A qualitative study of perceptions of determinants of disease burden among young patients with type 1 diabetes and their parents in South India

Abstract

BackgroundDiabetes is a leading threat to public health in India. A huge prevalence of type 1 diabetes among young patients is documented in literature; India is one of the countries with the highest number of new cases per year (10,900), of which 3–4 million face poverty along with diabetes.ObjectiveThe aim of this study was to explore the perceptions of determinants of the disease burden among young patients with type 1 diabetes and their parents.MethodsIn June 2014, perceptions were collected from eleven young patients and five available parents using the critical incident technique.ResultsDisease burdens associated with the management of type 1 diabetes can vary significantly according to the different social and economic determinants facing each household. Determinants associated with good practices in the management of childhood type 1 diabetes included socioeconomic status, unawareness of health complications, and beliefs about nutrition. Coping strategies applied via lifestyle changes included monitoring glycemia and regular checkups by diabetologists. A general lack of awareness about type 1 diabetes in Indian society, stigmatization, and limited access and systematic barriers to the delivery of optimal health care were all perceived to be factors hindering the successful management of chronic type 1 diabetes by young patients and their parents.ConclusionStigmatization, a lack of therapeutic adherence, and the financial strains placed on families, particularly on poor ones, are critical. More emphasis must be put on the prevention of acute and long-term complications and education.

A discussion paper on stigmatizing features of diabetes

“…A study performed in a U.S. Arab American community found that individuals often viewed diabetes as a weakness or breakdown (DiZazzo‐Miller et al., ). Indian mothers of children with diabetes experienced diabetes‐related stigma when other people labelled their child as a “sick kid” (Verloo, Meenakumari, Abraham, & Malarvizhi, ). This finding is similar to Weiler's (2007) study and Weiler and Crist's (2009) study where Mexican American participants with diabetes experienced stigmatization as “being sick” and referred to the stigma as “The Big D.”…”

“…Some Indian adolescents, especially girls with diabetes, experienced social stigmatization and were not wanted for marriage (Hapunda et al, 2015). This is also true for Indian mothers, who consider diabetes as a barrier for their daughters getting married (Verloo et al, 2016). Individuals with diabetes in London are thought to be unable to conceive or to have a normal pregnancy (Winkley et al, 2015).…”

Glycemic control and correlates in a group of sub Saharan type 1 diabetes adolescents

“…Type 1 diabetes mellitus (T1DM) is a chronic disease with a high prevalence and a growing concern worldwide [1]. It represents the main metabolic disease and one of the most common pediatric endocrine illness [2] affecting approximately 78,000 children, with 70,000 new cases diagnosed each year [3]. This condition usually affects children and adolescents leading to short- and long-term complications resulting in a high morbidity [4].…”

Low empowerment and diabetes regimen distress are related to HbA1c in low income type 1 diabetes patients in a Brazilian tertiary public hospital

“…These patients frequently do not have access to modern tools, diabetes education and other on-going support to assist them with disease management and to facilitate adaptive integration of their disease into every day life. Thus, low socioeconomic level is significantly associated with increased risk of poor self-management, treatment difficulties and psychological problems [12–14].…”