A qualitative study of type 1 diabetes complications, mental health, and structural pathways of complications occurrence among young people (14–24 years) and caregivers in southern Ghana

Abstract

Background: Young people (aged 14–24 years) living with Type 1 Diabetes (T1D), especially, those in low-resource settings experiencing having T1D complications, and poor mental health. Yet, little is known about T1D complications, mental health, and their lived experiences among young people and their caregivers in Ghana. Objective: This article sought to understand a) the dynamics of T1D complications, mental health, and lived experiences, and b) drawing on this evidence, develop structural and behavioural pathways of T1D complication occurrence among young people in Ghana. Methods: The study design was interpretivist phenomenology (qualitative). Twenty-eight young people living with T1D (YPLWD), 12 caregivers, and six healthcare providers across three regions in southern Ghana were purposively recruited and interviewed using interview guides. The methods included a photovoice where the YPLWD took photographs to highlight visible complications. Themes were formed from the quotes and photovoice. The analytical technique was thematic - performed with the aid of QSR NVivo 14. Results: Four main themes which were: physical complications, mental health, other adverse health outcomes, and structural pathways of complication occurrence were identified from the analyses. Physical complications discussed included visual impairment, diabetic coma, reproductive ill-health, and kidney disease. We found on the average, eight (8) years of living with T1D (with minimum and maximum years of 2 and 4 respectively). Mental health issues including anxiety and suicidal ideation transcended YPLWD to caregivers. Multiple structural and behavioural risk factors of T1D complications were also found. Conclusion: The YPLWD and caregivers in Ghana experienced multiple T1D complications and poor mental health. Unfortunately, these manifested early in their natural history of T1D, and were influenced by inadequate structural resources, and the adoption of sub-optimal self-care practices. This article underscores the need to improve structural T1D resources, promote optimal blood glucose control, alongside mental/psychosocial support for patients and their caregivers in Ghana.

Keywords

• Diabetes
• Complications
• Mental health
• Lived experience
• Adolescents
• Photovoice