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
authors: Winnie Samanú de Lima Lopes, Romeu Gomessummary/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, Brazil
Today’s Faces of Sickle Cell Disease: Rodrick MurrayRodrick Murray was 3 months old when he ...
Sickle Cell Patient Receives CRISPR Gene TherapyMany human diseases can be traced back t...
Barriers and facilitators to research participation among adults, and parents of children with sickle cell disease: ...Patient recruitment into sickle cell dis...
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...
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...
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.