An ethnographic study of children’s, young people’s and their parents’ knowledge and understanding of living with Type 1 diabetes in Saudi Arabia

Abstract

The number of children and young people diagnosed with Type 1 diabetes (T1DM) is increasing in Saudi Arabia. However, few published studies have attempted to explore the significance of children and young people’s knowledge and the impact of socio-cultural standards on the management of T1DM in Saudi Arabia. This study explores the extent to which children and adolescents with T1DM and their parents understand diabetes and the possible ways of managing it to prevent complications. The aim of the study was also to explore the health promotion strategies aimed at increasing knowledge of paediatric T1DM as utilised in two selected hospitals in Saudi Arabia. An ethnographic methodology was used, containing mixed data collection methods that included 100 hours of observations and semi-structured interviews with 39 participants (7 health professionals, 16 parents and 16 children and young people with T1DM). The study’s findings suggest that children’s understanding of T1DM, and its management occurs at multiple levels. Intrapersonal factors included children’s awareness of T1DM management activities, food preferences, and a sedentary lifestyle. Parental management of T1DM, school environment and Saudi culture were also assessed. Also, the study’s findings suggest that emotional and psychosocial effects of T1DM on children and young people and their families occur on multiple levels, and include negative feelings about injections and diet; psychosocial problems caused by T1DM within the family; relationships between parents and children and health professionals; and stigmatisation in the community. The study findings also suggest that health promotion and education strategies have effects on multiple levels. Health promotion through the use of health education strategies included individual support. The health professionals’ communication is a factor, as well as community services and school health promotion, and the challenges facing the health care system. Recommendations and interventions at multiple levels, from individual to policy level, are needed to address the knowledge and understanding of children and young people living with T1DM in Saudi Arabia. This study makes a significant contribution in addressing the importance of hearing children’s voices and the potential impact of their understandings and health related behaviours on their T1DM.