End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium
Brussels Capital Region; prematurity; Wallonia; article; clinical practice; female; gestational age; human; infant; major clinical study; male; neonatologist; neonatology; newborn; palliative therapy; perinatal period; qualitative research; questionnaire; terminal care; uncertainty
Background: Very preterm birth (24 to < 32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the perinatal period, whether or not to actively manage a baby born very prematurely and (ii) during the postnatal period, whether or not to continue a curative treatment plan initiated at birth. The Wallonia-Brussels Federation in Belgium counts 11 neonatal intensive care units. Methods: An inventory of key practices was compiled on the basis of an online questionnaire that was sent to the 65 neonatologists working in these units. The questionnaire investigated care-related decisions and practices during the antenatal, perinatal and postnatal periods, as well as personal opinions on the possibility of standardising and/or legislating for end-of-life decisions and practices. The participation rate was 89% (n = 58). Results: The results show a high level of homogeneity pointing to overall agreement on the main principles governing curative practice and the gestational age that can be actively managed given the current state of knowledge. There was, however, greater diversity regarding principles governing the transition to end-of-life care, as well as opinions about the need for a common protocol or law to govern such practices. Conclusion: Our results reflect the uncertainty inherent in the complex and diverse situations that are encountered in this extreme area of clinical practice, and call for qualitative research and expert debates to further document and make recommendations for best practices regarding several "gray zones" of end-of-life care in neonatology, so that high quality palliative care may be granted to all neonates concerned with end-of-life decisions.Copyright © 2018 The Author(s).
Aujoulat I; Henrard S; Charon A; Johansson AB; Langhendries JP; Mostaert A; Vermeylen D; Verellen G; Maton P; Van Overmeire B; Kalenga M; Broux I; Henrion E; Dussart A; Muller MF; Cavatorta E; Marechal Y; Vanden ES; Lecart C; Haumont D; Van Herreweghe I; Vlieghe V; Debauche C; Flausch M; Sepulchre B
BMC 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/10.1186/s12887-018-1168-x" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1168-x</a>
Fathers' experiences of their child's life-limiting condition: An attachment narrative perspective.
AAI; Attachment; childhood life-limiting illness; DMM; fathers
When a child has a life-limiting illness, parental involvement is amplified, having to respond to the increased needs of the child. Both parents are affected by the illness, yet research has largely under-represented fathers' experiences of their child's illness. Seven fathers were interviewed about their experiences with their child's life-limiting illness. In addition, fathers' attachment strategies were assessed using the Adult Attachment Interview. Narrative analysis was implemented to explore the interviews, and indicators of attachment markers employed in the Adult Attachment Interview were also identified. The dominant themes were found to be 'experience of the diagnosis', 'living with the illness', 'struggling with emotions' and 'relationship with staff'. Within each theme, there were differences which related to the father's attachment strategies. This was particularly evident in parts of their narratives recounting critical moments of threat and anxiety in the course of discovering and adjusting to their child's illness. Importantly, the findings also suggested that the experience for the fathers stressed, and in some cases disrupted, their attachment coping strategies. All fathers told stories of trying to get it right for their children and family. Their experiences of, and adjustment to, the illness were related to their attachment strategies. The clinical implications for health professionals are discussed.
Bailey-Pearce O; Stedmon J; Dallos R; Davis G
Clinical child psychology and psychiatry
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/10.1177/1359104517730115" target="_blank" rel="noreferrer noopener">10.1177/1359104517730115</a>
Protocol for a scoping review about ethics in transition programmes for adolescents and young adults with neurodisabilities
Introduction As adolescents with neurodisabilities near adulthood, they and their caregivers will face the challenge of transferring from paediatric to adult healthcare systems. Despite the growing number of programmes designed to support healthcare transitions, little is known about practices that result in positive outcomes or how ethical issues are addressed. The objective of this review is to identify and document the ethical principles that may be embedded in the vision of transitional care programmes and to map ethical issues encountered in transitional care as well as the strategies employed to recognise and address these ethical issues.Method and analysis We will document hidden and explicit ethical principles and issues from empirical studies on transition programmes for youth with neurodisabilities. An initial framework developed through a content extraction strategy will serve as a point of departure for data analysis and will be iteratively refined through our analytic process and with feedback from our stakeholders, including youth with neurodisabilities and their families. Findings will then be shared in different formats with health and social services professionals, healthcare decision and policymakers.Dissemination Scoping review results will be shared at key conferences and disseminated in peer-reviewed publications as well as plain language summaries with stakeholders and the general public. Opportunities will be sought to discuss this project and its preliminary findings with partners in the paediatric, adult healthcare and rehabilitation communities comprising young people with neurodisabilities, their families, clinicians, programme managers and researchers.
Bogossian A; Gorter JW; Racine E
BMJ Open
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1136/bmjopen-2017-020914" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2017-020914</a>
Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses
infant mortality; medical decision making; nurse attitude; physician attitude; adult; article; assisted ventilation; controlled study; enteric feeding; female; hospital policy; human; legal aspect; male; medical practice; neonatal intensive care unit; neonatal nurse; neonatologist; patient participation; prematurity; questionnaire; religion; Switzerland; terminal care; work experience
Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants. Methods: All 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between neonatologists and NICU nurses and between language regions were explored. Results: Ninety six of 121 (79%) physicians and 302 of 431(70%) nurses completed the online questionnaire. The following difficulties with end-of-life decision-making were reported more frequently by nurses than physicians: insufficient time for decision-making, legal constraints and lack of consistent unit policies. Nurses also mentioned a lack of solidarity in our society and shortage of services for disabled more often than physicians. In the context of limiting intensive care in selected circumstances, nurses considered withholding tube feedings and respiratory support less acceptable than physicians. Nurses were more reluctant to give parents full authority to decide on the course of action for their infant. In contrast to professional category (nurse or physician), language region, professional experience and religion had little influence if any on the answers given. Conclusions: Physicians and nurses differ in many aspects of how and by whom end-of-life decisions should be made in extremely preterm infants. The divergencies between nurses and physicians may be due to differences in ethics education, varying focus in patient care and direct exposure to the patients. Acknowledging these differences is important to avoid potential conflicts within the neonatal team but also with parents in the process of end-of-life decision-making in preterm infants born at the limits of viability.Copyright © 2018 The Author(s).
Bucher HU; Klein SD; Hendriks MJ; Baumann-Holzle R; Berger TM; Streuli JC; Fauchere JC; Philipp M; Roland N; Renate I; Mathias N; Liliane S; Brigitte S; Kai R; Riccardo P; Matthias R; Magali C; Ulrike S; Gudrun J; Ruth D; Jean-Claude F; Barbara D
BMC Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1186/s12887-018-1040-z" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1040-z</a>
Pattern of Readmissions Among Children with Multiple Chronic Conditions versus Children with No Chronic Conditions
Background: Children with complex chronic conditions account for a disproportionate number of hospital readmissions and are significantly more likely to be readmitted than other children. Little is known about when children with multiple conditions are at highest risk of readmission after discharge. We sought to compare predictors and timing of readmission in children with multiple chronic conditions to those in children with no chronic conditions. Methods: Using data from the 2013 National Readmissions Database, we analyzed patients aged 1 to 18 years with no chronic conditions or 4 or more chronic conditions. The daily hazard of …
Bucholz EM; Hall M; Gay J; Harris M; Berry Jay
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.142.1_MeetingAbstract.360" target="_blank" rel="noreferrer noopener">10.1542/peds.142.1_MeetingAbstract.360</a>
Social Media Consequences of Pediatric Death
bereavement; death; grief; knee prosthesis; pediatrics; social media; adolescent; article; caregiver; child; human; videorecording
Social media is an important access point for engagement of children and adolescents. For individuals with a life-limiting illness or serving as the caregiver for an ill child, social media can be a helpful outlet for support and information gathering. It has democratized the process of being remembered through providing an ongoing account of thoughts, pictures, and videos that theoretically live on forever via a digital legacy. Providers should be familiar with how this new generation uses social media during their illness, after death, and in the bereavement process.Copyright © 2018 Elsevier Inc.
Buxton DC; Vest TR
Child and Adolescent Psychiatric Clinics of North America
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.chc.2018.05.008" target="_blank" rel="noreferrer noopener">10.1016/j.chc.2018.05.008</a>
Perceived challenges in pediatric palliative care among doctors and nurses in Hong Kong
This study aims to examine perceived challenges, including knowledge, skills, self, and work environment, of professionals in providing pediatric palliative care (PPC) in Hong Kong and the differences in perceived challenges between groups. A total of 680 pediatric doctors and nurses participated in the survey. They tended to perceive the provision of PPC as difficult and considered "advanced skills" (those dealing with death-related issues) challenging. Findings indicate that nurses, professionals who are less experienced, do not have children, and have not received palliative care training perceived a higher level of challenges in providing PPC. Implications for training and support are discussed.
Chan WCH; Wong KLY; Leung MM; Lin M K Y
Death Studies
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/10.1080/07481187.2018.1478912" target="_blank" rel="noreferrer noopener">10.1080/07481187.2018.1478912</a>
Pharmacological Management of Symptoms in Children with Life-Limiting
Asia; Death; Drug Therapy; Dyspnea; Geographic Locations; Health Personnel; Health Services Accessibility Evaluation; Hospice Care; Hospitals; Human; Nausea and Vomiting; Pacific Islands; Pain Diagnosis; Palliative Care; Pediatrics; Secretions; Terminally Ill Patients; Treatment Refusal
Background: The provision of pediatric palliative care in Asia Pacific varies between countries and availability of essential medications for symptoms at the end of life in this region is unclear. Objective: To determine medications available and used in the management of six symptoms at the end of life among pediatric palliative care practitioners in Asia Pacific. To identify alternative pharmacological strategies for these six symptoms if the oral route was no longer possible and injections are refused. Design and Setting: An online survey of all Asia Pacific Hospice Palliative Care Network (APHN) members was carried out to identify medications used for six symptoms (pain, dyspnea, excessive respiratory secretions, nausea/vomiting, restlessness, seizures) in dying children. Two scenarios were of interest: (1) hours to days before death and (2) when injectables were declined or refused. Results: There were 54 responses from 18 countries. Majority (63.0%) of respondents were hospital based. About half of all respondents were from specialist palliative care services and 55.6% were from high-income countries. All respondents had access to essential analgesics. Several perceived that there were no available drugs locally to treat the five other commonly encountered symptoms. There was a wide variation in preferred drugs for treating each symptom that went beyond differences in drug availability or formulations. Conclusion: Future studies are needed to explore barriers to medication access and possible knowledge gaps among service providers in the region, so that advocacy and education endeavors by the APHN may be optimized.
Chong LA; Chong PH; Chee J
Journal of Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1089/jpm.2017.0626" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0626</a>
Making Meaning After the Death of a Child
bereavement; death; medical education; palliative therapy; storytelling; voice; article; child; controlled study; empathy; female; human; mother; narrative; skill; student; videorecording
Two bereaved mothers recount how they made meaning after the deaths of their children, recounting how opportunities to tell their stories in medical settings enabled them to construct narratives that promoted resilience and a sense of control. Pediatric palliative care can be conceived as opening space for patients and guardians to tell their stories outside of the specifics of illness, so medical teams can work to accommodate families' values and goals, thereby initiating the process of meaning making. Viewing videos of parent stories enables medical trainees to enhance their communications skills, empathy, and compassion.Copyright © 2018 Elsevier Inc.
Clancy S; Lord B
Child and Adolescent Psychiatric Clinics of North America
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.chc.2018.05.011" target="_blank" rel="noreferrer noopener">10.1016/j.chc.2018.05.011</a>
Evaluating Palliative Care Resources Available to the Public Using the Internet and Social Media
Palliative Care; Quality of Life; Human; Emotions; Health Education; Medline; Thematic Analysis; Search Engines; Facebook; Cross Sectional Studies; Health Information Evaluation; Information Seeking Behavior; Internet Utilization; Social Media Utilization; Twitter; Videorecording; World Wide Web
Background: Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. Aim: To identify resources on the Internet and social media regarding palliative care and evaluate the information conveyed. Design: A cross-sectional study of “palliative care” search results. Setting: Top 10 Google websites, top 10 most viewed YouTube videos, and social media platforms, Facebook and Twitter, were searched. Results: The most popular Google websites were mostly from national organizations promoting palliative care, whose definitions of palliative care consistently mention “quality of life” and “relief from symptoms and stress.” None of the websites mentioned children, and 77% cited palliative care as treatment for cancer with less focus on other diseases. No personal stories were included in Google websites, while 60% of YouTube videos included personal stories. Five main themes were generated from 266 YouTube video comments analyzed. The most common theme was emotionality, of which 91% were positive statements. Facebook and Twitter were mostly used by health-care professionals and not the public. Conclusions: Palliative care resources are mostly positive and consistent with the current definition of palliative care. Major Internet search engines such as Google and YouTube provide valuable insight into information the public receives about palliative care. Future development of Internet resources on palliative care should consider including children and emphasizing palliative care for all life-limiting illnesses.
Claudio CH; Dizon ZB; October TW
American Journal of Hospice & Palliative Medicine
2018
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<a href="http://doi.org/10.1177/1049909118763800" target="_blank" rel="noreferrer noopener">10.1177/1049909118763800</a>
Cardiovascular disease among women who gave birth to an infant with a major congenital anomaly
Importance Having a child with a major birth defect can be a life-changing and stressful event that may be associated with higher cardiovascular disease (CVD) risk, yet the long-term burden of CVD for the child’s mother is unknown.Objective To assess whether mothers of an infant born with a major congenital anomaly are at higher risk of CVD compared with a comparison cohort.Design, Setting, and Participants A population-based cohort study using individual-level linked registry data in Denmark included 42 943 women who gave birth to an infant with a major congenital anomaly between January 1, 1979, and December 31, 2013; and follow-up was conducted until 2015. A comparison group, comprising 428 401 randomly selected women, was 10:1 matched to each affected mother by maternal age, parity, and her infant’s year of birth. Data analyses were performed between November 1, 2017, and February 28, 2018.Exposures Live birth of an infant with a major congenital anomaly.Main Outcomes and Measures The primary outcome was a CVD composite outcome of acute myocardial infarction, coronary revascularization, or stroke. Secondary outcomes included individual components of the CVD composite and other cardiovascular outcomes, including unstable angina, congestive heart failure, atrial fibrillation, peripheral artery disease, ischemic heart disease, and aortic aneurysm. Cox proportional hazards regression analyses generated hazard ratios (HRs), adjusted for maternal demographic, socioeconomic, and chronic health indicators.Results Median maternal age at baseline was 28.8 years (interquartile range, 25.3-32.5 years). After a median follow-up of 19.5 years (interquartile range, 9.9-27.6 years), 914 women whose infant had a major congenital anomaly experienced a CVD event (1.21 per 1000 person-years; 95% CI, 1.13-1.28 per 1000 person-years) vs 7516 women in the comparison group (0.99 per 1000 person-years; 95% CI, 0.97-1.01 per 1000 person-years), corresponding to an unadjusted HR of 1.23 (95% CI, 1.15-1.32), and an adjusted HR (aHR) of 1.15 (95% CI, 1.07-1.23). Women who gave birth to an infant with multiorgan anomalies had an even higher aHR (1.37; 95% CI, 1.08-1.72). Mothers of infants with a major anomaly also had an increased aHR of the individual components of the composite outcome and the other cardiovascular outcomes.Conclusions and Relevance Women whose child had a major congenital anomaly experienced a 15% to 37% higher risk of premature cardiovascular disease. These women may benefit from targeted interventions aimed at improving their cardiovascular health.
Cohen E; Horvath-Puha E; Ray JG; et al
JAMA Network Open
2018
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<a href="http://doi.org/10.1001/jamanetworkopen.2018.2320" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2018.2320</a>
Medical Assistance in Dying at a paediatric hospital
This article explores the ethical challenges of providing Medical Assistance in Dying (MAID) in a paediatric setting. More specifically, we focus on the theoretical questions that came to light when we were asked to develop a policy for responding to MAID requests at our tertiary paediatric institution. We illuminate a central point of conceptual confusion about the nature of MAID that emerges at the level of practice, and explore the various entailments for clinicians and patients that would flow from different understandings. Finally, we consider the ethical challenges of building policy on what is still an extremely controversial social practice. While MAID is currently available to capable patients in Canada who are 18 years or older—a small but important subsection of the population our hospital serves—we write our policy with an eye to the near future when capable young people may gain access to MAID. We propose that an opportunity exists for MAID-providing institutions to reduce social stigma surrounding this practice, but not without potentially serious consequences for practitioners and institutions themselves. Thus, this paper is intended as a road map through the still-emerging legal and ethical landscape of paediatric MAID. We offer a view of the roads taken and considered along the way, and our justifications for travelling the paths we chose. By providing a record of our in-progress thinking, we hope to stimulate wider discussion about the issues and questions encountered in this work.
DeMichelis C; Zlotnik SR; Rapoport A
Journal of Medical Ethics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1136/medethics-2018-104896" target="_blank" rel="noreferrer noopener">10.1136/medethics-2018-104896</a>
Awareness of pediatric palliative care among health care workers
clinical competence; education; palliative therapy; pediatrics; attitude to health; child; health care personnel; human; psychology; questionnaire; Ukraine
Introduction: In order to develop such a relatively new type of medical care in Ukraine, as pediatric palliative care, first of all, qualified medical workers are needed. The aim: to assess the awareness of pediatric palliative care among healthcare workers providing medical services to children.Materials and methods: It was carried out a survey at health facilities of Ivano-Frankivsk region, which provided medical care for children. It was interviewed 578 healthcare workers, among them were generally practitioners - 131, primary care pediatricians - 52, pediatricians-specialists - 36, health care managers - 78, nurses - 281. The half of the respondents (57.2%) had work experience more than 20 years.Results: It was established that every fourth respondent (25.3%) did not know what is mean of pediatric palliative care. At the same time, the main object of its delivery was considered to be patients with cancer (71.5%), and not with incurable chronic diseases (54.8%). Only 59.7% of respondents knew that palliative care (PC) should begin with the diagnosis of an incurable disease, and not at the end of life, as well as half (52.6%) of them knew that the relatives of seriously ill children are object of PC. The majority of respondents recognized the lack of their knowledge of pediatric palliative care (85.8%). All answers differed depending on the position of respondents (p%#60;0.05). However, regardless of this, almost all respondents (94.5%) expressed their desire to receive proper knowledge of pediatric palliative care.Conclusion: It was established lack of knowledge on pediatric palliative care among medical workers served children. The majority of respondents recognized the lack and need of knowledge on pediatric palliative care. Overall level of knowledge among healthcare workers about palliative care was poor, and it is necessary to improve it.
Detsyk OZ; Zolotarova ZM; Stovban IV; Melnyk RM
Wiadomosci lekarskie
2018
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<a href="http://doi.org/https://europepmc.org/abstract/med/29783228" target="_blank" rel="noreferrer noopener">https://europepmc.org/abstract/med/29783228</a>
A post-mortem population survey on foetal-infantile end-of-life decisions: a research protocol
Neonates; End-of-life decisions; Mortality follow-back survey; Population-based; Stillbirths; Termination of pregnancy
BACKGROUND: The death of a child before or shortly after birth is frequently preceded by an end-of-life decision (ELD). Population-based studies of incidence and characteristics of ELDs in neonates and infants are rare, and those in the foetal-infantile period (> 22 weeks of gestation - 1 year) including both neonates and stillborns, are non-existent. However, important information is missed when decisions made before birth are overlooked. Our study protocol addresses this knowledge gap. METHODS: First, a new and encompassing framework was constructed to conceptualise ELDs in the foetal-infantile period. Next, a population mortality follow-back survey in Flanders (Belgium) was set up with physicians who certified all death certificates of stillbirths from 22 weeks of gestation onwards, and infants under the age of a year. Two largely similar questionnaires (stillbirths and neonates) were developed, pilot tested and validated, both including questions on ELDs and their preceding decision-making processes. Each death requires a postal questionnaire to be sent to the certifying physician. Anonymity of the child, parents and physician is ensured by a rigorous mailing procedure involving a lawyer as intermediary between death certificate authorities, physicians and researchers. Approval by medical societies, ethics and privacy commissions has been obtained. DISCUSSION: This research protocol is the first to study ELDs over the entire foetal-infantile period on a population level. Based on representative samples of deaths and stillbirths and applying a trustworthy anonymity procedure, the research protocol can be used in other countries, irrespective of legal frameworks around perinatal end-of-life decision-making.
Dombrecht L; Beernaert K; Roets E; Chambaere K; Cools F; Goossens L; Naulaers G; De Catte L; Cohen J; Deliens L
BMC Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1186/s12887-018-1218-4" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1218-4</a>
Cannabis for pediatric epilepsy: protocol for a living systematic review.
Cannabidiol; Cannabinoids; Cannabis; Efficacy; Living systematic review; Meta-analysis; Pediatric epilepsy; Safety; Seizure
BACKGROUND: Pediatric epilepsy, including treatment-resistant forms, has a major effect on the quality of life, morbidity, and mortality of affected children. Interest has been growing in the use of medical cannabis as a treatment for pediatric epilepsy, yet there has been no comprehensive review of the benefits and harms of cannabis use in this population. In this systematic review, we will search for, synthesize, and assess the published and gray literature in order to provide usable and relevant information to parents, clinicians, and policy makers. METHODS: We will perform a living systematic review of studies involving the use of cannabis to treat pediatric epilepsy. We will search the published and gray literature for studies involving children with any type of epilepsy taking any form of cannabis. Studies will be selected for inclusion by two independent reviewers. The primary outcome is seizure freedom. Secondary outcomes are seizure frequency, quality of life (child, caregiver), quality and quantity of sleep, status epilepticus, tonic-clonic seizures, death (all-cause, sudden unexpected death in epilepsy), gastrointestinal adverse events (diarrhea, vomiting), and visits to the emergency room. The quality of each included study will be assessed. If data are sufficient in quantity and sufficiently similar, we will conduct pairwise random-effects meta-analysis. We will repeat the literature search every 6 months to identify studies published after the previous search date. Sequential meta-analysis will be performed as necessary to update the review findings. DISCUSSION: Our review aims to provide a comprehensive and up-to-date summary of the available evidence to inform decisions about the use of cannabis in children with treatment-resistant epilepsy. The results of this review will be of use to parents, clinicians, and policy makers as they navigate this rapidly evolving area. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018084755.
Elliott J; DeJean D; Clifford T; Coyle D; Potter B; Skidmore B; Alexander C; Repetski AE; McCoy B; Wells GA
Systematic reviews
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/10.1186/s13643-018-0761-2" target="_blank" rel="noreferrer noopener">10.1186/s13643-018-0761-2</a>
Withdrawal of artificial nutrition and hydration in neonatal intensive care: parents' and healthcare practitioners' views
Health Personnel/es [Ethics]; Health Personnel/px [Psychology]; Intensive Care Units; Parents/px [Psychology]; Withholding Treatment/es [Ethics]; Decision Making/es [Ethics]; France; Humans; Infant; Interviews as Topic; Morals; Neonatal/es [Ethics]; Newborn
Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the stakeholders' experience is, and whether they consider it ethically appropriate. In order to contribute to the debate, we initiated a study in 2009 to evaluate parental and health care professionals (HCP) perspectives, after they experienced WAHN for a newborn. The study included 25 cases from 5 different clinical neonatology departments. We interviewed both the parents and some of the HCP who cared for the baby, at least 6 months after this latter deceased. We proceeded through in-depth individual qualitative interviews. Content was analyzed for themes and patterns that emerged from the data. Some parents expressed that WANH offered an opportunity to the family to spend a few demedicalized days with the baby before she dies, without any tubes and machines, and to be well supported by the HCP during this palliative stage. But others evaluated the practice in retrospect as a terrible ordeal. All said that, at least, the time of waiting for death to ensue should not last too long. After a few days, it becomes unbearable because of the transformation of the baby's appearance and because they, as parents, began to wonder if she was not dying from starvation rather than from her initial disease. An important proportion of HCP also expressed some kind of ethical unease. This was due to the psychological violence involved in the decision for a human being to stop feeding a little one, and also to the difficulty to deal with the fundamental intention behind the decision of WANH: indeed, could it be claim that it does not presuppose the intention of provoking the infant's death? The discussion focuses on the point to know if WANH can be considered as a source of progress from an ethical point of view, particularly in comparison with earlier practices-that in France could involve active euthanasia by lethal injection. We argue that when HCP are merely focused on avoiding that WAHN could be construed as a way of intending to hasten the baby's death, the practice is at risk to be implemented in a way that becomes ethically counterproductive. Focusing on this intention easily distract the clinical teams from what should be their ultimate concern, namely the baby's comfort during the dying process, as well as the support owned to her parents. To conclude, we suggest that the ethical priorities, when WANH is decided, should be the support due to the patient and her family on the one hand, and, on the other hand to implement it in such a way that at least the baby seems to have died of her initial disease and never of starvation. This means that HCP have a duty to control the timing of death, even though this might be incompatible with the worry to avoid the intention of hastening the baby's death.
Fournier V; Belghiti E; Brunet L; Spranzi M
Medicine, Health Care & Philosophy
2017
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<a href="http://doi.org/10.1007/s11019-017-9754-5" target="_blank" rel="noreferrer noopener">10.1007/s11019-017-9754-5</a>
Information needs of young people with cerebral palsy and their families during the transition to adulthood: a scoping review
The transition to adulthood is a developmental phase which occurs as young people move from adolescence into adulthood. Young people with disabilities, including cerebral palsy (CP), and their families have reported challenges during the transition to adulthood because they are required to move to adult supports and services, which are often fragmented and bring about new questions and expectations to find necessary supports. Young people and their parents have been found to lack information about where to find services in adulthood, how to access the services and what to ask during the transitional process. The aim of this scoping review was to explore the information needs of young people with CP and their families during the transition to adulthood. The goal is to map the current published evidence within the transition to adulthood literature base to explore what is known about information needs during the transition to adulthood of young people with CP and their parents. This review seeks to synthesize what is known about information content, timing, methods of provision and delivery. Databases searched were OVID Medline, CINAL, ERIC, EMBASE, PsycINFO, Web of Science, Social Science Abstracts and Sociological Abstracts. Initially 675 articles were retrieved. Four hundred and forty-two articles were selected for title review. Two hundred and five articles remained for abstract review. Seventeen articles were included for full-text review. Eleven articles were included in this review. Data were organized into five themes: (1) identified information needs during the transition to adulthood (content), (2) identified recommended providers of information during the transition to adulthood (who), (3) identified delivery methods of information during the transition to adulthood (how), (4) identified timing of information delivery of information during the transition to adulthood (when) and (5) location of information provided during the transition to adulthood (where). This review found that young people with CP, their families and adult providers all possess information needs during the transition to adulthood. Young people with CP and their families seek information about what adult services will look like and how to access supports. Adult providers require information about CP. Youth with CP prefer individualized information be delivered to them when needed rather than presented in group sessions or via paper handout. Other recommendations included the development of parent support networks to assist parents in the transition to adulthood. The opportunity to learn from real-life experiences was also viewed as an important source of information as well as method to provide information.
Freeman M; Stewart D; Cunningham CE; Gorter JW
Journal of Transition Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1515/jtm-2018-0003" target="_blank" rel="noreferrer noopener">10.1515/jtm-2018-0003</a>
The Belgian euthanasia law and its impact on the practises of Belgian paediatric palliative care teams.
Friedel M; deTerwangne B; Brichard B; Ruysseveldt I; Renard M
International journal of palliative 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/10.12968/ijpn.2018.24.7.333" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2018.24.7.333</a>
A Systematic Review of Race/Ethnicity and Parental Treatment Decision-Making.
Caregivers; Clinical; Databases; Decision Making; Ethnic Groups; Health Resource Utilization; Human; Parental Attitudes; Patient Compliance; Pediatrics; Physician Attitudes; Race Factors; Systematic Review; Terminally Ill Patients
Patient race/ethnicity affects health care utilization, provider trust, and treatment choice. It is uncertain how these influences affect pediatric care. We performed a systematic review (PubMed, Scopus, Web of Science, PsycINFO, Cochrane, and Embase) for articles examining race/ethnicity and parental treatment decision-making, adhering to PRISMA methodology. A total of 9200 studies were identified, and 17 met inclusion criteria. Studies focused on treatment decisions concerning end-of-life care, human papillomavirus vaccination, urological surgery, medication regimens, and dental care. Findings were not uniform between studies; however, pooled results showed (1) racial/ethnic minorities tended to prefer more aggressive end-of-life care; (2) familial tradition of neonatal circumcision influenced the decision to circumcise; and (3) non-Hispanic Whites were less likely to pursue human papillomavirus vaccination but more likely to complete the vaccine series if initiated. The paucity of studies precluded overarching findings regarding the influence of race/ethnicity on parental treatment decisions. Further investigation may improve family-centered communication, parent engagement, and shared decision-making.
Harris VC; Links AR; Walsh J; Schoo DP; Lee AH; Tunkel DE; Boss EF
Clinical Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1177/0009922818788307" target="_blank" rel="noreferrer noopener">10.1177/0009922818788307</a>
Fifteen-minute consultation: Developing an advance care plan in partnership with the child and family
palliative therapy; advance care planning; article; child; female; human; human experiment; male; writing
An advance care plan (ACP) is the record of a discussion between an individual (where possible), their professional care givers and those close to them about their future care. When performed well, the process provides all those involved with the opportunity to talk honestly about the future allowing children and their families to retain autonomy and to influence how they are looked after. While this may represent a difficult area of practice for healthcare professionals, both staff and families appear to benefit when the process is fully informed and the child and family are actively involved. This article is enriched by the insight of two bereaved parents, who have engaged actively with the process of advance care planning. As a multidisciplinary writing team, we aim to share our experiences, in the context of recent national guidance, on the use of ACPs.Copyright © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Harrop E J; Boyce K; Beale T; Brombley K
Archives of Disease in Childhood: Education and Practice Edition
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2017-314430" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314430</a>
Grief and growth in bereaved siblings: Interactions between different sources of social support
Bereavement; Grief; Interpersonal Interaction; Siblings; Social Support
The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings’ grief and grief-related growth and to examine whether nonparental sources of social support buffer the effects of low parent support on bereaved siblings. Families (N = 85) were recruited from cancer registries at 3 pediatric institutions 3–12 months after a child’s death. Bereaved siblings were 8–18 years old (M = 12.39, SD = 2.65) and majority female (58%) and White (74%). During home visits, siblings reported their perceptions of social support from parental and nonparental sources using the Social Support Scale for Children, as well as grief and grief-related growth using the Hogan Sibling Inventory of Bereavement. Parent, friend, and teacher support were positively correlated with grief-related growth, whereas parent and peer support were negatively correlated with grief for adolescents. Teacher and friend support significantly moderated the association between parent support and grief such that teacher and friend support accentuated the positive effects of parent support. Friend and peer support moderated associations between parent support and grief/growth for adolescents but not children. School-based social support, namely from friends, peers, and teachers, appears to facilitate the adjustment of bereaved siblings. Findings suggest that bereaved siblings may benefit from enhanced support from teachers and friends regardless of age, with middle/high school students particularly benefitting from increased support from close friends and peers. (PsycINFO Database Record (c) 2018 APA, all rights reserved) Impact and Implications—This study suggests that school-based social support may enhance the positive effect of parental support for bereaved siblings and, in the case of peer support, compensate for low parental support. Thus, bereaved siblings may benefit from social support from teachers and close friends across ages, with adolescents in middle/high school particularly benefitting from social support from peers and close friends. (PsycINFO Database Record (c) 2018 APA, all rights reserved)
Howard SKM; Russell C; Keim M; Barrera Maru; Gilmer Mary Jo; Foster AT; Compas BE; Fairclough DL; Davies B; Hogan Nancy; Young-Saleme T; Vannatta K; Gerhardt CA
School Psychology Quarterly
2018
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<a href="http://doi.org/10.1037/spq0000253" target="_blank" rel="noreferrer noopener">10.1037/spq0000253</a>
Evaluation of a pilot service to help young people with life-limiting conditions transition from children's palliative care services.
Day hospice; Palliative; Respite care; Transition; Young people
BACKGROUND: When young people with life-limiting diagnoses become too old for children's hospice services, they often experience challenges transitioning into adult services. A two-year pilot project was developed to try to aid transitioning, which involved a day service with occasional overnight trips. AIM: To evaluate the pilot project. METHOD: Three focus groups made up of key stakeholders (young people, their parents and staff) were set up and analysed using an adopted thematic analysis framework. RESULTS: The participants consisted of three young people, seven parents and six staff members. Participants described the transition period as a difficult time for both young people and their families, with a perceived lack of adult services available. All groups agreed that the pilot had a positive impact on young people and their families and all were keen for the project to continue. CONCLUSION: This pilot models a service that could be adopted by other organisations in order to aid the transition between child and adult hospice services, with further potential for application in mental health and special needs services.
Hutcheson S; Maguire H; White C
International journal of palliative 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/10.12968/ijpn.2018.24.7.322" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2018.24.7.322</a>
Evaluating Curricular Modules in the Care of Children with Medical Complexity: A Mixed-Methods Randomized Controlled Trial
Huth K; Audcent T; Long-Gagne S; Sbrocchi AM; Weiser N; Miller D; Arje D; Major N; Issa K; Cohen E; Orkin J
Academic 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/10.1016/j.acap.2018.04.075" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2018.04.075</a>
A qualitative study of health care professionals’ views and experiences of paediatric advance care planning
Adolescence; Advance Care Planning; Attitude of Health Personnel; Child; Community -- England; Conversation; Death; Documentation; England; Family Attitudes; Hospices -- England; Hospital; Hospitals; Human; Infant; Medical Staff; Multidisciplinary Care Team; Newborn; Palliative Care; Pediatric Care -- Psychosocial Factors; Preschool; Qualitative Studies; Semi-Structured Interview; Terminal Care; Thematic Analysis; Time Factors
Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals’ views and experiences of paediatric advance care planning in hospitals, community settings and hospices. Methods A qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0–18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children’s hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. Results Twenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff. Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. Conclusion The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family.
Jack BA; Mitchell TK; O'Brien MR; Silverio SA; Knighting K
BMC Palliative Care
2018
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<a href="http://doi.org/10.1186/s12904-018-0347-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0347-8</a>
Bittersweet: a qualitative exploration of mothers' experiences of raising a single surviving twin
Bereavement; Conceptual Framework; Facebook; Family Coping; Grief; Human; Maternal Attitudes; Maternal Role; Multiple Offspring; Narratives; Parenting; Psychosocial; Qualitative Studies; Self Concept; Social Identity; Support; Surveys; Thematic Analysis; Twins; United Kingdom
Loss of a child from a multiple birth pregnancy is not uncommon yet the idiographic experience of parents who have lost a single twin from a multiple birth pregnancy is underexplored. This novel study sought to explore the experiences of mothers bereaved after loss of a twin from a multiple birth pregnancy, focusing on the dual challenges of parenting and grieving. Eighteen mothers at least 12 months post loss were recruited from a private UK based Facebook page dedicated to supporting parents after loss from a multiple birth. Eligible mothers completed an independent qualitative open-ended survey to explore maternal experiences of loss. Data were analysed using Thematic Analysis. Findings represented a sense of duality for participants, with mothers experiencing conflict between roles and identities as well as the nature of their loss. Key themes identified include 'Narrating a story of family and loss', 'Finding a place for the twins within the family' and 'A changing sense of self'. Findings fit with theoretical conceptualisations of bereavement that acknowledge retaining relationships with the deceased. Practically, suggestions for supporting mothers to identify stock answers to often asked questions about family make up were suggested.
Jordan A; Smith P; Rodham K
Psychology, Health & 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/10.1080/13548506.2018.1434215" target="_blank" rel="noreferrer noopener">10.1080/13548506.2018.1434215</a>
Compassionate Discharges From the PICU
OBJECTIVES: This article focuses on compassionate discharge from an ICU setting for pediatric patients. DATA SOURCES: Not Applicable. STUDY SELECTION: Not Applicable. DATA EXTRACTION: Not Applicable. DATA SYNTHESIS: The rationale for compassionate discharge is described, along with suggestions for assessing feasibility. A patient case highlights the potential benefits of and provides specific examples of steps involved in the process. A general framework for consideration of compassionate discharge, along with a checklist, is provided to highlight the importance of detailed planning and communication. CONCLUSIONS: Although many children die in an ICU setting, some families desire end-of-life care in a nonhospital setting, often at home. For children dependent on technology, there are considerable logistical challenges to overcome, and it may not always be possible. However, with meticulous planning and close collaboration between intensive care staff, palliative care staff, and other community services, compassionate discharge can be done successfully and provide the child and family the opportunity for end-of-life care in the place most meaningful to them.
Kang TI; Hynson J
Pediatric Critical Care Medicine
2018
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<a href="http://doi.org/10.1097/pcc.0000000000001588" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000001588</a>
Childhood Bereavement and Lower Stress Resilience in Late Adolescence.
Adolescent health; Childhood bereavement; Stress resilience
PURPOSE: Although childhood traumatic experiences are recognized as important determinants for adolescent psychiatric health in general, our objective was to explore the specific influence of childhood bereavement on the stress resilience development trajectory. METHODS: In this national register-based cohort study, we identified 407,639 men born in Sweden between 1973 and 1983, who underwent compulsory military enlistment examinations in late adolescence, including measures of psychological stress resilience. We defined exposure as loss of a first-degree family member in childhood, and estimated relative risk ratios (RRRs) for reduced (moderate or low), compared with high, stress resilience with 95% confidence intervals (CIs) using multinomial logistic regression. RESULTS: Loss of a parent or sibling in childhood conferred a 49% increased risk of subsequent low stress resilience (RRR, 1.49, 95% CI, 1.41-1.57) and an 8% increased risk of moderate stress resilience (RRR, 1.08, 95% CI, 1.03-1.13) in late adolescence. There was also a graded increase in risk with increasing age at loss; teenagers were at higher risk for low resilience (RRR, 1.64, 95% CI, 1.52-1.77) than children aged 7-12 (RRR, 1.47, 95% CI, 1.34-1.61) and
Kennedy B; Chen R; Valdimarsdottir U; Montgomery S; Fang F; Fall K
The Journal of adolescent health : official publication of the Society for Adolescent 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/10.1016/j.jadohealth.2018.02.002" target="_blank" rel="noreferrer noopener">10.1016/j.jadohealth.2018.02.002</a>
Transition from children's to adult services for young adults with life-limiting conditions: A realist review of the literature
Terminally Ill; Transition to Adult Care; Adolescent; Adult; Child; Humans; Young Adult
BACKGROUND: Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, which means they must make the transition from children's to adult services. This has proved a challenging process for both young adults and service providers, with complex transition interventions interacting in unpredictable ways with local contexts. OBJECTIVES: To explain how intervention processes interact with contextual factors to help transition from children's to adult services for young adults with life-limiting conditions. DESIGN: Systematic realist review of the literature. DATA SOURCES: Literature was sourced from four electronic databases: Embase, MEDLINE, Science Direct and Cochrane Library from January 1995 to April 2016. This was supplemented with a search in Google Scholar and articles sourced from reference lists of included papers. REVIEW METHODS: Data were extracted using an adapted standardised data extraction tool which included identifying information related to interventions, mechanisms, contextual influences and outcomes. Two reviewers assessed the relevance of papers based on the inclusion criteria. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme tools. RESULTS: 78 articles were included in the review. Six interventions were identified related to an effective transition to adult services. Contextual factors include the need for children's service providers to collaborate with adult service providers to prepare an environment with knowledgeable staff and adequate resources. Mechanisms triggered by the interventions include a sense of empowerment and agency amongst all stakeholders. CONCLUSIONS: Early planning, collaboration between children's and adult service providers, and a focus on increasing the young adults' confidence in decision-making and engaging with adult services, are vital to a successful transition. Interventions should be tailored to their context and focused not only on organisational procedures but on equipping young adults, parents/carers and staff to engage with each other effectively.
Kerr H; Price J; Nicholl H; O'Halloran P
International Journal of Nursing Studies
2017
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<a href="http://doi.org/10.1016/j.ijnurstu.2017.06.013" target="_blank" rel="noreferrer noopener">10.1016/j.ijnurstu.2017.06.013</a>
Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices
Adult; Content Analysis; Convenience Sample; Cross Sectional Studies; Data Analysis Software; Descriptive Research; Descriptive Statistics; Health Services Needs and Demand; Hospice Care; Human; Terminally Ill Patients -- In Adulthood; Thematic Analysis; United Kingdom; Young Adult
AIM: The aim of this study was to seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. BACKGROUND: Internationally, there are a growing number of young adults with life-limiting conditions and/or complex needs which are degenerative, progressive and diverse and involve complex life-long symptom, medication management as well as palliative care. There are 55,721 young adults, aged 18-40 in England, which continues to increase. The hospice sector is experiencing demands to extend services for this population despite concerns about the appropriateness of adult hospices and their nursing staff to provide care for the complex and unfamiliar conditions of this patient group. Evidence is needed of hospices' views and the main challenges faced providing services for young adults. DESIGN: Descriptive cross-sectional survey. METHODS: xChildren and adult hospices completed an online survey exploring service provision and their views of respite care for young adults with life-limiting conditions from 18 years old and onward. Data were collected between October 2015 - February 2016. FINDINGS: Respondents (N = 76 hospices) reported that children's hospices predominantly provided short breaks and end-of-life care; adult hospices provided mainly symptom management, end-of-life care and day services. Main challenges were lack of existing adult respite services; lack of funding and capacity; lack of a skilled workforce in adult hospices; and the need for better integrated service provision. CONCLUSION: Examples of good collaborative working were reported. With an increasing population of young adults and pressure on families, it is vital that services work together to find sustainable solutions to the challenges.
Knighting K; Bray L; Downing J; Kirkcaldy AJ; Mitchell TK; O'Brien MR; Pilkington M; Jack Barbara A
Journal of Advanced Nursing
2018
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<a href="http://doi.org/10.1111/jan.13702" target="_blank" rel="noreferrer noopener">10.1111/jan.13702</a>
Prior trauma exposure and serious illness at end of life: A national study of children in the US foster care system from 2005 to 2015
Context: Children in foster care suffer with serious illness at end of life. However, the relationship between prior trauma exposure and serious illness has received little empirical attention.Objectives: The objectives were to examine the prevalence and type of trauma exposure, and investigate the relationship between prior trauma and serious illness among foster children at end of life.Methods: We used national longitudinal foster care data. We included children who were less than 18 years with residence in the United States. Serious illness (i.e., physical health, mental/behavioral health, developmental disabilities) was measured via the foster care files.
Lindley LC; Slayter EM
Journal of Pain and Symptom Management
2018
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.06.001" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.06.001</a>
End-of-Life Care for Hispanic Children: A Study of California Medicaid Beneficiaries
Emergency Service; Hispanic Americans; Hospice Care/ut [Utilization]; Hospices/ut [Utilization]; Hospitalization; Palliative Care/ut [Utilization]; Terminal Care/mt [Methods]; Adolescent; California; Cardiovascular Diseases/mo [Mortality]; Child; Congenital Abnormalities/mo [Mortality]; Delivery of Health Care; Female; Health Services Accessibility; Hospital/ut [Utilization]; Humans; Infant; Male; Medicaid; Neoplasms/mo [Mortality]; Policy; Preschool; United States; Young Adult
INTRODUCTION: More than 8,000 Hispanic children die annually in the United States; yet little is known about the end-of-life care utilized. The purpose of this study was to examine the children and family characteristics associated with end-of-life care for Hispanic children. METHOD: A sample of 370 Hispanic children was created, using the 2009-2010 California Medicaid data. The relationship between child and family characteristics and end-of-life care utilization (i.e., hospice enrollment, emergency room utilization, hospital admissions) was analyzed using multivariate regression. RESULTS: Pediatric hospice accessibility (p < .05), palliative care policy (p < .01), congenital anomalies (p < .01), and cardiovascular conditions (p < .01) were related to hospice enrollment. Usual source of care (p < .001), functional status (p < .001), palliative care policy (p < .01), and private insurance (p < .01) were associated with emergency room utilization, while usual source of care (p < .001), cancer (p < .001), and disability status (p < .01) corresponded with hospital admissions. CONCLUSION: Nursing practices aimed at engaging Hispanic families in their community are critical to end-of-life care utilization for Hispanic children.
Lindley LC; Trujillo LV
Hispanic Health Care International
2016
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<a href="http://doi.org/10.1177/1540415316670900" target="_blank" rel="noreferrer noopener">10.1177/1540415316670900</a>
All cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014
Aim Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994–2014. Methods We obtained data on 9462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases. Results The all‐cause mortality rate decreased by 52% over the study period, and infants below one year accounted for 61% of all deaths. The decline in infant mortality (26%) primarily reflected fewer deaths due to congenital malformations and chromosomal abnormalities (68%) and perinatal deaths (30%). In children aged one year to 17 years, the substantial decrease (65%) was due to external causes (75%) and neoplasms (57%). The relative proportion of hospital deaths increased, while home deaths decreased. Conclusion All‐cause mortality rate decreased markedly, and the relative proportion of hospital deaths increased. The results may reflect more aggressive and effective treatment attempts to save lives, but some terminally ill children may be deprived of the option of dying at home.
Lykke C; Ekholm O; Schmiegelow K; Olsen M; Sjagren P
Acta Paediatrica
2018
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<a href="http://doi.org/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">10.1111/apa.14331</a>
Hospitalizations for mitochondrial disease across the lifespan in the U.S
Hospitalization/sn [Statistics & Numerical Data]; Mitochondrial Diseases/ep [Epidemiology]; Adolescent; Adult; Child; Cost of Illness; Cross-Sectional Studies; Databases; Factual; Female; Health Services Research; Hospital Mortality; Hospitalization/ec [Economics]; Humans; Infant; Longitudinal Studies; Male; Middle Aged; Mitochondrial Diseases/ec [Economics]; Mitochondrial Diseases/mo [Mortality]; Preschool; United States/ep [Epidemiology]; Young Adult
IMPORTANCE: Mitochondrial disease is being diagnosed with increasing frequency. Although children with mitochondrial disease often have severe, life-limiting illnesses, many survive into adulthood. There is, however, limited information about the impact of mitochondrial disease on healthcare utilization in the U.S. across the lifespan., OBJECTIVES: To describe the characteristics of inpatient hospitalizations related to mitochondrial disease in the U.S., to identify patient-level clinical factors associated with in-hospital mortality, and to estimate the burden of hospitalizations on individual patients., DESIGN: Cross-sectional and longitudinal observational studies., SETTING: U.S. hospitals., PARTICIPANTS: Individuals with hospital discharges included in the triennial Healthcare Cost and Utilization Project (HCUP) Kids Inpatient Database (KID) and the National Inpatient Sample (NIS) in 2012 (cross-sectional analysis); individuals with hospital discharges included in the HCUP California State Inpatient Database from 2007 to 2011, inclusive (longitudinal analysis)., EXPOSURE: Hospital discharge associated with a diagnosis of mitochondrial disease., MAIN OUTCOME MEASURES: Total number and rate of hospitalizations for individuals with mitochondrial disease (International Classification of Diseases, 9th revision, Clinical Modification code 277.87, disorder of mitochondrial metabolism); in-hospital mortality., RESULTS: In the 2012, there were approximately 3200 inpatient pediatric hospitalizations (1.9 per 100,000 population) and 2000 inpatient adult hospitalizations (0.8 per 100,000 population) for mitochondrial disease in the U.S., with associated direct medical costs of $113million. In-hospital mortality rates were 2.4% for children and 3.0% for adults, far exceeding population averages. Higher socioeconomic status was associated with both having a diagnosis of mitochondrial disease and with higher in-hospital mortality. From 2007 to 2011 in California, 495 individuals had at least one admission with a diagnosis of mitochondrial disease. Patients had a median of 1.1 hospitalizations (IQI, 0.6-2.2) per calendar year of follow-up; infants under 2y were hospitalized more frequently than other age groups. Over up to five years of follow up, 9.9% of participants with any hospitalization for mitochondrial disease were noted to have an in-hospital death., CONCLUSIONS AND RELEVANCE: Hospitalizations for pediatric and adult mitochondrial diseases are associated with serious illnesses, substantial costs, and significant patient time. Identification of opportunities to prevent or shorten such hospitalizations should be the focus of future studies.Copyright © 2017 Elsevier Inc. All rights reserved.
McCormack SE; Xiao Rui; Kilbaugh TJ; Karlsson M; Ganetzky RD; Cunningham ZZ; Goldstein A; Falk MJ; Damrauer SM
Molecular genetics and metabolism
2017
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<a href="http://doi.org/10.1016/j.ymgme.2017.04.007" target="_blank" rel="noreferrer noopener">10.1016/j.ymgme.2017.04.007</a>
Let's Work Together: Collaborative Research Is Needed to Overcome Difficulty Enrolling Families for Bereaved Sibling Research.
Miller EG; Hildenbrand AK; Taggi-Pinto A; Alderfer MA
Journal of pain and symptom management
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.jpainsymman.2018.03.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.03.015</a>
The journey through care: study protocol for a longitudinal qualitative interview study to investigate the healthcare experiences and preferences of children and young people with life-limiting and life-threatening conditions and their families in the West Midlands, UK
Family/px [Psychology]; Palliative Care/es [Ethics]; Palliative Care/mt [Methods]; Patient Preference/px [Psychology]; Adolescent; Child; Female; Humans; Longitudinal Studies; Male; Preschool; Qualitative Research; Quality of Health Care/og [Organization & Administration]; Research Design; United Kingdom
INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their conditions are often complex and highly unpredictable. Palliative care is advocated for people with life-limiting and life-threatening conditions, but these services for children are highly variable in terms of availability and scope. Little is known about the lived experiences and preferences of children and their families in terms of the palliative care that they do, or do not, receive. This study aims to produce an in-depth insight into the experiences and preferences of such children and families in order to develop recommendations for the future provision of services. The study will be carried out in the West Midlands, UK. METHODS AND ANALYSIS: A qualitative study comprising longitudinal interviews over a 12-month period with children (aged 5-18 years) living with life-limiting or life-threatening conditions and their family members. Data analysis will start with thematic analysis, followed by narrative and cross-case analysis to examine changing experiences and preferences over time, at the family level and within the wider healthcare system. Patient and public involvement (PPI) has informed the design and conduct of the study. Findings will be used to develop recommendations for an integrated model of palliative care for children in partnership with the patient and public involvement (PPI) group. ETHICS AND DISSEMINATION: Ethical approval was granted in September 2016 by the National Health Service Health Research Authority (IRAS ID: 196816, REC reference: 16/WM/0272). Findings will be of immediate relevance to healthcare providers, policy-makers, commissioners and voluntary sector organisations in the UK and internationally. Reports will be prepared for these audiences, as well as for children and their families, alongside academic outputs.
Mitchell S; Slowther AM; Coad J; Dale J
BMJ Open
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1136/bmjopen-2017-018266" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2017-018266</a>
Research barriers in children and young people with life-limiting conditions: a survey.
clinical decisions; ethics; methodological research; paediatrics; symptoms and symptom management
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to research. OBJECTIVES: To explore the reported experiences, difficulties and proposed solutions of chief investigators (CIs) recruiting CYP with LLCs/LTIs and families in the UK. METHODS: 61 CIs conducting studies with CYP with LLCs/LTIs and their families, identified from the UK National Institute of Health Research portfolio, completed an anonymous, web-based questionnaire, including both closed and open-ended questions. Descriptive statistics and inductive and deductive coding were used to analyse responses. RESULTS: UK CIs cited limitations on funding, governance procedures including Research and Development, Site-Specific and REC approval processes, and clinician gatekeeping as challenges to research. CIs offered some solutions to overcome identified barriers such as working with CYP and their families to ensure their needs are adequately considered in study design and communicated to ethics committees; and designing studies with broad inclusion criteria and developing effective relationships with clinicians in order to overcome clinician gatekeeping. CONCLUSIONS: Many of the challenges and solutions reported by UK CIs have applicability beyond the UK setting. The involvement of clinicians, patients and their families at the inception of and throughout paediatric palliative care research studies is essential. Other important strategies include having clinician research champions and increasing the visibility of research. Further research on the perspectives of all stakeholders, leading to mutually agreed guidance, is required if care and treatment are to improve.
Peake JN; Beecham E; Oostendorp LJM; Hudson Briony F; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M
BMJ supportive & palliative care
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjspcare-2018-001521" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001521</a>
Research barriers in children and young people with life-limiting conditions: a survey
clinical decisions; ethics; methodological research; paediatrics; symptoms and symptom management
Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to research. OBJECTIVES: To explore the reported experiences, difficulties and proposed solutions of chief investigators (CIs) recruiting CYP with LLCs/LTIs and families in the UK. METHODS: 61 CIs conducting studies with CYP with LLCs/LTIs and their families, identified from the UK National Institute of Health Research portfolio, completed an anonymous, web-based questionnaire, including both closed and open-ended questions. Descriptive statistics and inductive and deductive coding were used to analyse responses. RESULTS: UK CIs cited limitations on funding, governance procedures including Research and Development, Site-Specific and REC approval processes, and clinician gatekeeping as challenges to research. CIs offered some solutions to overcome identified barriers such as working with CYP and their families to ensure their needs are adequately considered in study design and communicated to ethics committees; and designing studies with broad inclusion criteria and developing effective relationships with clinicians in order to overcome clinician gatekeeping. CONCLUSIONS: Many of the challenges and solutions reported by UK CIs have applicability beyond the UK setting. The involvement of clinicians, patients and their families at the inception of and throughout paediatric palliative care research studies is essential. Other important strategies include having clinician research champions and increasing the visibility of research. Further research on the perspectives of all stakeholders, leading to mutually agreed guidance, is required if care and treatment are to improve.
Peake JN; Beecham E; Oostendorp LJM; Hudson BF; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M
BMJ Supportive & Palliative Care
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1136/bmjspcare-2018-001521" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001521</a>
Intranasal fentanyl for respiratory distress in children and adolescents
Palliative Care; Infant; Preschool; Adolescence; Child; Descriptive Statistics; Human; Administration; Record Review; Pediatric Care; Fentanyl Administration and Dosage; Fentanyl Adverse Effects; Fentanyl Therapeutic Use; Treatment Outcomes; Acute Drug Therapy; Intranasal; Respiratory Distress Syndrome
Respiratory distress is one of the most common and frightening symptoms of children with life-limiting conditions. Because treatment of the underlying cause is frequently impossible or insufficient, in many children, symptomatic treatment is warranted. The purpose of this study was to describe the circumstances of the use of intranasal fentanyl in an acute attack of respiratory distress (AARD) in children receiving palliative care, as well as to describe outcomes and adverse events after its use. Methods Children and adolescents treated in a pediatric palliative unit or attended by a specialized home care team between 2010 and 2016 were included in this study. A retrospective chart review was conducted of those who were treated with intranasal fentanyl for an AARD. Results During the study period 16 children (0.5–18.6 years) with various life-limiting conditions were treated with intranasal fentanyl for AARD. In total, 70 AARDs were analyzed. In 74% of all AARDs, a single dose of intranasal fentanyl was used. Frequent causes for an AARD were excessive secretions and acute respiratory infection. The median starting dose of intranasal fentanyl was 1.5 μg/kg body weight. Labored breathing (96%), tachypnea (79%) and related suffering (97%) improved after treatment. An adverse event occurred in one child. Conclusions Intranasal fentanyl may be a safe and effective medication for the treatment of acute attacks of respiratory distress in children with life-limiting conditions. However, prospective studies with larger sample sizes and a control group are needed to validate these findings.
Pieper L; Wager J; Zernikow B
BMC Palliative Care
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1186/s12904-018-0361-x" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0361-x</a>
Always a burden? Healthcare providers' perspectives on moral distress
Humans; Intensive Care Units; Stress; Attitude of Health Personnel; Female; Male; Adult; Qualitative Research; Intensive Care; Terminal Care/es [Ethics]; Terminal Care/px [Psychology]; Morals; Job Satisfaction; Psychological; Neonatal; Burnout; Terminal Care; Health Personnel/px [Psychology]; Professional/px [Psychology]; Neonatal/sn [Statistics & Numerical Data]; Neonatal/es [Ethics]; Burnout; Intensive Care; Stress; Neonatal/px [Psychology]; Professional; Professional/et [Etiology]; Professional/pc [Prevention & Control]; Psychological/et [Etiology]; Psychological/pc [Prevention & Control]
BACKGROUND: Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. OBJECTIVE: To explore clinical experiences, perspectives and perceptions of moral distress in neonatology. DESIGN: An anonymous questionnaire was distributed to medical and nursing providers within two tertiary level neonatal intensive care units (NICUs)-one surgical and one perinatal-seeking their understanding of the term and their experience of it. Open-ended questions were analysed using qualitative methodology. RESULTS: A total of 345 healthcare providers from two NICUs participated (80% response rate): 286 nurses and 59 medical providers. Moral distress was correctly identified as constrained moral judgement resulting in distress by 93% of participants. However, in practice the term moral distress was also used as an umbrella term to articulate different forms of distress. Moral distress was experienced by 72% of providers at least once a month. Yet despite the negative sequelae of moral distress, few (8% medical, 21% nursing providers) thought that moral distress should be eliminated from the NICU. Open-ended responses revealed that while interventions were desired to decrease the negative impacts of moral distress, moral distress was also viewed as an essential component of the caring profession that prompts robust discussion and acts as an impetus for medical decision-making. CONCLUSIONS: Moral distress remains prevalent within NICUs. While the harmful aspects of moral distress need to be mitigated, moral distress may have a positive role in advocating for and promoting the interests of the neonatal population.
Prentice TM; Gillam L; Davis PG; Janvier A
Archives of Disease in Childhood Fetal & Neonatal Edition
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1136/archdischild-2017-313539" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-313539</a>
Pilot of a Pediatric Palliative Care Early Intervention Instrument
Current research demonstrates that pediatric symptom management care is often initiated in the late stages of disease once clinicians are no longer able to meaningfully impact symptom burden. Given that physicians or nurse practitioners are responsible for initiating palliative care referrals, it is incumbent upon registered nurses to advocate when improved symptom management care is needed. The pediatric palliative care screening instrument pilot provides a centralized instrument to document and quantify a patient's symptom profile, giving registered nurses the opportunity to objectively communicate and track a patient's need for improved symptom management care within the areas of pain, secretions, dyspnea, intractable seizures, nausea, vomiting, constipation, diarrhea, anorexia, cachexia, sleep disturbance, lethargy, anxiety, depression, and/or agitation. The 4-week quality improvement project at an academic teaching hospital formally incorporated the bedside registered nurses' symptom assessment into a centralized document. Fifty-three patients were identified as having an uncontrolled symptom burden in at least one of the symptom domains, indicating that excessive and untreated symptom burden was present on the acute care floor. The pediatric palliative care screening instrument could act as a conduit between bedside registered nurses and the palliative care team, serving to reduce the time between onset of excessive symptom burden and initiation of symptom management services.
Shaw R; Miller JG; Seegal H; Keim-Malpass J
Journal of Hospice & Palliative Nursing
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1097/NJH.0000000000000466" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000466</a>