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1.
J Pediatr Psychol ; 43(7): 779-788, 2018 08 01.
Artículo en Inglés | MEDLINE | ID: mdl-29562253

RESUMEN

Objectives: Sickle cell disease (SCD) predominately affects Black Americans. This is the first study of its kind to describe the racial bias experiences of youth with SCD and their reactions to these experiences. Methods: Participants were 20 youth with SCD (ages 13-21 years) who were asked to describe any racial bias events they experienced, as recorded on the Perception of Racism in Children and Youth measure (PRaCY). Interviews were recorded, transcribed, and analyzed by two independent raters using a conventional content analysis approach. Results: All participants reported at least one incident of racial bias. Content analysis of racial bias events (n = 104) yielded 4 categories and 12 subcategories as follows: Perpetrator (Peers, Authority Figures, and General Public), Type of Racial Bias (Explicit, Implicit), Behavioral Reaction (Approach, Avoidant), and Emotional Response (Dysphoria, Anger, Unconcerned, Inferior, Anxious). Discussion: This study provides a description of racial bias experiences within community and medical settings and highlights the need for further evaluation of the impact of racial bias among youth with SCD.


Asunto(s)
Anemia de Células Falciformes/psicología , Negro o Afroamericano/psicología , Racismo/psicología , Adolescente , Adulto , Negro o Afroamericano/estadística & datos numéricos , Actitud Frente a la Salud , Femenino , Humanos , Entrevistas como Asunto , Masculino , New England , Racismo/estadística & datos numéricos , Población Urbana , Adulto Joven
3.
J Pediatr Oncol Nurs ; 34(6): 427-434, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-28669252

RESUMEN

OBJECTIVE: This study examined the role and importance of hopefulness for parents of children with cancer, how hope relates to parents' experience with the diagnosis, and the influence nurses and other health care professionals have on parents' hope. METHOD: Using an interview format, 50 parents of children diagnosed with cancer were given the Reaction to Diagnosis Interview, and asked 5 open-ended questions about hope. Answers were analyzed using content analysis. Parents' adaptation to their child's diagnosis was compared with answers to the hope questions. RESULTS: Parents defined hope as a knowing, belief, or wish regarding their child's health. They emphasized the importance of hope over the course of their child's treatment. Staff increased parents' hope by providing care to children and families, educating parents, and by connecting with and providing a positive outlook for families. Most parents felt there was nothing staff did to decrease their hope. CONCLUSION: Understanding parents' experiences validates the quality care and connections we make with children and families, and encourages us to consider the effects of our interactions. This underscores the importance of education and support as a means of instilling hope in parents, who are valued, critical members of their child's health care team.


Asunto(s)
Actitud Frente a la Salud , Personal de Salud/psicología , Esperanza , Neoplasias/psicología , Relaciones Enfermero-Paciente , Padres/psicología , Adulto , Niño , Preescolar , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Persona de Mediana Edad
4.
J Dev Behav Pediatr ; 38(2): 129-134, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-28059954

RESUMEN

OBJECTIVE: Little is known about the role of perceived racial bias and health-related stigma on the health of youth with sickle cell disease (SCD). The purpose of this study was to investigate the occurrence of perceived racial bias and health-related stigma among youth with SCD and its relationship with psychological and physical well-being. METHODS: Twenty-eight youth with SCD, ages 13 to 21, were recruited from outpatient and inpatient settings at an urban children's medical center. Participants completed measures of perceived racial bias, perceived health-related stigma, depression, quality of life, and pain burden. RESULTS: Most participants endorsed occurrences of racial bias and health-related stigma. The findings indicate that greater perceived racial bias was associated with greater pain burden, and greater perceived health-related stigma was related to lower quality of life. CONCLUSION: Perceived racial bias and health-related stigma may be important to consider for future research investigating the psychological and physiological features of SCD for youth.


Asunto(s)
Anemia de Células Falciformes/psicología , Dolor/psicología , Calidad de Vida/psicología , Racismo/psicología , Estigma Social , Adolescente , Adulto , Femenino , Humanos , Masculino , Adulto Joven
5.
J Pediatr Oncol Nurs ; 32(4): 253-60, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-25556107

RESUMEN

OBJECTIVES: This study assessed the experience of parents who have a child diagnosed with cancer and whether parental hope, family functioning, and perceptions of care distinguish those parents who have adapted to the diagnosis versus those who have not adapted. METHODS: Fifty parents completed an interview about the diagnosis experience and questionnaires about hopefulness, family functioning, and family-centered care. RESULTS: A majority of parents had come to terms with the diagnosis; however, a subset indicated feeling emotionally disengaged from the experience and having persistent thoughts about why this had happened to them. In addition, parents who were having a difficult time adapting reported lower hopefulness and felt that they received more information about support services from medical providers compared with parents who had come to terms with the diagnosis. CONCLUSIONS: By recognizing families who continue to struggle with the diagnosis, nurses may be better equipped to approach families and evaluate their needs, including coping and adaptation. Asking parents about their experience can also lead to more appropriate and timely care and referral and allows nurses to provide care that engenders hopefulness.


Asunto(s)
Adaptación Psicológica , Emociones , Neoplasias/psicología , Padres/psicología , Apoyo Social , Adolescente , Adulto , Actitud Frente a la Muerte , Actitud Frente a la Salud , Niño , Preescolar , Femenino , Humanos , Lactante , Masculino , Persona de Mediana Edad , New England , Estrés Psicológico , Encuestas y Cuestionarios
6.
West J Emerg Med ; 16(7): 974-82, 2015 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-26759641

RESUMEN

INTRODUCTION: Acute appendicitis in children is a clinical diagnosis, which often requires preoperative confirmation with either ultrasound (US) or computed tomography (CT) studies. CTs expose children to radiation, which may increase the lifetime risk of developing malignancy. US in the pediatric population with appropriate clinical follow up and serial exam may be an effective diagnostic modality for many children without incurring the risk of radiation. The objective of the study was to compare the rate of appendiceal rupture and negative appendectomies between children with and without abdominal CTs; and to evaluate the same outcomes for children with and without USs to determine if there were any associations between imaging modalities and outcomes. METHODS: We conducted a retrospective chart review including emergency department (ED) and inpatient records from 1/1/2009-2/31/2010 and included patients with suspected acute appendicitis. RESULTS: 1,493 children, aged less than one year to 20 years, were identified in the ED with suspected appendicitis. These patients presented with abdominal pain who had either a surgical consult or an abdominal imaging study to evaluate for appendicitis, or were transferred from an outside hospital or primary care physician office with the stated suspicion of acute appendicitis. Of these patients, 739 were sent home following evaluation in the ED and did not return within the subsequent two weeks and were therefore presumed not to have appendicitis. A total of 754 were admitted and form the study population, of which 20% received a CT, 53% US, and 8% received both. Of these 57%, 95% CI [53.5,60.5] had pathology-proven appendicitis. Appendicitis rates were similar for children with a CT (57%, 95% CI [49.6,64.4]) compared to those without (57%, 95% CI [52.9,61.0]). Children with perforation were similar between those with a CT (18%, 95% CI [12.3,23.7]) and those without (13%, 95% CI [10.3,15.7]). The proportion of children with a negative appendectomy was similar in both groups: CT (7%, 95% CI [2.1,11.9]), US (8%, 95% CI [4.7,11.3]) and neither (12%, 95% CI [5.9,18.1]). CONCLUSION: In this uncontrolled study, the accuracy of preoperative diagnosis of appendicitis and the incidence of pathology-proven perforation appendix were similar for children with suspected acute appendicitis whether they had CT, US or neither imaging, in conjunction with surgical consult. The imaging modality of CT was not associated with better outcomes for children presenting to the ED with suspected appendicitis.


Asunto(s)
Apendicitis/diagnóstico por imagen , Enfermedad Aguda , Adolescente , Distribución por Edad , Apendicectomía/estadística & datos numéricos , Niño , Preescolar , Diagnóstico Precoz , Servicio de Urgencia en Hospital/estadística & datos numéricos , Tratamiento de Urgencia/estadística & datos numéricos , Femenino , Hospitalización/estadística & datos numéricos , Humanos , Lactante , Recién Nacido , Masculino , Cuidados Preoperatorios/normas , Tomografía Computarizada por Rayos X , Resultado del Tratamiento , Salud Urbana/estadística & datos numéricos , Adulto Joven
7.
J Pediatr Nurs ; 29(1): 58-64, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-23973569

RESUMEN

BACKGROUND: This study assessed the experience of parents who have a child diagnosed with chronic illness and whether children's narratives mirror these experiences. METHOD: A total of 66 parents completed assessments about adaptation and family functioning. Children with type 1 diabetes or asthma participated in a story-stem narrative task. RESULTS: Forty-one percent of parents were unresolved about their child's diagnosis, regardless of time since diagnosis. Unresolved parents reported lower family functioning, and children in these families had more family conflict themes. CONCLUSIONS: Parental/Child narratives may provide unique insights into family adjustment. Future work may consider interventions related to family communication and expression of emotion.


Asunto(s)
Enfermedad Crónica/psicología , Salud de la Familia , Narración , Padres , Adaptación Psicológica , Asma/psicología , Niño , Preescolar , Conflicto Psicológico , Diabetes Mellitus/psicología , Femenino , Humanos , Masculino , Estrés Psicológico
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