Validating the Rett Syndrome Gross Motor Scale
tone and motor problems; Rett syndrome; tool development; scale development; RSGMS
© 2016 Downs et al. Rett syndrome is a pervasive neurodevelopmental disorder associated with a pathogenic mutation on the MECP2 gene. Impaired movement is a fundamental component and the Rett Syndrome Gross Motor Scale was developed to measure gross motor abilities in this population. The current study investigated the validity and reliability of the Rett Syndrome Gross Motor Scale. Video data showing gross motor abilities supplemented with parent report data was collected for 255 girls and women registered with the Australian Rett Syndrome Database, and the factor structure and relationships between motor scores, age and genotype were investigated. Clinical assessment scores for 38 girls and women with Rett syndrome who attended the Danish Center for Rett Syndrome were used to assess consistency of measurement. Principal components analysis enabled the calculation of three factor scores: Sitting, Standing and Walking, and Challenge. Motor scores were poorer with increasing age and those with the p.Arg133Cys, p.Arg294* or p.Arg306Cys mutation achieved higher scores than those with a large deletion. The repeatability of clinical assessment was excellent (intraclass correlation coefficient for total score 0.99, 95% CI 0.930.98). The standard error of measurement for the total score was 2 points and we would be 95% confident that a change 4 points in the 45-point scale would be greater than within-subject measurement error. The Rett Syndrome Gross Motor Scale could be an appropriate measure of gross motor skills in clinical practice and clinical trials.
Downs J; Stahlhut M; Wong K; Syhler B; Bisgaard A; Jacoby P; Leonard H
PLoS ONE
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1371/journal.pone.0147555" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0147555</a>
Functional and gait assessment in children and adolescents affected by Friedreich's ataxia: A one-year longitudinal study
adolescent; reliability; preschool child; longitudinal study; human; article; child; female; male; controlled study; clinical article; walking; Friedreich's ataxia; functional assessment; gait; assessment of humans; Gait Analysis and the Scale for the Assessment and Rating of Ataxia; step length; stride length; walking velocity; tone and motor problems; trajectory; characteristics
Friedreich's ataxia is the most common autosomal recessive form of neurodegenerative ataxia. We present a longitudinal study on the gait pattern of children and adolescents affected by Friedreich's ataxia using Gait Analysis and the Scale for the Assessment and Rating of Ataxia (SARA). We assessed the spectrum of changes over 12 months of the gait characteristics and the relationship between clinical and instrumental evaluations. We enrolled 11 genetically confirmed patients affected by Friedreich's ataxia in this study together with 13 normally developing age-matched subjects. Eight patients completed a 12-month follow-up under the same protocol. By comparing the gait parameters of Friedreich's ataxia with the control group, we found significant differences for some relevant indexes. In particular, the increased knee and ankle extension in stance revealed a peculiar biomechanical pattern, which correlated reliably with SARA Total, Gait and Sitting scores. The knee pattern showed its consistency also at the follow-up: Knee extension increased from 6.8+/-3.5degree to -0.5+/-3.7degree and was significantly correlated with the SARA total score. This feature anticipated the loss of the locomotor function in two patients. In conclusion, our findings demonstrate that the selective and segmental analysis of kinetic/kinematic features of ataxic gait, in particular the behavior of the knee, provides sensitive measures to detect specific longitudinal and functional alterations, more than the SARA scale, which however has proved to be a reliable and practical assessment tool. Functional outcomes measures integrated by instrumental evaluation increase their sensitivity, reliability and suitability for the follow-up of the disease progression and for the application in clinical trials and in rehabilitative programs.
Vasco G; Gazzellini S; Petrarca M; Lispi M L; Pisano A; Zazza M; Bella G D; Castelli E; Bertini E
PLoS ONE
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1371/journal.pone.0162463" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0162463</a>
Children with life-shortening conditions are denied the support they need, says charity
Healthcare Financing; Palliative Care; Respite Care; Adolescent; Charities; Child; Child Preschool; England; Hospice And Palliative Care Nursing; Humans; Infant; Infant Newborn; State Medicine; Young Adult
Children who require palliative care are being 'short changed or ignored', according to a survey of services in England by the charity Together for Short Lives.
[No authors listed]
Nursing Children And Young People
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<span><span></span><span><a href="https://doi.org/10.7748/ncyp.28.7.7.s6">10.7748/ncyp.28.7.7.s6</a></span></span><span><span><br /></span></span>
Trainee Experience And Understanding In Paediatric Palliative Care
Aims Despite the growing number of children within the UK who suffer life-limiting or life-threatening conditions, there remain significant barriers to the timely integration of palliative care services for many patients. We sought to evaluate trainee understanding of what these services can offer, and their experiences of palliative care in their day-to-day clinical practice.
Methods An online survey was distributed to paediatric trainees across the UK. We analysed the responses using simple statistical methods as well as performing a qualitative analysis on free text responses.
Results 161 trainees completed the survey, of which 94% reported working with children who suffer life-limiting or life-threatening conditions. A significant proportion of trainees reported being unaware of some of the key roles of palliative care teams, such as supporting children who may later recover and be discharged from palliative care (Table 1). In addition, trainees report palliative care teams being poorly integrated within certain paediatric sub-specialty areas (Figure 1).
Abstract G512(P) Table 1
Abstract G512(P) Table 1
Trainee awareness of paediatric care services
Abstract G512(P) Figure 1
Abstract G512(P) Figure 1
Paediatric palliative care team involvement in sub-specialties
Whilst 98% of trainees reported they would involve palliative care if a child was expected to die soon, fewer acknowledged the need to refer children for whom curative treatment may be feasible but could fail (42%), or before the birth of a child with a fetal diagnosis of a life-threatening or life-limiting condition (65%). 63% of trainees reported being involved in the care of a child where they felt that quality-of-life priorities or the possibility of death were not being openly acknowledged or discussed.
Lack of knowledge about the services available, and concerns about parental perception of palliative care emerged as key barriers to making referrals. 93% of trainees said they would find it helpful to have more training in paediatric palliative care, either from local visits or more specific training.
Conclusion UK paediatric trainees report being unaware of the full remit of palliative care teams, and many describe experiences where these services are difficult to access in their clinical practice. This survey provides an insight into the perceived barriers to better integration of paediatric palliative care, and highlights an area in which both clinicians and their patients may benefit from more dedicated resources and training.
A Hutchinson; S Bertaud
Archives Of Disease In Childhood
2016
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http://dx.doi.org/10.1136/archdischild-2016-310863.499
Acknowledged Dependence And The Virtues Of Perinatal Hospice
Hospices (terminal Care); Social Aspects; Prenatal Care; Palliative Treatment
Acknowledged Dependence; Alasdair Macintyre; Life-limiting Conditions; Palliative Care; Perinatal Hospice; Prenatal Screening
Prenatal screening can lead to the detection and diagnosis of significantly life-limiting conditions affecting the unborn child. Recognizing the difficulties facing parents who decide to continue the pregnancy, some have proposed perinatal hospice as a new modality of care. Although the medical literature has begun to devote significant attention to these practices, systematic philosophical reflection on perinatal hospice has been relatively limited. Drawing on Alasdair MacIntyre’s account of the virtues of acknowledged dependence, I contend that perinatal hospice manifests and facilitates virtues essential to living well with human dependency and vulnerability. For this reason, perinatal hospice deserves broad support within society.
Aaron D Cobb
Journal Of Medicine & Philosophy
2016
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Temporal and spatial gait parameters in children with Cri du Chat Syndrome under single and dual task conditions
Children; Orthopedics; motor; Gait; Neurosciences & Neurology; walking; Sport Sciences; performance; concurrent task; Cri du Chat Syndrome; Dual-task; older-adults; parkinsons-disease; tone and motor problems; trajectory; characteristics
Aim: To describe temporal and spatial gait characteristics in individuals with Cri du Chat syndrome (CdCS) and to explore the effects of performing concurrent manual tasks while walking. Methods: The gait parameters of 14 participants with CdCS (mean age 10.3, range 3-20 years) and 14 age matched controls (mean age 10.1, range 3-20 years) were collected using the GAITRite (R) instrumented walkway. All participants first walked without any concurrent tasks and then performed 2 motor dual task walking conditions (pitcher and tray). Results: Individuals with CdCS took more frequent, smaller steps than controls, but, on average, had a comparable gait speed. In addition, there was a significant task by group interaction. Participants decreased gait speed, decreased cadence, decreased step length, and increased% time in double limb support under dual task conditions compared to single task conditions. However, the age-matched controls altered their gait for both manual tasks, and the participants with CdCS only altered their gait for the tray task. Interpretation: Although individuals with CdCS ambulate with a comparable gait speed to age-matched controls under single task conditions, they did not significantly alter their gait when carrying a pitcher with a cup of water inside, like controls. It is not clear whether or not individuals with CdCS had difficulty attending to task demands or had difficulty modifying their gait. (C) 2016 Elsevier B.V. All rights reserved.
Abbruzzese L D; Salazar R; Aubuchon M; Rao A K
Gait & Posture
2016
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<a href="http://doi.org/10.1016/j.gaitpost.2016.08.006" target="_blank" rel="noreferrer noopener">10.1016/j.gaitpost.2016.08.006</a>
Lower Urinary Tract Symptoms and Incontinence in Children with Pompe Disease
constipation; urinary incontinence; glycogen storage disease type II; trajectory; characteristics
BACKGROUND: Pompe disease (PD) is a disorder of lysosomal glycogen storage. The introduction of enzyme replacement therapy (ERT) has shifted the focus of care from survival to quality of life. The presence of lower urinary tract symptoms (LUTS) and incontinence has not been previously described in children with PD. METHODS: Children with PD followed in the Duke Lysosomal Storage Disease Clinic completed a validated bladder control symptom score (BCSS) and additional questions regarding urinary tract infections (UTIs), giggle, and stress incontinence. Descriptive statistics were used to discriminate urinary symptoms between gender, age, and different types of PD. RESULTS: Sixteen of 23 children (aged 4-14 years) seen in our clinic participated. Seven were girls; ten had classic infantile PD, two atypical infantile PD, and four childhood presentation late-onset PD (LOPD). When stratified by PD subtype, median BCSS was worst for the classic PD subtype followed by atypical PD and LOPD. Daytime urinary incontinence accompanied by constipation was noted in six. Eight reported urinary incontinence with laughing: giggle incontinence in six and stress incontinence in two. Four girls reported a history of UTI. Longitudinal follow-up in 11 patients showed stable BCSS in six, improvement in three, and worsening in two. Worsening corresponded with changes in bowel function and improvement with increase in ERT dose or treatment of constipation. CONCLUSIONS: LUTS and incontinence are common in children with PD with greater symptoms noted with infantile-type PD. Improved bowel function and increase in ERT dose may lead to improvements in BCSS.
Ajay D; McNamara E R; Austin S; Wiener J S; Kishnani P
JIMD Reports
2016
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<a href="http://doi.org/10.1007/8904_2015_492" target="_blank" rel="noreferrer noopener">10.1007/8904_2015_492</a>
A Comparison Of Continuing Bonds Over Time In Bereaved Parents And Siblings After The Death Of A Child
Objectives * Compare purposeful and non-purposeful continuing bonds between one and two years post-death. * Compare comforting and discomforting effects of continuing bonds between one and two years post-death. Original Research Background. Continuing bonds refer to bereaved individuals maintaining connections with the deceased. Continuing bonds have been described as a coping strategy for bereaved individuals, but few studies have compared similarities and differences in how bonds evolve over time. Research Objectives. This study compared reports of continuing bonds from bereaved parents and siblings at one (T1) and two (T2) years after the death of a child to cancer. Methods. Twenty-six families participated in both years of the study. Participants included mothers (n = 21), fathers (n =15), and siblings (n = 25). Semi-structured home interviews using open-ended questions were conducted with parents and siblings separately. Content analysis identified emerging themes and included counts and frequencies of participant responses. McNemar tests examined differences in the frequency of responses between T1 and T2 data. Results. Similar to participants' reports at one year post-death, themes emerging from participants' reports at two years post-death included purposeful (e.g., visual representations of the deceased, visiting the cemetery, communicating to the deceased) and non-purposeful (e.g., dreams about the deceased, visits/signs from the deceased) continuing bonds and comforting and discomforting effects. Frequency reports of each category at T1 and T2 will be presented. Comparisons between T1 and T2 data were not statistically significant. Conclusion. Reports of continuing bonds from bereaved parents and siblings after the death of a child are similar at one and two years post-death. Continuing bonds may be a long-term coping strategy used by bereaved individuals. Implications for Research, Policy or Practice. Providers should be mindful to assess continuing bonds with bereaved families and aware that effects can be both comforting and discomforting. More research is needed to determine how to facilitate positive effects from continuing bonds and whether interventions to promote bonds could be helpful.
Akard T F; Dietrich M; Baudino M; Stone A
Journal Of Pain And Symptom Management
2016
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The Outcome of Critically Ill Pediatric Cancer Patients Admitted to the Pediatric Intensive Care Unit in a Tertiary University Oncology Center in a Developing Country: A 5-Year Experience
Developing Countries; Intensive Care Units; Academic Medical Centers; Adolescent; Cancer Care Facilities; Child; Critical Illness; Female; Hematologic Neoplasms/complications/ Mortality/therapy; Humans; Infant; Male; Multiple Organ Failure/etiology; Pediatric; Preschool; Prognosis; Respiratory Insufficiency/etiology; Retrospective Studies; Sepsis/etiology; Tertiary Care Centers; Treatment Outcome
INTRODUCTION: Cancer remains a major cause of death in children, but recent advances in supportive care and progress in the use of chemotherapy have considerably improved the prognosis. The need for intensive care management in pediatric oncology patients is increasing. However, studies demonstrating their outcome in the literature are still deficient, especially in developing countries. Here, we aim to report our experience in managing patients admitted to the pediatric intensive care unit (PICU) at South Egypt Cancer Institute, a tertiary university oncology center in a developing country. PATIENTS AND METHODS: A review of all cancer patients admitted to the PICU at South Egypt Cancer Institute between January 2007 and December 2011 and an evaluation of prognostic factors that may correlate to their short-term outcome were performed. RESULTS: A total of 550 pediatric oncology patients were admitted to the PICU on 757 occasions. Hematological malignancies represented 73.6% of the cases. The median duration of PICU stay was 5 days. Sepsis and respiratory failure were the most frequent indications for PICU admission. The overall survival at the time of discharge from the PICU was 60%. Several factors were found to significantly affect the outcome of patients admitted to the PICU, including the underlying disease, the reason for admission, the intervention used, and the number of failing organs at the time of admission to the PICU. CONCLUSIONS: The prognosis of patients admitted to the PICU in developing countries is still behind those in developed ones. Late referral, especially of patients presenting with respiratory failure, sepsis, and multiorgan failure usually, requires urgent intervention with inotropic support, oxygen therapy, and mechanical ventilation and is significantly associated with poor outcomes, especially in patients with hematological malignancies.
Ali AM; Sayed HA; Mohammed MM
Journal Of Pediatric Hematology/oncology
2016
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<a href="http://doi.org/10.1097/mph.0000000000000523" target="_blank" rel="noreferrer">10.1097/mph.0000000000000523</a>
Hospitalization Outcomes In Children With End Of-life Care Measures
General & Internal Medicine
Learning Objectives: Care at end of life in adults is known to account for a large proportion of health care resources. Current national estimates of outcomes in hospitalized children with end of life care are unknown. Using a large nationwide sample, we sought to characterize outcomes in hospitalized children who received end of life care measures. Methods: We performed a retrospective analysis of the Nationwide Inpatient Sample for years 2012 and 2013. All patients aged up to 17 years who had End of Life Care (ELC) treatment in the hospital were selected. Demographic characteristics of this cohort were examined. Outcomes examined included: hospitalization charges (HC), length of stay (LOS), and disposition status. Results: During the study period, a total of 9,785 children had ELC in hospitals. The mean age of this cohort was 4 years. Males comprised 53% of patients. Whites (49.8%) were the most frequently reported race followed by Hispanics(21.8%), Blacks(16.8%), Asians/Pacific Islanders (3.8%), Native Americans (1.3%), and other races (6.5%). 90% of this cohort was admitted on an emergency/urgent basis. The major diagnostic categories to which the patients belonged to included: Newborns/Neonates with conditions originating in perinatal period (37.8%), diseases of nervous system (14%), diseases of respiratory system (13.4%), myeloproliferative diseases/poorly differentiated neoplasms(5.7%), and disease of circulatory system(5.6%). Medicaid(53.3%) and private insurance plans(35.8%) were predominating payers. 24.3% were discharged routinely, 1.9% were transferred to another hospital, 4.4% were discharged to long term care facilities, 17.8% were discharged to home health care, and 51.4% died during hospitalization. The mean LOS in hospital was 14.4days and the total hospitalization days across the entire USA was 141,065 days. The mean HC was $183,202 and the total HC across the entire USA for this cohort of patients receiving ELC was $1.7 Billion. Conclusions: End of life care in hospitalized children accounts for considerable resource utilization. Strategies to optimize care, costs and quality at end of life are needed.
Allareddy V; Rampa S; Nalliah R; Lee MK
Critical Care Medicine
2016
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DOI: <a href="http://journals.lww.com/ccmjournal/Citation/2016/12001/546___HOSPITALIZATION_OUTCOMES_IN_CHILDREN_WITH.509.aspx" target="_blank" rel="noreferrer">10.1097/01.ccm.0000509224.58519.30</a>
Consistency in end of life care
Adolescent; Child; Child Preschool; Communication; Decision Making; Hospice And Palliative Care Nursing/ Standards; Humans; Infant; Nurse-patient Relations; Patient Participation; Pediatric Nursing/ Standards; Practice Guidelines As Topic
Draft guidelines address regional variations, but there are worries over terminology, the needs of family members and implementation. The death of a child is a comparatively rare event in the UK. Even so, more than 3,000 infant and 2,000 children and young people age 1-19 years died in England and Wales in 2012.
Allen D
Nursing Children And Young People
2016
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<a href="http://journals.rcni.com/doi/full/10.7748/ncyp.28.8.8.s8" target="_blank" rel="noreferrer">10.7748/ncyp.28.8.8.s8</a>
Metronomics during palliative care in paediatric oncology? For sure! But handle me with care
Administration; Neoplasms/dt [drug Therapy]; Child; Humans; Metronomic; Palliative Care/mt [methods]
Andre N; Pasquier E
Acta Paediatrica
2016
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<a href="http://doi.org/10.1111/apa.13365" target="_blank" rel="noreferrer">10.1111/apa.13365</a>
Can Parents Refuse A Potentially Lifesaving Transplant For Severe Combined Immunodeficiency?
Pediatrics; Life-saving Apparatus; Severe Combined Immunodeficiency; Research; Parents; Analysis; Methods
If untreated, most children with severe combined immunodeficiency disorder (SCID) will die of complications of infection within the first 2 years of life. Early hematopoietic stem cell transplant (HSCT) is the current standard of care for this disease. Although potentially lifesaving, prognosis of HSCT in SCID is variable depending on a number of host and donor factors. Of the survivors, many develop secondary problems such as chronic graft-versus-host disease or even second malignancies. Posttransplant care is complex and requires great effort from parents to adhere to difficult treatment regimens. In this article, we address the difficult ethical question of what to do if parents choose not to have their child with SCID undergo HSCT but prefer palliative care.
Andrew S Nickels; G Douglas Myers; Liza-Marie Johnson; Avni Joshi; Richard R Sharp; Lantos J
Pediatrics
2016
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The Role Of The Emergency Department In Pediatric Palliative Care
Objective: To explore pediatric emergency medicine
healthcare providers’ perspectives regarding their
role in pediatric palliative care.
Methodology: A qualitative study was conducted at the
CHU Sainte-Justine from January to April 2016. Four
interdisciplinary semi-structured focus groups were
held: three involved pediatric emergency medicine
staff and one interviewed the pediatrics palliative
care team. These focus groups were transcribed and
analysed in full using NVivo v. 21 (QSR International
Inc.) to identify nodes and codes, and facilitate the
emergence of themes. Data analysis borrows concepts
from grounded theory by using thematic analysis and
theoretical sampling.
Results: A first group involving 8 pediatric emergency
medicine staff members raised several limitations to
providing pediatric palliative care in the emergency
department (ED). These limitations included the unsuitable
physical environment, constrained time and
resources, lack of knowledge about the patient and
his underlying medical condition, difficulties communicating,
with both the patient’s primary physicians
and the patient’s parents, and deficient training. ED
staff suggested their role included evaluating the
clinical situation, listening to the patient and his family,
trying to establish a trusting relationship, supporting
the patient and his family, and organising a rapid
admission to the ward. Disagreements were encountered
about two different approaches in palliative
care. Some healthcare providers believed a designated
and specialised team should manage all patients in pediatric
palliative care. Others suggested a transversal
approach, in which all healthcare providers have a
role to play in the care of pediatric palliative care
patients.
Conclusion: Several limitations and barriers have been
identified to providing high quality pediatric palliative
care in a pediatric ED. The ED’s role in caring for
these patients remains controversial, and demonstrates
two distinct philosophies for providing pediatric
palliative care.
Anne-Josée Côté; Nathalie Gaucher; Antoine Payot
Journal Of Pain And Symptom Management
2016
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DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.110
Measuring And Communicating Meaningful Outcomes In Neonatology: A Family Perspective
Parents; Neurodevelopmental Outcomes; Child; Composite End-points; Birth; Down-syndrome; Obstetrics & Gynecology; Extremely Preterm Infants; Of-life Decisions; Pediatrics; Gestational Age
Extreme Prematurity; Congenital Anomalies; Neonatal Intensive Care Unit; Life-sustaining Interventions; End-of-life Decision Making; Disability; Screening; Palliative Care; Family-centered Care; Communication; Empathy
Abstract
Medium- and long-term outcomes have been collected and described among survivors of neonatal intensive care units for decades, for a number of purposes: (1) quality control within units, (2) comparisons of outcomes between NICUs, (3) clinical trials (whether an intervention improves outcomes), (4) end-of-life decision-making, (5) to better understand the effects of neonatal conditions and/or interventions on organs and/or long-term health, and finally (6) to better prepare parents for the future. However, the outcomes evaluated have been selected by investigators, based on feasibility, availability, cost, stability, and on what investigators consider to be important. Many of the routinely measured outcomes have major limitations: they may not correlate well with long-term difficulties, they may artificially divide continuous outcomes into dichotomous ones, and may have no clear relationship with quality of life and functioning of children and their families. Several investigations, such as routine term cerebral resonance imaging for preterm infants, have also not yet been shown to improve the outcome of children nor their families. In this article, the most common variables used in neonatology as well as some variables which are rarely measured but may be of equal importance for families are presented. The manner in which these outcomes are communicated to families will be examined, as well as recommendations to optimize communication with parents.
Abbreviations
BPD, bronchopulmonary dysplasia; BSID, Bayley Scales of Infant Development; GA, gestational age; NDI, neurodevelopmental impairment; NICU, neonatal intensive care unit; ROP, retinopathy of prematurity
Keywords
Extreme prematurity; Congenital anomalies; Neonatal intensive care unit; Life-sustaining interventions; End-of-life decisions; Disability; Screening; Palliative care; Family-centered care; Communication; Empathy
Annie Janviera; Barbara Farlow; Jason Baardsnesf; Rebecca Pearceg; Keith J Barringtona
Seminars In Perinatology
2016
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http://dx.doi.org/10.1053/j.semperi.2016.09.009
Improvements In Communication And Relationship Building Are Essential
Communication; Nurse-patient Relations; Palliative Care/st [standards]; Pediatric Nursing/mt [methods]; Pediatric Nursing/st [standards]; Humans
Understanding research priorities in children's palliative care is important for nurses, following the phasing out of the Liverpool Care Pathway, which has led to a change in palliative and end of life care ( Department of Health (DH) 2014 ). Advances in technology that can keep children alive for a long time is another area over which there is much debate ( Longden and Mayer 2007 ).
Anonymous
Nursing Children And Young People
2016
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10.7748/ncyp.28.4.13.s17
Legal and ethical issues in neonatal nursing
gestational age; newborn nursing; Human; Male; Neonatal Intensive Care Unit; neonatal nurse; Newborn; prematurity; Prognosis
Neonatal nurses regularly face complex legal and ethical dilemmas. This article discusses the hypothetical case of Jack, a two-day-old infant, born at 39 weeks' gestation, and diagnosed with trisomy 13 (syndrome), a life-limiting condition and being cared for in a neonatal intensive care unit. Jack's prognosis is poor and he is not expected to live past two weeks of age.
Anonymous
Nursing Children And Young People
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.7748/ncyp.28.7.51.s26" target="_blank" rel="noreferrer">10.7748/ncyp.28.7.51.s26</a>
Tensions At The End Of Life In Pediatrics: Actors, Causes, Coping Strategies And Remedies
Background: The majority of children die in pediatric
hospitals after a decision to withhold or withdraw
life sustaining interventions. Tensions and conflicts
at the end of life (EOL) are not rare in pediatric
hospitals.
Objective: To investigate how frequent these conflicts
are and how health-care professionals (HCPs) experience,
cope and suggest improvements regarding endof-life
communications in pediatrics.
Design/Methods: Questionnaire sent to all 2300 HCPs
who care for patients in a large mother-child university
hospital.
Results: 946 HCPs answered the questionnaire (nurses,
physicians and other disciplines). A majority (70%,
663) had witnessed or cared for at least one dying child
over the preceding five years. Of those, 73% experienced
at least a conflict at the end of life. Conflict
occurred more frequently among HCPs (58%) than between
HCPs and parents (33%), p LT 0.05.
More than 40% reported the following factors as being
frequently associated with end-of-life conflicts:
- HCP Related: lack of continuity (physicians and/
or nurses), differences in values and beliefs between
HCP.
- Patient-Disease Related: precipitated or critical situations,
uncertain prognosis.
- Parent Related: unprepared parents, emotional load,
unrealistic parental expectations, differences in
values and beliefs, parents’ fear of hastening death.
- Institution Related: lack of practical guidelines to
deal with difficult end-of-life cases.
HCP report using these strategies to solve confrontations:
negotiating with parents and patients, educating
parents and discussing with peers. Nurses and physicians
reported significantly different types of coping strategies.
For 66% of respondents, conflicts were resolved
by the time of the child’s death. Only 25% felt they
received adequate training to cope with EOL conflicts.
Suggestions for improvement: primary health-care providers
or case-managers, interdisciplinary meetings
involving the parents, post-death ethics meetings,
bereavement follow-up protocols and earlier consultation
in pediatric palliative care and/or clinical ethics service.
Conclusions: End-of-life conflicts are frequent in pediatrics.
The main source of tension is between providers
who may have different views and values. Coping mechanisms
may be different from one provider to another,
but many identify useful strategies to solve conflicts.
Future research should investigate whether these perspectives
parallel those of parents and patients.
Antoine Payot; Marie-Anne Archambault-Grenier; Marie-Hélène Roy-Gagnon; Nago H; Sanja Stojanovic; Janvier A; Michel Duval
Journal Of Pain And Symptom Management
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.023
Religion And Spiritual Care In Pediatric Intensive Care Unit: Parental Attitudes Regarding Physician Spiritual And Religious Inquiry
Decision-making; Pediatric Intensive Care Unit; Religious Belief; Spiritual Care; Spiritual History
OBJECTIVE: Parents of seriously ill children require attention to their spiritual needs, especially during end-of-life care. The objective of this study was to characterize parental attitudes regarding physician inquiry into their belief system. MATERIALS AND MAIN RESULTS: A total of 162 surveys from parents of children hospitalized for >48 hours in pediatric intensive care unit in a tertiary academic medical center were analyzed. Forty-nine percent of all respondents and 62% of those who identified themselves as moderate to very spiritual or religious stated that their beliefs influenced the decisions they made about their child's medical care. Although 34% of all respondents would like their physician to ask about their spiritual or religious beliefs, 48% would desire such enquiry if their child was seriously ill. Those who identified themselves as moderate to very spiritual or religious were most likely to welcome the discussion (P < .001). Two-thirds of the respondents would feel comforted to know that their child's physician prayed for their child. One-third of all respondents would feel very comfortable discussing their beliefs with a physician, whereas 62% would feel very comfortable having such discussions with a chaplain. CONCLUSION: The study findings suggest parental ambivalence when it comes to discussing their spiritual or religious beliefs with their child's physicians. Given that improved understanding of parental spiritual and religious beliefs may be important in the decision-making process, incorporation of the expertise of professional spiritual care providers may provide the optimal context for enhanced parent-physician collaboration in the care of the critically ill child.
Arutyunyan T; Odetola F; Swieringa R; Niedner M
American Journal Of Hospice And Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1177/1049909116682016
Palliative Care. Workforce Development
Clinical Competence; education; Hospice and Palliative Care Nursing/ed [Education]; Hospice and Palliative Care Nursing/ma [Manpower]; Australia; continuing; Humans; nursing
Palliative care is delivered in almost all settings where healthcare is provided, including neonatal units, paediatric services, acute hospitals, general practices, community settings and aged care services. People who are dying have needs which require that nurses are able to deliver high quality evidence based and compassionate care no matter what their setting of practice.
2016
Ash K; Yates P
Australian Nursing & Midwifery Journal
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
"His ears are so soft!" Animal-assisted interventions in oncology settings: Implications for oncology social work practice
Clinical Practice; Ear; Oncology; Skill; Social Work Practice; 50-56-6 (oxytocin); 51-61-6 (dopamine); 62-31-7 (dopamine); 54577-94-5 (oxytocin); 60118-07-2 (endorphin); Adult; Animal Experiment; Animal Model; Anxiety; Blood Pressure; Cancer Patient; Cancer Therapy; Cerebrovascular Accident; Distress Syndrome; Dog; Dopamine; Endogenous Compound; Endorphin; Family Study; Female; Gene Expression; Happiness; Heart Rate; Hospice; Hospital Patient; Human; Human Versus Animal Comparison; Infusion; Male; Narrative; Nonhuman; Oxytocin; Pain; Palliative Therapy; Pet Therapy; Program Development; Recreation; Social Support; Storytelling; Symptom; Total Quality Management; Trust; Volunteer; Waiting Room
Content: The use of recreational, expressive, and integrative methods of providing supportive care to patients and families coping with cancer is growing in cancer treatment settings. One such method is animal-assisted interventions (AAI). From the clinic to the infusion suite, to the palliative care office, and to the inpatient hospice, the presence of therapy animals provides an another layer of therapeutic intervention to assist in coping with cancer. AAI can provide cancer patients with an opportunity for emotional support, diversion, recreation, sensory integration/tactile benefit, social support, companionship, and relief of distress and symptoms including pain, depression, anxiety, and isolation. Research also suggests that the simple act of petting a dog can lower heart rate and blood pressure (Friedman, 2015), as well as increase levels of oxytocin, dopamine, and endorphins (Uyemura, 2013). Oxytocin influences happiness and trust in individuals. "Oxytocin has some powerful effects for us in the body's ability to be in a state of readiness to heal.so it predisposes us to an environment in our bodies where we can be healthier" (http://www.npr.org/sections/health-shots/2012/03/09/146583986/ pet-therapy-how-animals-and-humans-heal-each-other). In addition, the therapy animal serves as a vehicle of communication, narrative, and storytelling. Imagine a patient sitting anxiously in the waiting room. He or she strokes the therapy dog gently and is taken to another time and place without cancer. He or she reflects on his or her own dog's roles in his or her life, how he or she rescued the dog, plays with the dog, sleeps with the dog. He or she is distracted, relaxed, and utilizing his or her own story to invoke feelings of happiness, normalcy, and hope. This presentation will examine the history, function, and roles of animal-assisted therapy and activities in various settings. The benefits of AAI with cancer patients (both adults and children) as well as with oncology professionals will also be presented. AAI as a method of integrative supportive oncology therapy will be addressed. The benefits of AAI as well as barriers and limitations for these programs in oncology settings will be reviewed. We will explore AAI program development and evaluation through presentation of results from quality improvement surveys completed by program participants. Suggestions for program development, volunteer recruitment and retention, and therapy dog support will also be discussed. Case presentations of AAI in action from various oncology settings will be a highlight of this presentation.
Bach C
Journal Of Psychosocial Oncology
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/07347332.2016.1147913" target="_blank" rel="noreferrer">10.1080/07347332.2016.1147913</a>
"It's not about treatment, it's how to improve your life": The lived experience of occupational therapy in palliative care
Professional-patient Relationship; Psychology; Adolescent; Adult; Aged; Australia; Female; Human; Male; Middle Aged; Occupational Therapy; Palliative Therapy; Procedures; Qualitative Research; Quality Of Life; Standards; Very Elderly
OBJECTIVES: A key aim of palliative care is to improve the quality-of-life of people with a life-threatening illness. Occupational therapists are well positioned to contribute to this aim due to their broad range of interventions, client-centeredness and focus on occupation. However, there is a limited understanding of how occupational therapy contributes to the end-of-life experience, which is crucial to providing optimal care. The aim of this study is to investigate the lived experience of occupational therapy in palliative care for people with a life-threatening illness. METHOD: A hermeneutic interpretive phenomenological approach was adopted. Semi-structured interviews were conducted with eight participants recruited from inpatient and outpatient sectors of a specialist palliative care hospital in Sydney, Australia. RESULTS: The two themes developed from participant responses were: (1) occupational therapy provides comfort and safety and (2) trusting the occupational therapist to know what is needed. SIGNIFICANCE OF RESULTS: This study gives insight into the ways in which people with a life-threatening illness experience occupational therapy in palliative care. In addition, it provides a starting point to guide practice that is attentive to the needs of people with a life-threatening illness at end-of-life, thus enhancing client-centered care.
Badger S; Macleod R; Honey A
Palliative & Supportive Care
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/S1478951515000826" target="_blank" rel="noreferrer">10.1017/S1478951515000826</a>
Retrospective cross-sectional review of survival rates in critically ill children admitted to a combined paediatric/neonatal intensive care unit in Johannesburg, South Africa, 2013-2015
Intensive Care Units Neonatal; Birth Weight; cause of death; Child; Critical Illness/ mortality; Cross-Sectional Studies; Female; Health services administration & management; Hospitalization/ statistics & numerical data; Humans; infant; Infant Newborn; Infant Newborn Diseases/ mortality; Infant Very Low Birth Weight; Male; Neonatology; Patient Discharge/ statistics & numerical data; Population Surveillance; retrospective studies; Risk Factors; South Africa/epidemiology; Survival Rate/ trends
OBJECTIVE: Report on survival to discharge of children in a combined paediatric/neonatal intensive care unit (PNICU). DESIGN AND SETTING: Retrospective cross-sectional record review. PARTICIPANTS: All children (medical and surgical patients) admitted to PNICU between 1 January 2013 and 30 June 2015. OUTCOME MEASURES: Primary outcome-survival to discharge. Secondary outcomes-disease profiles and predictors of mortality in different age categories. RESULTS: There were 1454 admissions, 182 missing records, leaving 1272 admissions for review. Overall mortality rate was 25.7% (327/1272). Mortality rate was 41.4% (121/292) (95% CI 35.8% to 47.1%) for very low birthweight (VLBW) babies, 26.6% (120/451) (95% CI 22.5% to 30.5%) for bigger babies and 16.2% (86/529) (95% CI 13.1% to 19.3%) for paediatric patients. Risk factors for a reduced chance of survival to discharge in paediatric patients included postcardiac arrest (OR 0.21, 95% CI 0.09 to 0.49), inotropic support (OR 0.085, 95% CI 0.04 to 0.17), hypernatraemia (OR 0.16, 95% CI 0.04 to 0.6), bacterial sepsis (OR 0.32, 95% CI 0.16 to 0.65) and lower respiratory tract infection (OR 0.54, 95% CI 0.30 to 0.97). Major birth defects (OR 0.44, 95% CI 0.26 to 0.74), persistent pulmonary hypertension of the new born (OR 0.44, 95% CI 0.21 to 0.91), metabolic acidosis (OR 0.23, 95% CI 0.12 to 0.74), inotropic support (OR 0.23, 95% CI 0.12 to 0.45) and congenital heart defects (OR 0.29, 95% CI 0.13 to 0.62) predicted decreased survival in bigger babies. Birth weight (OR 0.997, 95% CI 0.995 to 0.999), birth outside the hospital (OR 0.21, 95% CI 0.05 to 0.84), HIV exposure (OR 0.54, 95% CI 0.30 to 0.99), resuscitation at birth (OR 0.49, 95% CI 0.25 to 0.94), metabolic acidosis (OR 0.25, 95% CI 0.10 to 0.60) and necrotising enterocolitis (OR 0.23, 95% CI 0.12 to 0.46) predicted poor survival in VLBW babies. CONCLUSIONS: Ongoing mortality review is essential to improve provision of paediatric critical care.
Ballot DE; Davies VA; Cooper PA; Chirwa T; Argent A; Mer M
Bmj Open
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjopen-2015-010850" target="_blank" rel="noreferrer">10.1136/bmjopen-2015-010850</a>
Storytelling In The Early Bereavement Period To Reduce Emotional Distress Among Surrogates Involved In A Decision To Limit Life Support In The Icu: A Pilot Feasibility Trial
Posttraumatic-stress-disorder; Bereavement; Scale; Posttraumatic-stress-disorder; Depression; Surrogate Decision Making; Intensive-care-unit; Critical Care Medicine; Critically-ill; Terminal Care; Family-members; End; Critical Illness; Self-regulation; Intensive Care; Complicated Grief
OBJECTIVES:
Surrogate decision makers involved in decisions to limit life support for an incapacitated patient in the ICU have high rates of adverse emotional health outcomes distinct from normal processes of grief and bereavement. Narrative self-disclosure (storytelling) reduces emotional distress after other traumatic experiences. We sought to assess the feasibility, acceptability, and tolerability of storytelling among bereaved surrogates involved in a decision to limit life support in the ICU.
DESIGN:
Pilot single-blind trial.
SETTING:
Five ICUs across three hospitals within a single health system between June 2013 and November 2014.
SUBJECTS:
Bereaved surrogates of ICU patients.
INTERVENTIONS:
Storytelling and control conditions involved printed bereavement materials and follow-up assessments. Storytelling involved a single 1- to 2-hour home or telephone visit by a trained interventionist who elicited the surrogate's story.
MEASUREMENTS AND MAIN RESULTS:
The primary outcomes were feasibility (rates of enrollment, intervention receipt, 3- and 6-mo follow-up), acceptability (closed and open-ended end-of-study feedback at 6 mo), and tolerability (acute mental health services referral). Of 53 eligible surrogates, 32 (60%) consented to treatment allocation. Surrogates' mean age was 55.5 (SD, 11.8), and they were making decisions for their parent (47%), spouse (28%), sibling (13%), child (3%), or other relation (8%). We allocated 14 to control and 18 to storytelling, 17 of 18 (94%) received storytelling, 14 of 14 (100%) and 13 of 14 (94%) control subjects and 16 of 18 (89%) and 17 of 18 (94%) storytelling subjects completed their 3- and 6-month telephone assessments. At 6 months, nine of 13 control participants (69%) and 16 of 17 storytelling subjects (94%) reported feeling "better" or "much better," and none felt "much worse." One control subject (8%) and one storytelling subject (6%) said that the study was burdensome, and one control subject (8%) wished they had not participated. No subjects required acute mental health services referral.
CONCLUSION:
A clinical trial of storytelling in this study population is feasible, acceptable, and tolerable.
Barnato AE; Schenker Y; Tiver G; Dew MA; Arnold RM; Nunez ER; Reynolds CF
Critical Care Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1097/CCM.0000000000002009
Pediatric Palliative Care Pilot Curriculum: Impact Of "pain Cards" On Resident Education
Adult; Communication; Curriculum; Female; Health Knowledge Attitudes Practice; Hospitals Pediatric/organization & Administration; Humans; Internship And Residency/methods; Male; Pain Management; Pain Measurement; Palliative Care; Pediatrics/education; Pilot Projects
Palliative Care Curriculum; Palliative Care Education; Pediatric Palliative Care; Pediatric resident; Pocket cards; Resident education
BACKGROUND:
Prior research has shown that less than 40% of pediatric program directors believe their graduating residents competent in palliative care. While many curricula have been developed to address this need, few have demonstrated improved comfort and/or knowledge with palliative care principles. The purpose of this study was to test a pocket card educational intervention regarding resident knowledge and comfort with palliative care principles.
METHODS:
Pocket reference cards were created to deliver fundamentals of pediatric palliative care to resident learners; didactics and case studies emphasized principles on the cards. Self-reported comfort and objective knowledge were measured before and after the curriculum among residents.
RESULTS:
Of 32 post-graduate year 2 (PGY2) residents, 23 (72%) completed the pre-test survey. The post-test was completed by 14 PGY2 residents (44%) and 16 of 39 PGY3/4 residents (41%). There was improvement in comfort with communication, as well as pain and symptom management among the residents. Knowledge of palliative care principles improved in part, with only a few survey questions reaching statistical significance. 100% of respondents recommended the cards be provided to their colleagues.
CONCLUSION:
This longitudinal curriculum, designed specifically for pediatric residents, was built into an existing training program and proved to be popular, feasible, and effective at improving comfort with basic palliative care principles.
Barnett MD; Maurer SH; Wood GJ
American Journal Of Hospice And Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1177/1049909115590965
Physician Communication In Pediatric End-of-life Care: A Simulation Study
2016; End-of-life Communication; Palliative Care; Pediatric End-of-life Care; Pediatrics; Physician–parent Communication; Qualitative Methods; Simulation; Therapeutic Processes
Objective: The objective of this exploratory study is to describe communication between physicians and the actor parent of a standardized 8-year-old patient in respiratory distress who was nearing the end of life. Methods: Thirteen pediatric emergency medicine and pediatric critical care fellows and attendings participated in a high-fidelity simulation to assess physician communication with an actor-parent. Results: Fifteen percent of the participants decided not to initiate life-sustaining technology (intubation), and 23% of participants offered alternatives to life-sustaining care, such as comfort measures. Although 92% of the participants initiated an end-of-life conversation, the quality of that discussion varied widely. Conclusion: Findings indicate that effective physician–parent communication may not consistently occur in cases involving the treatment of pediatric patients at the end of life in emergency and critical care units. Practice Implications: The findings in this study, particularly that physician–parent end-of-life communication is often unclear and that alternatives to life-sustaining technology are often not offered, suggest that physicians need more training in both communication and end-of-life care. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Bateman LB; Tofil Nancy M; White Marjorie Lee; Dure Leon S; Clair Jeffrey Michael; Needham Belinda L
American Journal Of Hospice And Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1177/1049909115595022
A Qualitative Examination Of Physician Gender And Parental Status In Pediatric End-of-life Communication
In this study we utilized the framework of patient-centered communication to explore the influence of physician gender and physician parental status on (1) physician-parent communication and (2) care of pediatric patients at the end of life (EOL). The findings presented here emerged from a larger qualitative study that explored physician narratives surrounding pediatric EOL communication. The current study includes 17 pediatric critical care and pediatric emergency medicine physician participants who completed narrative interviews between March and October 2012 to discuss how their backgrounds influenced their approaches to pediatric EOL communication. Between April and June of 2013, participants completed a second round of narrative interviews to discuss topics generated out of the first round of interviews. We used grounded theory to inform the design and analysis of the study. Findings indicated that physician gender is related to pediatric EOL communication and care in two primary ways: (1) the level of physician emotional distress and (2) the way physicians perceive the influence of gender on communication. Additionally, parental status emerged as an important theme as it related to EOL decision-making and communication, emotional distress, and empathy. Although physicians reported experiencing more emotional distress related to interacting with patients at the EOL after they became parents, they also felt that they were better able to show empathy to parents of their patients.
Bateman LB; White ML; Tofil NM; Clair JM; Needham BL
Health Communication
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1080/10410236.2016.1196412">10.1080/10410236.2016.1196412</a>
Deep Brain Stimulation in Rare Inherited Dystonias
adolescent; clinical assessment; disease duration; time to treatment; dystonic disorder/su [Surgery]; priority journal; follow up; school child; outcome assessment; Dystonia; clinical effectiveness; gabapentin/dt [Drug Therapy]; human; article; child; adult; clinical article; aged; surgery; middle aged; disease severity; dystonia; phenotype; rating scale; ataxia telangiectasia/di [Diagnosis]; ataxia telangiectasia/dt [Drug Therapy]; atypical dopa responsive dystonia/di [Diagnosis]; atypical dopa responsive dystonia/dt [Drug Therapy]; baclofen/dt [Drug Therapy]; benzodiazepine derivative/dt [Drug Therapy]; brain depth stimulation; Burke Fahn Marsden Dystonia Rating Scale; cerebellar ataxia/di [Diagnosis]; cerebellar ataxia/dt [Drug Therapy]; chorea/di [Diagnosis]; chorea/dt [Drug Therapy]; clobazam/dt [Drug Therapy]; clonazepam/dt [Drug Therapy]; Deep brain stimulation; diazepam/dt [Drug Therapy]; dystonia/di [Diagnosis]; dystonia/dt [Drug Therapy]; dystonic disorder/th [Therapy]; entacapone/cb [Drug Combination]; entacapone/dt [Drug Therapy]; escitalopram/dt [Drug Therapy]; extrapyramidal syndrome/di [Diagnosis]; extrapyramidal syndrome/dt [Drug Therapy]; haloperidol/dt [Drug Therapy]; Inherited dystonia; levodopa/dt [Drug Therapy]; lorazepam/dt [Drug Therapy]; methylmalonic aciduria/di [Diagnosis]; methylmalonic aciduria/dt [Drug Therapy]; mirtazapine/dt [Drug Therapy]; motor dysfunction assessment; nemaline myopathy/di [Diagnosis]; nemaline myopathy/dt [Drug Therapy]; neuronal ceroid lipofuscinosis/di [Diagnosis]; neuronal ceroid lipofuscinosis/dt [Drug Therapy]; olanzapine/dt [Drug Therapy]; pramipexole/cb [Drug Combination]; pramipexole/dt [Drug Therapy]; preoperative care; risperidone/dt [Drug Therapy]; selegiline/cb [Drug Combination]; selegiline/dt [Drug Therapy]; tetrabenazine/dt [Drug Therapy]; therapy effect; tizanidine/dt [Drug Therapy]; trazodone/dt [Drug Therapy]; Treatment; trihexyphenidyl/cb [Drug Combination]; trihexyphenidyl/dt [Drug Therapy]; trisomy/di [Diagnosis]; trisomy/dt [Drug Therapy]; Wilson disease/di [Diagnosis]; Wilson disease/dt [Drug Therapy]; woodhouse sakati syndrome/di [Diagnosis]; woodhouse sakati syndrome/dt [Drug Therapy]; x trisomy/di [Diagnosis]; x trisomy/dt [Drug Therapy]; tone and motor problems; ataxia telangiectasia; MCM deficiency; NCL; Nemaline myopathy; surgical intervention; Deep Brain Stimulation
Background Rare causes of inherited movement disorders often present with a debilitating phenotype of dystonia, sometimes combined with parkinsonism and other neurological signs. Since these disorders are often resistant to medications, DBS may be considered as a possible treatment. Methods Patients with identified genetic diseases (ataxia-telangiectasia, chorea-achantocytosis, dopa-responsive dystonia, congenital nemaline myopathy, methylmalonic aciduria, neuronal ceroid lipofuscinosis, spinocerebellar ataxia types 2 and 3, Wilson's disease, Woodhouse-Sakati syndrome, methylmalonic aciduria, and X trisomy) and disabling dystonia underwent bilateral GPi DBS (bilateral thalamic Vim nucleus in 1 case). The primary outcome was the difference in the Burke-Fahn-Marsden Dystonia Rating Scale (BFMDRS) between baseline, 1 year and last available follow-up. Preoperative factors such as age at surgery, disease duration at surgery, proportion of life lived with dystonia and severity of dystonia were correlated to the primary outcome. Results Eleven patients were operated between February 2003 and December 2013. Age and duration of disease at time of surgery were 30+/-19 and 12.5+/-15.7 years, respectively. DBS effects on dystonia severity were variable but overall marginally effective, with a mean improvement of 7.9% (p=0.39) at 1-year follow-up and 16.7% (p=0.46) at last follow-up (mean 47.3+/-19.9 months after surgery). No preoperative factors were identified to predict the surgical outcome. Conclusion Our findings support the current knowledge that DBS is modestly effective in treating rare inherited dystonias with a combined phenotype. However, the BFMDRS might not be the best tool to measure outcome in these severely affected patients. Copyright © 2016 Elsevier Inc.
Beaulieu-Boire I; Aquino C C; Fasano A; Poon Y Y; Fallis M; Lang A E; Hodaie M; Kalia S K; Lozano A; Moro E
Brain Stimulation
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.brs.2016.07.009" target="_blank" rel="noreferrer noopener">10.1016/j.brs.2016.07.009</a>
Keeping All Options Open: Parents' Approaches To Advance Care Planning
Advance Care Planning; Children and Young People; Interviews; Life-limiting Conditions; Life-threatening Illnesses; Parents
BACKGROUND:
Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP.
OBJECTIVE:
To investigate how parents of children and young people with LLCs approach and experience ACP.
METHODS:
Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child's condition, and the timing and nature of decisions made.
RESULTS:
Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so.
DISCUSSION:
This study highlights that parents' approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents' approaches to particular decisions rather than to drive to closure prematurely.
Beecham E; Oostendorp L; Crocker J; Kelly P; Dinsdale A; Hemsley J; Russell J; Jones L; Bluebond-Langner M
Health Expectations
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1111/hex.12500
Partnership Working Between Hospice And Children's Community Nursing Teams.
Child Health; Children’s Community Nursing; Palliative Care; Service Evaluation
This article describes the implementation and evaluation of a new partnership between a children's hospice service and an NHS children's community nursing team to support children's palliative care in the community. Aims and outcomes of the service were established in its initial design and it was monitored for quality and improvement over its first year. Mixed methods of audit and evaluation strategies were used to assess the quality of the service. Findings demonstrate that it has offered significant support to children, and families valued the role of the new Alexander's nurse. Professionals described improved communication and working relationships through the collaborative partnership. The evaluation also identified areas of learning for future development of the service.
Bennett H; McCarthy L; McKinnon S
Nursing Children And Young People
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.7748/ncyp.2016.e752
An Order Protocol For Respiratory Distress/acute Pain Crisis In Pediatric Palliative Care Patients: Medical And Nursing Staff Perceptions
Acute Pain/therapy; Adolescent; Adult; Advance Directives; Aged; Attitude Of Health Personnel; Canada; Child; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Medical Staff Hospital/psychology; Middle Aged; Nursing Staff Hospital/psychology; Palliative Care/standards; Pediatric Nursing/standards; Practice Guidelines As Topic; Respiratory Distress Syndrome Adult/therapy; Surveys And Questionnaires; Young Adult
BACKGROUND:
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family, the OPD is prescribed by the attending physician whenever judged appropriate. The OPD can then be initiated by the bedside nurse when necessary; the physician is notified after the first dose is administered.
OBJECTIVES:
The study objectives were to evaluate the perceptions and experience of the medical/nursing staff towards the use of the OPD.
METHODS:
A survey was distributed to all physicians/nurses working on wards with pediatric palliative care patients. Answers to the survey were anonymous, done on a voluntary basis, and after consent of the participant.
RESULTS:
Surveys (258/548) were answered corresponding to a response rate of 47%. According to the respondents, the most important motivations in using the OPD were the desire to relieve patient's distress and the speed of relief of distress by the OPD; the most important obstacles were going against the patient's/his or her family's wishes and fear of hastening death. The respondents reported that the OPD was frequently (56%) or always (36%) effective in relieving the patient's distress. The respondents felt sometimes (16%), frequently (34%), or always (41%) comfortable in giving the OPD. They thought the OPD could never (12%), rarely (32%), sometimes (46%), frequently (8%), or always (1%) hasten death. Physicians were less favorable than nurses with the autonomy of bedside nurses to initiate the OPD before notifying the physician (p = 0.04). Overall, 95% of respondents considered that they would use the OPD in the future.
CONCLUSIONS:
Data from this survey shows that respondents are in favor of using the OPD at SJH and find it effective. Further training as well as support for health care professionals are mandatory in such palliative care settings.
Bidet G; Daoust L; Duval M; Ducruet T; Toledano B; Humbert N
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1089/jpm.2015.0100
Diagnosis and Management of Drooling in Children With Progressive Dystonia: A Case Series of Patients With MEGDEL Syndrome
feeding difficulties; MEGDEL syndrome; surgical intervention; pharmacological intervention; bilateral submandibular gland excision; parotid duct ligation; advice to interrupt tongue protrusion; adenotonsillectomy; feeding advice; antireflux medication
Drooling is a common problem in children with progressive dystonia. The authors noted a 58% incidence of drooling in 22/38 children with MEGDEL, a rare neurodegenerative cause of dystonia and report on the clinical course of four patients. Drooling of varying severity and subsequent respiratory problems were treated at the authors' multidisciplinary saliva-control outpatient clinic. One patient improved on antireflux medication, the second after medication with drooling as side effect was changed. Two other patients underwent salivary gland surgery, one of whom significantly improved; the other died shortly after surgery. The heterogeneity of the cases presented shows the need for stepwise and personalized treatment. The authors recommend the following: (1) optimize the treatment of the underlying neurological condition and replace medication that stimulates saliva secretion; (2) treat constipation, scoliosis, and gastroesophageal reflux if there is still a risk of chronic aspiration of saliva; (3) perform more intense/invasive treatment (botulinum toxin, salivary gland surgery).
Blommaert D; van Hulst K; Hoogen F J A van den; Erasmus C E; Wortmann S B
Journal of Child Neurology
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0883073816650037" target="_blank" rel="noreferrer noopener">10.1177/0883073816650037</a>
'I Have to Live with the Decisions I Make': Laying a Foundation for Decision Making for Children with Life-limiting Conditions and Life-Threatening Illnesses
Communication; Cystic Fibrosis; Decision-making; Oncology; Qualitative Research
The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this article we lay out factors that bear on the success of clinical consultations and the maintenance of the essential clinician-parent relationship at progression or deterioration of LLCs or LTIs. We suggest an approach to engaging parents in conversations about care and treatment that recognises and appreciates the dilemmas which clinicians and parents face and in so doing provides a way for everyone to live with the decisions that are made. A close analysis of a consultation at progression and excerpts of encounters among parents, clinician and researcher are used to illustrate our approach to research, analysis and development of recommendations for clinical practice.
Bluebond-Langner M; Hargrave D; Henderson EM; Langner R
Archives Of Disease In Childhood
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://dx.doi.org/10.1136/archdischild-2015-310345">10.1136/archdischild-2015-310345</a>
Determinants of sleep disturbances in Rett syndrome: Novel findings in relation to genotype
Middle Aged; Infant Newborn; Severity of Illness Index; Epilepsy/ge [Genetics]; Young Adult; Child; Humans; Adult; Adolescent; Child Preschool; Infant; Mutation; Epilepsy/di [Diagnosis]; Sleep Wake Disorders/di [Diagnosis]; Phenotype; Genetic Association Studies; Genotype; Rett Syndrome/ge [Genetics]; Rett Syndrome/pp [Physiopathology]; Sleep Wake Disorders/ge [Genetics]; 0 (Methyl-CpG-Binding Protein 2); Methyl-CpG-Binding Protein 2/ge [Genetics]; Rett Syndrome/di [Diagnosis]; sleep disturbance/disorders; Rett syndrome; trajectory; characteristics
Rett syndrome is a rare but severe neurological disorder associated with a mutation in the methyl CpG binding protein 2 (MECP2) gene. Sleep problems and epilepsy are two of many comorbidities associated with this disorder. This study investigated the prevalence and determinants of sleep problems in Rett syndrome using an international sample. Families with a child with a confirmed Rett syndrome diagnosis and a MECP2 mutation registered in the International Rett Syndrome Phenotype Database (InterRett) were invited to participate. Questionnaires were returned by 364/461 (78.9%) either in web-based or paper format. Families completed the Sleep Disturbance Scale for Children and provided information on the presence, nature, and frequency of their child's sleep problems. Multivariate multinomial regression was used to investigate the relationships between selected sleep problems, age group, and genotype and linear regression for the relationships between sleep disturbance scales and a range of covariates. Night waking was the most prevalent sleep problem affecting over 80% with nearly half (48.3%) currently waking often at night. Initiating and maintaining sleep was most disturbed for younger children and those with a p.Arg294* mutation. Severe seizure activity was associated with poor sleep after adjusting for age group, mutation type, and mobility. We were surprised to find associations between the p.Arg294* mutation and some sleep disturbances given that other aspects of its phenotype are milder. These findings highlight the complexities of aberrant MECP2 function in Rett syndrome and explain some of the variation in manifestation of sleep disturbances. © 2016 Wiley Periodicals, Inc.
Boban S; Wong K; Epstein A; Anderson B; Murphy N; Downs J; Leonard H
American Journal of Medical Genetics Part A
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/ajmg.a.37784" target="_blank" rel="noreferrer noopener">10.1002/ajmg.a.37784</a>
Practical Recommendations For Diagnosis And Management Of Respiratory Muscle Weakness In Late-onset Pompe Disease
Adult; Glycogen Storage Disease Type Ii/diagnosis; Glycogen Storage Disease Type Ii/pathology; Glycogen Storage Disease Type Ii/therapy; Humans; Infant; Muscle Weakness/pathology; Muscle Weakness/therapy; Respiratory Function Tests; Respiratory Insufficiency/therapy; Respiratory Muscles/pathology; Surveys And Questionnaires
Pompe Disease; Cough Assistance; Mechanical Ventilation; Neuromuscular Disorders; Respiratory Muscle Weakness
Pompe disease is an autosomal-recessive lysosomal storage disorder characterized by progressive myopathy with proximal muscle weakness, respiratory muscle dysfunction, and cardiomyopathy (in infants only). In patients with juvenile or adult disease onset, respiratory muscle weakness may decline more rapidly than overall neurological disability. Sleep-disordered breathing, daytime hypercapnia, and the need for nocturnal ventilation eventually evolve in most patients. Additionally, respiratory muscle weakness leads to decreased cough and impaired airway clearance, increasing the risk of acute respiratory illness. Progressive respiratory muscle weakness is a major cause of morbidity and mortality in late-onset Pompe disease even if enzyme replacement therapy has been established. Practical knowledge of how to detect, monitor and manage respiratory muscle involvement is crucial for optimal patient care. A multidisciplinary approach combining the expertise of neurologists, pulmonologists, and intensive care specialists is needed. Based on the authors' own experience in over 200 patients, this article conveys expert recommendations for the diagnosis and management of respiratory muscle weakness and its sequelae in late-onset Pompe disease.
Boentert M; Prigent H; Várdi K; Jones HN; Mellies U; Simonds AK; Wenninger S; Barrot Cortés E; Confalonieri M
International Journal Of Molecular Sciences
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.3390/ijms17101735
Family Conferences In The Neonatal Icu: Observation Of Communication Dynamics And Contributions.
Communication; Critical Illness/psychology; Decision Making; Empathy; Female; Humans; Infant Newborn; Intensive Care Units Neonatal; Male; Parents/psychology; Professional-family Relations; Qualitative Research; Terminal Care/psychology
Abstract
OBJECTIVES:
Clinicians in the neonatal ICU must engage in clear and compassionate communication with families. Empirical, observational studies of neonatal ICU family conferences are needed to develop counseling best practices and to train clinicians in key communication skills. We devised a pilot study to record and analyze how interdisciplinary neonatal ICU clinicians and parents navigate difficult conversations during neonatal ICU family conferences.
DESIGN:
We prospectively identified and audiotaped a convenience sample of neonatal ICU family conferences about "difficult news." Conversations were analyzed using the Roter interaction analysis system, a quantitative tool for assessing content and quality of patient-provider communication.
SETTING:
An urban academic children's medical center with a 45-bed level IV neonatal ICU.
SUBJECTS:
Neonatal ICU parents and clinicians.
INTERVENTIONS:
None.
MEASUREMENTS AND MAIN RESULTS:
We analyzed 19 family conferences that included 31 family members and 23 clinicians. The child's mother was included in all conferences, and a second parent, usually the father, was present in 13 conferences. All but one conference included multiple medical team members. On average, physicians contributed 65% of all dialogue, regardless of who else was present. Over half (56%) of this dialogue involved giving medical information; under 5% of clinician dialogue involved asking questions of the family, and families rarely (5% of dialogue) asked questions. Conversations were longer with the presence of nonphysician clinicians, but this did not increase the amount of dialogue about psychosocial information or increase parent dialogue.
CONCLUSIONS:
We collected a novel repository of audio-recorded neonatal ICU family meetings that offers insights into discussion content and process. These meetings were heavily focused on biomedical information even when interdisciplinary clinicians were present. Clinicians always talked more than parents, and no one asked many questions. Maximizing the participation of interdisciplinary clinicians in neonatal ICU family meetings may require explicit strategies. Methods to increase family engagement should be targeted.
Boss RD; Donohue PK; Larson SM; Arnold RM; Roter DL
Pediatric Critical Care Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1097/PCC.0000000000000617
Development and validation of the Communicating with Family about Brain Death Scale
Communication; Family; Tissue and Organ Procurement; adolescent; Adult; Attitudes; brain-dead organ donation; Brain Death/ diagnosis; communicating with family about brain death; Cross-Sectional Studies; decision making; end-of-life decision making; FACTOR analysis; Female; first-person organ donation consent laws; Health Knowledge; Humans; Male; Middle Aged; misconceptions about brain death; Practice; Reproducibility of Results; statistical; Young Adult
This study reports development of a scale assessing communication with family about brain-dead organ donation. Two cross-sectional studies demonstrated scale validity. Tests of internal, external, and predictive validity were conducted using confirmatory factor analysis. In both studies, the same 6 items were shown to be unidimensional with acceptable reliability. Parallelism was shown between the Brain Death Scale and a measure of communication with family. Predictive validity was exhibited between participants' donor status and the Brain Death Scale. The scale was associated with knowledge about brain death confirming misconceptions about brain-dead organ donation.
2016-07
Bresnahan M; Zhuang J
Journal Of Health Psychology
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1359105314550349" target="_blank" rel="noreferrer">10.1177/1359105314550349</a>
Improving Training In Palliative Care For Pediatric Fellows -- A Simulation-based Multi-institution Trial.
Objectives
Describe different methods of palliative care education,
including simulation-based education and
didactic education.
Delineate differences between pediatric fellow
self-assessment data and external reviewer data
of fellow performance.
Describe how a simulation-based curriculum can
lead to changes in palliative care consultation at
an institution.
Original Research Background. Although palliative
care (PC) skills can be learned ‘‘on the job,’’ pediatric
trainees have few opportunities and often receive no
formal PC education.
Research Objectives. (1) To assess whether simulation-based
or didactic education is a more effective
method for teaching PC communication. (2) To assess
competence over time. (3) To determine if PC consultation
rates would increase after simulation-based
education.
Methods. (1) 35 pediatric fellows from cardiology, critical
care, oncology and neonatology at two institutions
enrolled 17 in the intervention group (IG) and 18 in
the control group (CG). IG fellows participated in a 2-
day intervention over three months consisting of three
simulation scenarios with debriefing and a videotaped
PC lecture. CG fellows received written PC education
designed to be similar in content and time. Assessments
were measured at baseline, post-intervention and at
three months; mean differences for each outcome measure
were assessed. (2) External reviewers rated IG encounters
on nine communication competencies.
Changes over time were assessed. (3) PC consultations
from the IG institution’s four departments were
compared in the six months pre- and post-intervention,
normalized to inpatient admissions and hospital days.
Results. Over three months, IG fellows significantly
improved in self-efficacy (p¼0.003) and perceived adequacy
of medical education (p<0.001), but not
knowledge (p¼0.20) when compared to CG fellows.
External reviewers noted improvement in three
competencies (relationship building (p¼0.04), opening
discussion (p¼0.01), gathering information
(p¼0.01)). There was a 65% increase in PC consultation
rate, but no difference when normalized to inpatient
admissions or hospital days (OR 1.5, 95% CI
0.9-2.5 for both). IG fellows more strongly agreed
that they would use (p¼0.04) and recommended
(p¼0.004).the education.
Vol. 51 No. 2 February 2016 Schedule with Abstracts 323
Conclusion. Our simulation-based curriculum is an
effective method for teaching PC communication to
pediatric fellows compared with a didactic education
model.
Brock K; Cohen H; Sourkes B; Good J; Halamek L
Journal Of Pain And Symptom Management
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.141
Cause Of Death Of Infants And Children In The Intensive Care Unit: Parents’ Recall Vs Chart Review.
Risk; Information; Family-members; Of-life Care; Communication; Nursing Perspectives; Complicated Grief; Critical Care Medicine
BACKGROUND:
More than 55 000 children die annually in the United States, most in neonatal and pediatric intensive care units. Because of the stress and emotional turmoil of the deaths, the children's parents have difficulty comprehending information.
OBJECTIVES:
To compare parents' reports and hospital chart data on cause of death and examine agreement on cause of death according to parents' sex, race, participation in end-of-life decisions, and discussion with physicians; deceased child's age; unit of care (neonatal or pediatric); and hospital and intensive care unit lengths of stay.
METHODS:
A descriptive, correlational design was used with a structured interview of parents 1 month after the death and review of hospital chart data. Parents whose children died in intensive care were recruited from 4 South Florida hospitals and from Florida Department of Health death records.
RESULTS:
Among 230 parents, 54% of mothers and 40% of fathers agreed with the chart cause of death. Agreement did not differ significantly for mothers or fathers by race/ethnicity, participation in end-of-life decisions, discussions with physicians, or mean length of hospital stay. Agreement was better for mothers when the stay in the intensive care unit was the shortest. Fathers' agreement with chart data was best when the deceased was an infant and death was in the pediatric intensive care unit.
CONCLUSIONS:
Death of a child is a time of high stress when parents' concentration, hearing, and information processing are diminished. Many parents have misconceptions about the cause of the death 1 month after the death.
Brooten D; Youngblut JM; Caicedo C; Seagrave L; Cantwell GP; Totapally B
American Journal Of Critical Care
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Compassionate Extubation In The Home: It Takes A Team
Objectives
•Describe steps to take before starting the procedure to ensure comfort for the patient and family.
•Identify likely symptoms during and after the extubation and their management.
•Describe ways to support family and staff during and after the extubation.
Compassionate extubation or the removal of mechanical ventilation in the home requires the involvement of the entire hospice team to ensure both patient and family comfort. With the assistance of the hospice physician, nurse, social worker and chaplain, patients and families should not have to leave their home to come off ventilatory support.
We will present four cases of home discontinuation of support: two elderly female patients and two children. We did not have IV access in any of the cases but were able to anticipate and manage their symptoms using subcutaneous medications administered via a pump or medications administered via a gastric tube in one of the pediatric patients.
The process involved the whole team (ie, hospice physician, nurse case manager, social worker, and spiritual counselor) making visits to the home prior to and during the extubation. Also, the pharmacy department was essential in providing assistance in symptom management. These were emotionally difficult experiences for staff, as well as for families. We will describe ways to provide effective bereavement support for families as well as support for staff. Our hospice team was able to provide what these patients and families needed in a compassionate way and in an appropriate setting.
Review of the literature reveals little information on home extubation. We hope to provide information on positive experiences for patients, their families, and staff.
Brown E; Thorn C; Cowell D
Journal Of Pain And Symptom Management
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.169