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1.
J Fam Psychol ; 38(4): 523-535, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38512214

RESUMO

COVID-19 public health measures caused significant disruptions to child and caregivers' mental and physical well-being, including quality of life (QoL). However, in samples outside the United States (U.S.), greater resilience has been linked to lower COVID-19 impact on child QoL. Thus, understanding individual and dyadic factors contributing to resilience and QoL during COVID-19 within the United States may provide important insight for points of intervention. This study aimed to characterize the interdependent effects of child and caregiver COVID-19 impact on child and caregiver resilience, as well as on child-reported and caregiver proxy-reported child QoL. U.S. caregivers (n = 231; 95.7% female) and their 8-17-year-old children (n = 231; 54.5% male; Mage = 11.87; SDage = 2.66) reported their COVID-19 impact between May and July 2020 (T1). Follow-up self-reports on resilience and child QoL occurred between November 2020 and January 2021 (T2). Two actor-partner interdependence models (APIM) and one actor-partner interdependence mediation model (APIMeM) assessed associations among caregiver and child COVID-19 impact, resilience, and QoL. An APIM revealed significant negative actor and partner effects of COVID-19 impact on child self-reported and caregiver proxy-reported child QoL. Another APIM revealed an actor effect from COVID-19 impact to one's own resilience. The APIMeM revealed two indirect effects revealing that when children or caregivers reported greater levels of T1 COVID-19 impact, it was associated with lower levels of T2 child-reported resilience, which was subsequently associated with lower T2 child-reported QoL. Findings suggested that both child and caregiver perceptions of the pandemic were important for their own and the others' resilience, as well as child QoL. (PsycInfo Database Record (c) 2024 APA, all rights reserved).


Assuntos
COVID-19 , Cuidadores , Qualidade de Vida , Resiliência Psicológica , Humanos , COVID-19/psicologia , Qualidade de Vida/psicologia , Masculino , Feminino , Criança , Adolescente , Cuidadores/psicologia , Adulto , Estados Unidos
2.
Pediatr Blood Cancer ; 71(4): e30903, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38321586

RESUMO

Opsoclonus-myoclonus-ataxia syndrome (OMAS) is an autoimmune central nervous system disorder, primarily manifesting as a paraneoplastic sequalae to neuroblastoma, and characterized by motor disorders and behavioral disturbances. OMAS is typified by aberrant B-cell and T-cell activation. Current treatment involves immunosuppression using corticosteroids, intravenous immunoglobulin, and rituximab. However, these approaches often lead to treatment-related toxicities and symptomatic recurrences with chronic neurocognitive impairment. We treated three children with refractory neuroblastoma-associated OMAS with tacrolimus, a T-cell-targeting calcineurin inhibitor, effectively controlling symptoms within a month and enabling the discontinuation of immunosuppression with minimal side effects. Tacrolimus shows promise as a therapeutic option for refractory OMAS.


Assuntos
Neuroblastoma , Transtornos da Motilidade Ocular , Síndrome de Opsoclonia-Mioclonia , Criança , Humanos , Tacrolimo/uso terapêutico , Transtornos da Motilidade Ocular/complicações , Síndrome de Opsoclonia-Mioclonia/tratamento farmacológico , Síndrome de Opsoclonia-Mioclonia/etiologia , Síndrome de Opsoclonia-Mioclonia/diagnóstico , Neuroblastoma/complicações , Neuroblastoma/tratamento farmacológico , Neuroblastoma/diagnóstico , Ataxia/complicações
3.
Palliat Support Care ; : 1-8, 2024 Feb 14.
Artigo em Inglês | MEDLINE | ID: mdl-38353006

RESUMO

OBJECTIVES: Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors associated with adolescents' involvement in care in the context of advanced disease. Thus, we examined the impact of background factors and decision-making perceptions on both adolescents' involvement in care and their desired change in involvement. METHODS: Adolescents with advanced cancer (<60% survival or refractory/relapsed disease), ages 10-23 (n = 41; Mage = 15.37), were recruited approximately 1 month after diagnosis to complete measures of decision-making perceptions and their family role. Hierarchical regressions examined the contributions of background factors and decision-making perceptions to adolescents' frequency and desired involvement in their care. Qualitative interviews regarding decision-making were analyzed using deductive analysis. RESULTS: The model examining frequency of involvement in care was significant, F(5,34) = 3.12, p = .02, R2= .31. Older age was the only significant predictor (ß = .13, p= .003). The model examining desired involvement was non-significant, F(5,34) = 2.22, p = .075. Qualitative analysis indicated that (1) older adolescents have more involvement in decision-making, (2) collaborative decision-making occurred between the adolescent and extended family, and (3) adolescents trusted others to make decisions. Integration of qualitative and quantitative data revealed congruence in findings. SIGNIFICANCE OF RESULTS: Adolescents with advanced cancer, who consider how decisions directly impact them and prefer greater autonomy, may be more involved in their medical care. Research is needed to identify other longitudinal predictors of decision-making and involvement in care. Providers should consider encouraging families to communicate their preferences and engage in shared decision-making.

4.
Palliat Support Care ; 22(2): 281-288, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37559193

RESUMO

OBJECTIVES: The COVID-19 pandemic posed new challenges to physical and psychological well-being. Families with pediatric cancer patients were particularly vulnerable due to changes like children staying at home, hospital policy shifts, and caring for an immunocompromised child. Limited research exists on COVID-19's effects on these families. This study aimed to assess the pandemic's impact and identify psychosocial support gaps. METHODS: Participants (N = 256) were parents of children with cancer recruited via Facebook in partnership with Momcology®, a community-based organization for pediatric cancer, between February and May 2021. Qualitative analyses used open-ended responses about the pandemic's impact on the family. RESULTS: Analysis revealed 6 themes, with positive and negative sentiments: family changes (n = 169; 61% negative), social isolation (n = 154; 100% negative), emotional impact (n = 143; 89% negative), school changes (n = 126; 80% negative), health-care changes (n = 111; 96% negative), and physical health (n = 49; 73% negative). Family changes overarched all themes and included financial strains, at-home schooling, and family bonding. Parents highlighted social isolation and the emotional impact of pandemic-related changes. School changes forced parents to balance remote-work and childcare. Health-care changes limited resources and visitation. Parents reported their children were less active and slept less but had fewer illnesses. SIGNIFICANCE OF RESULTS: Many common pandemic challenges were exacerbated by the stress of caring for a child with cancer. Parents struggled most with loss of social support and feelings of isolation. Careful consideration should be given to providing resources for parents of children with cancer and their families.


Assuntos
COVID-19 , Neoplasias , Criança , Humanos , Pandemias , Estresse Psicológico/psicologia , Apoio Social , Pais/psicologia , Neoplasias/complicações
5.
J Pediatr Hematol Oncol Nurs ; 41(2): 85-95, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38008953

RESUMO

Background/objectives: Little is known about the COVID-19 pandemic and its impact on the quality of life (QoL) of children with cancer who may be more vulnerable to the pandemic's effects. We examined associations between COVID-19 exposure and impact on parent-proxy reported QoL in children with cancer, and potential moderation based on the child's cancer status (i.e., time since diagnosis, on/off treatment). Design/method: Parents of children with cancer were recruited February-April 2021 via Facebook and Momcology. Parents completed the COVID-19 Exposure and Family Impact Scale and a child QoL measure. Controlling for parent age, income, child age, and child sex, we examined the indirect effect of COVID-19 impact on the association between COVID-19 exposure and parent-proxy reported child QoL, as well as the moderating role of cancer status. Results: Parents (N = 401) reported lower child QoL scores (M = 59.74) than prepandemic reports of children with cancer, t(735) = -6.98, p < .001. Mediation analyses revealed a significant indirect effect, 95% CI [-0.47, -0.13]: Higher COVID-19 exposure was associated with higher COVID-19 impact (a = 0.47, p < .001), which was related to lower QoL (b = -0.56, p < .001). The association between impact and QoL was stronger as time since diagnosis increased (95%CI [-0.08, -0.001]), yet treatment status did not moderate this path. Conclusions: Parents who report greater COVID-19 impact may also report lower QoL in their children with cancer, especially further from diagnosis. Nurses and clinicians should be aware of the pandemic's negative impact and screen for COVID-19 related distress. Additionally, results highlight the importance of long-term, family-centered care, regardless of whether children receive treatment or survivorship care.


Assuntos
COVID-19 , Neoplasias , Criança , Humanos , Qualidade de Vida , Pandemias , COVID-19/epidemiologia , Pais , Neoplasias/epidemiologia
7.
PLoS One ; 18(8): e0289987, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37590237

RESUMO

Medication non-adherence rates in children range between 50% and 80% in the United States. Due to multifaceted outpatient routines, children receiving hematopoietic stem cell transplant (HCT) are at especially high risk of non-adherence, which can be life-threatening. Although digital health interventions have been effective in improving non-adherence in many pediatric conditions, limited research has examined their benefits among families of children receiving HCT. To address this gap, we created the BMT4me© mobile health app, an innovative intervention serving as a "virtual assistant" to send medication-taking reminders for caregivers and to track, in real-time, the child's medication taking, barriers to missed doses, symptoms or side effects, and other notes regarding their child's treatment. In this randomized controlled trial, caregivers will be randomized to either the control (standard of care) group or the intervention (BMT4me© app) group at initial discharge post-HCT. Both groups will receive an electronic adherence monitoring device (i.e., medication event monitoring system "MEMS" cap, Medy Remote Patient Management "MedyRPM" medication adherence box) to store their child's immunosuppressant medication. Caregivers who agree to participate will be asked to complete enrollment, weekly, and monthly parent-proxy measures of their child's medication adherence until the child reaches Day 100 or complete taper from immunosuppression. Caregivers will also participate in a 15 to 30-minute exit interview at the conclusion of the study. Descriptive statistics and correlations will be used to assess phone activity and use behavior over time. Independent samples t-tests will examine the efficacy of the intervention to improve adherence monitoring and reduce readmission rates. The primary expected outcome of this study is that the BMT4me© app will improve the real-time monitoring and medication adherence in children receiving hematopoietic stem cell transplant following discharge, thus improving clinical outcomes.


Assuntos
Adesão à Medicação , Telemedicina , Humanos , Criança , Monitoramento de Medicamentos , Diretivas Antecipadas , Transplante de Células-Tronco , Ensaios Clínicos Controlados Aleatórios como Assunto
8.
J Spec Pediatr Nurs ; 28(3): e12413, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37354039

RESUMO

PURPOSE: The purpose of this paper is to describe the implementation of evidence-based, individualized coping plans and to compare the rates of child anxiety, child cooperation, and parent anxiety before and after implementation of these coping plans for children receiving recurring BoNT-A injections emphasizing the role of Certified Child Life Specialists (CCLSs) within the interdisciplinary team approach. DESIGN AND METHODS: A retrospective chart review was conducted for children receiving BoNT-A injections at a Physical Medicine clinic pre- and post-implementation of the coping plan. Descriptive statistics were used to evaluate care plan implementation, child cooperation, child anxiety, and parent anxiety. RESULTS: Post-implementation of coping care plans, children experienced improved cooperation during BoNT-A injections. Parental anxiety decreased once coping plans were implemented. Documentation improved after the implementation of coping plans specific to areas involving cooperation, child's anxiety and distress, and parental anxiety and distress. It was also noted that there was an increase in child anxiety assessments within documentation. PRACTICE IMPLICATIONS: CCLS were able to utilize their expertise to collaboratively create individualized coping care plans to increase child's cooperation and decrease parental anxiety during BoNT-A injections.


Assuntos
Adaptação Psicológica , Ansiedade , Criança , Humanos , Estudos Retrospectivos , Ansiedade/prevenção & controle
9.
Pediatr Transplant ; 27(1): e14399, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36299233

RESUMO

BACKGROUND: Invasive fungal disease (IFD) is a major source of morbidity and mortality for hematopoietic cell transplant (HCT) recipients. Non-invasive biomarkers, such as the beta-D-glucan assay, may improve the diagnosis of IFD. The objective was to define the utility of surveillance testing using Fungitell® beta-D-glucan (BDG) assay in children receiving antifungal prophylaxis in the immediate post-HCT period. METHODS: Weekly surveillance blood testing with the Fungitell® BDG assay was performed during the early post-HCT period in the context of a randomized trial of children, adolescents, and young adults undergoing allogeneic HCT allocated to triazole or caspofungin prophylaxis. Positivity was defined at the manufacturer cutoff of 80 pg/ml. IFD was adjudicated using blinded central reviewers. The sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) were calculated for the Fungitell® BDG assay for the outcome of proven or probable IFD. RESULTS: A total of 51 patients (out of 290 patients in the parent trial) contributed blood specimens. In total, 278 specimens were evaluated. Specificity was 80.8% (95% confidence interval [CI]: 75.6%-85.3%), and NPV was over 99% (95% CI: 86.8%-99.9%). However, there were no true positive results, resulting in sensitivity of 0% (95% CI: 0.0%-84.2%) and PPV of 0% (95% CI: 0.0%-6.7%). CONCLUSIONS: Fungitell® BDG screening is of limited utility in diagnosing IFD in the post-HCT period, mainly due to high false-positive rates. Fungitell® BDG surveillance testing should not be performed in children during the early post-HCT period while receiving antifungal prophylaxis as the pretest probability for IFD is low.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Infecções Fúngicas Invasivas , beta-Glucanas , Adolescente , Criança , Humanos , Adulto Jovem , Antifúngicos/uso terapêutico , Infecções Fúngicas Invasivas/diagnóstico , Ensaios Clínicos Controlados Aleatórios como Assunto , Sensibilidade e Especificidade
10.
JMIR Res Protoc ; 11(7): e39098, 2022 Jul 21.
Artigo em Inglês | MEDLINE | ID: mdl-35862184

RESUMO

BACKGROUND: In the United States, poor adherence accounts for up to 70% of all medication-related hospital admissions, resulting in $100 billion in health care costs annually. In pediatrics, adherence is largely dependent on caregivers. In a high-risk hematopoietic stem cell transplant (HSCT) population, caregivers are isolated with their child due to infection risk and must manage challenging treatment regimens at home, often with limited time and support. Complex behavioral interventions, typically employed to address adherence, are difficult to deliver and manage in the context of these daily tasks. The most successful adherence interventions, and thus improved clinical outcomes, have included mobile health (mHealth) reminder approaches and a direct measure of adherence. OBJECTIVE: This is a 3-phase project, with this protocol describing phase 2, to determine the usability and feasibility of an mHealth app (BMT4me) designed to promote adherence to immunosuppressant medication and to track symptoms among children who received HSCT. METHODS: This study uses an iterative convergent mixed methods design to develop and assess the usability and feasibility of an adherence digital health intervention. We will recruit 15 caregivers of pediatric patients receiving HSCT to complete user testing. Qualitative and quantitative data will be integrated to enhance and expand upon study findings. RESULTS: Enrollment began in September 2021 and is ongoing. A total of 7 caregivers have enrolled. We anticipate completion by fall 2022. We anticipate high usability scores and a better understanding of unique features within the app that are needed for HSCT families post transplant. To date, usability scores among enrolled participants are greater than 70%. Feedback from qualitative interviews is being used to further adapt the app by adding specific weekly logs, call provider options, and voice to text. CONCLUSIONS: This protocol describes a mixed methods usability and feasibility study to develop and implement a smartphone app for caregivers of children receiving HSCT. The app was designed to improve immunosuppressant adherence and to track symptoms in the acute phase post discharge. Study findings will inform further refinement of the app and the feasibility of a pilot randomized controlled trial examining efficacy on clinical outcomes. TRIAL REGISTRATION: ClinicalTrials.gov NCT04976933; https://clinicaltrials.gov/ct2/show/NCT04976933. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/39098.

11.
Appl Nurs Res ; 65: 151574, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35577481

RESUMO

The COVID-19 pandemic has created unique challenges for recruitment of adults and children into clinical research. The sudden onset of stay-at-home orders and social distancing enacted in much of the United States created sudden barriers for researchers to recruit participants in-person. Recognizing the critical need to understand the impact of COVID-19 on children and families in real time, studies required an alternative approach. The present study sought to develop methods and establish the feasibility of utilizing Facebook's targeted advertising to enroll schoolaged children and their parents for a study examining the impact of the COVID-19 pandemic on families. This study used an 8 week pay-per-click advertisement approach via Facebook for research recruitment. Parents of children age 8 to 17 were invited and asked to include their child. Standardized measures were included for parents and children. Zip code targeting was used to increase diversity in participants. The ad campaign reached 213,120, yielding 3563 clicks, 684 parent participants, 494 child participants and a 26% conversion rate over eight weeks. The cost-per-click was $0.64, and cost-per-participant was $3.30 and $4.60 for parents and children, respectively. This nationwide study successfully used social media to recruit a robust nationwide sample of parent-child dyads during the COVID-19 pandemic. Social media recruitment mitigated typical time and engagement barriers for participants while also circumventing social and physical distancing orders due to the pandemic which allowed for real time assessment of the pandemic's effects on families. Future consideration should be given.to social media as a research recruitment methodology.


Assuntos
COVID-19 , Mídias Sociais , Adolescente , Adulto , Criança , Humanos , Pandemias , Pais , Projetos de Pesquisa
12.
Comput Inform Nurs ; 40(10): 711-717, 2022 Oct 01.
Artigo em Inglês | MEDLINE | ID: mdl-35488880

RESUMO

The COVID-19 pandemic required social and physical distancing to reduce the spread of disease. The reduction in meeting sizes made it difficult to offer traditional in-person EHR training to new and transferring employees. This paper aims to share how one nurse educator team used an innovative approach to transition traditional EHR onboarding education to synchronous remote learning during the global pandemic. Participants in the remote learning course (n = 94) were compared with those who had previously completed the traditional course (n = 110). Postcourse evaluations for each group were comparable. Remote learning participants found the technology conducive to training and reported higher scores for locating and reviewing patient information than those in the traditional course. Providing remote EHR education is comparable with traditional classroom education. Remote learning provided a safe, effective way to onboard new staff during the pandemic.


Assuntos
COVID-19 , Pandemias , COVID-19/prevenção & controle , Registros Eletrônicos de Saúde , Eletrônica , Humanos , Pandemias/prevenção & controle
13.
Pediatr Blood Cancer ; 69(6): e29707, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35384278

RESUMO

AIM: Little research exists on coronavirus (COVID-19) vaccine hesitancy among caregivers of children with cancer. We aimed to (a) describe vaccine hesitancy in parents of children with cancer for both their child and self, and (b) examine the mediating role of parent-reported COVID impact on the association between COVID exposure and vaccine hesitancy. PROCEDURE: We conducted a national survey of parents of children with cancer via Facebook and Momcology, a pediatric cancer community-based organization recruited February-May 2021. Parents completed standardized measures online. A series of mediation models assessed the role of COVID-19 impact (e.g., effects on parenting and well-being) on associations between COVID-19 exposure (e.g., direct/indirect exposure) and vaccine hesitancy. Moderation models examined the role of treatment status, COVID-19 exposure, impact, and vaccine hesitancy. RESULTS: Parents (n = 491; 90% mothers; 93% White) reported moderate vaccine hesitancy (M = 2.08, SD = 0.76). Specifically, 18.5% (n = 90) reported they would not vaccinate their child, and 24.4% (n = 119) would only consider vaccination. Parents expressed higher concerns about vaccine side effects for their children (M = 3.01, SD = 0.95) than for themselves (M = 2.61, SD = 1.03; t[479] = 9.07, p < .01). Mediation analysis revealed a significant indirect effect of impact (95% CI [-0.013, -0.001]) on the association between higher exposure and higher vaccine hesitancy (b = .02, p = .06). There was no moderating effect of treatment status. Income remained a significant covariate (b = -.11, p < .01). CONCLUSION: Lower parent-reported COVID exposure, higher COVID impact, concern for side effects, and lower income may be important factors related to vaccine hesitancy among parents of children with cancer. Providers of childhood cancer survivors should address vaccine hesitancy and potential health risks.


Assuntos
COVID-19 , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Neoplasias , COVID-19/epidemiologia , COVID-19/prevenção & controle , Vacinas contra COVID-19 , Criança , Estudos Transversais , Feminino , Humanos , Neoplasias/terapia , Pais , SARS-CoV-2 , Vacinação , Hesitação Vacinal
14.
Ann Palliat Med ; 11(6): 1888-1899, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-35184568

RESUMO

BACKGROUND: Working in the pediatric intensive care unit (PICU) exposes nurses to intense and recurrent experiences with loss. Such experiences may result in unresolved grief or despair among these providers. Although previous studies have explored grief within the nursing profession, few have focused on grief following the death of children in the PICU, where sudden or traumatic deaths are more frequent. The aim of this study was to characterize the degree to which pediatric critical care (PCC) nurses experience symptoms of grief or distress following the suffering and/or death of a patient in the PICU. METHODS: An email invited PICU nurses at a large free standing children's hospital to complete an online survey with demographic questions and an open-ended, qualitative question about grief experiences. Research team members coded open-ended responses, using thematic content analysis. Final themes were further validated via member checking. RESULTS: Of the 104 participants, most were Caucasian (96.3%), female (97%), bedside (83.5%) nurses with a bachelor's degree (85.4%). Participants had variable years of experience and included both day (59.6%) and night (40.4%) shift nurses. After detailed analysis, the research team identified four major themes among pediatric critical care (PCC) nurses when asked about grief symptoms and distress following the suffering or death of a patient in the PICU: (I) continuum of emotional responses; (II) emotional prompts; (III) coping, and (IV) resilience. CONCLUSIONS: Many PICU nurses were profoundly affected by the death of their patients, while others offered strategies that fostered resilience. Understanding the impact of repeated loss on these specialized nurses may inform the development of more effective grief and bereavement support programs for healthcare providers.


Assuntos
Pesar , Assistência Terminal , Adaptação Psicológica , Criança , Cuidados Críticos , Feminino , Humanos , Unidades de Terapia Intensiva Pediátrica
15.
J Forensic Nurs ; 18(3): 164-173, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35045046

RESUMO

INTRODUCTION: The purpose of this study was to compare child sexual abuse interview disclosures and judicial outcomes for cases of child and adolescent sexual abuse/assault seen in a pediatric emergency department (PED) before and after the implementation of a simulated child advocacy center (CAC) multidisciplinary model of care. METHOD: A retrospective chart and legal records review was conducted from both the PED model of care group and the simulated CAC multidisciplinary model of care for judicial outcomes, child sexual abuse interview disclosures, and sexual abuse case characteristics. RESULTS: The simulated CAC multidisciplinary model of care did not result in increased indictments, pleas, trials, or disclosure of sexual abuse in the sexual abuse interview when compared with the PED model of care. The simulated CAC multidisciplinary model of care did result in a significantly higher rate of sexual abuse interview completion. DISCUSSION: Demographic risk factors for sexual abuse victimization as well as perpetration have been identified in the literature and were supported by this study. Law enforcement and child protective services were more frequently present in the PED under the simulated CAC multidisciplinary model allowing for improved protection of children.


Assuntos
Abuso Sexual na Infância , Maus-Tratos Infantis , Adolescente , Criança , Defesa da Criança e do Adolescente , Serviço Hospitalar de Emergência , Humanos , Estudos Retrospectivos
16.
Bone Marrow Transplant ; 57(4): 547-553, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-35075246

RESUMO

There is paucity of data on COVID-19 vaccine hesitancy amongst parents of pediatric (age ≤ 17 years) hematopoietic cell transplant (HCT) recipients. We conducted a cross-sectional study to determined COVID-19 vaccine hesitancy, and COVID-19 impact on family and related distress in this population. A national group (n = 80) was recruited via social media (Facebook) from February-May 2021. With vaccine approval for ≥12 years in July 2021, a second group (n = 37) was recruited locally. Parents completed surveys including the Vaccine Hesitancy Questionnaire and COVID-19 Exposure and Family Impact Scale (CEFIS). Nonparametric statistics were used to analyze results and factors impacting Vaccine Hesitancy Scores (VHS). The majority of parents were non-Hispanic White (≥90%) and children ≥3 months post-HCT (85%). Mean CEFIS score (scale 0-60) was 41.11 (SD = 8.24), with higher scores indicating negative impact of the pandemic. Mean (± standard deviation) VHS was 2.87 (±0.79) on a scale of 1-4, with 1 indicating higher and 4 lower hesitancy. Concerns about vaccine related side effects, lower parental age, child age, household income, and education were associated with lower VHS. Receiving reliable information and recommendations by providers was associated with higher VHS. Improving vaccine acceptance in this population is critical in protecting pediatric HCT recipients.


Assuntos
COVID-19 , Transplante de Células-Tronco Hematopoéticas , Vacinas , Adolescente , COVID-19/prevenção & controle , Vacinas contra COVID-19 , Criança , Estudos Transversais , Humanos , Pais , SARS-CoV-2 , Vacinação , Hesitação Vacinal
17.
J Spec Pediatr Nurs ; 27(1): e12354, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34374481

RESUMO

CLINICAL PROBLEM: Children with cerebral palsy (CP) typically receive care from multiple specialty providers including Developmental Pediatrics, Orthopedics, Physical Medicine, Occupational Therapy, Physical Therapy, Speech Therapy, Clinical Social Work, Clinical Nutrition, Nursing and Orthotists, which often require many individual visits to the hospital annually. The potential for conflicting plans of care is increased by this fragmented approach, which may lead to duplication of services and increased healthcare costs. SOLUTION: To address the problem and alleviate burden for families, the Comprehensive Cerebral Palsy Program implemented a nurse-led comprehensive interdisciplinary team approach to provide optimal care coordination to patients and families, using an Integrative Holistic Care Plan (IHCP). During an annual 3-4 hour Comprehensive CP Clinic appointment, a team of specialists meets with the family, and a holistic, evidence-based plan of care is developed. The family-centered care plan includes summaries of each discipline's plan of care with individualized goals, recommendations, and evidence-based outcomes. After the visit, the plan of care is communicated with the family, primary care provider, and other community providers to ensure continuity of care. RESULTS: Early in the program and electronic IHCP development stage, clinical, and financial outcomes were improved. In addition to significant cost savings, family satisfaction surveys showed continuous improvement in the areas of access, communication, and coordination of care. PRACTICE IMPLICATIONS: Nurses working in interdisciplinary clinics are in a position to facilitate improved outcomes by developing and implementing a family-centered care plan that provides a comprehensive holistic approach to impacting the areas of quality, effectiveness, and efficiency of care delivery. The use of an IHCP decreases fragmentation of care and duplication of services leading to healthcare cost savings and enhanced patient satisfaction.


Assuntos
Paralisia Cerebral , Criança , Hospitais , Humanos , Papel do Profissional de Enfermagem , Satisfação do Paciente
18.
Front Psychol ; 13: 1079848, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36710839

RESUMO

COVID-19 resulted in mass quarantine measures early in the pandemic. This disruption of daily life widened inequities and made children one of the most vulnerable populations during the crisis. This national, cross-sectional "COVID-Kids" study collected data from almost 500 parent-child dyads using standardized measures to better understand the effects of COVID exposure and impact on children's quality of life and loneliness. Data were collected via social media from May to July 2020. According to parent proxy and child self-report, United States children experienced worse quality of life (p < 0.0001; d = 0.45 and 0.53) and greater child-reported loneliness (p < 0.0001) when compared to normative, healthy samples (i.e., children who do not have a chronic medical condition). Older children (r = 0.16, p = 0.001) and female children (r = 0.11, p = 0.02) reported greater loneliness. Higher child-reported family functioning scores were associated with better quality of life (r = 0.36, p < 0.0001) and less loneliness (r = -0.49, p < 0.0001). Moderated mediation analyses indicated the indirect effect of parent COVID impact on the association between COVID exposure and child quality of life was weaker in the context of better family functioning. Results of this study raise concern for the short-and long-term sequelae of the pandemic on the physical and mental health of children. Healthcare providers and researchers must find new and innovative ways to protect the well-being of children. Strengthening family functioning may buffer the effects of the pandemic and improve overall quality of life in our "COVID Kids."

19.
Cancer Nurs ; 44(6): E520-E530, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33813530

RESUMO

BACKGROUND: Discharge education practices vary among institutions and lack a standardized approach for newly diagnosed pediatric oncology patients and their parents. OBJECTIVE: The purpose of this American Nurses Credentialing Center-supported pediatric multisite trial was to determine the feasibility and effectiveness of 2 nurse-led Parent Education Discharge Support Strategies (PEDSS) for families with a child who is newly diagnosed with cancer. INTERVENTIONS/METHODS: A cluster randomized clinical trial design assigned 16 Magnet-designated sites to a symptom management PEDSS intervention or parent support and coping PEDSS intervention. Outcome measures evaluated at baseline, 1, and 2 months after diagnosis include symptom experiences, parent perceptions of care, unplanned service utilization, and parent evaluation of the PEDSS interventions. RESULTS: There were 283 newly diagnosed children and their parent participating in this study. Linear mixed models revealed pain differed over time by the intervention; children in the symptom management group had a greater decrease in pain. Greater nausea and appetite disturbances were experienced by older children in both groups. Fatigue and sleep disturbance showed a significant decrease over time in both groups. The symptom management group reported significantly greater satisfaction with the PEDSS intervention. CONCLUSIONS: This study is among the first to examine the effects of 2 different early-discharge planning strategies for families of a newly diagnosed child with cancer. The evidence supports a standardized discharge education strategy that can be successfully implemented across institutions. IMPLICATIONS FOR PRACTICE: Nurses play a major role in the educational preparation and discharge of newly diagnosed pediatric cancer patients and their families.


Assuntos
Neoplasias , Alta do Paciente , Adaptação Psicológica , Adolescente , Criança , Humanos , Oncologia , Neoplasias/terapia , Pais
20.
J Emerg Nurs ; 47(4): 627-632, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33714567

RESUMO

A neonatal lumbar puncture can present many challenges for emergency nurses that may not be seen with older children or adults. It is imperative that emergency nurses have the knowledge and training related to the procedure to ensure a positive process for the neonate, involved family and health care team members, as well as the overall outcomes of the procedure. This paper provides a practical guide to the essential knowledge for a neonatal lumbar puncture in the emergency department. The main points conveyed in this paper include considerations such as indications for a neonatal lumbar puncture, how to prepare for the procedure, how to position the neonate, possible complications, and caregiver support.


Assuntos
Enfermeiras e Enfermeiros , Punção Espinal , Adolescente , Adulto , Criança , Serviço Hospitalar de Emergência , Humanos , Recém-Nascido
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