Living in the shadow and light: Iranian youths' response to diabetes-related stigma

Abstract

This study aimed to explore the responses of Iranian young people with type 1 diabetes to the diabetes-related stigma. Conventional qualitative content analysis approach guided this inquiry. Volunteered people with type 1 diabetes were recruited by purposeful sampling from one endocrine and metabolism center in Isfahan in 2012. Data gathering was done through 17 individual unstructured in-depth interviews and 3 focus groups. Data saturation was achieved through 33 participants. The data were analyzed using qualitative content analysis. All participants acknowledged stigma and responded it in different ways, which was categorized in two main categories including living in the shadow (hide and seek, missing diabetes, withdrawal) and moving toward light (diabetes disclosure, destruction of the false bubbles). The most response especially for girls was to live in the shadow of silence that can be associated with negative consequences affecting diabetes management. Moving towards the light, suggests that it is possible to help people with type-1-diabetes to achieve a normal life as much as possible. It is necessary to plan the anti-stigma programs and engage them actively to reduce stigma and mitigate or prevent its negative impacts.

A discussion paper on stigmatizing features of diabetes

“…In some cultures such as Hispanic or Latino, diabetes is seen as a punishment from God. Weiler () wrote that the punishment ideology imposed a self‐associated stigmatization, which is similar to the Abdoli, Doosti Irani et al., study () in Iran and the Browne et al. () study in Australia.…”

“…Delayed marriage is reported in people with diabetes in different countries such as Iran and India (Abdoli, Abazari et al., ). Iranians believe that women with diabetes are not suitable candidates for marriage due to high‐risk pregnancies, the potential of having a child with diabetes, and the role of a woman in the Iranian family (Abdoli, Doosti Irani et al., ). In a similar study in the UK, the South Asian community described public perception that views diabetes as a sign of physical inadequacy to traditional marriage (Singh et al, ).…”

“…For example, negative social connotations about insulin injections are seen in different countries (Brod, Kongsø, Lessard, & Christensen, ; Buchbinder et al, ). Insulin injections can be misunderstood as drug abuse in Iran (Abdoli, Doosti Irani et al., ), Taiwan (Chen, Tseng, Huang, & Chuang, ; Lin et al., ) and Australia (Browne et al., ). Tajukestani's children expressed being stigmatized as drug abusers while trying to inject insulin in public places (Haugvik et al., ).…”

“…For example, in the United States, African‐American women in the Willig, Richardson, Agne, and Cherrington () expressed their frustration towards family and friends who make decisions for them about what they can eat. Iranian participants also pointed to the stigma of people with diabetes because of dietary restrictions (Abdoli, Doosti Irani et al., ).…”

“…Even in the 21st century, communities are not aware of diabetes aetiology and some consider diabetes a punishment or a result of one's lack of self‐control (Browne et al., ; Caban, & Walker, ; Hjelm, Bard, Nyberg, & Apelqvist, ; Lin et al., ; Vishwanath, ). Individuals also do not feel safe to inject insulin in public places because they might be misunderstood as a drug abuser or drunk while they are experiencing symptoms of hypoglycaemia (Abdoli, Doosti Irani et al., ; Browne et al., ; Ho & James, ; Lin et al., ).…”