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Objectives: Participation in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) has numerous benefits, yet many eligible children remain unenrolled. This qualitative study sought to explore perceptions of a novel electronic health record (EHR) intervention to facilitate referrals to WIC and improve communication/coordination between WIC staff and healthcare professionals. Methods: WIC staff in three counties were provided EHR access and recruited to participate. An automated, EHR-embedded WIC participation screening and referral tool was implemented within 8 healthcare clinics; healthcare professionals within these clinics were eligible to participate. The interview guide was developed using the Consolidated Framework for Implementation Research to elicit perceptions of this novel EHR-based intervention. Semi-structured interviews were conducted via telephone. Interviews were recorded, transcribed, coded, and analyzed using thematic analysis. Results: Twenty semi-structured interviews were conducted with eight WIC staff, seven pediatricians, four medical assistants, and one registered nurse. Most participants self-identified as female (95%) and White (55%). We identified four primary themes: (1) healthcare professionals had a positive view of WIC but communication and coordination between WIC and healthcare professionals was limited prior to WIC having EHR access; (2) healthcare professionals favored WIC screening using the EHR but workflow challenges existed; (3) EHR connections between WIC and the healthcare system can streamline referrals to and enrollment in WIC; and (4) WIC staff and healthcare professionals recommended that WIC have EHR access. Conclusions: A novel EHR-based intervention has potential to facilitate healthcare referrals to WIC and improve communication/coordination between WIC and healthcare systems.
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BACKGROUND: Providing high-quality psychosocial care to parents and other primary caregivers of children with cancer (henceforth referred to as caregivers) is important, given the numerous challenges associated with a pediatric cancer diagnosis and the increased risk for negative psychosocial sequelae among caregivers. The Electronic Surviving Cancer Competently Intervention Program (eSCCIP) is a psychosocial eHealth intervention for caregivers, developed using an iterative, user-centered process. METHOD: eSCCIP was tested in a single-arm pilot trial at Nemours Children's Hospital, Delaware (NCT05333601). The primary outcomes were intervention acceptability and feasibility, assessed via enrollment and retention targets, and item-level acceptability ratings. Enrollment and retention targets of 45% were set based on previous work, and an item-level acceptability threshold of 80% was set. A secondary exploratory analysis was conducted examining acute distress, anxiety, symptoms of post-traumatic stress, and family functioning. RESULTS: 44 caregivers enrolled in the study and 31 completed. The intervention was rated favorably by completers, with over 80% of the sample selecting "mostly true" or "very true" for all items of the eSCCIP Evaluation Questionnaire, which was used to assess acceptability and feasibility. Enrollment and retention rates were 54% and 70%, respectively. Exploratory psychosocial outcomes showed statistically significant decreases from pre-intervention to post-intervention for overall symptoms of post-traumatic stress disorder (PTSD), cluster D symptoms of PTSD (negative mood and cognitions), and anxiety. Small-moderate effect sizes were observed for all psychosocial outcomes of interest. CONCLUSIONS: eSCCIP is an acceptable and feasible intervention for caregivers. Results are promising regarding reductions in symptoms of post-traumatic stress and anxiety.
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Neoplasias , Transtornos de Estresse Pós-Traumáticos , Criança , Humanos , Ansiedade/terapia , Cuidadores/psicologia , Estudos de Viabilidade , Neoplasias/psicologia , Projetos Piloto , Transtornos de Estresse Pós-Traumáticos/terapia , Transtornos de Estresse Pós-Traumáticos/psicologiaRESUMO
OBJECTIVE: To understand the impact of the coronavirus disease 2019 (COVID-19) pandemic on adolescents and young adults (AYAs), we adapted the COVID-19 Exposure and Family Impact Scales (CEFIS; Kazak et al., 2021) for AYAs. Here, we report on the development, structure, and psychometric properties of the CEFIS-AYA. METHODS: The CEFIS-AYA was developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 3,912 AYAs from 21 programs at 16 institutions across the United States were collected from May 2020 to April 2021. We examined the underlying structure of the CEFIS-AYA using principal component analysis (PCA), calculated internal consistencies, and explored differences in scores by gender and age. RESULTS: Participants reported exposure to a range of COVID-19-related events (M = 9.08 events, of 28). On the bidirectional 4-point Impact scale, mean item scores were mostly above the midpoint, indicating a slightly negative impact. Kuder-Richardson 20/Cronbach's Alpha was good for Exposure (α = .76) and excellent for Impact (α = .93). PCA identified seven factors for Exposure (Severe COVID-19, Loss of Income, Limited Access to Essentials, COVID-19 Exposure, Disruptions to Activities, Disruptions to Living Conditions, and Designation as an Essential Worker) and five for Impact (Self and Family Relationships, Physical Well-Being, Emotional Well-Being, Social Well-Being, and Distress). Gender and age differences in CEFIS-AYA scores were identified. DISCUSSION: Initial reliability data are strong and support use of the CEFIS-AYA for measuring the effect of the COVID-19 pandemic on AYAs in research and clinical care.
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COVID-19 , Neoplasias , Adolescente , COVID-19/epidemiologia , Humanos , Neoplasias/psicologia , Pandemias , Psicometria , Reprodutibilidade dos Testes , Adulto JovemRESUMO
OBJECTIVE: Immigration status is a known social driver of health. Little research exists on addressing concerns about immigration status in primary care. The objective of this study is to understand the experiences of immigrant families that received a clinical-community intervention to address immigration-related concerns. METHODS: We conducted a mixed-methods study: an embedded experimental design study. We implemented an immigration-focused legal needs screening tool and referral intervention at one academic primary care clinic in January 2018. Caregivers who screened positive for immigration-related concerns and were referred to a local immigration law firm were invited to participate in a semi-structured interview. Interviews were recorded, de-identified, transcribed, and systematically coded using an inductive content analysis approach. A modified constant comparative method was used to iteratively review codes, identify emerging themes, and resolve differences through consensus. RESULTS: Nineteen caregivers reported immigration-related legal concerns, seven of whom were interviewed. Most (84.2%) were mothers, identified as Hispanic (94.7%), were from Mexico (52.6%), and reported persecution and fear of returning to their country of origin (57.9%). In interviews, we identified three major themes: (1) families were motivated to immigrate due to mental health trauma and persecution; (2) families sought legal services for several immigration-related concerns; and (3) families experienced challenges in navigating the legal system, with which clinics may assist. CONCLUSION: This study demonstrates the need for immigration-related services in primary care settings and the feasibility and potential benefits of implementing a legal screening and referral intervention.
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Emigrantes e Imigrantes , Emigração e Imigração , Criança , Atenção à Saúde , Hispânico ou Latino , Humanos , Saúde MentalRESUMO
BACKGROUND: The Electronic Surviving Cancer Competently Intervention Program (eSCCIP), a psychosocial eHealth intervention for parents and caregivers of children with cancer (parents), was delivered in a community-based psychosocial oncology center. Primary endpoints were intervention acceptability, feasibility, and accessibility, with a secondary exploratory focus on psychosocial outcomes. PROCEDURE: Oncology therapists in a psychosocial oncology center were trained in eSCCIP delivery. Participants were eligible for participation if they were the primary caregiver of a child with cancer between the ages 0 and 17, could read and write in English, and had reliable internet access to complete eSCCIP. Surveys were administered electronically at baseline and post intervention to evaluate study endpoints. Effect sizes (Cohen's d) were computed for exploratory psychosocial outcomes. Nineteen parents completed the intervention. RESULTS: Parents rated eSCCIP as highly acceptable, feasible, and accessible. A large clinical effect was detected for acute distress (d = 0.79). Moderate clinical effects were reported for overall posttraumatic stress disorder (PTSD) symptoms (d = 0.37), negative mood/cognitions (d = 0.59), and symptoms of anxiety (d = 0.48). CONCLUSIONS: Results indicate that eSCCIP is an acceptable, feasible, and accessible psychosocial intervention for parents. Exploratory analyses suggest that participation in eSCCIP may contribute to decreases in acute distress, symptoms of anxiety, and symptoms of PTSD.
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Cuidadores , Neoplasias , Pais , Intervenção Psicossocial , Telemedicina , Adolescente , Criança , Pré-Escolar , Humanos , Lactente , Recém-Nascido , Neoplasias/terapiaRESUMO
OBJECTIVE: In response to the rapidly unfolding coronavirus disease 2019 (COVID-19) pandemic in spring 2020, we developed a caregiver-report measure to understand the extent to which children and families were exposed to events related to COVID-19 and their perceptions of its impact. This article reports on the factor structure and psychometric properties of this measure. METHODS: The COVID-19 Exposure and Family Impact Scales (CEFIS) were developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 1805 caregivers recruited from 28 programs at 15 institutions across the United States were collected from May-September 2020. We examined the underlying structure of the CEFIS using exploratory factor analyses and its internal consistency (Cronbach's alpha). RESULTS: Participants reported a range of COVID-19-related events (M = 8.71 events of 25). On the bidirectional 4-point impact scale, mean scores were mostly above the midpoint, indicating a slightly negative impact. Cronbach's alpha was excellent for Exposure (α = .80) and Impact (α = .92). Factor analysis identified six factors for Exposure (COVID-19 experiences, Access to essentials, Disruptions to living conditions, Loss of income, Family caregiving and activities, and Designation as an essential worker). There were three factors for Impact (Personal well-being, Family interactions, and Distress). DISCUSSION: The CEFIS has strong factors assessing Exposure to events related to COVID-19, and the Impact of these events on families of children in pediatric healthcare. These initial validation data support use of the CEFIS for measuring the effect of the pandemic.
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COVID-19 , Cuidadores , Criança , Humanos , Psicometria , Reprodutibilidade dos Testes , SARS-CoV-2 , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: Caregiver resilience in the context of childhood cancer treatment has been described using cross-sectional and retrospective studies, but little is known about prospective predictors of resilience outcomes. We examined associations of demographics, cancer-related variables, and intrapersonal and interpersonal factors at diagnosis (family psychosocial risk, perceived social support, and healthcare self-efficacy) and psychosocial services provided during treatment with caregiver resilience outcomes at the end of treatment. METHODS: For a study validating a family psychosocial risk screener, 314 primary caregivers completed the measures at diagnosis of their child (aged 0-17 years) and when cancer treatment ended. Resilience outcomes were ratings of distress, posttraumatic stress, and posttraumatic growth. Multiple regression analyses evaluated the relative contribution of hypothesized predictors. RESULTS: Caregivers endorsed clinically significant distress, moderate posttraumatic growth, and low posttraumatic stress based on norms. Posttraumatic growth was not associated with posttraumatic stress or distress, which were significantly associated with each other. Over and above resilience at diagnosis, family psychosocial risk was associated with resilience at the end of treatment. Perceived social support, healthcare self-efficacy, and psychosocial services provided demonstrated associations with resilience in univariate analyses, but demographics and cancer-related variables did not. CONCLUSIONS: Resilience and family psychosocial risk at diagnosis were the strongest predictors of caregiver resilience outcomes at the end of the treatment. Intrapersonal and interpersonal predictors were weaker and varied by resilience measure. Consistent with psychosocial standards of care, broad evaluation of caregiver risks, resources, and resilience processes and outcomes is recommended at diagnosis and through the treatment trajectory including the end of treatment.
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Neoplasias , Crescimento Psicológico Pós-Traumático , Resiliência Psicológica , Adaptação Psicológica , Cuidadores , Criança , Estudos Transversais , Humanos , Neoplasias/terapia , Estudos Retrospectivos , Apoio SocialAssuntos
Humanos , Masculino , Gravidez , Recém-Nascido , Adolescente , Anormalidades Congênitas , Gêmeos Unidos , Fenda LabialRESUMO
Aedes aegypti is the main vector of dengue, chikungunya, and Zika viruses, which are of great public health importance in Colombia. Aedes control strategies in Colombia rely heavily on the use of organophosphate and pyrethroid insecticides, providing constant selection pressure and the emergence of resistant populations. In recent years, insecticide use has increased due to the increased incidence of dengue and recent introductions of chikungunya and Zika. In the present study, pyrethroid resistance was studied across six populations of Ae. aegypti from the Caribbean coast of Colombia. Susceptibility to λ-cyhalothrin, deltamethrin, and permethrin was assessed, and resistance intensity was determined. Activity levels of enzymes associated with resistance were measured, and the frequencies of three kdr alleles (V1016I, F1534C, V410L) were calculated. Results showed variations in pyrethroid susceptibility across Ae. aegypti populations and altered enzyme activity levels were detected. The kdr alleles were detected in all populations, with high variations in frequencies: V1016I (frequency ranging from 0.15-0.70), F1534C (range 0.94-1.00), and V410L (range 0.05-0.72). In assays of phenotyped individuals, associations were observed between the presence of V1016I, F1534C, and V410L alleles and resistance to the evaluated pyrethroids, as well as between the VI1016/CC1534/VL410 tri-locus genotype and λ-cyhalothrin and permethrin resistance. The results of the present study contribute to the knowledge of the mechanisms underlying the resistance to key pyrethroids used to control Ae. aegypti along the Caribbean coast of Colombia.
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Aedes/genética , Resistência a Inseticidas , Mutação , Piretrinas/farmacologia , Receptor 2 de Fatores de Crescimento do Endotélio Vascular/genética , Aedes/efeitos dos fármacos , Animais , Colômbia , Frequência do Gene , Proteínas de Insetos/genética , Masculino , Nitrilas/farmacologia , Permetrina/farmacologia , FenótipoRESUMO
BACKGROUND: The impact of pediatric hematopoietic stem cell transplant (HCT) on family functioning varies, but little is known about how the timing of HCT in children's treatment course contributes to this variability. This study examines how preexisting child, sibling, and family problems, the length of time between diagnosis to HCT, and children's age at HCT are associated with family and caregiver functioning. PROCEDURE: Caregivers (n = 140) of children (≤18 years old) scheduled to undergo their first HCT completed the Psychological Assessment Tool-HCT and the Impact on Family Scale. Treatment information was extracted from electronic medical records. A bootstrapped multivariate path analysis was used to test the hypotheses. RESULTS: More preexisting family problems related to greater caregiver perceived negative impact of their child's HCT across family and caregiver functioning domains. Less time between diagnosis and HCT was associated with greater caregiver personal strain, particularly for those with younger children undergoing HCT. Younger child age at HCT was also associated with a larger negative impact on family social functioning. CONCLUSIONS: Families with preexisting problems are the most at-risk for experiencing negative impacts related to their child's HCT. The timing of a child's HCT within their treatment course and the child's age during HCT may impact families' social functioning and caregiver adjustment. Screening families for preexisting family problems, particularly for families with young children or who are abruptly learning of their child's need for an HCT, may assist providers in identifying families who would benefit from earlier or more intensive psychosocial support.
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Adaptação Psicológica , Cuidadores/psicologia , Atenção à Saúde/normas , Família/psicologia , Neoplasias Hematológicas/psicologia , Transplante de Células-Tronco Hematopoéticas/psicologia , Estresse Psicológico/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Seguimentos , Neoplasias Hematológicas/terapia , Humanos , Lactente , Masculino , Prognóstico , Sistemas de Apoio Psicossocial , Qualidade de Vida , Fatores Socioeconômicos , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: To report a case of morning glory disc anomaly (MGDA) in a pediatric patient with prenatal Zika virus (ZIKV) exposure. CASE PRESENTATION: A 3-year-old male with prenatal exposure to ZIKV, confirmed by real-time polymerase chain reaction testing during the second trimester of pregnancy, was evaluated due to visual loss. Physical examination was remarkable for unilateral MGDA. Neuroimaging showed a base of skull encephalocele through the floor of the sella and callosal dysgenesis. CONCLUSIONS: This is the first report to suggest an association between prenatal ZIKV exposure and MGDA. Prenatal ZIKV exposure may be associated to a wider pathologic spectrum than previously reported.
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OBJECTIVE: Psychosocial intervention studies with parents often have difficulty with regard to participant recruitment, retention, and engagement. Prior to conducting a pilot test of the Electronic Surviving Cancer Competently Intervention Program (eSCCIP), a psychosocial eHealth intervention for parents of children with cancer, a qualitative study was designed to preemptively generate strategies to address potential difficulties in these domains. METHODS: Two focus groups and three semi-structured interviews were conducted with parents of children with cancer. Qualitative data were analyzed using the principles of thematic and content analysis. Themes were generated to describe results and inform the development of concrete recruitment, retention, and engagement strategies to be utilized in future intervention trials. RESULTS: Five themes emerged specific to recruitment, and three themes emerged related to retention and engagement. Parents highlighted a number of important potential recruitment, retention, and engagement strategies, including the importance of flexibility, ease of access and use, intervention timing, and pathways to follow-up care. Themes were linked to actionable recruitment, retention, and engagement strategies which can be utilized in future studies. CONCLUSION: Results from the current study will be utilized when designing future eSCCIP intervention trials and will also be of use to the broader field of psychosocial eHealth intervention research in pediatric psychology. This study also underscores the importance of working with parent stakeholders at all phases of study design and implementation.
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Neoplasias , Seleção de Pacientes , Telemedicina , Criança , Feminino , Grupos Focais , Humanos , Masculino , Neoplasias/terapia , Pais , Pesquisa QualitativaRESUMO
PURPOSE: Family psychosocial risk in pediatric oncology can be assessed using the Psychosocial Assessment Tool (PAT), a brief parent report screener based on the Pediatric Psychosocial Preventative Health Model (PPPHM; universal, targeted, and clinical). However, little is known about risk over the course of treatment and its association with medical and psychosocial healthcare utilization. METHODS: Primary caregivers of children with cancer participated in this prospective multisite investigation, completing the PAT at diagnosis (T1; n = 396) and 6 months later (T2; n = 304). Healthcare utilization data were extracted from electronic health records. RESULTS: The distribution of PPPHM risk levels at T1 and T2 was highly consistent for the samples. Two-thirds of families remained at the same level of risk, 18% decreased and 16% increased risk level. Risk was not related to sociodemographic or treatment variables. The PAT risk score correlated with psychosocial contacts over the 6-month period. CONCLUSIONS: Although the majority of families reported universal (low) risk on the PAT and were stable in their risk level over 6 months, reassessing risk is helpful in identifying those families who report higher level of risk during treatment than at diagnosis. PAT scores were related to psychosocial services that are provided to most but not all families and could be tailored more specifically to match risk and delivery of evidence-based care.
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Cuidadores/psicologia , Família/psicologia , Neoplasias/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Psicometria/estatística & dados numéricos , Estresse Psicológico , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Lactente , Masculino , Estudos Prospectivos , Inquéritos e Questionários , Adulto JovemRESUMO
INTRODUCCIÓN: Las complicaciones infecciosas como consecuencia del cáncer y como efectos secundarios del tratamiento, son una realidad latente que enfrentan los pacientes y cuidadores. La prevención de éstas dependerá, en gran medida, de los adecuados cuidados que se brinden, especialmente en el hogar. OBJETIVO: Evaluar el nivel de conocimiento del cuidador primario sobre las complicaciones infecciosas en el paciente pediátrico con cáncer del Hospital de Especialidades del Niño y la Mujer en la ciudad de Querétaro. METODOLOGÍA: Estudio cuantitativo de corte transversal y nivel descriptivo, se contó con una muestra por conveniencia de 60 cuidadores primarios de paciente pediátrico con cáncer. Se utilizó un instrumento elaborado por los autores,para estudiar el nivel de conocimiento del cuidador primario. El instrumento está integrado por cuatro indicadores de conocimiento en las áreas de: nutrición, higiene, medidas de prevención y conocimiento de infecciones. Fue validado por medio del Método Delphi y se midió la confiabilidad con la prueba estadística de mitades partidas de Guttman. RESULTADOS: El 65% de los cuidadores tienen un conocimiento regular.La variable de conocimiento de infección es la que se observa con mayor área de oportunidad al obtener una calificación deficiente. CONCLUSIÓN: Se encontraron áreas de oportunidad para mejorar el conocimiento, específicamente en las acciones a emprender para la prevención de las infecciones. Con una adecuada intervención educativa de enfermería se pueden mejorar los conocimientos adquiridos por los cuidadores y disminuir con esto la prevalencia de infecciones.
INTRODUCTION: Infectious complications as a consequence of cancer and as secondary effects of treatment, are a latent reality that patients and caregivers will have to face, since to a large extent, the prevention of these will depend on the adequate care provided, especially in the home. OBJECTIVE: To evaluate the level of knowledge of the primary caregiver about the infectious complications in the pediatric patient with cancer of the Hospital of Specialties of Children and Women in the city of Querétaro. METHODOLOGY: A cross-sectional, descriptive level quantitative study was carried out with a convenience sample of 60 primary caregivers of a pediatric patient with cancer, an instrument prepared by authors on purpose to study the level of knowledge of the primary caregiver, made up of four indicators of knowledge in the areas of: nutrition, hygiene, prevention measures and knowledge of infection data, the instrument was validated by means of the Delphi Method and reliability was measured with the Guttman split halves statistical test. RESULTS: 65% of the caregivers were with regular knowledge, the knowledge item of infection is the one that is observed with greater area of opportunity when obtaining a deficient qualification. CONCLUSION: areas of opportunity were found to improve knowledge, specifically in the actions to be undertaken for the prevention of infections, which with an adequate educational nursing intervention could improve knowledge.
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Humanos , Masculino , Feminino , Criança , Adulto , Conhecimentos, Atitudes e Prática em Saúde , Doenças Transmissíveis/complicações , Cuidadores/psicologia , Neoplasias/complicações , Neoplasias/psicologia , Controle de Doenças Transmissíveis , Higiene , Estudos Transversais , Inquéritos e Questionários , Fenômenos Fisiológicos da NutriçãoRESUMO
RESUMEN Fundamento: las enfermedades cerebrovasculares constituyen la tercera causa de muerte en el mundo y una de las principales responsables de discapacidad y minusvalía en el adulto. Objetivo: describir las principales características clínicas en fallecidos por enfermedad cerebrovascular en el Hospital General Universitario Dr. Gustavo Aldereguía Lima de Cienfuegos. Métodos: se realizó un estudio descriptivo, transversal. El universo estuvo conformado por 517 pacientes fallecidos con diagnóstico de enfermedad cerebrovascular en el período comprendido entre el 1 de enero 2014 y el 31 de diciembre 2016 en Hospital General Universitario Dr. Gustavo Aldereguía Lima de Cienfuegos. Se consideraron como variables: edad, sexo, tipo y forma de presentación de la enfermedad cerebrovascular focal, estadía hospitalaria, patologías asociadas y año de defunción. Se obtuvieron los resultados en frecuencias absolutas y porcientos. Resultados: el 31,1 % de los fallecidos se halló entre los 80-89 años. Predominó el sexo masculino en un 55,3 %. El ictus de tipo isquémico representó el 62,5 %, fue la forma aterotrombótica la más frecuente con un 31,9 %. El 2015 fue el año con mayor número de defunciones con 186. El 75,2 % de las muertes se registró en los primeros 7 días de estadía hospitalaria. La principal patología asociada fue la hipertensión arterial (34,6 %). Conclusiones: la mortalidad por enfermedad cerebrovascular se presentó principalmente en pacientes de edades avanzadas, varones e hipertensos. Predominó la etiología isquémica. La mayoría de los pacientes que fallecieron lo hicieron en la primera semana de estadía hospitalaria.
ABSTRACT Foundation: cerebrovascular diseases are the third cause of death in the world and one of the main causes of disability in the adult. Objective: to describe the main clinical characteristics of deceased patients due to cerebrovascular disease at the Dr. Gustavo Aldereguía Lima General Hospital in Cienfuegos. Methods: a descriptive, cross-sectional study was conducted between January 1, 2014 and December 31, 2016 in the General University Hospital Gustavo Aldereguía Lima de Cienfuegos. The universe consisted of 517 deceased patients with a diagnosis of cerebrovascular disease in the period and the variables considered were: age, sex, type and form of presentation of focal cerebrovascular disease, hospital stay, associated pathologies and year of death. The results were obtained in absolute and percent frequencies. Results: from the deceased 31.1 % of were between 80-89 years old. Male sex predominated in 55.3 %. Stroke of the ischemic type represented 62.5 %, the athero-thrombotic form was the most frequent with 31.9 %. The year 2015 had the highest number of deaths with 186. The first 7 days of hospital stay recorded 75.2 % of deaths. The main associated pathology was hypertension (34.6 %). Conclusions: mortality from cerebrovascular disease. Most patients who died did so in the first week of hospital stay.
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OBJECTIVE: Currently, no evidence-based psychosocial clinical care pathways (PCCP) exist to triage psychosocial risk levels and guide delivery of psychosocial care to youth receiving a hematopoietic stem cell transplantation (HCT) and their families. The purpose of this paper is to describe the use of qualitative research methodologies to develop PCCP in pediatric HCT consistent with the Standards for Psychosocial Care developed for children with cancer. METHODS: We previously used qualitative methodologies to interview parents to identify four principles to inform the development of PCCPs. Then in this study a focus group with parents and multidisciplinary clinicians was conducted to assess the acceptability of the PCCP, suggest modifications, and provide input on its use. RESULTS: The PCCP is six-step pathway, starting with a standardized screening assessment with the Psychosocial Assessment Tool (PAT-HCT) that identifies the family's specific care needs. The focus group data support overall assessment with the PAT-HCT and the care principles underlying this approach. CONCLUSIONS: This PCCP is a systemic multidisciplinary model for providing psychosocial care that is ready for the next stage of development and evaluation in clinical care.
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Procedimentos Clínicos , Transplante de Células-Tronco Hematopoéticas/psicologia , Neoplasias/terapia , Psico-Oncologia/métodos , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Grupos Focais , Humanos , Lactente , Masculino , Neoplasias/psicologia , Psicometria/métodos , Adulto JovemRESUMO
Family psychosocial risk screening is an important initial step in delivering evidence-based care in hematopoietic stem cell transplantation (HCT). Establishing an evidence-based screening approach that is acceptable, reliable, and valid is an essential step in psychosocial care delivery. This is a 3-institution multimethod study. In part 1, caregivers of children about to undergo HCT (nâ¯=â¯140) completed the Psychosocial Assessment Tool-Hematopoietic Cell Transplantation (PAT-HCT), a brief parent report screener adapted for HCT, and validating questionnaires. Families received feedback on their risks identified on the PAT-HCT. In part 2, 12 caregivers completed a semistructured interview about their perceptions of the PAT and the feedback process. The reliability and validity of the PAT-HCT total and subscale scores were tested using Kuder-Richardson-20 (KR-20) and Pearson correlations. Thematic content analysis was used to analyze the qualitative interview data. Internal consistency for the total score (KR-20â¯=â¯.88) and the Child Problems, Sibling Problems, Family Problems, and Stress Reactions subscales were strong (KR-20 >.70). Family Structure, Social Support, and Family Beliefs subscales were adequate (KR-20â¯=â¯.55 to .63). Moderate to strong correlations with the criteria measures provided validation for the total and subscale scores. Feedback was provided to 97.14% of the families who completed the PAT-HCT, and the mean rating of acceptability was >4.00 (on a 5-point scale). The qualitative data indicate that families appreciate the effort to provide screening and feedback. The PAT-HCT is a psychometrically sound screener for use in HCT. Feedback can be given to families. Both the screener and the feedback process are acceptable to caregivers.
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Cuidadores/psicologia , Família/psicologia , Transplante de Células-Tronco Hematopoéticas/psicologia , Neoplasias/psicologia , Estresse Psicológico/psicologia , Inquéritos e Questionários , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Neoplasias/terapia , PsicometriaRESUMO
Objective: eHealth interventions may facilitate the dissemination of evidence-based psychosocial interventions to families of children with chronic illnesses, including cancer. This article describes a four-phase, mixed-methods, user-centered approach to the design and evaluation of a novel psychosocial intervention for parents of children with cancer (Electronic Surviving Cancer Competently Intervention Program [eSCCIP]), adapted from an in-person intervention (Surviving Cancer Competently Intervention Program). Methods: Development of eSCCIP involved a multidisciplinary design team of content and eHealth experts. Iterative Think Aloud testing and beta testing with parents of children with cancer was also completed. Results: An intensive, user-centered development and evaluation process was utilized to develop an eHealth intervention for parents of children with cancer. Initial testers rated eSCCIP favorably on questionnaires evaluating user experience and perceptions, and provided positive feedback and suggestions for additional improvement through qualitative interviews. Conclusions: Initial results suggest that eSCCIP may be an acceptable, feasible, and usable intervention for parents of children with cancer. eSCCIP is now ready for a larger pilot evaluation of usability, feasibility, and impact on target outcomes, including the reduction of anxiety and PTSS and improvements in family functioning.
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Objective: Family psychosocial risk screening is an important initial step in delivering evidence-based care and in addressing health disparities. There is currently no validated measure of family psychosocial risk in Spanish. The Psychosocial Assessment Tool (PAT) is a brief parent report screener based on the trilevel Pediatric Preventative Psychosocial Risk Model (PPPHM; Universal, Targeted, and Clinical). The current article validates a Spanish version of the PAT (Version 3.0) in pediatric oncology. Method: Spanish-speaking Hispanic primary caregivers of 79 children newly diagnosed with cancer participated in this 4-institution multisite investigation, completing Spanish versions of the PAT and validation measures using REDCap. Results: Over 60% of the sample had a high school or lower level of education and they primarily identified as Hispanic in terms of acculturation. Internal consistency for the total score (KR20 = 0.76) and the Social Support, Child Problems, Sibling Problems, and Family Problems subscales was strong (KR20 = 0.69-0.79). Stress Reactions, Family Structure, and Family Beliefs subscales were lower (KR20 = 0.43-0.55). Moderate to strong correlations with the criteria measures provided validation for the total and subscale scores. Nearly two-thirds of the sample scored in the Targeted or Clinical range of the PPPHM. The PAT was successful in identifying clinical cases. Conclusions: The Spanish version of the PAT can be used with families of children newly diagnosed with cancer. Elevated psychosocial risks were found and warrant particular attention in providing psychosocial care attentive to the needs of Spanish-speaking families.