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BACKGROUND: Drug shortages are a common issue that healthcare systems face and can result in adverse health outcomes for patients requiring inferior alternate treatment. The United States recently experienced a national drug shortage of intravenous immunoglobulin (IVIG). Several reported strategies to address the IVIG and other drug shortages have been proposed; however, there is a lack of evidence-based methods for protocol development and implementation. OBJECTIVE: To evaluate the efficacy of introducing a multidisciplinary task force and tier system of indications and to minimize adverse effects during a shortage of IVIG. METHODS: Faculty members across disciplines with expertise in IVIG use were invited to participate in a task force to address the shortage and ensure adequate supply for emergent indications. A tier system of IVIG indications was established according to the severity of diagnosis, urgency of indication, and quality of supporting evidence. Based on inventory, indications in selected tiers were auto-approved. Orders that could not be automatically approved were escalated for task force review. RESULTS: Overall, there were 342 distinct requests for IVIG during the study period (August 1, 2019 to December 31, 2019). All Tier 1 indications were approved. Of all requests, only 2.6% (9) of requests were denied, none of which resulted in adverse effects based on retrospective chart review. Seven patients who regularly receive IVIG had possible adverse effects due to dose reduction or spacing of treatment; however, each complication was multifactorial and not attributed to the shortage or tier system implementation alone. CONCLUSION: Implementation of a multidisciplinary task force and tier system to appropriately triage high-priority indications for limited pharmaceutical agents should be considered in health institutions faced with a drug shortage.
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Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Imunoglobulinas Intravenosas , Criança , Humanos , Imunoglobulinas Intravenosas/efeitos adversos , Estudos Retrospectivos , Atenção Terciária à Saúde , Centros de Atenção Terciária , Injeções Intravenosas , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/tratamento farmacológicoRESUMO
OBJECTIVE: To describe and conceptualize high-quality care for long-stay pediatric intensive care unit (PICU) patients using group concept mapping (GCM). STUDY DESIGN: We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional multidisciplinary panel. Participants completed the prompt "For PICU patients and families experiencing prolonged lengths of stay, high quality care from the medical team includes ______", with unlimited free text responses. Responses were synthesized into individual statements, then panelists sorted them by idea similarity and rated them by perceived importance. Statement analysis using GCM software through GroupWisdom generated nonoverlapping clusters representing domains of high-quality care. RESULTS: Participants submitted 265 prompt responses representing 313 unique ideas, resulting in 78 final statements for sorting and rating. The resultant cluster map best representing the data contained 8 domains: (1) Family-Centered Care and Shared Decision Making, (2) Humanizing the Patient, (3) Clinician Supports and Resources, (4) Multidisciplinary Coordination of Care, (5) Family Well-Being, (6) Anticipatory Guidance and Care Planning, (7) Communication, and (8) Continuity of Care. CONCLUSIONS: GCM empowered a panel of healthcare professionals and parents to explicitly describe and conceptualize high-quality care for patients and families experiencing prolonged PICU stays. This information will aid the effort to address shortcomings of transitory PICU care models.
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Comunicação , Unidades de Terapia Intensiva Pediátrica , Humanos , Criança , Pais , Qualidade da Assistência à Saúde , Pessoal de SaúdeRESUMO
OBJECTIVE: Admission to the PICU may result in substantial short- and long-term morbidity for survivors and their families. Engaging caregivers in discussion of prognosis is challenging for PICU clinicians. We sought to summarize the literature on prognostic, goals-of-care conversations (PGOCCs) in the PICU in order to establish current evidence-based practice, highlight knowledge gaps, and identify future directions. DATA SOURCES: PubMed (MEDLINE and PubMed Central), EMBASE, CINAHL, PsycINFO, and Scopus. STUDY SELECTION: We reviewed published articles (2001-2022) that examined six themes within PGOCC contextualized to the PICU: 1) caregiver perspectives, 2) clinician perspectives, 3) documentation patterns, 4) communication skills training for clinicians, 5) family conferences, and 6) prospective interventions to improve caregiver-clinician communication. DATA EXTRACTION: Two reviewers independently assessed eligibility using Preferred Reporting Items for Systematic Reviews and Meta-Analysis methodology. DATA SYNTHESIS: Of 1,420 publications screened, 65 met criteria for inclusion with several key themes identified. Parent and clinician perspectives highlighted the need for clear, timely, and empathetic prognostic communication. Communication skills training programs are evaluated by a participant's self-perceived improvement. Caregiver and clinician views on quality of family meetings may be discordant. Documentation of PGOCCs is inconsistent and most likely to occur shortly before death. Only two prospective interventions to improve caregiver-clinician communication in the PICU have been reported. The currently available studies reflect an overrepresentation of bereaved White, English-speaking caregivers of children with known chronic conditions. CONCLUSIONS: Future research should identify evidence-based communication practices that enhance caregiver-clinician PGOCC in the PICU and address: 1) caregiver and clinician perspectives of underserved and limited English proficiency populations, 2) inclusion of caregivers who are not physically present at the bedside, 3) standardized communication training programs with broader multidisciplinary staff inclusion, 4) improved design of patient and caregiver educational materials, 5) the development of pediatric decision aids, and 6) inclusion of long-term post-PICU outcomes as a measure for PGOCC interventions.
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Comunicação , Objetivos , Humanos , Criança , Estudos Prospectivos , Prognóstico , Unidades de Terapia Intensiva PediátricaRESUMO
OBJECTIVES: To determine the prevalence of the utilization of primary intensivists and primary nurses for long-stay patients in large, academic PICU and ascertain how these practices are operationalized and perceived. DESIGN: A cross-sectional survey. SETTING: U.S. PICUs with accredited Pediatric Critical Care Medicine fellowships. SUBJECTS: One senior physician and one senior nurse at each institution. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: Separate but largely analogous questionnaires for intensivists and nurses were created using an iterative process to enhance content/face validity and readability. Sixty-seven intensivists (representing 93% of the 72 institutions with fellowship programs and their PICUs) and 59 nurses (representing 82%) responded. Twenty-four institutions utilize primary intensivists; 30 utilize primary nurses; and 13 utilize both. Most institutions use length of stay and/or other criteria (e.g., medical complexity) for eligibility. Commonly, not all patients that meet eligibility criteria receive primaries. Primary providers are overwhelmingly volunteers, and often only a fraction of providers participate. Primary intensivists at a large majority (>75%) of institutions facilitate information sharing and decision-making, attend family/team meetings, visit patients/families regularly, and are otherwise available upon request. Primary nurses at a similar majority of institutions provide consistent bedside care, facilitate information sharing, and attend family/team meetings. A large majority of respondents thought that primary intensivists increase patient/family satisfaction, reduce their stress, improve provider communication, and reduce conflict, whereas primary nurses similarly increase patient/family satisfaction. More than half of respondents shared that these practices can sometimes require effort (e.g., time and emotion), complicate decision-making, and/or reduce staffing flexibility. CONCLUSIONS: Primary practices are potential strategies to augment rotating PICU care models and better serve the needs of long-stay and other patients. These practices are being utilized to varying extents and with some operationalization uniformity at large, academic PICUs.
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Comunicação , Unidades de Terapia Intensiva Pediátrica , Criança , Humanos , Estudos Transversais , Inquéritos e Questionários , Disseminação de InformaçãoRESUMO
OBJECTIVES: To develop consensus statements on continuity strategies using primary intensivists, primary nurses, and recurring multidisciplinary team meetings for long-stay patients (LSPs) in PICUs. PARTICIPANTS: The multidisciplinary Lucile Packard Foundation PICU Continuity Panel comprising parents of children who had prolonged PICU stays and experts in several specialties/professions that care for children with medical complexity in and out of PICUs. DESIGN/METHODS: We used modified RAND Delphi methodology, with a comprehensive literature review, Delphi surveys, and a conference, to reach consensus. The literature review resulted in a synthesized bibliography, which was provided to panelists. We used an iterative process to generate draft statements following panelists' completion of four online surveys with open-ended questions on implementing and sustaining continuity strategies. Panelists were anonymous when they voted on revised draft statements. Agreement of 80% constituted consensus. At a 3-day virtual conference, we discussed, revised, and re-voted on statements not reaching or barely reaching consensus. We used Grading of Recommendations Assessment, Development, and Evaluation to assess the quality of the evidence and rate the statements' strength. The Panel also generated outcome, process, and balancing metrics to evaluate continuity strategies. RESULTS: The Panel endorsed 17 consensus statements in five focus areas of continuity strategies (Eligibility Criteria, Initiation, Standard Responsibilities, Resources Needed to Implement, Resources Needed to Sustain). The quality of evidence of the statements was low to very low, highlighting the limited evidence and the importance of panelists' experiences/expertise. The strength of the statements was conditional. An extensive list of potential evaluation metrics was generated. CONCLUSIONS: These expert/parent-developed consensus statements provide PICUs with novel summaries on how to operationalize, implement, and sustain continuity strategies for LSP, a rapidly growing, vulnerable, resource-intensive population in PICUs.
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Benchmarking , Cognição , Criança , Humanos , Consenso , Pais , Unidades de Terapia Intensiva PediátricaRESUMO
OBJECTIVE: Pediatric inpatient bed availability is increasingly constrained by the prolonged hospitalizations of children with medical complexity. The sickest of these patients are chronic critically ill and often have protracted intensive care unit (ICU) stays. Numbers and characteristics of infants with chronic critical illness are unclear, which undermines resource planning in ICU's and general pediatric wards. The goal of this study was to describe infants with chronic critical illness at six academic institutions in the United States. STUDY DESIGN: Infants admitted to six academic medical centers were screened for chronic, critical illness based on a combination of prolonged and repeated hospitalizations, use of medical technology, and chronic multiorgan involvement. Data regarding patient and hospitalization characteristics were collected. RESULTS: Just over one-third (34.8%) of pediatric inpatients across the six centers who met eligibility criteria for chronic critical illness were <12 months of age. Almost all these infants received medical technology (97.8%) and had multiorgan involvement (94.8%). Eighty-six percent (115/134) had spent time in an ICU during the current hospitalization; 31% were currently in a neonatal ICU, 34% in a pediatric ICU, and 17% in a cardiac ICU. Among infants who had been previously discharged home (n = 55), most had been discharged with medical technology (78.2%) and nearly all were still using that technology during the current readmission. Additional technologies were commonly added during the current hospitalization. CONCLUSION: Advanced strategies are needed to plan for hospital resource allocation for infants with chronic critical illness. These infants' prolonged hospitalizations begin in the neonatal ICU but often transition to other ICUs and general inpatient wards. They are commonly discharged with medical technology which is rarely weaned but often escalated during subsequent hospitalizations. Identification and tracking of these infants, beginning in the neonatal ICU, will help hospitals anticipate and strategize for inpatient bed management. KEY POINTS: · 35% of inpatients with chronic critical illness are infants.. · Nearly 90% of these infants spend some time in an intensive care unit.. · 78% are discharged with medical technology..
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Estado Terminal , Unidades de Terapia Intensiva Neonatal , Criança , Doença Crônica , Estado Terminal/terapia , Hospitais Pediátricos , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva , Unidades de Terapia Intensiva Pediátrica , Estados UnidosRESUMO
Clinical ethicists move in different environments and interface with a variety of stakeholders, and are therefore uniquely positioned to answer the call for equity and anti-racism. We describe why a clinical ethicist should contribute to anti-racism efforts and describe general approaches for addressing racism across institutional contexts, including: (1) addressing racism as bedside clinical ethics consultant, (2) addressing wider lens of anti-racism work across multiple ethics consults over time, and (3) addressing racism at the organizational level.
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Eticistas , Consultoria Ética , Consultores , Atenção à Saúde , Ética Clínica , HumanosRESUMO
OBJECTIVES: When contemplating tracheostomy placement in a pediatric patient, a family-physician conference is often the setting for the disclosure of risks and benefits of the procedure. Our objective was to compare benefits and risks of tracheostomy presented during family-physician conferences to an expert panel's recommendations for what should be presented. DESIGN: We conducted a retrospective review of 19 transcripts of audio-recorded family-physician conferences regarding tracheostomy placement in children. A multicenter, multidisciplinary expert panel of clinicians was surveyed to generate a list of recommended benefits and risks for comparison. Primary analysis of statements by clinicians was qualitative. SETTING: Single-center PICU of a tertiary medical center. SUBJECTS: Family members who participated in family-physician conferences regarding tracheostomy placement for a critically ill child from April 2012 to August 2014. MEASUREMENTS AND MAIN RESULTS: We identified 300 physician statements describing benefits and risks of tracheostomy. Physicians were more likely to discuss benefits than risks (72% vs 28%). Three broad categories of benefits were identified: 1) tracheostomy would limit the impact of being in the PICU (46%); 2) perceived obstacles of tracheostomy can be overcome (34%); and 3) tracheostomy optimizes respiratory health (20%). Risks fell into two categories: tracheostomy involves a big commitment (71%), and it has complications (29%). The expert panel's recommendations were similar to risks and benefits discussed during family conferences; however, they suggested physicians present an equal balance of discussion of risks and benefits. CONCLUSIONS: When discussing tracheostomy placement, physicians emphasized benefits that are shared by physicians and families while minimizing the risks. The expert panel recommended a balanced approach by equally weighing risks and benefits. To facilitate educated decision making, physicians should present a more extensive range of risks and benefits to families making this critical decision.
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Tomada de Decisões , Consentimento dos Pais , Padrões de Prática Médica , Relações Profissional-Família , Traqueostomia , Estado Terminal , Feminino , Humanos , Lactente , Unidades de Terapia Intensiva Pediátrica , Masculino , Pesquisa Qualitativa , Estudos Retrospectivos , Medição de Risco , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To assess sources of support and guidance on which parents rely when making difficult decisions in the pediatric intensive care unit and to evaluate associations of sources of support and guidance to anxiety, depression, and positive and negative affect. STUDY DESIGN: This was a prospective cohort study of 86 English-speaking parents of 75 children in the pediatric intensive care unit at The Children's Hospital of Philadelphia who were hospitalized greater than 72 hours. Parents completed standardized instruments and a novel sources of support and guidance assessment. RESULTS: Most parents chose physicians, nurses, friends, and extended family as their main sources of support and guidance when making a difficult decision. Descriptive analysis revealed a broad distribution for the sources of support and guidance items related to spirituality. Parents tended to fall into 1 of 2 groups when we used latent class analysis: the more-spiritual group (n = 47; 55%) highly ranked "what my child wants" (P = .023), spouses (P = .002), support groups (P = .003), church community (P < .001), spiritual leader (P < .001), higher power (P < .001), and prayer (P < .001) compared with the less-spiritual group (n = 39; 45%). The more-spiritual parents had greater positive affect scores (P = .005). Less-spiritual parents had greater depression scores (P = .043). CONCLUSIONS: Parents rely most on physicians, nurses, and friends and extended family when making difficult decisions for their critically ill child. Respondents tended to fall into 1 of 2 groups where the more-spiritual respondents were associated with greater positive affect and may be more resistant to depression.
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Tomada de Decisões , Aconselhamento Diretivo , Unidades de Terapia Intensiva Pediátrica , Pais/psicologia , Grupos de Autoajuda , Adolescente , Afeto , Ansiedade/epidemiologia , Criança , Pré-Escolar , Estudos de Coortes , Depressão/epidemiologia , Feminino , Humanos , Lactente , Masculino , Estudos Prospectivos , Adulto JovemRESUMO
Leishmaniosis is an important human disease very difficult to treat. For this reason, many researchers in the world have been look- ing for anti-leishmanial chemical components present in several plant species. In Costa Rica, since no studies have been done in this field, this work aimed at the search of active chemical components in local plants that may have an activity against Leishmania sp. A total of 67 plants were selected from the Alberto Manuel Brenes Biological Reserve (REBAMB). For these collected plants, fresh or dried hidroalcoholic extracts of root, stem, mature or young leaves, flowers, and immature or mature fruits, were prepared under conventional methods. All extracts were tested for their effect against a strain of Leishmania (OCR with known characteristics). Firstly, by presumptive tests, we selected only those with some activity, and then, more specific studies were done to determine the IC50 in µg/mL; a promising plant was considered only if at least one of its parts presented an IC50 < 100 µg/mL. Under this parameter, the following active plants were obtained and their lowest and highest IC50 obtained values presented (µg/mL): Bocconia frutescens (0.6 and 66.7), Clematis dioica (27.5 and 44.4), Cordia megalantha (80.0), Eugenia austin-smithi (90.6), Guarea bullata (98.8), Guateria tonduzii (44.4 and 66.3), Mikania holwayana (45.0 and 95.6), Nectandra membranacea (44.5 and 58.6), Neurolaena lobata (25.0 and 100.0), Persea povedae (76.9), Piper auritum (60.0), Rollinia pittieri (43.1), Solanum arboreum (25.8 and 72.5), Tetrorchidiumn eurphyllum (53.8 and 95.0), Witheringia solanacea (15.9 and 98.1) and Zanthoxylum juniperinum (23.4 and 97.5). Although the parasitic effect of fresh or dried extracts were almost similar, the fresh material slightly showed better results. That anti-parasitic effect occurred in one or more than four parts of the plant. Most of the active extracts did not produce lysis and aglutination which indicates a low toxicity. Since the species studied are different from those analyzed by other authors, we discuss the importance of these new findings, in relation to the new scientific knowledge, and the possible use of these plants as a leishmaniosis treatment.
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Antiprotozoários/farmacologia , Leishmania/efeitos dos fármacos , Extratos Vegetais/farmacologia , Plantas Medicinais/química , Animais , Antiprotozoários/isolamento & purificação , Costa Rica , Concentração Inibidora 50 , Testes de Sensibilidade Parasitária , Extratos Vegetais/isolamento & purificação , Plantas Medicinais/classificaçãoRESUMO
Objectives We studied the impact of a standardized continuity care intensivists (CCIs) program on patient and family outcomes for long-stay patients in the pediatric intensive care unit (PICU), also assessing the intervention's acceptability and feasibility. Methods A patient-level, unblinded randomized-controlled trial in a PICU at a large children's hospital. Participants included: (1) patients with ≥ 7 days PICU admission and likely to stay another 7 days; (2) their parents; (3) PICU attendings participating as continuity attendings; and (4) PICU attendings providing usual care (UC). We examined a bundled intervention: (1) standardized continuity attending role, (2) communication training course for CCI, and (3) standardized timing of contact between CCI and patient/family. Results Primary outcome was patient PICU length of stay. Secondary outcomes included patient, parental, and clinician outcomes. We enrolled 115 parent-patient dyads (231 subjects), 58 patients were randomized into treatment arm and 56 into the UC arm. Thirteen attendings volunteered to serve as CCI, 10 as UC. No association was found between the intervention and patient PICU length of stay ( p = 0.5), other clinical factors, or parental outcomes. The intervention met a threshold for feasibility of enrollment, retention, and implementation while the majority of providers agreed the intervention was acceptable with more efficient decision making. Thirty percent CCIs felt the role took too much time, and 20% felt time was not worth the benefits. Conclusion CCI intervention did not impact patient or family outcomes. PICU attendings believed that the implementation of the CCI program was feasible and acceptable with potential benefits for efficiency of decision making.
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Children with chronic critical illness (CCI) represent the sickest subgroup of children with medical complexity. In this article, we applied a proposed definition of pediatric CCI to assess point prevalence in medical, cardiovascular, and combined pediatric intensive care units (PICUs), screening all patients admitted to six academic medical centers in the United States on May 17, 2017, for pediatric CCI (PCCI) eligibility. We gathered descriptive data to understand medical complexity and resource needs of children with PCCI in PICUs including data regarding hospitalization characteristics, previous admissions, medical technology, and chronic multiorgan dysfunction. Descriptive statistics were used to characterize the study population and hospital data. The study cohort was divided between PICU-prolonged (stay > 14 days) and PICU-exposed (any time in PICU); comparative analyses were conducted. On the study day, 185 children met inclusion criteria, 66 (36%) PICU-prolonged and 119 (64%) PICU-exposed. Nearly all had home medical technology and most ( n = 152; 82%) required mechanical ventilation in the PICU. The PICU-exposed cohort mirrored the PICU-prolonged with a few exceptions as follows: they were older, had fewer procedures and surgeries, and had more recurrent hospitalizations. Most ( n = 44; 66%) of the PICU-prolonged cohort had never been discharged home. Children with PCCI were a sizable proportion of the unit census on the study day. We found that children with PCCI are a prevalent population in PICUs. Dividing the cohorts between PICU-prolonged and PICU-exposed helps to better understand the care needs of the PCCI population. Identifying and studying PCCI, including variables relevant to PICU-prolonged and PICU-exposed, could inform changes to PICU care models and training programs to better enable PICUs to meet their unique needs.
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OBJECTIVE: The objective of this study was to identify if family characteristics or opinions affected participation in family centered rounds. DESIGN: Observational study of 431 patient encounters on daily work rounds, followed by 100 questionnaires completed by family members of patients in the unit during observation. SETTING: PICU at a tertiary care, academic, free-standing children's hospital. SUBJECTS: Patients and families admitted to the PICU during the observation period. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: The most frequent family members present for rounds were mothers (40%). Race, educational level, age of the family member, age of the child, whether the admission was expected, and whether the family member was a medical professional had no association with whether the family member attended rounds. Both family members who were present and those who were not present felt being at rounds would improve the care of their child (87% vs. 100%, p = 0.57). A family's response that they preferred to attend rounds was the only factor associated with a higher likelihood of attending rounds (odds ratio 3.4, 95% confidence interval 1.1-10.8, p = 0.03). CONCLUSION: Families feel that participating in family centered rounds improves the care of their children. Those that like attending rounds are more likely to participate in family centered rounds, but family demographic characteristics were not associated with rounds attendance. Future studies are needed to identify barriers to family participation in family centered rounds.
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Participação da Comunidade , Família , Unidades de Terapia Intensiva Pediátrica , Adolescente , Atitude , Criança , Pré-Escolar , Intervalos de Confiança , Comportamento do Consumidor , Humanos , Lactente , Tempo de Internação , Mães , Razão de Chances , Assistência Centrada no Paciente , Relações Profissional-Paciente , Inquéritos e Questionários , Visitas de PreceptoriaRESUMO
OBJECTIVE: To assess parental decision-making preferences in the high-stress environment of the pediatric intensive care unit and test whether preferences vary with demographics, complex chronic conditions, prior admissions to the pediatric intensive care unit, and parental positive and negative emotional affect. DESIGN: Institutional Review Board-approved prospective cohort study conducted between December 2009 and April 2010. SETTING: Pediatric intensive care unit at The Children's Hospital of Philadelphia. PARTICIPANTS: Eighty-seven English-speaking parents of 75 children either <18 yrs of age or cognitively incapable of making their own decisions and who were hospitalized in the pediatric intensive care unit for >72 hrs. INTERVENTIONS: Parents were interviewed in person and completed standardized instruments that assessed decision-making preferences and parental affect. MEASUREMENTS AND MAIN RESULTS: The majority of parents in the analytic sample preferred shared decision making with their doctors (40.0%) or making the final decision/mostly making the final decision on their own (41.0%). None of the child and parent characteristics in the analytic sample were found to be significantly associated with the top decision-making preference. Using shared decision making as a reference category, we determined whether positive or negative affect scores were associated with preferring other decision-making options. We found that parents with higher positive affect were less likely to prefer self/mostly self (autonomous decision making). Increased positive affect was also associated with a reduced likelihood of preferring doctor/mostly doctor (delegating the decision), but not to a significant degree. CONCLUSIONS: Most parents in the pediatric intensive care unit prefer their role in decision making to be shared with their doctor or to have significant autonomy in the final decision. A sizeable minority, however, prefer decision-making delegation. Parental emotional affect has an association with decision-making preference.
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Tomada de Decisões , Unidades de Terapia Intensiva Pediátrica , Pais/psicologia , Participação do Paciente/psicologia , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Tempo de Internação , Masculino , Cuidados Paliativos/estatística & dados numéricos , Fatores SocioeconômicosRESUMO
Objective: To assess parental decision-making preferences when caring for a child with serious illness and to evaluate for an association between preferences and parental trust in physicians, and potential modification of this association by parental anxiety or depression. Methods: We analyzed cross-sectional data from 200 parents of 158 children in the United States who had life-threatening illnesses and whose attending physicians thought that the parents would have to make major medical decision in the next 12 to 24 months. Parents completed measures of decision-making preferences, trust in physicians, anxiety, and depression. Results: Higher reported levels of trust were associated with lower preferences for autonomous decision making (Spearman correlation = -0.24; 95% confidence interval [CI] = -0.36 to -0.01; p < 0.008). Among parents with higher levels of trust, increasing anxiety scores were associated with decreasing preference for autonomy, whereas among parents with lower levels of trust, increasing anxiety scores showed an increasing preference for autonomy (regression coefficient = -0.01; 95% CI = -0.02 to -0.001; p ≤ 0.03). Conclusions: Decreasing trust in physicians is associated with a higher preference for autonomous decision making. Parents who have higher levels of anxiety exhibit this association more strongly. Decision support for parents of children with serious illness should use strategies to respect parental decision-making preferences, address potential distrust, and provide mental health support to parents who are anxious or depressed.
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Médicos , Confiança , Ansiedade , Criança , Estudos Transversais , Tomada de Decisões , Depressão , Humanos , Pais/psicologiaRESUMO
The question of optimal disposition for children with complex medical and social circumstances has long challenged the well-intentioned clinician. The coronavirus disease 2019 pandemic created unique difficulties for patients, families, and health care providers, in addition to highlighting long-standing racial and socioeconomic inequities in health care. In pediatric hospitals, necessary public health measures such as visitor restrictions shifted many shared decision-making processes such as discharge planning from complicated to impossible. Here, we present the case of a medically complex adult (with a long-standing pediatric condition) whose surrogate decision-maker objected to discharge to a long-term care facility because of restrictions and risks associated with the coronavirus disease 2019 pandemic. We offer the commentary of experts in clinical ethics, intensive care, inpatient subacute care, and palliative care. Our discussion includes analysis of the ethical considerations involved in the case, concrete guidance on steps toward an ethically permissible discharge, and suggestions for how a health equity lens can improve communication and decision-making for families who are victims of systemic racism and economic discrimination.
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COVID-19 , Adulto , Criança , Ética Clínica , Desigualdades de Saúde , Humanos , Cuidados Paliativos , PandemiasRESUMO
BACKGROUND: Clinicians caring for neonates with congenital heart disease encounter challenges with ethical implications in daily practice and must have some basic fluency in ethical principles and practical applications. METHODS: Good ethical practice begins with a thorough understanding of the details and narrative of each individual case, examination via classic principles of bioethics, and further framing of that translation into practice. RESULTS: We explore some of these issues and expand awareness through the lens of a case presentation beginning with fetal considerations through end-of-life discussions. CONCLUSIONS: We include specific sections that bring attention to shared decision-making, research ethics, and outcomes reporting. We review empirical evidence and highlight recommendations.