"They called me a terrorist": Social and Internalized Stigma in Latino Youth with Type 1 Diabetes.

Abstract

Diabetes-related stigma (DRS) globally affects patients' lives. Over a third of adolescents with type 1 diabetes (T1D) in Puerto Rico reported concerns of others knowing about their diabetes and about being different. We examined DRS among 65 T1D Latino youth (aged 12-17). During a depression-treatment study screening, they answered open-ended questions about diabetes-related concerns/difficulties and issues bothering them while interacting with peers, family, and healthcare professionals because of T1D. Using content analysis, we classified responses into Social Stigma (SS), Internalized Stigma (IS), and No Stigma. Four SS and IS sub-categories were developed. After coding, inter-rater reliability (Cohen's kappa) ranged from .73 to .1.00 (p≤.001). Forty-four youth (67.69%) reported at least one DRS verbalization, and 25 reported more than one. Both SS and IS were identified in 32 (49.23%) adolescents. Among SS experiences were: "they call me a junkie [because of insulin shots]"; "they call me a terrorist [because of insulin pump]". IS verbalizations included: "I've never wanted to accept that I have T1D, so I don't practice good self-care"; "at times I do not feel the same as others". We found more stigma-related verbalizations among those from urban zones or larger families. DRS was related to increased depressive symptoms and risk of a depressive disorder. Peers were the main source of SS. DRS was common, pervasive, and linked to depression. This study innovatively examines DRS in an exclusively T1D Latino and adolescent sample. Understanding its extent and nature is essential for developing interventions to address DRS.