Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 99
Filtrar
Más filtros

Banco de datos
País/Región como asunto
Tipo del documento
Intervalo de año de publicación
1.
Prev Sci ; 2024 Jan 04.
Artículo en Inglés | MEDLINE | ID: mdl-38175459

RESUMEN

Systemic racism is pervasive in US society and disproportionately limits opportunities for education, work, and health for historically marginalized and minoritized racial and ethnic groups, making it an urgent issue of social justice. Because systemic racism is a social determinant of health prevalent across multiple social and institutional structures, it requires multilevel intervention approaches using effective designs and analytic methods to measure and evaluate outcomes. Racism is a fundamental cause of poor health outcomes, including mental health outcomes; thus, mental health services and programs that address racism and discrimination are key to promoting positive mental health of racial and ethnic minority youth. While multilevel interventions are well-suited for improving outcomes like youth mental health disparities, their evaluation poses unique methodological challenges, requiring specialized design and analytic approaches. There has been limited methodological guidance provided to researchers on how to test multilevel interventions using approaches that balance methodological rigor, practicality, and acceptability across stakeholder groups, especially within communities most affected by systemic racism. This paper addresses this gap by providing an example of how to rigorously evaluate a hypothetical, theoretically based, multilevel intervention promoting mental health equity in three US school systems using an anti-racist approach intervening at the macro- (i.e., school system), meso- (i.e., school), and micro- (i.e., family and student) levels to improve mental health in adolescents. We describe the design, sample size considerations, and analytic methods to comprehensively evaluate its effectiveness while exploring the extent to which the components interact synergistically to improve outcomes. The methodological approach proposed can be adapted to other multilevel interventions that include strategies addressing macro-, meso-, and micro-levels of influence.

2.
Crit Care Med ; 51(1): 13-24, 2023 01 01.
Artículo en Inglés | MEDLINE | ID: mdl-36326263

RESUMEN

OBJECTIVES: While palliative care needs are assumed to improve during ICU care, few empiric data exist on need trajectories or their impact on long-term outcomes. We aimed to describe trajectories of palliative care needs during ICU care and to determine if changes in needs over 1 week was associated with similar changes in psychological distress symptoms at 3 months. DESIGN: Prospective cohort study. SETTING: Six adult medical and surgical ICUs. PARTICIPANTS: Patients receiving mechanical ventilation for greater than or equal to 2 days and their family members. MEASUREMENTS AND MAIN RESULTS: The primary outcome was the 13-item Needs at the End-of-Life Screening Tool (NEST; total score range 0-130) completed by family members at baseline, 3, and 7 days. The Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7), and Post-Traumatic Stress Scale (PTSS) were completed at baseline and 3 months. General linear models were used to estimate differences in distress symptoms by change in need (NEST improvement ≥ 10 points or not). One-hundred fifty-nine family members participated (median age, 54.0 yr [interquartile range (IQR), 44.0-63.0 yr], 125 [78.6%] female, 54 [34.0%] African American). At 7 days, 53 (33%) a serious level of overall need and 35 (22%) ranked greater than or equal to 1 individual need at the highest severity level. NEST scores improved greater than or equal to 10 points in only 47 (30%). Median NEST scores were 22 (IQR, 12-40) at baseline and 19 (IQR, 9-37) at 7 days (change, -2.0; IQR, -11.0 to 5.0; p = 0.12). There were no differences in PHQ-9, GAD-7, or PTSS change scores by change in NEST score (all p > 0.15). CONCLUSIONS: Serious palliative care needs were common and persistent among families during ICU care. Improvement in needs was not associated with less psychological distress at 3 months. Serious needs may be commonly underrecognized in current practice.


Asunto(s)
Cuidados Paliativos , Distrés Psicológico , Adulto , Humanos , Femenino , Persona de Mediana Edad , Masculino , Estudios Prospectivos , Unidades de Cuidados Intensivos , Familia/psicología
3.
Pediatr Res ; 94(1): 172-177, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-36639518

RESUMEN

BACKGROUND: To analyze the relationship of child behavioral and communication disorders, and adverse family events, to later-in-life child health and cognitive function among youth born extremely preterm. METHODS: The study participants were 694 children enrolled in the Extremely Low Gestational Age Newborn Study. At ages 2 and 10, we assessed internalizing and externalizing behaviors, and at age 10, we assessed adverse life events within the family. Associations were evaluated between these child and family factors and positive child health at age 10 years, and global health and cognitive function at age 15 years. RESULTS: Lower T-scores for internalizing or externalizing behaviors at age 2 were associated with more positive health at age 10. The absence of internalizing behaviors at age 10 was associated with better global child health and better cognitive function at age 15. The absence of communication deficits at age 10 was associated with better cognitive function at age 15. The absence of parent job loss was associated with better global child health at age 15. CONCLUSION: Among individuals born extremely preterm, child health and cognitive outcomes might be improved by timely interventions to address child behavioral symptoms and the impact of adverse life events in the family. IMPACT: The absence of child behavioral and communication disorders, and adverse family events, were associated with more positive health, higher global health, and better cognitive function among youth born extremely preterm. Interventions to address behavioral disorders in early childhood, and to reduce the impact of adverse life events on the family, might promote improved health and developmental outcomes for adolescents born extremely preterm.


Asunto(s)
Trastornos de la Conducta Infantil , Recien Nacido Extremadamente Prematuro , Recién Nacido , Femenino , Embarazo , Humanos , Niño , Preescolar , Adolescente , Edad Gestacional , Parto , Conducta Infantil
4.
J Pediatr Nurs ; 73: e93-e99, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37516648

RESUMEN

BACKGROUND & PURPOSE: Relatively little is known about the parents' challenges and coping in making decisions for children with complex, life-threatening conditions. Therefore, this secondary analysis aimed to explore the challenges and coping between parents while navigating their decision-making by focusing on their interpersonal relationship. DESIGN & METHOD: Data from 38 interviews with parent couples of 20 infants diagnosed with congenital heart disease or receiving hematopoietic stem cell transplantation (HSCT) were analyzed using a conventional content analysis. RESULTS: Findings revealed the key challenges between parents in decision-making and how they cope with the challenges together as represented by two main themes of "Challenges faced by parents in making decisions together" and "Parents' collaborative coping with the challenges of making shared decisions." DISCUSSION: The majority of challenges that parents face in making decisions were closely related to the nature of the children's complex and life-threatening illness and uncertainty. However, supportive partner helped coping and decision-making, indicating the vital role of spouses in making decisions for their ill child. IMPLICATIONS: Assessing parents' marital relationship, providing enough information to ensure that both parents clearly understand the information, and encouraging parents to openly communicate with each other are recommended. Educating healthcare providers to support parents to partner together in shared decision-making is also required. Last, legislating laws that mandate providing psychological counseling services and developments of community-based interventions to support parental relationship would improve parents' shared decision-making. Further research on enhancing parental relationships in the context of a child's illness is required.


Asunto(s)
Toma de Decisiones , Padres , Niño , Lactante , Humanos , Padres/psicología , Habilidades de Afrontamiento , Investigación Cualitativa
5.
JAAPA ; 36(1): 32-40, 2023 Jan 01.
Artículo en Inglés | MEDLINE | ID: mdl-36484712

RESUMEN

ABSTRACT: Efforts to improve access to high-quality, efficient primary care have highlighted the need for team-based care. Most primary care teams are designed to maintain continuity of care between patients and primary care providers (PCPs), because continuity of care can improve some patient outcomes. However, PCPs are interdependent because they care for, or share, patients. PCP interdependence, and its association with continuity of care, is not well described. This study describes a measure of PCP interdependence. We also evaluate the association between patient and panel characteristics, including PCP interdependence. Our results found that the extent of interdependence between PCPs in the same clinic varies widely. A range of patient and panel characteristics affect continuity of care, including patient complexity and PCP interdependence. These results suggest that continuity of care for complex patients is sensitive to panel characteristics, including PCP interdependence and panel size. This information can be used by primary care organizations for evidence-based team design.


Asunto(s)
Continuidad de la Atención al Paciente , Atención Primaria de Salud , Humanos , Atención Primaria de Salud/métodos , Calidad de la Atención de Salud , Instituciones de Atención Ambulatoria
6.
Ann Behav Med ; 56(9): 946-958, 2022 08 30.
Artículo en Inglés | MEDLINE | ID: mdl-35195674

RESUMEN

BACKGROUND: Metabolic syndrome is known as a lifestyle disease that results from poor health behaviors. Yet, little is known about the subgroups of midlife women with distinct health behavior profiles who are at risk for developing metabolic syndrome. PURPOSE: This study aims to identify latent subgroups of midlife women with distinct health behavior profiles (physical activity, alcohol, diet, and smoking), to describe the characteristics of latent subgroups, and to examine the association between latent class membership and future development of metabolic syndrome. METHOD: This is a secondary data analysis using baseline and follow-up data from years 1, 3, 5, and 7 (N = 3,100) from the Study of Women's Health Across the Nation (SWAN). Latent class analysis was used to identify latent subgroups of midlife women based on their distinct health behavior profiles. Bivariate and multiple logistic regression was conducted to examine the individual characteristics of each latent subgroup and its association with the future development of metabolic syndrome. RESULT: A 4-class model was selected: Class 1 (Healthy), Class 2 (Healthy except alcohol), Class 3 (Healthy except diet), and Class 4 (Unhealthy). Significant differences in individual characteristics were found among the four latent classes (p < .001). The regression analysis found that Class 2 had lower odds of developing metabolic syndrome at all future visits with statistical significance reached at visit 3 (p < .05) while Class 4 had higher odds of developing metabolic syndrome at all visits except visit 3 when both compared to Class 1. CONCLUSION: Clinicians should use the study findings to offer personalized approach to promote healthy behaviors and to guide future development of health promotion programs for midlife women.


Asunto(s)
Síndrome Metabólico , Femenino , Conductas Relacionadas con la Salud , Humanos , Análisis de Clases Latentes , Estilo de Vida , Síndrome Metabólico/epidemiología , Salud de la Mujer
7.
Nurs Res ; 71(4): E28-E38, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35759720

RESUMEN

BACKGROUND: Midlife perimenopausal and postmenopausal women with metabolic syndrome experience multiple symptoms concurrently. OBJECTIVE: The study objectives were to examine the relationship among symptoms through network visualization and identify and compare symptom clusters and key symptoms across symptom occurrence and symptom severity dimensions in midlife perimenopausal and postmenopausal women with and without metabolic syndrome. METHODS: Cross-sectional data from the Study of Women's Health Across the Nation (Visit 5) were used for analysis. A machine-learning-based network analysis and the Walktrap algorithm were used to fulfill the study objectives. RESULTS: The number and types of symptom clusters differed between the groups. Midlife perimenopausal and postmenopausal women with metabolic syndrome experienced the psychological/somatic/genital cluster (key symptom: frequent mood change), the sleep/urinary cluster (sleep disturbance), and the vasomotor cluster (cold sweat) in the symptom occurrence dimension and the psychological/somatic/sexual cluster (anxiety), the sleep/urinary cluster (sleep disturbance), and the vasomotor/genital cluster (night sweat) in the symptom severity dimension. In contrast, midlife perimenopausal and postmenopausal women without metabolic syndrome experienced the psychological cluster (anxiety), the sleep/somatic/genitourinary cluster (sleep disturbance), and the vasomotor cluster (night sweat) in the symptom occurrence dimension and the psychological/somatic cluster (anxiety), the sleep/urinary cluster (sleep disturbance), the vasomotor cluster (night sweat), and the sexual/genital cluster (vaginal dryness) in the symptom severity dimension. DISCUSSION: The study findings may serve as a knowledge basis for effective assessment and management of symptom clusters and key symptoms in clinical settings and provide directions for future development of targeted symptom management interventions.


Asunto(s)
Síndrome Metabólico , Trastornos del Sueño-Vigilia , Estudios Transversales , Femenino , Sofocos/epidemiología , Sofocos/psicología , Humanos , Síndrome Metabólico/complicaciones , Perimenopausia/psicología , Posmenopausia/psicología
8.
Res Nurs Health ; 45(3): 314-326, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-35141915

RESUMEN

Raising a child with a neurodevelopmental disorder has often been associated with poorer quality of life and family functioning. Yet, many family members describe themselves as resilient and capable of achieving well-being. Whether and how this occurs in racial/ethnic minority families remains largely unexplored. The aim of this study was to systematically synthesize qualitative studies exploring how families from a racial/ethnic minority background in the United States (1) experienced well-being and (2) responded to challenges they faced while caring for a child diagnosed with three selected neurodevelopmental disorders: autism spectrum disorder, attention deficit hyperactivity disorder, and intellectual disability. A systematic literature search was conducted in November and December of 2019 and updated in October 2021. Three themes were developed based on included studies: "moving toward well-being as a caregiver," "family and culture: impact on well-being," and "community and culture: impact on well-being." The findings in this review indicate that to develop well-being, racial/ethnic minority families faced additional barriers, including racial/ethnic discrimination and stigma within their family and cultural community. The knowledge generated has the potential to identify areas of intervention to promote resilience and well-being in racial/ethnic minority families raising a child with a neurodevelopmental disorder.


Asunto(s)
Trastorno del Espectro Autista , Trastornos del Neurodesarrollo , Niño , Minorías Étnicas y Raciales , Etnicidad , Familia , Humanos , Grupos Minoritarios , Calidad de Vida , Estados Unidos
9.
J Pediatr Nurs ; 66: 36-43, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35623186

RESUMEN

PURPOSE: The purpose of this qualitative descriptive study was to explore primary caregivers' perception of how social-environmental characteristics, and their own role as primary caregivers, affected their extremely preterm adolescent's well-being. METHODS: Participants were 20 mothers who identified as the primary caregiver of an adolescent born extremely prematurely (<28 weeks gestation) enrolled in the ELGAN cohort study. Data was collected through individual interviews and was analyzed using inductive content analysis. RESULTS: A total of three themes, and five subthemes, were identified. The two main themes were "familial impact to health and well-being," and "contributors and barriers at the community level." This study described specific familial and community contributors to child and caregiver well-being, including: the importance of advocacy, participating in community activities, and social and familial support networks. CONCLUSIONS: Overall, while there are individual level characteristics that contribute to well-being, a support structure at the family and community level is essential to children born extremely prematurely, and their mother's, well-being. PRACTICE IMPLICATIONS: Healthcare providers caring for these families should understand that not only are extremely preterm youth affected by prematurity, but caregivers are also deeply impacted. Therefore, it is essential that maternal and family care is emphasized by nurses and healthcare providers.


Asunto(s)
Cuidadores , Recien Nacido Extremadamente Prematuro , Adolescente , Niño , Estudios de Cohortes , Femenino , Humanos , Recién Nacido , Madres , Percepción
10.
JAAPA ; 35(2): 1-10, 2022 Feb 01.
Artículo en Inglés | MEDLINE | ID: mdl-34985006

RESUMEN

OBJECTIVE: Increased demand for quality primary care and value-based payment has prompted interest in implementing primary care teams. Evidence-based recommendations for implementing teams will be critical to successful PA participation. This study sought to describe how primary care providers (PCPs) define team membership boundaries and coordinate tasks. METHODS: This mixed-methods study included 28 PCPs from a primary care network. We analyzed survey data using descriptive statistics and interview data using content analysis. RESULTS: Ninety-six percent of PCPs reported team membership. Team models fell into one of five categories. The predominant coordination mechanism differed by whether coordination was required in a visit or between visits. CONCLUSIONS: Team-based primary care is a strategy for improving access to quality primary care. Most PCPs define team membership based on within-visit task interdependencies. Our findings suggest that team-based interventions can focus on clarifying team membership, increasing interaction between clinicians, and enhancing the electronic health record to facilitate between-visit coordination.


Asunto(s)
Registros Electrónicos de Salud , Atención Primaria de Salud , Personal de Salud , Humanos , Grupo de Atención al Paciente , Calidad de la Atención de Salud , Encuestas y Cuestionarios
11.
Support Care Cancer ; 29(8): 4461-4471, 2021 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-33454824

RESUMEN

PURPOSE: Identify subgroups of gastrointestinal (GI) cancer patients with distinct multiple co-occurring symptom profiles and evaluate for differences among these subgroups in demographic and clinical characteristics and quality of life (QOL) outcomes. METHODS: Patients with GI cancers (n = 399) completed the Memorial Symptom Assessment Scale (MSAS) that was used to assess for multiple co-occurring symptoms. Latent class analysis (LCA) was used to identify subgroups of patients with distinct symptom profiles using symptom occurrence ratings. Differences in demographic and clinical characteristics and QOL outcomes among the subgroups were evaluated using parametric and nonparametric tests. RESULTS: All Low (36.6%), Moderate (49.4%), and All High (14.0%) classes were identified. Compared to the All Low class, patients in the other two classes were significantly younger and were more likely to report depression and back pain. Compared to the other two classes, patients in the All High class had fewer years of education and a higher number of comorbidities. Significant differences were found among the three classes for comorbidity burden and total number of MSAS symptoms (i.e., All Low < Moderate < All High), as well as for performance status (i.e., All Low > Moderate > All High). A higher symptom burden was associated with poorer QOL outcomes. CONCLUSIONS: The first study to identify subgroups of patients with GI cancers based on distinct symptom profiles. LCA allowed for the identification of risk factors associated with a higher symptom burden. Clinicians can use this information to identify high-risk patients and develop personalized symptom management interventions.


Asunto(s)
Neoplasias Gastrointestinales/tratamiento farmacológico , Calidad de Vida/psicología , Comorbilidad , Estudios Transversales , Femenino , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Factores de Riesgo
12.
J Pediatr Nurs ; 61: 67-74, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33780717

RESUMEN

PURPOSE: Children born with Complex Life-Threatening Conditions (CLTCs) often require complex and specialized services. Parents of children with CLTCs balance the role of caregiver with other responsibilities of employment, education, relationships, and self-care. The purpose of this paper is to describe the challenges for parents serving as caregivers of children with CLTCs and their intersection with health care provider expectations through utilization and adaptation of the role theory framework. DESIGN/METHODS: We employed a qualitative descriptive design, secondary analysis of a longitudinal study on parent and provider decision making for children with CLTC. There were 218 interviews from sixty-one parents of 35 infants with prematurity, bone marrow transplant, and/or complex cardiac disease, followed for one year unless death occurred. Content analysis and thematic generation were performed capturing the various parental roles embedded within provider expectations of informal parental caregiving. RESULTS: Results showed that parents of children with CLTCs serve multidimensional roles, including that of informal nurse and care coordinator, while maintaining additional personal roles as parent and family provider. Parents experienced challenges as caregivers that were shaped by perceived expectations of health care providers as well as lack of support, often leading to role strain, conflict, overload, and sometimes exit. CONCLUSIONS: Parents of children with CLTCs experience both common and unique challenges inn balancing multiple roles as an informal caregiver. Despite utilizing positive coping mechanisms, their status as parent caregiver carries significant risk for role strain and overload. We recommend the implementation of strategies for increasing parental support and family-centered care.


Asunto(s)
Cuidadores , Padres , Adaptación Psicológica , Niño , Humanos , Lactante , Estudios Longitudinales
13.
J Pediatr Nurs ; 59: 10-18, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33406441

RESUMEN

PURPOSE: This study explores human flourishing (HF) in adolescents with cancer (AC) as witnessed by their health care providers, and it develops a list of critical attributes associated with HF to describe the positive outcomes witnessed. DESIGN AND METHODS: Our study used a qualitative descriptive design incorporating data from an open-ended electronic survey and semi-structured individual interviews with 17 pediatric oncology health care providers. RESULTS: We found 3 major themes (positive forward motion, connectedness, and self-character) representing 11 critical attributes of human flourishing in AC: (1) initiative and enterprise, (2) positivity and evocativeness, (3) tranquility and maturity, (4) perseverance and tenacity, (5) compassion and empathy, (6) social engagement and connection, (7) wisdom and translation into life, (8) supportive background, (9) self-awareness and self-agency, (10) transcendence and full potential, and (11) meaning-making. CONCLUSIONS: Understanding the concept of HF as it applies to the needs of AC is a step toward establishing it as a comprehensive health care goal and toward developing care provider guidelines for its promotion. PRACTICE IMPLICATIONS: Given the attributes of HF in AC, nurses can consider HF as an ultimate nursing care outcome and should focus on goals of care beyond disease treatment and symptoms mitigation when providing care for this population. Holistic, individualized assessment, timely care during each phase of treatment, and developmentally tailored intervention should be provided.


Asunto(s)
Personal de Salud , Neoplasias , Adolescente , Niño , Empatía , Humanos , Oncología Médica , Neoplasias/terapia , Investigación Cualitativa
14.
Nurs Res ; 69(6): 436-447, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32969948

RESUMEN

BACKGROUND: Much remains unknown about the longitudinal health and well-being of individuals with intellectual disability (ID); thus, new methods to identify those with ID within nationally representative population studies are critical for harnessing these data sets to generate new knowledge. OBJECTIVE: Our objective was to describe the development of a new method for identifying individuals with ID within large, population-level studies not targeted on ID. METHODS: We used a secondary analysis of the de-identified, restricted-use National Longitudinal Study of Adolescent to Adult Health (Add Health) database representing 20,745 adolescents to develop a method for identifying individuals who meet the criteria of ID. The three criteria of ID (intellectual functioning, adaptive functioning, and disability originating during the developmental period) were derived from the definitions of ID used by the American Psychiatric Association and the American Association on Intellectual and Developmental Disabilities. The ID Indicator was developed from the variables indicative of intellectual and adaptive functioning limitations included in the Add Health database from Waves I to III. RESULTS: This method identified 441 adolescents who met criteria of ID and had sampling weights. At Wave I, the mean age of this subsample of adolescents with ID was 16.1 years. About half of the adolescents were male and from minority racial groups. Their parents were predominately female, were married, had less than a high school education, and had a median age of 41.62 years. The adolescents' mean maximum abridged Peabody Picture Vocabulary Test standardized score was 69.6, and all demonstrated at least one adaptive functioning limitation. DISCUSSION: This study demonstrates the development of a data-driven method to identify individuals with ID using commonly available data elements in nationally representative population data sets. By utilizing this method, researchers can leverage existing rich data sets holding potential for answering research questions, guiding policy, and informing interventions to improve the health of the ID population.


Asunto(s)
Discapacidad Intelectual/epidemiología , Salud Mental/estadística & datos numéricos , Personas con Discapacidades Mentales/estadística & datos numéricos , Adaptación Psicológica , Adolescente , Adulto , Atención/fisiología , Cognición/fisiología , Femenino , Humanos , Discapacidad Intelectual/psicología , Estudios Longitudinales , Masculino , Trastornos Mentales/epidemiología , Personas con Discapacidades Mentales/psicología , Factores de Riesgo
15.
J Pediatr Nurs ; 53: 41-51, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32438191

RESUMEN

PURPOSE: The purpose of this study was to chronicle the adaptive challenges and adaptive work, including emerging leadership behaviors, recounted over time by the parents of very young children diagnosed before birth with life threatening conditions. DESIGN AND METHODS: A descriptive, follow-up study design was used for the current study. Following the original grounded dimensional analysis study completed in 2012, the corpus for this analysis was collected in 2014. In-depth, audio-recorded interviews were conducted with 15 families (8 couples, 7 mothers). The 15 children, born with cardiac, abdominal, and cerebrospinal anomalies, were 14 - 37 months or deceased at follow-up. A directed content analysis of transcribed verbatim interviews was structured by the Adaptive Leadership framework. RESULTS: Parents described behaviors that indicated a non-linear development towards adaptive leadership as they accomplished the adaptive work within intra- and interpersonal domains that was necessary to address challenges over time. Not all parents described abilities and/or a willingness to mobilize others to do adaptive work, suggesting that adaptive leadership remained an unrealized potential. CONCLUSIONS: Understood as a complex adaptive system, parents of medically at-risk children hold potential for development towards adaptive leadership and collaborative partnership within the family and with healthcare providers. PRACTICE IMPLICATIONS: Due to improved survival rates, parents face ongoing challenges related to their children's unpredictable and often chronic health needs. Study findings illustrate parents' adaptive work and leadership behaviors, which can inform nursing assessments, as well as the type and timing for intervention.


Asunto(s)
Liderazgo , Padres , Niño , Preescolar , Femenino , Estudios de Seguimiento , Humanos , Madres , Parto , Embarazo
16.
Pediatr Blood Cancer ; 66(1): e27463, 2019 01.
Artículo en Inglés | MEDLINE | ID: mdl-30251318

RESUMEN

BACKGROUND: Sickle cell disease (SCD) is a chronic blood disorder in which mortality has increased for adolescents and young adults (AYA). PROCEDURE: A longitudinal analysis of medical records was conducted to describe the clinical course among AYAs (ages 12-27 years) during transition to adult care. Measures included sociodemographic, complications, SCD severity (modified pediatric SCD severity index), comorbidities, and transfer. Group-based trajectory modeling (GBTM) to identify subgroups with distinct severity trajectories and chi-square and unpaired Student t test to explore subgroup differences were used. RESULTS: Overall, 339 AYAs (97% black, 56% male, 69% hemoglobin SS) had 10 848 clinic, 3840 hospital, and 3152 emergency department visits. Complications included vaso-occlusive crises (80%) and acute chest syndrome (41%). Comorbidities included depression (19%) and anxiety (14%). Most AYAs transferred to adult care (n = 220) at 19 years. Fourteen AYAs died, 10 within seven years from transfer. GBTM identified both stable and increasing severity trajectory groups: stable-low (n = 31, 23%), stable-medium (n = 61, 46%), stable-high (n = 6, 4.5%), low-increasing (n = 13, 10%), and medium-increasing (n = 22, 17%). AYAs with increasing severity (25%) were older, lived closer to the clinic, and had higher risk for SCD complications and comorbidities. They had fewer pediatric clinic visits; however, they were more likely to transfer and remain longer in adult SCD care. CONCLUSIONS: Whereas most AYAs had stable severity, nearly a quarter had increasing severity, over time. AYAs with increasing severity had more complications, were more likely to transfer to adult care, and demonstrated higher and longer adult SCD care utilization compared with AYAs with stable severity.


Asunto(s)
Anemia de Células Falciformes/complicaciones , Anemia de Células Falciformes/epidemiología , Servicio de Urgencia en Hospital/estadística & datos numéricos , Índice de Severidad de la Enfermedad , Transición a la Atención de Adultos/estadística & datos numéricos , Adolescente , Adulto , Anemia de Células Falciformes/terapia , Niño , Comorbilidad , Femenino , Estudios de Seguimiento , Humanos , Estudios Longitudinales , Masculino , Pronóstico , Estudios Retrospectivos , Tasa de Supervivencia , Estados Unidos/epidemiología , Adulto Joven
18.
J Pediatr Nurs ; 47: 148-158, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31152999

RESUMEN

PURPOSE: This study explored the health care transition (HCT) experiences of parents of adolescents and young adults (AYAs) with intellectual disability (ID), 18-33 years of age, including barriers and facilitators to the AYA's transition to adulthood within and between the medical, educational, community, and vocational systems. DESIGN AND METHODS: A qualitative descriptive design with semi-structured individual interviews with 16 parent participants was used. Purposive sampling of parents was utilized with variation on race/ethnicity and AYA age, stage in transition, and condition. This study was conducted through a major medical center in the southeast United States. Content analysis was utilized. RESULTS: Three overarching themes represented the factors and essence of supporting AYAs with ID transition to adulthood. Inefficient and siloed systems illuminated barriers families are commonly experiencing within and between the medical, educational, community, and vocational systems. 'Left out here floundering' in adulthood, described the continued inadequacy of resources within each of these systems and parent's having to find available resources themselves. Hope despite uncertainty, included the perceived costs and benefits of their AYA's disability and the value of parent peer support in providing key knowledge of resources, strategies, and perspectives. CONCLUSIONS: Our findings illuminate the need for improved infrastructure to provide effective HCT and partnerships to help integrate HCT support within other life course systems. Results support the rationale for non-categorical HCT-focused approach. PRACTICE IMPLICATIONS: A parent peer coach-facilitated intervention offers promise for bridging the gap between systems and meeting family needs.


Asunto(s)
Discapacidad Intelectual , Padres/psicología , Transición a la Atención de Adultos , Adolescente , Adulto , Femenino , Humanos , Entrevistas como Asunto , Masculino , Investigación Cualitativa , Estados Unidos , Adulto Joven
19.
J Adolesc Res ; 34(5): 528-562, 2019 Sep 01.
Artículo en Inglés | MEDLINE | ID: mdl-34054207

RESUMEN

Sex communication interventions facilitate positive sexual health outcomes with heterosexual adolescents. The same has yet to be established for male youth with same-sex attractions, behaviors, and identities. Our study describes the experiences of gay, bisexual and queer-identifying adolescent males with parent-child sex communication. We conducted 30 in-depth semi-structured interviews with a diverse group of 15 to 20 year-old gay, bisexual, and queer (GBQ) males. Interview transcripts were coded and themes were identified using thematic and content analysis. Narratives revealed that sex communication with parents occurs rarely, is heteronormative in content prior to adolescent males' disclosure as GBQ, and after disclosure is reactionary and based on stereotypes that associate this population with negative health outcomes. Parents were rated poorly as sex educators by adolescent males and the findings are mixed regarding perception of parents' knowledge about GBQ-specific information. Parents and healthcare providers were identified as preferred sources of sex information by GBQ adolescent males. Sex communication with parents throughout adolescence that excludes GBQ males' same-sex concerns is a missed opportunity for targeted sexual risk reduction. There are multiple ways healthcare providers can assist parents to plan age-appropriate, sexuality-inclusive, home-based discussions about sex for this group.

20.
Nurs Outlook ; 67(4): 293-301, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31248630

RESUMEN

Precision health can provide an avenue to bridge and integrate ways of knowing for research and practice. Nurse scientists have a long-standing interest in using multiple sources of information to address research questions of significance to the profession and discipline of nursing, which can lead to much needed contributions to precision health care. In this paper, nursing scientists discuss emerging research methods including omics, electronic sensors, and geospatial data, and mixed methods that further develop nursing science and contribute to precision health initiatives. The authors provide exemplars of the types of knowledge and ways of knowing that, using these and other advanced data and analytic strategies, may advance precision health within the context of nursing science.


Asunto(s)
Recolección de Datos/métodos , Conocimientos, Actitudes y Práctica en Salud , Rol de la Enfermera , Investigación en Enfermería/organización & administración , Medicina de Precisión/métodos , Medicina de Precisión/enfermería , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Proyectos de Investigación , Estados Unidos
SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA