Health-Related Stigma in Young Adults With Sickle Cell Disease

Abstract

Health-related stigma is increasingly becoming a major public health issue that is receiving more attention. Young adults with sickle cell disease (SCD) are at risk for health-related stigmatization due to the many challenges of the disease. SCD includes the lifelong challenges of managing the chronic illness while accessing and navigating the health care system. The burdens of the disease can affect all aspects of the lives of individuals with SCD to include physiological, psychological, and social well-being. Although others may be involved in the process of stigmatization, the purpose of this paper was to support the need to develop patient-oriented interventions to prevent and treat health-related stigma in young adults with SCD, as these individuals may face health-related stigma throughout their lives, but especially immediately after transitioning from pediatric to adult care. Additionally, the Revised Theory of Self-Care Management for Sickle Cell Disease is offered as a framework from which theory-based interventions can be derived.

Survey of Physician Perspective towards Management of Pain for Chronic Conditions in the Emergency Department

“…However, based on prior research, sickle cell disease patients, who in the U.S. are nearly all African-American, might receive less analgesia than racial majority members, and might more often be suspected of malingering, of being dependent on opioids, or of being psychologically addicted than those with the "control" conditions. [26] We found that both estimated rates of opioid addiction (defined by the caregiver) and estimated rates of withdrawal symptoms were consistently higher for either sickle cell disease patients or chronic pancreatitis patients than for low back pain patients. However, these rates were not estimated statistically significantly higher for sickle cell disease patients than for chronic pancreatitis patients, though numeric estimates were higher for sickle cell disease patients.…”

Incidence of Human Immunodeficiency Virus in Sickle Cell Patients in the Cape Coast Metropolis, Ghana

“…Also the effect of HIV on people with genetic defect condition such as Sickle Cell Anaemia has been documented [4] [5]. However, studies of the prevalence and the effect of HIV on Sickle Cell Anemia subjects have not been well elucidated.…”

The Construction of Sickle Cell Disorder in Saudi Arabia: The Invisible Disease

“…The impact of stigmatisation and marginalisation on those with SCD is recognised as a feature of their lives in school, in the workplace, and in the healthcare setting (Anderson & Asnani, 2013;Forrester et al, 2015;Jenerette & Brewer, 2010;Jenerette, Funk, & Murdaugh, 2005). More broadly, the experience of stigmatisation is known to be associated with depression, anxiety, and suicidal ideation (Goffman, 1963;Jenerette & Brewer, 2010;Jenerette et al, 2005) and hence the probability that stigma increases the burden on patients with SCD and families (Jenerette & Brewer, 2010).…”

“…More broadly, the experience of stigmatisation is known to be associated with depression, anxiety, and suicidal ideation (Goffman, 1963;Jenerette & Brewer, 2010;Jenerette et al, 2005) and hence the probability that stigma increases the burden on patients with SCD and families (Jenerette & Brewer, 2010). It is so and as Helman (2007) wrote that; "symptoms achieve their meaning in relation to physiological states which are interpreted as the referents of the symptoms" (p.122).…”

“…The process of interpreting chronic pain thus defines the experience and the legitimacy of the disease (Savitt et al, 2014 It has been reported that mistrust and stigmatisation on the part of healthcare providers, and specifically emergency doctors, are issues that significantly influence the pain management of SCD and also reflect knowledge deficits in this area (Aisiku et al, 2009). A recognised dimension of the issue is poor communication between doctors and patients with SCD in emergency departments (ED), which gives rise to negative experiences (Jenerette & Brewer, 2010). Aisiku et al (2009) examined the frequency of ED use by those with SCD in the US and found no correlation between frequency of presentation to the ED and drug abuse.…”