Google
Trusted Resources: Evidence & Education
Scientific literature and patient education texts
The Participation of Cohabitants With Sickle Cell Disease in Health Care: A Bibliographic Study
source: Ciência & Saúde Coletiva
year: 2020
authors: Winnie Samanú de Lima Lopes, Romeu Gomes
summary/abstract:This paper aims to analyze the published scientific production about the participation of the sickle cell disease (SCD) subjects and their relatives, and the autonomy and social aspects of these individuals. A qualitative bibliographic search with the Portuguese-equivalent keywords “sickle cell disease” and “participation” was used. As a result, the following themes appeared: Experience of illness, highlighting coexistence and ethnic-racial issues; Participation in research and the perspective of health professionals on SCD; and Autonomy of cohabitants and decision-making.
We can conclude that the promotion of the participation of these patients in the studies, either instrumentally, or to contextualize the results better, or – still – to enrich the authors’ conclusions, can intentionally or unintentionally contribute to the greater visibility of the problem that involves being a SCD cohabitant for the subjects and their relatives. The duty to analyze intersectionally the entire context of the patient and his family context is also highlighted.
organization: Instituto Fernandes Figueira, BrazilDOI: 10.1590/1413-81232020258.30062018
read more
+myBinderRelated Content
-
LentiGlobin Shows Positive Effects in Severe Sickle Cell Disease Patients, Phase 1/2 Data ReportsBluebird bio presented new positive resu...
-
Culturally competent strategies for recruitment and retention of African American populations into clinical trialsPurpose: To identify successful recrui...
-
Today’s Faces of Sickle Cell Disease: Rodrick MurrayRodrick Murray was 3 months old when he ...
-
Strategies to build trust and recruit African American and Latino community residents for health research: a cohort ...Background: This study used Community P...
-
The Clinical Trial Journeyhttps://www.youtube.com/watch?v=iWqQiJeP...
-
Investing in a Cure for Sickle Cell Disease: Lakshmanan Krishnamurti, MDhttps://www.youtube.com/watch?v=Fr5KvM4U...
-
Preventing Strokes in Children with Sickle Cell Diseasehttps://www.youtube.com/watch?v=k6h7cb7S...
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.
Powered by
Support for this site is provided by
This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.