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>
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
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.16981" target="_blank" rel="noreferrer noopener">10.1111/apa.16981</a>
The care for oncologic patients undergoing pediatric palliative care and the griefs of a health team
Palliative Care; article; female; human; male; chronic disease; palliative therapy; psychology; anxiety; clinical article; follow up; cross-sectional study; health service; cancer diagnosis; questionnaire; coronavirus disease 2019; pandemic; semi structured interview
Introduction: The health care offered to children and adolescents with cancer has been expanded, giving space to orthothanasia and palliative care, with a comprehensive look at the subject facing the threat to the continuity of life, as well as challenging professionals to access issues related to grief. Objective(s): In order to explore this reality, this study intended to analyze how professionals experience grieving processes in the exercise of palliative care in pediatric oncology. Method(s): A qualitative research was conducted with the participation of 23 health professionals working in palliative oncology and pediatric care, who responded to a semi-structured interview script, whose analyses were performed with the support of the IRaMuTeQ (Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires) software. Result(s): The results were organized in four classes: in class 1, the specificities of the treatment of children with cancer and other aspects related to chronic illness are portrayed; class 2 shows that health trainings do not prepare professionals to deal with death and with patients with no possibility of cure, and these professionals have (pre-) concepts about palliative care; class 3 highlights the principles of palliative care and other factors of the work in this therapy; and class 4 deals with the bonds formed by professionals and their grieving experiences. Conclusion(s): Cure must not be a requirement for the provision of care in relation to children with cancer that can benefit from the adoption of palliative care therapy and the validation of the sensitivity of professionals.Copyright © 2023, Universidad Compultense Madrid. All rights reserved.
de Sena JGM; Melo CF; de Vasconcelos AV; Teixeira LC; Ruiz EM; Alves RSF
Psicooncologia
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/10.5209/psic.78677" target="_blank" rel="noreferrer noopener">10.5209/psic.78677</a>
Supportive care for cancer-related symptoms in pediatric oncology: a qualitative study among healthcare providers
Canada; United States; Germany; childhood cancer; adult; article; cancer chemotherapy; female; human; male; quality of life; palliative therapy; aged; education; Netherlands; anxiety; philosophy; Norway; clinical article; interview; content analysis; health care personnel; qualitative research; cancer therapy; insomnia; fatigue; acute lymphoblastic leukemia; leukemia; constipation; nausea; semi structured interview; vomiting; alternative medicine; nurse; music therapy; dietitian; acupuncture; aromatherapy; integrative medicine; massage; professional practice; acupressure; play therapy; psychodrama; vincristine
Background: The aim of this study is to gain insight into the clinical experiences and perceptions that pediatric oncology experts, conventional healthcare providers, and complementary and alternative medicine (CAM) providers in Norway, Canada, Germany, the Netherlands, and the United States have with the use of supportive care, including CAM among children and adolescents with cancer. Method(s): A qualitative study was conducted using semi-structured in-depth interviews (n = 22) with healthcare providers with clinical experience working with CAM and/or other supportive care among children and adolescents with cancer from five different countries. Participants were recruited through professional associations and personal networks. Systematic content analysis was used to delineate the main themes. The analysis resulted in three themes and six subthemes. Result(s): Most participants had over 10 years of professional practice. They mostly treated children and adolescents with leukemia who suffered from adverse effects of cancer treatment, such as nausea and poor appetite. Their priorities were to identify the parents' treatment goals and help the children with their daily complaints. Some modalities frequently used were acupuncture, massage, music, and play therapy. Parents received information about supplements and diets in line with their treatment philosophies. They received education from the providers to mitigate symptoms and improve the well-being of the child. Conclusion(s): Clinical experiences of pediatric oncology experts, conventional health care providers, and CAM providers give an understanding of how supportive care modalities, including CAM, are perceived in the field and how they can be implemented as adaptational tools to manage adverse effects and to improve the quality of life of children diagnosed with cancer and the families.Copyright © 2023, The Author(s).
Mora DC; Jong MC; Quandt SA; Arcury TA; Kristoffersen AE; Stub T
BMC Complementary Medicine and Therapies
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/s12906-023-03924-x" target="_blank" rel="noreferrer noopener">10.1186/s12906-023-03924-x</a>
The need of patients living with cancer for palliative care
Health Services Needs and Demand; Palliative Care; Neoplasms; Anxiety; Questionnaires; Adult; Psychometrics; Adolescence; Middle Age; Health Services Accessibility; Aged; Depression; Stress Psychological; Data Analysis Software; Descriptive Research; Human; Descriptive Statistics; Nursing; Self Report; Palliative Care Nursing; Chi Square Test; Jordan; Psychological Distress; Cross Sectional Studies; Patient Attitudes; Convenience Sample; Aged 80 and Over; Cancer Patients; Spiritual Care
Background: A comprehensive assessment of patients' problems and needs is
Alnajar MK; Abdalrahim MS; Mosleh SM; Farhan M; Amro K; Darawad MW
International Journal of Palliative 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/10.12968/ijpn.2023.29.5.236" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2023.29.5.236</a>
Impact of Animal-Assisted Interaction on Anxiety in Children With Advanced Cancer and Their Caregivers
Child; Animals; Anxiety; article; controlled study; female; human; male; Caregivers; patient care; palliative therapy; advanced cancer; caregiver; cancer patient; cancer recurrence; Only Child; nonhuman; dog; animal experiment; animal model; feasibility study; anxiety; pediatric patient; comparative effectiveness; Animal Shells; anticipation; refractory disease; State Trait Anxiety Inventory
Background: Pediatric patients with advanced cancer and their caregivers have unique psychosocial needs. Anxiety often worsens throughout treatment for both patients and parents, and, if undertreated, can cause suffering. Animal-assisted interaction (AAI) incorporates animals into patient care in a structured manner for the purpose of therapeutic benefit. Objective(s): To evaluate feasibility of incorporating AAI into patient care and to assess AAI effectiveness in decreasing patient and caregiver anxiety in pediatric patients with advanced cancer, defined by relapsed or refractory disease. Design(s): Randomized controlled study. Setting/Subjects: Participants were children (n=19) and parents (n=21) who were randomized to AAI group or usual care (UC) group. Measures: Participants completed weekly measures to assess anxiety, including the 20-question State-Trait Anxiety Inventory (STAI). Result(s): Our results demonstrated feasibility of the use of AAI in children with advanced cancer. While they did not reveal a significant difference in anxiety scores over the four sessions in either group, parents randomized to the AAI group had lower STAI State subscores at initial visit in comparison to the UC group. The difference in initial STAI State anxiety scores for caregivers may indicate a positive effect of AAI in reducing anxiety surrounding appointments through anticipation of seeing a therapy dog. Conclusion(s): Further research is needed to determine the effectiveness of AAI in pediatric patients with advanced cancer and their caregivers, but results are promising that participation in AAI may lessen caregiver anxiety. Clinical Trial Registration Number is: NCT03765099.
Mahoney AB; Akard TF; Cowfer BA; Dietrich MS; Newton JL; Gilmer MJ
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.2023.0091" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0091</a>
Simulated learning for staff at a children's hospice: a quality improvement project
Child; child; terminal care; article; human; palliative therapy; Hospices; anxiety; hospice; Only Child; education; skill; questionnaire; care behavior; simulation; conversation; nurse; learning; total quality management; paramedical personnel
Simulated learning has well known positive effects but its use in palliative care education is limited. A quality improvement project was undertaken at a children's hospice to develop and evaluate simulation workshops. The aim was to increase the knowledge, skills and confidence of nurses and healthcare assistants in managing challenging situations commonly experienced when caring for children with life-limiting conditions and their families. The Plan, Do, Study, Act (PDSA) model for improvement was used to test simulation workshops on a small scale using a post-workshop questionnaire and reflective diaries. Despite some initial anxiety, participants felt that the workshop had enhanced their confidence, knowledge and skills, particularly in relation to conducting challenging conversations. The project has provided insight and evidence to develop simulated learning at the children's hospice and further afield.Copyright © 2023 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.
Richardson S; Price J; Sheedy G; Chadwick A
Nursing Children and Young People
2023
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<a href="http://doi.org/10.7748/ncyp.2023.e1489" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2023.e1489</a>
The FATHER Model of Loss and Grief After Child's Life-Limiting Illness
mental health; Child; child; article; female; human; male; palliative therapy; practice guideline; Medline; anxiety; systematic review; grief; guilt; ethnography; Cinahl; Only Child; Scopus; fatigue; deterioration; injury; mother; meta analysis; quality control; ScienceDirect; ambivalence; father; directory; disenfranchised grief; Preferred Reporting Items for Systematic Reviews and Meta-Analyses; unresolved grief
Context: Loss of a child to a life-limiting condition (LLC) is 1 of the most traumatic life events for parents. Research focusing on fathers' experiences is in its infancy. Objectives: Using a meta-ethnographic approach, we systematically reviewed the literature around fathers' predeath and postdeath experiences of loss and grief. Data sources: We searched Medline, Scopus, Cumulative Index to Nursing and Allied Health Literature, and Science Direct, and used the meta-ethnography reporting guidelines; the Preferred Reporting Items for Systematic Reviews and Meta-Analyses; and sampling strategy, type of study, approaches, range of years, limits, inclusion and exclusions, terms used, and electronic sources recommendations. Study selection: We used the Guide to Children's Palliative Care and the directory of LLCs to select qualitative articles published up until the end of March 2023 that described fathers' predeath and postdeath experiences of loss and grief after their child's LLC. We excluded studies that failed to differentiate outcomes between mothers and fathers. Data extraction: Extracted data included study details, participants' characteristics, response rate, source of participants, method and time of data collection, children's characteristics, and quality assessment. First-order and second-order data were also extracted. Results: Forty studies informed a FATHER model of loss and grief. This highlights both similarities (ambivalence, trauma responses, fatigue, anxiety, unresolved grief, guilt) and distinct features defining the predeath and postdeath experiences of loss and grief. Limitations: There was a bias toward greater mother participation in research. Specific categories of fathers remain underrepresented in palliative care literature. Conclusions: Many fathers experience disenfranchised grief and deterioration in mental health after a child's diagnosis and postdeath. Our model opens possibilities for personalized clinical support in the palliative care system for fathers.
Postavaru GI; Hamilton J; Davies S; Swaby H; Michael A; Swaby R; Mukaetova-Ladinska EB
Pediatrics
2023
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<a href="http://doi.org/10.1542/peds.2022-059122" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-059122</a>
The efficacy of educational interventions on neonatal intensive care unit nurses knowledge and attitude toward neonatal palliative care
fatigue; Palliative Care; Infant Newborn; adult; article; controlled study; female; hospital admission; human; male; death; family; pain; chronic pain; palliative therapy; neonatal intensive care unit; nursing; prognosis; grief; anxiety; morphine; human experiment; nurse; scoring system; aggression; questionnaire; demographics; sedation; nausea and vomiting; respiration depression; care behavior; Jordan; pretest posttest design; work experience; opiate; attitude; education program; knowledge; adjuvant therapy; analgesic activity; cocaine; drowsiness; drug dependence; educational status; electrolyte disturbance; emotional deprivation; intestine; marriage; neonatal intensive care unit attitude scale; pethidine
Abuhammad S; Elayyan M; El-Bashir M
Electronic Journal of General Medicine
2023
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<a href="https://www.ejgm.co.uk/download/the-efficacy-of-educational-interventions-on-neonatal-intensive-care-unit-nurses-knowledge-and-12902.pdf">10.29333/ejgm/12902</a>
Impact of Palliative Care Integration on End-of-Life Outcomes in Pediatric Hematopoietic Cell Transplant
hematopoietic cell; palliative therapy; transplantation; anxiety; appetite; bleeding; bodily secretions; child; conference abstract; controlled study; coughing; data analysis; demographics; diarrhea; distress syndrome; do not resuscitate order; documentation; dyspnea; edema; fatigue; female; fever; hospice; human; human cell; intubation; irritability; lifespan; major clinical study; male; medical record review; nausea and vomiting; pain; Palliative Care; quality of life; retrospective study; surgery; survival; terminal care
Introduction: Pediatric hematopoietic cell transplant (HCT) confers a high risk of morbidity and mortality and palliative care (PC) integration in HCT may improve outcomes. PC services can aid in advanced care planning, symptom management, and wholistic support for patients and their families, especially at end-of-life, yet little empiric data exists regarding the impact of PC involvement in pediatric HCT. Objective(s): Compare deceased pediatric HCT patients with and without PC involvement to identify differences in end-of-life characteristics. Method(s): Retrospective medical record review was performed for all HCT patients at St. Jude Children's Research Hospital who died between March 2008 and October 2017 (N=160). Variables collected included: demographics, PC involvement, symptom and end-of-life characteristics. Data analysis included descriptive statistics and tests of significance. Result(s): Of 160 deceased HCT patients PC involvement was present in 115 (71.9%) compared to 45 (28.1%) with no PC. No significant differences in demographic characteristics were noted between the 2 groups. Longer survival duration from HCT to death was noted in patients who received PC whose mean death was 305.5 days after HCT (median 189, range 10-2,834) as compared to a mean of 228.8 days between HCT and death in the no PC group (median 129, range 13-1,444) (p=0.047). Significant differenced were noted in which patients with PC involvement were more likely to have a DNR order (PC n=76 74.5%, NPC n=16 48.5% p=.005), less likely to be intubated in the last 24 hours of life (PC n=36 34%, NPC n=21 60% p=.006), and more likely to have been enrolled in hospice (PC n=38 33%, NPC n=4 8.9% p=.002). Documentation of distressing symptoms in the last month of life was higher in the PC group with notable symptom burden in both groups. Most frequently documented symptoms overall were pain (95.3%), fatigue (83.2%), fever (80.0%), edema (78.0%), bleeding (66.9%), diarrhea (65.6%), poor appetite (65.3%), anxiety (63.4%), nausea/ vomiting (58.9%), dyspnea (58.5%), secretions (57.4%), irritability (48.0%), and cough (47.5%). Conclusion(s): PC integration in pediatric HCT likely results in improved end-of-life care by way of enhanced advanced care planning, decreased intubation and resuscitative events, and increased hospice enrollment. PC integration in HCT does not lead to shorter life spans and may improve quality of life via enhanced symptom recognition and management.Copyright © 2023 American Society for Transplantation and Cellular Therapy
Levine DR; Cuviello A; Baker JN
Transplantation and Cellular Therapy
2023
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<a href="http://doi.org/10.1016/S2666-6367%2823%2900237-3" target="_blank" rel="noreferrer noopener">10.1016/S2666-6367%2823%2900237-3</a>
Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement
Bereavement; Perinatal Death; Terminal Care; Anxiety; Bereavement; Depression; Female; Humans; Infant; Infant Newborn; Parents/px [Psychology]; Perception; Prospective Studies; Terminal Care; Terminal Care/px [Psychology]
BACKGROUND: Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was associated with subsequent risk of parental anxiety or depression. The secondary objective was to assess parents' perceptions of end-of-life care according to death context., METHODS: Prospective single center observational study of all neonatal deaths in a neonatal intensive care unit over a 5-year period. Data were collected during hospitalization and from face-to-face interviews with parents 3 months after the infant's death. Anxiety and depression were assessed using Hospital Anxiety and Depression Scale (HADS) questionnaires, completed by parents 5 and 15 months after death., RESULTS: Of 179 deaths, 115 (64%) occurred after the WWLST decision and 64 (36%) despite maximum care. Parental satisfaction with newborn care and received support by professionals and relatives was higher in the first condition. Sixty-one percent of parents (109/179) attended the 3-month interview, with the distribution between groups very close to that of hospitalization. The completion rates of the HADS questionnaires by the parents who attended the 3-month interview were 75% (82/109) at 5 months and 65% (71/109) at 15 months. HADS scores at 5 months were consistent with anxiety in at least one parent in 73% (60/82) of cases and with depression in 50% (41/82). At 15 months, these rates were, respectively, 63% (45/71) and 28% (20/71). Risk of depression at 5 months was lower after a WWLST decision (OR 0.35 [0.14, 0.88], p = 0.02). Explicit parental agreement with the WWLST decision had an equivocal impact on the risk of anxiety at 5 months, being higher when expressed during hospitalization, but not at the 3-month interview., CONCLUSIONS: Context of death has a significant impact on the emotional experience of parents after neonatal loss, which underlines the importance of systematic follow-up conversations with bereaved parents. Copyright © 2023. The Author(s).
Cambonie G; Desage C; Thaller P; Lemaitre A; de Balanda KB; Combes C; Gavotto A
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/s12904-023-01183-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01183-8</a>
A team around the child' professionals' experiences of unmet needs, access and expectations in children's palliative care services, a phenomenological study in the UK
expectation; palliative nursing; pediatrics; phenomenology; respite care; anxiety; article; care behavior; child; Child; genetic transcription; human; Only Child; Palliative Care; responsibility; semi structured interview
This study aims to understand the experiences of professionals involved in caring for families of children with life-limiting illnesses to ascertain unmet needs, access issues and expectations of services.A phenomenological approach comprising semi-structured interviews with professionals from various services was used. Interviews that happened between July and November 2018 were audio-recorded, transcribed verbatim and thematically analysed based on descriptive phenomenology.In total, 29 interviews were conducted. Findings showed how essential collaborative working was for becoming a team around the child. Barriers to this include complex working relationships, overprotectiveness of families, roles and responsibilities and use of independent care records. The pressures of waiting times and the impact of staffing shortages affected the experiences of providing care. The reality of meeting families' expectations was shaped by family networking, online research and previous services resistance, which was influential in more challenging interactions. Expectations of care were also impacted by misunderstandings and anxieties surrounding access to services. Overall, professionals were concerned about families being used as a bottomless caring resource and stressed the need for short breaks to alleviate parents.Interventions that educate families and professionals on these services and how they can benefit the child and family would be well received.
Constantinou G; Cook EJ; Tolliday E; Randhawa G
Journal of Child Health 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/10.1177/13674935221147716" target="_blank" rel="noreferrer noopener">10.1177/13674935221147716</a>
Grief Journey: Perception and Response Based on Cultural Beliefs in Thai Women Experiencing Perinatal Death
Female; Anxiety; Grief; Adult; Health Personnel; Quality of Health Care; Adolescence; Self Concept; Medical Records; Emotions; Interviews; Purposive Sample; Qualitative Studies; Culture; Fear; Descriptive Research; Human; Hope; Reflection; Content Analysis; Field Notes; Evaluation; Hospitals Community; Women; Health Knowledge; Perinatal Death; Psychosocial Factors; Cultural Competence; Cultural Sensitivity; Forgiveness; Self-Talk; Social Norms; Thailand
Studying perinatal death needs to involve cultural beliefs influencing women's perceptions and responses to illuminate their grief journey following the loss of their baby. There is an urgent need to provide a deep understanding in this area that will be useful in meeting the unmet needs of women experiencing perinatal death. This qualitative study explored the grief journey set among cultural beliefs of Thai women experiencing perinatal death. Twenty-five participants who experienced perinatal death between six months and two years before participating in the study were recruited by purposive sampling through the medical history records of four community hospitals in a province of Thailand. Data were collected by in-depth interviews from September 2020 to March 2021 until data saturation. Content analysis was applied to analyze the data. Findings revealed four themes: 1) bewildering in the dark (wondering what is wrong, anxiety and fear about the anticipated loss, flickering hope); 2) grief response (the world suddenly shuts down, overwhelming sorrow); 3) self-reflection (by talking to self, talking to others); and 4) self-healing (compliance with cultural beliefs, the forgiveness of self and others). In conclusion, healthcare providers should be equipped with essential knowledge for addressing issues holistically based on cultural sensitivity that will be useful in enhancing the utmost ability of women in moving through their grief.
Nedruetai P; Puangpaka K; Bih-Ching S
Pacific Rim International Journal of Nursing Research
2022
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review
Adolescent; anxiety; autism spectrum disorder; Autism Spectrum Disorder; behaviour; Child; Child, Preschool; communication; Humans; hyperactivity; Infant; Infant, Newborn; Medical Marijuana; Parents; Prospective Studies; Retrospective Studies; Medicinal Cannabis
BACKGROUND: Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited, parents are increasingly turning to clinicians for advice regarding the use of medicinal cannabis to manage behavioural disturbances. OBJECTIVE: The objective of this scoping review was to identify and map symptoms, outcomes and adverse events related to medicinal cannabis treatment for ASD-related behaviours. METHODS: Ovid MEDLINE, Embase, CINAHL, PsycInfo, Web of Science Core Collection, Google Scholar and grey literature sources were searched up to 5 January 2020 for studies. Included studies met the following criteria: (1) investigate the use of medicinal cannabis, (2) at least 50% participants had ASD, (3) at least 50% of the study population was 0-18 years old and (4) any study design (published or unpublished). RESULTS: We identified eight completed and five ongoing studies meeting the inclusion criteria. All studies reported substantial behaviour and symptom improvement on medicinal cannabis, with 61% to 93% of subjects showing benefit. In the three studies reporting on concomitant psychotropic medication usage and with cannabis use, up to 80% of participants observed a reduction in concurrent medication use. Adverse events related to cannabis use were reported in up to 27% of participants related, and two participants had psychotic events. CONCLUSIONS: Early reports regarding medicinal cannabis in paediatric ASD symptom management are presented as positive; the evidence, however, is limited to very few retrospective cohort and observational studies. Evidence of safety and efficacy from prospective clinical trials is needed.
Fletcher S; Pawliuk C; Ip A; Huh L; Rassekh SR; Oberlander TF; Siden H
Child: Care, Health and Development
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/cch.12909" target="_blank" rel="noreferrer noopener">10.1111/cch.12909</a>
Implementing a Palliative Care Education Program in the NICU and Why It Is so Important: A Literature Review
Infant; Neonatal Palliative Care; Family; Nursing Staff; Anxiety; educational program; end-of-life care; Infant; neonatal; Palliative Care; Newborn Humans Intensive Care Units
Aim: To review the literature relevant to palliative care educational programs for nursing staff and families in the NICU. Background: Few hospitals have a palliative care educational program that is in place despite the increasing need for one. Neonatal staff are not educated or prepared to provide end-of-life care (EOLC) and support to family members. There is a lack of literature that looks at parents' perception of EOLC and the potential benefit that proper education may have had on their experience. Methods: Sixteen articles were reviewed, including 7 cohort studies, 5 expert opinions, 1 experimental trail, 1 case-controlled study, 1 literature review, and 1 case study. Conclusion: Implementation of a palliative care education program can provide the necessary tools for neonatal staff to provide EOLC. This education can reduce the stress and anxiety that staff feel about EOLC. With proper education, the neonatal staff can then provide the necessary support for family members. Relevance to Clinical Practice: EOLC is part of all NICUs, and neonatal staff should receive proper education on how to handle such situations.
Arbuckle AD
Neonatal Network
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1891/nn-2021-0010" target="_blank" rel="noreferrer noopener">10.1891/nn-2021-0010</a>
Incidence of anxiety and depression in children and young people with life-limiting conditions
Anxiety; Child; Depression; Young People
BACKGROUND: The aim of this study was to investigate the incidence of anxiety and depression in children and young people with life-limiting conditions. METHODS: A comparative cohort study was conducted, using primary and secondary care data from the Clinical Practice Research Datalink (CPRD) in England. Anxiety and depression codes were identified using diagnostic, symptom and prescription codes. Incidence rates of anxiety and depression were compared across condition groups using Poisson regression, adjusting for sex, age, ethnicity, and deprivation status. RESULTS: A total of 25,313 children and young people were included in the study: 5527 with life-limiting conditions, 6729 with chronic conditions, and 13,057 with no long-term conditions. The incidence of anxiety (IRR(adj): 1.39, 95% CI: 1.09-1.77) and depression (IRR(adj): 1.41, 95% CI: 1.08-1.83) was significantly higher in children and young people with life-limiting conditions, compared to children and young people with no long-term conditions. CONCLUSIONS: The higher incidence of anxiety and depression observed among children and young people with life-limiting conditions highlights the need for psychological support in this population, including further efforts to prevent, identify, and treat anxiety and depression. IMPACT: The analysis of primary and secondary healthcare data from England revealed that the incidence of anxiety and depression was higher among children and young people with life-limiting conditions, compared to those with no long-term conditions. This is the first study to investigate the incidence of anxiety and depression in children and young people with a wide range of life-limiting conditions. The higher incidence of anxiety and depression observed in children and young people with life-limiting conditions highlights the need for psychological support aiming to prevent, identify, and treat anxiety and depression in this population group.
Barker MM; Beresford B; Fraser LK
Pediatric Research
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1038/s41390-022-02370-8" target="_blank" rel="noreferrer noopener">10.1038/s41390-022-02370-8</a>
At the End of Life: Pediatric Palliative Care Can Make a Difference in Caring for the Child and Family
agitation; anxiety; cancer patient; care behavior; child; conference abstract; controlled study; demography; dyspnea; fear; female; hospital mortality; human; intensive care unit; irritability; leukemia; major clinical study; male; middle income country; pain; palliative therapy; pediatric patient; quasi experimental study; retrospective study; school child; seizure; skill; social needs; terminal care; ward
Background and Aims: WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family, the aim of this study is to describe the endof-life care of children with cancer during the end-of-life period who receive general palliative care or pediatric palliative care in low- and middle-income countries. Method(s): We conducted a retrospective quasi-experimental study between January 2013 and December 2020 with deceased pediatric cancer patients. Demographic and clinical variables were collected to describe end-of-life care received before (2013-2017) by general palliative care team and after (2018-2020) the creation of a pediatric palliative care team Results: A total of 180 pediatric patients were evaluated at the end of life (100 between 2013-2017 and 80 between 2018-2020). The median age was 11 years, regardless of sex. Half of the patients had a diagnosis of leukemia (49.8%), 52.7% receive palliative treatment for their oncological condition. Regarding symptoms, 72 hours before death, pain treatment was documented for 52.2% of the patients. Other signs and symptoms, such as dyspnea, seizures, agitation, and irritability, were present, with no differences between groups; however, it was noted that during PPC interventions, there was a significant reduction in anxiety or fear of end of life, we observed a greater number of interventions by the psychosocial professionals and also there was an increase in the number of patients who died in the hospital ward and a decrease in the number of patients who died in the intensive care unit. Conclusion(s): Pediatric palliative care requires special knowledge and skills, the provision of PPC for children with cancer allows patients and their families to receive support that alleviates the physical, emotional and social needs that arise from a life-limiting illness and finally receive high-quality end-of-life care.
Cuervo M; Garcia X; Molina K; Claros A; Bolanos J; Alvarez T; Cleves D
Pediatric Blood and Cancer
2022
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<a href="http://doi.org/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener">10.1002/pbc.29952</a>
Psychological and Psychiatric Comorbidities in Youth with Serious Physical Illness
anxiety; chronic illness; delirium; depression; medically; ill; palliative care; psychological distress
An estimated one in six children in the United States suffers from a mental disorder, including mood, anxiety, or behavioral disorders. This rate is even higher in children with chronic medical illness. This manuscript provides a concise review of the symptoms that comprise mental conditions often observed in children with chronic illness or at the end of life. It further provides some guidance to help clinicians distinguish normative from pathological presentations. Evidence-based psychotherapy interventions, potentially applicable to the acute inpatient setting, are briefly summarized. Broad recommendations are made regarding both psychotherapeutic as well as pharmacotherapeutic interventions, with a review of common or serious medication side effects. Finally, delirium recognition and management are summarized.
Nibras S; Kentor R; Masood Y; Price K; Schneider NM; Tenenbaum RB; Calarge C
Children
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children9071051">10.3390/children9071051</a>
Emotional Wellbeing in Adolescents Living With Chronic Conditions: A Metasynthesis of the Qualitative Literature
Adolescents; Anxiety; Depression; Mental health; Pediatrics; Positive health assets; Psychological wellbeing; Subjective wellbeing; Suicide; Teen
Adolescents living with chronic conditions (ALWCCs) are at a higher risk of suicide (odds ratio: 4.3) than their peers. No consensus exists in the scientific community on a definition or conceptual elements of emotional well-being in this vulnerable population, hindering informed interventional research. This study investigated the meaning of emotional well-being in ALWCCs. A systematic metasynthesis of the qualitative literature was performed and structured using ENTREQ guidelines for reporting qualitative metasynthesis. A final sample of 11 primary qualitative studies met inclusion criteria and was critically analyzed using a team-based thematic synthesis and reciprocal translation approach. The meaning of emotional well-being in ALWCCs is having positive relationships that ease loss, foster hope and resilience, and promote self-efficacy and self-actualization. The role of healthcare providers as a safe, stable nurturing relationship which promotes hope and positive body image emerges an area for future research. Spirituality as it relates to emotional well-being in this population is scarce in the qualitative literature and should be further explored.
Courtwright SE; Le Pard A; Jones J
Journal of Adolescent Health
2022
<a href="http://doi.org/10.1016/j.jadohealth.2021.12.020" target="_blank" rel="noreferrer noopener">10.1016/j.jadohealth.2021.12.020</a>
Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review
adolescent; cannabis; children; anxiety; autism spectrum disorder; behaviour; communication; hyperactivity
Background Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited, parents are increasingly turning to clinicians for advice regarding the use of medicinal cannabis to manage behavioural disturbances. Objective The objective of this scoping review was to identify and map symptoms, outcomes and adverse events related to medicinal cannabis treatment for ASD-related behaviours. Methods Ovid MEDLINE, Embase, CINAHL, PsycInfo, Web of Science Core Collection, Google Scholar and grey literature sources were searched up to 5 January 2020 for studies. Included studies met the following criteria: (1) investigate the use of medicinal cannabis, (2) at least 50% participants had ASD, (3) at least 50% of the study population was 0–18 years old and (4) any study design (published or unpublished). Results We identified eight completed and five ongoing studies meeting the inclusion criteria. All studies reported substantial behaviour and symptom improvement on medicinal cannabis, with 61% to 93% of subjects showing benefit. In the three studies reporting on concomitant psychotropic medication usage and with cannabis use, up to 80% of participants observed a reduction in concurrent medication use. Adverse events related to cannabis use were reported in up to 27% of participants related, and two participants had psychotic events. Conclusions Early reports regarding medicinal cannabis in paediatric ASD symptom management are presented as positive; the evidence, however, is limited to very few retrospective cohort and observational studies. Evidence of safety and efficacy from prospective clinical trials is needed.
Fletcher S; Pawliuk C; Ip A; Huh L; Rassekh SR; Oberlander TF; Siden H
Child
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/cch.12909" target="_blank" rel="noreferrer noopener">10.1111/cch.12909</a>
Effectiveness of virtual reality interventions for adolescent patients in hospital settings: Systematic review
adolescents; hospital; pain; anxiety; Systematic review; virtual reality
Background: Given the high level of interest and increasing familiarity with virtual reality among adolescents, there is great potential to use virtual reality to address adolescents' unique health care delivery needs while in hospital. While there have been reviews on the use of virtual reality for specific health conditions and procedures, none to date have reviewed the full scope of virtual reality hospital interventions for adolescents who are often combined with children as a homogenous group, despite the fact that adolescents experience virtual environments different from children. Objective(s): The aim of this review was to systematically identify available evidence regarding the use of virtual reality interventions for adolescent patients in hospital settings to evaluate effectiveness, suitability, and safety and identify opportunities for future research. Method(s): PubMed, PsycINFO, Medline, and Scopus databases were searched using keywords and phrases. Retrieved abstracts (n=1525) were double screened, yielding 276 articles for full-text screening. Of these, 8 articles met inclusion criteria. Data were extracted to a standardized coding sheet, and a narrative synthesis was performed due to the heterogeneity of the studies. Result(s): Four RCTs and 4 single-case reports were identified for inclusion, all of which aimed to reduce pain or anxiety. The scenarios targeted were burn pain, venipuncture, chemotherapy, preoperative anxiety, and palliative care. Three out of 4 RCTs found significant reductions in pain or anxiety outcomes measures when using virtual reality compared to standard care or other distraction techniques; however, only 1 study combined self-reported experiences of pain or anxiety with any physiological measures. Single-case reports relied primarily upon qualitative feedback, with patients reporting reduced pain or anxiety and a preference for virtual reality to no virtual reality. Conclusion(s): Virtual reality can provide a safe and engaging way to reduce pain and anxiety in adolescents while in hospital, particularly when virtual reality software is highly immersive and specifically designed for therapeutic purposes. As VR becomes more accessible and affordable for use in hospitals, larger and more diverse studies that capitalize on adolescents' interest in and aptitude for virtual reality, and on the full range of capabilities of this emerging technology, are needed to build on these promising results. Copyright © 2021 Journal of Medical Internet Research. All rights reserved.
Ridout B; Kelson J; Campbell A; Steinbeck K
Journal of Medical Internet Research
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.2196/24967" target="_blank" rel="noreferrer noopener">10.2196/24967</a>
Caregiver-Child Discrepancies in Reports of Child Emotional Symptoms in Pediatric Chronic Pain
children; Child; Female; Humans; Male; Emotions; Quality of Life; depression; Caregivers; Pain Measurement; Chronic Pain; Depression; anxiety; Anxiety/epidemiology; parents; chronic and recurrent pain; informant discrepancies
OBJECTIVE: Pediatric chronic pain evaluation includes self-reports and/or caregiver proxy-reports across biopsychosocial domains. Limited data exist on the effects of caregiver-child discrepancies in pediatric pain assessment. In children with chronic pain, we examined associations among discrepancies in caregiver-child reports of child anxiety and depressive symptoms and child functional impairment. METHODS: Participants were 202 children (Mage=14.49 ± 2.38 years; 68.8% female) with chronic pain and their caregivers (95.5% female). Children and caregivers completed the Revised Child Anxiety and Depression Scale (RCADS) and RCADS-Parent, respectively. Children also completed the Functional Disability Inventory. Mean difference tests examined caregiver-child discrepancies. Moderation analyses examined whether associations between child self-reported anxiety and depressive symptoms and functional impairment varied as a function of caregiver proxy-report. RESULTS: Children reported more anxiety and depressive symptoms compared with their caregivers' proxy-reports (Z = -4.83, p < .001). Both informants' reports of child anxiety and depressive symptoms were associated with child functional impairment (rs = .44, rs = .30, p < .001). Caregiver proxy-report moderated associations between child-reported anxiety and depressive symptoms and functional impairment (B = -0.007, p = .003). When caregiver proxy-report was low, child self-reported anxiety and depressive symptoms were positively related to functional impairment (B = 0.28, SE = 0.07, 95% CI [0.15, 0.41], p < .001). CONCLUSIONS: Discrepant caregiver-child perceptions of child anxiety and depressive symptoms may be associated with functioning in children with chronic pain, especially when caregivers report less child internalizing symptoms. These findings highlight the need for further examination of the effects of caregiver-child discrepancies on pediatric chronic pain outcomes and may indicate targets for intervention.
Martin SR; Zeltzer LK; Seidman LC; Allyn KE; Payne LA
Journal of Pediatric Psychology
2020
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<a href="http://doi.org/10.1093/jpepsy/jsz098" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsz098</a>
Beyond Amitriptyline: A Pediatric and Adolescent Oriented Narrative Review of the Analgesic Properties of Psychotropic Medications for the Treatment of Complex Pain and Headache Disorders
depression; anxiety; adolescent headache; adolescent pain; analgesics; child psychiatry; complex pain; pain psychiatry; pediatric headache; pediatric pain; psychotropics; Snri
Children and adolescents with recurrent or chronic pain and headache are a complex and heterogenous population. Patients are best served by multi-specialty, multidisciplinary teams to assess and create tailored, individualized pain treatment and rehabilitation plans. Due to the complex nature of pain, generalizing pharmacologic treatment recommendations in children with recurrent or chronic pains is challenging. This is particularly true of complicated patients with co-existing painful and psychiatric conditions. There is an unfortunate dearth of evidence to support many pharmacologic therapies to treat children with chronic pain and headache. This narrative review hopes to supplement the available treatment options for this complex population by reviewing the pediatric and adult literature for analgesic properties of medications that also have psychiatric indication. The medications reviewed belong to medication classes typically described as antidepressants, alpha 2 delta ligands, mood stabilizers, anti-psychotics, anti-sympathetic agents, and stimulants.
Windsor RB; Sierra M; Zappitelli M; McDaniel M
Children (Basel)
2020
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<a href="http://doi.org/10.3390/children7120268" target="_blank" rel="noreferrer noopener">10.3390/children7120268</a>
Enhancing Connections-Palliative Care: A Quasi-Experimental Pilot Feasibility Study of a Cancer Parenting Program
child; human; palliative therapy; preschool child; controlled study; hospice; article; child parent relation; adolescent; Self Concept; anxiety; depression; distress syndrome; skill; metastasis; nurse; advanced cancer; feasibility study; disease course; telephone; program impact; psychological adjustment; tumor-related gene
Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connections-Palliative Care (EC-PC) parenting program was developed in response to this gap.
Lewis F M; Loggers E T; Phillips F; Palacios R; Tercyak K P; Griffith K A; Shands M E; Zahlis E H; Alzawad Z; Almulla H A
Journal of palliative medicine
2020
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<a href="http://doi.org/10.1089/jpm.2019.0163" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0163</a>
CBT for Anxiety Related to Parenting a Child with a Life-Limiting Neuromuscular Condition: A Single Case Study
anxiety; CBT; Duchenne muscular dystrophy; neuromuscular condition; parent
Caring for a child with a neuromuscular condition such as Duchenne muscular dystrophy (DMD) presents many challenges, including managing the emotional impact of the diagnosis, managing extended periods of profound uncertainty, navigating the complexities of the healthcare system, managing the child's physical symptoms, and supporting their emotional needs. Although it is encouraging that there is a growing body of research seeking to better understand the medical and treatment needs of those with DMD, the psychosocial needs of individuals and their families have traditionally been considered as ancillary to the child's physical health needs. Consequently, there is limited research investigating the psychological wellbeing of those with DMD, and even less is known about the psychological wellbeing and needs of caregivers, who play a critical role in supporting their child. Caregivers experience multiple stressors and often encounter caring burden and high prevalence rates of anxiety and depression. This paper aims to explore the use of cognitive behavioral therapy (CBT) for comorbid anxiety and low mood in a parent of a child with DMD using a single case design. Results suggest that in the context of multiple stressors and significant life events, CBT was effective in improving mood and reducing symptoms of anxiety. This case highlights the value in offering support to parents of children with DMD and may have clinical implications for other neuromuscular and life-limiting conditions. Copyright © The Author(s) 2020.
Birdsey N
Clinical Case Studies.
2020
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<a href="http://doi.org/10.1177/1534650120964869" target="_blank" rel="noreferrer noopener">10.1177/1534650120964869</a>
Medication utilization for symptom management by pediatric inpatients with cancer at end-of-life
adult; anxiety; benzodiazepine; Black person; cancer patient; child; childhood cancer; conference abstract; controlled study; death; decision making; do not resuscitate order; drug therapy; ethnicity; female; gender; hospital patient; hospitalization; human; length of stay; major clinical study; male; manager; medicaid; multicenter study; nausea; opiate; pain; patient history of bone marrow transplantation; pediatric patient; recipient; retrospective study; solid malignant neoplasm; tumor diagnosis; university hospital; young adult
Background: Despite advances in pediatric oncology care, most children that die each year from cancer report significant suffering at end-of-life. Commonly reported symptoms include pain, anxiety, and nausea. More than half of pediatric cancer patients die in the hospital, yet little is known about medication use for symptom management during their terminal hospitalizations. Objective(s): To describe the utilization patterns of opiates, benzodiazepines, and gastrointestinal (GI) related medications for commonly reported symptoms by pediatric cancer inpatients during their last week of life. Design/Method: This retrospective study uses data from the Vizient clinical database/resource manager (CDB/RMTM), a compilation of clinical and resource use data from over 100 academic medical centers and their affiliates nationally. Pediatric patients (ages 0-21) with a diagnosis of malignancy who died during an inpatient hospitalization from 2010-2017 were included (n = 1,659). Patients admitted for less than 1 week were excluded. Individual medications were categorized as opiate, benzodiazepine, or GI-related. Exposure to each group was ascertained for all patients at two time points: one week and one day prior to death. Factors associated with the time of exposure were examined using generalized estimating equations. Results were summarized using adjusted odds ratios (aOR). Result(s): Opiate exposure increased from 76% one week prior to death to 82% one day prior (aOR 1.5; p<0.001). Similarly, use of benzodiazepines also increased from 53% to 66% (aOR 1.3; p = 0.024). Receipt of GI medications decreased from 92% to 89% (aOR 0.7; p = 0.001). Opiates and benzodiazepines were more likely to be administered to patients with solid tumor diagnosis (aOR 1.4, 1.2), history of bone marrow transplant (BMT) (aOR 1.3, 1.4), and longer length of stay (LOS), respectively. Benzodiazepine utilization was lower among blacks (aOR 0.6) and Medicaid recipients (aOR 0.8). GI medications were also more likely to be received by patientswith history ofBMT(aOR 1.8) and longer LOS; additionally, exposure was higher in those age 5-9 (aOR 1.9) and of Asian race (aOR 2.5). Reported aORs are significant at p<0.05. Gender, ethnicity, study year, location in ICU, and DNR status did not significantly affect exposure in any category. Conclusion(s): Not all patients are receiving medications typically used for symptom management in the week preceding death. Opiate and benzodiazepine exposure increased while GI medication use decreased. Earlier and more consistent intervention with these medications may reduce patient suffering. Furthermore, variability in utilization associated with patient characteristics suggests differences in symptomatology and provider/family decision-making warranting further study.
Prozora S; Shabanova V; Massaro S; Davidoff A
Pediatric Blood and Cancer
2019
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<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</a>
Medical marijuana use for pediatric oncology patients: single institution experience
adolescent; adult; adverse drug reaction; anxiety; article; burn; cancer patient; cancer therapy; child; childhood cancer; clinical article; drug safety; drug therapy; female; human; male; medical cannabis; Medical marijuana; microcapsule; mood; nausea and vomiting; pain; palliative therapy; pediatric oncology; prescription; side effect; sleep; smoke; smoking; supportive care; throat; vaporization; young adult
Medical marijuana (MM) is widespread in many medical fields, including oncology, with limited use in pediatric oncology where research is scarce and often shows conflicting results. This research focuses on alleviating side effects of anticancer treatment as an integral part of supportive and palliative care of children with cancer. We report our experience with MM treatment in 50 children, adolescents, and young adults with different types of cancer during 2010-2017. The main indications for prescriptions were nausea and vomiting, decreased mood, disturbed sleep, and pain. The medication was supplied to 30 patients via oil drops (60%) and 11 via smoking (22%), followed by vaporization, capsules, or combinations of various routes. Positive effects were reported by verbal children and parents in 80% of cases. MM was generally well tolerated with few patients reporting toxicity, with the most common adverse reactions being burning in the throat and anxiety attacks in subjects who chose to smoke the product. We conclude that MM may serve as a potentially useful complementary therapy to conventional supportive treatment of children suffering from cancer at the end of life. Further research is needed on the safety and efficacy and the consequences of prolonged use in pediatric populations. Copyright © 2019, © 2019 Taylor & Francis Group, LLC.
Ofir R; Bar-Sela G; Weyl Ben-Arush M; Postovsky S
Pediatric Hematology and Oncology.
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/08880018.2019.1630537" target="_blank" rel="noreferrer noopener">10.1080/08880018.2019.1630537</a>
Preferences regarding end-of-life care among adolescents and young adults with cancer: results from a comprehensive multicenter survey in Japan
Adolescent and young adult; adult; adverse drug reaction; anxiety; article; cancer; cancer prognosis; cancer survival; cancer survivor; cancer therapy; chemotherapy; child; controlled study; end-of-life care; female; health care personnel; human; Japan; major clinical study; male; multicenter study; palliative therapy; patient history of chemotherapy; preference; prognostic disclosure; questionnaire; side effect; terminal care; young adult
CONTEXT: Patient preferences influence end-of-life (EOL) care which patients receive. However, preferences regarding EOL care among adolescent and young adult (AYA) cancer population remain unclear. OBJECTIVE(S): The objective of the study was to evaluate preferences regarding EOL care among AYA cancer population. METHOD(S): We evaluated preferences regarding EOL care as a part of a comprehensive multicenter questionnaire study investigating the experience and needs of Japanese AYA cancer population. RESULT(S): A total of 349 AYA cancer population (213 AYA cancer patients and 136 AYA cancer survivors) were evaluated. Eighteen six percent (296/344), 53% (180/338), 88% (301/341) and 61% (207/342) of participants with valid response preferred to have prognostic disclosure, receive palliative chemotherapy for incurable cancer with limited efficacy at the expense of considerable toxicity, actively use palliative care and stay home at EOL, respectively. In multivariate analysis, the preference regarding prognostic disclosure was associated positively with no child status (OR = 3.05, p = 0.003) and negatively with history of chemotherapy (OR = 0.23, p = 0.009), the preference regarding palliative chemotherapy for incurable cancer with limited efficacy at the expense of considerable toxicity was associated positively with status under active cancer treatment (OR = 1.74, p = 0.03) and the preference of staying home at EOL was positively associated with anxiety (OR = 1.72, p = 0.04). CONCLUSION(S): This study elucidated preferences regarding EOL care among Japanese AYA cancer population. These findings may help health care practitioners to have better understanding of preferences regarding EOL care among this population. Copyright © 2019. Published by Elsevier Inc.
Hirano H; Shimizu C; Kawachi A; Ozawa M; Higuchi A; Yoshida S; Shimizu K; Tatara R; Horibe K
Journal of Pain and Symptom Management
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.04.033" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.04.033</a>
African American and Latino bereaved parent health outcomes after receiving perinatal palliative care: A comparative mixed methods case study
Adult; Anticipatory Grieving; Anxiety; Bereavement; Blacks -- Psychosocial Factors; Comparative Studies; Depression; Descriptive Statistics; Female; Fetal Abnormalities -- Diagnosis; Funding Source; Health Status; Hispanics -- Psychosocial Factors; Human; Interviews; Male; Multimethod Studies; Palliative Care; Parental Attitudes; Patient Satisfaction; Perinatal Care; Perinatal Death -- Psychosocial Factors; Psychological Well-Being; Qualitative Studies; Quantitative Studies; Questionnaires; Scales; Self Report; Summated Rating Scaling; Surveys; Treatment Outcomes
Death of one's infant is devastating to parents, negatively impacting couple relationships and their own health. The impact of a prenatally diagnosed life-limiting fetal condition (LLFC) on parents of minority status is unclear. This comparative mixed methods case study examined the person characteristics, quality of perinatal palliative care (PPC) received and parent health outcomes. Bereaved couples, 11 mothers and 3 fathers of minority or mixed races (11 African American and Latino, 1 White Latino and 2 White parents) completed the survey; 7 were interviewed. Parents rated their general health close to good , physical health close to normal but mental health lower than the population norm. Clinical caseness (abnormal levels) of anxiety were reported in 50% of parents whereas depression scores were normal. The experience of fetal diagnosis and infant death had a negative impact on the health of 40% of participants however, parents could not identify what specifically caused their health problems. Most were satisfied with their PPC but some shared that original providers were not supportive of pregnancy continuation. After the baby's death, 71% reported closer / stronger couple relationships. Two contrasting cases are presented. Once parents found PPC, their baby was treated as a person, they spent time with their baby after birth, and found ways to make meaning through continuing bonds. Despite high overall satisfaction with PPC, bereaved parents were deeply impacted by their infant's death. Mixed methods case study design illuminated the complicated journeys of parents continuing their pregnancy with a LLFC. • The impact of race and ethnicity on response to perinatal loss is not well known. • Perinatal death can have long-lasting, negative effect on the parents' health. • Perinatal palliative care exists for fetal life-limiting conditions. • The majority of parents reported worsening or new health problems after the loss. • Parents found that perinatal palliative care greatly improved their experience.
Côté-Arsenault D; Denney-Koelsch E M; McCoy T P; Kavanaugh K
Applied Nursing Research
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.apnr.2019.151200" target="_blank" rel="noreferrer noopener">10.1016/j.apnr.2019.151200</a>
Age-dependent change in behavioral feature in Rubinstein-Taybi syndrome
Adolescent; Adult; Age; Factors; Behavior; Child; Preschool; Female; Humans; Infant; Male; Rubinstein-Taybi Syndrome/di [Diagnosis]; Surveys and Questionnaires; Young Adult; behavioral problems; Rubinstein-Taybi Syndrome; trajectory; characteristics; anxiety; depression; aggression; aggressive behavior
Rubinstein-Taybi syndrome (RTS) is characterized by developmental delay, postnatal growth retardation, typical facial appearance, and broad thumbs and big toes. The behavioral phenotype of children with RTS has been described as friendly and having good social contacts; however, a short attention span and hyperactivity are sometimes present. Little attention has been paid to the behavioral aspects of adults with RTS. We conducted an observational study focusing on behavioral problems in adolescents and adults with RTS compared with children with RTS. A total of 63 patients with RTS and their caretakers answered self-administered questionnaires regarding behavioral features including the Child Behavior Checklist (CBCL). High total CBCL scores were observed, and the mean score was beyond the clinical cut-off point. After stratification into two groups according to age, the older group (>14 years) displayed statistically significant higher scores for Anxious/Depression (P = 0.002) and Aggressive Behavior (P = 0.036) than the younger group (<13 years). In analyses of single items, statistically significant differences between the younger group and the older group were found for 'Nervous, high-strung, or tense' (31.3% vs 67.7%, P = 0.004) and 'Too fearful or anxious' (37.5% vs 64.5%, P = 0.032). Here, we showed that the specific behavioral phenotypes of RTS change during adolescence, with anxiety, mood instability, and aggressive behavior emerging as patients age. A clear need exists to follow-up patients with RTS to catch the eventual emergence of psychiatric problems with age. If necessary, pharmacological treatment should be considered.Copyright © 2012 The Authors. Congenital Anomalies © 2012 Japanese Teratology Society.
Yagihashi T; Kosaki K; Okamoto N; Mizuno S; Kurosawa K; Takahashi T; Sato Y; Kosaki R
Congenital Anomalies
2012
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/j.1741-4520.2012.00356.x" target="_blank" rel="noreferrer noopener">10.1111/j.1741-4520.2012.00356.x</a>
Behavioral aspects of Lesch-Nyhan disease and its variants
Adolescent; Adult; Aggression; Anxiety; Child; Depression; Female; Humans; Lesch-Nyhan Syndrome/px [Psychology]; Male; Self-Injurious Behavior; self-injury; Severity of Illness Index; alertness; behavioral problems; Lesch-Nyhan syndrome; trajectory; characteristics; distractibility
Self-injury is a defining feature of lesch-nyhan disease (LND) but does not occur in the less severely affected Lesch-Nyhan variants (LNV). The aim of this study was to quantify behavioral and emotional abnormalities in LND and LNV. Thirty-nine informants rated 22 patients with LND (21 males, 1 female), 11 males with LNV, and 11 healthy controls (HC; 10 males, 1 female) using two well-validated rating scales. The age of patients with LND ranged from 12 years 7 months to 38 years 3 months (mean 22 y 11 mo; sd 7 y 8 mo), whereas the age range of those with LNV was 12 years 9 months to 65 years (mean 30 y 7 mo; sd 15 y 2 mo), and the healthy controls were aged 12 years 4 months to 31 years 3 months (mean 17 y 10 mo; sd 5 y 7 mo). Behavioral ratings were based on the Child Behavior Checklist and the American Association On Mental Retardation's Adaptive Behavior Scale--Residential And Community, 2nd edition. Statistical analyses revealed that patients with LND showed severe self-injury together with problematic aggression, anxious-depressed symptoms, distractibility, motor stereotypes, and disturbing interpersonal behaviors. Patients with LNV were rated as being intermediate between the HC and LND groups on all behavior scales. Although the LNV group did not differ from hcs on most scales, their reported attention problems were as severe as those found in LND. We conclude that self-injurious and aggressive behaviors are nearly universal and that other behavioral abnormalities are common in LND. Although patients with LNV typically do not self-injure or display severe aggression, attention problems are common and a few patients demonstrate other behavioral anomalies.
Schretlen D J; Ward J; Meyer S M; Yun J; Puig J G; Nyhan W L; Jinnah H A; Harris J C
Developmental Medicine and Child Neurology
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/S0012162205001374" target="_blank" rel="noreferrer noopener">10.1017/S0012162205001374</a>
Depression and anxiety disorders in children and adolescents with velo-cardio-facial syndrome (VCFS)
behavioral problems; 22q11.2 deletion syndrome; trajectory; characteristics; adaptive behavior; depression; anxiety; IQ; age
Fabbro A; Rizzi E; Schneider M; Debbane M; Eliez S
European Child and Adolescent Psychiatry
2012
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00787-012-0273-x" target="_blank" rel="noreferrer noopener">10.1007/s00787-012-0273-x</a>
A national survey of Rett syndrome: behavioural characteristics
behavior; breathing difficulties; tone and motor problems; Rett syndrome; trajectory; characteristics; hand stereotypies; stereotypy; breathing problems; sleep problems; anxiety; inappropriate fear
BACKGROUND: The aim was to gain a UK national sample of people with Rett syndrome (RTT) across the age range and compare their characteristics using a variety of relevant behavioural measures with a well-chosen contrast group. METHODS: The achieved sample was 91 girls and women, aged from 4 to 47 years, of whom 71 were known to be MECP2 positive. The contrast group (n = 66), matched for age, gender, language and self-help skills, comprised individuals with six other syndromes associated with intellectual disability. Parental questionnaire measures of RTT specific characteristics, impulsivity, overactivity, mood, interest and pleasure, repetitive behaviour and self-injury were administered. RESULTS: Hand stereotypies, breathing irregularities, night-time unrest and anxiety or inappropriate fear were commonly reported among the RTT sample. Problems of low mood were also reported as common. However, mood and interest and pleasure were no lower than found in the contrast group. In addition, self-injury was lower than in the contrast group and was associated with factors found to predict self-injury in other groups of people with severe intellectual disabilities. CONCLUSIONS: There is variability in the manifestation of problem behaviours potentially associated with the syndrome across individuals, with some more severely affected in most areas than others. Some of this variability appears to be underpinned by genetic mutation.
Cianfaglione R; Clarke A; Kerr M; Hastings R P; Oliver C; Moss J; Heald M; Felce D
Journal of Neurodevelopmental Disorders
2015
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/s11689-015-9104-y" target="_blank" rel="noreferrer noopener">10.1186/s11689-015-9104-y</a>
The behavioural phenotype of Cornelia de Lange Syndrome: a study of 56 individuals
children; Syndrome; Rehabilitation; communication; Neurology; Education & Educational Research; autism; Genetics & Heredity; brachmann-delange syndrome; Neurosciences &; Psychiatry; intellectual disability; mental-retardation; intelligence; behavioural phenotypes; cognitive level; Cornelia de Lange; language-skills; nipbl; normal; self-injury; self-mutilative behavior; behavioral problems; De Lange syndrome; trajectory; characteristics; CdLS; hyperactivity; attention disorder; anxiety; compulsive disorders; self-injurious behavior; autistic-like features
Background Few studies have investigated functional and behavioural variables of Cornelia de Lange Syndrome (CdLS) in a large sample of individuals. The aim of this study is to provide greater insight into the clinical, behavioural and cognitive characteristics that are associated with CdLS. Methods In total, 56 individuals with CdLS participated in the study. During hospitalization, their mothers received a number of questionnaires to complete. The behavioural phenotype was investigated using the following scales: Developmental Behaviour Scale Primary Carer Version; Autism Behaviour Checklist; Childhood Autism Rating Scale. Results Our participants demonstrated some behavioural characteristics that are frequently associated with CdLS (hyperactivity, attention disorder, anxiety, compulsive disorders, self-injurious behaviour and autistic-like features). Our findings demonstrate the variability of behavioural characteristics in CdLS in addition to highlighting the contribution of some variables to both the CdLS behavioural profile and the developmental trajectory of the behavioural pattern. Conclusions The behavioural characteristics identified in our sample were correlated with some clinical and functional aspects (chronological age, cognitive level and clinical phenotype). The variability of the behavioural profile in CdLS reflected the wide variability in cognitive and adaptive functioning across individuals and led us to conclude that there may be multiple behavioural phenotypes associated with the syndrome. Further comparative studies between CdLS and individuals with intellectual disability or other genetic syndromes may help to provide further understanding of the behavioural phenotype of CdLS.
Basile E; Villa L; Selicorni A; Molteni M
Journal of Intellectual Disability Research
2007
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/j.1365-2788.2007.00977.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2788.2007.00977.x</a>
Anxiety-like behavior in Rett syndrome: characteristics and assessment by anxiety scales
children; Anxiety; Intellectual disabilities; Neurosciences & Neurology; Rett syndrome; mecp2; mental-retardation; fragile-x-syndrome; checklist; autism spectrum disorder; down-syndrome; mouse model; Problematic behavior; quality-of-life; severity; Social avoidance; behavior; breathing difficulties; sleep disturbance; trajectory; characteristics
Background: Rett syndrome (RTT) is a severe neurodevelopmental disorder characterized by regression of language and motor skills, cognitive impairment, and frequent seizures. Although the diagnostic criteria focus on communication, motor impairments, and hand stereotypies, behavioral abnormalities are a prevalent and disabling component of the RTT phenotype. Among these problematic behaviors, anxiety is a prominent symptom. While the introduction of the Rett Syndrome Behavioral Questionnaire (RSBQ) represented a major advancement in the field, no systematic characterization of anxious behavior using the RSBQ or other standardized measures has been reported. Methods: This study examined the profiles of anxious behavior in a sample of 74 girls with RTT, with a focus on identifying the instrument with the best psychometric properties in this population. The parent-rated RSBQ, Anxiety, Depression, and Mood Scale (ADAMS), and Aberrant Behavior Checklist-Community (ABC-C), two instruments previously employed in children with neurodevelopmental disorders, were analyzed in terms of score profiles, relationship with age and clinical severity, reliability, concurrent validity, and functional implications. The latter were determined by regression analyses with the Vineland Adaptive Behavior Scales-Second Edition (Vineland-II) and the Child Health Questionnaire (CHQ), a quality of life measure validated in RTT. Results: We found that scores on anxiety subscales were intermediate in range with respect to other behavioral constructs measured by the RSBQ, ADAMS, and ABC-C. Age did not affect scores, and severity of general anxiety was inversely correlated with clinical severity. We demonstrated that the internal consistency of the anxiety-related subscales were among the highest. Test-retest and intra-rater reliability was superior for the ADAMS subscales. Convergent and discriminant validity were measured by inter-scale correlations, which showed the best profile for the social anxiety subscales. Of these, only the ADAMS Social Avoidance showed correlation with quality of life. Conclusions: We conclude that anxiety-like behavior is a prominent component of RTT's behavioral phenotype, which affects predominantly children with less severe neurologic impairment and has functional consequences. Based on available data on standardized instruments, the ADAMS and in particular its Social Avoidance subscale has the best psychometric properties and functional correlates that make it suitable for clinical and research
Barnes K V; Coughlin F R; O'Leary H M; Bruck N; Bazin G A; Beinecke E B; Walco A C; Cantwell N G; Kaufmann W E
Journal of Neurodevelopmental Disorders
2015
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/s11689-015-9127-4" target="_blank" rel="noreferrer noopener">10.1186/s11689-015-9127-4</a>
Early palliative care reduces stress in parents of neonates with congenital heart disease: validation of the "Baby, Attachment, Comfort Interventions"
comfort; congenital heart disease; mental stress; palliative therapy; anxiety; article; child parent relation; cohort analysis; controlled study; emotional attachment; female; health care quality; human; infant; male; newborn; prospective study
OBJECTIVE: To test our hypothesis that an innovative method of early palliative care called "Baby, Attachment, Comfort Interventions" reduces psychological distress in parents of neonates with congenital heart disease. STUDY DESIGN: Prospective cohort study of parents of neonates with congenital heart disease. Distress was evaluated at admission and discharge using Neonatal Unit Parental Stressor Scale and Depression Anxiety Stress Index-21. Control parents received standard of care. Intervention parents received interdisciplinary interventions aimed at improving neonatal comfort and parenting experience.
Callahan K; Steinwurtzel R; Brumarie L; Schechter S; Parravicini E
Journal of perinatology : official journal of the California Perinatal Association.
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1038/s41372-019-0490-y" target="_blank" rel="noreferrer noopener">10.1038/s41372-019-0490-y</a>
Influence of health interventions on quality of life in seriously ill children at the end of life: A systematic review protocol
Medline; child; female; human; male; pain; quality control; systematic review; anxiety; pediatrics; quality of life; checklist; Cinahl; data extraction; Embase; meta analysis; narrative; publication; random sample; research priority; review; synthesis; Web of Science
Background Seriously ill children suffer from numerous symptoms at the end of their lives, including pain, anxiety, and restricted communication. There are currently no comprehensive overviews of which health interventions have proven benefits and which have proven detrimental effects on the quality of life of children in an end-of-life context. In order to identify potential quality indicators to eventually improve care, a systematic review of available evidence is needed. The aim of the current systematic review will be to make an overview of the influence of health interventions on associated outcomes related to quality of life at the end of life in seriously ill children. Methods A systematic search will be conducted in MEDLINE, Embase, CENTRAL, CINAHL, and Web of Science. We will include quantitative empirical designs looking into the influence of a health intervention on (proxies of) quality of life at the end of life in seriously ill children. Three independent authors will review titles and abstracts and screen full texts against eligibility criteria. One reviewer will carry out full data extraction and quality assessment, and a 20% random sample will be extracted and assessed by two independent reviewers. We will use the QualSyst Tool for assessment of the quality of the included studies (QualSyst Tool) for quality assessment; overall strength of the body of evidence will be assessed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach. An overview table of health interventions will be discussed through narrative synthesis. Should sufficient homogeneous publications arise, we will perform meta-analyses with a random-effects model. Our protocol adheres to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) checklist for study protocols. Discussion As part of a larger project, we will use the results of this review to identify a first set of quality indicators for the care for children at the end of life. Reviewing the current span of evidence and identifying research gaps will uncover future research priorities into the care for children at the end of life.
Piette VE; Cohen J; Deliens L; Pauwels N; Van Der Werff Ten Bosch J; Beernaert K
Systematic Reviews
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s13643-019-1059-8" target="_blank" rel="noreferrer noopener">10.1186/s13643-019-1059-8</a>
Anxiety and depression in bereaved parents after losing a child due to life-limiting diagnoses: A Danish nationwide questionnaire survey
adult; article; child; female; human; major clinical study; male; controlled study; education; palliative therapy; anxiety; bereavement; questionnaire; Center for Epidemiological Studies Depression Scale; Denmark; depression; father; mother; single (marital status); young adult
CONTEXT: Losing a child is the most burdensome event parents can experience involving risks of developing anxiety and depression. OBJECTIVES: To investigate anxiety and depression in bereaved parents during their child's life-limiting illness and imminent death and three to five years after the loss to target future interventions. METHODS: A Danish nationwide cross-sectional questionnaire survey. From 2012 to 2014, a register-based study identified causes of deaths of 951 children aged zero to 18 years. Potential palliative diagnoses were classified according to previously used classification. A total of 402 families were included. A modified version of the self-administered questionnaire "To lose a child" was used. Non-response surveys identified reasons for lack of response. RESULTS: In all, 136 mothers and 57 fathers completed a questionnaire, representing parents of 152 children (38%). Sixty-five percent of mothers and 63% of fathers reported moderate-to-severe anxiety during the child's illness. However, three to five years after their loss anxiety had decreased markedly. Thirty-five percent of mothers and 39% of fathers reported moderate-to-severe depression during the child's illness; three to five years after the loss they were suffering equivalently from depression. The Center for Epidemiologic Studies Depression Scale indicated that severe depression was significantly associated with lower education and being unmarried. CONCLUSION: The reporting of anxiety during the child's illness and prolonged depression in bereaved parents three to five years after the loss indicates a potential need for psychological interventions. In the process of implementing specialized pediatric palliative care in Denmark, our findings should be considered for future treatment programs.
Lykke C; Ekholm O; Schmiegelow K; Olsen M; Sjogren P
Journal of pain and symptom management.
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.06.025" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.06.025</a>
Prevalence and Incidence of Anxiety and Depression among Children, Adolescents, and Young Adults with Life-Limiting Conditions: A Systematic Review and Meta-analysis
Medline; adolescent; adult; article; child; female; human; male; systematic review; interview; human tissue; data extraction; Embase; meta analysis; synthesis; anxiety; depression; young adult; incidence; prevalence; monitoring; Organisation for Economic Co-operation and Development; psychologic assessment; PsycINFO; regression analysis
IMPORTANCE: Children, adolescents, and young adults with life-limiting conditions experience various challenges that may make them more vulnerable to mental health problems, such as anxiety and depression. However, the prevalence and incidence of anxiety and depression among this population appears to be unknown. OBJECTIVE: To conduct a systematic review and meta-analysis to estimate the prevalence and/or incidence of anxiety and depression in children, adolescents, and young adults with life-limiting conditions. DATA SOURCES: Searches of MEDLINE (PubMed), PsycInfo, and Embase were conducted to identify studies published between January 2000 and January 2018. STUDY SELECTION: Studies were eligible for this review if they provided primary data of anxiety or depression prevalence and/or incidence, included participants aged 5 to 25 years with a life-limiting condition, were conducted in an Organisation for Economic Co-operation and Development country, and were available in English. DATA EXTRACTION AND SYNTHESIS: Random-effects meta-analyses were generated to provide anxiety and depression prevalence estimates. Meta-regression was conducted to analyze associations between study characteristics and each prevalence estimate. MAIN OUTCOMES AND MEASURES: Prevalence of anxiety and depression. RESULTS: A total of 14 866 nonduplicate articles were screened, of which 37 were included in the review. Of these, 19 studies reported anxiety prevalence, and 36 studies reported depression prevalence. The mean (range) age of participants was 15.4 (6-25) years. The meta-analysis of anxiety prevalence (n = 4547 participants) generated a pooled prevalence estimate of 19.1% (95% CI, 14.1%-24.6%). Meta-regression analysis found statistically significant differences in anxiety prevalence by assessment tool; diagnostic interviews were associated with higher anxiety prevalence (28.5% [95% CI, 13.2%-46.8%]) than self-reported or parent-reported measures (14.9% [95% CI, 10.9%-19.4%]). The depression meta-analysis (n = 5934 participants) found a pooled prevalence estimate of 14.3% (95% CI, 10.5%-18.6%). Meta-regression analysis revealed statistically significant differences in depression prevalence by the mean age of the sample (β = 0.02 [95% CI, 0.01-0.03]; P = .001). CONCLUSIONS AND RELEVANCE: In this systematic review and meta-analysis, the prevalence of anxiety and depression among children, adolescents, and young adults with life-limiting conditions was high, highlighting the need for increased psychological assessment and monitoring. Further research is required to determine the prevalence and incidence of anxiety and depression in a larger sample of children, adolescents, and young adults with a broader range of life-limiting conditions.
Barker MM; Beresford B; Bland M; Fraser LK
JAMA Pediatrics.
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1001/jamapediatrics.2019.1712" target="_blank" rel="noreferrer noopener">10.1001/jamapediatrics.2019.1712</a>
Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study
article; child; female; human; male; palliative therapy; controlled study; qualitative research; thematic analysis; Coping; Paediatrics; pediatrics; clinical article; coping behavior; decision making; interview; child care; anxiety; Caregiving; child parent relation; Experiences; grief; Palliative care; Parents; perception; tension; uncertainty
Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals' support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s). Conclusion(s): Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies.What is Known:* In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child's symptoms, a life worth living and a family balance.What is New:* Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship.* Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes.* To provide tailored support, professionals need to understand parents' perceptions, relationship with their child and coping strategies. Copyright © 2019, The Author(s).
Verberne L M; Kars M C; Schouten-van Meeteren A Y N; van den Bergh E M M; Bosman D K; Colenbrander D A; Grootenhuis M A; van Delden J J M
European Journal of Pediatrics.
2019
<a href="http://doi.org/10.1007/s00431-019-03393-w" target="_blank" rel="noreferrer noopener">10.1007/s00431-019-03393-w</a>