit or adverse drug reactions of PGx targeted drugs. Pharmacogenomic information is of particular value among children with complex medical conditions who receive multiple medications and are at higher risk of developing adverse drug reactions.To assess the implementation outcomes of a PGx testing program comprising both a point-of-care model that examined targeted drugs and a preemptive model informed by whole-genome sequencing that evaluated a broad range of drugs for potential therapy among children in a pediatric tertiary care setting.This cohort study was conducted at The Hospital for Sick Children in Toronto, Ontario, from January 2017 to September 2020. Pharmacogenomic analyses were performed among 172 children who were categorized into 2 groups: a point-of-care cohort and a preemptive cohort. The point-of-care cohort comprised 57 patients referred to the consultation clinic for planned therapy with PGx targeted drugs and/or for adverse drug reactions, including lack of therapeutic benefit, after the receipt of current or past medications. The preemptive cohort comprised 115 patients who received exploratory whole-genome sequencing–guided PGx testing for their heart conditions from the cardiac genome clinic at the Ted Rogers Centre for Heart Research.Patients received PGx analysis of whole-genome sequencing data and/or multiplex genotyping of 6 pharmacogenes (CYP2C19, CYP2C9, CYP2D6, CYP3A5, VKORC1, and TPMT) that have established PGx clinical guidelines.The number of patients for whom PGx test results warranted deviation from standard dosing regimens.A total of 172 children (mean [SD] age, 8.5 [5.6] years; 108 boys [62.8%]) were enrolled in the study. In the point-of-care cohort, a median of 2 target genes (range, 1-5 genes) were investigated per individual, with CYP2C19 being the most frequently examined; genotypes in 21 of 57 children (36.8%) were incompatible with standard treatment regimens. As expected from population allelic frequencies, among the 115 children in the whole-genome sequencing–guided preemptive cohort, 92 children (80.0%) were recommended to receive nonstandard treatment regimens for potential drug therapies based on their 6-gene pharmacogenetic profile.In this cohort study, among both the point-of-care and preemptive cohorts, the multiplex PGx testing program provided dosing recommendations that deviated from standard regimens at an overall rate that was similar to the population frequencies of relevant variants.
Cohn I; Manshaei R; Liston E; Okello JBA; Khan R; Curtis MR; Krupski AJ; Jobling RK; Kalbfleisch K; Paton TA; Reuter MS; Hayeems RZ; Verstegen RHJ; Goldman A; Kim RH; Ito S
JAMA Network Open
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/10.1001/jamanetworkopen.2021.10446" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.10446</a>
At the boundaries of life: Suffering and decision-making in children with life-threatening conditions (1-12 years)
communication; end-of-life decision making; life-threatening condition; pediatric; Suffering
Dying –or the possibility of death— is not a topic often addressed in modern medicine, especially in paediatrics. But when parents and children are faced with a life-threatening condition, difficult decisions may arise. How do parents and physicians navigate the field between care and end-of-life decisions? Knowledge about care and end-of-life decisions in children is very limited, especially for children between 1 and 12 years. In this thesis, various aspects of care, communication, suffering and decision-making for children (1-12y) with life-threatening conditions are explored. The need for knowledge was emphasized by developments in paediatric euthanasia. In 2014, the Belgian parliament amended their laws on euthanasia to include competent minors. This amendment sparked a debate in the Netherlands on paediatric euthanasia. In our study we found that some parents and physicians had witnessed unbearable suffering in children, and expressed a need for expanding regulations on active ending of life. In 2019, we reported our findings to the Dutch minister. Recently, the Minister announced to expand regulations on active life-ending to include children between the age of 1 and 12 in rare cases of unbearable suffering. However, active life-ending is merely a part of a larger context of care and decision-making. Parents and physicians express a need for clarity and guidance in all aspects of care and decision-making around the end of life. Care and decision-making can, and should be further developed to suit the needs of children with life-threatening conditions, in all stages of their illness.
Brouwer M
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/10.33612/diss.159020586" target="_blank" rel="noreferrer noopener">10.33612/diss.159020586</a>
Attitudes toward limitation of support in a pediatric intensive care unit
Child; Female; Humans; Male; Intensive Care Units; Medical Futility; Prospective Studies; Euthanasia; Ethics; Medical; quality of life; Pediatric; patient care team; Caregivers/psychology; ICU Decision Making; Resuscitation Orders/psychology; Passive/psychology; Life Support Care/psychology
OBJECTIVE: To prospectively determine opinions of members of a pediatric intensive care unit (PICU) team regarding the appropriateness of aggressive care. The types of support that caregivers sought to limit and their reasons for wanting these limits were collected over time. DESIGN: Prospective survey of caregiver opinions. SETTING: PICU in an academic tertiary care children's hospital. SUBJECTS: A total of 68 intensive care nurses, 11 physicians attending in the PICU, 10 critical care and anesthesia fellows, and 24 anesthesia and pediatric residents. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: During a 6-month period, 503 patients were admitted to the PICU. Within this time period, 52.4% of all deaths were preceded by limitation of support, with 100% of noncardiac surgical deaths preceded by limitation of medical interventions. At least one caregiver wished to limit care for 63 of these patients (12.5%). When caregivers wished to limit support they most frequently wished to limit invasive modes of support such as cardiopulmonary resuscitation (94%) and hemodialysis (83%). The ethical rationales identified most often for wishing to limit support were burden vs. benefit (88%) and qualitative futility (83%). Preadmission quality of life was cited less frequently (50%). Caregivers were less likely to limit care on the basis of quality of life. Nurses and physicians in the PICU were very similar to each other in the types of support they thought should be limited and their ethical rationales. CONCLUSIONS: When making decisions about whether or not to limit care for a patient, caregivers were more likely to rely on the perceived benefit to the patient than preadmission quality of life.
2000
Keenan HT; Diekema DS; O'Rourke PP; Cummings P; Woodrum DE
Critical Care Medicine
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/00003246-200005000-00055" target="_blank" rel="noreferrer">10.1097/00003246-200005000-00055</a>
Barriers to conducting advance care discussions for children with life-threatening conditions.
Child; Female; Humans; Male; United States; Adult; Medical Staff; Questionnaires; Hospitals; Practice; Pediatric; Attitudes; DNAR; DNAR Outcomes; Palliative Care/st [Standards]; Advance Care Planning/og [Organization & Administration]; Critical Illness/th [Therapy]; Attitude of Health Personnel; Communication Barriers; Health Knowledge; Medical Staff; Hospital/es [Ethics]; Hospital/px [Psychology]; Hospital/st [Standards]
BACKGROUND AND OBJECTIVE: Advance care discussions (ACD) occur infrequently or are initiated late in the course of illness. Although data exist regarding barriers to ACD among the care of adult patients, few pediatric data exist. The goal of this study was to identify barriers to conducting ACD for children with life-threatening conditions., METHODS: Physicians and nurses from practice settings where advance care planning typically takes place were surveyed to collect data regarding their attitudes and behaviors regarding ACD., RESULTS: A total of 266 providers responded to the survey: 107 physicians and 159 nurses (54% response rate). The top 3 barriers were: unrealistic parent expectations, differences between clinician and patient/parent understanding of prognosis, and lack of parent readiness to have the discussion. Nurses identified lack of importance to clinicians (P = .006) and ethical considerations (P < .001) as impediments more often than physicians. Conversely, physicians believed that not knowing the right thing to say (P = .006) was more often a barrier. There are also perceived differences among specialties. Cardiac ICU providers were more likely to report unrealistic clinician expectations (P < .001) and differences between clinician and patient/parent understanding of prognosis (P = .014) as common barriers to conducting ACD. Finally, 71% of all clinicians believed that ACD happen too late in the patient's clinical course., CONCLUSIONS: Clinicians perceive parent prognostic understanding and attitudes as the most common barriers to conducting ACD. Educational interventions aimed at improving clinician knowledge, attitudes, and skills in addressing these barriers may help health care providers overcome perceived barriers.
Durall A; Zurakowski D; Wolfe J
Pediatrics
2012
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1542/peds.2011-2695" target="_blank" rel="noreferrer">10.1542/peds.2011-2695</a>
Becoming a Team: The Nature of the Parent-Healthcare Provider Relationship when a Child is Dying in the Pediatric Intensive Care Unit
Child death; Parent; intensive care; Bereavement; Child; Intensive Care; Intensive Care Units; Only Child; Pediatric; Pediatric intensive care unit; Grounded theory; child; Nurse; Relationship
PURPOSE: To explore bereaved parents' perspectives of parent and staff roles in the pediatric intensive care unit when their child was dying, and their relationships with healthcare staff during this time. DESIGN AND METHODS: Constructivist grounded theory was used to undertake this study. Semi-structured interviewers were conducted with 26 bereaved parents recruited from four Australian pediatric intensive care units. The constant comparative method, coupled with open, focused, and theoretical coding were used for data analysis. RESULTS: Becoming a team explores the changes that occurred to the parent-healthcare provider relationship when parents realized their child was dying and attempted to become part of their child's care team. When the focus of care changed from 'life-saving' to 'end-of-life', parents' perspectives and desires of their and the healthcare providers' roles changed. Parents' attempted to reconstruct their roles to match their changing perspectives, which may or may not have been successful, depending on their ability to successfully negotiate these roles with healthcare providers. CONCLUSIONS: Findings offer insights into parental understandings of both the parental and healthcare provider roles for parents of dying children in intensive care, and the ways in which the parent-healthcare provider relationships can influence and be influenced by changes to these roles. PRACTICE IMPLICATIONS: Successful parent-healthcare provider relationships require an understanding of the parental and healthcare provider role from the parents' perspective. The meanings of the parental and healthcare provider roles should be explored with parents of dying children, and supported as much as possible to enable the development of a collaborative relationship.
Butler AE; Hall H; Copnell B
Journal of Pediatric Nursing
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/10.1016/j.pedn.2018.02.002" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2018.02.002</a>
Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease
Palliative Care; Decision Making; Intensive Care Units; Referral and Consultation; Mutation; Child; Male; Pain Management; Intellectual Disability; Health Education; Parental Attitudes; Pediatric; Pediatric Care; Connective Tissue Diseases Diagnosis; Connective Tissue Diseases Familial and Genetic In Infancy and Childhood; Connective Tissue Diseases Symptoms; Connective Tissue Diseases Therapy In Infancy and Childhood; Dyspnea Drug Therapy; Face Pathology; Family Education; Fibrosis; Morphine Therapeutic Use; Clinical; Muscle; Skeletal Abnormalities
The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program Care4Rare at the Children's Hospital of Eastern Ontario, the importance of finding a name or a genetic difference or a cause for future family planning, and the role of morphine for symptom management.
Vadeboncoeur C; McHardy M
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).
<a href="http://doi.org/10.1542/peds.2017-3417" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-3417</a>
Bereavement support for families following the death of a child from cancer: experience of bereaved parents
Child; Humans; Intensive Care Units; bereavement; Death; Neoplasms; Parents; Siblings; Professional-Family Relations; Death; social support; Pediatric; bereavement; Parents/psychology; Neoplasms; social support; sibling bereavement; Hospital; SSHRC CURA; Personnel; Siblings/psychology
This study explored the experiences and needs of nine parents who had received hospital-based bereavement support following the death of their child from cancer, in Western Australia. Six prominent themes emerged from thematic data analysis: personal grief, personal coping, concern for siblings of the deceased child, hospital bereavement support, community supports and unmet needs. Parents identified the need for more supportive contact from hospital staff during the palliative phase and following the child's death, early provision of information on how to practically and emotionally prepare for the death of their child, contact with other bereaved parents, and formal grief support for siblings. Areas for future research include exploration of parents' wish to become involved in activities to help others, bereavement support for siblings, the level of contact with the hospital unit that may be therapeutically beneficial, and parental behaviors associated with accessing both hospital and community-based bereavement supports.
2006
deCinque N; Monterosso L; Dadd G; Sidhu R; Macpherson R; Aoun S
Journal Of Psychosocial Oncology
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/10.1300/J077v24n02_05" target="_blank" rel="noreferrer">10.1300/J077v24n02_05</a>
Buprenorphine for chronic pain in a pediatric patient with sickle-cell disease
pediatric; palliative care; pain; buprenorphine; sickle-cell disease
Sickle-cell disease (SCD) is an inherited hematologic disorder characterized by the presence of sickle-shaped red blood cells (RBC). 1 Misshapen RBCs are rigid, which leads to occlusion of blood vessels resulting in tissue ischemia and pain. Pain can manifest as acute, intermittent episodes (vaso-occlusive crises [VOC]), chronic pain, or acute-on-chronic pain. 1 Buprenorphine is a semisynthetic opioid that has historically been used for opioid use disorder. Due to a unique receptor binding profile and favorable safety profile, including lower risk of tolerance and hyperalgesia, buprenorphine is increasingly recognized for its utility in chronic pain management, especially in complex cases. 2 ,3 Two small studies reported decreased healthcare utilization and daily opioid requirements in adults with chronic SCD pain transitioned from full opioid agonists to buprenorphine. 4 ,5 Another case series of two adolescents with chronic SCD pain described rotation to buprenorphine with improved functionality and decreased opioid requirements. 6 Literature on buprenorphine for pain in pediatric patients is sparse in general and practically nonexistent for pediatric chronic SCD pain. 7 Here, we report buprenorphine induction for chronic pain in a pediatric patient with SCD.
Irwin M; Gunther W; Keefer P; Saul D; Singh S; Wright J; Smith M
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2021.04.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.04.007</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
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
Cannabis Use in Children With Pantothenate Kinase-Associated Neurodegeneration
children; developmental disability; dystonia; pediatric; treatment
BACKGROUND: Pantothenate kinase-associated neurodegeneration is characterized by severe, progressive dystonia. This study aims to describe the reported usage of cannabis products among children with pantothenate kinase-associated neurodegeneration. METHODS: A cross-sectional, 37-item survey was distributed in April 2019 to the families of 44 children who participate in a clinical registry of individuals with pantothenate kinase-associated neurodegeneration. RESULTS: We received 18 responses (40.9% response rate). Children were a mean of 11.0 (SD 4.3) years old. The 15 respondents with dystonia or spasticity were on a median of 2 tone medications (range 0-9). Seven children had ever used cannabis (38.9%). The most common source of information about cannabis was other parents. Children who had ever used cannabis were on more tone medications, were more likely to have used opiates, were less likely to be able to roll, and less likely to sit comfortably, than children who had never used cannabis. Four children reported moderate or significant improvement in dystonia with cannabis. Other areas reported to be moderate or significantly improved were pain (n = 3), sleep (n = 4), anxiety (n = 3), and behavior (n = 2). Adverse effects included sadness (n = 1), agitation/behavior change (n = 1), and tiredness (n = 1). CONCLUSION: Cannabis use was commonly reported among children with pantothenate kinase-associated neurodegeneration whose parents responded to a survey, particularly when many other dystonia treatments had been tried. Physicians should be aware that parents may treat their child with severe, painful dystonia with cannabis. Placebo-controlled studies of products containing cannabidiol and 9-tetrahydrocannabinol are needed for pediatric tone disorders.
Wilson J L; Gregory A; Wakeman K; Freed A; Rai P; Roberts C; Hayflick S J; Hogarth P
Journal of Child Neurology
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/10.1177/0883073819890516" target="_blank" rel="noreferrer noopener">10.1177/0883073819890516</a>
Caring for children living with life-threatening illness: a growing relationship between pediatric hospital medicine and pediatric palliative care
Child; Humans; Palliative Care; Pediatrics; Critical Illness; Hospitals; Pediatric; Hospital Medicine
2014-08
Ullrich CK; Wolfe J
Pediatric Clinics Of North America
2014
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Journal Article
<a href="http://doi.org/10.1016/j.pcl.2014.05.004" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.05.004</a>
Cause of Death in Children With Mitochondrial Diseases
Age of Onset; cause of death; Child; Children; Female; Follow-Up Studies; Humans; Male; mitochondrial disease; Mitochondrial Diseases; Mitochondrial Diseases/ mortality; mortality; Only Child; Pediatric; Preschool; risk factor
BACKGROUND: We investigated the clinical characteristics that represent risk factors for death in pediatric patients with mitochondrial diseases. METHODS: The medical records of mitochondrial disease pediatric patients attended between 2006 and 2015 (n = 221) were reviewed for clinical characteristics, diagnosis, hospitalization, follow-up, survival, and cause of death. RESULTS: The global mortality rate in the cohort was 14% (average age at death, six years). By syndromic diagnosis, the mortality rates were as follows: Leigh syndrome, 17% (15 of 88); mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes, 50% (two of four); and nonspecific mitochondrial disease, 11% (14 of 129). Data regarding 31 patients (17 males) were included in the analysis of cause of death. The age at symptom onset, lead time to diagnosis, duration of illness, and duration of life were 1.8 +/- 2.0, 1.7 +/- 1.5, 4.3 +/- 2.7, and 6.1 +/- 2.9 years, respectively. The most common causes of death were sepsis, pneumonia, disseminated intravascular coagulation, and sudden unexpected death (55%, 42%, 29%, and 29%, respectively). Early death (age six years or younger) was associated with lesions in the thalamus, number of organs involved, and Leigh syndrome. CONCLUSIONS: Careful monitoring of the medical condition and early intervention are key to improving survival in pediatric patients with mitochondrial disease.
Eom S; Lee HN; Lee S; Kang HC; Lee JS; Kim HD; Lee YM
Pediatric Neurology
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.pediatrneurol.2016.10.006" target="_blank" rel="noreferrer">10.1016/j.pediatrneurol.2016.10.006</a>
Certainty and mortality prediction in critically ill children.
Child; Humans; Intensive Care Units; Medical Staff; Hospital Mortality; Prognosis; Prospective Studies; Clinical Competence; Longitudinal Studies; Risk Assessment; Pediatric; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; Hospital; Health Care and Public Health; Critical Illness/mortality
OBJECTIVES: The objective of this study is to investigate the relationship between a physician's subjective mortality prediction and the level of confidence with which that mortality prediction is made. DESIGN AND PARTICIPANTS: The study is a prospective cohort of patients less than 18 years of age admitted to a tertiary Paediatric Intensive Care Unit (ICU) at a University Children's Hospital with a minimum length of ICU stay of 10 h. Paediatric ICU attending physicians and fellows provided mortality risk predictions and the level of confidence associated with these predictions on consecutive patients at the time of multidisciplinary rounds within 24 hours of admission to the paediatric ICU. Median confidence levels were compared across different ranges of mortality risk predictions. RESULTS: Data were collected on 642 of 713 eligible patients (36 deaths, 5.6%). Mortality predictions greater than 5% and less than 95% were made with significantly less confidence than those predictions 95%. Experience was associated with greater confidence in prognostication. CONCLUSIONS: We conclude that a physician's subjective mortality prediction may be dependent on the level of confidence in the prognosis; that is, a physician less confident in his or her prognosis is more likely to state an intermediate survival prediction. Measuring the level of confidence associated with mortality risk predictions (or any prognostic assessment) may therefore be important because different levels of confidence may translate into differences in a physician's therapeutic plans and their assessment of the patient's future.
2004
Marcin JP; Pretzlaff RK; Pollack MM; Patel KM; Ruttimann UE
Journal Of Medical Ethics
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/10.1136/jme.2002.001537" target="_blank" rel="noreferrer">10.1136/jme.2002.001537</a>
Challenges and Priorities for Pediatric Palliative Care Research in the United States and Similar Practice Settings: Report from a Pediatric Palliative Care Research Network Workshop
palliative care; decision-making; funding; pediatric; family; infrastructure; methodology; research; symptoms; training
CONTEXT: In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship. OBJECTIVES: The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities. METHODS: The workshop focused on PPC research topics and methods, including: outcomes measurement, qualitative inquiry, analyses of "big data," prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report. RESULTS: Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research upon participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision-making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education. CONCLUSION: These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.
Feudtner C; Rosenberg A R; Boss R D; Wiener L; Lyon M E; Hinds P S; Bluebond-Langner M; Wolfe J
Journal of Pain and Symptom Management
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.jpainsymman.2019.08.011" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.011</a>
Characteristics of family conferences at the bedside versus the conference room in pediatric critical care
Child; Female; Humans; Male; Intensive Care Units; patient care team; decision making; Cohort Studies; Health Care Surveys; Parents; Attitude of Health Personnel; Questionnaires; Prospective Studies; Professional-Family Relations; Physicians; Patient Participation; Intensive Care; Pediatric
OBJECTIVE: To compare characteristics of family conferences at the bedside vs. the conference room in the PICU. DESIGN: Single-site, cohort survey study. SETTING: Thirty-three bed academic PICU in an urban setting. PARTICIPANTS: Ten PICU physicians (90.9%) providing care to 29 patients whose families participated in 58 family conferences. MEASUREMENTS AND MAIN RESULTS: Family conferences, defined as a meeting involving the parent(s) of a PICU patient and the critical care attending physician to discuss a treatment decision, redirection of care from curative to palliative, or deliver bad news, occurred most commonly among families of the sickest patients. Conferences were conducted at the bedside 20 times out of 58 (33%). Although physicians stated a general preference to discuss withdrawal or withholding care in the conference room, there was no difference in location during actual conferences. Physicians preferred the bedside when they wanted the patient to participate (p = 0.01) or because it was perceived to be easier (p < 0.0005) or faster (p = 0.016) to conduct, while the conference room was preferred when additional space was needed (p < 0.0005). Family conferences at the bedside were less likely to include a social worker (p < 0.0005), consultant physicians (p = 0.043), or father of the patient (p = 0.006) as compared with conferences in a conference room. Family conferences convened to discuss a treatment were followed by a decision within 24 hours (42% of the time) and a change in code status (32% of the time). In 32 of 58 family conferences (55%), the attending physician did not have a prior relationship with the family. CONCLUSION: Family conferences in the PICU are common both at the bedside and in conference rooms in a subpopulation of the most critically ill children and frequently result in a treatment decision or change in code status.
2013-03
October TW; Watson Anne C; Hinds PS
Pediatric Critical Care Medicine
2013
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/PCC.0b013e318272048d" target="_blank" rel="noreferrer">10.1097/PCC.0b013e318272048d</a>
Child-rearing in the context of childhood cancer: Perspectives of parents and professionals
psychosocial; Pediatric; cancer; parenting; childhood; Child Rearing
Background Elevated distress has been well documented among parents of children with cancer. Family systems theories suggest that cancer-related stressors and parental distress have the potential to affect child-rearing practices, but this topic has received limited empirical attention. The present work examined self-reported child-rearing practices among mothers and fathers of children with cancer and matched comparisons. Procedure Medical and psychosocial professionals with expertise in pediatric oncology selected items from the Child-Rearing Practices Report (CRPR) likely to differentiate parents of children with cancer from matched comparison parents. Then, responses on these targeted items were compared between parents of children with cancer (94 mothers, 67 fathers) and matched comparisons (98 mothers, 75 fathers). Effect sizes of between-group differences were compared for mothers versus fathers. Results Pediatric oncology healthcare providers predicted that 14 items would differentiate child-rearing practices of parents of children with cancer from parents of typically developing children. Differences emerged on six of the 14 CRPR items. Parents of children with cancer reported higher levels of spoiling and concern about their child's health and development than comparison parents. Items assessing overprotection and emotional responsiveness did not distinguish the two groups of parents. The effect size for the group difference between mothers in the cancer versus comparison groups was significantly greater than that for fathers on one item related to worry about the child's health. Conclusion Parents of children with cancer report differences in some, but not all, domains of child-rearing, as predicted by healthcare professionals. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013
Long KA; Keeley L; Reiter-Purtill J; Vannatta K; Gerhardt CA; Noll RB
Pediatric Blood & Cancer
2013
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/10.1002/pbc.24556" target="_blank" rel="noreferrer">10.1002/pbc.24556</a>
Choiceless options: when hospital-based services represent the only palliative care offering
availability; palliative care; pediatric; rural
Lack of availability of community-based pediatric palliative care and home-based hospice services for children limits care location options for families. For many families from rural regions, hospital-based care models may be perceived as the only viable choice due to geographic gaps in service coverage. Gaps exist not only in access to these key services but also in service quality without national pediatric service standards. While families from rural regions may express a goal to be home with their child for relational and communal care purposes the current setting of services may limit the feasibility of home-based care. Several potential pediatric systems changes (workforce, finance, policy) have the capacity to create and sustain a care model that allows a child with complex, chronic, or life-limiting diagnoses to experience a home other than the hospital. The existence of community-based pediatric palliative and pediatric home-based hospice services with a sustained workforce and high-quality national standard for children would bolster the ultimate congruence of a family's preference with actual care choices. IMPACT: Families of children with life-limiting diagnoses may express a preference to be home together. Disparities in access to community-based pediatric palliative care and hospice exist for children, particularly in rural regions. These gaps may translate into families experiencing hospital-based settings as the only feasible care model which may result in care escalations and medicalization. Expansion of the community-based workforce and development of pediatric-specific standards for key palliative services would increase home-based care options for families. This paper acknowledges the pediatric palliative and hospice availability crisis in rural regions and urges for improved access to high-quality, community-based services for children.
Weaver MS; Lindley LC
Pediatric Research
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/10.1038/s41390-021-01909-5" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01909-5</a>
Circumstances surrounding end of life in a pediatric intensive care unit
Child; Female; Humans; infant; Male; Intensive Care Units; Adult; Parent-Child Relations; Withholding Treatment; Attitude to Death; Resuscitation Orders; Ontario; Analgesia; Treatment Failure; Pediatric; adolescent; Preschool; patient care team; decision making; infant; Newborn; ICU Decision Making; cause of death; Parents/psychology; Physicians/psychology; Terminal Care/psychology
OBJECTIVE: Approximately 60% of deaths in pediatric intensive care units follow limitation or withdrawal of life-sustaining treatment (LST). We aimed to describe the circumstances surrounding decision making and end-of-life care in this setting. METHODS: We conducted a prospective, descriptive study based on a survey with the intensivist after every consecutive death during an 8-month period in a single multidisciplinary pediatric intensive care unit. Summary statistics are presented as percentage, mean +/- standard deviation, or median and range; data are compared using the Mantel-Haenszel test and shown as survival curves. RESULTS: Of the 99 observed deaths, 27 involved failed cardiopulmonary resuscitation; of the remaining 72, 39 followed withdrawal/limitation (W/LT) of LST, 20 were do not resuscitate (DNR), and 13 were brain deaths (BDs). Families initiated discussions about forgoing LST in 24% (17 of 72) of cases. Consensus between caregivers and staff about forgoing LST as the best approach was reached after the first meeting with 51% (35 of 68) of families; 46% (31 of 68) required >or=2 meetings (4 not reported). In the DNR group, the median time to death after consensus was 24 hours and for W/LT was 3 hours. LST was later withdrawn in 11 of 20 DNR cases. The family was present in 76% (45 of 59) of cases when LST was forgone. The dying patient was held by the family in 78% (35 of 45) of these occasions. CONCLUSIONS: More than 1 formal meeting was required to reach consensus with families about forgoing LST in almost half of the patients. Families often held their child at the time of death. The majority of children died quickly after the end-of-life decision was made.
2003
Garros D; Rosychuk RJ; Cox PN
Pediatrics
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/10.1542/peds.112.5.e371" target="_blank" rel="noreferrer">10.1542/peds.112.5.e371</a>
Clinical Care Strategies That Support Parents of Children With Complex Chronic Conditions
chronic care; communication; complex chronic conditions; critical care; parental perspectives; pediatric
OBJECTIVES: Children with complex chronic conditions often receive inpatient and end-of-life care in the ICU, yet little is known about the clinical care strategies that best support this unique group of parents. This study aimed to elucidate supportive clinical care strategies identified by bereaved parents of children with complex chronic conditions. DESIGN: Qualitative analysis of 21 open-response items from the cross-sectional "Survey of Caring for Children with Complex Chronic Conditions" querying communication, decision-making, and end-of-life experiences. SETTING: Large tertiary care children's hospital. PATIENTS: Parents of children with complex chronic conditions who received care at a large academic institution and died between 2006 and 2015. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: An iterative multistage thematic analysis of responses was used to identify key themes pertaining to clinical care strategies that support parents of children with complex chronic conditions. Open-ended responses were analyzed from 110 of 114 (96%) of survey respondents. The majority of parents had children with congenital/chromosomal complex chronic conditions who died 3.9 years (interquartile range, 2.2-6.7 yr) prior to their parents' study participation. Although informational themes related to clear honest communication, consistent messaging, and enhanced care coordination were identified, parents emphasized the relational aspects of clinical care including inclusivity of their expertise about their child's needs, recognition of their unique experience as parents, and maintenance of connection with clinicians through bereavement. CONCLUSIONS: Clinical care strategies that support parents of children with complex chronic conditions reflect the unique needs of this group of children. Relational strategies such as including parents as experts in their child's care were paramount to parents of children with complex chronic conditions throughout their child's medical journey and at end of life.
Bogetz JF; Revette A; DeCourcey DD
Pediatric Critical Care Medicine
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/pcc.0000000000002726" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002726</a>
Clinical Characteristics of the End-of-Life Phase in Children with Life-Limiting Diseases: Retrospective Study from a Single Center for Pediatric Palliative Care
children; pediatric; palliative care; end-of-life; symptom management
BACKGROUND: Data on the end-of-life phase of children receiving palliative care are limited. The purpose of this study is to investigate the spectrum of symptoms of terminally ill children, adolescents, and young adults, depending on their underlying disease. METHODS: Findings are based on a 4.5-year retrospective study of 89 children who received palliative care before they died, investigating the symptomatology of the last two weeks before death. RESULTS: In this study, the most common clinical symptomatology present in children undergoing end-of-life care includes pain, shortness of breath, anxiety, nausea, and constipation. Out of 89 patients included in this study, 47% suffered from an oncological disease. Oncological patients had a significantly higher symptom burden at the end of life (p < 0.05) compared to other groups, and the intensity of symptoms increased as the underlying disease progressed. The likelihood of experiencing pain and nausea/vomiting was also significantly higher in oncological patients (p = 0.016). CONCLUSIONS: We found that the underlying disease is associated with marked differences in the respective leading clinical symptom. Therefore, related to these differences, symptom management has to be adjusted according to the underlying disease, since the underlying disorder seems to exert an influence on the severity of symptoms and thereby on the modality and choice of treatment. This study is intended to aid underlying disease-specific symptom management at the end-of-life care for children, adolescents, and young adults, with a specific focus on end-of-life care in a home environment.
Baumann F; Hebert S; Rascher W; Woelfle J; Gravou-Apostolatou C
Children
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/10.3390/children8060523" target="_blank" rel="noreferrer noopener">10.3390/children8060523</a>
Clinician end-of-life experiences with pediatric Muslim patients at a US quaternary care center
clinician experience; culturally-appropriate care; diversity; Muslim patients; pediatric
CONTEXT: A small, growing body of data exist discussing the experiences of Muslim patients with the palliative care system, both in the United States and abroad, as well as providers' experiences with Muslim patients. However, no studies evaluate clinician experiences with Muslim patients in the United States, and none address the unique dynamics of pediatric clinician experiences with Muslim patients and their families in the EOL setting. OBJECTIVES: The purpose of this study is to perform a thematic analysis of clinician experiences with pediatric Muslim patients and families at the end of life. METHODS: This was a qualitative study of pediatric clinicians at Duke University Medical Center in the Pediatric Intensive Care Unit, Pediatric Cardiac Intensive Care Unit, and Pediatric Bone Marrow Unit from August 2018 to February 2019. We conducted semi-structured interviews with nurses, attending physicians, and social workers to assess participants' experiences caring for Muslim patients and families. We analyzed interview transcripts using descriptive content analysis with NVivo10. RESULTS: We interviewed 16 clinicians at Duke University Medical Center Pediatric Intensive Care Unit, Pediatric Cardiac Intensive Care Unit, and Pediatric Bone Marrow Unit. Five physicians, 5 social workers, and 6 nurses were interviewed. The majority of providers were female, Caucasian, and Christian in an institution where Muslim patients are a significant minority. Several themes emerged highlighting language barriers, difficulty engaging with Muslim families, variations in approach to care and communication, discomfort with gender roles, moral distress with unrelatable decision-making, and external pressures on patient decision-making. CONCLUSIONS: A thematic analysis of pediatric clinicians at a quaternary care center in the Southern United States yielded several prominent themes. Many clinicians recognize they likely provide disparate care to minority patients for a variety of reasons encompassing the above barriers. As we work to care for an increasingly diverse patient population, more research into barriers to care and effective educational methods is needed.
Kolmar A; Kamal AH; Steinhauser KE
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2022.01.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.01.005</a>