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1.
Matern Child Health J ; 28(2): 303-314, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37923907

RESUMO

OBJECTIVES: Little is known about the early stress experiences of parents of infants with serious life-limiting/life-threatening conditions during the initial months after discharge from hospital. The aim of the study was to measure change, and predictors of change, in parenting stress at the time of transition from hospital to home (T1) with a medically fragile infant, and after a 3-month period (T2). METHODS: Parents of infants identified as meeting ≥ 1 palliative care referral criterion were recruited in a Midwestern United States tertiary pediatric hospital (2012-2014) within 2 weeks of hospital discharge. A repeated measures design was used to assess change on a validated parenting stress inventory over the two timepoints (T1 and T2). Fifty-two parents (61 infants) participated at T1 and 44 (85%) at T2. RESULTS: On discharge (T1) stress was moderately high 3 months post discharge (T2) overall and domain-specific stress scores improved, except stress related to parent role functioning and participation in their child's medical care. Independent predictors of improvement in overall parenting stress scores (T2-T1) were being a younger parent and having experienced prior pregnancy-related loss. CONCLUSIONS FOR PRACTICE: The time of discharge from hospital to home is often stressful for parents of medically fragile infants. Improvements were found during the first 3 months at home, but improvement was minimal for stress related to role function and providing medical care. Past experience with pregnancy-related loss and being younger were associated with improvement in stress across theoretical domains. Screening for stress should be included as part of routine pre- and post-neonatal intensive care unit discharge psychosocial assessments of parents caring for infants with serious illness to ensure their unique support needs continue to be met over time.


What is already known about the topic? Stress in parents of sick infants is well-documented in the post-birth hospitalization period. Early management of parent stress after a child is born with a life-limiting/life-threatening condition is critical in promoting healthy infant attachment and development.What this study adds? Parents of medically fragile infants experience notable stress during the initial months at home. Pre-hospital discharge attention to medical and psychosocial characteristics of infants and parents may help health care teams anticipate post-discharge parenting challenges and facilitate personalized home support strategies aimed at minimizing parent stress and poor parent­child outcomes.


Assuntos
Assistência ao Convalescente , Alta do Paciente , Recém-Nascido , Lactente , Feminino , Gravidez , Humanos , Criança , Pais/psicologia , Unidades de Terapia Intensiva Neonatal , Meio-Oeste dos Estados Unidos , Poder Familiar/psicologia
2.
Schmerz ; 35(3): 195-210, 2021 Jun.
Artigo em Alemão | MEDLINE | ID: mdl-33337532

RESUMO

INTRODUCTION: Prevention and treatment of pain in pediatric patients compared with adults is often not only inadequate but also less often implemented the younger the children are. Children 0 to 17 years are a vulnerable population. OBJECTIVES: To address the prevention and treatment of acute and chronic pain in children, including pain caused by needles, with recommended analgesic starting doses. METHODS: This Clinical Update elaborates on the 2019 IASP Global Year Against Pain in the Vulnerable "Factsheet Pain in Children: Management" and reviews best evidence and practice. RESULTS: Multimodal analgesia may include pharmacology (eg, basic analgesics, opioids, and adjuvant analgesia), regional anesthesia, rehabilitation, psychological approaches, spirituality, and integrative modalities, which act synergistically for more effective acute pediatric pain control with fewer side effects than any single analgesic or modality. For chronic pain, an interdisciplinary rehabilitative approach, including physical therapy, psychological treatment, integrative mind-body techniques, and normalizing life, has been shown most effective. For elective needle procedures, such as blood draws, intravenous access, injections, or vaccination, overwhelming evidence now mandates that a bundle of 4 modalities to eliminate or decrease pain should be offered to every child every time: (1) topical anesthesia, eg, lidocaine 4% cream, (2) comfort positioning, eg, skin-to-skin contact for infants, not restraining children, (3) sucrose or breastfeeding for infants, and (4) age-appropriate distraction. A deferral process (Plan B) may include nitrous gas analgesia and sedation. CONCLUSION: Failure to implement evidence-based pain prevention and treatment for children in medical facilities is now considered inadmissible and poor standard of care.


Assuntos
Analgesia , Criança Hospitalizada , Adulto , Analgésicos/efeitos adversos , Criança , Feminino , Humanos , Lactente , Lidocaína , Manejo da Dor
4.
Hosp Pediatr ; 14(1): 1-10, 2024 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-38044667

RESUMO

BACKGROUND AND OBJECTIVES: Quality benchmarking in pediatric palliative care (PPC) helps identify gaps in care and guides quality improvement. Our study objective was to characterize inpatient PPC referral processes, interdisciplinary PPC delivery, and patient outcomes from a multisite PPC data repository. METHODS: Cross-sectional, administrative data analysis of 1587 PPC inpatient encounters at 5 US hospitals enrolled in the Pediatric Palliative Care Quality Network (2016-2022). PPC clinicians submitted data to a national repository for key quality indicators. Program and referral characteristics, care processes, and outcomes were examined descriptively. Time to referral, time on PPC service, and total hospital length of stay were compared by discharge disposition (alive or dead). RESULTS: Programs were in service for 13 (range 6-17) years on average. Most encounters involved children >1 year old (77%). Common diagnoses were solid tumor cancer (29%) and congenital or chromosomal conditions (14%). Care was often provided by ≤2 PPC team members (53%) until discharge (median = 7d, interquartile range 2-23). There were often multiple reasons for PPC referral, including psychosocial support (78%), goals of care discussions/advance care planning (42%), management of non-pain symptoms (34%), and pain (21%). Moderate-severe symptoms improved by second assessment for pain (71%), dyspnea (51%), fatigue (46%), and feeding issues (39%). CONCLUSIONS: Referrals to PPC were made early during hospitalization for psychosocial and physical symptom management. Moderate-severe symptom distress scores at initial assessment often improved. Findings highlight the need to ensure interdisciplinary PPC team staffing to meet the complex care needs of seriously ill children.


Assuntos
Cuidados Paliativos , Encaminhamento e Consulta , Lactente , Criança , Humanos , Estudos Transversais , Estudos Retrospectivos , Hospitais Pediátricos , Dor
5.
Cancer Med ; 12(3): 3657-3669, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36073348

RESUMO

BACKGROUND: Pediatric palliative care (PPC) is a priority to improve pediatric hematology oncology (PHO) care in Eurasia. However, there are limited regional opportunities for PPC education. We describe the adaptation and implementation of a bilingual end-user Education in Palliative and End-of-Life Care (EPEC)-Pediatrics course for PHO clinicians in Eurasia. METHODS: Due to COVID-19, this course was delivered virtually, consisting of prerecorded, asynchronous lectures, and a bilingual workshop with interactive lectures and small group sessions. A pre-postcourse design was used to evaluate the knowledge acquisition of the participants including their knowledge alignment with World Health Organization (WHO) guidance, ideal timing of palliative care, and comfort in providing palliative care to their patients. Questions were mostly quantitative with multiple choice or Likert scale options, supplemented by free-text responses. RESULTS: A total of 44 (76%) participants from 14 countries completed all components of the course including pre- and postcourse assessments. Participant alignment with WHO guidance improved from 75% in the pre- to 90% in the postcourse assessments (p < 0.001). After participation, 93% felt more confident controlling the suffering of children at the end of life, 91% felt more confident in prescribing opioids and managing pain, and 98% better understood how to hold difficult conversations with patients and families. Most participants (98%) stated that they will change their clinical practice based on the skills and knowledge gained in this course. CONCLUSIONS: We present a successful regional adaptation of the EPEC-Pediatrics curriculum, including novel delivery of course content via a virtual bilingual format. This course resulted in significant improvement in participant attitudes and knowledge of PPC along with an understanding of the ideal timing of palliative care consultation and comfort in providing PPC to children with cancer. We plan to incorporate participant feedback to improve the course and repeat it annually to improve access to high-quality palliative care education for PHO clinicians in Eurasia.


Assuntos
COVID-19 , Escherichia coli Enteropatogênica , Assistência Terminal , Humanos , Criança , Currículo , Cuidados Paliativos/métodos
7.
J Pain Symptom Manage ; 63(3): 349-358, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34896279

RESUMO

CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide. OBJECTIVES: Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction. METHODS: From 2011 to 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses. RESULTS: About 172 of 786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across six continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions. CONCLUSION: EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness.


Assuntos
Pediatria , Assistência Terminal , Criança , Currículo , Humanos , Cuidados Paliativos , Inquéritos e Questionários
8.
Pediatrics ; 147(2)2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33446508

RESUMO

The dramatic increases of opioid use and misuse in the past 15 years have resulted in a focus on the responsible and judicious use of opioids. In this Ethics Rounds, the commentators analyze the case of a 16-year-old girl with lymphoma and opioid misuse whose caregiver may have diverted her opioids. She is now at the end of life and prefers to die at home. The commentators, oncologists, palliative care providers, ethicists, and a medical student agree that supporting the patient's goals and practicing good opioid stewardship are not incompatible. They identify additional information that would be required to analyze the case more fully such as the nature of the evidence for misuse and diversion and whether bias inadvertently contributed to these concerns. They agree that multimodal analgesia, including but not limited to opioids, is important. Safeguards could include a contract, directly observed therapy, and/or urine drug screens. Supervision or removal of a caregiver diverting medication or admission of the patient misusing medications would be alternatives if the initial plan was unsuccessful. Such patient-centered care requires well-developed substance misuse treatment, pain management, and home hospice that are adequately reimbursed.


Assuntos
Analgésicos Opioides/uso terapêutico , Linfoma/terapia , Transtornos Relacionados ao Uso de Opioides/terapia , Manejo da Dor/ética , Cuidados Paliativos/ética , Desvio de Medicamentos sob Prescrição/prevenção & controle , Assistência Terminal/ética , Adolescente , Cuidadores , Feminino , Humanos , Linfoma/complicações , Transtornos Relacionados ao Uso de Opioides/complicações , Manejo da Dor/métodos , Cuidados Paliativos/métodos , Equipe de Assistência ao Paciente/ética , Assistência Centrada no Paciente/ética , Assistência Centrada no Paciente/métodos , Relações Profissional-Família/ética , Assistência Terminal/métodos
9.
Pain Rep ; 5(1): e804, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32072099

RESUMO

INTRODUCTION: Prevention and treatment of pain in pediatric patients compared with adults is often not only inadequate but also less often implemented the younger the children are. Children 0 to 17 years are a vulnerable population. OBJECTIVES: To address the prevention and treatment of acute and chronic pain in children, including pain caused by needles, with recommended analgesic starting doses. METHODS: This Clinical Update elaborates on the 2019 IASP Global Year Against Pain in the Vulnerable "Factsheet Pain in Children: Management" and reviews best evidence and practice. RESULTS: Multimodal analgesia may include pharmacology (eg, basic analgesics, opioids, and adjuvant analgesia), regional anesthesia, rehabilitation, psychological approaches, spirituality, and integrative modalities, which act synergistically for more effective acute pediatric pain control with fewer side effects than any single analgesic or modality. For chronic pain, an interdisciplinary rehabilitative approach, including physical therapy, psychological treatment, integrative mind-body techniques, and normalizing life, has been shown most effective. For elective needle procedures, such as blood draws, intravenous access, injections, or vaccination, overwhelming evidence now mandates that a bundle of 4 modalities to eliminate or decrease pain should be offered to every child every time: (1) topical anesthesia, eg, lidocaine 4% cream, (2) comfort positioning, eg, skin-to-skin contact for infants, not restraining children, (3) sucrose or breastfeeding for infants, and (4) age-appropriate distraction. A deferral process (Plan B) may include nitrous gas analgesia and sedation. CONCLUSION: Failure to implement evidence-based pain prevention and treatment for children in medical facilities is now considered inadmissible and poor standard of care.

10.
Pain Rep ; 5(2): e819, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32440612

RESUMO

Pediatric tonsillectomy involves an often painful and lengthy recovery period, yet the extended recovery process is largely unknown. This article describes postoperative recovery outcomes for 121 children aged 4 to 15 (mean 6.6 years, SD = 2.3) years enrolled in 1 of 2 clinical trials of analgesia safety and efficacy after tonsillectomy. Postoperative analgesia included scheduled opioid analgesic plus acetaminophen/ibuprofen medication use (first 5 days) and "as-needed" use (last 5 days). Clinical recovery as measured daily by the Parents' Postoperative Pain Measure (PPPM; an observational/behavioral pain measure), children's self-reported pain scores, side-effect assessments, need for unanticipated medical care, and satisfaction with recovery over 10 days was assessed. Higher Parents' Postoperative Pain Measure scores were correlated with poorer sleep, receipt of breakthrough analgesics, distressing side effects, higher self-reported pain scores, and need for unanticipated medical care. Higher self-reported pain scores were associated with more distressing adverse events, including nausea, vomiting, insomnia, lower parent satisfaction, and unplanned medical visits and hospitalizations. Pain and symptoms improved over time, although 24% of the children were still experiencing clinically significant pain on day 10. Scheduled, multimodal analgesia and discharge education that sets realistic expectations is important. This study adds to the emerging body of literature that some children experience significant postoperative pain for an extended period after tonsillectomy.

11.
Children (Basel) ; 7(3)2020 Mar 11.
Artigo em Inglês | MEDLINE | ID: mdl-32168944

RESUMO

Postoperative pain treatment affects immediate and long-term outcomes in children undergoing cardiac surgery. Opioids, as part of multimodal analgesia, are effective in treating pain, however, they can be disadvantageous due to adverse side effects. Therefore, we assessed whether the local anesthetic bupivacaine as a parasternal nerve block in children post-cardiac surgery is an effective adjunct to pain management. This was a retrospective cohort study of all patients who underwent cardiothoracic surgery via median sternotomy at a large children's hospital between November 2011 and February 2014 with and without bupivacaine following the introduction of perioperative bupivacaine in late 2012 on a single unit. 62 out of 148 patients (age 3-17 years) who received bupivacaine demonstrated decreased postoperative opioid use. Within one day of surgery, patients who received bupivacaine required, on average, 0.57 mg/kg (95% CI, 0.46 to 0.68) of total morphine equivalent compared to 0.93 mg/kg (95% CI, 0.80 to 1.06) for patients who did not receive bupivacaine. This difference was statistically significant after adjusting for potential confounders (p-value = 0.002). Length of stay and intubation were shorter on average among patients who received bupivacaine, but these differences were not statistically significant after adjusting for potential confounders. The study results seem to suggest that the perioperative administration of bupivacaine may reduce opioid usage among children post-cardiotomy.

12.
Clin J Pain ; 35(6): 501-508, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30985399

RESUMO

BACKGROUND: More than 15,000 children die annually in the United States due to an underlying life-limiting disease and the majority of those children experience distressing symptoms, which are not adequately relieved, such as pain and dyspnea. Multimodal analgesia, that is multiple agents, interventions, rehabilitation, psychological modalities, and integrative (nonpharmacologic) therapies, act synergistically for more effective pediatric pain and symptom control with fewer side effects than a single analgesic or modality. However, opioids, such as morphine, fentanyl, hydromorphone, oxycodone, and methadone (in the United Kingdom: diamorphine) remain the mainstay medication to effectively treat pain and dyspnea in children with serious illness. METHODS: This article reviews commonly used opioids in Pediatric Palliative Care, which a special emphasis on 2 potentially particularly effective multimechanistic opioids: tramadol and methadone. RESULTS: Methadone, due to its multimechanistic action profile, is possibly among the most effective and most underutilized opioid analgesics in children with severe unrelieved pain at end of life. However, methadone should not be prescribed by those unfamiliar with its use: Its effects should be closely monitored for several days, particularly when it is first started and after any dose changes. CONCLUSIONS: Tramadol appears to play a key role in treating episodes of inconsolability in children with progressive neurologic, metabolic, or chromosomally based condition with impairment of the central nervous system. However, the recent 2017 United States Food and Drug Administration (FDA) warning against pediatric use of tramadol does not seem to be based on clinical evidence, and therefore puts children at risk for unrelieved pain or increased respiratory depression.


Assuntos
Analgésicos Opioides/uso terapêutico , Dispneia/tratamento farmacológico , Metadona/uso terapêutico , Dor/tratamento farmacológico , Cuidados Paliativos/métodos , Pediatria/métodos , Tramadol/uso terapêutico , Adolescente , Analgésicos Opioides/efeitos adversos , Criança , Pré-Escolar , Humanos , Lactente , Recém-Nascido , Metadona/efeitos adversos , Manejo da Dor , Tramadol/efeitos adversos
13.
Pain Manag ; 9(6): 583-596, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31735116

RESUMO

Pain is a common distressing symptom in children receiving pediatric palliative care. Both in children with cancer, but especially in children with progressive neurodegenerative and chromosomal conditions with CNS impairment pain is common, and often under-recognized and undertreated. Multimodal analgesia for children with serious illness acts synergistically for more effective pediatric pain and symptom control with fewer side effects than a single analgesic or modality. Successful pain treatment and prevention usually include integrative 'nonpharmacological' therapies, rehabilitation, psychology and spirituality in addition to pharmacology and regional anesthesia. This review article will address these effective components of multimodal pediatric analgesia and present starting doses of basic analgesia, opioids and adjuvants analgesia in infants, children and adolescents with serious illness.


Assuntos
Manejo da Dor/métodos , Dor/complicações , Adolescente , Analgesia/métodos , Analgésicos Opioides/uso terapêutico , Criança , Pré-Escolar , Terapia Combinada/métodos , Humanos , Lactente , Manejo da Dor/tendências , Cuidados Paliativos/métodos , Resultado do Tratamento
14.
Pain Rep ; 4(3): e649, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31583334

RESUMO

INTRODUCTION: Disabling chronic pain is a common experience for children and adolescents. However, the evidence base for chronic pain interventions for youth is extremely limited, which has hindered the development of evidence-based practice guidelines for most pediatric chronic pain conditions. OBJECTIVES: To review and provide recommendations on clinical trial design and evaluation in children and adolescents with chronic pain. METHODS: In this article, we summarize key issues and provide recommendations for addressing them in clinical trials of chronic pain interventions in children and adolescents and their families. RESULTS: To stimulate high-quality trials of pediatric chronic pain management interventions, attention to key issues including sample characterization, trial design and treatment administration, outcome measurement, and the ethics of intervening with children and adolescents, as opposed to adults with chronic pain, is needed. CONCLUSION: Future research to develop interventions to reduce or prevent childhood chronic pain is an important priority area, and requires special considerations in implementation and evaluation in clinical trials.

15.
J Pain Symptom Manage ; 58(4): 707-720.e3, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31220594

RESUMO

CONTEXT: Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation. OBJECTIVES: Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics. METHODS: Funded through a U.S. $1.6 million National Institutes of Health/National Cancer Institute grant 2010-2017, this 24-module curriculum was designed to teach primary palliative care. The target audience included interprofessional pediatric hematology/oncology providers and all other clinicians caring for seriously ill children. RESULTS: The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. In addition, a one-day Professional Development Workshop was developed to teach EPEC-Pediatrics graduates, future "Trainers," thus becoming "Master Facilitators." Between 2012-May 2019, a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three Professional Development Workshops. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish. Participants overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Trainers subsequently anticipated improvements in patient care for children with serious illness at their home institutions. CONCLUSION: EPEC-Pediatrics has developed into the most comprehensive PPC curriculum worldwide. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.


Assuntos
Currículo , Educação de Pós-Graduação em Medicina , Cuidados Paliativos , Pediatria/educação , Desenvolvimento de Programas , Assistência Terminal , Humanos , Modelos Educacionais
16.
Ann Palliat Med ; 7(1): 136-150, 2018 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-28866891

RESUMO

At least 8 million children would need specialized pediatric palliative care (PPC) services annually worldwide, and of the more than 42,000 children and teenagers dying annually in the United States, at least 15,000 children would require PPC. Unfortunately, even in resource-rich countries the majority of children dying from serious advanced illnesses are suffering from unrelieved, distressing symptoms such as pain, dyspnea, nausea, vomiting, and anxiety. State of the art treatment and prevention of those symptoms requires employing multi-modal therapies, commonly including pharmacology, rehabilitation, procedural intervention, psychology, and integrative modalities. This article describes the current practice of integrating hypnosis into advanced pain and symptom management of children with serious illness. Three case reports of children living with a life-limiting condition exemplify the effective use of this clinical modality to decrease distressing symptoms and suffering. Hypnosis for pediatric patients experiencing a life-limiting disease not only provides an integral part of advanced symptom management, but also supports children dealing with loss and anticipatory loss, sustains and enhances hope and helps children and adolescents live fully, making every moment count, until death.


Assuntos
Hipnose/métodos , Dor/psicologia , Cuidados Paliativos , Estresse Psicológico , Doente Terminal/psicologia , Adolescente , Criança , Humanos , Medicina Integrativa/métodos , Cuidados Paliativos/métodos , Cuidados Paliativos/organização & administração , Estresse Psicológico/fisiopatologia , Estresse Psicológico/terapia
17.
Children (Basel) ; 5(9)2018 Aug 31.
Artigo em Inglês | MEDLINE | ID: mdl-30200370

RESUMO

Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the United States alone, more than 42,000 children die every year, half of them infants younger than one year. Advanced interdisciplinary pediatric palliative care for children with serious illnesses is now an expected standard of pediatric medicine. Unfortunately, in many institutions there remain significant barriers to achieving optimal care related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing and funding. Data reveals the majority of distressing symptoms in children with serious illness (such as pain, dyspnea and nausea/vomiting) were not addressed during their end-of-life period, and when treated, therapy was commonly ineffective. Whenever possible, treatment should focus on continued efforts to control the underlying illness. At the same time, children and their families should have access to interdisciplinary care aimed at promoting optimal physical, psychological and spiritual wellbeing. Persistent myths and misconceptions have led to inadequate symptom control in children with life-limiting diseases. Pediatric Palliative Care advocates the provision of comfort care, pain, and symptom management concurrently with disease-directed treatments. Families no longer have to opt for one over the other. They can pursue both, and include integrative care to maximize the child's quality of life. Since most of the sickest children with serious illness are being taken care of in a hospital, every children's hospital is now expected to offer an interdisciplinary palliative care service as the standard of care. This article addresses common myths and misconceptions which may pose clinical obstacles to effective PPC delivery and discusses the four typical stages of pediatric palliative care program implementation.

18.
Pain Rep ; 3(Suppl 1): e671, 2018 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-30324169

RESUMO

INTRODUCTION: Pain remains common, underrecognized, and undertreated in children's hospitals and pediatric clinics. Over 200,000 patients experience needle pain annually in our institution, caused by blood draws, intravenous access, vaccinations, and injections on all inpatient units, emergency departments, outpatient laboratories, and ambulatory clinics. OBJECTIVES: We implemented a hospital-based, system-wide initiative called the "Children's Comfort Promise," and created a new standard of care for needle procedures that required staff to consistently offer 4 strategies: (1) topical anesthetics, (2) sucrose or breastfeeding for infants 0 to 12 months, (3) comfort positioning (including swaddling, skin-to-skin, or facilitated tucking for infants; sitting upright for children), and (4) age-appropriate distraction. METHODS: The protocol was established system-wide in one of the largest children's hospitals in the United States using a staggered implementation approach over a 3-year period to allow for unit-specific customization and facilitation of knowledge transfer from one unit to another. All departments were required to offer all 4 strategies with appropriate education at least 95% of the time. RESULTS: Comparison of baseline audits with continuous postimplementation audits revealed that wait times for services decreased, patient satisfaction increased, and staff concerns about implementation were allayed (eg, concerns about wait times and success rates of venipuncture after topical anesthesia). CONCLUSION: This is the first report of a successful system-wide protocol implementation to reduce or eliminate needle pain, including pain from vaccinations, in a children's hospital across all inpatient units, emergency departments, outpatient laboratories, and ambulatory clinics through consistent use of topical anesthesia, sucrose/breastfeeding, positioning, and distraction.

19.
Hosp Pediatr ; 8(9): 515-523, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-30076160

RESUMO

OBJECTIVES: Pain in hospitalized children remains under-assessed and undertreated. With this study, we aim to describe results from a repeat single-day, hospital-wide survey of children's pain and its treatment after the initiation of a hospital-wide quality improvement initiative used to reduce or eliminate pain caused by needle procedures. METHODS: All patients and parents listed on the inpatient morning census, in emergency department and outpatient surgery registration lists, were invited to participate in a brief single-day point prevalence survey of their experience with pain and its management in the hospital setting. Results were compared with a survey conducted 2 years earlier, before implementation of a system-wide Children's Comfort Promise needle pain treatment and prevention protocol. RESULTS: A total of 194 children and their parents participated in the current survey. A higher percentage of children reported having no pain compared with the previous survey (33% vs 24%; P = .07; not significant) and fewer experienced severe pain (score ≥7 out of 10). Fewer children identified pain caused by needles as the cause of the worst pain (21% vs 30%), although it remained the highest reported cause of the most painful experience overall. The number of pain management strategies administered and offered to children with needle pain (distraction, positioning, numbing cream, and sucrose and/or breastfeeding for infants) increased. CONCLUSIONS: The implementation of a mandatory Comfort Promise protocol used to minimize or prevent pain caused by elective needle procedures was associated with a significant reduction in overall pain prevalence and improved use of evidence-based practices for needle pain management.


Assuntos
Manejo da Dor/estatística & dados numéricos , Dor Processual/epidemiologia , Punções/métodos , Analgésicos/uso terapêutico , Anestésicos Locais/uso terapêutico , Aleitamento Materno , Criança , Criança Hospitalizada , Pré-Escolar , Serviço Hospitalar de Emergência , Feminino , Hospitais Pediátricos , Humanos , Lactente , Recém-Nascido , Modelos Logísticos , Masculino , Agulhas , Dor Processual/prevenção & controle , Pais , Posicionamento do Paciente , Prevalência , Sacarose/uso terapêutico , Inquéritos e Questionários , Edulcorantes/uso terapêutico , Estados Unidos/epidemiologia
20.
J Pain Symptom Manage ; 55(3): 851-863, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29155288

RESUMO

CONTEXT: Sub-Saharan Africa faces an increasing incidence and prevalence of life-limiting and life-threatening conditions. These conditions are associated with a significant burden of pain linked to high morbidity and disability that is poorly assessed and undertreated. Barriers to effective pain management partly relate to lack of access to opioid analgesia and challenges in their administration. OBJECTIVES: To identify country-specific and broader regional barriers to access, as well as the administration of opioids, and generate recommendations for advancing pain management in Southern Africa. METHODS: A parallel mixed methods design was used across three countries: Mozambique, Swaziland, and Zimbabwe. Three activities were undertaken: 1) a review of regulatory and policy documentation, 2) group interviews, and 3) a self-administered key informant survey. RESULTS: Barriers to accessing opioid analgesics for medical use include overly restrictive controlled medicines' laws; use of stigmatizing language in key documents; inaccurate actual opioid consumption estimation practices; knowledge gaps in the distribution, storage, and prescription of opioids; critical shortage of prescribers; and high out-of-pocket financial expenditures for patients against a backdrop of high levels of poverty. CONCLUSION: Policies and relevant laws should be updated to ensure that the legislative environment supports opioid access for pain management. Action plans for improving pain treatment for patients suffering from HIV or non-communicable diseases should address barriers at the different levels of the supply chain that involve policymakers, administrators, and service providers.


Assuntos
Analgésicos Opioides/uso terapêutico , Controle de Medicamentos e Entorpecentes , Acessibilidade aos Serviços de Saúde/legislação & jurisprudência , Manejo da Dor/métodos , Cuidados Paliativos/legislação & jurisprudência , Cuidados Paliativos/métodos , Adulto , Analgésicos Opioides/economia , Essuatíni , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Acessibilidade aos Serviços de Saúde/economia , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Moçambique , Manejo da Dor/economia , Cuidados Paliativos/economia , Zimbábue
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