Discrimination, Islamophobia, and Stigma as Barriers to Diabetic Retinopathy Screening Attendance Among Muslims in London: A Qualitative Study

Technical Summary: Discrimination, Islamophobia, and Stigma as Barriers to Diabetic Retinopathy Screening Attendance Among Muslims in London

Problem Statement
Despite the National Health Service (NHS) Diabetic Eye Screening Programme (DESP) being a globally recognized model for preventive care, equitable uptake remains a persistent challenge in London. While national uptake averages approximately 80%, significant geographic disparities exist, particularly in boroughs with large Muslim populations such as Tower Hamlets, which recorded a "did not attend" (DNA) rate of 27.4% in a 2015 audit. Previous research has largely attributed non-attendance to logistical barriers (transport, appointment access) and socioeconomic deprivation. However, these factors fail to fully explain the persistent disparities in Muslim-majority areas, where deprivation alone does not account for the variation in non-attendance rates. Existing literature often aggregates minority populations into broad categories (e.g., "South Asian"), obscuring the specific experiences of Muslim communities. This study addresses a critical gap: the lack of understanding regarding how discrimination, Islamophobia, and stigma function as distinct barriers to diabetic retinopathy (DR) screening attendance among Muslims in London.

Methodology
This study employs a qualitative approach as the second phase of a larger explanatory-sequential mixed-methods study.

• Design: Semi-structured interviews were conducted to explore participants' experiences with diabetes management, retinal screening, and interactions with the healthcare system.
• Sampling: Twelve Muslims living with diabetes in London were recruited via purposive sampling through four prominent mosques across North-Central, East, and South London, and at the Light Upon Light Islamic conference.
• Participants: The sample included five men and seven women (mean age 45.67 years) with diverse ethnic backgrounds (African, Pakistani, Bangladeshi, Arab, British) and varying socioeconomic profiles. Inclusion criteria required participants to be Muslim, London residents, and diagnosed with Type 1 or Type 2 diabetes. Individuals currently under active treatment for confirmed DR were excluded.
• Analysis: Data were analyzed using framework analysis, combining deductive coding based on theoretical concepts of felt and enacted stigma and Islamophobia, with inductive coding to allow emergent themes. The principal researcher's positionality as a British Muslim Nigerian woman with optometry training facilitated access and informed data interpretation.

Key Contributions
This paper is the first to specifically document discrimination, Islamophobia, and stigma as barriers to DR screening attendance among Muslims in London. It shifts the analytical focus from logistical access to the socio-relational and structural contexts of healthcare engagement. The study contributes to the literature by:

1. Distinguishing between enacted stigma (explicit discriminatory acts) and felt stigma (the internalized fear and behavioral constraints arising from anticipated discrimination) within the specific context of preventive eye care.
2. Demonstrating that Islamophobia operates not merely as interpersonal prejudice but as a structural force that shapes institutional cultures and patient behaviors.
3. Highlighting the gendered and racialized dimensions of Islamophobic stigma in healthcare, showing how Muslim men and women face distinct but equally stigmatizing stereotypes (criminality/extremism vs. oppression/ignorance).

Results
Three interconnected sub-themes emerged from the data, illustrating how stigma functions as a barrier:

1. Discrimination Arising from Visible Muslim Identity (Enacted Stigma):
   Participants reported recurring experiences of patronizing treatment, assumptions of low intelligence or lack of agency, and direct questioning of their eligibility for NHS services.

   • Women: Often described being treated as uneducated or incapable of making health decisions, with staff speaking slowly or using excessive hand gestures.
   • Men: Reported being associated with criminality or extremism, with some subjected to intrusive questions about their background or connections to extremist groups that were irrelevant to their clinical care.
   • Intersectionality: One participant noted that Black Muslim women face specific dehumanization regarding pain thresholds, compounding Islamophobia with anti-Black racism.

2. The Burden of Anticipating Discrimination (Felt Stigma):
   Even in the absence of direct discriminatory encounters, participants described a constant cognitive and behavioral burden of vigilance.

   • Identity Concealment: Some participants altered their dress (e.g., covering hair with hats or wearing Western clothing) to "blend in" and avoid judgment.
   • Strategic Avoidance: Participants scheduled appointments at specific times to minimize interaction with administrative staff or crowds.
   • Self-Advocacy: While some participants actively corrected misconceptions, this required resources and confidence not equally available to all, thereby compounding existing inequalities.

3. Effects of Wider Public Narratives:
   The study found that anti-Muslim societal narratives, including political rhetoric (e.g., post-Brexit anti-immigration discourse) and media portrayals of Muslims as terrorists or threats, directly influenced healthcare engagement.

   • Participants reported bringing passports to routine appointments as a precaution against eligibility checks.
   • Second-hand stories of discrimination within families were sufficient to deter attendance, reinforcing a community-level environment of anticipated hostility.

Significance and Claims
The paper claims that Islamophobia and the resulting stigma function as structural barriers to preventive health service access that operate independently of, yet interact with, logistical factors. The authors argue that the persistence of low uptake in Muslim-majority areas cannot be resolved through logistical improvements alone (e.g., better transport or extended screening intervals).

The study posits that the NHS DR screening programme must move beyond individual "cultural competence" training toward structural changes that address the discriminatory context. Specifically, the authors advocate for:

• Visible Representation: Ensuring staff diversity and culturally representative materials to foster a sense of belonging.
• Culturally Safe Care: Shifting the focus from clinician adaptation to the patient's feeling of safety and dignity.
• Anti-Racist Policy: Framing Islamophobia as systemic racism rather than individual animus, requiring public health advocacy to address the hostile political climate that delegitimizes minority access to public services.

The authors conclude that without addressing these structural and relational barriers, the NHS will continue to fail in providing equitable, sight-preserving care to the Muslim population in London.