‘It's very hard, it's very very difficult ….’ Exploring the lived experiences of managing diabetes among young people living with type 1 diabetes in underserved communities in Ghana

Sub-Saharan Africa (SSA) is undergoing an epidemiological transition which is driving increases in the risk and prevalence of diabetes and other non-communicable diseases (NCDs). In Ghana, while the prevalence of diabetes is generally increasing, type 1 diabetes mellitus (T1DM) is increasing at a higher rate (9.5%) among young people compared to type 2 diabetes (4.9%) mellitus (T2DM). T1DM differs from T2DM in that it is not readily preventable, children are often diagnosed late, or diagnoses are missed entirely, and living with T1DM requires a different approach to care. Young people living with diabetes (PLWDs) and their caregivers often have new responsibilities placed on them. Given the increasing burden of diabetes among young people, and the lack of targeted prevention strategies coupled with inadequate care for young PLWDs in Ghana, there is an urgent need to identify context-relevant challenges to guide the development of interventions aimed at improving diabetes management outcomes. As part of a larger research program exploring diabetes risks and management in underserved communities, this paper explores the barriers and facilitators of managing diabetes among young people. We conducted photovoice interviews with young PLWDs (n=21) in Kumasi and Wa, Ghana. The key themes that emerged include sociocultural barriers and norms, the food environment, and embodied experiences including pains and scars from insulin injections. Overall, notwithstanding the insights generated from this study, further quantitative research may be useful to support the design of targeted preventive and management strategies for young people living with T1DM in Ghana and in other LMICs. a. Living with diabetes takes an emotional toll on young people living with diabetes (YPLWDs). b. YPLWDs embody their experiences in the form of pains and scars from insulin injections. c. Context-specific challenges impact diabetes management among YPLWDs. d. There is a need for targeted strategies that consider ecological and socio-cultural context.