scholarly journals Educational technology on COVID-19 for families of children and adolescents with sickle cell disease

2021 ◽  
Vol 74 (suppl 1) ◽  
Author(s):  
Patrícia Peres de Oliveira ◽  
Elaine Cristina Rodrigues Gesteira ◽  
Rhillary Lorraine de Souza ◽  
Nayara Cristine Protte de Paula ◽  
Letícia Camilo Santos ◽  
...  
Keyword(s):  
Educational Technology ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Content Validity ◽  
Delphi Technique ◽  
Signs And Symptoms ◽  
Cell Disease ◽  
Methodological Study ◽  
Validity Coefficient ◽  
Three Stages

ABSTRACT Objective: to construct and validate educational technology on COVID-19 and essential care for families of children/adolescents with sickle cell disease. Methods: this is a methodological study, in three stages: 1) elaborated educational technology, using the Doak, Doak and Root theoretical-methodological model; 2) content and appearance validation by the content validity coefficient. Delphi technique was applied in two rounds (Delphi I [12 judges]/Delphi II [11 judges]); 3) conducting a pilot test with six families. Results: “Sickle cell disease and COVID-19: essential care” included: consequences of COVID-19 in sickle cell disease, guidelines for reducing the risks of contracting the virus and having complications, signs and symptoms of COVID-19, guidelines in case of child/adolescent with suspicion or symptoms of COVID-19. Global content validity coefficient (Delphi II): 0.98. Conclusion: educational technology presented content and appearance validity for families of children/adolescents with sickle cell disease, related to COVID-19.

scholarly journals Construction and validation of self-care educational technology for caregivers

2021 ◽  
Vol 74 (4) ◽  
Author(s):  
Ana Caroline Soares ◽  
Anderson da Silva Rêgo ◽  
Thamires Fernandes Cardoso da Silva Rodrigues ◽  
Luana Cristina Bellini Cardoso ◽  
Mariana Angela Rossaneis ◽  
...  
Keyword(s):  
Educational Technology ◽  
Content Validity ◽  
Delphi Technique ◽  
Informal Caregivers ◽  
Self Care ◽  
Methodological Study ◽  
Validity Index ◽  
Content Validity Index ◽  
Three Stages ◽  
Care Technology

ABSTRACT Objectives: to build and validate educational self-care technology for informal caregivers. Methods: methodological study, anchored in the Delphi technique, carried out in a municipality in the state of Paraná, Brazil, between September 2018 and November 2019. It was developed in three stages: situational diagnosis; elaboration of educational technology; content and appearance validation by expert judges and informal caregivers, using the content validity index and coefficient of variation. Results: after the steps of the methodological process, an educational technology called “Taking Care of Those Who Care” was produced, as an information tool that deals with the self-care of informal caregivers, receiving a content validity index above 0.86 and a variation coefficient. below 20% on all items. Conclusions: the educational technology was built and evaluated with satisfactory rates by the specialists and target audience, showing a high correlation of agreement, characterizing it as adequate and informative to informal caregivers.

scholarly journals Creation and validation of a health guidance booklet for family members of children with sickle cell disease

2019 ◽  
Vol 23 (1) ◽  
Author(s):  
Sarah Vieira Figueiredo ◽  
Thereza Maria Magalhães Moreira ◽  
Clarice Santos Mota ◽  
Roselene Soares de Oliveira ◽  
Ilvana Lima Verde Gomes
Keyword(s):  
Educational Technology ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Family Members ◽  
Field Research ◽  
Concordance Index ◽  
Pediatric Hospital ◽  
Cell Disease ◽  
Methodological Study

ABSTRACT The aim of this study was to elaborate a booklet for health follow-up and guidance on sickle cell disease for relatives of children with this disease and validate it. It is a methodological study, conducted from May 2017 to February 2018, of the elaboration and validation of an educational technology, constructed from previous field research in a pediatric hospital in Ceará (ethical opinion nº 994.879 and nº 955.727). Validation of content and appearance occurred by specialized, technical and communication judges; after the adjustments, the evaluation by representatives of the target public took place. The analysis was through the Concordance Index. Results: the evaluation of technical judges and experts reached a Global Concordance Index of 0.93, characterizing the book as good quality. The judges of communication evaluated all items as Superior. As for family members, everyone agreed that the book was adequate. It is concluded that the booklet has been duly drawn up and validated as regards its content and its appearance. Implications for practice: this educational technology is an important instrument to be used by health professionals, aiming to contribute to increase the knowledge of the relatives of children with sickle cell disease.

scholarly journals Sickle Cell Anemia Presenting with Vaso-Occlusive Pain: Should We Screen for COVID-19?

2021 ◽  
pp. 1-4
Author(s):  
Mohammad Ali ◽  
Lina Okar ◽  
Nabil E. Omar ◽  
Jabeed Parengal ◽  
Ashraf Soliman ◽  
...  
Keyword(s):  
High Risk ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Signs And Symptoms ◽  
Risk Groups ◽  
Position Statement ◽  
Interesting Case ◽  
International Federation ◽  
Cell Disease ◽  
The World

Despite the widespread of coronavirus disease-19 (CO­VID-19) infection around the world, there are very scarce reported literature about the care of patients with a known diagnosis of hemoglobin disorders such as sickle cell disease (SCD) or thalassemia and confirmed COVID-19 infection. Thalassemia International Federation issued a position statement to include patients with thalassemia and SCD among the high-risk groups of patients. Here, we present an interesting case of a 42-year-old patient know to have SCD presenting with Vaso-occlusive (VOC) pain episode in the absence of COVID-19 signs and symptoms, who tested positive for COVID-19 infection and had a smooth recovery. This case highlights the importance of screening SCD patients presenting with VOC-related events even in the absence of COVID-19 signs and symptoms.

Learning Not to Judge a Book By Its Cover: A Case Series of Malignancy Masquerading As Common Presentations of Sickle Cell Disease

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 4872-4872 ◽  
Author(s):  
Ahmar Urooj Zaidi ◽  
Lo'Rell Martin ◽  
Michael U Callaghan ◽  
Sharada A. Sarnaik ◽  
Jeffrey W Taub
Keyword(s):  
Cancer Therapy ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Research Funding ◽  
Hodgkin’S Lymphoma ◽  
Fetal Hemoglobin ◽  
Signs And Symptoms ◽  
Hodgkin's Lymphoma ◽  
Additional Patient ◽  
Cell Disease

Abstract Background: Sickle cell disease affects 100,000 people in the United States. Cancer does not appear to be more common in individuals with sickle cell disease however many presenting signs and symptoms of cancer overlap with signs and symptoms of sickle cell disease, complicating diagnosis. Furthermore, sickle cell disease can complicate surgical, chemo- and radio- therapies for malignancy. Methods: We reviewed the past 46 years experience of cancers in children with sickle cell at a large urban pediatric referral center. We identified 5 cases and reviewed the presentations, treatments, response to therapy, sickle cell complication and laboratory values, including transfusion needs and effect of chemotherapy on fetal hemoglobin levels. Results: We identified five cases of malignancies in children with sickle cell disease including cases of acute lymphoblastic leukemia (ALL), Hodgkin's lymphoma, Non-Hodgkin's lymphoma (NHL), Wilms tumor and renal cell carcinoma. An additional patient with sickle cell trait was diagnosed with metastatic renal medullary carcinoma. The patients were ages 6-18 years old at diagnosis and 4 were female. All had delays in diagnosis as their initial signs and symptoms overlapped with sickle cell disease (abdominal mass mimicking splenomegaly, low blood counts, fever and posterior reversible encephalopathy syndrome, hematuria). All five achieved complete remission with multi-modality therapy (excluding stem cell transplants) and are currently doing well 1- 20 years after treatment. Admissions for pain were reduced during and for some period after cancer therapy and 2 patients had marked, and in one case, prolonged elevation of fetal hemoglobin after therapy. Discussion: Children with sickle cell develop cancers that can be confused for sickle cell related complications. Cancer therapy can be well tolerated and successful in children with sickle cell. Sickle cell complications are decreased during cancer therapy likely secondary to frequent therapy related transfusion and therapy induced increases in fetal hemoglobin. Disclosures Callaghan: Biogen: Honoraria; Bayer: Honoraria; CSL Behring: Honoraria; Baxalta: Honoraria, Research Funding; Grifols: Honoraria; Roche: Honoraria, Research Funding.

scholarly journals Acute Chest Syndrome in Sickle Cell Disease: Clinical Presentation and Course

Blood ◽  
1997 ◽  
Vol 89 (5) ◽  
pp. 1787-1792 ◽  
Author(s):  
Elliott P. Vichinsky ◽  
Lori A. Styles ◽  
Linda H. Colangelo ◽  
Elizabeth C. Wright ◽  
Oswaldo Castro ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Young Children ◽  
Sickle Cell ◽  
Lower Lobe ◽  
Signs And Symptoms ◽  
Therapeutic Interventions ◽  
Acute Chest Syndrome ◽  
Cell Disease ◽  
Laboratory Findings ◽  
Striking Effect

Acute chest syndrome (ACS) is an important cause of morbidity and mortality in sickle cell disease (SCD). Previous studies reported conflicting pictures of ACS making therapeutic interventions difficult. The Cooperative Study of Sickle Cell Disease prospectively followed 3,751 patients enrolled from birth to 66 years of age for ACS. Data on presenting signs and symptoms, laboratory findings, and hospital course were collected. There were 1,722 ACS episodes in 939 patients. Young children (age 2 to 4 years) presented with fever and cough, a negative physical exam, and rarely had pain. Adults were often afebrile and complained of shortness of breath, chills, and severe pain. Upper lobe disease was more common in children; multilobe and lower lobe disease affected adults more often. Severe hypoxia occurred in 18% of adults tested and could not be predicted by examination or laboratory findings. Bacteremia was documented in 3.5% of episodes, but was strongly influenced by age (14% of infants and 1.8% of patients <10 years). ACS was most common in winter with children having the most striking increase. Transfusion was used less frequently, but earlier in children. Young children were hospitalized for 5.4 days versus 9 days for adults. Fifty percent of adults had a pain event in the 2 weeks preceding ACS and children were more likely to have febrile events. The death rate was four times higher in adults than in children. Fatal cases generally developed rapid pulmonary failure and one third were associated with bacteremia. Age has a striking effect on the clinical picture of ACS. In children, ACS was milder and more likely due to infection, whereas in adults ACS was severe, associated with pain and had a higher mortality rate.

scholarly journals Impact of education on the knowledge and skills of parents of children with sickle cell disease

2017 ◽  
Vol 5 (1) ◽  
pp. 209
Author(s):  
Purnima Yadav ◽  
Jayant Vagha
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Parental Education ◽  
Signs And Symptoms ◽  
Poor Quality ◽  
Cell Disease ◽  
Splenic Enlargement ◽  
Post Test ◽  
Treat All ◽  
Sickle Cell Crises

Background: Sickle cell disease is a haemoglobinopathy that affects millions throughout the world. It leads to poor quality of the life and increased mortality in children and young adults. In Vidarbha, SCD is common and it is pathetic to see children in morbid state dying due to some or the other crisis. Parents must be educated about the nature of the disease, earliest signs of crises and seek help, treat all febrile illnesses promptly. We contemplated that the key to success in the management of such children is parental education and this prompted us to undertake the present study.Methods: It was interventional study, done in Pediatric SCD clinic done in 2 years. Parent’s preexisting knowledge and awareness about sickle cell disease was assessed with the help of questionnaire and OSCE. They were then educated with the help of educational module comprising of pamphlets in Marathi, pictures, and also trained in clinical examination of their child to detect pallor, fever, jaundice, respiratory distress, pulse and splenic enlargement. After intervention posttest and OSCE was conducted again.Results: The pre-existing knowledge about inheritance, signs and symptoms of sickle cell anemia was high, but parents showed lack in skills of assessment of crises. These skills improved significantly after intervention. There was statistically significant (p<0.05) difference between average pretest and post test scores of each skill tested.Conclusions: Modular teaching using OSCE helps in improving skills of parents for early detection of sickle cell crises.

scholarly journals Validity of an instrument on Nursing care for people with chronic wounds

Rev Rene ◽  
2022 ◽  
Vol 23 ◽  
pp. e71367
Author(s):  
Maria Helloysa Herculano Pereira de Oliveira Araújo Gonzaga ◽  
Lidiany Galdino Felix ◽  
Ana Elza Oliveira de Mendonça ◽  
Ana Cristina de Oliveira e Silva ◽  
Simone Helena dos Santos Oliveira ◽  
...  
Keyword(s):  
Primary Care ◽  
Nursing Care ◽  
Content Validity ◽  
Delphi Technique ◽  
Chronic Wounds ◽  
Total Content ◽  
Methodological Study ◽  
Stages Of Development ◽  
Validity Coefficient

Objective: to build and validate the content of an instrument to investigate changes in the Nursing care provided to people with chronic wounds. Methods: methodological study, consisting of the stages of development and content validity, according to the criteria of clarity and relevance, by six judges, using the Delphi technique in two rounds. A Coefficient of Content Validity ≥ 0.8 was considered adequate. Results: the first version of the instrument contained 15 questions and after the judges’ evaluation it was reduced to 11, addressing the periods before and during the pandemic. In the second round of evaluation, it was verified that the instrument showed a total content validity coefficient equal to 0.96. Conclusion: the instrument showed evidence of content validity and can be used to investigate possible changes resulting from the pandemic of COVID-19 in the Nursing care of people with chronic wounds in Primary Care.

scholarly journals Acute Chest Syndrome in Sickle Cell Disease: Clinical Presentation and Course

Blood ◽  
1997 ◽  
Vol 89 (5) ◽  
pp. 1787-1792 ◽  
Author(s):  
Elliott P. Vichinsky ◽  
Lori A. Styles ◽  
Linda H. Colangelo ◽  
Elizabeth C. Wright ◽  
Oswaldo Castro ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Young Children ◽  
Sickle Cell ◽  
Lower Lobe ◽  
Signs And Symptoms ◽  
Therapeutic Interventions ◽  
Acute Chest Syndrome ◽  
Cell Disease ◽  
Laboratory Findings ◽  
Striking Effect

Abstract Acute chest syndrome (ACS) is an important cause of morbidity and mortality in sickle cell disease (SCD). Previous studies reported conflicting pictures of ACS making therapeutic interventions difficult. The Cooperative Study of Sickle Cell Disease prospectively followed 3,751 patients enrolled from birth to 66 years of age for ACS. Data on presenting signs and symptoms, laboratory findings, and hospital course were collected. There were 1,722 ACS episodes in 939 patients. Young children (age 2 to 4 years) presented with fever and cough, a negative physical exam, and rarely had pain. Adults were often afebrile and complained of shortness of breath, chills, and severe pain. Upper lobe disease was more common in children; multilobe and lower lobe disease affected adults more often. Severe hypoxia occurred in 18% of adults tested and could not be predicted by examination or laboratory findings. Bacteremia was documented in 3.5% of episodes, but was strongly influenced by age (14% of infants and 1.8% of patients <10 years). ACS was most common in winter with children having the most striking increase. Transfusion was used less frequently, but earlier in children. Young children were hospitalized for 5.4 days versus 9 days for adults. Fifty percent of adults had a pain event in the 2 weeks preceding ACS and children were more likely to have febrile events. The death rate was four times higher in adults than in children. Fatal cases generally developed rapid pulmonary failure and one third were associated with bacteremia. Age has a striking effect on the clinical picture of ACS. In children, ACS was milder and more likely due to infection, whereas in adults ACS was severe, associated with pain and had a higher mortality rate.

scholarly journals Disabilities in leprosy: construction and validation of instrument on knowledge and attitude of professionals

2021 ◽  
Vol 74 (5) ◽  
Author(s):  
Emanuelle Malzac Freire de Santana ◽  
Karen Krystien Gonçalves de Brito ◽  
Smalyanna Sgren da Costa Andrade ◽  
Ester Missas Villaverde Antas ◽  
Matheus de Medeiros Nóbrega ◽  
...  
Keyword(s):  
Content Validity ◽  
Physical Disability ◽  
Delphi Technique ◽  
Physical Disabilities ◽  
Content Validation ◽  
Methodological Study ◽  
Validity Index ◽  
Knowledge And Attitudes ◽  
Three Stages ◽  
Knowledge And Attitude

ABSTRACT Objective: To develop and test the content validity of the “Knowledge and Attitudes on Assessing Degrees of Physical Disability in Leprosy” instrument. Methods: Methodological study carried out between January and May 2019 in three stages: item generation, analysis of aggregated redundancy to the composition, and content validation, using the Delphi technique. Results: In the first evaluation, a relevance of ≥ 0.80 stood out for all items, except for 2.8, which was excluded. To make the instrument clearer, the sequence was renumbered from one to 32; 2.6, 3.1, and 15 were reformulated, and the others underwent modifications, except for ten and 13. After the second evaluation, all items obtained Content Validity Index > 0.90 and Kappa = 1.00. Conclusion: The instrument has an excellent content validity; it is inferred that it is adequate to measure the knowledge and attitudes of professionals in the assessment of physical disabilities in leprosy.

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