“My heart burns” – A qualitative study of perceptions and experiences of type 1 diabetes among children and youths in Tajikistan

Abstract

Aims To explore and describe perceptions and experiences of living with type 1 Diabetes Mellitus among children/youths in Tajikistan. Methods Qualitative methods were employed. Participants were recruited through purposive and snowball samplings. Data were collected using a semi-structured interview guide with children/youths having diabetes, their parents as well as health professionals. Data were analyzed according to Malterud's systematic text condensation. Results Children/youths with diabetes (n = 18), their parents (n = 19) and endocrinologists (n = 4) were interviewed. Families described unique stories in which "emotional stress" and a spiritual "evil eye" were perceived as possible causes of diabetes. Life-threatening complications and maltreatment preceding diagnosis of diabetes were frequent. From manifestation of diabetes onwards, families struggled with systemic and cultural obstacles, causing stigma, discrimination, high school-drop-out rates, diabetic coma, chronic complications or death of the child/youth with diabetes. Conclusions Results of this qualitative study highlight the severity and complexity of challenges families living with a child/youth having diabetes in this low-income country face. Efforts to improve life expectancy and life quality are strongly needed and require addressing both systemic and cultural factors in order to accomplish sustainable impact.

A discussion paper on stigmatizing features of diabetes

“…Children with T1DM in Tajikestan described their experiences of how people predict their premature death by saying, "You are very sick! You will die soon; you will not have a long life" (Haugvik, Beran, Klassen, Hussain, & Haaland, 2016), which is similar to (Abdoli, Abazari et al, 2013) in Iran. Some participants in Mendenhall and Norris's (2015) study also indicated how some people feel diabetes is a "death panel" by whispering about amputations due to diabetes and negative stories surrounding diabetes.…”

“…Insulin injections can be misunderstood as drug abuse in Iran (Abdoli, Doosti Irani et al, 2013), Taiwan (Chen, Tseng, Huang, & Chuang, 2012;Lin et al, 2008) and Australia (Browne et al, 2014). Tajukestani's children expressed being stigmatized as drug abusers while trying to inject insulin in public places (Haugvik et al, 2016). Australian participants also described being worried about, or having experienced, being mistaken for a drug abuser while injecting insulin.…”

Does Type 1 Diabetic Adolescents’ Fear of Stigmatization Predict a Negative Perception Insulin Treatment?

“…Related qualitative studies similarly revealed that individuals with diabetes went to the toilet to be alone while injecting insulin when they were out with their friends (Browne et al, 2014;Elissa et al, 2017;Haugvik, Beran, Klassen, Hussain, & Haaland, 2016). The results of other related studies show that adolescents tend to avoid injecting insulin or measuring their blood glucose when they are with their friends because of fears of being disrespected by their peers, being regarded as a drug-addict, being judged and missing the opportunity to make new friends or relationships (Browne et al, 2014;Elissa et al, 2017;Haugvik et al, 2016). They reported that girls in particular tended to avoid measuring their blood glucose and use insulin in public for fear of being perceived as an unhealthy individual (Elissa et al, 2017).…”

Struggling and Overcoming Daily Life Barriers Among Children With Congenital Heart Disease and Their Parents in the West Bank, Palestine

“…Thus, caring for a child with T1D can be emotionally and physically exhausting for parents (Johnson, 2013;Pateraki et al, 2015) and can result in stress and depression, particularly in mothers (Malerbi, Negrato, Gomes, & Brazilian Type 1 Diabetes Study Group, 2012;Nabors et al, 2011;Whittemore, Jaser, Chao, Jang, & Grey, 2012). In addition, qualitative studies have shown that children and adolescents with T1D experience stigma and feeling different from their peers (Hapunda, Abubakar, van de Vijver, & Pouwer, 2015;Haugvik, Beran, Klassen, Hussain, & Haaland, 2017). This can have a negative outcome, such as impaired psychosocial wellbeing and worsened physical health due to avoiding self-care activities (Abdoli, Doosti Irani, Parvizi, Seyed Fatemi, & Amini, 2013;Fritz et al, 2016).…”