Health Related Stigma Among Patients with Sickle Cell Disease

Sani Bako Abubakar; Yakubu Ibrahim Anas; Umar Musa Usman; Bakare Tomori Abdulfatai; Abubakar Ahmad; Bello  Amira; Ibrahim Hadi Abdulaziz; Abdullahi Uzairu; Sanusi Yusuf Abdallah; Ladan Aliyu; Sarki Junaidu; Abdullahi Dangulbi Shamsu; Umar Gwandu Nasir; Yusuf  Ibrahim; Mayana Usman Abubakar; Lawal Badru; Abdulsalam Inuwa Shamsuddini; Faruk Kalgo Yusuf

doi:10.5455/JPHCM.20250116072124

Abstract
Background: Health-related stigma, particularly among those with sickle cell disease, stems from societal misunderstanding. This manifests as rejection or discrediting by healthcare providers, peers, and the general public, further complicated by the psychosocial burden of acute and chronic pain crises. Despite its huge impact on people living with sickle cell disease, including barriers to medical care and intimate relationships, there is a paucity of research on sickle cell disease -related stigma in Northwestern Nigeria.
AIM: To determine the health-related stigma among patients with sickle cell disease at Usmanu Danfodiyo University Teaching Hospital.
MATERIALS AND METHODS: A total of 84 participants were enrolled over a six-month period using a consecutive sampling technique in this cross-sectional study. Self-designed instruments were employed to collect data on participants' characteristics. Stigma and its severity as well as its subtypes were assessed using the 11-item Measure of Sickle Cell Stigma (MoSCS). Statistical analyses were carried out using the SPSS version 25 (IBM SPSS Statistics for IOS, Version 25.0. Armonk, NY: IBM Corp).
RESULTS: The study revealed a high score of stigmata among individuals with Sickle cell disease, with a mean stigma score of 22.9 (SD±9.0). The majority of respondents were females (51.2%), students (77.4%), single (82.1%), and predominantly of the HbSS genotype (91.7%). 69% were having high expected discrimination, and 46.4% reported significant internalized stigma. Lower education level was significantly associated with higher stigma scores (p = 0.028).
CONCLUSION: In our environment, stigma among people living with sickle cell disease is high, with expected discrimination, disclosure concerns, internalized stigma, and social exclusion being more prevalent among respondents respectively. Lower levels of education have been found to be a factor associated with this stigma, emphasizing the need for further research to gain a better comprehension of its extent among sickle cell disease

Key words: Keywords: Sickle cell disease, Stigma, Internalized stigma, Expected discrimination.