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1.
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
2.
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
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.
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
5.
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
6.
Support Care Cancer ; 29(2): 1121-1128, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-32647995

RESUMO

BACKGROUND AND OBJECTIVE: Many children receiving chemotherapy struggle with therapy-induced side effects. To date, there has been no literature investigating the needs, knowledge, or implementation of osteopathic manipulative treatments (OMT) as a supportive care option in pediatric oncology. We hypothesized that pediatric oncology clinicians, caregivers, and patients have (a) limited knowledge of OMT and (b) dissatisfaction with current supportive care options and (c) would be interested in having OMT available during chemotherapy, once educated. METHODS: Participants included three cohorts: (1) children aged ≥ 9 years, diagnosed with cancer and actively receiving chemotherapy; (2) their caregivers; and (3) oncology clinicians at Nationwide Children's Hospital. Participants completed 1:1 semi-structured interviews, which were audio-recorded, transcribed, and analyzed for thematic content regarding their perception of supportive care measures and views on OMT. Quantitative data was summarized descriptively. RESULTS: A total of 60 participants completed the interview. Participants demonstrated limited awareness of osteopathic medicine; no participant had more than "some" knowledge of OMT. After education about OMT using a brief video, all clinicians, caregivers, and 95% of patients were receptive to OMT as a supportive care option. Major themes included the following: (a) patients have uncontrolled chemotherapy side effects, (b) improved supportive care options are desired, and (c) osteopathic medicine is a favorable supportive care adjunct. CONCLUSIONS: Pediatric oncology clinicians, caregivers, and patients reported a need for better management of chemotherapy-associated side effects and an interest in utilizing OMT. These findings support further investigation into the safety, feasibility, and efficacy of implementing OMT in the pediatric oncology clinical setting.


Assuntos
Cuidadores/normas , Medicina Osteopática/métodos , Cuidados Paliativos/métodos , Pacientes/estatística & dados numéricos , Médicos/normas , Criança , Feminino , Humanos , Masculino , Oncologia
7.
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
8.
Pediatr Transplant ; 24(6): e13786, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32678483

RESUMO

Pediatric HSCT patients endure complicated treatment regimens, lifestyle modifications, and a lifetime of long-term follow-up. Treatment adherence in this population is understudied and prevalence unknown. Providers (physicians and advanced practice nurses) in this study completed an online-structured questionnaire about definition, assessment, and perceived rates of adherence. Researchers' extracted 187 statements from participants' responses. The majority (n = 12, 71%) of providers reported adherence as a primary concern in outpatient HSCT. The major concern for providers was the potential of non-adherence to negatively affect outcomes. Providers also shared clinical examples of non-adherence. This study contributes to a better understanding of providers' perceptions of adherence within pediatric HSCT. Additional research is needed to describe, define, and improve adherence in pediatric HSCT to ultimately improve outcomes and quality of life for this vulnerable population.


Assuntos
Atitude do Pessoal de Saúde , Transplante de Células-Tronco Hematopoéticas/métodos , Cooperação do Paciente , Percepção , Criança , Feminino , Teoria Fundamentada , Humanos , Internet , Estilo de Vida , Masculino , Mentores , Pacientes Ambulatoriais , Prevalência , Pesquisa Qualitativa , Qualidade de Vida , Inquéritos e Questionários , Resultado do Tratamento , Populações Vulneráveis
9.
Mol Ther ; 27(11): 1930-1938, 2019 11 06.
Artigo em Inglês | MEDLINE | ID: mdl-31570234

RESUMO

Seprehvir (HSV1716) is an oncolytic herpes simplex virus-1 (HSV-1) previously demonstrated to be well tolerated in pediatric patients when administered intratumorally. To determine the safety of administering Seprehvir systemically, we conducted the first-in-human phase I trial of intravenous injection in young patients with relapsed or refractory extra-cranial solid cancers. We delivered a single dose of 5 × 104 infectious units (iu)/kg (maximum dose of 2 × 106) or 2.5 × 105 iu/kg (maximum dose of 1 × 107 iu) of Seprehvir via the peripheral vein, monitored adverse events, and measured tumor responses by imaging. We monitored HSV-1 serology as well as viremia and shedding by PCR and culture. We administered a single dose of Seprehvir to seven patients and multiple doses to two patients. We did not observe any dose-limiting toxicities. All five HSV-1 seronegative patients seroconverted by day 28. Four of nine patients had detectable HSV-1 genomes in peripheral blood appearing on day +4 consistent with de novo virus replication. Two patients had stable disease in response to Seprehvir. Intravenous Seprehvir is well tolerated without viral shedding in children and young adults with late-stage cancer. Viremia consistent with virus replication holds promise for future Seprehvir studies at higher doses and/or in combination with other anti-neoplastic therapies.


Assuntos
Terapia Genética , Vetores Genéticos/genética , Herpesvirus Humano 1/genética , Neoplasias/terapia , Terapia Viral Oncolítica , Vírus Oncolíticos/genética , Administração Intravenosa , Adolescente , Adulto , Fatores Etários , Criança , Feminino , Terapia Genética/efeitos adversos , Terapia Genética/métodos , Vetores Genéticos/administração & dosagem , Humanos , Masculino , Neoplasias/diagnóstico , Terapia Viral Oncolítica/efeitos adversos , Terapia Viral Oncolítica/métodos , Tomografia por Emissão de Pósitrons , Resultado do Tratamento , Adulto Jovem
10.
Pediatr Transplant ; 23(5): e13451, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31066981

RESUMO

The purpose of this study was to examine the potential predictive value of the Medication Level Variability Index (MLVI) biomarker with graft-versus-host disease (GVHD) in the pediatric hematopoietic stem cell transplant (HSCT) patient during the acute phase post-transplant. This retrospective descriptive study evaluated a total of 406 tacrolimus levels in 64 patients over a varying number of weeks per participant (median = 8, min = 3, max = 11). Patients were followed until Day 100 post-transplant or tacrolimus taper began. A total of 72 episodes of non-therapeutic levels occurred during the acute phase. Of those, 40 (56%) were <5, while 32 (44%) were >15. Approximately 39% (n = 25 of 64) of the participants in the study developed GVHD post-discharge. Those with GVHD had a statistically significantly higher MLVI than those that did not (median = 3.1, IQR = 2.5-4.7 vs 2.3, IQR = 1.6-3.4, respectively, P = 0.024). Using a criterion of MLVI > 3, there was a statistically significant increased likelihood of GVHD (OR = 3.82, 95% CI=1.32 = 11.04, P = 0.013). Area under the curve (AUC) calculation for the sensitivity and specificity of using the MLVI for GVHD was also conducted. The AUC of 0.67 was statistically significant (95% CI 0.53-0.81, P = 0.024). This is the first-known study to report the use of the MLVI in HSCT patients. The MLVI is associated with a main adverse outcome related to HSCT, GVHD. These results are encouraging of a new potential biomarker to evaluate tacrolimus serum assay levels and identify patients at risk for developing GVHD.


Assuntos
Biomarcadores/sangue , Doença Enxerto-Hospedeiro/sangue , Transplante de Células-Tronco Hematopoéticas , Imunossupressores/farmacocinética , Tacrolimo/farmacocinética , Adolescente , Criança , Pré-Escolar , Relação Dose-Resposta a Droga , Feminino , Humanos , Imunossupressores/administração & dosagem , Lactente , Masculino , Valor Preditivo dos Testes , Estudos Retrospectivos , Sensibilidade e Especificidade , Tacrolimo/administração & dosagem , Adulto Jovem
11.
Biol Blood Marrow Transplant ; 22(10): 1823-1828, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-27496218

RESUMO

Veno-occlusive disease (VOD) is a potentially fatal complication of hematopoietic stem cell transplantation (HSCT). Patients with VOD are often critically ill and require close collaboration between transplant physicians and intensivists. We surveyed members of a consortium of pediatric intensive care unit (PICU) and transplant physicians to assess variability in the self-reported approach to the diagnosis and management of VOD. An internet-based self-administered survey was sent to pediatric HSCT and PICU providers from September 2014 to February 2015. The survey contained questions relating to the diagnosis and treatment of VOD. The response rate was 41% of 382 providers surveyed. We found significant variability in the diagnostic and management approaches to VOD in children. Even though ultrasound is not part of the diagnostic criteria, providers reported using reversal of portal venous flow seen on abdominal ultrasound in addition to Seattle criteria (70%) or Baltimore criteria to make the diagnosis of VOD. Almost 40% of respondents did not diagnose VOD in anicteric patients (bilirubin < 2 mg/dL). Most providers (75%) initiated treatment with defibrotide at the time of diagnosis, but 14%, 7%, and 6% of the providers waited for reversal of portal venous flow, renal dysfunction, or pulmonary dysfunction, respectively, to develop before initiating therapy. Only 50% of the providers restricted fluids to 75% of the daily maintenance, whereas 21% did not restrict fluids at all. Albumin with diuretics was used by 95% of respondents. Platelets counts were maintained at 20,000 to 50,000/mm(3) and 10,000 to 20,000/mm(3) by 64% and 20% of the respondents, respectively. Paracentesis was generally initiated in the setting of oliguria or hypoxia, and nearly 50% of the providers used continuous drainage to gravity, whereas the remainder used an intermittent drainage approach. Nearly 73% of the transplant providers used VOD prophylaxis, whereas the remainder did not use any medications for VOD prophylaxis. There was also considerable variation in the management strategies among the transplant and critical care providers. We conclude that there is considerable self-reported variability in the diagnosis and management of VOD in children. The practice variations reported in this study should encourage the development of standard practice guidelines, which will be helpful in improving the outcome of this potentially fatal complication.


Assuntos
Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Hepatopatia Veno-Oclusiva/diagnóstico , Hepatopatia Veno-Oclusiva/terapia , Líquidos Corporais/metabolismo , Criança , Atenção à Saúde/estatística & dados numéricos , Gerenciamento Clínico , Diuréticos/uso terapêutico , Feminino , Humanos , Masculino , Paracentese/métodos , Contagem de Plaquetas , Polidesoxirribonucleotídeos/uso terapêutico , Padrões de Prática Médica/estatística & dados numéricos , Inquéritos e Questionários , Tempo para o Tratamento
12.
Biol Blood Marrow Transplant ; 21(1): 67-73, 2015 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-25270958

RESUMO

Idiopathic pneumonia syndrome (IPS) is an acute, noninfectious lung disorder associated with high morbidity and mortality after hematopoietic cell transplantation. Previous studies have suggested a role for TNFα in the pathogenesis of IPS. We report a multicenter phase II trial investigating a soluble TNF-binding protein, etanercept (Enbrel, Amgen, Thousand Oaks, CA), for the treatment of pediatric patients with IPS. Eligible patients were < 18 years old, within 120 days after transplantation, and with radiographic evidence of a diffuse pneumonitis. All patients underwent a pretherapy broncho-alveolor lavage (BAL) to establish the diagnosis of IPS. Systemic corticosteroids (2.0 mg/kg/day) plus etanercept (.4 mg/kg twice weekly × 8 doses) were administered. Response was defined as survival and discontinuation of supplemental oxygen support by day 28 of study. Thirty-nine patients (median age, 11 years; range, 1 to 17) were enrolled, with 11 of 39 patients nonevaluable because of identification of pathogens from their pretherapy BAL. In the remaining 28 patients, the median fraction of inspired oxygen at study entry was 45%, with 17 of 28 requiring mechanical ventilation. Complete responses were seen in 20 (71%) patients, with a median time to response of 10 days (range, 1 to 24). Response rates were higher for patients not requiring mechanical ventilation at study entry (100% versus 53%, P = .01). Overall survival at 28 days and 1 year after therapy were 89% (95% confidence interval [CI], 70% to 96%) and 63% (95% CI, 42% to 79%), respectively. Plasma levels of proinflammatory cytokines were significantly increased at onset of therapy, subsequently decreasing in responding patients. The addition of etanercept to high-dose corticosteroids was associated with high response rates and survival in children with IPS.


Assuntos
Corticosteroides/uso terapêutico , Neoplasias Hematológicas/terapia , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Pneumonias Intersticiais Idiopáticas/terapia , Imunoglobulina G/uso terapêutico , Imunossupressores/uso terapêutico , Receptores do Fator de Necrose Tumoral/uso terapêutico , Adolescente , Líquido da Lavagem Broncoalveolar/química , Líquido da Lavagem Broncoalveolar/citologia , Criança , Pré-Escolar , Citocinas/biossíntese , Citocinas/imunologia , Quimioterapia Combinada , Etanercepte , Feminino , Neoplasias Hematológicas/imunologia , Neoplasias Hematológicas/mortalidade , Neoplasias Hematológicas/patologia , Humanos , Pneumonias Intersticiais Idiopáticas/etiologia , Pneumonias Intersticiais Idiopáticas/mortalidade , Pneumonias Intersticiais Idiopáticas/patologia , Lactente , Masculino , Receptores do Fator de Necrose Tumoral/antagonistas & inibidores , Respiração Artificial , Irmãos , Análise de Sobrevida , Transplante Homólogo , Resultado do Tratamento , Doadores não Relacionados
13.
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
14.
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
15.
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
16.
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
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.
Clin J Oncol Nurs ; 24(5): E57-E64, 2020 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-32945801

RESUMO

BACKGROUND: Researchers have estimated that about 50% of pediatric patients with chronic illness adhere to tacrolimus therapy, a medication responsible for preventing critical side effects in patients undergoing hematopoietic stem cell transplantation (HSCT). OBJECTIVES: The purpose of this study was to describe patient adherence to tacrolimus by reviewing documentation from the electronic health record and therapeutic drug levels. METHODS: This retrospective descriptive study examined 357 clinic visits by 57 patients undergoing HSCT. Direct (tacrolimus levels) and indirect (subjective reporting) measures were evaluated. FINDINGS: The authors found that, in 51% of visits, adherence was not documented. The overall nontherapeutic drug level rate was 60%. Because of the small sample size, nonadherence did not statistically correlate with nontherapeutic levels. The findings highlight the need for adherence awareness, assessment, and documentation in clinical practice.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Imunossupressores , Neoplasias , Tacrolimo , Criança , Humanos , Imunossupressores/uso terapêutico , Adesão à Medicação , Neoplasias/tratamento farmacológico , Estudos Retrospectivos , Tacrolimo/uso terapêutico
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