The participation of cohabitants with sickle cell disease in health care: a bibliographic study

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: (1) Experience of illness, highlighting coexistence and ethnic-racial issues; (2) Participation in research and the perspective of health professionals on SCD; and (3) 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.

Key words
Sickle cell disease; Participation; Literature review; Qualitative research