scholarly journals Knowledge of and attitudes toward heel prick screening for sickle cell disease in Saint Lucia

2017 ◽  
Vol 41 ◽  
pp. 1 ◽  
Author(s):  
Sonia Alexander ◽  
Sharon Belmar-George ◽  
Alisha Eugene ◽  
Vanessa Elias

Objectives. In the Caribbean country of Saint Lucia, umbilical-cord-blood screening for sickle cell disease (SCD) was the testing method that health care workers (HCWs) on the maternity wards of the hospitals preferred until the new heel prick (HP) testing method was introduced in the country in 2014. This SCD study sought to assess HCWs’ knowledge of and attitude toward HP screening and also determine new mothers’ favorability toward HP screening. Methods. A total of 70 HCWs and 132 new mothers answered survey questionnaires in three hospitals. In addition, four focus group discussions were held, two with HCWs and two with the mothers. Results. Among the HCWs interviewed, 85.7% of them had knowledge of the HP test. However, only 25.7% had attended training sessions on the procedure. Among the HCWs, 64.3% of them felt the HP test should be mandatory, 27.1% said it should not be mandatory, and 8.6% did not know if it should be mandatory. In their focus groups, the HCWs said they believed the mothers would accept the HP method. For their part, 22.0% of the mothers said they had heard about the HP test, and 63.6% reported knowing the reason why the baby would be tested. Further, 83.3% indicated that the test would be beneficial for the baby. In addition, 88.6% of the mothers said that more information on the HP test was needed. In their focus group discussions, the mothers said they were generally not concerned about the pain the heel prick method might cause the baby. Conclusions. The HCWs’ knowledge of the HP screening method was high. The mothers trust HCWs, and the mothers would accept the HP procedure irrespective of their knowledge of the test and any discomfort associated with this screening method.

2018 ◽  
Vol 103 (12) ◽  
pp. 1104-1109 ◽  
Author(s):  
Subarna Chakravorty ◽  
Amy Tallett ◽  
Cara Witwicki ◽  
Harriet Hay ◽  
Catherine Mkandawire ◽  
...  

ObjectivesTo develop patient-reported experience measure surveys for patients with sickle cell disease (SCD) to understand their healthcare and lived experience in the UK and for their use in future to inform healthcare service development.DesignPicker methodology was used as follows: (1) qualitative scoping by focus group discussions; (2) questionnaire development through stakeholder consultations; (3) construct validation of questionnaires through cognitive testing; and (4) further assessment of construct validity by a nationwide pilot survey.SettingPatients with SCD and their carers were eligible. Focus group discussions took place in non-hospital settings, arranged out of hours. Cognitive testing took place in specialist sickle cell clinics. The pilot survey was available to UK participants only and was administered through web-based questionnaires, face-to face completion and in sickle cell community events.ParticipantsThirty-three patients and carers took part in the focus groups, 21 participants undertook cognitive testing and 722 respondents completed the pilot survey.ResultsFindings highlighted a widespread prevalence of poor knowledge about SCD among healthcare providers and the public. Poorer experience of care was present in the emergency setting compared with planned care, of which lack of timely provision of pain relief was of concern. Adolescents and young people reported significantly poorer experience of care in several domains compared with children or adults.ConclusionsThe new surveys functioned well, with good evidence of validity, and were accessible to the SCD patient population, supporting their future use in assessing patient experience to inform service delivery and improvements in care quality.


2020 ◽  
Vol 1 (1) ◽  
pp. 36-46
Author(s):  
Melissa Day ◽  
Kemberlee Bonnet ◽  
David G. Schlundt ◽  
Michael DeBaun ◽  
Deva Sharma

2012 ◽  
Vol 3 (12) ◽  
pp. 1-7 ◽  
Author(s):  
Ghida Aljuburi ◽  
Karen J Phekoo ◽  
Nv Ogo Okoye ◽  
Kofie Anie ◽  
Stuart A Green ◽  
...  

2022 ◽  
Vol 75 (1) ◽  
Author(s):  
Rafael Rocha ◽  
Tania Vignuda de Souza ◽  
Rita de Cássia Melão de Morais ◽  
Luciana de Cássia Nunes Nascimento ◽  
Leila Leontina do Couto ◽  
...  

ABSTRACT Objective: to analyze the understanding of mothers about sickle cell disease and/or trait of the family from a diagnosed child. Methods: this is a qualitative study, using a semi-structured interview with 23 mothers, at a sickle cell disease outpatient clinic of a public institution, from October to December 2017. Analysis was thematic. Results: all participants had sickle cell trait as well as the parents of their children. Twenty children were diagnosed with sickle cell disease by Heel Prick Test, and three, after hospitalization due to the disease. Most did not know how to report the presence of the trait or disease in relatives other than nuclear. Final considerations: diagnosis cannot be restricted to the result of neonatal screening, requiring that preventive information on sickle cell crises be reinforced. It is recommended to search for other affected relatives to learn about their genetic condition, reflecting on their reproductive decisions.


1974 ◽  
Vol 133 (4) ◽  
pp. 624-631 ◽  
Author(s):  
T. A. Bensinger

2020 ◽  
Vol 8 (4) ◽  
pp. 390-401 ◽  
Author(s):  
Taryn M. Allen ◽  
Lindsay M. Anderson ◽  
Samuel M. Brotkin ◽  
Jennifer A. Rothman ◽  
Melanie J. Bonner

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