Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study

Abstract

Adolescents living with SCD in Nigeria have lower health related quality of life compared to their healthy peers. They also experience stigma that impacts their HRQoL. Complications of SCD and hospital admissions contribute significantly to this impairment.

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

“…It has been reported that individuals who have SCD are perceived to be a burden and are subject to discrimination (Adeyemo, Ojewunmi, DiakuAkinwumi, Ayinde, & Akanmu, 2015). In the words of Bury (1988), "Money problems, job problems, and problems of personal care and practical daily living are shown to be the consequences of disability.…”

“…This view of patients with SCD was grounded in socially constructed meaning around the disorder where care was considered supportive and specialised. A strong infrastructure of support is considered integral to the effective management of SCD, and individuals with SCD who have reported good psychological well-being also experienced strong social support (Adeyemo et al, 2015;Amr et al, 2011 The implications of the construction of those with SCD as the other are expressed by family members;…”

“…Stigma has been found to negatively influence the quality of life of individuals who have SCD among all age groups, including adolescents (Adeyemo et al, 2015;Amr et al, 2011), children and young adults (Jenerette & Brewer, 2010), and adults (Aisiku et al, 2009;Jenerette et al, 2005). It was established in a study of adolescents in three sickle cell clinics in Nigeria that a perception of stigmatisation existed for the majority of the adolescents surveyed (Adeyemo et al, 2015).…”

“…Stigma has been found to negatively influence the quality of life of individuals who have SCD among all age groups, including adolescents (Adeyemo et al, 2015;Amr et al, 2011), children and young adults (Jenerette & Brewer, 2010), and adults (Aisiku et al, 2009;Jenerette et al, 2005). It was established in a study of adolescents in three sickle cell clinics in Nigeria that a perception of stigmatisation existed for the majority of the adolescents surveyed (Adeyemo et al, 2015). In the same study and elsewhere, and in addition to stigma, complications of SCD and hospitalisation were considered factors that adversely impact on the quality of life for those with SCD (Adeyemo et al, 2015;Jenerette & Brewer, 2010;Jenerette et al, 2005).…”

“…It was established in a study of adolescents in three sickle cell clinics in Nigeria that a perception of stigmatisation existed for the majority of the adolescents surveyed (Adeyemo et al, 2015). In the same study and elsewhere, and in addition to stigma, complications of SCD and hospitalisation were considered factors that adversely impact on the quality of life for those with SCD (Adeyemo et al, 2015;Jenerette & Brewer, 2010;Jenerette et al, 2005). Furthermore, inadequate support may lead to impaired health-related stigmatisation and quality of life among adolescents and young adults who have SCD (Adeyemo et al, 2015) and a deterioration in general health, physical, and social functioning, the physical role, bodily pain, and the emotional domain (Adeyemo et al, 2015;Amr et al, 2011).…”