If I could just chime in here': ”: Communication Patterns of Interprofessional Teams in the Pediatric Cardiac Intensive Care Unit
Purpose: To describe the communication of interdisciplinary teams in a pediatric cardiac intensive care unit (CICU) when developing care plans and preparing for family meetings because little is known about how interdisciplinary teams communicate with each other about care plan development in the CICU. Methods: Audio recordings were made of weekly CICU team meetings including representatives from all interdisciplinary care providers prior to meeting with a patient’s family. Quantitative case coding described percentage …
Walter J; Schall T; DeWitt A; Arnold R; Feudtner C
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.638" target="_blank" rel="noreferrer noopener">10.1542/peds.142.1_MeetingAbstract.638</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
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/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>
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
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<a href="http://doi.org/10.1186/s13643-018-0761-2" target="_blank" rel="noreferrer noopener">10.1186/s13643-018-0761-2</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>
Development and Implementation of a Survey to Assess Health-Care Provider's Competency, Attitudes, and Knowledge About Perinatal Palliative Care.
fetal anomaly; instrument development; neonatal palliative care; pediatric palliative care; perinatal hospice; perinatal palliative care
Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS). Twenty-four Canadian pediatric palliative care specialists critiqued the PPCS, establishing its face and content validity. Phase 2 involved administering the PPCS at 4 sites across Canada, resulting in 167 responses from nurses, physicians, and midwives. The majority of participants responded that they possessed a degree of comfort in providing perinatal palliative care, particularly with assessing pain (76%), managing pain (69%), assessing other symptoms (85%), and managing other symptoms (78%). Two areas where participants level of confidence or extreme confidence was diminished included having conversations with families about the possibility of their infant dying (55%) and knowing and accessing community palliative care resources (32%). Responses in the knowledge section identified gaps related to opioid use, pharmacological interventions for breathlessness, pain behaviors, and tolerance developed to opioids and sedatives. Eighty-six percent of respondents stated that if education about palliative care was made available, they would participate with priority topics identified as communication with families (75%), managing symptoms (69%), pain management (69%), and ethical issues (66%). The PPCS provides a useful assessment to determine the educational needs of health-care providers delivering perinatal palliative care.
Stenekes S; Penner JL; Harlos M; Proulx M; Shepherd E; Liben S; Thompson G; MacConnell G; Gregoire M; Siden Harold Hal
Journal of 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/10.1177/0825859718790627" target="_blank" rel="noreferrer noopener">10.1177/0825859718790627</a>
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
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<a href="http://doi.org/10.1186/s12887-018-1168-x" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1168-x</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
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<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>
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
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<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>
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
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<a href="http://doi.org/10.1177/1359104517730115" target="_blank" rel="noreferrer noopener">10.1177/1359104517730115</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
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<a href="http://doi.org/10.1136/archdischild-2017-314430" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314430</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>
Incorporating Bereaved Parents as Faculty Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care.
bereavement; communication training; end of life; palliative care education; pediatric oncology; pediatric palliative care
BACKGROUND: Education and training for interdisciplinary pediatric providers requires training in principles of palliative and end-of-life (EOL) care. The experiences of bereaved parents can inform and enhance palliative care educational curricula in uniquely powerful and valuable ways. The objective of this study is to present an innovative palliative care educational program facilitated by trained bereaved parents who serve as volunteer educators in local and national palliative care educational forums and to describe how incorporation of bereaved parents in these educational forums affects participant comfort with communication and management of children at the EOL. METHODS: Parent educators underwent both general and session-specific training and participated in debriefings following each session. Survey tools were developed or adapted to determine how bereaved parent educators affected participant experiences in 3 different educational forums. Pre- and postsession surveys with incorporation of retrospective preprogram assessment items to control for response shift were used in the evaluation of institutional seminars on pediatric palliative and EOL care and role-play-based communication training sessions. Results from feedback surveys sent to attendees were used to appraise the participants' experience at the international oncology symposium. RESULTS: Involvement of trained parent educators across diverse, interdisciplinary educational forums improved attendee comfort in communicating with, and caring for, patients and families with serious illness. Importantly, parent educators also derive benefit from involvement in educational sessions with interdisciplinary clinicians. CONCLUSIONS: Integration of bereaved parents into palliative and EOL care education is an innovative and effective model that benefits both interdisciplinary clinicians and bereaved parents.
Snaman JM; Kaye EC; Spraker-Perlman H; Levine D; Clark L; Wilcox R; Barnett B; Sykes April; Lu Z; Cunningham MJ; Baker JN
The American journal of hospice & 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/10.1177/1049909118786875" target="_blank" rel="noreferrer noopener">10.1177/1049909118786875</a>
Interprofessional Team Meetings in the Pediatric Cardiac Intensive Care Unit
Purpose: To evaluate communication behaviors and interprofessional team interactions during family meetings in the pediatric cardiac intensive care unit (CICU) because little is known about how interdisciplinary teams communicate with each other about care plan development in the CICU. Methods: Meetings of family members and CICU clinicians were audio recorded. We used quantitative case-coding to compare the duration of contributions made by attendees, …
Walter J; Sachs Emily; DeWitt A; Arnold R; Feudtner C
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.659" target="_blank" rel="noreferrer noopener">10.1542/peds.142.1_MeetingAbstract.659</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
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<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>
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>
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>
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
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<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>
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>
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>
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>
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>
Well-Child Visits of Medicaid-Insured Children with Medical Complexity
OBJECTIVE: Well-child visits (WCVs) help optimize children's health. We measured annual WCVs for children with medical complexity (CMC) and correlated WCVs with hospitalizations. STUDY DESIGN: This was a retrospective analysis of 93 121 CMC aged 1-18 years continuously enrolled in 10 state Medicaid programs in the Truven MarketScan Database between 2010 and 2014. CMC had a complex chronic condition or 3 or more chronic conditions of any complexity identified from International Classification of Diseases, Ninth Revision codes, and the use of 1 or more chronic medications. We measured the number of years with 1 or more WCVs. The χ2 test and logistic regression were used to assess the relationships of WCV-years with the children's characteristics and hospitalization. RESULTS: Over 5 years, 13.4% of CMC had 0 WCVs; 17.3% had WCVs in 1 year, 40.8% had WCVs in 2-3 years, and 28.5% had WCVs in 4-5 years. Fewer children received WCVs in 4-5 years when enrolled in Medicaid fee-for-service compared with managed care (20.9% vs 31.5%; P < .001) and when enrolled due to a disability compared with another reason (18.2% vs 32.2%; P < .001). The percentage of CMC hospitalized decreased as the number of years receiving WCV increased (21.5% at 0 years vs 16.9% at 5 years; P < .001). The adjusted odds of hospitalization were higher in CMC with WCVs in 0-4 years compared with CMC with WCVs in all 5 years (OR range across years, 1.1 [95% CI, 1.0-1.2] to 1.3 [95% CI, 1.3-1.4]). CONCLUSIONS: Most Medicaid-insured CMC do not receive annual WCVs consistently over time. Children with fewer annual WCVs have a higher likelihood of hospitalization. Further investigation is needed to improve the use of WCVs in CMC.
Shumskiy I; Richardson T; Brar S; Hall M; Cox J; Crofton C; Peltz A; Samuels-Kalow M; Alpern ER; Neuman Mark I; Berry Jay G
Journal of 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.jpeds.2018.04.003" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2018.04.003</a>