Pediatric Palliative Care Pilot Curriculum: Impact Of "pain Cards" On Resident Education
Adult; Communication; Curriculum; Female; Health Knowledge Attitudes Practice; Hospitals Pediatric/organization & Administration; Humans; Internship And Residency/methods; Male; Pain Management; Pain Measurement; Palliative Care; Pediatrics/education; Pilot Projects
Palliative Care Curriculum; Palliative Care Education; Pediatric Palliative Care; Pediatric resident; Pocket cards; Resident education
BACKGROUND:
Prior research has shown that less than 40% of pediatric program directors believe their graduating residents competent in palliative care. While many curricula have been developed to address this need, few have demonstrated improved comfort and/or knowledge with palliative care principles. The purpose of this study was to test a pocket card educational intervention regarding resident knowledge and comfort with palliative care principles.
METHODS:
Pocket reference cards were created to deliver fundamentals of pediatric palliative care to resident learners; didactics and case studies emphasized principles on the cards. Self-reported comfort and objective knowledge were measured before and after the curriculum among residents.
RESULTS:
Of 32 post-graduate year 2 (PGY2) residents, 23 (72%) completed the pre-test survey. The post-test was completed by 14 PGY2 residents (44%) and 16 of 39 PGY3/4 residents (41%). There was improvement in comfort with communication, as well as pain and symptom management among the residents. Knowledge of palliative care principles improved in part, with only a few survey questions reaching statistical significance. 100% of respondents recommended the cards be provided to their colleagues.
CONCLUSION:
This longitudinal curriculum, designed specifically for pediatric residents, was built into an existing training program and proved to be popular, feasible, and effective at improving comfort with basic palliative care principles.
Barnett MD; Maurer SH; Wood GJ
American Journal Of Hospice And Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1177/1049909115590965
Pocket Reference Card Improves Pediatric Resident Comfort In Caring For Children At End Of Life
Quality; Barriers; Perspectives; Palliative Care; Providers; Pain Management; Medicine; National-survey; Education; Health Care Sciences & Services
Medical Education; Pediatric Palliative Care; Resident education
Background: Studies have shown that pediatricians in all stages of training are uncomfortable managing patients at end of life. Our goal was to create and test a portable reference card to improve pediatric resident education in comprehensive care for children nearing end of life.
Methods: We evaluated the impact of the Pediatric End-of-Life Care Management Reference Card on residents' perceived comfort and knowledge through pre- and post-intervention surveys. The preintervention questionnaires and pocket cards were distributed to all first- and second-year residents, and then a follow-up survey was provided six months later. Based on Likert scales, questions focused on self-reported understanding of palliative care principles and knowledge regarding and comfort in performing end-of-life symptom management.
Results: Twenty-six pediatric residents completed pre- and post-intervention surveys. Following receipt of the reference card, no significant changes were noted consistently across all groups of residents. The majority of improvements were noted when comparing second to third year residents, including knowledge and comfort related to pain management, comfort in managing secretions and nausea, and documentation following death. The first to second year residents demonstrated improvement in knowing what language to use to tell a family that their child has died.
Conclusion: This study demonstrates that a portable reference card may be a convenient, simple, and useful component of education for pediatric residents in end-of-life care management. This reference card is a foundation from which to develop a standardized educational tool. Additional research is required to assess the impact of this type of intervention in pediatric palliative care education.
Emily M Balkin; Katherine Ort; Robert Goldsby; Jessica Duvall; Cynthia D Kim
Journal Of Palliative Medicine
2016
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doi:10.1089/jpm.2016.0247
Aligning Guidelines And Medical Practice: Literature Review On Pediatric Palliative Care Guidelines
Cancer; Children & Youth; Death & Dying; Families & Family Life; Hospice Care; Literature Reviews; Medical Prognosis; Pain Management; Palliative Care; Pediatric Nursing; Pediatrics; Quality Of Care
Objective: Palliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains problematic. This literature review aims to identify barriers and recommendations for proper implementation of palliative care for children through the looking glass of PPC guidelines. Method: To identify studies on PPC guidelines, five databases were searched systematically between 1960 and 2015: Scopus, PubMed, PsycINFO, the Web of Science, and CINAHL. No restrictions were placed on the type of methodology employed in the studies. Results: Concerning barriers, most of the papers focused on gaps within medical practice and the lack of evidence-based research. Common recommendations therefore included: training and education of healthcare staff, formation of a multidisciplinary PPC team, research on the benefits of PPC, and raising awareness about PPC. A small number of publications reported on the absence of clear guidance in PPC documents regarding bereavement care, as well as on the difficulties and challenges involved in multidisciplinary care teams. Significance of results: Our results indicate that a critical assessment of both the research guidelines and medical practice is required in order to promote timely implementation of PPC for pediatric patients.;OBJECTIVEPalliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains problematic. This literature review aims to identify barriers and recommendations for proper implementation of palliative care for children through the looking glass of PPC guidelines.METHODTo identify studies on PPC guidelines, five databases were searched systematically between 1960 and 2015: Scopus, PubMed, PsycINFO, the Web of Science, and CINAHL. No restrictions were placed on the type of methodology employed in the studies.RESULTSConcerning barriers, most of the papers focused on gaps within medical practice and the lack of evidence-based research. Common recommendations therefore included: training and education of healthcare staff, formation of a multidisciplinary PPC team, research on the benefits of PPC, and raising awareness about PPC. A small number of publications reported on the absence of clear guidance in PPC documents regarding bereavement care, as well as on the difficulties and challenges involved in multidisciplinary care teams.SIGNIFICANCE OF RESULTSOur results indicate that a critical assessment of both the research guidelines and medical practice is required in order to promote timely implementation of PPC for pediatric patients.;
De Clercq E; Rost M; Pacurari N; Elger BS; Wangmo T
Palliative and Supportive Care
2017
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<a href="https://www.cambridge.org/core/journals/palliative-and-supportive-care/article/abs/aligning-guidelines-and-medical-practice-literature-review-on-pediatric-palliative-care-guidelines/630EB6CB7D3372E6F66B839BB1E05AC8">10.1017/S1478951516000882</a>
Effectiveness Of Pain And Symptom Management Training For Paediatric Clinicians
Education; Paediatric Clinicians; Paediatric Palliative Care; Pain Management; Symptom Management
Pain and symptom management is the most important area of paediatric palliative care, but clinicians often receive little training in this area. Our research evaluated the effectiveness of pain and symptom management training among paediatric professionals. A quasi-experimental pretest-posttest study was used. Fifty-three paediatric nurses and 18 paediatricians participated in this study for a response rate of 80%. Results showed significant main effects of training on confidence levels (p<0.001), and attitude scores (p<0.001) among paediatric clinicians in a variety of areas, with no differences in scores between paediatricians and nurses. This suggests that education can effectively increase paediatric clinicians' confidence in and attitudes towards providing pain and symptom management for children with severe illness. Further training is needed to promote interdisciplinary healthcare team work to improve the effectiveness of pain and symptom management.
Chen Young-Chuan; Peng Niang-Huei; Chen Chao-Huei; Lu Frank Leigh; Chang Yue-Cune; Liu Hsin-Li; Yeats Mark
Journal Of Research In Nursing
2017
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10.1177/1744987117690195
Multimodal Pediatric Pain Management (part 2)
analgesia; integrative strategies; multimodal; pediatric pain management
Dr Stefan Friedrichsdorf speaks to Commissioning Editor Jade Parker: Stefan Friedrichsdorf, MD, is medical director of the Department of Pain Medicine, Palliative Care and Integrative Medicine at Children's Hospitals and Clinics of Minnesota in Minneapolis/St Paul, MN, USA, home to one of the largest and most comprehensive programs of its kind in the country. The pain and palliative care program is devoted to control acute, chronic/complex and procedural pain for inpatients and outpatients in close collaboration with all pediatric subspecialties at Children's Minnesota. The team also provides holistic, interdisciplinary care for children and teens with life limiting or terminal diseases and their families. Integrative medicine provides and teaches integrative, nonpharmacological therapies (such as massage, acupuncture/acupressure, biofeedback, aromatherapy and self-hypnosis) to provide care that promotes optimal health and supports the highest level of functioning in all individual children's activities. In this second part of the interview they discuss multimodal (opioid-sparing) analgesia for hospitalized children in pain and how analgesics and adjuvant medications, interventions, rehabilitation, psychological and integrative therapies act synergistically for more effective pediatric pain control with fewer side effects than a single analgesic or modality.
Friedrichsdorf SJ
Pain Management
2017
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DOI: 10.2217/pmt-2016-0051
Four Steps To Eliminate Or Reduce Pain In Children Caused By Needles (part 1)
Analgesia; Clinical Study; Needle; Needle/am [adverse Device Effect]; Pain/co [complication]; Pain/pc [prevention]; Pain/th [therapy]; Acupuncture; Aromatherapy; Child; Chronic Pain/co [complication]; Chronic Pain/th [therapy]; Controlled Study; Human; Hypnosis; Injection Pain/co [complication]; Injection Pain/th [therapy]; Integrative Medicine; Minnesota; Note; Pain Clinic; Palliative Therapy; Priority Journal; Self Care; Treatment Planning; Vaccination
Friedrichsdorf SJ
Pain Management
2017
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10.2217/pmt-2016-0050
A Mind-Body Approach to Pediatric Pain Management
Acupuncture; Hypnosis; Meditation; Mind-body Medicine; Pain Management; Pediatrics; Yoga
Pain is a significant public health problem that affects all populations and has significant financial, physical and psychological impact. Opioid medications, once the mainstay of pain therapy across the spectrum, can be associated with significant morbidity and mortality. Centers for Disease and Control (CDC) guidelines recommend that non-opioid pain medications are preferred for chronic pain outside of certain indications (cancer, palliative and end of life care). Mindfulness, hypnosis, acupuncture and yoga are four examples of mind-body techniques that are often used in the adult population for pain and symptom management. In addition to providing significant pain relief, several studies have reported reduced use of opioid medications when mind-body therapies are implemented. Mind-body medicine is another approach that can be used in children with both acute and chronic pain to improve pain management and quality of life.
Brown ML; Rojas E; Gouda S
Children (basel)
2017
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<a href="https://doi.org/10.3390/children4060050" target="_blank" rel="noreferrer">10.3390/children4060050</a>
Palliative Care in Obstetrics and Gynecology
Pain Management; Perinatal Care; Advance Care Planning; Communication; Female; Genital Neoplasms Female/complications/psychology/ Therapy; Humans; Infant Newborn; Life Expectancy; Mood Disorders/etiology/therapy; Nausea/therapy; Pain/etiology; Palliative
Palliative care is specialized care for people with life-limiting illness; it focuses on symptom management and quality of life and ensures that a patient's care is concordant with her goals and values. Unlike end-of-life care, palliative care can be offered concurrently with disease-directed therapies, including when the goal is cure. Obstetrics and gynecology patients for whom palliative care is most appropriate include women with gynecologic cancer and women with a fetus or neonate with a potentially life-limiting illness. Integration of palliative care for these patients offers both clinical and health care utilization benefits, including improved symptom management, improved quality of life, and high-value care. Palliative care can be provided by palliative care specialists (specialty palliative care) or by the team treating the life-limiting illness (primary palliative care), depending on the complexity of the need. Health care providers caring for patients with life-limiting illness, including obstetrician–gynecologists, must possess a basic primary palliative care skill set, including symptom management for common symptoms such as pain and nausea and communication skills such as breaking bad news. This skill set must be taught and evaluated during training and used consistently in practice to ensure that our patients receive truly comprehensive care.
Lefkowits C; Solomon C
Journal Of Obstetrics And Gynecology
2016
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<a href="https://doi.org/10.1097/AOG.0000000000001739" target="_blank" rel="noreferrer">10.1097/AOG.0000000000001739</a>
Pain Management Concerns From the Hospice Family Caregivers' Perspective
Carers; End-of-life Care; Family Caregivers; Hospice Care; Pain Management; Pain Medications
BACKGROUND: Pain management is a challenging task for family caregivers in home hospice care. However, there are limited studies that examine the challenges regarding pain management in hospice care from family caregivers' perspectives. OBJECTIVES: To identify the challenges related to pain management faced by family caregivers in hospice care and to examine the validity of an existing framework that outlines pain management challenges for hospice family caregivers. DESIGN: We conducted a theory-driven, deductive content analysis of secondary data obtained from hospice family caregivers' interviews from a randomized clinical trial. SETTING/PARTICIPANTS: We included baseline interviews of 15 hospice caregivers of patients from hospice agencies in the States of Washington. The majority of the participants were white and female caregivers. They were spouse/partner or adult child living with the patient. RESULTS: The study identified 5 out of the 6 major themes in the original framework and confirmed that hospice family caregivers face a variety of challenges: caregiver-centric issues, caregiver's medication skills and knowledge, communication and teamwork, organizational skill, and patient-centric issues. A couple of the subthemes in the original framework were not present in our findings. We also expanded the original framework by adding 1 subtheme and revised 2 definitions in the original framework. CONCLUSION: The study provided an investigation on hospice family caregivers' difficulties in pain management. The results can inform health-care providers and researchers of family caregivers' challenges and provide insights for future designs of educational tools targeting pain management strategies, so that family caregivers can perform pain management effectively at home.
Chi NC; Demiris G; Pike KC; Washington K; Oliver DP
American Journal Of Hospice And Palliative Medicine
2017
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10.1177/1049909117729477
Pediatric palliative pain and symptom management
Child; Humans; Palliative Care; Pain; Pain Management; Analgesics; Opioid; Disease Management
Shaw TM
Pediatric Annals
2012
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Journal Article
<a href="http://doi.org/10.3928/00904481-20120727-13" target="_blank" rel="noreferrer">10.3928/00904481-20120727-13</a>
Endogenous opioids in wound-site neutrophils of sternotomy patients
Female; Humans; Male; Aged; Middle Aged; beta-Endorphin/blood; Biomarkers of Pain; Enkephalin; Biomarkers Reference List; Postoperative Period; Pain Management; Neutrophils/metabolism; Inflammation/metabolism; Flow Cytometry; Gene Expression Regulation; Dynorphins/blood; Interleukin-10/metabolism; Interleukin-4/metabolism; Methionine/blood; Sternotomy/methods; Wound Healing
Awad H; Abas M; Elgharably H; Tripathi R; Theofilos T; Bhandary S; Sai-Sudhakar C; Sen CK; Roy S
Plos One
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).
Journal Article
<a href="http://doi.org/10.1371/journal.pone.0047569" target="_blank" rel="noreferrer">10.1371/journal.pone.0047569</a>
An advance directive in two questions.
Female; Humans; Palliative Care; Aged; Resuscitation Orders; Fatal Outcome; DNAR; Pain/et [Etiology]; Advance Directives; Health care reform; Living Wills; Meningitis/et [Etiology]; Pain Management; Pancreatic Neoplasms/co [Complications]; Pancreatic Neoplasms/pa [Pathology]; Pancreatic Neoplasms/th [Therapy]
It has been two decades since advance directives have become an integral part of health care. Impediments to their optimal usage are common and multifactorial. Decisions commonly have to be made when patients are unable to do so or choose not to participate in decision making, often at the end of life. The use of two questions, 1) "If you cannot, or choose not to participate in health care decisions, with whom should we speak?" and 2) "If you cannot, or choose not to participate in decision making, what should we consider when making decisions about your care?," may accomplish the major goals of an advance directive.Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Mahon MM
Journal Of Pain And Symptom Management
2011
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2011.01.002" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2011.01.002</a>
Pain in children with cerebral palsy: a review.
Child; Humans; Pain Measurement; Nurse's Role; Severity of Illness Index; Needs Assessment; Risk Factors; Activities of Daily Living; Nursing Assessment; Child welfare; Cerebral Palsy/co [Complications]; Pain/di [Diagnosis]; Pain/et [Etiology]; Pain Management; Motor Skills; Pain
Children with cerebral palsy (CP) face many challenges including impaired motor control and coordination, functional impairment, sensory disturbances, and, sometimes, communication difficulties and cognitive deficits. Pain also may be a problem for children with CP due in part to the inherent deficits associated with the disease, as well as the invasive medical and surgical procedures and rehabilitative activities children with CP undergo on a regular basis. A review of current literature indicates pain is a common experience for children with CP and has been understudied in this population. Further emphasis and research on appropriate assessment and management strategies sensitive to the unique characteristics and limitations of children with CP are warranted.
2004
Kieckhefer GM; Engel Joyce M; Jensen MP; Labyak S
The Journal Of Neuroscience Nursing : Journal Of The American Association Of Neuroscience Nurses
2004
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Journal Article
<a href="http://doi.org/10.1097/01376517-200410000-00004" target="_blank" rel="noreferrer">10.1097/01376517-200410000-00004</a>
The Alternate Forms Reliability of the Oucher Pain Scale
Pain; PedPal Lit; Pain Management; Pain Scale
The purpose of this study was to determine the adequacy of the alternate forms reliability of three versions of the Oucher pain scale. Because the original large-sized posters were unwieldy for use by nurses with children in clinical settings, it became necessary to reduce it in size. To determine whether the resulting tools were psychometrically equivalent to the original versions of the Oucher, this study was undertaken. In a group of 3- to 12-year-old children who underwent surgical or dental procedures (n = 137), scores were obtained after the procedure on small and large versions of the Oucher. The order of presentation of the two different Ouchers was randomized. Findings revealed that correlation coefficients between the scores provided for the small and large versions of the Oucher were strong, positive, and significant for the Caucasian, African-American, and Hispanic versions in 3- to 12-year-old children. These results provided evidence of the adequacy of the alternate forms reliability of these scales.
2005
Beyer JE; Turner SB; Jones L; Young L; Onikul R; Bohaty B
Pain Management Nursing
2005
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Journal Article
<a href="http://doi.org/10.1016/j.pmn.2004.11.001" target="_blank" rel="noreferrer">10.1016/j.pmn.2004.11.001</a>
Symptoms in the palliative phase of children with cancer
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Palliative Care; Neoplasms; Pain; Pain Management; Terminal Care; Physician-Patient Relations; Parent-Child Relations; Parents; Emotions; Questionnaires; Attitude to Death; Professional-Family Relations; social support; Age Factors; caregivers; Fatigue; Fear; Anorexia; Leukemia; Treatment Failure; Gastrointestinal Diseases; Stress; Preschool; Psychological; Brain neoplasms; Mobility Limitation
BACKGROUND: The aim of the study was to make a comprehensive inventory of the physical, psychological, and social symptoms of children with cancer and their parents during the palliative phase and the extent to which health professionals address those symptoms. PROCEDURE: Forty parents of children who died 1-3 years prior to data collection (structured questionnaire) were invited to participate in the study. RESULTS: The response rate was 32 out of 40 parents (80%). Most frequently mentioned physical symptoms were pain, poor appetite, and fatigue. The children's most mentioned psychological symptoms were sadness, difficulty in talking to their parents about their feelings regarding illness and death and fear of being alone. The symptoms of fear of death of the child and fear of physical symptoms were most frequently mentioned parents' psychological symptoms. Health professionals addressed 82% of the children's physical symptoms, 43% of the children's psychological symptoms, and 56% of the parents' psychological symptoms. Parents indicated that after professional attention the proportion of children's physical symptoms that were completely or partially resolved was 18 and 26%, respectively. For children's psychological symptoms the figures were 9 and 25%, respectively, and for parents' psychological symptoms 2 and 23%, respectively. CONCLUSIONS: The burden of symptoms of the child with cancer during the palliative phase and their parents is high. Health professionals focus mainly on the physical symptoms of the child. Relief of symptoms could not be achieved for a large proportion of symptoms. Further prospective research is necessary to investigate the kind, frequency and intensity of symptoms in order to tailor optimal palliative care to the needs of both child and parent.
2007-08
Theunissen JMJ; Hoogerbrugge PM; van Achterberg T; Prins JB; Vernooij-Dassen M; van den Ende CHM
Pediatric Blood & Cancer
2007
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Journal Article
<a href="http://doi.org/10.1002/pbc.21042" target="_blank" rel="noreferrer">10.1002/pbc.21042</a>
Regional Anesthesia Approaches to Pain Management in Pediatric Palliative Care: A Review of Current Knowledge
adolescent; Child; Palliative Care; Pain Management; Nerve Block; Palliative Care; neuraxial blockade; regional anesthesia
Context Although systemic analgesic therapies are the mainstay of pain treatment in pediatric palliative care, there are cases where they fail to adequately relieve symptoms or produce side effects that undermine effectiveness. Regional anesthesia may be considered as a potential therapy for these patients. Objectives To review the literature on regional techniques in pediatric patients with life-limiting and chronic conditions, including pain from tumor infiltration, chest pain in advanced pulmonary disease, chronic abdominal pain, phantom limb pain, and spasticity and dystonia. Where relevant, the authors' clinical experiences are included. Methods References were identified by searches of PubMed from 1980 until June 2012 with related terms. Results Case reports and case series were identified for each condition. Regional anesthesia techniques performed included central neuraxial infusions, peripheral nerve and plexus blocks or infusions, neurolytic blocks, and implanted intrathecal ports and pumps for baclofen, opioids, local anesthetics, and other adjuvants. The reports described positive contributions to the management of moderate-to-severe pain. Clinical context for these techniques frequently included the failure of systemic treatments and/or intolerable medication side effects. Complications varied according to the procedure and the underlying patient pathology; however, these risks were often acceptable when the potential benefits were consistent with the overall goals of care. Conclusion The present medical literature on regional anesthesia techniques in children receiving palliative care is limited to case reports and case series. Based on this evidence, recommendations must be provisional. Careful thought and discussion with pain management specialists are encouraged when pain symptoms are inadequately managed or the treatments produce deleterious side effects.
2013-12
Rork JF; Berde CB; Goldstein RD
Journal Of Pain And Symptom Management
2013
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2013.01.004" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.01.004</a>
Pain management at home in children with cancer: A daily diary study
Pain; Pain Management; Pediatric oncology; daily diary; pain at home
Background With the transition of care of cancer patients from the hospital to the home setting, parents are largely responsible for children's pain management. Children's cancer pain is undermanaged, yet, there is little empirical data on the occurrence and management of cancer pain in the home setting. The purpose of the present study, therefore, was to employ a daily diary protocol to examine barriers to pain management of children's cancer pain by parents at home. Procedure Parent–child dyads were recruited from the Cancer Institute at a major children's hospital in Southern California. A total of 45 patient/parent pairs completed baseline data on demographic and personality characteristics, children's quality of life, and parental beliefs regarding analgesic use for children and then completed daily diaries of pain and analgesic administration for 14 consecutive days. Results Most children were reported to experience chronic pain while undergoing treatment for cancer, yet overall analgesic administration at home was low. Parents who reported misconceptions regarding analgesic use for children were less likely to administer pain medication to children. Children who were less shy, more social, or had lower quality of life were more likely to receive analgesics. Conclusions A significant proportion of children receiving outpatient treatment for cancer were rated as experiencing chronic pain and pain was not optimally managed in the home setting. Further understanding and addressing barriers to children's cancer pain management in the home setting will aid in alleviating unnecessary pain in this vulnerable patient population. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013
Fortier MA; Wahi A; Bruce C; Maurer EL; Stevenson R
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24907" target="_blank" rel="noreferrer">10.1002/pbc.24907</a>
Treatment of chronic pain in children and adolescents
SUMMARY Chronic pain in children is a poorly recognized entity that is challenging to treat and leaves many families frustrated. Often, lack of an identifiable etiology along with the complex biopsychosocial nature of this condition leads to a lengthy diagnostic odyssey and delayed treatment that exacerbates the existing problem. Effective treatment of chronic pain requires a team approach in order to deal with the various aspects of this condition. Combinations of medication along with nonpharmacologic treatments, such as physical therapy, psychological interventions and complementary therapies, are often the most effective ways of treating chronic pain rather than medication alone. Further research is needed to understand the complex biobehavioral processes involved in the development and maintenance of chronic pain. Development of targeted novel therapies as well as comparative studies of existing treatments will help to improve treatment for chronic pain in children.
2013-07
Yazdani S; Zeltzer L
Pain Management
2013
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Journal Article
<a href="http://doi.org/10.2217/pmt.13.25" target="_blank" rel="noreferrer">10.2217/pmt.13.25</a>
Ketamine for pain in adults and children with cancer: a systematic review and synthesis of the literature
Child; Humans; Neoplasms; Pain; Pain Management; Adult; Analgesics; Clinical Trials as Topic; Ketamine; Intractable
OBJECTIVE: Chronic cancer pain is often refractory and difficult to treat. Ketamine is a medication with evidence of efficacy in the treatment of chronic pain. DESIGN: This article presents a synthesis of the data on ketamine for refractory cancer pain in adults and children. RESULTS: There are five randomized, double-blind, controlled trials of ketamine use in cancer pain that demonstrate improvement in pain for some patients. There are six prospective, uncontrolled trials in cancer pain that also demonstrate improvement in pain scores for some patients. There are no randomized, controlled trials in children with cancer pain, although there are a few studies reflecting improved pain control with ketamine for children with cancer pain. Adverse events for adults on ketamine are most commonly somnolence, feelings of insobriety, nausea/vomiting, hallucinations, depersonalization/derealization, and drowsiness. However, when ketamine is combined with benzodiazepines, feelings of insobriety, hallucinations, and depersonalization/derealization are not reported. Children on ketamine have had few reported adverse effects, which include sedation, anorexia, urinary retention, and myoclonic movements. Recommended ketamine infusion dosages are from 0.05 to 0.5 mg/kg/h (intravenous or subcutaneous). Recommended oral dosages of ketamine are 0.2-0.5 mg/kg/dose two to three times daily with a maximum of 50 mg/dose three times daily. CONCLUSIONS: Despite limitations in the breadth and depth of data available, there is evidence that ketamine may be a viable option for treatment-refractory cancer pain.
2013-10
Bredlau AL; Thakur R; Korones DN; Dworkin RH
Pain Medicine (malden, Mass.)
2013
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Journal Article
<a href="http://doi.org/10.1111/pme.12182" target="_blank" rel="noreferrer">10.1111/pme.12182</a>
Neonatal palliative care: developing consensus among neonatologists using the delphi technique in portugal
Delphi Technique; decision making; infant; Pain Management; new
Pediatric palliative care in Portugal is improving, but there is still additional work to do concerning programs or guidelines for this subject. In Portugal, physicians are the stakeholders in the decision-making process with reference to the transition to palliative care in the neonatal intensive care unit, and it was considered very important to raise their awareness and motivation about neonatal palliative care. Our research was based on Catlin and Carter's protocol from 2002 and the main goal was to assess neonatologists' willingness to build a palliative care and end-of-life protocol that could be acceptable nationwide. The survey used the Delphi technique and was developed in 3 rounds. The expert panel was composed of 57 participants who represented 41% of the Portuguese neonatologists. The study was conducted via the Internet, based in a researcher-created private Web site, and e-mail was used for data collection and feedback. Neonatologists agreed on 7 areas: (1) planning (medical education, resources, and local), (2) prenatal palliative care, (3) neonatal palliative care criteria, (4) the parents (presenting neonatal palliative care to parents, including then in the daily care of newborns and in family-centered care), (5) physicians' needs, (6) pain and symptom management, and (7) end-of-life care (withholding/withdrawing ventilation and hydration/nutrition).
2013-12
Mendes JCC; Justo da Silva L
Advances In Neonatal Care
2013
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).
Journal Article
<a href="http://doi.org/10.1097/ANC.0000000000000037" target="_blank" rel="noreferrer">10.1097/ANC.0000000000000037</a>
Inpatient-based intensive interdisciplinary pain treatment for highly impaired children with severe chronic pain: randomized controlled trial of efficacy and economic effects
adolescent; Child; Female; Humans; Male; Pain Management; Pain Measurement; Follow-Up Studies; Treatment Outcome; Chronic Pain; Inpatients; Depression; Catastrophization; Anxiety; Disability Evaluation
Pediatric chronic pain, which can result in deleterious effects for the child, bears the risk of aggravation into adulthood. Intensive interdisciplinary pain treatment (IIPT) might be an effective treatment, given the advantage of consulting with multiple professionals on a daily basis. Evidence for the effectiveness of IIPT is scarce. We investigated the efficacy of an IIPT within a randomized controlled trial by comparing an intervention group (IG) (n=52) to a waiting-list control group (WCG) (n=52). We made assessments before treatment (PRE), immediately after treatment (POST), as well as at short-term (POST6MONTHS) and long-term (POST12MONTHS) follow-up. We determined a combined endpoint, improvement (pain intensity, disability, school absence), and investigated 3 additional outcome domains (anxiety, depression, catastrophizing). We also investigated changes in economic parameters (health care use, parental work absenteeism, subjective financial burden) and their relationship to the child's improvement. Results at POST showed that significantly more children in the IG than in the WCG were assigned to improvement (55% compared to 14%; Fisher P<.001; 95% confidence interval for incidence difference: 0.21% to 0.60%). Although immediate effects were achieved for disability, school absence, depression, and catastrophizing, pain intensity and anxiety did not change until short-term follow-up. More than 60% of the children in both groups were improved long-term. The parents reported significant reductions in all economic parameters. The results from the present study support the efficacy of the IIPT. Future research is warranted to investigate differences in treatment response and to understand the changes in economic parameters in nonimproved children.
2014-01
Hechler T; Ruhe A-K; Schmidt P; Hirsch J; Wager J; Dobe M; Krummenauer F; Zernikow B
Pain
2014
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).
Journal Article
<a href="http://doi.org/10.1016/j.pain.2013.09.015" target="_blank" rel="noreferrer">10.1016/j.pain.2013.09.015</a>
Use of a clinical pathway to improve the acute management of vaso-occlusive crisis pain in pediatric sickle cell disease
adolescent; Child; Female; Humans; infant; Male; Young Adult; Pain; Pain Management; Adult; Analgesics; Prognosis; Follow-Up Studies; Prospective Studies; Critical Pathways; Anemia; Preschool; Arterial Occlusive Diseases; Sickle Cell; Tertiary Care Centers
BACKGROUND: The most common, debilitating morbidity of sickle cell disease (SCD) is vaso-occlusive crisis (VOC) pain. Although guidelines exist for its management, they are generally not well-followed, and research in other pediatric diseases has shown that clinical pathways improve care. The purpose of our study was to determine whether a clinical pathway improves the acute management of sickle cell vaso-occlusive crisis (VOC) pain in the pediatric emergency department (PED). PROCEDURE: Pain management practices were prospectively investigated before and after the initiation of a clinical pathway in the PED of an urban, tertiary care center with 50,000 ED visits per year and approximately 200 active sickle cell patients. The pathway included instructions for triage, monitoring, medication administration, and timing of assessments and interventions. Data were eligible from 35 pre-pathway and 33 post-pathway visits. Primary outcome was time interval to administration of first analgesic medication. Statistical analysis was by Student's t-test, using natural-log-transformed data for outcomes with skewed distribution curves. RESULTS: Time interval to first analgesic improved from 74 to 42 minutes (P = 0.012) and to first opioid from 94 to 46 minutes (P = 0.013). The percentage of patients who received ketorolac increased from 57% to 82% (P = 0.03). Decrease in time interval to subsequent pain score assessment was not statistically significant (110 to 72 minutes (P = 0.07)), and change in pain score was not different (P = 0.25). CONCLUSIONS: The use of a clinical pathway for sickle cell VOC in the PED can improve important aspects of pain management and merits further investigation and implementation.
2014-04
Ender KL; Krajewski JA; Babineau J; Tresgallo M; Schechter W; Saroyan JM; Kharbanda A
Pediatric Blood & Cancer
2014
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).
Journal Article
<a href="http://doi.org/10.1002/pbc.24864" target="_blank" rel="noreferrer">10.1002/pbc.24864</a>
Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease
Palliative Care; Decision Making; Intensive Care Units; Referral and Consultation; Mutation; Child; Male; Pain Management; Intellectual Disability; Health Education; Parental Attitudes; Pediatric; Pediatric Care; Connective Tissue Diseases Diagnosis; Connective Tissue Diseases Familial and Genetic In Infancy and Childhood; Connective Tissue Diseases Symptoms; Connective Tissue Diseases Therapy In Infancy and Childhood; Dyspnea Drug Therapy; Face Pathology; Family Education; Fibrosis; Morphine Therapeutic Use; Clinical; Muscle; Skeletal Abnormalities
The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program Care4Rare at the Children's Hospital of Eastern Ontario, the importance of finding a name or a genetic difference or a cause for future family planning, and the role of morphine for symptom management.
Vadeboncoeur C; McHardy M
Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2017-3417" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-3417</a>
Attitudes, Beliefs, and Practices of Pediatric Palliative Care Physicians Regarding the Use of Methadone in Children with Advanced Cancer
Pediatrics; Pain Management; Methadone; Pediatric Palliative Care; Pediatric Oncology
CONTEXT: Methadone is a long-acting opioid known for its unique pharmacokinetic and pharmacodynamic properties. Most research on methadone in children is limited to its effect on the prolongation of the corrected QT (QTc) interval. OBJECTIVES: To better understand the attitudes, beliefs, and practices of pediatric palliative care physicians regarding the use of methadone in children with advanced cancer. METHODS: A survey was sent to The American Academy of Pediatrics Section of Hospice and Palliative Medicine LISTSERV(R). Information on demographics, dosing of methadone, and the use of electrocardiograms (ECGs) was collected. RESULTS: One-hundred and five respondents (91%) provide palliative care to children >/= 50% of the time, and a majority (81, 77%) prescribe methadone. Most (62, 77%) physicians were board-certified in Hospice and Palliative Medicine and most (39, 63%) certified via the direct pathway ("grandfathering"). Most physicians (57, 70%) do not use loading doses of methadone. Board-certified physicians trended towards decreasing methadone dose more (40% +/- 19%) than non-board-certified physicians (28%, +/-20%) when changing from the oral to intravenous route (p = 0.07). Respondents defined a QTc interval as "prolonged" (mean +/- SD) at 444 milliseconds (+/-68 milliseconds). The percentage of patients receiving a baseline ECG was 65% (+/-33%). The most common reason for not performing a baseline ECG was that the patient was on hospice (13, 36%). CONCLUSIONS: There are consistent practices, attitudes, and beliefs of pediatric palliative care providers with regards to methadone. More education is needed on the accurate value of a prolonged QTc interval.
Madden K; Liu D; Bruera E
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/%2010.1016/j.jpainsymman.2018.11.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.11.009</a>
A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life
caregivers; child; meta-analysis; pain management; palliative care; pediatrics; systematic review; terminal care
Background: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges could inform the development of effective interventions. Aim(s): To investigate the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end of life. Design(s): A mixed-methods systematic review and meta-analysis was undertaken (PROSPERO ID: CRD42019124797). Data sources: The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey were electronically searched from the inception of each database for qualitative, quantitative or mixed-methods studies that included data from patients, carers or healthcare professionals referring to barriers or facilitators to paediatric end-of-life symptom management. Studies underwent data extraction, quality appraisal, narrative thematic synthesis and meta-analysis. Result(s): A total of 64 studies were included (32 quantitative, 18 qualitative and 14 mixed-methods) of medium-low quality. Themes were generated encompassing barriers/facilitators experienced by carers (treatment efficacy, treatment side effects, healthcare professionals' attitudes, hospice care, home care, families' symptom management strategies) and healthcare professionals (medicine access, treatment efficacy, healthcare professionals' demographics, treatment side effects, specialist support, healthcare professionals' training, health services delivery, home care). Only one study included patients' views. Conclusion(s): There is a need for effective communication between healthcare professionals and families, more training for healthcare professionals, improved symptom management planning including anticipatory prescribing, and urgent attention paid to the patients' perspective. Copyright © The Author(s) 2020.
Greenfield K; Holley S; Schoth D E; Harrop E; Howard R F; Bayliss J; Brook L; Jassal S S; Johnson M; Wong I; Liossi C
Palliative Medicine
2020
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/10.1177/0269216320907065" target="_blank" rel="noreferrer noopener">10.1177/0269216320907065</a>
Clinical Correlates of Opioid Prescription Among Pediatric Patients With Chronic Pain
Pain Management; chronic pain; pediatric patients; opioid prescription; clinical presentation
INTRODUCTION: Up to 17%-20% of pediatric patients with chronic pain are prescribed opioid pharmacotherapy and face an increased risk of opioid misuse in adulthood. Little is known about the way clinical presentation may influence which children with chronic pain are prescribed opioids. This study examines the associations between child's and caregiver's report of child's pain, physical function, and socioemotional indices with opioid prescriptions in pediatric patients initiating treatment for chronic pain. METHODS: Participants were 1,155 pediatric patients (71.26% female, n=823) aged 8-17 years and 1 of their caregivers (89% mothers) who presented for evaluation at a tertiary care pediatric pain clinic. Data were collected from 2015 to 2019 and analyzed in 2020. RESULTS: Binary logistic regression analyses investigated the relative contribution of child's demographic, pain, and Patient-Reported Outcome Measurement Information System measures to opioid prescription status; separate models were conducted for child's and caregiver's report. Across child and caregiver models, findings were that child's age (older), pain duration (longer; child's report only), and increased physical limitations (mobility challenges and pain interference; caregiver's report only) were the most salient clinical correlates of positive opioid status. Contrary to the existing literature on adults with chronic pain, socioemotional indices (anxiety, depression, peer functioning) were nonsignificant. CONCLUSIONS: A greater understanding of how clinical presentation may relate to prescribed opioid pharmacotherapy informs the field's conceptualization of the sequelae of opioid use and misuse in the context of pediatric chronic pain.
Richardson PA; Birnie KA; Goya Arce AB; Bhandari RP
American Journal of Preventive Medicine
2020
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.amepre.2020.08.026" target="_blank" rel="noreferrer noopener">10.1016/j.amepre.2020.08.026</a>
Healthcare professionals' views of the use of oral morphine and transmucosal diamorphine in the management of paediatric breakthrough pain and the feasibility of a randomised controlled trial: A focus group study (DIPPER)
Breakthrough pain; diamorphine; focus groups; opioids; paediatrics; pain management; palliative care; terminal care
Background: Oral morphine is frequently used for breakthrough pain but the oral route is not always available and absorption is slow. Transmucosal diamorphine is administered by buccal, sublingual or intranasal routes, and rapidly absorbed. Aim(s): To explore the perspectives of healthcare professionals in the UK caring for children with life-limiting conditions concerning the assessment and management of breakthrough pain; prescribing and administration of transmucosal diamorphine compared with oral morphine; and the feasibility of a comparative clinical trial. Design/ participants: Three focus groups, analysed using a Framework approach. Doctors, nurses and pharmacists (n = 28), caring for children with life-limiting illnesses receiving palliative care, participated. Result(s): Oral morphine is frequently used for breakthrough pain across all settings; with transmucosal diamorphine largely limited to use in hospices or given by community nurses, predominantly buccally. Perceived advantages of oral morphine included confidence in its use with no requirement for specific training; disadvantages included tolerability issues, slow onset, unpredictable response and unsuitability for patients with gastrointestinal failure. Perceived advantages of transmucosal diamorphine were quick onset and easy administration; barriers included lack of licensed preparations and prescribing guidance with fears over accountability of prescribers, and potential issues with availability, preparation and palatability. Factors potentially affecting recruitment to a trial were patient suitability and onerousness for families, trial design and logistics, staff time and clinician engagement. Conclusion(s): There were perceived advantages to transmucosal diamorphine, but there is a need for access to a safe preparation. A clinical trial would be feasible provided barriers were overcome. Copyright © The Author(s) 2021.
Jamieson L; Harrop E; Johnson M; Liossi C; Mott C; Oulton K; Skene SS; Wong ICK; Howard RF
Palliative Medicine.
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/10.1177/02692163211008737" target="_blank" rel="noreferrer noopener">10.1177/02692163211008737</a>
Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative study
Epilepsy; Family Attitudes; medical cannabis; oncology; pain management; parent experiences; pediatric palliative care
BACKGROUND: Cannabis is legal for recreational and medical use in Canada. Our aim was to explore family experiences using medical cannabis for children with severe conditions in the context of legalization. METHODS: We conducted a qualitative study using semistructured interviews between April and July 2019. Participants were parents of children attending BC Children's Hospital oncology or palliative care clinics, recruited through posters, emails or referral. Participants were included if they spoke English and their child used any type of cannabis for medical purposes. Interviews included open-ended questions about the child's cannabis use. Interviews were recorded and transcribed, and thematic analysis was performed using qualitative description. RESULTS: Ten interviews were completed with 9 mothers and 1 mother-father pair. The age range of the children was 22 months to 16 years. The primary reasons for cannabis use were epilepsy (6 children) or chemotherapy management (4 children). Five major themes were identified. 1) Child and family context, and cannabis as a last resort: children were seen as severely ill; parents sought cannabis out of desperation and responsibility to their child. 2) Varied information sources informed decision-making: parents lacked resources from health care providers and sought support from social media, industry and other families. 3) Cannabis as an ambiguous medicine: cannabis was viewed as both a serious drug that doctors should prescribe and as a natural alternative health product, safe to pursue alone. 4) Perceived effects: parents perceived medical benefits with few concerns about adverse effects. 5) Legal and financial challenges: parents were willing to obtain cannabis despite high costs and uncertain legality. INTERPRETATION: Parents of children with severe conditions pursued medical cannabis despite obstacles and needed unbiased information to access alone. Scientific investigation is needed to develop pediatric medical guidelines to inform decisions.
Gibbard M; Mount D; Rassekh SR; Siden H
CMAJ Open
2021
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<a href="http://doi.org/10.9778/cmajo.20200212" target="_blank" rel="noreferrer noopener">10.9778/cmajo.20200212</a>
Oxford Textbook of Palliative Care for Children
Children; Pediatrics; Pain Management; Palliative Care
The importance of palliative care for children facing life threatening illness and their families is now widely acknowledged as an essential part of care, which should be available to all children and families, throughout the child's illness and at the end of life. The new edition of theOxford Textbook of Palliative Care for Children brings together the most up to date information, current knowledge, evidence, and developments of clinical practice in the field. The book is structured into four sections. 'Foundations of Care' describes core issues, the foundations on which paediatric palliative care is based. 'Child and Family Care' looks at different aspects of psychological, social, and cultural care for the sick child or young person, and their family.These chapters cover the time course of the illness, around the time of death and support for the bereaved family. 'Symptom Care' focuses on the uses of medication, specific symptoms, and their management. Finally, 'Delivery of Care' examines practical approaches to care in different environmentsand the needs of clinicians. Two new editors join the team from Canada and South Africa, reflecting our aims to contribute towards the development of care for children across the world, and to be a resource for both experienced clinicians and those new to the field. Comprehensive in scope, exhaustive in detail, and definitive in authority, this third edition has been thoroughly updated to cover new practices, current epidemiological data, and the evolving models that support the delivery of palliative medicine to children. This includes two new chapters, looking in detail at 'Decision Making' and 'Perinatal Care', and a new section highlighting the emerging importance of 'Palliative Care for Children in Humanitarian Crises'. This book is an essential resource for anyone who works with children worldwide.
Hain R; Goldman A; Rapoport A; Rapoport A; Meiring M
Oxford University Press
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/10.1093/med/9780198821311.001.0001" target="_blank" rel="noreferrer noopener">10.1093/med/9780198821311.001.0001</a>
Metasynthesis of Factors That Influence Parents' Participation in Pain Management for Their Infants in the NICU
Parents/psychology; Newborn Infant; Professional-Patient Relations; Patient Satisfaction; Qualitative Research; Nicu; Quality of Health Care/standards; qualitative research; pain management; Neonatal Intensive Care Unit Standards; Patient Participation/methods/psychology; parents’ participation; Pain Management/methods/standards/trends; Parenting/psychology/trends
OBJECTIVE: To metasynthesize the results of qualitative studies on the factors that affect parents' participation in pain management for their infants during procedures in the NICU. DATA SOURCES: We conducted a literature search for articles published from 1976 through November 2019 using MeSH terminology in the following databases: MEDLINE, CINAHL Plus, EMBASE, PubMed, PsycINFO, Cochrane, Scopus, and Web of Science. All qualitative studies in which researchers explored parental participation and education in the NICU were included. STUDY SELECTION: A total of 29,937 articles were returned. Once we removed duplicates and limited results to qualitative studies, 48 articles remained. We excluded 41 articles because the studies reported were not conducted in NICUs, involved neonatal palliative care, or were review or opinion articles. We included seven articles for review. DATA EXTRACTION: Two authors reviewed all articles using the Critical Appraisal Skills Programme tool to assess study quality and independently scored each study. We reviewed and extracted authors, publication date, type of study, sample size, results, themes, and quotes and included these data elements in the analysis. DATA SYNTHESIS: We used a thematic synthesis technique to review the qualitative data, entered codes into NVivo software, and compared codes to create descriptive themes. From these descriptive themes, we generated four analytic themes: Learning to Parent a Hospitalized Infant, Stress and Anxiety, Health Care Providers as Gatekeepers, and NICU Environment. CONCLUSION: The four themes identified in this qualitative metasynthesis represent the factors that affect parents' abilities to participate in their infants' pain management. Further research is recommended to develop interventions that address these factors to optimize parents' participation in pain management for their infants during procedures in the NICU.
McNair C; Chinian N; Shah V; McAllister M; Franck LS; Stevens B; Burry L; Taddio A
Journal of Obstetric, Gynecologic, & Neonatal Nursing
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jogn.2020.02.007" target="_blank" rel="noreferrer noopener">10.1016/j.jogn.2020.02.007</a>
Healthcare professionals' experiences of the barriers and facilitators to paediatric pain management in the community at end-of-life: A qualitative interview study
Caregivers; palliative care; paediatrics; parents; qualitative research; pain management; end-of-life
CONTEXTS: Inadequate pain management in community paediatric palliative care is common. Evidence to inform improved pain management in this population is limited. OBJECTIVES: To explore the barriers and facilitators to paediatric community-based pain management for infants, children and young people at end-of-life as perceived by healthcare professionals. METHODS: A qualitative interview study was conducted. Semi-structured interviews were undertaken with 29 healthcare professionals; 12 nurses, five GPs, five consultants and registrar doctors, two pharmacists and five support therapists working in primary, secondary or tertiary care in the United Kingdom and involved in community end-of life care of 0-18-year-olds. RESULTS: The data corpus was analysed using an inductive thematic analysis and seven themes emerged: parents' abilities, beliefs and wellbeing; working relationships between families and healthcare professionals, and between healthcare teams; healthcare professionals' knowledge, education and experience; health services delivery; nature of pain treatment; and paediatric-specific factors. Across themes, the concepts of partnership working between families and healthcare professionals, and within healthcare teams, and sharing expertise were prevalent. CONCLUSION: Partnership working and trust between healthcare professionals and parents, and within healthcare teams, is needed for effective at-home paediatric palliative pain management. Community healthcare professionals require more education from experienced multidisciplinary teams to effectively manage paediatric pain at end-of-life and prevent emergency hospice or hospital admissions, particularly during the COVID-19 pandemic.
Greenfield DK; Carter B; Harrop DE; Jassal DS; Bayliss MJ; Renton DK; Holley DS; Howard DRF; Johnson MM; Liossi C
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2021.06.026" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.06.026</a>
Canadian surveillance study of complex regional pain syndrome in children
Complex Regional Pain Syndrome; Incidence; Pain Management; Pediatrics; Population Surveillance
This study describes the minimum incidence of pediatric complex regional pain syndrome (CRPS), clinical features, and treatments recommended by pediatricians and pain clinics in Canada. Participants in the Canadian Paediatric Surveillance Program (CPSP) reported new cases of CRPS aged 2-18 years monthly and completed a detailed case reporting questionnaire from September 2017 to August 2019. Descriptive analysis was completed and the annual incidence of CRPS by sex and age groupings was estimated. A total of 198 cases were reported to CPSP, 168 (84.8%) met the case definition. The minimum Canadian incidence of CRPS is estimated at 1.14/100 000 (95% CI 0.93 to 1.35/100 000) children per year. Incidence was highest among females 12 years and older (3.10, 95% CI 2.76 to 3.44/100 000). Mean age of CRPS diagnosis was 12.2 years (SD=2.4) with mean time from symptom onset to diagnosis of 5.6 months (SD=9.9) and no known inciting event for 19.6% of cases. The majority of cases had lower limb involvement (79.8%). Nonsteroidal anti-inflammatory drugs (82.7%) and acetaminophen (66.0%) were prescribed more commonly than antiepileptic drugs (52.3%) and antidepressants (32.0%). Referrals most commonly included physical therapy (83.3%) and multidisciplinary pain clinics (72.6%); a small number of patients withdrew from treatment due to pain exacerbation (5.3%). Pain education was recommended for only 65.6% of cases. Treatment variability highlights the need for empiric data to support treatment of pediatric CRPS and development of treatment consensus guidelines.
Baerg KL; Tupper SM; Chu LM; Cooke N; Dick BD; Doré-Bergeron MJ; Findlay S; Ingelmo PM; Lamontagne C; Mesaroli G; Oberlander T; Poolacherla R; Spencer AO; Stinson J; Finley GA
PAIN
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/10.1097/j.pain.0000000000002482" target="_blank" rel="noreferrer noopener">10.1097/j.pain.0000000000002482</a>
Palliative Sedation Therapy Practice Comparison – A Survey of Pediatric Palliative Care and Pain Management Specialists
Dexmedetomidine; End of Life; Pain Management; Palliative Care; Palliative Sedation Therapy; Propofol; Symptom Management
Context: Palliative sedation therapy (PST) can relieve suffering at end-of-life (EOL) in children with intolerable and refractory symptoms. However, updated and consistent guidance on PST practices are imperative. Objectives: We investigate current variations in clinical practice and PST implementation among pediatric palliative care (PPC) and pain management (PM) specialists. Methods: We distributed an IRB-exempt electronic anonymous survey via email through the Society of Pediatric Pain Medicine, and the American Academy of Hospice and Palliative Medicine. Survey responses were collated and descriptively reported. Results: Of 83 survey responses, the majority (75%) represented large academic children’s hospitals. The distribution between PPC and pediatric pain management specialists’ responses was 60% and 40%, respectively. Most respondents reported having designated pain management and/or palliative care teams (70% and 90%, respectively). Approximately half (48%) reported following an institutional PST protocol, most not requiring formal ethics consult (69%). Only 54% of respondents noted that the Do Not Resuscitate (DNR) order was required prior to PST initiation. PST was primarily utilized for children with oncologic diagnoses (76%). The primary and secondary medications of choice for PST implementation were reported to be opioids (39%) and benzodiazepines (36%) by pain management specialists, and benzodiazepines (52%) and barbiturates (28%) by palliative care specialists. Conclusions: Our study highlights the variability in the practice and implementation of PST. Further educational efforts are key for establishing PST practices and efficient protocol development.
Cuviello A; Ang N; Morgan K; Baker JN; Anghelescu DL
American Journal of Hospice and Palliative Medicine®
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/10.1177/10499091221138298" target="_blank" rel="noreferrer noopener">10.1177/10499091221138298</a>
Integrating a Palliative Approach into the Healthcare provided by the French-African Pediatric Oncology Group's Pilot Units. Insights from a 3-year Training Program
Child; Palliative care; Adolescent; Child Preschool; Humans; Infant; Infant Newborn; Pediatrics; France; Palliative Care; Pediatrics/education; International Cooperation; Pain Management; Training; Africa; Oncology; Patient Care Team; Education Medical Continuing/methods/organization & administration; French-speaking Africa; Medical Oncology/education
Working alongside local stakeholders, members of the French-African Pediatric Oncology Group developed a 3-year program to train pediatric oncology teams from 15 French-speaking countries in Africa in using analgesics and providing palliative care. This program was rolled out in three phases: initial training, in situ assessment, and advanced training in selected topics. To access this program, multidisciplinary teams had to come up with a project to improve their existing palliative care and pain management practices, and commit themselves to implementing it. All the teams invited agreed to take part in the program, which explicitly broached a subject that is often avoided in oncology teaching. The first phase was rolled out in 2017, with 65 trainees from 19 units attending one of three sessions held in Dakar, Senegal, Abidjan, Cote d'Ivoire, and Rabat, Morocco. The subsequent assessment revealed that only half the teams had started to implement their projects. The advanced training phase was therefore adjusted accordingly. A collective training session held in Marseille was attended by 15 trainees from seven teams whose projects were already underway, while in situ mentoring was provided for six other teams, through French-African twinnings in four cases. The length and openness of the program meant that we were able to identify and share the units' diverse realities, and fine-tune their projects accordingly, as well as plan ways of continuing the training both locally and collectively. Copyright © 2020 French Society of Pediatrics
Edan C; Yao AJJ; Hessissen L; Moreira C; Viallard ML; Poulain P; Calmanti S; Thinlot C; Aubier F; Doucot MS; Gagnepain-Lacheteau A; Patte C
Archives de Pediatrie
2021
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<a href="http://doi.org/10.1016/j.arcped.2020.12.002" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2020.12.002</a>
Palliative Care in High and Low Resource Countries
palliative care; pediatric palliative care; coordination; pain management; human development index; individualized care planning
Palliative Care (PC) is defined by the World Health Organization (WHO) as a support given by multiple disciplines in order to improve the quality of life of both patients and their caregivers, throughout the disease course, from diagnosis to end-of-life. PC aims to prevent and treat symptoms and side effects of the disease and its treatment. PC is well developed in most high income countries; however in most low income settings, where, approximately 80% of patients with cancer requiring PC care for advanced disease live, PC services are still uncommon. Health indicators monitoring global PC development are policy, education, use of medicines, service provision and professional activity. Globally PC development may be categorized as: Group 1 (no known hospice-PC activity), Group 2 (capacity-building activity), Groups 3a Isolated PC provided, 3b Generalized PC provided, 4a hospice-PC services at a stage of integration into regular service provision and 4b hospice-PC services at a stage of advanced integration into regular service provision. Spirituality is an essential element of patient-centered PC. The use of complementary and traditional medicine (CTM) in Middle Eastern countries is widespread. There are wide discrepancies in cancer care and PC in many regions in the world. The Individualized Care Planning and Coordination (ICPC) Model is designed to facilitate the advance care planning with continuity of all the measures like symptom control or emotional, social and spiritual care of both the patient and the family during the disease steps like relapse or end of life.
Kebudi R; Cakir FB; Silbermann M
Current Pediatric Reviews
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/10.2174/1573396317666210405143649" target="_blank" rel="noreferrer noopener">10.2174/1573396317666210405143649</a>
Regional blocks for pain control at the end of life in pediatric oncology
palliative care; end of life; pain management; pediatric oncology; continuous nerve block; single-shot nerve block
BACKGROUND: Pain management at the end of life is a fundamental aspect of care and can improve patients' quality of life. Interventional approaches may be underutilized for pediatric cancer patients. OBJECTIVE: To describe a single institution's 10 years of experience with regional pain management at the end of life in pediatric oncology. METHODS: A retrospective cohort study of 27 patients with pediatric cancer who died between April 2011 and December 2021 and received continuous nerve block (CNB) catheters or single-shot nerve blocks (SSBs) during their last three months of life. The type of blocks, analgesic efficacy, and palliative care involvement were evaluated. RESULTS: Twenty-two patients (81.5%) had solid tumor diagnoses, including carcinomas, sarcomas, and neuroblastoma. Most (59%) patients received CNB catheters, and 12 patients (44%) received SSBs for pain control. The mean pain score decreases for CNB catheters and SSBs after interventions were -2.5 and -2.8, respectively, on an 11-point scale. Decreases in opioid patient-controlled analgesia dosing requirements were noted in 56% of patients with CNB catheters; likewise, in 25% of patients with SSBs at 24 h and in 8% at 5 days after interventions. Nearly all patients had PC involvement and received care from pain specialists (96% and 93%, respectively). Twenty-three (85%) had physician orders for scope of treatment orders completed before death. CONCLUSION: Regional pain control interventions can be effective and safe for relieving regional pain and suffering in dying children and young adults. The collaboration between palliative care and pain management specialists at the end of life can help alleviate suffering and improve quality of life.
Cuviello A; Cianchini de la Sota A; Baker J; Anghelescu D
Frontiers in Pain Research
2023
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<a href="http://doi.org/10.3389/fpain.2023.1127800" target="_blank" rel="noreferrer noopener">10.3389/fpain.2023.1127800</a>