Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 248
Filtrar
Mais filtros

Base de dados
Tipo de documento
Intervalo de ano de publicação
1.
J Med Internet Res ; 26: e50182, 2024 Jun 18.
Artigo em Inglês | MEDLINE | ID: mdl-38888947

RESUMO

Families of individuals with neurodevelopmental disabilities or differences (NDDs) often struggle to find reliable health information on the web. NDDs encompass various conditions affecting up to 14% of children in high-income countries, and most individuals present with complex phenotypes and related conditions. It is challenging for their families to develop literacy solely by searching information on the internet. While in-person coaching can enhance care, it is only available to a minority of those with NDDs. Chatbots, or computer programs that simulate conversation, have emerged in the commercial sector as useful tools for answering questions, but their use in health care remains limited. To address this challenge, the researchers developed a chatbot named CAMI (Coaching Assistant for Medical/Health Information) that can provide information about trusted resources covering core knowledge and services relevant to families of individuals with NDDs. The chatbot was developed, in collaboration with individuals with lived experience, to provide information about trusted resources covering core knowledge and services that may be of interest. The developers used the Django framework (Django Software Foundation) for the development and used a knowledge graph to depict the key entities in NDDs and their relationships to allow the chatbot to suggest web resources that may be related to the user queries. To identify NDD domain-specific entities from user input, a combination of standard sources (the Unified Medical Language System) and other entities were used which were identified by health professionals as well as collaborators. Although most entities were identified in the text, some were not captured in the system and therefore went undetected. Nonetheless, the chatbot was able to provide resources addressing most user queries related to NDDs. The researchers found that enriching the vocabulary with synonyms and lay language terms for specific subdomains enhanced entity detection. By using a data set of numerous individuals with NDDs, the researchers developed a knowledge graph that established meaningful connections between entities, allowing the chatbot to present related symptoms, diagnoses, and resources. To the researchers' knowledge, CAMI is the first chatbot to provide resources related to NDDs. Our work highlighted the importance of engaging end users to supplement standard generic ontologies to named entities for language recognition. It also demonstrates that complex medical and health-related information can be integrated using knowledge graphs and leveraging existing large datasets. This has multiple implications: generalizability to other health domains as well as reducing the need for experts and optimizing their input while keeping health care professionals in the loop. The researchers' work also shows how health and computer science domains need to collaborate to achieve the granularity needed to make chatbots truly useful and impactful.


Assuntos
Internet , Transtornos do Neurodesenvolvimento , Humanos , Software
2.
J Occup Rehabil ; 2024 Feb 08.
Artigo em Inglês | MEDLINE | ID: mdl-38326702

RESUMO

PURPOSE: Inclusive recruitment and employment of autistic adults has garnered recent attention in research and policy. To address a need to better understand the experiences of autistic adults in relation to paid employment, we asked the literature, what are the experiences of autistic individuals (from their perspectives) in competitive employment? METHODS: A scoping review was conducted to summarize and consolidate the findings across research to date. A systematic search and screen of the literature resulted in 32 relevant studies. FINDINGS: Key study characteristics, participant demographics, and thematic findings are shared, along with considerations and recommendations for future research and practice. Six key themes were described by autistic participants across the 32 studies: (1) accessibility of employment, (2) workplace relationships and communication, (3) role alignment, (4) sensory needs and/or mental health, (5) colleagues' knowledge and beliefs about autism, and (6) family and community context. CONCLUSION: It is anticipated that the results of this review will be beneficial for stakeholders engaging in discussions and decision-making across research and employment contexts.

3.
J Psychosoc Oncol ; 42(2): 271-285, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-37589450

RESUMO

The purpose of this study is to identify links between caregiver hope, caregiver coping behaviors, and caregivers' coaching versus dismissing emotion socialization (ES) beliefs in a pediatric cancer sample.Self-report measures.Caregivers (N = 183, 80.20% mothers; 58.5% white; 32.2% Hispanic) of youth undergoing cancer treatment (51.10% hematological malignancy, 15.30% brain or spinal [CNS] tumor, and 25.14% non-CNS solid tumor) for at least six weeks.We used a series of mediation models to examine links between caregivers' coping behaviors, hope, and ES beliefs.Caregivers' hope significantly mediated a positive relation between caregivers' coping and their emotion coaching beliefs, as well as an inverse relation between caregivers' maladaptive coping and their emotion dismissing beliefs.Enhancing caregivers' hope or adaptive coping may support caregivers' beliefs during the pediatric cancer experience.Our findings support future research to evaluate whether enhancing caregivers' hope or adaptive coping may help support evidence-based interventions that target ES beliefs and behaviors.


Assuntos
Neoplasias , Socialização , Criança , Adolescente , Humanos , Cuidadores/psicologia , Adaptação Psicológica , Emoções , Neoplasias/terapia , Neoplasias/psicologia
4.
Immunity ; 41(6): 988-1000, 2014 Dec 18.
Artigo em Inglês | MEDLINE | ID: mdl-25500367

RESUMO

Group 3 innate lymphoid cells (ILC3s) are defined by the expression of the transcription factor RORγt, which is selectively required for their development. The lineage-specified progenitors of ILC3s and their site of development after birth remain undefined. Here we identified a population of human CD34(+) hematopoietic progenitor cells (HPCs) that express RORγt and share a distinct transcriptional signature with ILC3s. RORγt(+)CD34(+) HPCs were located in tonsils and intestinal lamina propria (LP) and selectively differentiated toward ILC3s. In contrast, RORγt(-)CD34(+) HPCs could differentiate to become either ILC3s or natural killer (NK) cells, with differentiation toward ILC3 lineage determined by stem cell factor (SCF) and aryl hydrocarbon receptor (AhR) signaling. Thus, we demonstrate that in humans RORγt(+)CD34(+) cells are lineage-specified progenitors of IL-22(+) ILC3s and propose that tonsils and intestinal LP, which are enriched both in committed precursors and mature ILC3s, might represent preferential sites of ILC3 lineage differentiation.


Assuntos
Células-Tronco Hematopoéticas/fisiologia , Linfócitos/fisiologia , Membro 3 do Grupo F da Subfamília 1 de Receptores Nucleares/metabolismo , Adulto , Antígenos CD34/metabolismo , Diferenciação Celular , Linhagem da Célula , Células Cultivadas , Humanos , Imunidade Inata , Interleucinas/metabolismo , Intestinos/imunologia , Células Matadoras Naturais/fisiologia , Análise em Microsséries , Membro 3 do Grupo F da Subfamília 1 de Receptores Nucleares/genética , Tonsila Palatina/imunologia , Transdução de Sinais , Interleucina 22
5.
J Pediatr Gastroenterol Nutr ; 76(2): 248-268, 2023 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-36705703

RESUMO

OBJECTIVES: To review the current literature and develop consensus conclusions and recommendations on nutrient intakes and nutritional practice in preterm infants with birthweight <1800 g. METHODS: The European Society of Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) Committee of Nutrition (CoN) led a process that included CoN members and invited experts. Invited experts with specific expertise were chosen to represent as broad a geographical spread as possible. A list of topics was developed, and individual leads were assigned to topics along with other members, who reviewed the current literature. A single face-to-face meeting was held in February 2020. Provisional conclusions and recommendations were developed between 2020 and 2021, and these were voted on electronically by all members of the working group between 2021 and 2022. Where >90% consensus was not achieved, online discussion meetings were held, along with further voting until agreement was reached. RESULTS: In general, there is a lack of strong evidence for most nutrients and topics. The summary paper is supported by additional supplementary digital content that provide a fuller explanation of the literature and relevant physiology: introduction and overview; human milk reference data; intakes of water, protein, energy, lipid, carbohydrate, electrolytes, minerals, trace elements, water soluble vitamins, and fat soluble vitamins; feeding mode including mineral enteral feeding, feed advancement, management of gastric residuals, gastric tube placement and bolus or continuous feeding; growth; breastmilk buccal colostrum, donor human milk, and risks of cytomegalovirus infection; hydrolyzed protein and osmolality; supplemental bionutrients; and use of breastmilk fortifier. CONCLUSIONS: We provide updated ESPGHAN CoN consensus-based conclusions and recommendations on nutrient intakes and nutritional management for preterm infants.


Assuntos
Gastroenterologia , Recém-Nascido Prematuro , Criança , Humanos , Lactente , Recém-Nascido , Nutrição Enteral , Leite Humano , Vitaminas , Água
6.
BMC Palliat Care ; 22(1): 162, 2023 Oct 27.
Artigo em Inglês | MEDLINE | ID: mdl-37891620

RESUMO

BACKGROUND: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. METHODS: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. RESULTS: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. CONCLUSION: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.


Assuntos
Luto , COVID-19 , Feminino , Criança , Humanos , Cuidados Paliativos , Pandemias , Apoio Familiar , Saúde Pública , Pais , Morte
7.
J Intellect Disabil ; 27(4): 871-884, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-35652791

RESUMO

The COVID-19 pandemic has imposed unprecedented service interruptions in many sectors including services for children and youth with neuro-developmental disabilities (NDD). We examined the experiences of service providers as they supported this population during the pandemic. Five focus groups were convened with 24 service providers offering support to children/youth with NDD and their families. Results highlight substantial service changes and challenges, as observed by service providers. Service closures and program delivery modification resulted in the rapid adoption of virtual services and reduced program delivery. Service providers have faced heightened workloads, personal weariness and 'burn out', and new levels of conflict at work, yet with little opportunity and support for self-care. Beyond challenges, new learning and growth have emerged, with heightened collaboration amongst organizations. Strains in service delivery during the pandemic have exposed programming and systems gaps, for which proactive capacity building is warranted and recommended.


Assuntos
COVID-19 , Deficiência Intelectual , Humanos , Criança , Adolescente , Grupos Focais , Pandemias , Deficiências do Desenvolvimento/terapia
8.
J Gerontol Soc Work ; 66(5): 629-641, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-36285417

RESUMO

The COVID-19 pandemic ushered in multiple public health protocols that shaped the service delivery system supporting older adults, their family caregivers and their formal care providers. In this qualitative study, sixteen social workers employed in long term care facilities in a western province of Canada shared their perspectives about the impacts of the COVID-19 pandemic on their practice early in the pandemic. Participants responded to nine open-ended online survey questions about their practice and experiences. Four themes were identified: (1) a changing and demanding work environment, (2) witnessing transitions in residents' quality of life, (3) impacts on relationships and work climate, and (4) personal impacts on social workers. Recommendations for enhancing capacity in the system were identified. Implications of findings illuminate a need for proactive preparedness approaches in order for social workers to address emergent and changing needs of residents and their families during a pandemic.


Assuntos
COVID-19 , Assistência de Longa Duração , Humanos , Idoso , COVID-19/epidemiologia , Pandemias , Qualidade de Vida , Assistentes Sociais
9.
J Pediatr ; 241: 36-41.e2, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34619115

RESUMO

OBJECTIVE: To evaluate the impact of a novel nurse-led transition intervention program designed for young adolescents (age 13-14 years) with congenital heart disease (CHD). We hypothesized that the intervention would result in improved self-management skills and CHD knowledge. STUDY DESIGN: Single-center cluster randomized controlled trial of a nurse-led transition intervention vs usual care. The intervention group received a 1-hour individualized session with a cardiology nurse, focusing on CHD education and self-management. The primary end point was change in TRANSITION-Q (transition readiness) score between baseline and 6 months. The secondary end point was change in MyHeart score (CHD knowledge). RESULTS: We randomized 60 participants to intervention (n = 30) or usual care (n = 30). TRANSITION-Q score (range 0-100) increased from 49 ± 10 at baseline to 54 ± 9.0 at 6 months (intervention) vs 47 ± 14 to 44 ± 14 (usual care). Adjusted for baseline score, TRANSITION-Q scores at 1 and 6 months were greater in the intervention group (mean difference 5.9, 95% CI 1.3-10.5, P = .01). MyHeart score (range 0-100) increased from 48 ± 24 at baseline to 71 ± 16 at 6 months (intervention) vs 54 ± 24 to 57 ± 22 (usual care). Adjusted for baseline score, MyHeart scores at 1 and 6 months were greater in the intervention group (mean difference 19, 95% CI 12-26, P < .0001). Participants aged 14 years had a greater increase in TRANSITION-Q score at 6 months compared with 13-year-old participants (P < .05). CONCLUSIONS: A nurse-led program improved transition readiness and CHD knowledge among young adolescents. This simple intervention can be readily adopted in other healthcare settings. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02374892.


Assuntos
Cardiopatias Congênitas , Transição para Assistência do Adulto/organização & administração , Adolescente , Feminino , Humanos , Masculino , Educação de Pacientes como Assunto , Autogestão
10.
MMWR Morb Mortal Wkly Rep ; 71(21): 709-712, 2022 May 27.
Artigo em Inglês | MEDLINE | ID: mdl-35617142

RESUMO

Listeriosis is a serious infection usually caused by eating food contaminated with the bacterium Listeria monocytogenes. An estimated 1,600 persons become ill with listeriosis each year, among whom approximately 260 die. Persons at higher risk for listeriosis include pregnant persons and their newborns, adults aged ≥65 years, and persons with weakened immune systems. Persons with invasive listeriosis usually report symptoms starting 1-4 weeks after eating food contaminated with L. monocytogenes; however, some persons who become infected have reported symptoms starting as late as 70 days after exposure or as early as the same day of exposure (1). On January 29, 2021, PulseNet, the national molecular subtyping surveillance network coordinated by CDC, identified a multistate cluster of three L. monocytogenes infections: two from Maryland and one from Connecticut (2). CDC, the Food and Drug Administration (FDA), and state and local partners began an investigation on February 1, 2021. A total of 13 outbreak-related cases were eventually identified from four states. All patients reported Hispanic ethnicity; 12 patients were hospitalized, and one died. Rapid food testing and record collection by regulatory agencies enabled investigators to identify a brand of queso fresco made with pasteurized milk as the likely source of the outbreak, leading to an initial product recall on February 19, 2021. Fresh, soft Hispanic-style cheeses made with pasteurized milk are a well-documented source of listeriosis outbreaks. These cheeses can be contaminated with L. monocytogenes unless stringent hygienic controls are implemented, and the processing environment is monitored for contamination (3). U.S. public health agencies should establish or improve communications, including new methods of disseminating information that also effectively reach Hispanic populations, to emphasize the risk from eating fresh, soft Hispanic-style cheeses, even those made with pasteurized milk.


Assuntos
Queijo , Listeria monocytogenes , Listeriose , Adulto , Queijo/microbiologia , Surtos de Doenças , Feminino , Contaminação de Alimentos , Microbiologia de Alimentos , Hispânico ou Latino , Humanos , Recém-Nascido , Listeriose/epidemiologia , Gravidez , Estados Unidos/epidemiologia
11.
Pediatr Transplant ; 26(8): e14388, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36101008

RESUMO

BACKGROUND: The COVID-19 pandemic has had deleterious impacts on pediatric patients and families, as well as the healthcare providers who have attended to their care needs. METHODS: In this qualitative study, children with a cardiac transplant, as well as their families and healthcare providers were interviewed to explore the impact of the COVID-19 pandemic on pediatric care, as well as on patients' and their families' daily lives. Participants were recruited from a children's hospital in western Canada. Fifteen caregiving parents of transplanted children, 2 young patients, and 8 healthcare providers participated in interviews. RESULTS: Findings highlighted how families and their healthcare providers experienced pandemic-related shifts. Themes highlighted experiences, which entailed (1) initially hearing about the COVID-19 pandemic; (2) learning about their new reality; (3) adjusting to the pandemic; (4) adjusting to shifts in pediatric services; (5) evolving a view on the future, and (6) offering recommendations for cardiac care in a pandemic. CONCLUSIONS: Study implications emphasize the need to critically reflect on, and advance, methods of helping young patients and their families in pandemic circumstances, and supporting healthcare providers.


Assuntos
COVID-19 , Transplante de Coração , Humanos , Criança , Pandemias , Pessoal de Saúde , Pais , Pesquisa Qualitativa
12.
Psychol Health Med ; 27(7): 1431-1442, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-33559487

RESUMO

The psychological and social impact of hair loss and its ongoing treatment can be considerable. Medical treatments are not always successful, and alternative treatments, such as medical tattooing, are growing in popularity. The aims of this study were to explore adults' motivations, experiences, and self-perceived outcomes in relation to medical tattooing. Individual telephone interviews were conducted with 22 women from the United Kingdom aged 26-67 years who had undergone medical tattooing in the past 5 years related to hair loss. Interviews were transcribed and inductive thematic analysis was performed. Appearance concerns, loss of self-confidence/identity, and the practicalities of daily upkeep were cited as reasons for seeking a semi-permanent solution. Trust in the practitioner and the ongoing costs of tattoo maintenance were important considerations in participants' decision-making process and their overall satisfaction with treatment outcomes. Participants felt the emotional impact of hair loss and the subsequent need for appearance-restoring treatment remains unrecognised. This study provides insight into participants' perceptions of an under-researched and unregulated but widely accessible treatment. Implications for the decision-making process are discussed, and suggestions for health professionals are offered.


Assuntos
Tatuagem , Adulto , Alopecia/terapia , Tomada de Decisões , Emoções , Feminino , Humanos , Pesquisa Qualitativa
13.
New Media Soc ; 25(7)2022 Apr 05.
Artigo em Inglês | MEDLINE | ID: mdl-37441356

RESUMO

Video game content has evolved over the last six decades, from a basic focus on challenge and competition to include more serious and introspective narratives capable of encouraging critical contemplation within gamers. The "No Russian" mission from Call of Duty: Modern Warfare 2 casts players as terrorists responsible for the murder of innocent bystanders, sparking debate around how players engage and react to wanton violence in modern video games. Through thematic analysis of 649 Reddit posts discussing the mission, 10 themes emerged representing complexity in player experiences. Those themes were grouped into categories representing (descending order), (1) rote gameplay experiences, (2) dark humor, (3) comparing the mission to other games and real-world events, and (4) self-reflective eudaimonic reactions to the mission. Although less common, the presence of eudaimonic media effects (in at least 15% of posts) holds promise for the use of video games as reflective spaces for violence prevention.

14.
Paediatr Child Health ; 27(Suppl 1): S33-S39, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-35620553

RESUMO

Objectives: The COVID-19 pandemic has impacted mental health at a population level. Families of children with health vulnerabilities have been disproportionately affected by pandemic-related policies and service disruptions as they substantially rely on the health and social care system. We elicited the impact of the COVID-19 pandemic on children with health and disability-related vulnerabilities, their families, and their health care providers (HCPs). Methods: Children with diverse health vulnerabilities (cardiac transplantation, respiratory conditions, sickle cell disease, autism spectrum disorder, mental health issues, and nearing the end of life due to a range of underlying causes), as well as their parents and HCPs, participated in semi-structured interviews. Data were analyzed using qualitative content analysis in determining themes related to impact and recommendations for practice improvement. Results: A total of 262 participants (30 children, 76 parents, 156 HCPs) were interviewed. Children described loneliness and isolation; parents described feeling burnt out; and HCPs described strain and a sense of moral distress. Themes reflected mental health impacts on children, families, and HCPs, with insufficient resources to support mental health; organizational and policy influences that shaped service delivery; and recommendations to enhance service delivery. Conclusion: Children with health vulnerabilities, their families and HCPs incurred profound mental health impacts due to pandemic-imposed public health restrictions and care shifts. Recommendations include the development and application of targeted pandemic information and mental health supports. These findings amplify the need for capacity building, including proactive strategies and mitigative planning in the event of a future pandemic.

15.
Biochem Cell Biol ; 99(1): 1-6, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-32830532

RESUMO

Results from previous studies have suggested that supplemental bovine lactoferrin (BLF) given to preterm infants (<32 weeks gestation) reduces late-onset sepsis (LOS) and necrotising enterocolitis (NEC). The Enteral Lactoferrin in Neonates (ELFIN) study, performed in the UK, aimed to further address this issue with a well powered double-blind placebo controlled trial of >2200 preterm infants. The results from ELFIN did not demonstrate a reduction in LOS or NEC, or several other clinically important measures. Of the 1093 infants, 316 (29%) in the intervention group developed late-onset sepsis versus 334 (31%) of 1089 in the control group, with an adjusted risk ratio of 0.95 (95% CI = 0.86-1.04; p = 0.233). Reasons for the differences in ELFIN trial results and other studies may include population differences, the routine use of antifungal prophylaxis in the UK, timing of administration of the lactoferrin in relation to disease onset, or specific properties of the lactoferrin used in the different trials. The UK National Institutes for Health Research funded "Mechanisms Affecting the Guts of Preterm Infants in Enteral feeding trials" (MAGPIE) study is further exploring the use of lactoferrin, and the results should be available soon.


Assuntos
Enterocolite Necrosante/prevenção & controle , Lactoferrina/metabolismo , Sepse/prevenção & controle , Administração Oral , Método Duplo-Cego , Humanos , Lactente , Recém-Nascido , Recém-Nascido Prematuro , Lactoferrina/administração & dosagem , Reino Unido
16.
J Clin Microbiol ; 59(2)2021 01 21.
Artigo em Inglês | MEDLINE | ID: mdl-33177125

RESUMO

Clostridium perfringens is the second leading cause of bacterial foodborne illness in the United States. The Wadsworth Center (WC) at the New York State Department of Health enumerates infectious dose from primary patient and food samples and, until recently, identified C. perfringens to the species level only. We investigated whether whole-genome sequence-based subtyping could benefit epidemiological investigations of this pathogen, as it has with other enteric organisms. We retrospectively sequenced 76 patient and food samples received between May 2010 and February 2020, including 52 samples linked epidemiologically to 13 outbreaks and 24 sporadic samples not linked to other samples. Phylogenetic trees were built using two Web-based platforms: National Centers for Biotechnology Information Pathogen Detection (NCBI-PD) and GalaxyTrakr (a Galaxy instance supported by the GenomeTrakr initiative). For GalaxyTrakr analyses, single nucleotide polymorphism (SNP) matrices and maximum-likelihood (ML) trees were generated using 3 different reference genomes. Across the four separate analyses, phylogenetic clustering was generally concordant with epidemiologically identified outbreaks. SNP diversity among phylogenetically linked samples from an outbreak ranged from 0 to 20 SNPs, excepting one outbreak ranging from 4 to 62 SNPs. Importantly, four of the 13 outbreak isolates harbored one or more samples that were phylogenetic outliers, and for two outbreaks, no samples were closely related. Two specimens were found harboring two distinct genotypes. For samples below CDC enumeration dose threshold, phylogenetic clustering was robust and linked patient and/or food samples. We concluded that WGS phylogenetic clusters (i) are largely concordant with epidemiologically defined outbreaks, irrespective of analysis platform or reference genome we employed; (ii) have limited pairwise SNP diversity, allowing phylogenetic clusters to be distinguished from sporadic cases; and (iii) can aid in epidemiological investigations by identifying outlier and polyclonal samples.


Assuntos
Clostridium perfringens , Surtos de Doenças , Biotecnologia , Clostridium perfringens/genética , Genoma Bacteriano , Genômica , Humanos , Internet , New York , Filogenia , Polimorfismo de Nucleotídeo Único , Estudos Retrospectivos , Estados Unidos/epidemiologia
17.
Pediatr Transplant ; 25(7): e14072, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34245065

RESUMO

BACKGROUND: HRQOL is a key outcome following pediatric LT. Parent-proxy reports may substitute for patients unable to report their own HRQOL. This study compared parent-proxy and self-reported HRQOL in children who have undergone LT. METHODS: Pediatric LT recipients between the ages of 8 and 18 years, and a parent, completed self and proxy versions of the PeLTQL questionnaire, PedsQL Generic and Transplant modules, and standardized measures of depression and anxiety. RESULTS: Data from 129 parent-patient dyads were included. Median parent age was 44 years, and most (89%) were mothers. Median patient age was 2.5 years at LT and 13.6 years at the time of study participation. Parents had significantly lower scores than patients on PedsQL total generic (70.8 ± 18.5 and 74.3 ± 19.0, p = .01), PeLTQL coping and adjustment (63.0 ± 15.6 and 67.3 ± 16.2, p < .01), and social-emotional (66.3 ± 14.9 and 71.9 ± 15.6, p < .001) domains. Higher patient anxiety and depression were related to larger absolute differences between parent-proxy and self-reported scores on all HRQOL measures (all p < .05). In this disparity, parents reported higher HRQOL scores than their child as self-reported anxiety and depression scores increased. CONCLUSIONS: Differences in concordance between parent-proxy and self-reported HRQOL scores can be more prominent when children have more symptoms of anxiety and depression. Children's mental health symptoms should be queried, if feasible, when interpreting differences in parent and child reports of HRQOL.


Assuntos
Ansiedade/epidemiologia , Depressão/epidemiologia , Transplante de Fígado/psicologia , Pais/psicologia , Qualidade de Vida , Autorrelato , Adolescente , Criança , Feminino , Humanos , Masculino , Procurador
18.
J Pediatr Psychol ; 46(7): 844-855, 2021 08 11.
Artigo em Inglês | MEDLINE | ID: mdl-34015114

RESUMO

OBJECTIVE: This study examined the feasibility and initial outcome of a time-limited and intensive format of Parent-Child Interaction Therapy (PCIT) for families of young children who have sustained a traumatic brain injury (TBI). METHODS: The nonrandomized open trial included 15 families with a child aged 2-5 years who had sustained a TBI and displayed clinically elevated levels of externalizing behavior problems. Families received clinic-based PCIT twice per week over an average of 6 weeks, with the exception of two families that received the same intensity and format of PCIT in the home. RESULTS: Ten of the 14 families who completed the baseline assessment (71%) completed the intervention and post and follow-up assessments. On average, caregivers completed homework practice on 52% of the days in between sessions. Caregivers reported high acceptability and satisfaction following the intervention, as well as decreases in child externalizing and internalizing behavior problems at the post-assessment and 2-month follow-up. CONCLUSIONS: Results of this open trial provide preliminary support for the feasibility of a time-limited and intensive format of PCIT for families of young children who have sustained a TBI and have elevated levels of behavior problems. This study highlights a promising intervention approach for improving domains commonly affected by early childhood TBI and preventing the development of more severe and persistent problems.


Assuntos
Lesões Encefálicas Traumáticas , Comportamento Problema , Terapia Comportamental , Lesões Encefálicas Traumáticas/terapia , Pré-Escolar , Estudos de Viabilidade , Humanos , Relações Pais-Filho
19.
Foodborne Pathog Dis ; 18(11): 798-804, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34314625

RESUMO

Certain foods are more vulnerable to foodborne pathogen growth and formation of toxins than others. Lack of time and temperature control for these foods can result in the growth of pathogens, such as Listeria monocytogenes, and lead to foodborne outbreaks. The Food and Drug Administration's (FDA) Food Code classifies these foods as time/temperature control for safety (TCS) foods and details safe cooking, holding, and storing temperatures for these foods. The FDA Food Code also includes a date-marking provision for ready-to-eat TCS foods that are held for >24 h. The provision states that these foods should not be held in refrigeration for >7 days and should be marked with the date or day by which the food should be "consumed on the premises, sold, or discarded." To learn more about restaurants' date-marking practices, the Centers for Disease Control and Prevention's Environmental Health Specialists Network (EHS-Net) conducted observations and manager interviews in 359 restaurants in 8 EHS-Net jurisdictions. Managers reported that they date marked ready-to-eat TCS foods more often than data collectors observed this practice (91% vs. 77%). Observation data showed almost a quarter of study restaurants did not date-mark ready-to-eat TCS foods. In addition, restaurants with an internal date-marking policy date marked 1.25 times more often than restaurants without such a policy and chain restaurants date marked 5.02 times more often than independently owned restaurants. These findings suggest that regulators and the retail food industry may improve food safety and lower the burden of foodborne illness in the United States if they target interventions to independent restaurants and encourage strong date-marking policies.


Assuntos
Doenças Transmitidas por Alimentos , Restaurantes , Contaminação de Alimentos/análise , Manipulação de Alimentos , Microbiologia de Alimentos , Inocuidade dos Alimentos , Doenças Transmitidas por Alimentos/prevenção & controle , Humanos , Temperatura , Estados Unidos
20.
Paediatr Child Health ; 26(8): 462-469, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34987677

RESUMO

OBJECTIVES: Parents of children with medical complexity are often expected to implement complicated plans of care, such as enteral tube feeding, to support the health of their child. Enteral feeding can have psychosocial implications for the parent, child, and family. Blenderized tube feeding (BTF) refers to the administration of pureed food and drinks through a feeding tube. Little is known regarding parents' experiences with BTF. Therefore, the purpose of this qualitative study was to understand the lived experience of BTF from the parent's perspective. METHODS: This qualitative study was a grounded theory analysis utilizing semi-structured interviews of parents who provided at least 50% of their child's diet through BTF. Participants were recruited using purposive sampling from the Complex Care Program at a tertiary care paediatric centre. Interviews were conducted until thematic saturation was achieved. Themes were identified using constant comparative analysis of transcribed interviews. RESULTS: Parents (n=10) felt that BTF positively affected the experience of tube feeding and enhanced their child's health and wellbeing. Parents described BTF as a means of self-empowerment and a mechanism to normalize feeding and care for the entire family. Despite reporting BTF as more time consuming than formula feeding, all parents were satisfied with having made the change, and planned on continuing the diet. CONCLUSION: BTFs can improve the experience of tube feeding and positively address some of the negative psychosocial implications of enteral tube feeding, providing a sense of normalcy and control for parents caring for a child with medical complexity.

SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA