Factors affecting the disclosure of diabetes by ethnic minority patients: a qualitative study among Surinamese in the Netherlands

Abstract

BackgroundDiabetes and related complications are common among ethnic minority groups. Community-based social support interventions are considered promising for improving diabetes self-management. To access such interventions, patients need to disclose their diabetes to others. Research on the disclosure of diabetes in ethnic minority groups is limited. The aim of our study was to explore why diabetes patients from ethnic minority populations either share or do not share their condition with people in their wider social networks.MethodsWe conducted a qualitative study using semi-structured interviews with 32 Surinamese patients who were being treated for type 2 diabetes by general practitioners in Amsterdam, the Netherlands.ResultsMost patients disclosed their diabetes only to very close family members. The main factor inhibiting disclosure to people outside this group was the Surinamese cultural custom that talking about disease is taboo, as it may lead to shame, gossip, and social disgrace for the patient and their family. Nevertheless, some patients disclosed their diabetes to people outside their close family circles. Factors motivating this decision were mostly related to a need for facilities or support for diabetes self-management.ConclusionsCultural customs inhibited Surinamese patients in disclosing their diabetes to people outside their very close family circles. This may influence their readiness to participate in community-based diabetes self-management programmes that involve other groups. What these findings highlight is that public health researchers and initiatives must identify and work with factors that influence the disclosure of diabetes if they are to develop community-based diabetes self-management interventions for ethnic minority populations.

High Diabetes Distress Among Ethnic Minorities Is Not Explained by Metabolic, Cardiovascular, or Lifestyle Factors: Findings From the Dutch Diabetes Pearl Cohort

“…Several possible explanations exist for the difference in diabetes distress between ethnic minorities and Caucasians observed in our study. Unmeasured factors related to ethnic origin (e.g., migration-related stress, language problems, health illiteracy, comprehension issues, and cultural differences) could contribute to diabetes distress (21)(22)(23). Also, religion and religious coping strategies might affect diabetes distress and helpseeking behaviors.…”

Disclosure of Type 1 diabetes at work among Finnish workers

“…Higher HbA 1c level, and longer duration of diabetes were associated with disclosure to line managers only. These results support previous studies reporting that people with Type 1 or Type 2 diabetes choose to disclose depending on how serious their condition is and which self‐management activities are required . In the present study, individuals who had irregular working times, including shift work, were more likely to disclose their diabetes to their line manager.…”

National recommendations: Psychosocial management of diabetes in India

“… Recommendation 91 : An understanding of factors that influence patients’ decisions to maintain confidentiality about diabetes within their social networks is needed for using community-based interventions to improve diabetes self-management in ethnic minority patients[185] (Grade A; EL 3). …”