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1.
Rev Bras Enferm ; 72(6): 1554-1561, 2019.
Artigo em Inglês, Português | MEDLINE | ID: mdl-31644744

RESUMO

OBJECTIVE: To understand spirituality/religiosity as experienced by people with sickle cell disease, and its influence on coping with the disease. METHOD: A qualitative, descriptive, and exploratory study conducted in the State of Bahia. Twenty-nine respondents participated in semi-structured interviews. Content analysis was used to analyze the empirical material. RESULTS: Individuals with sickle cell disease experience spirituality/religiosity motivated by their hope for a miracle, and fear of death; among their rites are: reading religious materials, individual and group prayer, and attendance at worship services. The effects on their health include: comfort by means of coping by comparing two evils, anxiety relief, social support, and lifestyle changes; however, spirituality/religiosity may be impaired. FINAL CONSIDERATIONS: This study demonstrates the need to qualify health professionals to address spiritual issues of these individuals during illness, with the aims of diagnosing suffering and anguish, and providing care, comfort and strengthening of the spiritual bonds of these individuals.


Assuntos
Anemia Falciforme/psicologia , Esperança , Religião e Psicologia , Espiritualidade , Adulto , Anemia Falciforme/enfermagem , Ansiedade/psicologia , Atitude Frente a Morte , Medo , Feminino , Enfermagem Holística , Humanos , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Manejo da Dor/psicologia , Pesquisa Qualitativa , Religião , Religião e Ciência , Apoio Social , Adulto Jovem
2.
Am J Nurs ; 119(6): 26-35, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31135428

RESUMO

: Sickle cell disease (SCD) is an autosomal recessive genetic condition that alters the shape and function of the hemoglobin molecule in red blood cells. While the overall survival rate among children with SCD has improved in recent years, pediatric rates of hospitalization, ED use, and mortality from complications of SCD remain high. Among patients ages 18 and older, hospital admission and ED usage are even greater-and the median age at death of people with SCD is considerably lower than that of the general population. Nurses who care for patients with SCD have an opportunity to improve health outcomes and quality of life for these patients by recognizing the major SCD-associated complications and providing patients and their caregivers with appropriate educational information. The authors discuss the genetic, hematologic, and clinical features of SCD and describe the major associated health complications. In addition, they review the nursing implications of each complication and provide online links to resources for clinicians, patients, and caregivers.


Assuntos
Anemia Falciforme/complicações , Anemia Falciforme/enfermagem , Anemia Falciforme/fisiopatologia , Cuidados de Enfermagem/normas , Recursos Humanos de Enfermagem no Hospital/educação , Guias de Prática Clínica como Assunto , Adulto , Currículo , Educação Continuada em Enfermagem , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
3.
Adv Emerg Nurs J ; 41(1): 86-97, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30702538

RESUMO

Treatment of vaso-occlusive episodes (VOEs) is the most common reason for emergency department (ED) treatment of sickle cell disease (SCD). We (1) compared perceptions of the usability and ability to manage VOE pain between ED nurses and other ED provider types, ED sites, and VOE protocols (individualized vs. weight-based), and (2) identified ED nurse and other provider protocol suggestions. A secondary analysis of provider survey data collected immediately after caring for a patient enrolled in a randomized controlled trial comparing weight-based versus individualized opioid dosing for VOE. Research staff asked the ED nurses and other ED providers (nurse practitioners [NPs], physician assistants [PAs], residents, and attending physicians) 5 questions related to the protocol's ease of use and ability to manage pain. There were 236 surveys completed. Attending physicians (n = 15), residents (n = 88), PAs (n = 21), and NPs (n = l) were more satisfied than nurses (n = 111) with the clarity of the analgesic ordering (97.6% vs. 0%, p = 0.0001) and ability to manage the patient's VOE pain (91% vs. 0%, p = 0.0001). When comparing both protocols with the usual ED strategy in their ED to manage VOE, more nurses than other ED providers perceived the study patients' pain management protocol as better (100% vs. 35.2%, p = 0.0001). Other ED providers perceived the individualized versus weight-based protocol as better at managing pain than their usual ED strategy (70.3% vs. 59.5%, p = 0.04). The individualized protocol was perceived as better in managing VOE than the weight-based ED strategy. While physicians were satisfied with the clarity of the protocols, nurses were not. Improved protocol usability is required for widespread ED implementation.


Assuntos
Analgésicos Opioides/uso terapêutico , Anemia Falciforme/complicações , Anemia Falciforme/enfermagem , Protocolos Clínicos , Conhecimentos, Atitudes e Prática em Saúde , Manejo da Dor/métodos , Peso Corporal , Serviço Hospitalar de Emergência , Feminino , Humanos , Masculino , Medição da Dor , Inquéritos e Questionários
4.
J Contin Educ Nurs ; 50(2): 87-95, 2019 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-30694337

RESUMO

BACKGROUND: Sickle cell disease (SCD) affects millions of people worldwide and is associated with significant morbidity and mortality. Nurses can have a significant role in improving the outcomes of individuals with SCD. This study examined the effectiveness of an educational program on the knowledge and practice of nurses who provide care for individuals with acute sickle cell crisis. METHOD: A pretest-posttest control group design was used. The study was conducted at two hospitals in the northern region of Egypt. The sample included 77 RNs working in hematologic and genetic units. Data were collected using a self-administered knowledge questionnaire and a clinical performance checklist. RESULTS: Findings indicated a significant difference in nurses' knowledge and care practices after implementing the educational program. CONCLUSION: This educational program enhanced nurses' knowledge and practice for managing SCD. Training and continuing education programs need to be provided for nurses in hospital settings who provide care for individuals with SCD. Moreover, nursing curricula should reflect the standardized care for individuals with sickle cell crisis. [J Contin Educ Nurs. 2019;50(2):87-95.].


Assuntos
Dor Aguda/enfermagem , Anemia Falciforme/enfermagem , Competência Clínica , Currículo , Educação Continuada em Enfermagem/organização & administração , Conhecimentos, Atitudes e Prática em Saúde , Recursos Humanos de Enfermagem no Hospital/educação , Adulto , Egito , Feminino , Humanos , Masculino , Inquéritos e Questionários
5.
Pain Manag Nurs ; 19(6): 558-572, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-30076112

RESUMO

BACKGROUND: Vaso-occlusive pain crisis is one of the primary complications of sickle cell disease (SCD) and is responsible for the majority of hospital visits in patients with SCD. Stints of severe pain can last for hours to days and are difficult to treat and manage, often resulting in drastically reduced quality of life. PURPOSE: Our purpose is to provide an overview of pain management issues in SCD populations. METHODS: We explored literature using PubMed and Embase for the etiology and management of pain in SCD. Databases were searched employing the following terms: sickle cell, pain pathways, pain perception, pharmacological therapies, psychological therapies, physical therapies and genetics. RESULTS: Pain in SCD can vary from acute to chronic (persistent) or mixed and understanding of the underlying mechanisms is important for proper pain management. Currently, there are many means of managing pain in children with SCD, which involve pharmacological and non-pharmacological approaches. A combination of psychotherapy and pain medications can be used for treatment of pain and other psychosocial co-morbidities in complex persistent pain. CONCLUSIONS: Providing more appropriate medication and optimal dosage based on individual's genomic variations is the future of medicine, and this will allow the physicians to hone in on optimal pain management in patients with SCD.


Assuntos
Anemia Falciforme/enfermagem , Manejo da Dor , Dor/enfermagem , Humanos
6.
Orthop Nurs ; 37(4): 221-227, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30028422

RESUMO

Sickle cell disease (SCD) is a group of inherited disorders caused by a mutation of the hemoglobin gene, resulting in the formation of abnormal, sickle-shaped red blood cells. It is a lifelong condition characterized by anemia, vaso-occlusion, and decreased blood flow to vital tissues. Sickle cell disease affects every major organ and significantly reduces life expectancy of the affected individuals. Patients with SCD are at an increased risk for developing musculoskeletal complications that decrease quality of life and contribute to the significant burden of the disease. Understanding these complications, as well as the genetics, pathophysiology, and epidemiology of SCD, will assist orthopaedic nurses in providing evidence-informed care.


Assuntos
Anemia Falciforme/complicações , Anemia Falciforme/enfermagem , Enfermagem Ortopédica , Anemia Falciforme/genética , Anemia Falciforme/fisiopatologia , Hemoglobina Falciforme/metabolismo , Humanos , Qualidade de Vida
8.
Int J Palliat Nurs ; 24(5): 246-255, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-29792764

RESUMO

BACKGROUND: Pain in sickle cell disease (SCD) is often joined by other affective disorders such as depression and/or sleep impairment that can impact pain levels and quality of life (QoL). AIM: To develop a guideline to improve the process of assessment and treatment of depression and sleep impairment in patients admitted with SCD. METHOD: An interdisciplinary team used the Stetler model to create the Guideline for the Evaluation and Treatment of Depression and Sleep Impairment in Sickle Cell Disease. Patients were assessed, offered treatments and reassessed during the project period. RESULTS: Both depression and QoL scores showed significant improvement by the end of the project. Significant correlations were found between pain, depression and sleep; depression, pain, sleep and QoL; sleep, pain and depression; and QoL and depression. CONCLUSIONS: Interdisciplinary teams are effective in creating a guideline to assess and treat depression and sleep impairment and their effects on pain and QoL in patients with SCD.


Assuntos
Anemia Falciforme/enfermagem , Anemia Falciforme/psicologia , Cuidados Paliativos , Guias de Prática Clínica como Assunto , Qualidade de Vida , Adulto , Depressão/psicologia , Feminino , Humanos , Masculino , Medição da Dor , Transtornos do Sono-Vigília/psicologia
10.
J Emerg Nurs ; 43(5): 444-450, 2017 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-28527641

RESUMO

INTRODUCTION: Sickle cell disease (SCD) is a complex illness with many social-behavioral co-morbidities. The aim of this project was to describe unmet social-behavioral health needs for adults with SCD who presented to the emergency department for treatment of vaso-occlusive episodes (VOEs). METHODS: A descriptive study using 1:1 interviews during an ED visit for a VOE was conducted; a brief social behavioral health screening interview guide was used. A convenience sample of adults with SCD treated in the emergency department for a VOE were eligible for inclusion. RESULTS: We conducted 147 interviews over 14 months. Patients reported transportation and/or scheduling difficulties with clinic appointments in one third of the interviews. Four major themes emerged: clinic appointment barriers, medication barriers, other care barriers, and social-behavioral issues. A majority of patients (53%) reported being brought to the emergency department by a family member at their current visit. Patients cited having insurance coverage issues in more than one quarter (27%) of the interviews. Difficulties in obtaining prescriptions were cited as a result of a financial copay (17%), transportation (11%), and pharmacy (9%) issues. Almost one third of patients (29%) reported feeling depressed, and 20% reported feeling anxious. DISCUSSION: Many patients with SCD who are treated in the emergency department have social or behavioral health risk factors. Emergency departments have an opportunity to screen and refer patients for follow-up. Future research should investigate referral outcomes and their effect on ED and hospital use.


Assuntos
Anemia Falciforme/enfermagem , Anemia Falciforme/psicologia , Enfermagem em Emergência/métodos , Serviço Hospitalar de Emergência , Estudos Transversais , Humanos , Estudos Prospectivos , Fatores de Risco , Inquéritos e Questionários
11.
Nurs Stand ; 31(27): 7, 2017 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-28247819

RESUMO

A trailblazer who set up England's first nurse-led sickle cell intervention and screening service and campaigned for a Mary Seacole memorial was made a dame by the Queen last week.


Assuntos
Anemia Falciforme , Anemia Falciforme/diagnóstico , Anemia Falciforme/enfermagem , Inglaterra , Papel do Profissional de Enfermagem
13.
Nurs Stand ; 31(6): 29, 2016 Oct 05.
Artigo em Inglês | MEDLINE | ID: mdl-27823116

RESUMO

Sickle cell disease is one of the most common global genetic disorders. It is a debilitating condition and children with sickle cell disease are more likely to have a stroke, and experience lower quality of life and shorter life expectancy.


Assuntos
Anemia Falciforme/enfermagem , Enfermagem em Saúde Comunitária/métodos , Humanos , Dor/etiologia , Acidente Vascular Cerebral/prevenção & controle
14.
Rio de Janeiro; s.n; nov. 2016. 134f p. ilus, map, tab.
Tese em Português | LILACS | ID: biblio-971637

RESUMO

Este estudo teve por objetivos descrever os instrumentos e signos mediadores da internalização do cuidado pelo escolar frente à doença falciforme; analisar a internalização docuidado pelo escolar frente à doença falciforme nos variados contextos sociais; discutir ainternalização do cuidado pelo escolar com doença falciforme e suas implicações para a saúde. Buscou-se apoio na teoria do desenvolvimento de Vigotski e o conceito de cuidado de Collière, como referenciais teóricos. Trata-se de um estudo qualitativo, com 15 escolares de 6a 12 anos, de um hospital de Vitoria - ES. Um formulário para caracterização dos participantes e uma entrevista semi-estruturada foram utilizados. A análise foi temática. Osresultados apontaram para os cuidados relacionados a hidratação e eliminação; o brincar;prevenção e manejo da crise falcêmica; alimentos e vestuário. Os escolares referiram ingerir variados tipos de líquidos, sendo a água e o suco os mais citados e a sua ingestão estava relacionada à prevenção da crise falcêmica. O atendimento às necessidades de eliminação da criança no contexto escolar mostrou-se prejudicada pela rigidez das normas estabelecidas pelas instituições. Quanto às brincadeiras e atividades físicas, não houve diferença entre o escolar com doença falciforme e as brincadeiras relatadas foram predominantemente ativas. A dor foi um signo mediador da internalização e os auxiliou na identificação de determinadas brincadeiras, como fator desencadeante da crise falcêmica. A interação se estabeleceu entre o escolar e outras crianças ou animais, principalmente no contexto domiciliar e escolar. Os medicamentos citados pelos escolares foram a hidroxiureia e ácido fólico, bem como os analgésicos e antitérmicos associados à manutenção e reparação de sua saúde...


This study had the objective of describing the mediating instruments and signs in the careinternalization by the school child in coping with Sickle Cell disease; To analyse theinternalization of care by the school child in coping with Sickle Cell disease in the severaldifferent social contexts; To discuss the internalization of care of Sickle Cell disease by theschool child, and its implications for the health. The development theory of Vigotski, as wellas the concept of care of Collière, as theoretical references. This is a qualitative study donewith 15 school children from 6 to 12 years old at a hospital of Vitoria - ES. A form for thecharacterization of the participants and a semi-structured interview were used. The analysiswas thematic. The results pointed to care related to hydration and elimination; playing;prevention and management of the Sickle Cell crisis; feeding and clothing. The schoolchildren refered ingesting several different types of liquides, being water and juice the mostcited, and the ingestion was related to the prevention of the Sickle Cell crisis. Meeting theneeds of the child for elimination was impaired in the school context because of the strictrules established by the institutions. In relation to the playing and physical activity there wasno difference between the school child with Sickle Cell disease and the other children, and theplaying was reported as predominantly active. Pain was a mediating sign of theinternalization, and it has helped them to identify certain ways of playing as triggering factorsof the Sickle Cell crisis. There was interaction established between the school child and otherchildren or animals, mainly in the home and school contexts. The drugs reported by theschool children were hydroxyurea and folic acid, as well as analgesics, antipyretic associatedto the maintenance and repare of their health...


Este estudio tuvo como objetivo describir los instrumentos y signos mediadores deinternalización de la atención por el niño en la enfermedad de células falciformes; analizar lainternalización de la atención por el niño en la enfermedad de células falciformes endiferentes contextos sociales; discutir la interiorización de la atención para el niño con laenfermedad de células falciformes y sus consecuencias para la salud. Se buscó seguir la teoríadel desarrollo de Vygotsky y el concepto de atención Collière como referencias teóricas. Estees un estudio cualitativo con 15 niños de 6 a 12, en un hospital de Vitoria - ES. Se utilizó unformulario para caracterizar los participantes y entrevista semi-estructurada. El análisis fuetemático. Los resultados apuntan a la atención relacionada con la hidratación y la eliminación,el juego, la prevención y gestión de crisis de células falciformes, la comida y la ropa. Losniños ingieren varios tipos de líquido, como agua y jugo. Estos eran los más citados y suconsumo se relaciona con la prevención de crisis de células falciformes. La atención a lasnecesidades de eliminación del niño en el contexto escolar resultó ser obstaculizado por larigidez de las reglas establecidas por las instituciones. En cuanto a juegos y actividadesfísicas, se encontró que no hay diferencia entre el niño con la enfermedad de célulasfalciformes y la población infantil en general, se dedican predominantemente a juegos activos.El dolor fue un signo mediador de internalización y les ayudó a identificar ciertos juegoscomo el factor desencadenante de la crisis de células falciformes. La interacción se establecióentre el niño y otros niños o animales sobre todo en el entorno de la casa y de la escuela. Losmedicamentos citados por los niños fueron hidroxiurea y ácido fólico, así como analgésicos yantipiréticos asociados con el mantenimiento y la reparación de su salud...


Assuntos
Humanos , Criança , Anemia Falciforme/enfermagem , Saúde da Criança , Doença Crônica/enfermagem , Enfermagem Pediátrica , Relações Familiares
15.
Afr Health Sci ; 16(2): 378-88, 2016 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-27605953

RESUMO

BACKGROUND: Globally, there is a progressive rise in the burden of non-communicable diseases (NCDs). This paper examined the health and social concerns of parents/caregivers on in-patient care for children with NCDs in Ghana. METHODS: This was a cross-sectional study in three large health facilities in Ghana (the largest in the South, the largest in the North and the largest in the Eastern part of Ghana. Data was collected with a structured questionnaire among 225 caregivers (≥18 years) of 149 children with NCDs in health facilities in the three regions. Data was analyzed with simple descriptive statistics. RESULTS: Most caregivers 169(75.0%) were women, relatively young (median age 35years), mostly married and resided in urban areas. Sickle cell disease was the commonest NCD among the children. All 169(75.0%) caregivers believed children suffer NCDs because of sins of parents/ancestors, 29(12.9%) believed herbalists/spiritualists have insights into treating NCDs and 73(32.6%) have previously used herbs/traditional medicine for child's illness. NCD in children was a burden and caused financial difficulties for families. Most caregivers (>96.0%) indicated NCDs in children should be included in national health insurance benefits package and a comprehensive national NCD policy is needed. CONCLUSION: Absence of national NCD policy for children is a major challenge. The burden of care rests mainly on the parents/caregivers. A national strategic intervention on the importance of awareness generation on the causes, risk factors, prevention and treatment of NCDs for families and communities is essential. Government support through national health and social policy initiatives are essential.


Assuntos
Cuidadores/psicologia , Doença Crônica/enfermagem , Pais/psicologia , Adulto , Anemia Falciforme/diagnóstico , Anemia Falciforme/epidemiologia , Anemia Falciforme/enfermagem , Criança , Pré-Escolar , Anormalidades Congênitas/diagnóstico , Anormalidades Congênitas/epidemiologia , Anormalidades Congênitas/enfermagem , Estudos Transversais , Países em Desenvolvimento , Diabetes Mellitus/diagnóstico , Diabetes Mellitus/epidemiologia , Diabetes Mellitus/enfermagem , Feminino , Gana/epidemiologia , Humanos , Masculino , Determinação de Necessidades de Cuidados de Saúde , Neoplasias/diagnóstico , Neoplasias/epidemiologia , Neoplasias/enfermagem , Psicologia , Saúde Pública , Medição de Risco , Fatores Socioeconômicos
16.
17.
Ciênc. cuid. saúde ; 15(2): 328-335, Abr.-Jun. 2016.
Artigo em Português | LILACS, BDENF - Enfermagem | ID: biblio-974823

RESUMO

RESUMO Este estudo objetivou identificar como a equipe de enfermagem percebe o cuidado à pessoa com doença falciforme na unidade de emergência. Trata-se de um estudo qualitativo e descritivo, desenvolvido em um hospital especializado no Rio de Janeiro com 12 membros da equipe de enfermagem do referido setor. A produção de dados ocorreu entre abril e setembro de 2014, mediante entrevista semiestruturada. Os dados foram submetidos à análise de conteúdo, emergindo como categoria: A equipe de enfermagem no cuidado à pessoa com doença falciforme na emergência. Ao cuidar da pessoa com doença falciforme em unidade de emergência, a equipe de enfermagem enfrenta algumas limitações, tais como: o manejo da dor, o nível de conhecimento da equipe sobre a doença, a organização e a estrutura do serviço diante das demandas de cuidado. Para cuidar dessas pessoas, os membros da equipe de enfermagem precisam estar preparados para saber avaliá-las considerando suas necessidades e suas trajetórias de vida com a doença, que implica em inúmeras internações ao longo da vida.


RESUMEN Este estudio tuvo el objetivo de identificar cómo el equipo de enfermería percibe el cuidado a la persona con enfermedad falciforme en la unidad de urgencias. Se trata de un estudio cualitativo y descriptivo, desarrollado en un hospital especializado en Rio de Janeiro-Brasil con 12 miembros del equipo de enfermería del referido sector. La producción de datos ocurrió entre abril y septiembre de 2014, mediante entrevista semiestructurada. Los datos fueron sometidos al análisis de contenido, surgiendo como categoría: El equipo de enfermería en el cuidado a la persona con enfermedad falciforme en urgencias. Al cuidar a la persona con enfermedad falciforme en unidad de urgencias, el equipo de enfermería enfrenta algunas limitaciones, tales como: el manejo del dolor, el nivel de conocimiento del equipo sobre la enfermedad, la organización y la estructura del servicio ante las demandas de cuidado. Para cuidar a estas personas, los miembros del equipe de enfermería necesitan estar preparados para saber evaluarlas, considerando sus necesidades y sus trayectorias de vida con la enfermedad, que implica en innúmeras internaciones a lo largo de la vida.


ABSTRACT This study aimed to identify how the nursing team perceives the care to the person with sickle cell disease at the emergency unit. This is a qualitative and descriptive study, developed in a specialized hospital in Rio de Janeiro with 12 members of the said sector nursing team. The Data production took place between April and September 2014 through semi-structured interview. Data were submitted to content analysis and the following category arised: The nursing staff in the care for the person with sickle cell disease in the emergency room. By taking care of the person with sickle cell disease in the emergency department, the nursing team faces some limitations, such as: pain management, the team's level of knowledge on the disease, the organization and structure of the service on the care demands. To take care of these people, members of the nursing staff must be prepared to learn to evaluate them considering their needs and their life histories with the disease, which involves numerous hospitalizations lifelong.


Assuntos
Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Serviço Hospitalar de Emergência/normas , Anemia Falciforme/enfermagem , Cuidados de Enfermagem/métodos , Dor/diagnóstico , Equipe de Assistência ao Paciente/normas , Estresse Psicológico/terapia , Talassemia/genética , Sistema Único de Saúde/organização & administração , Hemoglobinas/genética , Doença Crônica/enfermagem , Pessoal de Saúde/normas , Predisposição Genética para Doença/prevenção & controle , Equipamentos e Provisões/economia , Manejo da Dor/enfermagem , Necessidades e Demandas de Serviços de Saúde/normas , Hematologia/normas , Recursos Humanos de Enfermagem/normas , Equipe de Enfermagem/métodos
19.
J Pediatr Nurs ; 31(1): 55-63, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-26534838

RESUMO

UNLABELLED: Patients and families affected by various medical conditions report experiencing health-related stigma, which contributes to detrimental physical, psychological, and social outcomes. Sickle cell disease (SCD) is a genetic disorder that affects 89,000 individuals in the United States and is often associated with negative stereotypes and incorrect assumptions. The present study explored the perception of stigma as reported by caregivers of adolescents with SCD. DESIGN AND METHODS: Focus groups were conducted with 20 caregivers of patients with SCD. Focus groups were audio recorded and transcribed. The data were coded independently by two authors, and then reviewed conjointly until consensus was reached. RESULTS: Caregivers reported the perception of stigma in academic, medical, community, and family settings. They also reported internalized stigma including negative feelings toward having a child with SCD, feeling upset with others, and seeing negative emotions in their child due to SCD. Caregivers reported a general lack of knowledge about SCD across settings. CONCLUSION: These results demonstrated that stigma may affect individuals with SCD across multiple settings. These results also highlighted areas for intervention, with a focus on increasing communication and education toward medical providers, schools, and communities. PRACTICAL IMPLICATIONS: Interventions can utilize technology, social media, and advertisement campaigns. Additionally, support groups for patients with SCD may help decrease stigma and validate patients' experiences.


Assuntos
Anemia Falciforme/enfermagem , Anemia Falciforme/psicologia , Cuidadores/psicologia , Estigma Social , Inquéritos e Questionários , Adolescente , Adulto , Idoso , Estudos de Coortes , Feminino , Grupos Focais , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-Idade , Percepção , Qualidade de Vida , Medição de Risco , Estresse Psicológico , Estados Unidos
20.
J Holist Nurs ; 34(4): 351-360, 2016 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26620813

RESUMO

PURPOSE: Sickle cell disease (SCD) is a serious debilitating chronic illness, affecting approximately 90,000 Americans and millions globally. Spirituality and religiosity (S/R) may ease the burden faced by persons living with SCD. The purpose of this study was to examine the role of S/R in adolescents and adults living with SCD in the research literature. METHOD: The electronic databases Cumulative Index to Nursing and Allied Health Literature, Health Source Nursing/Academic, ProQuest Health Module, PsycINFO, Medline, PubMed, and the American Theological Library Association were searched from January 1995 to December 2014. FINDINGS: Of the 89 studies retrieved, 11 articles between 2001 and 2013 met the inclusion criteria and were reviewed. Four themes emerged. The themes included (a) S/R as sources of coping, (b) S/R enhance pain management, (c) S/R influence health care utilization, and (d) S/R improve quality of life. DISCUSSION: Use of S/R may be significant in coping with SCD, managing pain, affecting hospitalizations, and affecting quality of life. This review can direct researchers exploring S/R in adolescents and adults living with SCD.


Assuntos
Anemia Falciforme/psicologia , Qualidade de Vida/psicologia , Espiritualidade , Adolescente , Adulto , Anemia Falciforme/enfermagem , Feminino , Humanos , Masculino , Manejo da Dor/métodos
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