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1.
J Palliat Med ; 2024 Jul 08.
Article de Anglais | MEDLINE | ID: mdl-38973557

RÉSUMÉ

Background: Little is known about the extent to which pediatric palliative care (PPC) clinicians are engaged in ethics consults or how they perceive interactions with ethics consultants. Objective: Describe the extent to which PPC team members serve in pediatric health care ethics (PHCE) consultancy roles and to describe their experiences interacting with pediatric ethic consultant services. Design: Online survey distributed to members of the American Academy of Pediatrics and American Academy of Hospice and Palliative Care pediatric and ethics section and special interest groups in the United States. Results: Eighty-six responses were obtained (response rate 45%) from PPC teams in 70 different children's hospitals located in 34 states. Almost all (97%) reported a functional ethics consult service such that PPC is not expected to meet the ethics need of the institution. A person involved on the PPC team also performed ethics consults in half (49%) of the settings, predominantly the PPC physician. Most respondents who perceive PPC teams engage in ethics-relevant work as part of their everyday PPC work. Formal ethics training was lacking among PPC members involved in ethics consults with few ethics degrees (15%), certifications (6%), or fellowships (2%). Discord (67%), conflict (49%), limitations to treatment (48%), and distress (41%) were cited as the most frequent reasons for which PPC teams consult ethics. PPC respondents identified role clarity, coordinated engagement, timely presence, and open communication as strong PHCE consultant practices. Conclusions: PPC team members performing ethics consults may benefit from additional ethics education and training. Further research is warranted to delineate scope of ethics consultancy relevant to PPC and role clarity.

2.
J Pediatr Intensive Care ; 13(2): 192-200, 2024 Jun.
Article de Anglais | MEDLINE | ID: mdl-38919695

RÉSUMÉ

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.

3.
Semin Neurol ; 2024 Jun 24.
Article de Anglais | MEDLINE | ID: mdl-38914125

RÉSUMÉ

Neurologic illnesses can be challenging to diagnose, involve changes in consciousness, and are often complicated by prognostic uncertainty. These disorders can affect how individuals interact with their environment, and as a result, many ethical concerns may arise related to their medical care. Key ethical issues in neuropalliative care include shared decision-making, evolving autonomy and capacity, best interest and harm principles, beneficence and nonmaleficence, futile and inappropriate care, justice and equity, and ableism. The four core principles of medical ethics, beneficence, nonmaleficence, justice, and autonomy, are foundational in considering approaches to these ethical challenges. Shared decision-making is rooted in the principle of autonomy. Evolving autonomy and capacity evoke autonomy, beneficence, and nonmaleficence. The best interest and harm principles are rooted in beneficence and nonmaleficence. Questions of futility and inappropriate care are founded in the principles of nonmaleficence, autonomy, and justice. Ableism invokes questions of nonmaleficence, autonomy, and justice. Practitioners of neurology will encounter ethical challenges in their practice. Framing decisions around the core ethical principles of beneficence, nonmaleficence, autonomy, and justice will help clinicians navigate challenging situations while acknowledging and respecting each patient's individual story.

4.
Pediatr Cardiol ; 2024 May 03.
Article de Anglais | MEDLINE | ID: mdl-38700711

RÉSUMÉ

Parents of children in the pediatric cardiac intensive care unit (CICU) are often unprepared for family meetings (FM). Clinicians often do not follow best practices for communicating with families, adding to distress. An interprofessional team intervention for FM is feasible, acceptable, and positively impacts family preparation and conduct of FM in the CICU. We implemented a family- and team-support intervention for conducting FM and conducted a pretest-posttest study with parents of patients selected for a FM and clinicians. We measured feasibility, fidelity to intervention protocol, and parent acceptability via questionnaire and semi-structured interviews. Clinician behavior in meetings was assessed through semantic content analyses of meeting transcripts tracking elicitation of parental concerns, questions asked of parents, and responses to parental empathic opportunities. Logistic and ordinal logistic regression assessed intervention impact on clinician communication behaviors in meetings comparing pre- and post-intervention data. Sixty parents (95% of approached) were enrolled, with collection of 97% FM and 98% questionnaire data. We accomplished > 85% fidelity to intervention protocol. Most parents (80%) said the preparation worksheet had the right amount of information and felt positive about families receiving this worksheet. Clinicians were more likely to elicit parental concerns (adjusted odds ratio = 3.42; 95%CI [1.13, 11.0]) in post-intervention FM. There were no significant differences in remaining measures. Implementing an interprofessional team intervention to improve family preparation and conduct of FM is locally feasible, acceptable, and changes clinician behaviors. Future research should assess broader impact of training on clinicians, patients, and families.

5.
J Prim Care Community Health ; 15: 21501319241249400, 2024.
Article de Anglais | MEDLINE | ID: mdl-38695452

RÉSUMÉ

OBJECTIVE: The purpose of this study was to implement a 2-phase approach to rapidly increase the number of annual wellness visits (AWVs) and build a sustainable model at 3 study units (Mayo Clinic in Rochester, Minnesota, and clinics in 2 regions of Mayo Clinic Health System), which collectively serve approximately 80 000 patients who qualify for an AWV annually. METHODS: In the rapid improvement phase, beginning in July 2022, goals at the facilities were reoriented to prioritize AWVs, educate staff on existing AWV resources, and create low-effort workflows so that AWVs could be incorporated into existing patient appointments. Staff at all 3 study units worked independently and iterated quickly. In the second phase, all study units collaborated to design and implement a best-practice solution while they leveraged the engagement and lessons learned from the first phase and invested in additional system elements and change management to codify long-term success. RESULTS: The number of AWVs completed monthly increased in each study unit. In the rapid improvement phase, the number of AWVs increased but then plateaued (or decreased at some study units). In April 2023, the final scheduled outreach automation and visit tools were implemented, and the number of AWVs was sustained or increased, while outreach and scheduling times were decreased. The number of completed AWVs increased from 1148 across all study units in the first 6 months of 2022 to 14 061 during the first 6 months of 2023. CONCLUSIONS: The lessons learned from this project can be applied to other health systems that want to provide more patients with AWVs while improving operational efficiency. The keys are to have a clear vision of a successful outcome, engage all stakeholders, and iterate quickly to find what works best for the organization.


Sujet(s)
Promotion de la santé , Humains , Minnesota , Promotion de la santé/méthodes , Amélioration de la qualité , Soins de santé primaires/organisation et administration , Rendez-vous et plannings
6.
Pediatr Cardiol ; 45(5): 1064-1071, 2024 Jun.
Article de Anglais | MEDLINE | ID: mdl-38453700

RÉSUMÉ

Guidelines advocate for integrating palliative care into the management of heart failure (HF) and of children with life-limiting disease. The potential impact of palliative care integration into pediatric HF on patient-centered outcomes is poorly understood. The present study sought to assess the association of programmatic implementation of palliative care into the heart transplant evaluation process with hospital-free days (HFD) and end of life (EOL) treatment choices. The study included patients less than 19 years of age who underwent a heart transplant evaluation between February 2012 and April 2020 at a single center. Patients evaluated in the programmatic palliative care (PPC) era (January 2016-April 2020) were compared to patients evaluated in the pre-PPC era (February 2012-December 2015). The study included 188 patients, with 91 (48%) in the PPC era and 97 (52%) in the pre-PCC era. Children < 1 year of age at the time of the evaluation represented 32% of the cohort. 52% of patients had single ventricle physiology. PPC was not significantly associated with increased HFD (IRR 0.94 [95% CI 0.79-1.2]). PPC was however associated with intensity of EOL care with decreased mechanical ventilation (OR 0.12 [95% CI 0.02-0.789], p = 0.03) and decreased use of ionotropic support (OR 0.13 [95% CI 0.02-0.85], p =0.03). PPC in pediatric heart transplant evaluations may be associated with less invasive interventions at EOL.


Sujet(s)
Défaillance cardiaque , Transplantation cardiaque , Soins palliatifs , Orientation vers un spécialiste , Humains , Mâle , Femelle , Enfant d'âge préscolaire , Enfant , Nourrisson , Défaillance cardiaque/thérapie , Défaillance cardiaque/chirurgie , Adolescent , Études rétrospectives , Soins terminaux
7.
Cardiol Young ; 34(1): 113-119, 2024 Jan.
Article de Anglais | MEDLINE | ID: mdl-37226505

RÉSUMÉ

OBJECTIVE: The paediatric cardiac ICU presents unique challenges to optimal communication practices, which may impact participation in medical decision-making and long-term psychosocial outcomes for families. This study characterised parent perceptions of (1) team practices that impeded or facilitated communication and (2) preparation for family meetings with interprofessional care teams during extended cardiac ICU admissions. METHODS: A purposive sample of parents of children admitted to the cardiac ICU was selected to participate in interviews about their communication experiences. Data were analysed using a grounded theory approach. RESULTS: Twenty-three parents of 18 patients participated with an average length of stay of 55 days at the time of interview. Team practices that impeded communication included inaccurate/incomplete communication, inconsistent within team communication/coordination, and feeling overwhelmed by too many team members/questions. Team practices that facilitated communication included valuing parent preferences, provider continuity, explaining jargon, and eliciting questions. Preparation for family meetings included team practices, parental preferences, and experiences when learning about family meetings (including apprehension about meetings). Family meetings were described as valued opportunities to improve communication. CONCLUSION: Communication with medical teams represents a modifiable determinant of long-term outcomes for families of children in the cardiac ICU. When parents are included as valued members of their child's care team, they are more likely to feel a sense of control over their child's outcomes, even in the face of prognostic uncertainty. Family meetings represent an important opportunity to repair fractures in trust between families and care teams and overcome barriers to communication between parties.


Sujet(s)
Unités de soins intensifs pédiatriques , Parents , Enfant , Humains , Communication , Recherche qualitative , Équipe soignante
8.
Cardiol Young ; 34(2): 282-290, 2024 Feb.
Article de Anglais | MEDLINE | ID: mdl-37357911

RÉSUMÉ

INTRODUCTION: Understanding parents' communication preferences and how parental and child characteristics impact satisfaction with communication is vital to mitigate communication challenges in the cardiac ICU. METHODS: This cross-sectional survey was conducted from January 2019 to March 2020 in a paediatric cardiac ICU with parents of patients admitted for at least two weeks. Family satisfaction with communication with the medical team was measured using the Communication Assessment Tool for Team settings. Clinical characteristics were collected via Epic, Pediatric Cardiac Critical Care Consortium local entry and Society for Thoracic Surgeons Congenital Heart Surgery Databases. Associations between communication score and parental mood, stress, perceptions of clinical care, and demographic characteristics along with patient demographic and clinical characteristics were examined. Multivariable ordinal models were conducted with characteristics significant in bivariate analysis. RESULTS: In total, 93 parents of 84 patients (86% of approached) completed surveys. Parents were 63% female and 70% White. Seventy per cent of patients were <6 months old at admission, 25% had an extracardiac abnormality, and 80% had a cardiac surgery this admission. Parents of children with higher pre-surgical risk of mortality scores (OR 2.875; 95%CI 1.076-7.678), presence of surgical complications (72 [63.0, 75.0] vs. 64 [95%CI 54.6, 73] (p = 0.0247)), and greater satisfaction with care in the ICU (r = 0.93922; p < 0.0001) had significantly higher communication scores. CONCLUSION: These findings can prepare providers for scenarios with higher risk for communication challenges and demonstrate the need for further investigation into interventions that reduce parental anxiety and improve communication for patients with unexpected clinical trajectories.


Sujet(s)
Unités de soins intensifs pédiatriques , Satisfaction personnelle , Enfant , Humains , Femelle , Nourrisson , Mâle , Études transversales , Communication , Parents
9.
Hosp Pediatr ; 13(9): e246-e250, 2023 09 01.
Article de Anglais | MEDLINE | ID: mdl-37641886

RÉSUMÉ

OBJECTIVES: In 2019, the American Academy of Pediatrics (AAP) outlined 8 operational recommendations for pediatric institutional ethics committees (IECs). The study purpose was to quantify the extent to which pediatric IECs adhere to the AAP IEC Policy Statement recommendations. METHODS: A convenience sample of ethics points of contact from Children's Hospital Association membership were invited to complete an electronic survey on their ethics programs and practices in spring 2022. Nineteen survey questions were preidentified as reflecting measures specific to best practice standards previously published by the AAP. This subset of questions was analyzed using frequencies and categorized to assess for adherence to the AAP IEC policy recommendations. RESULTS: A total of 117 out of 181 surveys were completed (65%). Stark IEC practice gaps include: lack of diversity of membership, training needs to maintain members' competencies, quality improvement within the organization, and scope of ethics service. Over one-quarter of IECs do not have a systematic way of informing hospital staff about ethics consultancy services and how to place an ethics consult. Nineteen percent of responding IEC services do not inform patients or families about the existence of ethics consult services. One-third of responding children's hospitals do not provide resources for the IECs to engage in ethics education at the facility. CONCLUSIONS: IECs in children's hospitals are not consistently abiding by operational recommendations. Next steps should include assessment of recommendation barriers and enablers with a goal of enhancing strong practices across IECs in children's hospitals.


Sujet(s)
Comités d'éthique , Hôpitaux pédiatriques , Humains , Enfant , Niveau d'instruction , Personnel hospitalier , Politique (principe)
10.
Circ Cardiovasc Qual Outcomes ; 16(2): e000114, 2023 02.
Article de Anglais | MEDLINE | ID: mdl-36633003

RÉSUMÉ

AIM: This summary from the American Heart Association provides guidance for the provision of primary and subspecialty palliative care in pediatric congenital and acquired heart disease. METHODS: A comprehensive literature search was conducted from January 2010 to December 2021. Seminal articles published before January 2010 were also included in the review. Human subject studies and systematic reviews published in English in PubMed, ClinicalTrials.gov, and the Cochrane Collaboration were included. Structure: Although survival for pediatric congenital and acquired heart disease has tremendously improved in recent decades, morbidity and mortality risks remain for a subset of young people with heart disease, necessitating a role for palliative care. This scientific statement provides an evidence-based approach to the provision of primary and specialty palliative care for children with heart disease. Primary and specialty palliative care specific to pediatric heart disease is defined, and triggers for palliative care are outlined. Palliative care training in pediatric cardiology; diversity, equity, and inclusion considerations; and future research directions are discussed.


Sujet(s)
Cardiologie , Cardiopathies , États-Unis , Enfant , Humains , Adolescent , Soins palliatifs , Longévité , Association américaine du coeur
11.
Pediatrics ; 151(3)2023 03 01.
Article de Anglais | MEDLINE | ID: mdl-36720707

RÉSUMÉ

BACKGROUND AND OBJECTIVE: Although guidelines call for the presence of pediatric ethics consultation services (PECS), their existence in children's hospitals remains unquantified. This study determined the prevalence of PECS in children's hospitals and compared the practice environments of those with versus without PECS. METHOD: The Children's Hospital Association Annual Benchmark Report survey from 2020 and PECS data were analyzed for the association of PECS with domains of care. RESULTS: Two hundred thirty-one hospitals received survey requests, with 148 submitted and 144 reachable to determine PECS (62% response rate), inclusive of 50 states. Ninety-nine (69%) reported having ethics consultation services. Freestanding children's hospitals (28% of all hospitals) were more likely to report the presence of PECS (P <.001), making up 41% of hospitals with a PECS. The median number of staffed beds was 203 (25th quartile 119, 75th quartile 326) for those with PECS compared with 80 for those without (25th quartile 40, 75th quartile 121). Facilities with palliative care, higher trauma ratio, intensive care, and comprehensive programs were more likely to have PECS. Academic affiliation was associated with PECS presence (P <.001). Settings associated with skilled nursing facilities or long-term care programs were not more likely to have PECS. Hospitals designated as federally qualified health centers (P = .04) and accountable care organizations (P = .001) were more likely to have PECS. CONCLUSION: Although PECS function as formal means to clarify values and mitigate conflict, one-third of children's hospitals lack PECS. Future research is needed to understand barriers to PECS and improve its presence.


Sujet(s)
Consultation d'éthique , Enfant , Humains , Enquêtes et questionnaires , Hôpitaux pédiatriques , Soins palliatifs , Soins de réanimation
12.
Pediatrics ; 151(3)2023 03 01.
Article de Anglais | MEDLINE | ID: mdl-36720710

RÉSUMÉ

BACKGROUND AND OBJECTIVES: National standards and guidelines call for a mechanism to address ethical concerns and conflicts in children's hospitals. The roles, responsibilities, and reach of pediatric ethics consultation services (PECS) remain unmeasured. The purpose of this study is to quantify staffing, structure, function, scope, training, and funding of PECS. METHODS: Cross-sectional online survey was shared with an ethics informant at 181 children's hospitals in the United States from March to June 2022. Data were summarized descriptively and with semantic content analyses. RESULTS: One hundred seventeen surveys were received from individual children's hospitals in 45 states and Washington DC (response rate 65%), with 104 qualifying for survey completion. Almost one-quarter of settings received 50 or more pediatric ethics consults in the past 12 months. On average, 7.4 people at each institution have responsibility for completing ethics consults. Estimated full-time equivalent salary support for ethics is on average 0.5 (range 0-3, median 0.25). One-third (33%) of facilities do not offer any salary support for ethics and three-quarters do not have an institutional budget for the ethics program. Clinical staff primarily initiate consults. End-of-life, benefits versus burdens of treatments, and staff moral distress were the most frequently consulted themes. Almost one-quarter (21%) of children's hospitals do not receive any consults from patients or families. CONLUSIONS: The findings from this study reveal wide variation in PECS practices and raise concern about the lack of financial support provided for PECS despite substantial workloads.


Sujet(s)
Consultation d'éthique , Enfant , Humains , États-Unis , Études transversales , Enquêtes et questionnaires , Hôpitaux pédiatriques , Effectif
13.
AJOB Empir Bioeth ; 14(3): 135-142, 2023.
Article de Anglais | MEDLINE | ID: mdl-36574230

RÉSUMÉ

BACKGROUND: Despite national increase in pediatric ethics consultation volume over the past decade, protected time and resources for healthcare ethics consultancy work has lagged. METHODS: Correlation study investigating potential associations between ethics consult volume reported by recent national survey of consultants at children's hospitals and five programmatic domains. RESULTS: 104 children's hospitals in 45 states plus Washington DC were included. There was not a statistically significant association between pediatric ethics consult volume and hospital size, rurality of patient population, or number of consultants. Academically-affiliated children's hospitals had fewer ethics consults compared to nonacademically affiliated. Association was found between full-time equivalent (FTE) hours and number of ethics consults (p < 0.0001). Spearman rank correlation between ethics consult volume and FTE was 0.5. CONCLUSIONS: While the results of this study should be interpreted with caution, investment in protected time for ethics consultancy work may translate into increased volume of pediatric ethics consults.


Sujet(s)
Bioéthique , Consultation d'éthique , Enfant , Humains , Hôpitaux pédiatriques , Consultants
14.
J Pediatr ; 252: 48-55.e1, 2023 01.
Article de Anglais | MEDLINE | ID: mdl-35973447

RÉSUMÉ

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.


Sujet(s)
Communication , Unités de soins intensifs pédiatriques , Humains , Enfant , Parents , Qualité des soins de santé , Personnel de santé
15.
Pediatr Crit Care Med ; 24(10): 849-861, 2023 Oct 01.
Article de Anglais | MEDLINE | ID: mdl-38415714

RÉSUMÉ

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.


Sujet(s)
Référenciation , Cognition , Enfant , Humains , Consensus , Parents , Unités de soins intensifs pédiatriques
16.
Hosp Pediatr ; 12(9): e291-e294, 2022 09 01.
Article de Anglais | MEDLINE | ID: mdl-35934755

RÉSUMÉ

BACKGROUND: Ethics consultation services (ECS) support clinical decision-making when there are values conflicts. Accessibility to ECS by patients and families is required to benefit from the service. Multiple national guidelines encourage ready availability of ECS to all stakeholders including patients and families. METHODS: All facilities registered with the Children's Hospital Association (n = 190) were contacted using a protocol modeled after an adult ethics consultation practice study. After an online search to identify an ethics contact, calls were made to hospital operators, and each transfer was documented as well as time to ECS contact. If no contact was identified on progression through the call protocol or on completion of the call pathway on 3 occasions each spaced by 1 week, the ECS was labeled "unreached." RESULTS: Only 36 (19%) ECS contacts were identified via online search with the remainder 154 (81%) requiring phone calls. Fewer than one-quarter of operators (n = 34/154, 22%) could identify a contact name or number for ECS. Thirty ECS (16%) remained unreachable after completion of the call pathway or 3 separate attempts. Successful ECS contact required an average of 2.9 attempts. Maximum call hold duration was 25 minutes. Callback times averaged 5.8 business days after voicemail. CONCLUSIONS: This study revealed limited reachability of ECS. ECS should make their contact information available online and improve information available to operators.


Sujet(s)
Consultation d'éthique , Adulte , Aidants , Enfant , Hôpitaux pédiatriques , Humains , Patients hospitalisés
17.
J Pain Symptom Manage ; 64(1): 8-16, 2022 07.
Article de Anglais | MEDLINE | ID: mdl-35339610

RÉSUMÉ

CONTEXT: Family meetings are encouraged in the pediatric cardiac intensive care unit (CICU) with the expectation of supporting parental shared decision-making (SDM). However, they often fall short of this goal. Additionally, interprofessional team and family meetings are dominated by input from physicians, under-utilizing the skillset of the full clinical team. OBJECTIVES: 1) To determine feasibility of a codesign process to optimize the preparation of the interprofessional team and parents for conducting SDM-oriented family meetings in the CICU, and 2) to describe the resulting elements of the intervention including new support documents for the team and family to prepare for the meeting, team member roles in the meeting, and optimization of communication skills. METHODS: Experience-based codesign was used with CICU clinicians and parents of children hospitalized in the CICU to develop an intervention at a single institution. Sessions were audio recorded and transcribed and analyzed using modified grounded theory. Participants were surveyed about their engagement in the codesign process to assess feasibility. RESULTS: Fifteen professionals and six parents enrolled in the codesign and endorsed engagement in the process and importance of the intervention elements. Participants identified the benefit of complementary parent and team preparation for family meetings noting five distinct types of meetings that occurred frequently. Documents, processes, and skills training were developed to improve interprofessional teamwork regarding shared decision making and support of parents in family meetings. CONCLUSION: A codesign of an intervention with clinicians and parents in the CICU is a feasible and resulted in an intervention with broad support among clinicians in the CICU.


Sujet(s)
Unités de soins intensifs pédiatriques , Médecins , Enfant , Humains , Parents
18.
J Palliat Med ; 25(4): 656-661, 2022 04.
Article de Anglais | MEDLINE | ID: mdl-34807737

RÉSUMÉ

Palliative care (PC) subspecialists and clinical ethics consultants often engage in parallel work, as both function primarily as interprofessional consultancy services called upon in complex clinical scenarios and challenging circumstances. Both practices utilize active listening, goals-based communication, conflict mediation or mitigation, and values explorations as care modalities. In this set of tips created by an interprofessional team of ethicists, intensivists, a surgeon, an attorney, and pediatric and adult PC nurses and physicians, we aim to describe some paradigmatic clinical challenges for which partnership may improve collaborative, comprehensive care.


Sujet(s)
Soins infirmiers en centre de soins palliatifs , Soins palliatifs , Adulte , Enfant , Communication , Éthiciens , Éthique clinique , Humains
19.
J Med Philos ; 46(6): 704-728, 2021 Dec 02.
Article de Anglais | MEDLINE | ID: mdl-34865061

RÉSUMÉ

The so-called Disability Paradox arises from the apparent tension between the popular view that disability leads to low well-being and the relatively high life-satisfaction reports of disabled people. Our aim in this essay is to make some progress toward dissolving this alleged paradox by exploring the relationship between disability and various "goods of life"-that is, components of a life that typically make a person's life go better for them. We focus on four widely recognized goods of life (happiness, rewarding relationships, knowledge, achievement) and four common types of disability (sensory, mobility, intellectual, and social) and systematically examine the extent to which the four disability types are in principle compatible with obtaining the four goods of life. Our findings suggest that there is a high degree of compatibility. This undermines the widespread view that disabilities, by their very nature, substantially limit a person's ability to access the goods of life, and it provides some guidance on how to dissolve the Disability Paradox.

20.
J Immunol ; 207(2): 376-379, 2021 07 15.
Article de Anglais | MEDLINE | ID: mdl-34193597

RÉSUMÉ

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is responsible for the COVID-19 pandemic. Neutralizing Abs target the receptor binding domain of the spike (S) protein, a focus of successful vaccine efforts. Concerns have arisen that S-specific vaccine immunity may fail to neutralize emerging variants. We show that vaccination with a human adenovirus type 5 vector expressing the SARS-CoV-2 nucleocapsid (N) protein can establish protective immunity, defined by reduced weight loss and viral load, in both Syrian hamsters and K18-hACE2 mice. Challenge of vaccinated mice was associated with rapid N-specific T cell recall responses in the respiratory mucosa. This study supports the rationale for including additional viral Ags in SARS-CoV-2 vaccines, even if they are not a target of neutralizing Abs, to broaden epitope coverage and immune effector mechanisms.


Sujet(s)
Anticorps antiviraux/immunologie , Lymphocytes T CD8+/immunologie , Vaccins contre la COVID-19/immunologie , COVID-19/prévention et contrôle , Protéines de la nucléocapside des coronavirus/immunologie , SARS-CoV-2/immunologie , Animaux , Anticorps neutralisants/immunologie , COVID-19/immunologie , Lignée cellulaire , Chlorocebus aethiops , Cricetinae , Femelle , Mémoire immunologique/immunologie , Numération des lymphocytes , Mâle , Souris , Souris de lignée C57BL , Phosphoprotéines/immunologie , Vaccination , Cellules Vero
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