The Use of Cannabinoids in Pediatric Palliative Care-A Retrospective Single-Center Analysis
child; Palliative Care; diagnosis; article; female; human; male; retrospective study; Cannabinoids; spasticity; epilepsy; quality of life; outpatient; palliative therapy; pain; anxiety; clinical article; school child; human tissue; side effect; adolescent; therapy; drug dose increase; drug combination; drug therapy; nausea; adverse drug reaction; pediatric patient; loss of appetite; paresis; restlessness; special situation for pharmacovigilance; cannabinoid; add on therapy; decreased appetite
This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized outpatient pediatric palliative care (SOPPC) team at the Department of Pediatrics and Adolescent Medicine of the Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU). Thirty-one patients with a primary diagnosis of neuropediatric, oncologic, metabolic, and cardiologic categories were included. The indications we identified were spasticity, pain, restlessness, anxiety, loss of appetite, epilepsy, and paresis. Certain aspects of quality of life were improved for 20 of 31 patients (64.5%). For nine patients (29%), no improvement was detected. No conclusions could be drawn for two patients (6.5%). Adverse events were reported for six of the thirty-one patients (19.4%). These were graded as mild, including symptoms such as restlessness, nausea, and behavioral issues. We detected no clinically relevant interactions with other medications. We collected fundamental data on the use of cannabinoids by pediatric palliative patients. Cannabinoids are now frequently administered in pediatric palliative care. They seem to be safe to use and should be considered an add-on therapy for other drug regimens.
Tagsold D; Toni I; Trollmann R; Woelfle J; Gravou-Apostolatou C
Children
2024
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children11020234" target="_blank" rel="noreferrer noopener">10.3390/children11020234</a>
Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates
Infant Newborn; Decision Making; Germany; terminal care; adult; female; human; major clinical study; male; newborn; quality of life; aged; interview; physician; life sustaining treatment; shared decision making; cross-sectional study; medical ethics; middle aged; adolescent; parent; conference paper; decision making; euthanasia; treatment withdrawal; socioeconomics; attitude to health; sociodemographics; comprehension; German (language)
Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the general public have not yet been investigated. Objective: To assess (1) attitudes in the general public toward euthanasia and withdrawal of life-prolonging treatment in neonates with severe life-limiting conditions, (2) knowledge of current German recommendations, and (3) values in the German society regarding ethical issues and proxy decisions at the beginning of life. Design, setting, and participants: This cross-sectional study was performed in Germany and used an exploratory design to analyze responses to an interview conducted by an independent, established commissioned polling institute in March and April 2022. Participants were 16 years or older, with German language fluency and comprehension and living in Germany. Main outcomes and measures: Knowledge about recommendations for euthanasia and withdrawal of life-prolonging treatment as well as personal attitudes toward (1) euthanasia and withdrawal of life-prolonging treatment and (2) surrogate end-of-life decision-making for newborn infants were assessed. Results: The study included 2116 participants (1077 females [50.9%]; mean [SD] age 52.1 [18.7] years). Of the participants, 16.8% (311 of 1851) reported knowing the German recommendations for euthanasia and withdrawal of life-prolonging treatment for neonates. Euthanasia and withdrawal of life-prolonging treatment were supported by 64.7% (1369 of 2116) and 77.9% (1649 of 2116) of respondents, respectively. Shared decision-making between parents and physicians for neonates in end-of-life situations was supported by 65.6% of participants (1388). In situations where shared decision-making was not possible, 73.4% of respondents (1019 of 1388) put the ultimate decision to the parents. The magnitude of the associations was low between sociodemographic factors and views on ethical issues and customary practices involved in end-of-life decisions for neonates. Conclusions and relevance: Results of this cross-sectional study suggested that most respondents were not aware of the national German recommendations for euthanasia and withdrawal of life-prolonging treatment for sick and extremely preterm newborns. When counseling parents of periviable newborns, clinicians may need to exert more effort in explaining the legal and ethical framework; a highly individualized approach is warranted.
Schneider K; Roll S; Tissen-Diabate T; Buhrer C; Garten L
JAMA Network Open
2024
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1001/jamanetworkopen.2023.53264" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2023.53264</a>
Social work practice in perinatal palliative care: an overview
Palliative Care; adult; article; female; human; male; quality of life; palliative therapy; knowledge; bereavement; social worker; health care access; care behavior; collaborative care team; social work practice; Social Work; social work; social justice
Social workers in Perinatal Palliative Care (PPC) play an essential role in caring for birthing people carrying a baby with a life-limiting condition and their families. Perinatal palliative care is consistent with social work values concerning fostering quality of life and promoting social justice and access to care. Social workers play a multidimensional role in providing a holistic approach to caring for the birthing person, baby, and family. Although social workers may be part of an interdisciplinary care team, their role is not defined solely by the goals of the greater team, nor has it been discussed in depth in the perinatal palliative care literature. The purpose of this paper is to describe the knowledge, values, and skills essential to the role of the social worker in a hospital-based perinatal palliative care team. A case study will be used to illustrate the relevant practices, and implications are outlined.
Santiago-Warner S
Social Work in Health Care
2024
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/10.1080/00981389.2024.2316697" target="_blank" rel="noreferrer noopener">10.1080/00981389.2024.2316697</a>
Flourishing, religion, and burnout among caregivers working in pediatric palliative care
child; Palliative Care; article; controlled study; female; human; male; palliative therapy; coping; dying; South Africa; qualitative analysis; caregiver; cross-sectional study; prevalence; adolescent; multidisciplinary team; convenience sample; job satisfaction; religion; work environment; life satisfaction; terminally ill patient; burnout; job stress
Introduction: Providers working with children who are dying are especially prone to burnout. Encouraging models of human flourishing may mitigate burnout and improve quality of care. However, models of job satisfaction and human flourishing have not been well-described. This project explores factors that promote human flourishing among caregivers working with children in pediatric palliative care in South Africa. Methods: A convenience sample of caregivers working in pediatric palliative care were invited to complete an anonymous, confidential survey comprised of validated instruments. The survey also included open-ended questions to explore opinions and attitudes about satisfaction, struggles, and coping. Results: Twenty-nine people from a variety of occupations and work environments completed the survey. The prevalence of burnout was 3/29 (10%). Life satisfaction was associated with private religious activities (P = .38, P < .05), and carrying religion into all aspects of life (P = .44, P < .05). Burnout was not associated with life satisfaction. Qualitative analysis of the open-ended questions revealed the following themes as factors contributing to their joy in work: being able to make a difference, finding meaning and purpose, having a relationship with the children and their families, and with the multi-disciplinary team. The greatest challenges in their work were identified as the lack of resources, challenges within their team, and emotional demands. Conclusions: Despite job stress and working with terminally ill children, several factors were associated with flourishing. These findings are particularly relevant to enhance caregiving in the resource-challenged setting of pediatric palliative care in South Africa.
Oberholzer AE; Doolittle BR
International Journal of Psychiatry in Medicine
2024
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<a href="http://doi.org/10.1177/00912174241229926" target="_blank" rel="noreferrer noopener">10.1177/00912174241229926</a>
The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care
child; Palliative Care; article; female; human; male; social support; palliative therapy; coping; sibling; clinical article; Portugal; clinical practice; adolescent; caregiver; semi structured interview; family; grandchild; psychologic assessment; Coping Strategy Questionnaire; clinical assessment tool; grandparent
In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are underexplored in the literature and clinical practice. The aim of the present study is to propose a psychological experience assessment tool of grandparents in this context. It consists of a sociodemographic and clinical data sheet and a semi-structured interview based on sharing a testimony with other grandparents. On the basis of the latter, 10 dimensions were explored through the grandparents’ own perspective: representation of the illness; representation of the sick grandchild; changes in routine and life; family impact; grandparents’ contributions to the family system; social support and coping strategies; emotional impact; triple concern; needs identification; and post-traumatic growth. The tool can be used in person or remotely and may be combined with other instruments. Its application enables a personalized identification of needs and challenges for each family, promoting the adjustment of the clinical intervention to their wellbeing and resilience from an eco-systemic perspective. The clinical tool is presented in detail and its importance in the context of research and systemic intervention is discussed.
Nogueira AJ; Ribeiro MT
Clinics and Practice
2024
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<a href="http://doi.org/10.3390/clinpract14010010" target="_blank" rel="noreferrer noopener">10.3390/clinpract14010010</a>
Psychometrics assessment of ethical decision-making around end-of-life care scale for adolescents in the final stage of life
child; Adolescent; Terminal Care; terminal care; article; female; human; male; validity; Psychometrics; reliability; Iran; human experiment; health care personnel; adolescent; case control study; decision making; nurse manager; psychometry; ethical decision making; confirmatory factor analysis; Cronbach alpha coefficient; internal consistency; exploratory factor analysis
Introduction: Healthcare professionals have a critical role in ethical decision-making around end-of-life care. Properly evaluating the ethical decision-making of health care professionals in end-of-life care requires reliable, tailored, and comprehensive assessments. The current study aimed to translate and assess psychometrically a Persian version of the ethical decision making in end-of-life care scale for Iranian adolescents in the final stages of life. Methods: The present study investigates the methodology and multicenter research. 310 healthcare professionals who treat/care for adolescents at the end of life were selected from 7 cities in Iran. The original version of the end-of-life care decision-making scale was translated into Persian using the forward-backward translation method, and its psychometric properties were evaluated using COSMIN criteria. Results: Exploratory factor analysis revealed that the factor loadings of the items ranged from 0.68 to 0.89, all of which were statistically significant. Furthermore, three factors had eigenvalues greater than 1, accounting for 81.64% of the total variance. Confirmatory factor analysis indicated a proper goodness of fit in the hypothesized factor structure. The internal consistency reliability of the tool was assessed in terms of its homogeneity, yielding a Cronbach's alpha coefficient of 0.93. Conclusion: The Persian version of the End-of-Life Care Decision-Making Scale demonstrates satisfactory validity and reliability among healthcare professionals working with adolescents in the final stages of life. Therefore, nursing managers can utilize this tool to measure and evaluate ethical decision-making in end-of-life care for adolescents in the final stages of life and identify the most appropriate strategies, including educational interventions, to improve ethical decision-making in end-of-life care if necessary.
Mohammadi F; Masoumi SZ; Khazaei S; Hosseiny SMM
Frontiers in Pediatrics
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fped.2023.1266929" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1266929</a>
Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study
child; Palliative Care; adult; article; female; human; male; palliative therapy; aged; coping; knowledge; Spain; personal experience; terminal disease; parent; qualitative research; health care personnel; decision making; interview; pediatric hospital; clinician; religion; philosophy; religiosity; Southern European
Background: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an increase of cultural and religious diversities resulting in a much broader spectrum of spiritual and religious beliefs. This study aimed to explore the parents' own spirituality, religiosity, and philosophy of life in coping with the care of their child with palliative needs. Methods: Qualitative interviews of 14 parents of children included in a palliative care program in a pediatric hospital in Barcelona, Spain. Inclusion criteria were parents of children who have been cared for the palliative care program for a minimum of 3 months and who displayed a willingness to talk about their personal experiences and gave written consent. Interviews were audio-recorded, transcribed by an independent service, and analyzed on a case-by-case basis using Interpretative Phenomenological Analysis. Results: The three domains identified were life philosophy, relational, and transcendent. Life philosophy included principles that guided parents' decision-making, and how the onset of their child's serious illness had promoted a change in their values. Relational was focused on how they perceived themselves (e.g. motherhood), others (e.g. one's own child exceptionality), and the way they believed others perceived and supported them (e.g. relatives, friends, and healthcare providers). The transcendent domain involved God-related concepts, divinity and divine intervention (e.g. a miracle as an interpretive framework for that which cannot be explained within scientific knowledge limitations). Conclusions: Inflexible categories identifying parents as having a particular religious faith tradition are not sufficient to capture the interrelation of knowledges (ethical, religious, scientific) that each parent generates when faced with their child receiving palliative care. Clinicians should explore parents' spirituality in an individualized way that responds to the uniqueness of their experiential process.
Miquel P; Clemente I; Ciccorossi M
BMC Palliative Care
2024
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<a href="http://doi.org/10.1186/s12904-024-01345-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01345-2</a>
Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions
child; Adolescent; Questionnaires; article; controlled study; female; human; male; palliative therapy; clinical article; caregiver; school child; human experiment; prospective study; adolescent; wakefulness; therapy; decision making; drug therapy; chronic disease; questionnaire; special situation for pharmacovigilance; actimetry; diagnostic procedure; protocol; sleep; actigraph; sleep efficiency; sleep time; stage 1 sleep; wake after sleep onset
Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other measures of sleep diagnostics. Methods: In this monocentric prospective study N = 26 children and adolescents with life-limiting conditions treated on a pediatric palliative care unit were assessed. For three consecutive nights they wore an actigraph; the 24-hours sleep protocol documented by nurses and the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SCAC) answered by parents were analyzed. Patient characteristics and the parameters sleep onset, sleep offset, wake after sleep onset (WASO), number of wake phases, total sleep time (TST) and sleep efficiency (SE) were descriptively examined. Percentage bend correlations evaluated the three measures' concordance. Results: Descriptively, and except for the number of waking episodes, the different measures' estimations were comparable. Significant correlations existed between actigraphy and the sleep protocol for sleep onset (r = 0.83, p = < 0.001) and sleep offset (r = 0.89, p = < 0.001), between actigraphy and SCAC for SE (r = 0.59, p = 0.02). Conclusion: Agreement of actigraphy with the focused sleep measures seems to be basically given but to varying degrees depending on the considered parameters.
Kubek LA; Claus B; Zernikow B; Wager J
BMC Palliative Care
2024
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/s12904-024-01394-7" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01394-7</a>
Survival, short-term morbidity of extremely low gestational age infants and their predictors
Infant; sepsis; cohort analysis; controlled study; female; human; male; retrospective study; perception; palliative therapy; Pregnancy; stillbirth; gender; necrotizing enterocolitis; clinical article; gestational age; neonatal intensive care unit; prevalence; infant; conference abstract; birth weight; corticosteroid; length of stay; mortality risk; Gestational Age; brain hemorrhage; regression analysis; univariate analysis; survival prediction; encephalomalacia; morbidity; lung dysplasia; probability; retrolental fibroplasia
BACKGROUND: Despite advances in neonatal care for extremely low gestational age (ELGA) infants, they experience high rates of mortality and morbidity. Local data on survival, predictors, and outcomes of ELGA infants is crucial in order to provide accurate antenatal counseling. <br/>OBJECTIVE(S): To determine the survival and morbidities of ELGA infants in our region stratified by gestational age. DESIGN/METHODS: We performed a retrospective cohort study of infants born at <26 weeks gestational age who received intensive care at two level III Neonatal Intensive Care Units between January 1st 2014 and December 31st 2017. We excluded stillbirths and infants who received only palliative care from birth. Outcomes included survival to discharge home (or transfer to another center), length of admission, and the following short-term morbidities: intraventricular hemorrhage (IVH) grade III - IV, periventricular leukomalacia (PVL), bronchopulmonary dysplasia (BPD), necrotizing enterocolitis (NEC) Bell's Stage >=2, late-onset sepsis, and retinopathy of prematurity (ROP) requiring treatment. A multivariable regression analysis was performed to analyze three factors identified as significant (p<.05) on univariate analysis. <br/>RESULT(S): 117 infants were included: 8 infants at 22 weeks, 20 at 23 weeks, 38 at 24 weeks, and 51 at 25 weeks. The rates of survival were 37.5%, 50.0%, 68.4%, and 76.5% at 22, 23, 24, and 25 weeks, respectively. The probability of survival was similar for infants born at 22 and 23 weeks GA and significantly lower than for infants born at 24 and 25 weeks (fig.1). The mean (+/-SD) length of stay in the NICU was 114.6 +/- 33.7 days. The overall prevalence of short-term morbidities was 25.9% for IVH grade III - IV, 5.4% for PVL, 89.9% for BPD, 16.1% for NEC, 40.0% for late-onset sepsis, and 19.3% for ROP requiring treatment. Only 2.7% of infants who survived >=36 weeks (post-menstrual age) had no short-term morbidities. The multivariable regression analysis demonstrated: an increased risk of mortality for every 100g decrease in birth weight (OR=1.97; 95% CI: 1.40 - 1.98; p =.02), an increased risk of mortality for an incomplete course of antenatal corticosteroids (OR=1.58; 95% CI: 1.2 - 1.78; p =.008), and no effect of gender on mortality over time (OR=1.38; 95% CI: 0.8 - 1.68; p=.15). <br/>CONCLUSION(S): ELGA infants from our region faced similarly high rates of mortality and major short-term morbidity compared to other Canadian centers. Infants born at 22 and 23 weeks experienced similar survival trajectories, which should be further explored as it may influence clinical perceptions of viability at 22 weeks. (Figure Presented).
Kis H; Lemyre B; Radonjic A; Feberova J
Paediatrics and Child Health
2019
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<a href="http://doi.org/10.1093/pch/pxz066.129" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz066.129</a>
Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment
Child; child; adult; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; chronic disease; Socioeconomic Factors; gestational age; Referral and Consultation; ethnicity; Only Child; patient referral; tertiary care center; morbidity; mortality; neurologic examination; multidisciplinary team; Hispanic; medicaid; racism; primary medical care; special situation for pharmacovigilance; racial disparity; economic inequality
Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. Study design: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. Results: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. Conclusions: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.
Jones MN; Simpson SL; Beck AF; Cortezzo DE; Thienprayoon R; Corley AMS; Thomson J
Journal of Pediatrics
2024
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.2024.113930" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2024.113930</a>
Finnish children who needed long-term home respiratory support had severe sleep-disordered breathing and complex medical backgrounds
Child; child; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; treatment duration; anxiety; comorbidity; Sleep Disorders; tracheostomy; long term care; follow up; Only Child; home care; university hospital; clinical feature; clinical outcome; psychological aspect; central nervous system disease; disease severity; apnea hypopnea index; adolescent; polysomnography; adenotonsillectomy; Down syndrome; infant; onset age; brain tumor; demographics; multidisciplinary team; data analysis software; developmental delay; tonsillectomy; neuromuscular disease; pneumonia; respiratory distress syndrome; craniofacial surgery; asthma; acute respiratory failure; beta adrenergic receptor blocking agent/pv [Special Situation for Pharmacovigilance]; montelukast/pv [Special Situation for Pharmacovigilance]; developmental disorder; aspiration pneumonia/co [Complication]; childhood obesity; continuous positive airway pressure; Finn (citizen); invasive ventilation; noninvasive positive pressure ventilation; sleep apnea syndromes/th [Therapy]; adenoid hypertrophy; angiotensin receptor antagonist/pv [Special Situation for Pharmacovigilance]; automatic positive airway pressure; beta 2 adrenergic receptor stimulating agent/ih [Inhalational Drug Administration]; beta 2 adrenergic receptor stimulating agent/pv [Special Situation for Pharmacovigilance]; brain hypoxia; cardiovascular agent/pv [Special Situation for Pharmacovigilance]; central sleep apnea syndrome/th [Therapy]; choana atresia/su [Surgery]; corticosteroid/ih [Inhalational Drug Administration]; corticosteroid/pv [Special Situation for Pharmacovigilance]; craniofacial malformation; cranioplasty; diaphragm hernia; dipeptidyl carboxypeptidase inhibitor/pv [Special Situation for Pharmacovigilance]; hypoventilation/th [Therapy]; ICD-10; laryngomalacia; Le Fort III osteotomy; lung hypoplasia; mask/am [Adverse Device Effect]; maxilla hypoplasia/co [Complication]; medical device complication/co [Complication]; nasal mask; nose obstruction/co [Complication]; obstructive sleep apnea/th [Therapy]; orthodontic procedure; respiratory care; skin irritation/co [Complication]; Sleep Apnea Syndromes; sleep disorder/co [Complication]; SPSS version 28.00; steroid/pv [Special Situation for Pharmacovigilance]; tonsillotomy
Aim: No studies have described long-term paediatric home respiratory support in Nordic countries. We examined the clinical characteristics and long-term outcomes of paediatric patients who received continuous positive airway pressure, non-invasive-positive-pressure ventilation and invasive ventilation from a multidisciplinary home respiratory support team. Methods: Retrospective tertiary-level data were collected between 1 January 2010 and 31 December 2020 in Tampere University Hospital. These comprised patient demographics, treatment course and polysomnography-confirmed sleep-disordered breathing (SDB). Results: There were 93 patients (63.4% boys). The median age at treatment initiation was 8.4 (range 0.11-16.9) years. The patients had: neuromuscular disease (16.1%), central nervous system disease (14.0%), developmental disabilities and congenital syndrome (29.0%), lung-airway conditions (11.8%), craniofacial syndrome (15.1%) and severe obesity (14.0%). More than two-thirds had severe SDB (66.7%) and the most common one was obstructive sleep apnoea in 66.7%. We found that 92.5% received long-term therapy for more than 3 months and the mean treatment duration was 3.3 ± 2.7 years. A non-invasive mask interface was used in 94.7% of cases and 5.3% needed tracheostomy ventilation. More than a quarter (26.7%) achieved disease resolution during the study period. Conclusion: Most children who needed long-term home respiratory support had complex conditions and severe, persistent SDB.
Jarvela M; Katila M; Eskola V; Makinen R; Mandelin P; Saarenpaa-Heikkila O; Lauhkonen E
Acta Paediatrica
2024
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<a href="http://doi.org/10.1111/apa.16981" target="_blank" rel="noreferrer noopener">10.1111/apa.16981</a>
Investigation of the impact of paediatric hospices on the quality of care of paediatric nurses
child; adult; female; human; male; Hospices; young adult; hospice; nurse; questionnaire; hospice care; pediatric nursing; pediatric nurse
BACKGROUND: The establishment of paediatric hospices improves the quality of care of paediatric nurses. AIM: To examine the effect of establishing paediatric hospices on the quality of care of paediatric nurses. <br/>METHOD(S): Data was collected between 22 October 2022 and 25 February 2023. An online survey method was used to collect sociodemographic data and paediatric hospice data for paediatric nurses and a scale was used to determine the opinions of nurses working in the field of paediatrics. A total of 300 paediatric nurses who voluntarily participated in the collection of the research data were selected with the convenience sampling method, with written consent. SPSS 26.0 data analysis programme was used in the statistical analysis of the data obtained in the study, and Independent Sample t-test and ANOVA analysis were used in the analysis of the data. FINDINGS: Of the participating paediatric nurses, 60.9% were women, 39.1% were men, 41.1% were married, 65.9% were between the ages of 22-33, and 71.6% worked at a paediatric hospice. There was no significant difference in paediatric hospice scale scores according to sociodemographic variables such as gender, age, marital status, education level and the health institution worked by paediatric nurses (p>.05). There was a significant difference in paediatric hospice scale scores according to hospice information. It was determined that the establishment of paediatric hospices had an effect on the quality of care (p<.01). <br/>CONCLUSION(S): Paediatric nurses felt that the establishment of paediatric hospices would improve the quality of care of children at the end of life. It is recommended that applications and studies on the establishment and structuring of paediatric hospices should be carried out by expanding the samples, not only in the field of paediatric nursing, but also in all nursing fields.
Hayli CM; Kosem DD; Bor NA
International Journal of Palliative Nursing
2024
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<a href="http://doi.org/10.12968/ijpn.2024.30.1.20" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2024.30.1.20</a>
PRECIOUS demonstrated satisfactory measurement properties for assessing the quality of care for children with serious illnesses
child; adult; article; female; human; major clinical study; male; palliative therapy; hospitalization; follow up; adolescent; therapy; caregiver support; correlation coefficient; psychometry; Cronbach alpha coefficient; internal consistency; person centered care; convergent validity; exploratory factor analysis; root mean squared error; test retest reliability
Objective: To determine the measurement properties of PRECIOUS, a parent-reported measure of Quality of Care (QoC) for seriously ill children across care settings and illness trajectories. Study design and setting: Parents self-administered baseline and two-week follow-up surveys online. Exploratory Factor Analysis (EFA) was used to determine PRECIOUS's factor structure and select items. Internal consistency was evaluated with Cronbach's α, test-retest reliability with intraclass correlation coefficients (ICCs), and convergent validity with Spearman's correlations between PRECIOUS scales and subscales of Measure of Processes of Care (MPOC-20) and Quality of Children's Palliative Care Instrument (QCPCI). Results: Of 152 parents [108 (71%) mothers, 44 (29%) fathers] who completed the baseline survey, 123 (81%) completed follow-up. EFA grouped PRECIOUS into 5 scales: Collaborative and goal-concordant care (12 items), Caregiver support and respectful care (15 items), Access to financial and medical resources (5 items), Reducing caregiving stressors (9 items), and Hospitalization-specific processes (4 items). Root Mean Square Error of Approximation was 0.040 and Comparative Fit Index was 0.980. Cronbach's α ranged from 0.85 to 0.96. ICCs ranged from 0.72 to 0.86. Significant correlations with MPOC-20 and QCPCI confirmed convergent validity. The original 56-item tool was reduced to 45-items. Conclusion: PRECIOUS demonstrates satisfactory measurement properties for assessing QoC for seriously ill children.
Ang FJL; Bun Cheung Y; Gandhi M; Ostbye T; Malhotra C; Malhotra R; Cristelle Chow CT; Heng Chong P; Amin Z; Teresa Tan SZ; Tewani K; Hanim Buang SN; Finkelstein EA
Journal of Clinical Epidemiology
2024
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<a href="http://doi.org/10.1016/j.jclinepi.2024.111286" target="_blank" rel="noreferrer noopener">10.1016/j.jclinepi.2024.111286</a>
Qualitative Study of Nurses' Experiences as They Learned to Provide Neonatal Palliative Care
neonatal intensive care unit; newborn intensive care; nurse; nursing education; palliative therapy; qualitative research; adult; article; Canadian; clinical article; curriculum; female; human; immersion; Infant Newborn; interview; male; meaning-making; neonatal nurse; newborn; Palliative Care; thematic analysis; therapy
Objective: To describe the experiences of nurses as they learned to provide palliative care in the NICU. Design: Interpretive description. Setting: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers. Participants: Nine NICU nurses with 3 to 21 years of experience who provided neonatal palliative care. Methods: We collected data using online interviews that we recorded and transcribed. We analyzed data using immersion, inductive coding, reflective memoing, and thematic analysis. Results: Participants received little or no formal education in neonatal palliative care and instead learned to provide this care through observation and experience. Participants said it was important to find meaning in their work, which contributed to their motivation to learn to provide high-quality neonatal palliative care. Participants described challenges, including unit cultures in which early palliative care was not embraced. We identified three overarching themes that represented the participants' experiences: Meaning-Making in Neonatal Palliative Care, Challenges in Providing Neonatal Palliative Care, and Ill-Prepared to Provide Neonatal Palliative Care. Conclusion: Standardized education may improve the quality of care and nurses' experiences with neonatal palliative care. We recommend designing and evaluating a standardized curriculum on neonatal palliative care.
St Louis J; Raffin-Bouchal S; Benzies K; Sinclair S
Journal of Obstetric, Gynecologic, and Neonatal Nursing
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jogn.2023.12.005" target="_blank" rel="noreferrer noopener">10.1016/j.jogn.2023.12.005</a>
Parents' experiences of palliative care decision-making in neonatal intensive care units: An interpretative phenomenological analysis
decision making; medical ethics; neonatal intensive care unit; newborn intensive care; palliative therapy; parent; qualitative research; ambivalence; article; clinical article; father; female; human; Infant Newborn; Intensive Care Units; interview; life sustaining treatment; male; meaning-making; shared decision making
Aim: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. Methods: Audio-recorded face-to-face interviews were led and analysed using interpretative phenomenological analysis. Eight families (seven mothers and five fathers) whose baby underwent withholding and/or withdrawing of life-sustaining treatment in three neonatal intensive care units from two regions in France were included. Results: The findings reveal two paradoxes within the meaning-making process of parents: role ambivalence and choice ambiguity. We contend that these paradoxes, along with the need to mitigate uncertainty, form protective psychological mechanisms that enable parents to cope with the decision, maintain their parental identity and prevent decisional regret. Conclusion: Role ambivalence and choice ambiguity should be considered when shared decision-making in the neonatal intensive care unit. Recognising and addressing these paradoxical beliefs is essential for informing parent support practices and professional recommendations, as well as add to ethical discussions pertaining to parental autonomy and physicians' rapport to uncertainty.
SaintDenny K; Lamore K; Nandrino JL; Rethore S; Prieur C; Mur S; Storme L
Acta Paediatrica
2024
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/apa.17109" target="_blank" rel="noreferrer noopener">10.1111/apa.17109</a>
The funding of specialised paediatric palliative care in Switzerland: a conceptualisation and modified Delphi study on obstacles and priorities
Delphi study; funding; modified Delphi study; palliative therapy; pediatrics; Switzerland; adult; aged; article; clinical practice; consensus development; Delphi Technique; evidence based medicine; female; health care cost; health care delivery; health service; human; male; Palliative Care; practice guideline; program effectiveness; program sustainability; reimbursement; Switzerland
BACKGROUND: Effective funding models are key for implementing and sustaining critical care delivery programmes such as specialised paediatric palliative care (SPPC). In Switzerland, funding concerns have frequently been raised as primary barriers to providing SPPC in dedicated settings. However, systematic evidence on existing models of funding as well as primary challenges faced by stakeholders remains scarce. AIMS: The present study’s first aim was to investigate and conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. Its second aim was to identify obstacles to and priorities for funding these programmes sustainably. METHODS: A 4-step process, including a document analysis, was used to conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. In consultation with a purposefully selected panel of experts in the subject, a 3-round modified Delphi study was conducted to identify funding-relevant obstacles and priorities regarding SPPC. RESULTS: Current funding of hospital-based consultative specialised paediatric palliative care programmes is complex and fragmented, combining funding from public, private and charitable sources. Overall, 21 experts participated in the first round of the modified Delphi study, 19 in round two and 15 in round three. They identified 23 obstacles and 29 priorities. Consensus (>70%) was obtained for 12 obstacles and 22 priorities. The highest level of consensus (>90%) was achieved for three priorities: the development of financing solutions to ensure long-term funding of SPPC programmes; the provision of funding and support for integrated palliative care; and sufficient reimbursement of inpatient service costs in the context of high-deficit palliative care patients. CONCLUSION: Decision- and policy-makers hoping to further develop and expand SPPC in Switzerland should be aware that current funding models are highly complex and that SPPC funding is impeded by many obstacles. Considering the steadily rising prevalence of children with life-limiting conditions and the proven benefits of SPPC, improvements in funding models are urgently needed to ensure that the needs of this highly vulnerable population are adequately met.
Mitterer S; Zimmermanna K; Fink G; Simon M; Gerber AK; Bergstrasser E
Swiss Medical Weekly
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.57187/s.3498" target="_blank" rel="noreferrer noopener">10.57187/s.3498</a>
Ethical, Cultural, Social, and Individual Considerations Prior to Transition to Limitation or Withdrawal of Life-Sustaining Therapies
decision making; ethics; child; child parent relation; critical illness/th [Therapy]; female; human; male; patient participation; pediatric intensive care unit; psychology; social media; terminal care; transcultural care; treatment withdrawal
As part of the invited supplement on Death and Dying in the PICU, we reviewed ethical, cultural, and social considerations for the bedside healthcare practitioner prior to engaging with children and families in decisions about limiting therapies, withholding, or withdrawing therapies in a PICU. Clarifying beliefs and values is a necessary prerequisite to approaching these conversations. Striving for medical consensus is important. Discussion, reflection, and ethical analysis may determine a range of views that may reasonably be respected if professional disagreements persist. Parental decisional support is recommended and should incorporate their information needs, perceptions of medical uncertainty, child's condition, and their role as a parent. Child's involvement in decision making should be considered, but may not be possible. Culturally attuned care requires early examination of cultural perspectives before misunderstandings or disagreements occur. Societal influences may affect expectations and exploration of such may help frame discussions. Hospital readiness for support of social media campaigns is recommended. Consensus with family on goals of care is ideal as it addresses all parties' moral stance and diminishes the risk for superseding one group's value judgments over another. Engaging additional supportive services early can aid with understanding or resolving disagreement. There is wide variation globally in ethical permissibility, cultural, and societal influences that impact the clinician, child, and parents. Thoughtful consideration to these issues when approaching decisions about limitation or withdrawal of life-sustaining therapies will help to reduce emotional, spiritual, and ethical burdens, minimize misunderstanding for all involved, and maximize high-quality care delivery.
Kirsch RE; Balit CR; Carnevale FA; Latour JM; Larcher V
Pediatric Critical Care 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/10.1097/PCC.0000000000001488" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001488</a>
Thirty-day mortality as a metric for palliative radiotherapy in pediatric patients
mortality; palliative therapy; pediatric patient; adult; article; biological marker; child; female; human; male; Metronidazole; patient care; patient referral; quality of life; radiotherapy; Radiotherapy; terminally ill patient
Purpose of review: Thirty-day mortality (30DM) is an emerging consideration for determining whether terminally ill adult patients may benefit from palliative radiotherapy (RT). However, the efficacy and ethics of delivering palliative RT at the end of life (EOL) in children are seldom discussed and not well-established. Recent findings: Palliative RT is perhaps underutilized among patients ≤21 years old with rates as low as 11%. While effective when delivered early, clinical benefit decreases when administered within the last 30 days of life. Pediatric 30DM rates vary widely between institutions (0.7-30%), highlighting the need for standardized practices. Accurate prognosis estimation remains challenging and prognostic models specific to palliative pediatric patients are limited. Discordance between provider and patient/parent perceptions of prognosis further complicates decision-making. Summary: RT offers effective symptom control in pediatric patients when administered early. However, delivering RT within the last 30 days of life may provide limited clinical benefit and hinder optimal EOL planning and care. Early referral for palliative RT, preferably with fewer fractions (five or fewer), along with multidisciplinary supportive care, optimizes the likelihood of maintaining patients' quality of life. Prognosis estimation remains difficult, and improving patient and family understanding is crucial. Further research is needed to refine prognostic models and enhance patient-centered care.
Keit E; Nanda R; Johnstone PAS
Current Opinion in Supportive and Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/SPC.0000000000000686" target="_blank" rel="noreferrer noopener">10.1097/SPC.0000000000000686</a>
Discussing Death as a Possible Outcome of PICU Care
attitude to death; death; child; critical illness; decision making; doctor patient relationship; family; female; human; interpersonal communication; male; pediatric intensive care unit; physician; psychology; risk assessment; terminal care; uncertainty
OBJECTIVES: To describe practical considerations related to discussions about death or possible death of a critically ill child. DATA SOURCES: Personal experience and reflection. Published English language literature. STUDY SELECTION: Selected illustrative studies. DATA EXTRACTION: Not available. DATA SYNTHESIS: Narrative and experiential review were used to describe the following areas benefits and potential adverse consequences of conversations about risk of death and the timing of, preparation for, and conduct of conversations about risk of death. <br/>CONCLUSION(S): Timely conversations about death as a possible outcome of PICU care are an important part of high-quality ICU care. Not all patients "require" these conversations; however, identifying patients for whom conversations are indicated should be an active process. Informed conversations require preparation to provide the best available objective information. Information should include distillation of local experience, incorporate the patients' clinical trajectory, the potential impact(s) of alternate treatments, describe possible modes of death, and acknowledge the extent of uncertainty. We suggest the more factual understanding of risk of death should be initially separated from the more inherent value-laden treatment recommendations and decisions. Gathering and sharing of collective knowledge, conduct of additional investigations, and time can increase the factual content of risk of death discussions. Timely and sensitive delivery of this best available knowledge then provides foundation for high-quality treatment recommendations and decision-making.
Gilleland JC; Parshuram CS
Pediatric Critical Care 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/10.1097/PCC.0000000000001557" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001557</a>
Training perinatal nurses in palliative communication by using scenario-based simulation: A quasi-experimental study
interpersonal communication; nurse; palliative therapy; quasi experimental study; simulation; Taiwan; training; article; communication skill; continuing education; controlled study; delivery room; experimental design; female; health care personnel; human; intensive care unit; learning; newborn; purposive sample; registered nurse; structured questionnaire; teaching; terminal disease; therapy
Aim: This study aimed to assess the impact of two educational modules on enhancing the communication confidence, competence and performance of perinatal nurses in the context of palliative care. Background: Concerns have arisen regarding the preparedness of perinatal nurses in delivering palliative care, especially in terms of deficiencies in communication skills and negative attitudes toward making life-support decisions for parents facing neonates with terminal conditions. Bridging this gap necessitates improved perinatal palliative care education for healthcare providers. Research has shown that simulation-based teaching effectively enhances procedural competence, communication skills and confidence among healthcare professionals. However, comprehensive curricula focusing on perinatal palliative communication remain limited. Design: This study used a quasi-experimental design employing a two-group repeated measure approach. It involved a purposive sample of 79 perinatal nurses from a hospital in northern Taiwan. Methods: A palliative communication course specifically designed for registered nurses in perinatal units was developed. Participants were allocated to either the experimental group (Scenario-Based Simulation, SBS) or the control group (traditional didactic lecture). Communication confidence and competence were assessed before and immediately after the course through structured questionnaires. Learning satisfaction was collected post-intervention and participants underwent performance evaluation by standardized parents one week later. Results: A significant training gap in palliative care exists among nurses in OB/GYN wards, delivery rooms and neonatal critical care units, highlighting the need for continuing education. All 79 participants completed the training course. Following the intervention, nurses in the SBS group (n=39) exhibited significant improvements in self-reported confidence (p <0.05), competence (p <0.01) and performance (p <0.001) in neonatal palliative communication compared with the traditional didactic lecture group (n=40). The SBS group also received higher satisfaction ratings from nurse learners (p <0.001). Conclusions: The research findings support scenario-based simulation as a more effective educational approach compared with traditional didactic lectures for enhancing communication confidence and competence. These results were further reinforced by evaluation from standardized patients, highlighting the value of direct feedback in enhancing nurses' performance. Tailoring SBS designs to diverse nursing contexts and incorporating a flipped approach can further enrich the overall learning experience. Given its high effectiveness and positive reception, we recommend integrating this educational module into palliative care training programs for perinatal nurses.
Chen HW; Cheng SF; Hsiung Y; Chuang YH; Liu TY; Kuo CL
Nurse Education in Practice
2024
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.nepr.2024.103885" target="_blank" rel="noreferrer noopener">10.1016/j.nepr.2024.103885</a>
Parents' participation in collegial meetings to discuss withholding or withdrawing treatment for their newborn: Working to improve information-sharing
decision making; life sustaining treatment; parent; adult; advisory committee; child; conference paper; female; follow up; grief; human; Infant Newborn; Information Dissemination; newborn; refusal to participate; retrospective study; terminal care; Withholding Treatment
Aim: The role of parents in decision-making concerning their child's end-of-life care is not clearly defined. Their participation is encouraged by ethical reflection, in particular by the CCNE (French National Ethics Advisory Committee), but laws are limited to imposing a duty to provide information to doctors. Decisions are taken at the end of a collegial meeting (CM) intended to better inform the child's referring physician (RP) who is in charge of the final decision following the French law. The aim of this study was to describe the support provided to bereaved families after they had been invited to attend a CM concerning their child, if they so wished. Additional aims were to determine the differences resulting from their acceptance or their refusal to participate as regards their perception of their child's history and as regards their grieving process. Material and method: We conducted a retrospective study of all CMs held between November 2016 and May 2021, drawing a distinction between proposals made or not made to parents and their decision to accept or refuse. Results: In total, 49 CMs concerning 46 children were held during the study period. The proposal was not made to the parents in three cases; the parents chose to be present in 28 cases. The psychological follow-up (15/28 parents attending, 10/16 parents absent) illustrated that their presence enabled them to reflect on their child's death after having listened to and understood the reasons why it happened. They did not dispute the team's approach or decisions taken. Conclusion: It is possible to include parents in CMs if they so wish. It would appear more beneficial than merely providing them with the information required. Studies must be carried out to ensure potential long-term benefit.
Boize P; Garner Y; Neaud E; Borrhomee S
Archives de Pediatrie
2024
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.arcped.2023.10.004" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2023.10.004</a>
Newborn Care Curriculum: Palliative Care for the Newborn
procedures; adult; curriculum; education; feedback system; female; human; Infant Newborn; male; medical student; neonatal intensive care unit; neonatology; newborn; organization and management; palliative therapy; teaching
Introduction: Because pediatric hospitalists have increasing responsibilities in newborn hospitalization, training in perinatal palliative care is beneficial. A 2015 needs assessment revealed 68% of surveyed pediatric hospitalists were interested in more education on this topic. Thus, this learning module was designed to provide a concise, easy-to-use introduction to palliative care for the newborn. <br/>Method(s): This module was developed as part of the computer-based Newborn Care Curriculum to fill a gap in educational resources on perinatal palliative care. The primary tool in this learning module is a PowerPoint slide show with a script in the notes section. Using the presenter mode to view the PowerPoint slide show allows the learner to simultaneously view the slides and read the script for instruction. This module was tested by members of the pediatric hospitalist division at Children's National Health System in Washington, DC. Participants completed a pretest, posttest, and module evaluation. While tested as a self-study tool, the module may also be used in a small-group teaching setting. <br/>Result(s): The module was well received during the trial. The average posttest score was 96%, compared to pretest scores of 90%. Learners' comments were overwhelmingly positive, and constructive feedback has been addressed. <br/>Discussion(s): This module provides pediatric hospitalists and others who care for newborns with a well-received introduction to perinatal palliative care. The computer-based format of the module adds to its uniqueness and utility.
Anspacher M; Burd A; Stroh J; Conroy R
MedEdPORTAL
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.15766/mep_2374-8265.10639" target="_blank" rel="noreferrer noopener">10.15766/mep_2374-8265.10639</a>
Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study
child; diagnosis; article; female; human; male; social support; palliative therapy; Internet; interview; medical information; physician; health care personnel; therapy; caregiver; semi structured interview; case study; nurse; child health; Hong Kong
Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured interviews was employed with a within-case and across-case analysis. Themes and subthemes emerging from the cases were compared and contrasted in the across-case analysis to explore the similarities and variations in participant perceptions. Setting/participants: The setting was the paediatric departments of five regional hospitals in Hong Kong. Twenty-five sets of informants (CLLC-parent-healthcare provider) were recruited, with 65 individual interviews conducted. Results: A total of 3784 units of analysis were identified, resulting in three themes with subthemes. 'Living with the disease' (55.8%) occupied the largest proportion, followed by 'information and understanding about the disease' (27.4%), and 'care support and palliative care' (16.8%). Healthcare provider support mainly focused on physical concerns. Family and social support were present, but carer stress created tension between couples. Doctors were the primary source of medical information, but the parents had to seek further information via the internet and support from patient groups. There was a perceived need for better coordination and collaboration of care. The palliative care approach coordinated by nurses was seen as helpful in addressing the care needs of the CLLC.
Wong FKY; Ho JMC; Lai TC; Lee LPY; Ho EKY; Lee SWY; Chan SCW; Fung CW; Ho ACH; Li CH; Li CK; Chiu ATG; Tsui KW; Lam KKW
Archives of Disease in Childhood
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2023-325810" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-325810</a>
Evaluating quality of life in pediatric palliative care: a cross-sectional analysis of children's and parents' perspectives
child; article; female; human; male; perception; palliative therapy; quality of life; clinical article; parent; cross-sectional study; adolescent; voice; drug therapy; nonparametric test; psychologic assessment; disease management; special situation for pharmacovigilance; sociodemographics
The patient's perspective is an essential component of understanding the individual experience of suffering in children with palliative needs, but it is a perspective that is often overlooked. The aim of this study was to compare the perception of quality of life (QoL) of children with life-limiting and life-threatening conditions expressed by the children themselves and their parents. Through a cross-sectional study, the responses of 44 parent-child dyads were obtained and the analysis was performed with the statistics based on Student's t distribution and non-parametric tests. Children value QoL more positively (mean = 6.95, SD = 1.85) than their parents (mean = 5.39, SD = 2.43). This difference exists even if we consider sociodemographic and disease variables. The presence of exacerbated symptoms is the situation in which both parents (mean = 3.70; SD = 1.95) and children (mean = 5.60; SD = 1.17) evaluate QoL more negatively. Conclusions: Children have a more optimistic view than their parents. When the child is the one who reports a lower QoL score than their parent, the child should be carefully monitored. The voice of the child and that of the family members can be collected to create a "family voice" and can be complementary. What is known: • Children with life-limiting conditions experience multiple and changing symptoms that affect their QoL. • The child's perspective is often overlooked. What is new: • Children value QoL more positively than their parents do, even if we control for sociodemographic variables and the disease itself. • When the child is the one who reports a lower QoL score than their parent, the child should be carefully monitored.
Toro-Perez D; Limonero JT; Guillen M; Bolance C; Vilarrubi SN; Camprodon-Rosanas E
European Journal of Pediatrics
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00431-023-05330-4" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-05330-4</a>
Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic
child; Canada; terminal care; article; controlled study; female; human; male; chronic disease; social support; palliative therapy; interview; parental attitude; health care policy; health care access; health service; adolescent; infant; physical activity; public health; qualitative research; coping behavior; coronavirus disease 2019; risk assessment; health status; personal experience; bereavement support; health care facility; family support; pandemic; infection control
Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. Results: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. Conclusion: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.
Rapoport A; Nicholas DB; Zulla RT
BMC Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-023-01280-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01280-8</a>
Palliative Care in Children with Inherited Metabolic Diseases: Why does it matter?
child; article; cohort analysis; female; hospital admission; human; male; retrospective study; palliative therapy; intensive care; hospitalization; follow up; medical device; school child; home care; enteric feeding; patient referral; neurologic disease; noninvasive ventilation; communication disorder; motor dysfunction; drug combination; metabolic disorder; emergency ward; symptom assessment; place of death; bereavement support; emotional support; respiratory equipment
Background: Inherited metabolic diseases (IMD) bring considerable burden on the child and family. Challenging areas for health care include the identification of distressing symptoms, prognostic uncertainty, and bereavement. Literature regarding the impact of paediatric palliative care (PPC) is scarce. Objective: This study aims to evaluate children with IMD referred to a PPC team (PPCT) and to analyse its impact on home care, decision to limit treatment (DLT), use of hospital resources (emergency department admissions - EDA, hospital admissions - HA, intensive care admissions - ICA) and end of life support. Methods: Retrospective cohort study of children with IMD referred to a specialized PPCT (2016-2022). We assessed clinical data: symptoms control, time of referral and length of the follow-up period, DLT, device dependency, use of hospital resources prior to and after referral, place of death and end-of-life support. Results: Fifteen children with IMD were referred to PPCT (8% of total referrals), with median age of 7 years (4 months - 17 years); 53% female. All children were non or pre-verbal. Most prevalent symptoms were neurologic and motor impairment (100%), respiratory and gastrointestinal (75%). 80% had tube feeding, 90% had some respiratory device (non-invasive ventilation in 23%). All children had multidrug use, with a mean of 6 drugs per child (2-9). 73% had home PPC and 80% had DLT planned. Nine children died (78% in hospital), after a mean of 17 months of follow-up (2 months to 4 years), all with DLT planned. 67% had support from PPCT at the end of life. All these families received emotional support. Decrease in EDA (10 vs 2) was noticed before and after PPCT. No impact was seen in HA and ICA (6 vs 5 and 1 vs 1, respectively) and there was a longer mean of hospitalisation stay (15 vs 32 days). Conclusion: Our cohort includes a group of children with severe, complex and neurodegenerative IMD. They need multiple medications for symptoms control, are highly dependent on medical devices and consume significant healthcare resources. Communication impairment adds complexity being a major barrier to symptom assessment. PPCT referral allowed home support, anticipated care plans development with end of life and bereavement support, as well as a tendency towards a reduction in EDA. These findings reinforce the need for holistic approach to identify and address the PPC needs of children with IMD.
Pereira MJ; Nogueira A; Grilo E; Ferreira S; Diogo L; Cancelinha C
Endocrine, Metabolic and Immune Disorders - Drug Targets
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.2174/0118715303278702231019093844" target="_blank" rel="noreferrer noopener">10.2174/0118715303278702231019093844</a>
What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis
child; disability; article; controlled study; female; human; male; palliative therapy; preschool child; child parent relation; aged; interview; parent; interpersonal communication; school child; intellectual impairment; qualitative research; side effect; hospital care; adolescent; health care system; drug therapy; semi structured interview; adverse drug reaction; patient safety; pediatric hospital; thematic analysis; special situation for pharmacovigilance; kindness
Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. Design, setting and participants: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. Results: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. Conclusions: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. Patient and public contribution: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.
Ong N; Lucien A; Long J; Weise J; Burgess A; Walton M
Health Expectations
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/hex.13925" target="_blank" rel="noreferrer noopener">10.1111/hex.13925</a>
Implementing Palliative care, based on family-centered care, in a highly complex neonatal unit
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; terminal care; prognosis; neonatal intensive care unit; newborn death; congenital malformation; observational study; mortality; transitional care; cause of death; intimacy
Objective To describe the causes and circumstances of neonatal mortality and determine whether the implementation of a palliative care protocol has improved the quality of end-of-life care. Methods A retrospective observational study including all patient mortalities between January 2009 and December 2019. Cause of death and characteristics of support during the dying process were collected. Two periods, before and after the implementation of a palliative care protocol, were compared. Results There were 344 deaths. Congenital malformations were the most frequent cause of death (45.6 %). Most patients died after the transition to palliative care (74.4 %). The most frequently cited criteria for initiating transition of care was poor neurocognitive prognosis (47.2 %). Parents accompanied their children in the dying process in 72 % of cases. Twenty-three percent of patients died outside the Neonatal Intensive Care Unit after being transferred to a private room to enhance family intimacy. After the addition of the palliative care protocol, statistically significant differences were observed in the support and patient experience during the dying process. Conclusions The most frequent causes of death were severe congenital malformations. Most patients died accompanied by their parents after the transition to palliative care. The implementation of a palliative care protocol helped to improve the family-centered end-of-life care.
Morillo PA; Clotet CJ; Camprubi CM; Blanco DE; Silla GJ; Riverola de Veciana A
Jornal de Pediatria
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jped.2023.09.009" target="_blank" rel="noreferrer noopener">10.1016/j.jped.2023.09.009</a>
Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria: Improving Prenatal Palliative Care Consultation through Quality Improvement
child; diagnosis; article; controlled study; female; human; palliative therapy; consultation; outcome assessment; congenital malformation; patient referral; eligibility; pregnancy; total quality management
Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal PPC consultation using a diagnostic trigger list. Measures: Main outcome measure was the percentage of prenatal PPC consults completed based on diagnostic trigger list eligibility. Balancing measures included stakeholder perspectives on PPC consults and products. Intervention: Interventions included creation and implementation of a diagnostic trigger list for prenatal PPC consultation, educational initiatives with stakeholders, and iterative modifications of our prenatal consultation process. Outcomes: Interventions increased consultation rates ≥80% during the first six months of QI implementation (baseline vs. post-interventions) although this increase was not consistently sustained over a 12-month period. Conclusions/lessons learned: Diagnostic trigger lists improve initial rates of prenatal PPC consultation and additional interventions are likely needed to sustain this increase.
Lin M; Rholl E; Andescavage N; Ackerman O; Fisher D; Lanzel AF; Mahmood LA
Journal of Pain and Symptom Management
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2023.10.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.10.015</a>
Changes in the End-of-Life Process in Patients with Life-Limiting Diseases through the Intervention of the Pediatric Palliative Care Team
child; article; controlled study; female; human; male; palliative therapy; clinical article; satisfaction; sex difference; adolescent; drug withdrawal; medical record; emotional support; intubation; at home mortality
Kyungpook National University Children's Hospital initiated pediatric palliative care (PPC) services in January 2019, focusing on children and adolescents with life-limiting conditions (LLC). A study examined changes in the end-of-life processes in patients with LLC before and after a PPC intervention. This study included 48 deceased patients under 18 years at the hospital, divided into two groups: January 2015 to December 2016 without PPC (25 patients, Period 1) and January 2019 to April 2022 with PPC (23 patients, Period 2). Analysis of medical records revealed the following: no age/sex differences; more active advanced care planning in Period 2 (15/23 vs. 7/25, p = 0.01); discussing withholding/withdrawing treatment increased in Period 2 (91.3% vs. 64.0%, p = 0.025); intubation and CPR were less frequent in Period 2 (intubation 2/23 vs. 19/25, p = 0.000; CPR 3/23 vs. 11/25, p = 0.018); Period 1 had more deaths in the ICU (18/25 vs. 10/23, p = 0.045); and 3 patients in Period 2 chose home deaths. A survey in Period 2 revealed high satisfaction with emotional support (91.7%), practical assistance (91.6%), and symptom management (83.3%). PPC facilitated discussions on advanced care planning and treatment choices, ensuring peaceful and prepared farewells for children with LLC and their families.
Kwon JE; Kim YH
Journal of Clinical Medicine
2023
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<a href="http://doi.org/10.3390/jcm12206588" target="_blank" rel="noreferrer noopener">10.3390/jcm12206588</a>
Implementation of an Innovative Palliative Care Screening Tool in the Pediatric Intensive Care Unit: A Pilot Study
child; article; controlled study; female; human; major clinical study; male; chronic disease; palliative therapy; comorbidity; pilot study; pediatric intensive care unit; congenital malformation; intensive care; prospective study; tertiary health care
Background: Pediatric palliative care (PPC) can improve the quality of care provided to critically ill children with a high risk of morbidity and mortality. Early identification of patients admitted to the pediatric intensive care unit (PICU) who may benefit from PPC involvement is essential. Objectives: To create a brief screening tool, the Pediatric Intensive Care-Pediatric Palliative Care Screen, identifying PICU patients most likely to benefit from PPC involvement and to assess if weekly screening with this screening tool increases the number of PPC consults placed in the PICU. Methods: This is a prospective investigational single-center study in a 24-bed PICU at a U.S. tertiary care children's hospital. Weekly screening was completed by two clinicians for a six-month period between April and October 2022. Results: A total of 162 screens were completed on 124 individual patients; 47 screens were positive (29%), and 115 were negative (71%). Fourteen new PPC consults were placed from the PICU with one PPC consult for every 36.7 compared with one PPC for every 41.4 admissions the previous year. Of the positive screens, 68% had two or more comorbidities at the time of PICU admission versus 26% of negative screens (p < 0.001). Technology dependence (57% vs. 5%, p < 0.001) and presence of congenital defects (26% vs. 10%, p = 0.013) were significantly more common among positive screens. Conclusions: Weekly screening with a short, 7-question screening tool can identify PICU patients most likely to benefit from a PPC consult. Patients with chronic illnesses and baseline comorbidities are most likely to screen positive.
Hodge CH; Kerris EW; Freeman MC; Eckman ST; Deeter DM; Even KM
Journal of Palliative Medicine
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2023.0292" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0292</a>
The Relationship Between Dyspnea Severity with Radiological and Laboratory Findings in Pneumonia in Children in Pediatric Palliative Care
child; article; female; human; major clinical study; male; cerebral palsy; epilepsy; palliative therapy; hospitalization; respiratory distress; medical device; assisted ventilation; genetic disorder; social worker; scoring system; cross-sectional study; caregiver; pediatrician; physiotherapist; nurse; X ray; bronchopneumonia; nutritional support; dyspnea; laboratory diagnosis; pneumonia/di [Diagnosis]; radiodiagnosis; atrophy; bacterial pneumonia; bone development; breathing muscle; interstitial pneumonia; modified Borg dyspnea scale; thorax radiography; virus pneumonia
In care patients; pneumonia is common due to being bedridden, atrophy of respiratory muscles and use of medical devices. Dyspnea is the second most common symptom after pain in pediatric palliative care. In this study, it was aimed to examine the relationship between the severity of dyspnea and pneumonia. The study is a study that included patients admitted to pediatric palliative care, diagnosed with pneumonia, and applied Modified Borg Scale (MBS) between December 15, 2019 and December 15, 2020. The MBS has a scoring system ranging from 0 to 10 and assesses the severity of dyspnea. A total of 72 (34.4%) patients diagnosed with pneumonia and underwent MBS were included in the study. 51.4% (n=37) of the study group were male, and the median age was 6.00 years (ranges of quarters=9). It was observed that the severity of dyspnea did not affect determining the pneumonia type and possible pathogen (p=0.613, p=0.948, respectively) In line with the results of the study, it can be concluded that there is no relationship between the severity of dyspnea and pneumonia in patients in need of care.
Harputluoglu N; Coskun M; Cubukcu D; Celik T
Journal of Pediatric Academy
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.4274/jpea.2023.198" target="_blank" rel="noreferrer noopener">10.4274/jpea.2023.198</a>
Optimizing resource utilization: Palliative care consultations in critically ill pediatric trauma patients
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; pediatric intensive care unit; school child; consultation; clinical feature; practice guideline; surgery; adolescent; infant; critically ill patient; intensive care unit; electronic medical record; traumatic brain injury; toddler; child abuse; total quality management; special situation for pharmacovigilance; childhood trauma; injury
The American College of Surgeons Trauma Quality Improvement Program (TQIP) and Committee on Trauma released a best practice guideline for palliative care in trauma patients in 2017. Utilization of pediatric palliative care services for pediatric trauma patients has not been studied. We sought to identify patients who received the consultation and develop criteria for patients who would benefit from these resources at our institution. Methods: The institutional pediatric trauma registry was queried to identify all admissions age 0-17 years old to the pediatric intensive care unit (PICU) or trauma ICU (TICU) from 2014 to 2021. Demographic and clinical features were obtained from the registry. Electronic medical records were reviewed to identify and review consultations to the ComPASS team. A clinical practice guideline (CPG) for palliative care consultations was developed based on the TQIP guideline and applied retrospectively to patients admitted 2014-2021. The CPG was then prospectively applied to patients admitted from March through November 2022. Results: A total of 399 patients were admitted to the PICU/TICU. There were 30 (7.5%) deaths, 20 (66.7%) within 24 hours of admission. Palliative care consultations were obtained in 21 (5.3%). Of these, 10 (47.6%) patients were infants/toddlers <age 2 years, all had traumatic brain injury, 3 (14.3%) were for suspected child abuse, and many were for "goals of care" or family meetings. When the CPG was applied retrospectively, 109 (27.3%) patients met criteria for consultation. After 8 months of prospective implementation of this CPG, palliative care consultation was obtained in 25% (7 of 28) of pediatric trauma patients admitted to the ICU. Conclusion: Our results demonstrate underused potential of the palliative care team to impact the hospital course of critically ill pediatric trauma patients. Ongoing studies will analyze the utility of CPG implementation for early involvement of palliative services in critically ill pediatric trauma patients. Level of evidence: Level III (retrospective cohort).
Goswami J; Baxter J; Schiltz BM; Elsbernd TA; Arteaga GM; Klinkner DB
Trauma Surgery and Acute Care Open
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/tsaco-2023-001143" target="_blank" rel="noreferrer noopener">10.1136/tsaco-2023-001143</a>
Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis
child; diagnosis; article; female; human; male; palliative therapy; clinical article; content analysis; caregiver; parent; school child; care behavior; social media; father; secondary analysis; needs assessment; special situation for pharmacovigilance
The demands of caring for a child with a life-limiting condition can have a profound impact on parents' health and wellbeing. Currently, there is no standard procedure for identifying and addressing the support needs of these parents. Aim: To assess the suitability of the Carer Support Needs Assessment Tool (CSNAT (Paediatric)) for use with parents of children with a life-limiting condition. Design: Secondary qualitative content analysis of two qualitative datasets exploring the health, wellbeing and experiences of support of mothers and fathers of children with a life-limiting condition. Setting: A total of 30 mothers and 12 fathers were recruited via four UK children's hospices and social media. Results: Parental experiences of support mapped onto the existing domains of the CSNAT (Paediatric). One aspect of their experience, surrounding their child's educational needs, went beyond the existing domains of the CSNAT. An adapted version of the tool CSNAT (Paediatric) should include this domain. Conclusion: The CSNAT (Paediatric) is a relevant tool for the assessment of parental support needs. Further research should assess the acceptability and feasibility of implementation of the broader intervention: CSNAT-I (Paediatric).
Fisher V; Atkin K; Ewing G; Grande G; Fraser LK
Palliative Medicine
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163231214471" target="_blank" rel="noreferrer noopener">10.1177/02692163231214471</a>
Withholding life support for children with severe neurological impairment: Prevalence and predictive factors prior to admission in the PICU
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; intensive care unit; assisted ventilation; pediatric intensive care unit; intensive care; therapy; pediatrician; prevalence; functional status; disability; special situation for pharmacovigilance
Our study aimed to evaluate the prevalence and predictive factors of withholding life support for children suffering from severe neurological impairment before admission to the pediatric intensive care unit (PICU). Method: Children under 18 years of age with severe neurological impairment, who were hospitalized between January 2006 and December 2016, were included in this retrospective study. They were allocated to a withholding group or a control group, depending on whether life support was withheld or not, before admission to the PICU. Results: Overall, 119 patients were included. At admission to the PICU, the rate of withholding life support was 10 % (n = 12). Predictive factors were: (1) a previous stay in the PICU (n = 11; 92 %, p<0.01, odds ratio [OR]: 14 [2-635], p = 0.001); (2) the need for respiratory support (n = 5; 42 %, p = 0.01, OR: 6 [1-27], p = 0.01); (3) the need for feeding support (n = 10; 83 %, p = 0.01, OR: 10 [2-100], p = 0.001); and (4) a higher functional status score (FSS: 16 [12.5-19] vs. 10 [8-13], p<0.01). Conclusion: The withholding of life support for children suffering from severe neurological impairment appeared limited in our pediatric department. The main predictor was at least one admission to the PICU, which raised the question of the pediatrician's role in the decision to withhold life support.
Duval C; Porcheret F; Toulouse J; Alexandre M; Roulland C; Viallard ML; Brossier D
Archives de Pediatrie
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.arcped.2023.09.014" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2023.09.014</a>
Understanding Adult Hospices Caring for Children in California, 2018-2021
child; adult; article; female; human; male; retrospective study; economics; care behavior; nurse; hospice care; medicaid; California; home health agency; latitude; longitude; urban population
In areas where there are absences of pediatric hospice care, adult hospices are often asked to provide hospice care for children. Little is known about these adult hospices. The purpose of our study was to describe the characteristics of adult hospices in California that provided care to children from 2018 to 2021. Using public data from the California Home Health Agencies and Hospice Annual Utilization Report, we conducted a longitudinal, retrospective descriptive study to examine the effects of hospice characteristics on adult hospices which provide care to children. Market, mission, operational, and financial characteristics were measured via the California utilization data using descriptive statistics. Service area was measured via latitude and longitude public data. Hospice location maps were generated for year 2018 and year 2021. The 148 hospices in the study had distinct organizational profiles, mainly small, with broad service coverage areas, in rural and urban communities with predominantly nurses visiting children. There was a significant decline (32%) in availability of adult hospices caring for children between 2018 and 2021, particularly in northern California. Hospice economics, lack of familiarity with Medicaid, and staff comfortability with caring for children in hospice, were not driving this decline. Our study provides critical insight into the characteristics of adult hospices in California providing care for children and has important policy implications.
Davis HA; Weaver MS; Torkildson C; Lindley LC
American Journal of Hospice and Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10499091231204941" target="_blank" rel="noreferrer noopener">10.1177/10499091231204941</a>
Lactation Support as a Proxy Measure of Family-Centered Care Quality in Neonates with Life-Limiting Conditions-A Comparative Study
article; cohort analysis; controlled study; female; hospital admission; human; major clinical study; male; retrospective study; cerebral palsy; gestational age; comparative study; hospital discharge; congenital heart disease; genetic disorder; seizure; neurologic disease; lung disease; neonatal intensive care unit; clinical assessment; mortality; infant; kidney disease; extracorporeal oxygenation; health disparity; cognitive defect; length of stay; gastrointestinal disease; do not resuscitate order; breast feeding; hypoxic ischemic encephalopathy; family centered care; sensory dysfunction; incurable disease; lactation; life limiting condition; breast pump; donor milk; learning disorder; nutritional deficiency
Lactation support is an important measure of Family-Centered Care (FCC) in the Neonatal Intensive Care Unit (NICU). Life-limiting conditions (LLCs) raise complex ethical care issues for providers and parents in the NICU and represent a key and often overlooked population for whom FCC is particularly important. We investigated healthcare disparities in FCC lactation support quality in infants with LLCs. Methods: A retrospective cohort of inborn infants with or without LLCs admitted to the NICU between 2015-2023 included 395 infants with 219 LLC infants and 176 matched non-LLC infants and were compared on LLC supports. Results: The LLC cohort experienced greater skin-to-skin support, but less lactation specialist visits, breast pumps provided, and human milk oral care use. LLC infants also experienced less maternal visitation, use of donor milk (LLC: 15.5%, non-LLC: 33.5%), and breastfeeds (LLC: 24.2%, non-LLC: 43.2%), with lower mean human milk provision (LLC: 36.6%, non-LLC: 67.1%). LLC infants who survived to discharge had similar human milk use as non-LLC infants (LLC: 49.8%, non-LLC: 50.6%). Conclusion: Lactation support was significantly absent for families and infants who presented with LLCs in the NICU, suggesting that policies can be altered to increase lactation support FCC quality for this population.
Brito S; Williams A; Fox J; Mohammed T; Chahin N; McCarthy K; Nubayaat L; Nunlist S; Brannon M; Xu J; Hendricks-Munoz KD
Children
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children10101635" target="_blank" rel="noreferrer noopener">10.3390/children10101635</a>
Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years
child; article; female; human; major clinical study; male; palliative therapy; hospice; uncertainty; school child; fetus; retrospective study; medical record review; infant; heart; hospital mortality; trisomy 18; prenatal period
Perinatal palliative care is an emerging branch of children's palliative care. This study sought to better understand the pattern of antenatal referrals and the role of a specialist paediatric palliative care (PPC) team in supporting families throughout the antenatal period. Methods: A single-centre retrospective chart review of all antenatal referrals to a quaternary children's palliative care service over a 14-year period from 2007 to 2021. Results: One hundred fifty-nine antenatal referrals were made to the PPC team over a 14-year period, with increasing referrals over time. Referrals were made for a broad spectrum of diagnoses with cardiac conditions (29% of referrals) and Trisomy 18 (28% of referrals) being the most prevalent. 129 referrals had contact with the PPC team prior to birth and 60 had a personalised symptom management plan prepared for the baby prior to birth. Approximately one third (48/159) died in utero or were stillborn. Only a small number of babies died at home (n = 10) or in a hospice (n = 6) and the largest number died in hospital (n = 72). 30 (19% of all referrals) were still alive at the time of the study aged between 8 months and 8 years. Conclusions: Specialist PPC teams can play an important role in supporting families during the antenatal period following a diagnosis of a life-limiting fetal condition and demand for this service is increasing. A large proportion of the cases referred will not survive to the point of delivery and a number of babies may survive much longer than predicted. PPC teams can be particularly helpful navigating the uncertainty that exists in the antenatal period and ensuring that plans are made for the full spectrum of possible outcomes.
Bertaud S; Brightley G; Crowley N; Craig F; Wilkinson D
BMC Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-023-01302-5" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01302-5</a>
The burden and scope of childhood cancer in displaced patients in Jordan: The King Hussein Cancer Center and Foundation Experience
child; Neoplasms; childhood cancer; article; female; human; major clinical study; male; social support; palliative therapy; health care cost; follow up; retinoblastoma; cancer patient; overall survival; cancer registry; leukemia; brain tumor; cancer center; refugee; lymphoma; bone sarcoma; Jordanian; public health; Jordan; drug cost; Foundations; Iraqi; Syrian; Yemeni
Introduction: Jordan hosts one of the highest numbers of refugees per capita in the world, with the Syrian crisis leading to an influx of displaced persons to the already vulnerable population. However, limited resources and a lack of cancer-care strategies have made it difficult for refugees in Jordan to access quality cancer care. The King Hussein Cancer Center (KHCC) and Foundation (KHCF) have played a pivotal role in providing financial and medical support for displaced children with cancer, treating 968 non-Jordanian children with cancer between 2011-2022, with a median age of 6 years. Of these, 84% were fully funded by KHCF, and nationalities included Syrians (29%), Palestinians (26%), Iraqis (23%), and Yemenis (17%). Cancer diagnoses included solid tumors (44%), leukemia (23%), lymphoma (13%), bone sarcomas (9.5%), and retinoblastoma (9.1%). The median cost of treatment was JOD 18,000 (USD 25,352), with a total estimated cost of JOD 23.8 million (USD 33.5 million). More recently, in partnership with St. Jude Children's Research Hospital (SJCRH), two successive humanitarian funds (HF) were established to optimize cancer care for displaced children in Jordan.
Results: Between February 2018 and September 2022, 51 children were fully treated on KHCC-SJCRH-HF, with a median age of 6 years and nationalities including Syrians (80%), Iraqis (6%), and Yemenis (8%). The most common cancer diagnoses were leukemia (41%), lymphoma (25%), solid tumors (24%), retinoblastoma (6%), and brain tumors (4%). Of these, 94% are alive and 51% are still receiving coverage. The median coverage for patients was JOD 21,808 (USD 30,715), and the total cost of treatment on KHCC/KHCF-SJCRH/American Lebanese Syrian-Associated Charities HF1 and HF2 was JOD 1.44 million (USD 1.97 million) and JOD 1.18 million (USD 1.67 million), respectively.
Conclusion: This experience highlights the high burden of displaced children with cancer in Jordan, and the importance of local foundations like KHCC/KHCF and partnerships with international partners like SJCRH in providing lifesaving humanitarian initiatives and quality cancer care. Innovative cancer-care delivery models and sustainable financing are essential to ensure continuous coverage and access to cancer care for displaced persons in Jordan.
Rihani R; Jeha S; Nababteh M; Rodriguez-Galindo C; Mansour A; Sultan I
Frontiers in Oncology
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fonc.2023.1112788" target="_blank" rel="noreferrer noopener">10.3389/fonc.2023.1112788</a>
Pediatric Cancer and Palliative Care in Conflict Affected Area
child; Palliative Care; controlled study; female; human; major clinical study; male; palliative therapy; survival rate; pain; awareness; cancer patient; cancer survival; university hospital; opiate; conference abstract; refugee; medical society; health insurance; investment; Turkey (republic); cancer control; hospital bed capacity; Turk (people)
Background/aims: Turkey has a population fo 85 million and also hosts the larger number of refugees with 3,7 million mainly from Syrian. Globocan 2020 data estimates 233,000 new cancer cases and 126,000 deaths due to cancer. By the end of the 90s, the palliative care (PC) services were very limited with lack of trained professionals, low awareness and limited access to opioids. <br/>Method(s): The investments from Professional organizations and goverment started mainly after 2000's but still limited. The first Cancer Control Programme was released by Ministry of health (MoH) in 2008, and implemented the Palliaturk project in 2011, targeting the pain control and community based PC model. PC directive was released in 2015. <br/>Result(s): The International PC scale ranking named Turkey in group 2 in 2006, and moved up to group 3b in 2011, then in group 3a in 2017, which is the isolated PC provision. After the start of Palliaturk project in 2011, the investment continued from the MoH. The number of the beds for palliative cares were increased to 5577 in 2021 which was very low in number before 2014. Turkey also implemented the Universal Health Coverage in 2012, >98% of the population are covered by UHC. In a short survey from the 21 Southern Turkey's major University hospitals, only 8 has palliative care services and 4 has palliative care exclusive staff although providing the PC services. Twelwe was also providing the PC services for refugees. The annual number of new pediatric cancer patients is estimated around 3000 per year, the palliative care services were mainly provided within the oncology services. There were 10 paediatric PC services with 119 bed capacity in 2021 for all pediatric patiens in nation, not specifically for cancer patients. In a recent analysis of cancer in Syrian refugees living in the city of Konya, we reported the 3 year survival rates as 69.5 probably less in 5 years. We also found that the 5 years survival rates was about 30% in Syrian refugee children with cancer living in Southern Turkey. The five years survival rates for Turkish children is about 70%. <br/>Conclusion(s): There is still a need of investment on palliative care services for pediatric cancer patients and integration of PC services to current cancer care is also essential.
Kutluk T
Palliative Medicine
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</a>